For this episode of Karger’s The Waiting Room Podcast, we spoke with Abby Match about her patient journey with breast cancer, her work as a patient advocate as well as Breast Cancer Awareness Month in October.
Abby was diagnosed with triple-negative breast cancer at the age of 35 in 2020. Being a Speech Language Pathologist in Early Intervention throughout Philadelphia County by trade, she became a breast cancer advocate after the diagnosis. Furthermore, she became a board member of the US-based non-profit organization Living Beyond Breast Cancer in 2023. Abby networks to help others get screened for genetic mutations prior to disease, engages in fundraising, and wants to be a voice for others.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Abby, and welcome to The Waiting Room Podcast.
Hi. Thank you so much for having me.
Now, please tell us a bit about yourself and your patient journey with triple-negative breast cancer.
Sure. I’m currently 39 years old, but when I was 35, I was diagnosed with triple-negative breast cancer, and then later found to have a BRCA1 mutation. And for those that don’t know what BRCA mutation is: It means that you’re susceptible and you’re at high risk of developing certain cancers like breast cancer, ovarian cancer, prostate cancer, melanoma, and pancreatic cancer.
So, being that I didn’t know I was carrying this, this was such a shock to receive a diagnosis of breast cancer at a young age. At the time, my daughter was going into kindergarten and my husband and I were also experiencing the pandemic like most of the world was experiencing. So, it was quite a shock to hear those words and have this shutdown going on at the same time. So, yeah. The experience was rather different than most people going through a diagnosis because I was really left to navigate this physically on my own.
I imagine that that came as quite a shock. So what did you do when you had to do it by yourself?
So, I got the news, and I reached out to three different cancer centers in the Philadelphia area, and I started going to initial visits and consultations on my own and FaceTiming or calling my husband, who was sitting at home or sitting in the garage of a hospital because they wouldn’t let him in. It was, it felt cold. It felt very isolating to not have somebody next to me, but this was the hospital policy. And here I was getting all the information to hopefully save my life. And dotting my I’s, crossing my T’s that I was hearing everything correctly and then going over it with my husband later on, who was also listening, but it was just such a strange time.
But we got through this, and I made a decision ultimately to get treated at a certain cancer center here. And once I did that, everything changed from feeling anger, grief, fear, sadness, loss, all of that. Once I stepped into this cancer center for my first day of chemotherapy, the emotions completely shifted to feeling hopeful, having connections, having faith. Everything was restored, and I have to say that that shift in that first day of my chemotherapy stays with me today, and I am not grateful for being faced with my own mortality.
But there’s something to be said about when you hear those words and you are in this situation, you find your whole self. And I know not everyone is as fortunate as I have been to be disease-free to date, and I say that because I know this isn’t possible for everyone out there, but if it’s possible and you can have this experience to live with, the contrast in this comparison of ‘Okay, I was faced with death. Here I am. Now I can look at my life and live with resilience and grit and self-love’. And it is an amazing opportunity to find yourself and what you want in life.
And it was that first day of chemotherapy for me. I never thought I would see it. I never, I don’t know, everyone has this moment at different times in their life and their experience in their journey in breast cancer. Some people might not experience that, and I have to acknowledge that. But for me, my life changed the day I walked into chemo round one.
Excellent. That sounds really, really positive and I’m sure it’s not like that for everybody, as you pointed out. But this also leads me to my next question how you experienced the healthcare system as such. Well, starting with the diagnosis and leading to chemotherapy and being in a breast cancer center.
Yeah, it was interesting. So, my journey really, although it was 2020 when I was diagnosed, I experienced symptoms in 2019. At the time I was 34, and I remember going to my well visit at the gynecologist and saying: ‘You know, I have a lot of pain on the left side of my breast. I am not able to sleep on my side.’ And my daughter, who was four at the time, would cuddle with me, like I just, it was on fire and I felt a lump in my armpit. So, I want to say the health care system didn’t deny me the investigation of what could be, but they were rather dismissive at the same time.
So, I got a mammogram, I got an ultrasound, but when all of that came back fine, I was told I just had dense breast tissue, and I got a letter in the mail stating that. So, I personally didn’t know. I just thought that was good news. I didn’t investigate it. And although it is fine news, there are still some things that could have been a jump-off from that that I didn’t know how to advocate for, didn’t really know what that meant. So, I just let it go, thinking that I would, ‘Okay, then I’m good’. So, I went on for an entire nine months, still in pain, but being told that it was probably menstrual and hormonal and, you know, scans were fine to then getting a diagnosis.
So, I often think: ‘Okay, how did I get here? Did this all grow in nine months? Was there cancer in 2019?’ Probably. And I think what could the healthcare system have done differently for me and what could I do differently for other women like me? So, here’s the answer: I’m of Ashkenazi Jewish descent. So, Eastern European, I should say. I am young. I was experiencing pain. I felt a lump, I saw a difference in my breasts. So, what should have happened at the time was somebody in that system or on that team should have said to me: ‘You need to go to get a risk assessment for genetics, and we need to put you in a high-risk category’, because of everything I just told you. So that was never, ever triggered.
And here I am, for years, my entire life, checking the box at every appointment I went to that I’m of Ashkenazi Jewish descent, not knowing why they’re asking me. I mean, they’re asking that for a reason. They’re out there. They know why they’re asking it, but they’re not telling you why they’re; well, for me, they weren’t telling me why they were asking that. So, why ask the question if there’s no follow-up? So, I want people to know their risk. And if you’re checking that box and your health care system is not asking you any further questions on that, you have to bring that up. You have to have a follow-up about that. That’s something that I did not do, and it could have been, my outcomes could have been different in the sense that I could have been detected earlier. I was detected at a later stage.
So, at the time of my diagnosis, it was a triple-negative stage 2b. So I had lymph node involvement and my tumor size was pretty large. As a result, I had more extensive treatment, which is great in my case that I’m clean and I had everything at the kitchen sink thrown at me to get there. But also, you know, treatment is harsh on your body. And if you don’t need to have all that treatment because you can find cancer earlier or get it before you get a diagnosis, that’s more ideal. So, I would say that’s where the healthcare system for me, I feel, really failed. And I don’t want to see this happening much longer to women. And it’s avoidable. It really is.
Absolutely. Now, you mentioned the effects of the treatment on your body. Did you experience any side effects of the treatment? And the second part of the question would be, relating to the positivity you mentioned when entering the clinic on day one, and that everything changed, is how did the diagnosis and the breast cancer itself affect your emotional health?
Yeah, okay. So, in terms of the physical side effects of treatment, I was really fortunate. Again, not everyone experiences this, but my side effects were pretty minimal. You know, I had this idea in my head, what you see in the movies, over a toilet, throwing up. It was not like that for me. I also have to give a shoutout to my family who allowed me the time to rest, and that was really important. And then I also have to say that having a routine and structure of being able to keep my job as a speech therapist during COVID, because there was video conferencing going on, really helped me too. I was forced to wake up, shower, throw on my wig, do some makeup, get in the chair and fake it till I make it [laughs]. I, you know, working with children, I needed to be very engaging, entertaining. And that all really helped my physical well-being.
In terms of my emotional well-being, I, yeah, when I stepped into that chemo suite and I sat down in the chair, I said to the nurse who brought over my the medication. She was in a robe, you know, she was all ready to go, gloves on. I said: ‘Oh, this must be the Red Devil.’ And that’s what I heard everyone name my chemotherapy because it’s red. And they say it makes you super sick. And she looked at me, right in the eye, and she said: ‘I’m so tired of hearing that. This is your life-saving drug. Let’s call it what it is. It’s not the devil. This is your friend, and I want you to picture this going into your body, accepting it, and seeing it kill those cancer cells. Let’s look at it that way. Let’s stop calling it the devil.’ And I was like, ‘Whoa!’, I was mind-blown. I was, ‘Thank you for that!’
And it was all of these experiences of being in the chemo suite and hearing the nurse talk to me in that way and realizing that I could believe that I was going to be okay. There was hope. This was not, for me, I’m not going to look at this as a death sentence. I’m looking at it as an opportunity to clean up my body and my life. There’s something that landed me in this spot today. There are tons of people that have genetic mutations, a high risk for cancer, familial history of cancer that don’t get cancer. So why did I get cancer? I had to look within me and figure out what landed me in this chair. And from there, it wasn’t a place of blame. It was a place of responsibility, of what I was going to do today and moving forward to live my best life.
I see, especially having a young child around too. So, how was your life after treatment, were there any post checkups and how was your life after that, and how did it affect your work and your family life, for example?
Yeah. So, after, let’s see, I had chemotherapy, a double mastectomy, 22 lymph nodes removed, radiation. I did a preventative hysterectomy because of my risk of ovarian cancer was about 65% chance of getting ovarian. And then I had reconstructive surgery. So, I would say, like, a year and a half of active treatment. And being told I was disease-free was amazing news and was my goal, of course. With triple-negative, there is a very high probability of the recurrence rate in the first five years. Really, really in the first two to three years, they say.
So they have you on a tight leash. So, it’s visiting my oncologist every three to six months and then it expanded. So, right now I just hit year four disease-free, so I am seeing my oncologist every six months. And, you know, a lot of people have trouble with the letting go and not having their hand held. And it can be very frightening. And although I experienced that at first, it’s actually really great to know that you’re getting to a place where you can confidently say ‘This cancer is not returning’. You know, you can never say never, and there’s never a 100% guarantee.
But with triple-negative, the longer you go with that recurrence, the better the outcome, and they rarely see it return after five years. Unlike other subtypes. This is a very different type of breast cancer. There’s no receptor. There’s no hormone receptor. There’s no pill that you’re taking to help your risk of recurrence after. It’s unlike any other subtype. So it’s very aggressive, very different. So, I’m at a place in my life where it’s nice to not be visiting the cancer center on a routine, you know [laughs]. Twice a year feels great.
I see. Now, having a daughter of roughly the same age as yours, how did your daughter cope with it?
Yeah, that was really, really challenging. My daughter was in preschool when she had a peer lose her mother to breast cancer, and it was talked about in the classroom because this daughter was going through, obviously, a very difficult time. So they explained to the children what was happening, and I was aware of what breast cancer did to her friend’s mother. So, I was very cautious and I had my guard up, you know, want to tell Yael that I have breast cancer. Her only, at four years old, her only association is breast cancer kills. So I was very, against like all these books that social workers were throwing out to me and people reading on discussion groups, on Facebook or wherever it was, of ‘how to tell your child that you have breast cancer’. And I’m like, no, I can’t do that. I cannot do that for my family.
So. I took it upon myself to make my own rules. And I told her and she could see it and feel it because my tumor, like I said, was fairly large, and it was not in my breast. It was in my armpit, very high up. So I had her feel it. I had her name it. So she called it Barley Boo. She gave it a name. I gave her as much control as possible. And I told her that this was something in my body that was making me sick and that I needed to go get treatment to get Barley Boo out. And I had a port placed also for my medication. So I explained that that medicine was going to help. She named that Shrinker Dinker. So, I gave her as much control as, you know, at that time she was five then, I gave her as much control and as little information as really she needed at five. You know, I didn’t, people would say that ‘kids know that you’re lying to them. They’re smart, they’re savvy. You know, she’s going to be angry if you lie’. I said: ‘I’m not lying. I just I’m telling her what she needs to know.’ We started family therapy together.
The difficulty was she wasn’t going to school. It was a pandemic. She was home. She saw me every step of the way. So. I, you know, I had a best friend who came over and did virtual school with her and kept her distracted. I had other friends who would stop by and give her a lot of attention. My mother-in-law, my mom, like. My husband was working, and with me; I mean, we were such a team to get through this. It was absolutely beautiful, incredible, and she did as well as she could. And then when I get the news that I was disease-free after my active treatment, we took a video and I sat her down with my husband and I said: ‘Do you want to know the name of that illness that I had? You know, that was causing Barley-Boo, and Shrinker Dinker helped, and I don’t think I ever really told you the name.’
And I just was very laissez faire-and inquisitive and curious and, you know, embracing her and holding her during this time. And she said, ‘sure’. And I said it was called breast cancer. And she said, ‘Ooh’, and we have this all documented, and we all cried and we all embraced each other. And it was this moment I’ll never forget, and I’m glad I did capture it. So, I just felt like I didn’t want to name it until I knew where I was in my treatment. Was I going to be on treatment for the rest of my life because I didn’t respond to treatment, or was I going to be on a different trajectory? And I’m so fortunate that I had the response I did, and I had that moment, and I’ll have many moments in my life going forward to share with my family.
Absolutely. Thank you for sharing that, Abby. That’s quite an inspiration. Now, to come to something completely different, after the diagnosis or after the treatment, at some point you started collaborating with Living Beyond Breast Cancer. How did that come about? And what does your role as a patient advocate and board member for Living Beyond Breast Cancer entail?
Yes. So, Living Beyond Breast Cancer is an amazing non-profit national organization, well known, and here I am outside of Philadelphia, and their headquarters are here. How lucky am I? I go to my first visit with the oncologist and I leave there, and I have all this information on Living Beyond Breast Cancer. I even had an email with Jean Sachs, who’s the CEO of Living Beyond Breast Cancer, and my oncologist, who was on the Board at the time, connected us. And I remember receiving this email, and remember what I told you at first, I was in the deepest, darkest place with my emotions before I got into that first round of chemo. So, here I am, leaving his office with an email of, you know, ‘Hi, you know, I’m here to connect and offer support’. And I just said: ‘Thanks, but no thanks. Not ready at the time.’
And it wasn’t until a couple months went by that I left that first round and began to find myself and see the hope that I contacted Jean back and I said: ‘Okay, I think I’m ready to talk now.’ And once I talked to her, I remember I was sitting on my bed and she gave me probably an hour of her time, and I thought, why didn’t I do this sooner? I think I know the answer, but immediately I knew I had to get involved in terms of getting the trusted information support that they offer and being a part of their community. So, I signed up for the email list, and I began going to virtual events, listening to webinars they were hosting. Again, this was during COVID, so there weren’t in-person events, but I attended everything and anything that I could. I started to go on walks with Jean outside in the woods, if we were able to do that. She would connect me with other young women in the area, going through a similar situation as me, and we would meet and go for walks, mask up and walk and walk and walk and talk and talk and talk.
And my goodness, like, yeah, I needed community. I needed connections. And when I found that and I realized how I couldn’t fathom how I was going to give back. Like, how am I going to give back to these individuals in this organization that got me through the worst time in my life? So, I began, as the world opened up, I began to volunteer. I went to speak at different events and share my story and offer support. And I became a young advocate with the organization. They do a phenomenal job teaching what advocacy is and training young advocates to go out in the world and community and share their stories.
I learned how to raise money and, you know, fundraise in a really meaningful way. And it became so natural to me. I started a hobby of beading bracelets during my treatment. And in a little over three years, I’ve raised USD 50,000 for organizations and people close to my heart in need of financial assistance. And most of that money has gone to Living Beyond Breast Cancer. That’s called ‘beading cancer together’. B-e-a-d-ING. And yeah, I just, there are not enough words to provide somebody or an organization who has changed your life. And that to me, the young advocacy, the training and then the fundraising, that is my way of giving back and will always be. And then having this honor to be on their Board and come together and help make decisions. It’s just an incredible experience that I don’t take for granted.
I see, so you’re literally speaking ‘living beyond breast cancer’ now, as the name of the organization also entails. Excellent. Now, being a patient advocate yourself: How would you value, estimate the role of patient advocates, especially when guiding other patients that are not as savvy or don’t know where to find the appropriate literature or aren’t as health-literate? How would you classify your role as a patient advocate and the need for patient advocates nowadays?
That’s right. Yeah, so I think patient advocacy can mean something different to so many people. There are individuals who are paid to be patient advocates. There are patient advocates starting to be accessible in the hospital system. There are individuals on social media who claim they’re patient advocates, and they certainly are. It just, you know, it means something different to everyone.
So, for me personally, I’m a volunteer who has been trained by Living Beyond Breast Cancer to be a patient advocate. So, I’m careful when I’m connected with individuals who come to me of how I provide information, and I do it in a very systematic way. So, they can call the helpline through LBBC to get information and resources. They could sign up to be a young advocate themselves and learn how to navigate the system and help others. But I just want to be clear that we’re, as patient advocates, we’re not telling people exactly what to do. We’re supporting people and guiding them with resources, evidence-based resources and the right people. It’s really important that people understand that too that, you know, we can’t make somebody do something. We can only give you the proper resources.
So, yeah, it depends on, that’s something too, if people aren’t sure how to get started on patient advocacy. Looking at LBBC’s approach to that is really important. It’s really important. And just being careful too, like what kind of information you take from others, because there is not always truth to everything you see on social media. And it’s not, I’m not putting blame on anyone, but there’s a lot of false information out there. So, you have to really take information carefully and always talk to your doctors or your nurse navigators or whoever before you make some informed decision.
I absolutely agree. Now, last but not least, as we are approaching the end of the interview, October is Breast Cancer Awareness Month. And this year’s theme is ‘Thrive 365’. Now, what are your thoughts on this motto and what are your own plans for the awareness month?
Yeah, so I love the name because I think what they do in October, they do all year round. And it really is, like you said, living beyond breast cancer. Thrive 365 – it’s living every day to your fullest. And how do you get there? What do you do, what actionable steps you take? I mean, we as an organization, I’m so proud to say that we can provide the tools to help people get there. The trusted information and the support is what will help people thrive 365 and, you know, there’s a lot, a lot of money given to research. And it’s so important. And I think sometimes people get mixed up that Living Beyond Breast Cancer, they’re part of, you know, research and care and they’re not. But it is just as valuable to have this organization. We need, this is what we need as thrivers, as survivors, however you want to call yourself and identify, this is what we need.
We need community. We need connections. We need the latest research out there to be broken down into information to be conveyed to us in a way we can understand it. I mean, for me, I’m not going to open up literature and be able to understand it as well as I could. If going to a webinar through LBBC and saying: ‘Okay, this is what the latest research is showing and this is what you can ask. You can ask for X, Y and Z or you need to sign up for a clinical trial’. I mean, LBBC, they are saving lives in a different capacity, in a different way, and it is such a valuable organization and meaningful and I’m just so grateful to be part of it and to see how well they do and how they grow every year to continue to serve our community.
Excellent. Thank you, Abby. Now, I think that’s a perfect ending of the interview. I love your positivity, and I’ve learned a lot today. Thank you very much for sharing your story and the very personal aspects of it regarding your daughter. I appreciate it a lot. Thank you very much. Fingers crossed that everything will continue to be fine. And thank you for making the time.
Thank you so much for having me. It was great talking to you.
Likewise. Bye-bye. Thank you.
Bye.
For the first episode of season 5 of Karger’s The Waiting Room Podcast, we spoke with Alastair Boyle about his experiences with blood cancer, his work as a patient advocate and trustee as well as Blood Cancer Awareness Month in September.
Ally was diagnosed with myelodysplasia, a type of blood cancer, in 2008 and eventually had to retire from his work as a firefighter in 2014. He then focused on patient and public involvement and providing input to charities, research studies and committees, for example, by serving as a Trustee for Blood Cancer UK.
If you are looking for more detailed information on the signs and symptoms of blood cancer, follow this link to the section of the Blood Cancer UK website which discusses them and has a video talking about what to look out for.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello and welcome to the Waiting Room Podcast.
Hi Alex. Delighted to be here. Nice to meet you.
You’re welcome. Now, let’s get right to it. Despite being the fifth most common cancer and the third biggest cancer killer in the UK, blood cancer doesn’t receive as much profile as the other four common cancers. Why is that?
It’s difficult, isn’t it? I think part of it is because, you know, there are, what’s it, 134 different blood cancers, and maybe people think of them as that. You know, so people probably think about leukemia. Some might know lymphoma. But beyond that people don’t really know. I didn’t know what blood cancer was when I was diagnosed. I had no idea. And I think it’s difficult when you’ve got this disparate group of conditions, and a lot of people don’t actually know they are blood cancers. To bring that together, so people understand actually what you’ve got is a blood cancer. And understanding that does lead to better support for people, I think.
Now you mentioned that you didn’t know much about or anything about blood cancers before being diagnosed. So, please tell us a bit about your own patient journey. And that is with myelodysplasia if I’m not mistaken.
That’s right, yeah. So, about 16 years ago, my wife was pregnant and she wasn’t sleeping very well, so I wasn’t sleeping well. I was a senior officer in the Fire Service. So, busy, stressful job. I’d be in the gym early in the morning, and I’d be working till late at night. And so, suddenly I became really exhausted, and I just assumed that’s all it was. Exhaustion, or perhaps a virus. And then after my daughter was born, it just got worse and worse, and I had to go off work sick. And what the doctor said was: “Oh, it’s just a virus. You’ll be fine.”
But it got to the point that I was, you know, so, I was a 37-year-old firefighter who had to crawl upstairs to go to bed. I was confused. I remember one day I was outside my house and I said to my wife: “What am I doing?” And she said: “You just, just get in the car.” I’m like, “I don’t know what I’m doing.” And she said: “You need to go to bed.” And then what followed was eight months of to and fro to doctors, and then eventually hematologists who couldn’t understand it and just said: “Oh, it’s another virus. It’s another virus.”
And it was, but they were happening because my immune system was massively compromised because as it turned out I had myelodysplasia. And I only found out that when I had a bone marrow biopsy, and then I was sat in a room and they told me what it might be. So it might be this thing, myelodysplasia. I made the mistake of googling it. And then when I went back, I said: “Oh, you said you’d do another biopsy to see if it’s this thing.” And they went: “Oh no, it’s definitely that”. And I knew nothing about it. I didn’t know what blood cancer was. And they didn’t describe it as a blood cancer either. They said: “You know, think of it as a bone marrow failure disorder.” Well, if you google bone marrow failure disorder, that doesn’t lead you to patient support groups, and you need it. I didn’t get any information or anything. So it was really confusing.
And then when I said: “You know, what does it mean?”, thinking, you know, a bone marrow failure disorder will be like a virus, it will go away, to be told: “Well, it’s difficult to say for certain, but I would imagine that you’ll be as ill as you are for a couple of years. Then you’ll become really ill. And if you don’t get a stem cell transplant, you’ll die.” And then I got information saying your average life expectancy is three and a half years. It’s what they said at the time. So, that’s pretty terrifying when you don’t know anything about the condition.
Absolutely. Yeah. So what did you do after that? Where did you find trustworthy and, most of all, understandable information about the condition?
Well, it was actually a while, because, you know, there was so much inconsistency when you googled to have a look, to see what it was. And, you know, the specialist was quite clear: “Don’t do that. Don’t look at it.” But it was actually over a year later when I put my hands on a trusted document. It was a leaflet that had been developed by Blood Cancer UK and MDS UK. And it was a patient leaflet I went through, it had all the different questions in it, and it was really helpful. And that gave me the courage to seek some more information from MDS UK and then to go back to my specialist and to say: “I want to be referred to a center of excellence.”
I had assumed they all see thousands of cases like me. And it’s only when I went there, they said, you know, I found out that MDS’ average age of diagnosis is still in the 70s. So, as a 37-year-old, I was quite unusual. And they’ll be seeing very few cases. I assumed, I don’t know how many blood cancers there are. Don’t know how many people have got MDS. I assumed, Oh, he must be an expert. He must be dealing with loads of these people, people like me. And what I realized is: No, that’s not the case. And that was quite a difficult conversation at times to have, but, you know, we got there and then.
Excellent. Now, how did you experience living with myelodysplasia? I mean, especially regarding mental and physical health. You mentioned that you worked as a firefighter, so a pretty stressful job. At which point couldn’t you pursue your job any longer?
Yeah. Well, immediately my consultant said: “You need to retire because there’s too many risks. You’ve got no immune system.” And I said: “You know, well, I’ve just moved house. I’ve got a new baby. I can’t not work. What can I do?” – “Well, you’ve got bigger problems to worry about.” And I suppose that’s that patient involvement part of it is, you know, in his mind, probably, my condition probably was the biggest thing I should be worrying about. But actually it’s not for the patient. You’re worrying about your family. You’re worrying about your circumstances. You’re worrying about a job that I fought very hard to get and have done my very best to be the best possible person I could in that job. And that became really difficult.
So what I did for a while was, the Fire Service were very, very supportive and had a very good occupational physician. And so the doctor that I saw in the Fire Service was very supportive. They allowed me to work without going to fires for a period of time. And I probably used work as a distraction, if I think back about it. But for me, right from the beginning, in terms of my health, I had an absolutely crushing headache. You know, it feels like someone is squeezing the back of my head. My glands and my armpits, my groin were in agony all the time.
And, you know, this is still, this is my daily experience now. I felt really nauseous. The fatigue was incredible at times. I could, as I described it, someone could set fire to the chair I was on; I wasn’t convinced I could get off it. It was so bad. But I managed to keep working, and that was my experience for a while. I thought, this is what I’ll do. In fact, I kept working for a good few years, and eventually I got a really, I got it through the support of the Fire Service doctor. He was able to explain, you know, that when I go to fires, I’m taking command of them outside, I’m not going into the building, the risk is manageable. But actually, if you think about it, it’s the patient’s risk. It’s not your risk as a clinician. So, you know, we recommend them to you. Firstly, sit them down and give them some proper information because you haven’t given us prognosis. You haven’t explained what it means. You’re telling what you can’t do, not what you can do.
And that really helped because what happened after that was the specialist had me back in and said: “Look, I’ve received a two-page letter from your occupational physician. I’ve written a three-page letter back to you explaining everything. I’m going to read it to you. I’m then going to leave you for half an hour to read it yourself. Then I’m going to put a clinical nurse specialist with you to sit and answer any questions you’ve got immediately. And then I’m going to come back and sit with you.” And what an incredible difference that made to my relationship both with my hematologist but also my understanding of my condition. And that makes me think, I was really lucky I had someone fighting for me, who, a medical expert who could say to me: “That’s not right. Here’s the information you should have been told.”
But what that meant was, we got to a point I could go back to my full duties. And horrifically difficult all that was, I kept doing that for a number of years until it got to the point. There was a year, every year after winter I would be so unwell, I would need to go off for a period of time because my body struggled through winter, fighting all the different conditions, and I’d just be too fatigued. And then there was a year where, I was in a very senior role in the service, and I was basically working, going home to my bed, working, going home to my bed for a year. And I didn’t really see much of my family, and I was just broken. I was so fatigued.
And my specialist had said: “Look, I know how stubborn you are, and we’ve been telling you for years you should really retire. I need to really tell you now that your bloods are all starting to go downhill. And, it’s not about you making your life more difficult than you need to be. There’s only one potential cure. It’s a transplant. You’ve only got a 30% chance of surviving that and your disease not coming back. You’re going to put yourself in a position that that’s going to happen to you sooner than it should. You really need to retire.” And that’s what I had to do. I had to retire from the service, which was like a bereavement. I’m still, ten years later, I still feel bereaved about it. You know, it’s the greatest thing I’ve ever done. I loved it, but the reality was that’s where I was. And retiring probably saved my life because my bloods are still, you know, really quite poor but they’re, touch wood, stable, and I’m able to function better.
And I suppose the other bit about, going back a little bit, was, one of the other things that happened, as I mentioned earlier on, I had pursued my clinician to seek out further information. That changed the way he thought about my condition as well. You know, because he realized, actually, you’re completely different than someone under 50, and, you know, remember that I was under 40 with this condition. You’re in a totally different risk category than would be considered. So, all of that together meant I was able to pursue my career for longer than I probably should have. But eventually it just became too much. And the reality is that’s it was deeply unpleasant and upsetting, but I’m in a much better place because of that. I’m so glad that I was persuaded to that position because it really wasn’t helpful.
Yeah, that’s good to hear. Now, what would you recommend to other patients living with blood cancer, regardless of the type?
Yeah, I mean, I think the first bit is you’ve got to be your own advocate. So, whilst you might not want to, googling can be difficult. You need to find a source of trusted information. When I was able to get information from Blood Cancer UK and MDS UK, it gave me the confidence to go back and politely challenge some of the assumptions. So I went back and said: “I understand there are centers of excellence for myelodysplasia and realized that you only deal with a few cases a year. These people deal with a lot. I want to be referred and I’m not, this isn’t me questioning your abilities. This is my patient right. And actually, I think it would be better.”
And there was a resistance at first as though I was questioning their competence, which I wasn’t, but once they referred me, they said: “Okay, well, actually, what we’ll do is, there’s a clinician we know who’s really good with MDS, runs a center of excellence. Let’s run your case by him, and if he thinks you should be referred across, we’ll do that. But maybe there’s a middle ground.” And they found this middle ground where they said: “Actually, it’s been really good because he just sent back a study which had been done in Germany and people with MDS who are under 50. It shows that your average life expectancy is probably more like eight years rather than the three that we thought. It says really clearly, you know, having spoken to him, that we should try not to treat you with any drugs as much as possible, as long as you can go on with a low immune system.”
And both my red and white count were out then; my red count came back to a better place. “Then that’s what we should do, because it’ll leave you more transplantable. We haven’t thought about any of this stuff, really, and it’s been helpful.” And even now, every now and again, I see it’s the time to run my case past them again, yeah probably will, just to make sure there’s no clinical trials out. So that’s the first. But you’ve got to be your own advocate. You don’t have to become the world’s greatest expert in your condition, but you have to remember that nobody knows your condition better than you. So when you’re speaking to a clinician and you disagree with something that they’ve said, don’t be put off by their expertise and their phenomenal training, because they are not living in your body. So yes, they are experts in hematology, but you’re the expert in your condition, and you should see yourself as an equal in that regard.
Because there are times were people will make assumptions about what’s important to you, and as I say, you know, the assumption at the beginning was my work would be the least important thing rather than the most. And also, there might be times where you see information or you see how another patient is being treated and you’re able to bring that back to them to say: “Have you seen this?” or “Do you know that?”. So that’s the first thing I would always say: Try and be your own advocate, find the trusted sources of information and then offer a degree of constructive challenge when needed. Always take the time to think, you know?
So, before you go to an appointment, sit and think about what your questions are, what’s happened to you, what you really want to know. Because it’s very easy to go into these appointments and come out actually in a blur and not really knowing what was said, and they haven’t answered the questions that you wanted. And there were times where I had a couple of appointments and I’d come away going out I just feel a bit dissatisfied that they’re not understanding just how difficult some of this is, because one of the things about my condition is I look fairly healthy. Exercise helps me. There were times when I was, you know, really quite fit. So I looked outwardly great, but inside I was broken. And I would sometimes write a letter and I would go in and say: “Look, you know, regarding the conversation, I’ve written a letter, I want you to read it after I’m away and think about it.” And then I would come back and we’d go through the questions. So, I think you need to do all of those things because sometimes it’s easy to look at the people with all their expertise and just how busy they are, and just move into a mode of “I don’t want to trouble the doctor. They’ll know best. Thanks very much for what you’ve told me.”
And, you know, I used to sit and when we were doing face-to-face appointments, I’d get my bloods done and I’d have to wait an hour or so for my results to come back. And I would sit, and the number of times I would see people come out of the room, the consultant room, and looking confused, and they wouldn’t really leave. And I would say: “You know, what’s up?” – “Oh, we don’t really know what the doctor meant.”, were a bit confused. “Well, go back in!” – “Oh no, I couldn’t, I couldn’t bother the doctor.” – I said, “Yes, you could! Yes, you could! They’ll probably, he or she will probably be more upset if you go away with confusion or let’s get one of the nurses and they can help you.”
Because that was the tendency. People tend to get home and then go; “I don’t know.” And I certainly used to do that as well. I think the biggest thing is you need to take control of your conversations.
Absolutely. And that can be quite intimidating, right? And after all, especially after a couple of years, you could probably call yourself a patient expert. And that’s a way better expertise than probably the physician’s expertise, because, as you said, you’re living in your own body and you’re experiencing everything. So, you should be listened to.
Yes.
Now, you mentioned, patient advocates and patient advocacy, and I’d like to come to that bit because you focused on patient organizations and making people aware. How could patient advocates support other people? And how did you become involved with Blood Cancer UK? You’re serving as a trustee, and what does this role entail?
Yeah. Well, I suppose, for me, it started initially, the Fire Service is a very charitable organization. And so when I was diagnosed, I’d never heard of a stem cell transplant. And initially there was an organization, Anthony Nolan, which I’m sure you know, the blood cancer stem cell charity. And I had a conversation with them, thinking we could raise some money for them. I’ll do something. And what I realized was there was a desperate need for stem cell donors. And then we set up a partnership with the Fire and Rescue Service and Anthony Nolan, where we talk to young people about joining the stem cell register. So that first got that conversation about what I can contribute as a patient, you know, and over the years, we’ve put 20,000 people in the stem cell register and we’ve had 112 potentially life-saving donations.
And I thought that was it. That would be me, you know, retired now. I was doing a bit of that. That was helpful. But then Anthony Nolan had a conversation about, you know, they were setting up a patient involvement panel. Do you want to speak to some consultants about it? And I spoke to them to say, you know: “This is what I think as a patient, etc. etc. Like I said. This is, you know, this is where, the things I think are important. Things that are often discounted, you know, patient-reported outcome measures. No one really asks how you feel. They just talk about your bloods. No one actually records that. That’s not fair.” And during that conversation I said: “I’m quite interested in this patient involvement. I hadn’t heard of it before, but, you know, it’s clearly important. Who who’s really good at it?” And they said: Oh, Cancer Research UK are really good.
And so I ended up, I joined Cancer Insights Panel with them, and that was one of the best things I ever did because it’s an unbelievable privilege to sit with people, listening to them share their stories. There’s a broad section of people affected by cancer. It was patients, it was parents, some of whom sadly passed away. And it was tremendously empowering. And also during that I realized “Oh, wait a minute. Maybe I’ve got something to offer because with my background, I understand risk, I understand strategy, I understand how to deliver things.” And we were on the Research And Strategy Panel. So, you know, you’d be having conversations with them about what the strategy looks like, etc. And because of that experience of patient involvement, it led me to really reconsider where I was and to think: “Actually, maybe I’ve got something to offer.”
And as a result of that I joined, I went through quite a difficult selection process to join my local health board as a non-executive director, and in that you could bring in the patient voice, along with all the other skills I have. Because we oversee the delivery of health services through the lens of our experience, and part of that is as a patient, and also look to do patient involvement with other organizations. And one of those was Blood Cancer UK, who, in the middle of the pandemic, and you can imagine how terrifying the pandemic was for me. I basically didn’t leave the house for three years.
They were deciding doing a piece of work to get patients to help prioritize their research priorities. You know, to go back and say, you know: “Validate this. This is what our clinicians and our experts across the UK and beyond think is important. We want to know, do these align with what patients want?” And I was so impressed with the way that they did, the way they prioritized the patient voice, the way they supported us, and the way that they actually run their events. That bit about how they made us feel as patients. I was so impressed with that. And at the same time they were advocating really clearly about how people like me were supposed to get groceries delivered, how do we get access to the care that we needed. There was no antivirals at the beginning of the pandemic, as you’ll remember. It was basically, and no information of what it meant for immunocompromised.
We just got a letter saying, you know, even before shielding started, my hematologist said to me: “Listen, I know we tell you every year, you’ve got to lock yourself away because of the flu and everything, you know, during winter. You’re gonna have to do it now, and you know what shielding is because you’ve done it before. You’re gonna have to.” And then a month later, the shielding guidance came out. And all of that, Blood Cancer were in the middle. As information was coming out from government, I could go to Blood Cancer UK and I could see it translated into what this means for you as a blood cancer patient. So that give us certainly a warm and fuzzy feeling about Blood Cancer UK and a deep affection for them.
And then, once I’d had that connection, they advertised for trustees or for new trustees. It was four of us joined, and I liked the opportunity to do that. And then, you know, as a trustee, it’s quite similar to being a non-executive on a health board where you’re overseeing, helping set the sense of direction, making sure the public, the money that the public works so hard to raise is spent appropriately. You’re making sure that what the organization does is in line with the strategies and charity laws and everything else. And then, in addition to that, you’re offering your support and guidance, which is the same thing happens, where, if you’ve got potential skills that you can support them with you can. And how I describe it is we’ve got our nose firmly in the business to see what they’re doing to make sure it’s appropriate. But we keep our feet out. You know, it’s not our job to run the organization. It’s just to make sure it’s been done properly. And that has been tremendous.
And even now I chair their Research Governance Committee. First patient in the history ever to chair their Research Governance Committee, and I think that’s unbelievable. What better statement of what Blood Cancer UK feel about the value of patients and the patient voice than to having a patient chair the panel that decides where they are spending their money on research, which is tremendous. And that’s going to expand to look at some of the mission stuff, you know, elements of it as well.
And it’s been amazing. It’s been so good. And I get to see all the time, I have this thing in my head; words, actions and attitudes of all. But to see the same thing, there are lots of people who write, you know, either our staff or patients are the most important group of people, but then their actions or their attitudes look different. And I know when I’m with people from Blood Cancer UK that their actions, what they write down and their attitudes towards patients and the importance of the patient voice are consistent and true. So, I love it.
Sounds perfect. Now, we spoke about patient advocates and patient involvement. And, in a nutshell, so what does patient empowerment mean to you personally, especially given your collaboration with charities and your role as a trustee? I think you basically answered the question already, but just in a nutshell.
Yeah. Well, you know, I think, it’s that. But back to what we said earlier on about being an expert through experience. What patient and public involvement means, there’s two parts, but one is that you sit alongside a clinician or, you know, strategist within a medical research charity, with an equal footing. And you share what matters to you in a way that they consider and factor, you know, “this is actually the scientific perspective”. And that’s really important. And I think it brings validity and agency to people who are often unheard, particularly when you think about people who have suffered deep inequalities because of their condition or already suffered deep inequalities because of their life condition, and then now their health condition makes that even worse.
And as one of them describes, a fabulous lady I cone had a conversation with, and she had multiple disabilities. She was from an ethic minority and living in a deeply deprived area of London. And she said: “It’s not that we are seldom heard. I think we’re just easy to ignore.” And I think sometimes patients, and particular patients in particular circumstances, are easy to ignore because they don’t get the face time, they don’t have the agency. They need to have conversations with people of influence. And that’s why I think patient involvement is all about. It’s about really bringing together the experience and living circumstances of people affected by the condition, put close to the people who are designing treatments or thinking about what is an important research perspective, what others, and that makes a difference.
You know, I chair a patient involvement panel for Cancer Research UK, and I sit on two of their funding committees. We sit as an equal to these international scientists round the table and say: “Actually, no, the patient involvement design here isn’t good”, or “They haven’t really. It’s an afterthought. They’re ticking a box about patient involvement. They’re not really asking people what they think.” And that’s what is. And then as an individual, for me, it’s been completely transformative because it was patient involvement that led me to think about something to offer. It was patient involvement that led me to have that sense of purpose, which a lot of people use to make their life experience better. I think two things really mattered to me, that helped me is purpose and perspective. I’ve got great perspective from the Fire Service.
I don’t spend a lot of time feeling sorry for myself because I’ve seen people on the worst day in their life, and they didn’t expect it, and they didn’t have the opportunity to say goodbye to family members. And I’ve got a sense of purpose that the Fire Service gave me, and that now patient involvement gives me, and I can see, particularly for people who are in quite desperate circumstances, sometimes just the ability to feel they’re making a difference helps them. So, I think what I always say to people is: “Don’t just think about what you’re trying to achieve organizationally. Think about the difference it makes for the individuals to be able to share their story, to feel listened to, you know, to feel heard, to feel that they’re no longer easy to ignore.
So, I mean, I think it’s a tremendous, I mean, I think it’s beyond that, isn’t it, it’s an essential. It staggers me when people think they can go about a process of research or deciding what’s important to patients without asking them about it, you know, without, “we’ll decide what matters to patients without speaking to them. We will decide an arbitrary, you know, here’s how long you should wait in hospital, or here’s your waiting time for the treatment” rather than actually: “How did that make you feel?” Would you rather have waited a bit longer and got a better answer than being rushed out the door before you have an arbitrary time? So, there’s lots of bits about it, but I think involvement is one of the most fundamental things that we should be doing in everything.
Absolutely. Well put. Now, in your opinion, what needs to be done to beat blood cancer?
Yeah, I think there’s lots in here, isn’t it, and I think in Blood Cancer UK we thought really careful about “It’s time to beat blood cancer”, because we thought “what does that mean to people” when actually, is it realistic, and we genuinely think it is. I think, for me personally, it starts with there are some phenomenal clinicians and there are some phenomenal treatments thanks to the incredible researchers that are out there. So, it starts with making sure that those are delivered equally no matter where you are in the country. So, actually, all our existing treatments are accessible. They should all be delivered superbly well and consistently well, and they should be available to as broad a section of people as possible.
Clinical trials, which are often the last chance for a lot of patients, we need those to be well signposted, easily accessible. It shouldn’t be, they shouldn’t rely on your ability to read English, your ability to string a sentence together. Whether you can find out about clinical trials and then persuade your clinician that that’s a good idea. So that needs to be done consistently well. It needs to be open particularly to minority ethnic groups that we know that they struggle sometimes, and particularly people in lower groups of deprivation. Sometimes their reading ability isn’t the same, so their ability to find information or their ability to access digital sources of information, that needs to be good. And then the research, we need not just an increase in spend generally supported by governments, but we need that consistent collective view with patients at the heart of it, about how to shift the needle forward. What we can have is lots and lots of medical research projects all doing roughly the same thing. We should have a consistent view of how we can help each other across.
Beating blood cancer is a big elephant. And I’m not advocating eating elephants, but it’s a big elephant, and we’ve got to eat it, right? There’s bits that Blood Cancer UK should eat, bits that Cancer Research UK should eat, bits that others should eat. We should all have a feast together to see how much we can do. And there’s bits that belong to governments and others that actually we should have a keen eye on and we should understand what it means to patients when they make a change. But we should be spending our whole time using that influence to say: “You need to get on with that part.” And if we can do that collective bit of action, then I think that’ll make the difference.
So, Blood Cancer UK, you know, we’ve got 23 million pounds, I think, just now invested in research projects. We have a collective view of what does that mean by patient group, by age, by condition. How broad are we putting that? We invest money now and thinking about fellowships for researchers who are growing that relationship together so we can start to collectively understand each other’s problems. and so all of those bits together, you know, the relationship, the researchers, what the researchers are doing, the amount of funding that’s going in, our broad understanding of conditions, working across borders, you know, so internationally. So, we need to make sure that we’ve got people going to the international hematology conferences. Growing those relationships is really important.
And then all of that needs to be underpinned by understanding the patient experience and understanding how many patients suffer purely because of their background, be that their ethnicity, religion, or, you know, ability to read or speak English, or where they’re located. If you’re in a health board area or trust area that doesn’t have an expert, that doesn’t have a relationship or doesn’t have a particular budget available – that shouldn’t be the case. So, we need to understand that inequality, and part of that is by this bit we’ve been speaking about, about empowering patients to understand what they should expect, and then to be confident to go in and challenge until they get it.
Sounds like we already beat it. But I really think, well, you know, I can see we’re making progress all the time, but there are people, you know, for me, I was diagnosed, is it 16 years ago, I was told I had three years to live. There was only one potential cure at the time, which is the stem cell transplant. Today, there’s still only one potential cure. And so for 16 years, I’ve been told: “Just hang on as long as you can. There’s a cure coming. There’s a cure coming. It’s not there yet.” So, there’s still a lot of work to do. But I feel really optimistic when I see the differences. I have conversations with researchers which leave my jaw on the table. What they is unbelievable. It’s beyond anyone’s normal understanding. And that fills me with optimism that we’re moving forward.
Sounds good. Well spoken. Now, this leads me to my last question, which is what are your plans or Blood Cancer UK’s plans for the upcoming awareness month in September? What is going to happen?
Yeah, well, I think Blood Cancer UK always have a phenomenal period of activity, and I would recommend anyone to keep an eye on the website. If you don’t, follow them on Twitter or social media, then they should because they have a series of action and activities. And the focus of those will be about growing awareness, you know, because we need people to understand what the symptoms are. We’re still in a position that the vast majority of patients like me experience a delay in diagnosis. It took me eight and a half years to be diagnosed from when I first went to my doctor.
There are still far too many blood cancer patients who are diagnosed as a result of attending an emergency room because they’re so unwell. And then they go: “Well, the reason you’re so unwell is you’ve got blood cancer.” And we need to get beyond that so that people understand what the symptoms of blood cancer are. People then would be more empowered to go to the doctor and say: “Listen, I think it’s a bit like, these symptoms all seem to be the same. Do you not agree?” And I don’t want to spoil anything, but there will be a series of activities that involve, that’ll show the patient voice. So, they’ll have phenomenal researchers explaining what blood cancer is and the difference that they can make.
Personally, I’ll be doing what I normally do on my Twitter, or X, as it is now, which is try to make, grow awareness, share my experience as a patient, and help people to understand what blood cancer is because there’s still far too many people, even after they’re diagnosed, that aren’t told: Oh, it’s a blood cancer they’ve got.
We’re pointing people to Blood Cancer UK as a trusted source of information and patient advocacy and support because alongside the research that Blood Cancer do, they also do phenomenal work supporting patients. You can phone in, there’s not only various forums that you can join to speak directly to patients about their experience, but we’ve got clinical nurse specialists and others who are available to provide support and help when you’ve got a question or a frustration about the way you’ve been treated. And also, it’s a great place to see what’s happening in terms of the future.
Excellent. That sounds great. I wish you all the best for the awareness month. And I thank you for your time and for your insights. It’s been an absolute pleasure speaking with you, Ally. I’ve really enjoyed it and I learned a lot, as always. Thanks a lot to you.
I enjoyed that, Alex. Thank you very much for having me on.
My pleasure. Bye-bye.
Bye.
For this episode of Karger’s The Waiting Room Podcast, we spoke with Roger Wilson. He is a sarcoma patient, patient advocate, founder of Sarcoma UK, as well as Honorary President and active Board member of the Sarcoma Patient Advocacy Global Network (SPAGN). We talked about his patient journey with soft tissue sarcoma, his work as a patient advocate as well as Sarcoma Awareness Month in July, with this year’s motto being “The importance of early and correct diagnosis”.
Since being diagnosed with a soft tissue sarcoma in 1999, Roger has undergone ten operations, chemotherapy and radiotherapy. He currently works with a range of organizations and academic research groups in the UK and Europe. Furthermore, he has honorary doctorates from the Universities of Sheffield and Lancaster in the UK.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Good morning, Roger, and welcome to the Waiting Room podcast. Good to have you here.
Good morning, Alexander. It’s lovely to be here.
Now, first of all, could you please tell us a bit about yourself, your patient journey with soft tissue sarcoma and how this led to the foundation of Sarcoma UK and your activities as a patient advocate?
Well, I was diagnosed, first diagnosed with the sarcoma back in the previous millennium, in 1999. It was diagnosed as a mistake, which was then recovered by a second surgeon who worked to a proper diagnosis and did a proper recovery job. But then the tumor, which was on my lower leg, recurred in the lymph system, metastasis in the system. So I had further surgery, another recurrence, which wasn’t surgically treatable, and I had chemotherapy. So, in the course of 18 months, I had three surgical procedures and chemotherapy on a palliative care clinical trial.
Fortunately, that’s put me into remission, and it was another seven years before I had further problems. It recurred in the lower leg and I had an amputation at the lower leg. But then, three years after that, I had a recurrence in the lymph system and had further surgery, two operations, then radiotherapy. But, unfortunately, this didn’t hold it back either. I then had metastases found in my lungs, which is not a good indication for sarcoma patients. Fortunately, they were found very early and I had surgery with a very good surgeon in London who put me into remission again, and that was 2013. So that was after 14 years of treatment on and off, and I’ve had no further treatment since.
So, I’m very lucky. So that’s my personal journey with the disease. But it was in 2001, after I was recovering from the chemotherapy that I began to get involved with research into sarcoma. I first of all joined a local group. Nothing really much was happening. There’s a lot of talking and a lot of good ideas, but no real foundation for actually doing serious research. And I then joined the national group, which was run by the National Cancer Research Institute. And there I met several of the leading researchers and clinicians in Sarcoma in the UK and began working with them. It was one of them, Professor Ian Judson, who actually said to me one day: “One of the things we need in the world of sarcoma is a dedicated patient charity.” And that resonated with me. I don’t know quite why.
And it was in 2003 that my wife, Sheelagh and I sat down and said: “Well, we’ve got to do something about this.” And we started Sarcoma UK, as the legend has it, around our kitchen table. And it’s true. We started by creating a newsletter so we could reach out to patients and the specialist doctors around the UK happily distributed that newsletter. And then we found patients of course coming into contact with us. We had the funding to do more newsletters. We branched out into writing leaflets. There were information leaflets available to the clinicians, and then we moved into running support group meetings. We focused initially on GIST, gastrointestinal stromal tumor, which is one of the commonest sarcomas, and that was funded because of Novartis’ interest in promoting the drug imatinib for the treatment of that sarcoma.
And so we moved forward. I’ve been also involved at that time in the wider development of patient involvement in cancer research, working nationally. It all ground to a halt in 2007 when I had my recurrence and the amputation. I had to give up the national work. But Sarcoma UK became my primary interest. We worked with the clinicians on developing the British Sarcoma Group. We created a research charity which we called the Sarcoma Trust, and we were working on a very broad fund by then across the whole area of advocacy and so on with sarcoma.
The challenge, I suppose, came anew when we realized that if Sarcoma UK and the other things we were doing were really going to go anywhere, we needed to be based in London, and we lived, I lived still out in the West Midlands in a very nice part of the country. So, with working with the other patients that were by then involved with this, we created a business plan for a new Sarcoma UK. But we needed money to make it happen. And then we found ourselves with a philanthropic donation, and the donor very kindly agreed to allow us to use the money they were donating to us to develop the charity, move it to London, get some professional staff in, particularly on the fundraising side, so that in 2011 we relaunched Sarcoma UK, the new Sarcoma UK, if you like, bringing together Sarcoma UK and the Sarcoma Trust. GIST Support UK had by then been created as a separate charity so that also existed. And the British Sarcoma Group became a charity in its own right.
So, we suddenly had a spread of organizations in sarcoma and that vision that Ian Judson had of having a patient-led sarcoma charity was really beginning to take shape. And Sarcoma UK under professional management, first from Lindsey Bennister and then more recently with Richard Davidson at the helm, and some very good trustees and the chairs of trustees have been magical in in the way they’ve supported the executive team. We now have a charity which is raising around GBP 3.5 million a year and investing a large amount of that into research. It has started work on the helpline. now, I think. eight years old, which I think is the big, big step in terms of supporting, actively supporting patients.
And it left me free once when 2011 had come to start thinking about how I could do more work with Sarcoma Patients EuroNet, which we had created a few years earlier, but which was moving forward very slowly in a very considered way. We started it with 11 organizations as members. It’s intended to be an umbrella charity, allowing support groups and advocacy groups in sarcoma to come together and work together so that, you know, we can pull resources and we can use our energies in a collective way. And over the 15 years that SPAGN has been running, now it’s the Sarcoma Patient Advocacy Global Network, we now have some 70 member across the world, in most European countries, in America, Canada, Australia and some parts of Asia. And two members in Africa. It’s a start in these more distant parts of the world, but we’re getting there.
So, advocacy has been sort of welded into me, if you like, from the very beginning. And my activities as a patient advocates are right across the board. I still work on individual activities in the UK. I’m working on one clinical trial, for example, a surgical clinical trial. And at the other side I’m working with American advocates and developing a paper on a worldwide basis for publication to hopefully help move things on in every country in the world. So, it’s a it’s a wonderful life to be part of.
That’s excellent. Many thanks for the overview. That’s quite an astonishing story of the foundation of the association and what you did as a patient advocate. Now, I was wondering, especially since there are quite a few different kinds of sarcoma, why are they often overlooked?
Well, it’s, fundamentally, because they’re so rare that a family doctor – we worked it out, actually, based on the incidence statistics in the UK and Scandinavia –, but a family doctor is probably only going to see one patient in their whole career. And that’s, you know, astonishing. It’s only around 1% of all cancers. So, in our local family doctor practice, you know, I was diagnosed 25 years ago, but based on the incidence in the country there will only have been another eight patients in those 25 years diagnosed in that practice. In fact I know two or three of them, which is another factor.
So, the challenge is, first of all, getting people to recognize that the sarcoma is present in a patient and then, of course, you run into the issue of what kind of sarcoma is it, and why is it important to distinguish between sarcomas? But they can appear anywhere on or in the body, from the top of your head to the tip of the toe. Inside or outside. And they have different characteristics in terms of how they present so that some are very infiltrative and some grow in a more capsular manner, for example. They affect virtually any kind of tissue except visceral tissue. So, it’s connective tissue. So, the bones, muscles, tendons, nerves all can have sarcoma associated with them. So clearly there are then different genetic mutation characteristics as a result of that origin.
And of course, the mutations can often be individual to a single patient. Two patients can have what appear to be identical diagnoses of a tumor. But if you get into the mutational analysis, they may have different driving mutations or mixtures of driving mutations, and that presents huge challenges in terms of treating advanced disease in particular. Primary disease is always best treated with surgery. So, it’s a very complex arena for doctors to be in. And you can’t expect a general practitioner or even a general surgeon in a centralized hospital to be fully capable of handling them. They need specialist care. So, the challenge, again, is quite often getting patients to a specialist.
I see. And that nicely ties in with this year’s Sarcoma Awareness Month motto, I think, because it is “The importance of early and correct diagnosis”, which is probably key, as you mentioned.
Yes. So, one of one of the disturbing bits of data that came out of when we sorted out the registry, the cancer registry here in the UK, was the percentage of patients who were being initially diagnosed in Accident and Emergency. You know, they presented with pain, usually, in A&E and were diagnosed with advanced sarcoma quite often, basically untreatable. They were on a, you know, pathway which was not one that we want to see people enter. And even those that were treatable were, you know, often had a poor prognosis. So, it was about between 24 and 25% of all sarcoma patients were being diagnosed through that route.
So, you really have to then ask: “Why does that happen?” And it’s a very, again, very complex area to analyze. So the importance of early and correct diagnosis is essentially to get people treated as quickly as possible so that we avoid people being diagnosed with advanced disease at the time of their first diagnosis. That’s the key to it. If you look at the statistics for sarcoma, broadly speaking, 50% at five years are survivors. And if you look at why they survive it’s because they were diagnosed earlier and they had good quality surgery from people that knew what they were doing. And there had been supportive radiotherapy or chemotherapy, but generally speaking, the central plank of their treatment has been surgery. So, let’s focus on that. If we’re going to change the survival statistics, early and correct diagnosis followed by expert treatment is the key to it.
I see. I’ve also come across the Global Sarcoma Diagnosis Pathway Survey. Which role does this survey play in this regard?
Well, it’s going to help us understand a lot about the diagnostic pathways in different countries. We’re going to be able to look for commonality. You know, are there common patterns of behavior appearing, for example, from family doctors or from surgeons in secondary care who are going to likely be the first person referred to. They may or may not be specialists. In which countries is the route to a specialist easier than others? And that gives us a target for how advocacy in that country might develop. And, you know, overall, the data we’re going to get from this because we wanted to have as many respondents as possible. So, if you’re listening to this and you are a sarcoma patient, please look for this survey, the Diagnosis Pathway Survey, and fill it in, complete it for us. It’d be really valuable.
Now, what could be done to improve the survival as well as the quality of life of patients with sarcoma? You just mentioned the survey and how it could help. And I was wondering to which extent do digital technologies play a role there? And I’m talking about e-health, for example.
I think what’s happening around the digital world and the data world generally is potentially very exciting. I think if you want to look at the issue of data and improving survival and the quality of life, there are a number of areas which we really want to move on. One of the areas that isn’t where we need treatments is in this maintenance of remission. So, when a patient has surgery, some patients will get advanced disease. Sometimes that’s predictable because the surgeon wasn’t able to completely excise tumor tissue, for example. But in other cases, it’s just the nature of that particular sarcoma.
But if we had maintenance therapies which supported patients that were in remission from surgery, effective maintenance therapy that prevented recurrence, that would be a really valuable addition to the armory which our oncologists have. Now I’ve said that improving survival is probably principally about surgery, but patients do get advanced disease. So those are the patients we also need to find effective treatments for.
And that’s where I think the digital world supporting research, supporting the understanding of the genetic makeup of sarcoma and how we might be able to use techniques such as immunotherapy, which is only really just being explored with sarcoma, even though it’s extensively used now in other cancers. You know, how that can help improve the length of life and also the quality of life during that extended remission or extended survival. And here again, I think patients play a part because we’re nagging our researchers for doing much better quality of life reporting. Now, if patients report their quality of life, patient-reported outcomes, we get a better picture than surgeons or oncologists observing the patient and recording measures, whatever they are, from their observations. So, patient-reported outcomes are a key part of ensuring we understand what quality of life is and what it means.
And of course the best way of getting them is through people doing simple questionnaires, for example, on their smartphones or on the screen, on a web browser. And then you’re generating data, more data, quite often lots of data, all of which piles in and hopefully contributes to the picture. But we’re not, as a sarcoma community, actually collating all this data. We’ve got good data, for example, in cancer registries, and some of them are very open to research and we can get good data out, but we can’t match that data with the performance-reported outcome data, which a particular research study has delivered or which is coming from a follow-up study in, you know, hospital X. We can’t bring that all together at the moment. And we need that.
And the digital technologies, ultimately, if we can get hold of the data and create data hubs and mega hubs which allow data to be brought together and matched, we’re going to get a lot of information that we can use to help improve the life of patients. We have a very interesting study which SPAGN is involved with, which is called STREXIT 2, and it’s funded by the European Commission. It’s run by the EORTC, and we’re one of the partners in it. And STREXIT 2 runs alongside a study in retroperitoneal sarcomas called STRASS 2. So STRASS is actually about treatment, and STREXIT is about what happens to the patients that decide not to be treated in the clinical treatment trial, or patients that were not going to be treated in the treatment trial at any rate. Let’s get all their data too and let’s then match patients for analysis between the clinical study and the non-clinical observation study so that we build numbers.
And numbers is critical when you get to data analysis. And this treatment study is probably going to only accrue 500 patients in five or six years. So, it’s going to take a long time to get to any meaningful numbers. But putting it with STREXIT 2 and bringing the two sets of data together, we can hopefully get much more significant numbers. We can drive the statistics so that they do get to be significant, and we get a result quicker and more accurately from using data. The real world data of one group of patients and the research data of another group of patients. So, these kind of new ideas and new approaches are really important to the way we can develop and deliver better survival and quality of life for the patients.
Definitely. And you mentioned research now a couple of times. How do the results of the data you like to accumulate reflect on research or how does it improve research? And how important is research overall In the case of sarcoma?
Sarcoma is totally reliant on research. We can only move forward really through the efforts of the clinicians and scientists and patients who contribute to research and who undertake it. The issue of new drugs, new treatments, for example, is fairly simple to identify. It is quite straightforward in some respects and is of course coming largely from the pharmaceutical industry, although some work does happen in the academic research world. But it’s the wider picture of the world of sarcoma, which we also need to consider in research. I mentioned the study that I’m involved with here in the UK. That’s a surgical study using a new technique in surgery to hopefully improve the quality of the surgery and the clinical outcomes as a result. And that’s being watched very carefully by the whole world to sarcoma, because if that study produces a clear result that this technique is of value, people will be very quick to pick it up and run with it all around the world.
So, that sort of thing is really important. In SPAGN we’re also involved in prioritizing or trying to identify priorities in research. We have a major study underway which is coming through the Netherlands, where we’re looking at what patients regard as the priorities for clinical research and research into quality of care. So these sort of ideas are the way we’re going to move forward, the way we’re going to get better and deliver better outcomes for our patients.
Excellent. Now, in your opinion, which role do patient advocates and sarcoma community initiatives play nowadays as compared to ten or twenty years back when or even when you started it? And what needs to be done to further strengthen this position and to empower the patients even more?
I think the big thing that we can identify now is partnership. As patient advocates, we’re not there to stand on a platform and shout. You know, that might be a traditional view of advocacy. We’re there to work with other patients, other communities, and, most importantly in sarcoma, with our professionals, with our expert doctors. If we can work together, we empower them as well as ourselves. We learn, they learn, and we can start acting together.
And we’ve done this in the UK now for many years. It’s happening in Germany, it’s happened in the Netherlands as well. And in France there’s been some extraordinary things happening and, you know, they’ve done things that none of the rest of us have even been able to try. But that’s the beauty of watching the world of advocacy from a global position, if you like. So I think the key word is “advocacy is about partnership”. And we can work with doctors. We don’t have to work against them and we don’t have to shout at them.
I see. Now, and this leads me to my last question. So, last but not least, what are your plans for this year’s Sarcoma Awareness Month in July, what our Sarcoma UK’s plans and what are SPAGN’s plans? Maybe they are all the same, but I thought I’d ask.
They’re virtually the same [laughs]. Yes. The key issue is the importance of early and correct diagnosis and of initial treatment from an expert surgeon. Someone that knows what they’re doing, knows the different kinds of sarcoma and the kind of behavior, physical behavior that they can deliver. So, diagnosis is right at the heart of it. And in SPAGN we’re going to be quite active on social media. We’re going to have some special blogs on our website, including one, for example, thinking about how AI, artificial intelligence, is developing in the research world and the contribution that that might make to our scientific research community.
So we’re not narrow; we’re keeping some breadth to it, but it’s principally about awareness of the importance of that first early correct diagnosis. And Sarcoma UK has identified that. Bone Cancer Research Trust in the UK is following a similar line, and I think other sarcoma groups individually will also be taking that line as well. And hopefully SPAGN can help energize everyone to get that diagnosis survey out. That’s part of it. You know, we really want people completing that survey for us so that we can have a record. They’ll be anonymous so they don’t have to name themselves, but we want their data. Please.
Okay, that’s a perfect ending of the interview. Please take part in the survey, and thank you, Roger, for your time and for making this happen and for your insights. As with every interview, I’ve learned a lot, this time about sarcoma. Thanks a lot for that, and I wish you all the best.
Thank you, Alexander. As you probably gathered, I enjoy talking about sarcoma, so whenever you want to do it again, let me know.
Definitely. Thank you very much.
For this episode of Karger’s The Waiting Room Podcast, we spoke with Mary Lynne Van Poelgeest-Pomfret. She is the President of the WFIPP, the World Federation of Incontinence and Pelvic Problems. We discussed incontinence/leakage and pelvic problems, the aspect of quality of life, stigma and mental health, as well as the upcoming World Continence Week, which is held from June 17–23, 2024.
Lynne is also a long-time international patient advocate and a member of various scientific advisory committees and panels. Furthermore, she is a member of several patient advocacy movements and organizations such as IAPO (International Alliance of Patient Organizations) and EPF (European Patients’ Forum). Lynne has a BA degree from the UK and a Drs. degree from Leiden University in the Netherlands.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Episode
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Transcript
Hello Lynne, and welcome to The Waiting Room Podcast.
Hello, and very nice to be here. Thank you.
You’re welcome. Now, first of all, please tell us a bit about the World Federation of Incontinence and Pelvic Problems, or WFIPP for short, and your own work as a patient advocate.
Well, WFIPP, as you say, the World Federation, was founded in 2006. We were founded in Rome, in Italy, I’m one of the founding members, with the basic idea to provide a patient voice, patient perspective, globally, for all people suffering from any form of incontinence. So, that’s urinary, fecal incontinence and any form of pelvic floor dysfunction. We felt there was a great need. There were many gaps, and that is our role as an umbrella organization. We are a federation of national patient and other organizations who’ve been joining in the years, and we’re now basically the platform when it comes to representing patients, families and so on.
Okay, thank you. And what about your own work as a patient advocate, also for other organizations and panels?
Well, I became the president of the WFIPP a few years ago. And of course, that in itself brings a lot of connections with the ever-increasing network. And as a result of that, I now got several hats on, if you like. One of them is part of the EFPIA, the Pharmaceutical Trade Association, the Patient Think Tank, and I do quite a lot of work there, actively taking part together with my colleagues, patient advocates and pharma, medical devices as well.
And the other hats which I acquired along the line a couple of years ago is the co-chair of the European Health Coalition. And I share that chair with Nathalie Moll, who’s the CEO or Executive Director of EFPIA. So that takes me to Brussels at least once or twice per month to keep up with what’s going on in the European healthcare scene.
Thank you for the overview. Now, let’s get back to the pelvic problems or bladder and bowel issues. How often do these actually occur, also including chronic pelvic pain?
Well, just to give you a few facts and figures, and there are many facts and figures, but it’s estimated that one in three females have some form of leakage. Let’s call it leakage for not saying incontinence all the time. People don’t like the word incontinence. And one in ten men. Now, for women and young women, there’s a lot of misnomers about the causes of incontinence or leakage that it’s something to do with growing old. That’s part and parcel, which is absolute nonsense.
It very much affects young women, sporting, for example. It affects postpartum, after childbirth. There’s a very high proportion, at least 30%, of women immediately following childbirth for the first month or so have some form of leakage. Menopause, of course. There are so many reasons as to why women leak. For men. It’s slightly different. It’s usually as a result of especially prostate cancer interventions, whether that’s a radical prostatectomy, removal of the prostate, or through radiation therapy. The figure is one in ten, but figures aren’t always – they’re there.
But the fact is that all these forms of incontinence, and not to talk about fecal incontinence, which is double incontinence, so urinary and bowel incontinence, it’s such a huge burden not only on the patient, but also on family, caregivers and the like. And just to give you one indication, whilst it comes to mind, one of the main reasons why people end up in care homes is because family members cannot cope in a home environment with what incontinence entails. And, as I say, WFIPP is lobbying very hard to make sure that the treatments are out there and people know about the treatments. In a nutshell.
Thank you. You just mentioned the huge burden associated with leakage of any kind, and I was just going to ask you about the impact on the quality of life of all those involved. And also as a second part of the question, the mental health part, which I think is always very important regarding your condition.
In fact, I’m very glad you mentioned mental health, and I’ll come to that later. Mental health is big on the agenda of European health care policies, and WFIPP has taken that on board, very much so. And that will be part of World Continence Week. As I say, we’ll discuss that in a moment.
But mental health issues are huge. What happens with incontinence is that people feel very isolated. There’s a lot of stigma and taboo attached to these conditions, and that in itself starts to cause other issues like depression, loneliness, fear of going out, you name it. The impact is massive on the quality of life and not only the quality of life of the patient but also on the family members’ or caregivers’. It’s a huge burden, and it’s a huge financial burden as well, which no doubt you’ll ask me.
I was going to ask you, too. Yeah. What really interests me apart from the impact on the quality of life, what could be done to change the situation or to avoid feeling isolated? And what are you doing with the WFIPP to help those living with these conditions to overcome their situation or the fears?
One of the first things is to raise awareness, to certainly the general public. It’s a public health issue, as we know. So, we have these awareness-raising campaigns. If you know about a condition, the first thing to do is to seek help. And that seeking help may sound very easy, but in practice it isn’t, because for the average individual, as I say, these are stigmatized conditions. So, people are not very keen talking about their pee and poo issues either, even with family members.
And if you start talking about cultural issues, which also come into the equation, it gets even more difficult. Don’t forget, where a global organization, and we really, really, really try very hard to lobby for increased awareness. And we do that with various mechanisms. One of the mechanisms, which we started just two or three years ago, we started working very closely with the scientific societies because we realized that if you are a patient organization, patient advocates alone, you get nowhere fast.
So, the key there is collaboration. And how do you do that? Then you liaise and you make sure that you are there upfront with the scientific societies. And I’ll give you the example that since we started working very closely with the European Association of Urology, the International Continence Society and several other scientific societies, we’ve come on leaps and bounds. And as to the outreach of what we can achieve, so much so that for me it’s taken on massive proportions because I’m now a board member of the Official Patient Office of the European Association of Urology. I’m part of their advisory group, the Patient Office. I’m also now in two key guideline panels. You mentioned chronic pelvic pain. Well, I sit on that guidelines panel, and I sit on the female urinary tract infections, which again is a huge issue.
So, we have official functions now which really help to gain far more traction, if you like, in as to how we can help others. You have to be there at the top, let’s put it that way. It’s the only way that you get listened to and heard. And now we’re asked to go everywhere, which is a good thing in a way, except that we’re a fairly small organization as yet bursting at the seams [laughs]. So, we really need to do a lot more than we do, but we’re getting there.
Absolutely, that sounds as if it’s heading in the right direction, because patient involvement or involvement of patient groups is very important. Now, let’s get back to World Continence Week. I saw that your main themes, and we broached some of them, are “Shared Decision Making”, “Incontinence and Mental Health”, which you already addressed, and “Commitment to Collaboration and Continence Care”, also called the 4 Cs Project. Could you tell us a bit more about these three pillars?
Well, I’ll start with the “4 Cs Project”. This is a project which we started working on, brainstorming a couple of years ago with our Spanish urology colleagues, with the basic idea of, in a nutshell, improving and enhancing the doctor–patient relationship. Now, how do you do that? You need to ensure that the healthcare professionals and allied professionals, so the nurses, the physical therapists and so on, are well versed in communication skills and get the message across to the patient. To do that, that’s not something that you can do overnight. There’s a whole learning process in that. So, we’ve developed the 4 Cs together now with the EAU, the European Association of Urology, and others.
So we have a big stakeholder group now working on how best to work together with the doctors and the patients. We need health-literate patients. We need patients to understand what the treatment options are and have, and that comes down to the shared decision making process, how do they make decisions. The decisions are there, shared together with their treating physician or whoever it may be. So, that’s the essence of the four Cs, which is a very novel sort of project. And it’s not just applied to urology, it can be applied to any pathology as such, but that’s something that’s in the process of, right now, getting the modules together to train patients, patient experts who in turn will train other patients. It’s like a sort of rolling stone gathering a lot of moss [laughs].
I see. And I think the health literacy part is really, really important, especially nowadays. Does that also involve plain language and plain English summaries?
Yes, quite definitely. You mentioned the European Patients’ Forum before. We work very closely with the European Patients’ Forum, EPF, and PFMD, the Patient Focused Medicines Development, on these language summaries, plain language summaries. It’s no use talking to a patient or family caregiver in language that they’re not going to understand.
But again, don’t be pedantic. It mustn’t be too childish, and there’s a happy medium. And that happy medium, it’s not easy. But it’s something which, of course, to the end user, the customer, the patient, it must be understandable and the options must be put on the table so that together you can make a decision as to what’s the best course, line of treatment for that particular individual. So, it’s not a one size fits all.
Absolutely. I totally agree with you. Now, as we are approaching the end of our interview, my last question to you is: What are WFIPP’s as well as your own plans for the upcoming World Continence Week. As far as I recall, maybe each year, but at least I remember from a couple of years back, you had a whole week of seminars and plenary discussions and panels going on. What’s planned for this year?
Yes. That’s exactly the same. At the moment we’re working hard on having a whole schedule of webinars on different topics, whether it’s chronic pelvic pain, overactive bladder, whether it’s stress urinary incontinence and so on. That’s in the pipeline at the moment. But in addition to that, and it’s on our website, the WFIPP website, we’ve developed a whole set of graphics per theme, and those graphics can be used freely across the globe during that week with those particular themes. So, that’s a kind of tool, if you like, which is universally used throughout the world with those main topics. And I think they look quite good this year. We worked hard to produce something that looked a little bit different. So, anyone can find those on the WFIPP website, the World Continence Week 2024, which takes place officially from the 17th to the 23rd of June. It’s always the third week in the year.
And apart from that, of course, all our sponsors and others will use that week to do their own campaigns as well. So, it’s not just WFIPP. It starts with WFIPP, but it’s gone far beyond us, and we hope will get millions of people, literally, because it’s over 400 million people worldwide who have these issues. So, that’s big.
Excellent. Many thanks. That sounds interesting. And I had a sneak peek at the infographics. I think that they’re very well done and perfectly do the trick, and I wish you all the best for the upcoming awareness week and the work associated with it. And many thanks for taking the time and for shedding a bit of light on the work of the WFIPP. Thanks a lot, Lynne.
Thank you, and I hope it helps. Thank you.
Definitely. Thank you. Bye-bye.
For this episode of Karger’s The Waiting Room Podcast, we spoke with cancer survivor and patient advocate Naniki Seboni about her experiences of being diagnosed with stage 3 malignant melanoma at the age of 25. We also discussed what should be done regarding prevention, screening and awareness of skin cancer – not only in her native country of South Africa, via the Cancer Association of South Africa (CANSA), but also in the rest of the world.
Please note that Skin Cancer Awareness Month is held in May each year.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Episode
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Naniki, and welcome to the Waiting Room podcast.
Thank you. Hello, Alex. Thank you so much for inviting me to be a part of the session.
My pleasure. Now, first of all, please tell us a bit about yourself and your patient journey.
Yikes. So, I was diagnosed with stage 3 malignant melanoma in 2015, and my whole life changed, you know. I went from someone who had sensitive skin, you know, when I was exposed to excessive sun exposure, to somebody who was now dealing with a life-threatening cancer diagnosis. And I have to tell you, you know, the pre-cancer Naniki was fearless, she was ambitious. And then the post-cancer Naniki started to live her life on purpose. So, there was definitely a huge change in my life in terms of how I was before the cancer, how I was after the cancer as well.
Yeah, so my journey, my journey was really, I would say, had a big focus on mental health. You know, most patients deal with the physical, you know, having the side effects of chemo, radiation. Mine was a bigger battle for my mental health.
Okay. So what was your initial reaction to that diagnosis of stage 3 malignant melanoma, which sounds pretty scary in itself. You just mentioned it shortly.
Yeah. So, my initial reaction from, you know, the doctors, you know, giving me these horrifying names, as you can imagine: I was at the hospital for a different checkup, and I just thought, “Oh, let me just head over to, you know, to Dermatology”. Because I hadn’t received my results in over a month. So, I’m literally just minding my own business, you know, casually walking to this department, and I get there and I see the doctor. I let her know: “Hey, do you guys have my results?” And she says to me: “Oh no, go and, you know, sit in a consultation room.” And I wasn’t necessarily expecting that they would have my results ready. I was just hoping that at least there would be a way forward.
So, the doctors decided to let me into the consultation room, and when I was in there, two lab coats, two white lab coats, walked in and basically became the destroyers of my life in that moment. And I knew that something was wrong from the looks on their faces. But, you know, I just thought it would be something so, so minimal. Something like, you know, I’d have to, like, to use a new ointment on the scar that I’d been left from the biopsy or something, you know, really small like that. But they said to me, “You know, Ms. Seboni, you have stage 3 malignant melanoma”. And with much confusion I asked: “What is that?” And the doctor responded and said: “It’s skin cancer.”
And in disbelief, much disbelief. I said to them, “But I’m black”, because it had never occurred to me that a black person could be diagnosed with skin cancer. I had this misconception about the disease that, you know, it was a white-person disease. And in that moment, I felt lost because, you know, a belief of mine had been shattered in that moment. And I begged the question: What else was I wrong about?
I see, yeah. So, did you experience any kind of stigmatization? I mean, you’re rather light-skinned for a black person, so to say, but was there any kind of stigmatization after the diagnosis or previous to the diagnosis when you were probably trying to take care of yourself anyway regarding sun exposure? And you just mentioned myths about sun exposure or even skin cancer, as you said, that you were quite surprised that you could even get it.
No, I definitely did experience stigmatization. I think for me, growing up in Soweto, you know, just being a light-skinned little girl. And it’s not that I was the only light-skinned girl on my street. There was another girl, and it’s not like my skin tone was an anomaly. No, we have all kinds of shades in South Africa, you know, beautiful light skin tones. And I found myself experiencing even from that age, even though I didn’t have the terminology for it, but colorism, you know, amongst my black friends. So, granted, I was lighter than the other girls, but it became something that, you know, I started to feel a little bit uncomfortable about it in my own skin because I had to use sunscreen at some point.
My parents always told me to, I guess, stop playing, you know, in direct sunlight. I had to play in the shade, or the kids would have to come play in my yard because we had trees in my yard. And, you know, it almost seemed like I was experiencing some sort of privilege, so to say, because they were not living their lives the way that I was. I was using sunscreen. Nobody was buying sunscreen at the time. I was swimming; none of my black friends was swimming at the time. You know, I was wearing hats constantly, even in school. As I got to high school, I’d carry sunscreen in my bag. I had, a multitude of hats with me, and, you know, I played a great deal of sports.
So, my friends used to kind of tease me and say that I wanted to be like a white girl, because I guess the actions that I was taking, we normally saw it with the white kids in school. So, I didn’t feel very comfortable in my own skin from a young age. And I think then it also correlates to why then my beliefs of skin cancer would be that this would be a white people disease. Because black people look at their skin and the melanin, you know, and think that this is like the superpower, you know, superpower thing that’s on their bodies and, you know, you wouldn’t get affected by the sun. But I really experienced quite severe sunburns and nosebleeds, just excessive irritation of my skin. So I obviously did not enjoy being teased and taunted about having to take care of my skin. But even from a young age, I knew that my skin was different to everybody else’s, especially in my community.
Okay, I see. So, after that biopsy and the diagnosis, which coping mechanisms did you develop? You mentioned mental health previously. You also mentioned that there were some learnings and insights, for example, that you were able to get skin cancer after that. How did you cope with that?
I’ll be honest with you, Alex. I didn’t cope. I didn’t. I wish I had been stronger after my diagnosis. I wish I had kept it together. I wish I had been more present, you know, because after my diagnosis, I went home to, sort of say, face the music. And I believe that right then I started to die on the inside because I didn’t have the will to live. And I had decided to not fight before I had even gone to my follow-up appointments. The thing about the diagnosis is that, you know, after doing the research and understanding that it was a deadly, like life-threatening diagnosis, it crushed me. It crushed my dreams. It crushed my hopes. And when you’re hopeless, you feel like there’s no point in living.
So I had, in that moment, succumbed to the notion that cancer was going to take my life prematurely. And one of the biggest mistakes I think I made was around time, because when my lecturer had seen my mole, you know, he showed a great deal of concern. And this was now a white man. And he told me: “Look, you need to get the thing checked out.” And I didn’t do anything about that. It took me over a year to eventually go and see, you know, a doctor.
And then even after my diagnosis, it took me six months to go and get the surgery to actually get the melanoma removed. And in all honesty, I was scared, you know. I had lost my father three years prior, and he was like my security blanket. And I no longer had that security. So, I felt like I couldn’t face the world, let alone a cancer diagnosis. So, my biggest takeaway is that if anybody suspects anything, if anybody sees anything, if anybody tells you, like, this could be a matter of concern, is to definitely act more swiftly.
Time is sometimes, I think, an illusion. And I think we believe we have time to do things and we have time to go to the doctor. And sometimes you need to act immediately, because if I had acted sooner, I wouldn’t have had such a late-stage diagnosis, I believe.
Understandably so. Yeah. I was just going to ask about any potential advice to others that you could give, but that’s basically that important piece of advice, I think, to get it checked out as soon as possible, right?
Definitely.
And in your opinion, how could more awareness of skin cancer be achieved? Not only in South Africa but also in the rest of the world, I think, how to make people more aware and how to take care of themselves and act swiftly?
Well, I’ll note that last year I did something that I always wanted to do, I guess, since my diagnosis. I took a leap of faith, and I did a ten-school skin cancer awareness tour in Soweto. And what I had found was that definitely there is a need for more awareness through education work that needs to be done. Because the number of learners who came to me afterwards to show me their suspicious moles, to tell me about the challenges they’ve been experiencing in the sun, you know, and obviously to also tell me that, look, sunscreen is expensive, you know, is there an alternative for them to use? You know, because, I mean, a bottle this size is, and a good bottle I mean, could be 300 Rand, you know.
So, somebody who’s living in a township, who is going to a free public school, you know, sunscreen is not going to be the first thing you look at. So, I had to really engage with those kids and say: “These are the alternatives. Instead of you maybe using the sunscreen, wear a wide-brimmed hat.” Right? And I literally had a number of hats with me. I had a cap, a baseball cap. I had a bucket hat. I had a wide-brimmed hat, and I had one of these, ah, what do they call this hat now? I can’t remember it, but it looks like one of these safari hats [laughs]. So I showed them, you know, these different hats and tried to explain to them, you know, the level of sun protection that they would get from each hat.
So, obviously, if you’re wearing now a baseball cap, it only covers your forehead. Then what happens to your ears, what happens to, you know, your neck and all those things. And so making them understand that they are alternatives to not having to utilize the sunscreen because it’s an expensive commodity to have, so I went through those little exercises with them. And having them understand that, you know, seeking the shade is one very important thing. I mean, it’s hot, this side [laughs]. It’s really, really hot, this side. I’ve been to Germany a few times and I never got to experience like summer, like we have this side. So, it’s having to make them understand that, you know, during particular hours of the day, your 10 a.m.’s, and for me it is not even 10 a.m. I say from 8 a.m., because the sun is already up and it’s already shining at that time.
But it’s just to understand, the, what do we call it, the UV exposure at that time of the day, what it looks like for them. So I really went into as much detail as I could with these kids, and I’m so grateful that I had the opportunity to do something like that. And for me, the push to do such a school tour is because I understood that, when I was going through those challenges with my skin, I was the same age as these kids. So, I understood that if I had had this knowledge prior, perhaps, perhaps, Alex, my life could have changed. Perhaps I wouldn’t have had such a late-stage diagnosis.
And if you incorporate, you know, new lifestyle habits into your life, I think you can definitely grow into that, into your adulthood and be able to share that even with your kids and with your family. So, we end up having now a generation of people who are more sun-smart and sun-aware. So, I definitely think that we need to be doing more education through awareness in the schools, in the school systems, to get these habits learned from a young age.
I completely agree with you, and I was just going to mention the “Be Sun Smart” campaign or the ABCDE infographics, which are really helpful. And that leads me to mentioning CANSA, the Cancer Association of South Africa, which you are affiliated with as a cancer survivor, and you are even an advocate for them. Did you go to the schools as an advocate, or was that prior to that?
I’ve been an advocate with CANSA since, I mean, I was diagnosed in 2015. So, literally since then, but in the capacity I went to the school, I went there as a multitude of people just in one. I was there was a cancer survivor. I was there as a CANSA advocate. I was there as a Miss Township South Africa second princess finalist person. I mean, I was there in a lot of capacities [laughs], but what I understood is that, you know, from my journey, right, like I said, being diagnosed in 2015, CANSA, the organization, and even through its people, became the catalyst, you know, that led me to “I need to take charge of my health and face my diagnosis.” Because I’ve spoken at several of the events and provided, you know, my support when lobbying for change, even with the current tobacco bill that we’re trying to pass to institute a 100% smoke-free indoor and outdoor places, right?
So, I haven’t stepped in only as just, you know, a melanoma survivor. But I’ve tried to lobby for other things as well under the CANSA umbrella. So, I’ve definitely had different experiences, different experiences with the Cancer Association of South Africa. And I continue to work with them. I continue to be an ambassador and advocate with them because there’s a lot of work that still needs to be done. The infographics that, you know, they share across social media, across their websites have become tools that I use, even when I’m doing the school tours.
So, I’m glad and really grateful that I had, you know, the know-how at the time of my diagnosis to get in contact with them. And thankfully, I’m still alive and I’ve, you know, been able to have this kind of relationship with them because I know that at any moment, if I’m going through something, whether it’s, you know, in emotional capacity or if I have to go to the hospital, that if I’m struggling, I can always call them and they can be able to assist me, whether through telecounseling or through having one of the advocacy managers get in contact with the hospitals to say: “Look, we have a patient who’s struggling with this. We need you to help.” So, they definitely help a lot of people in our country to really get the treatment that they so rightfully deserve. So, I’m glad I’m associated with them.
Sounds great. And as we’re approaching the end of the interview, here’s my last question for you. What are your plans, and probably also CANSA’s plans, for the upcoming Skin Cancer Awareness Month in May?
Boy, that’s a tough one! And I really want to go back and do the tour. I really, really want to go back and do the tour, but go to different schools. But because schools have just reopened and the schedules of the kids is a little bit tight, I’m thinking I’m going to push the tour to just before summer so that it’s fresh in their minds, you know, when we’re doing that skin cancer awareness.
So, for now, I’m definitely going to continue, doing the awareness that I’ve been doing. I’m definitely going to continue using the infographics from CANSA, and we’ll be doing a lot more interviews and sessions with other organizations, where I’m able to share my experience as a cancer survivor and, this particular way, a melanoma survivor. Because the thing about melanoma that a lot of people in South Africa, and especially people of color, don’t understand is that people of color get diagnosed at a late stage. And the thing about a late stage diagnosis is that you have a less than 20% five-year survival rate.
So, I need to continue to drive the message that, you know, prevention and screenings are going to be a lifeline for them. I definitely want to continue with those efforts, those “CANSA wins” efforts, and when CANSA calls I’m definitely there to answer. So, we’ll keep doing what we can do this side.
Excellent, Naniki, that’s great! Many thanks to you for telling your story, and many thanks for taking the time today, and I wish you all the best. Many thanks again.
Thank you kindly, Alex. Thank you so much to every single person that will be able to actually listen to this and, you know, understand a little bit of a melanoma survivor’s journey through my story. And I’m so grateful that I’ve really come to the other side of this journey. I mean, I’m eight years now cancer-free. And I want to continue to do this work because it’s really important. Skin cancer is on the rise in the whole world, and people need to know and be aware that prevention and screening will be a lifesaver for them. So, thank you so much for allowing me this opportunity to share my story and to my word of advice to everybody that will be listening. Thank you so much, Alex.
You’re welcome, Naniki. Many thanks.
Photo: Stan Santho Photography
For this episode of Karger’s The Waiting Room Podcast, we spoke with Emily Lewis about Rare Disease Day on February 29, and how artificial intelligence (AI) and digital technologies could help patients living with a rare disease.
Emily (Kunka) Lewis, MS, CCRP, CHES is an opinion leader in the digital transformation of healthcare. She is driven by a desire for the democratization of modern medicine. Emily received a Master of Science in Clinical Research from Northwestern University. She is currently working as a Digital Transformation Project Lead at UCB.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Emily, and welcome to The Waiting Room podcast.
Thanks for having me.
Now, first of all, please tell us a bit about your work and your connection with rare diseases.
Sure. So, it starts quite a while ago, and like most cases, it’s a pretty personal case, which I’m willing to share. I lost my uncle from ALS, Lou Gehrig’s disease, back in 2009. And from then I really decided to turn my professional life into kind of a dedication to his life, which meant that I started working at Northwestern Medicine in downtown Chicago in a multidisciplinary neuromuscular clinic. There I became really heavily involved in a lot of advocacy organizations like The Les Turner ALS Foundation.
I remember I worked in the lab as well as in the clinic, so I carried around a lot of donated brains and spinal cords in buckets to the lab and truly immersed myself in what a multidisciplinary care clinic is. And if you aren’t familiar with what it is, it’s essentially a clinic where patients are there most of the day in really complex disease states. And we bring in other specialties beyond clinical care like social work, dietetics, research, and then also vendors, like wheelchair vendors or respiratory clearance vest vendors. And we take a really patient-centric approach to just getting everything to them that they need within a full day so that they don’t have to keep going into large, dense areas like downtown Chicago. And we really respect the patient’s time. So, it’s a long day for them, but they get to see so many different people all in kind of a one-stop shop.
And then after working at Northwestern, unfortunately, my father was diagnosed with frontotemporal dementia, which is a related genetic rare neuromuscular and degenerative disease. And so I really got interested in genetic mutations and genetic mutations causing disease and the relatedness of genetic mutations across several disease states. And so from there, I also had a lot of professional experiences. I was already working in research and worked in Cushing syndrome, Tay-Sachs disease and Sandhoff disease. I worked in decentralized trials, which meant that we were bringing clinical trials to the patient’s home and those were ripe breeding, oh, not breeding grounds, but ripe environments for us to really test out these models of interesting research delivery within rare disease.
So, we got lots of really complex trials of small numbers of patients in which we were able to try going to be patients homes and doing these research procedures within that home environment. That meant doing physical exams on the patient’s bed and all sorts of things. But just being in this digital space was really kind of an important foray into rare disease because that’s where people were willing to really try things. This is about six years back.
And then most recently at UCB, my current employer, we are working within hidradenitis suppurativa, a rare condition within immunology for skin, and then also myasthenia gravis. It’s a condition within neurology that we, it’s actually called a snowflake disease that presents many different ways across patients. And so those are big focus areas for us. We’re really pivoting into rare disease as a company. And so as a part of, some of those rare disease efforts have been building software as a medical device for these disease states, for specifically myasthenia gravis. I’ve also worked with academia. We’re partnered with Stanford University and working with them to see how we can utilize generative AI to improve the clinical care delivery of rare patients. And with that partnership, I’ve also produced and co-chaired some rare disease symposia in which we brought in caregivers and thought leaders to talk about how the collective we can tackle some of these thorny challenges for rare disease patients.
Excellent. Now, to get into more detail, since you mentioned AI already, and that’s the topic of today’s session, is how can artificial intelligence or AI for short and digital technologies help improve the diagnosis of rare diseases?
Yeah. So, we’re in an interesting age, right, where we bring around digital devices with us wherever we are, whether it’s a smartphone or a smartwatch. There’s certainly this continuous high-volume data that we’re now generating just in our personal lives, right? And so this is now called digital exhaust. And so that’s kind of the term that’s been coined to really talk about this massive amount of data that every day we are generating in essentially everything we do, whether it be on computers or, like I said, in our personal lives, if we’re on social media or whatever. There’s just digital data being generated essentially in most of our daily lives. We’re lucky in that with rare diseases, although they’re complex and they are variable, as I mentioned with the myasthenia gravis, each myasthenia gravis patient essentially can present differently.
We can now use AI to integrate this clinical, biological, social data and really connect the dots for us to recognize patterns in large data sets and also combine diverse data sources. So, it could be the electronic health record, genetic testing, imaging, patient-reported outcomes. Lots of different data sources can really come together for the AI to then identify correlations in that data that are likely missed by clinicians. And then this is especially true in imaging, but it’s also possible in other data modalities. We also know that with natural language processing, which is a specific type of AI, we can also process and analyze unstructured clinical notes and medical literature to really extract relevant information that might be buried in that text. So again, it’s sort of, it can be a superhuman power almost, where it really augments the clinicians to really see things within information they may not have put to put together on the front end. It really happens on the back end.
The other thing that’s interesting about this era of AI is that it’s really optimized for human computer interfaces. The AI can then surface insights and suggestions in clinicians’ workflow, for example, at the right time. In terms of diagnostics, which was sort of the nature of the question, you know, clinicians can really see these insights in real time and use them as diagnostic tools, especially in differential diagnosis of a patient, to have these quicker, more accurate, either medical, the latest medical research or similar case histories pop up and really prompt them to think through in a really organized fashion how they might approach, like I said, kind of the differential diagnosis process. So, yeah, I really think of AI as a copilot. I think Microsoft has a pretty good naming of their better latest product because I really do think that we should be thinking of AI as a copilot in medicine and otherwise.
Okay. So, now that we’ve spoken about the diagnostic part, how about the management of rare diseases?
Yeah, yeah. I think there’s definitely a role for AI in kind of personalized health monitoring for patients. As I mentioned, we kind of worked on software as a medical device. I see a place for apps to really help patients track the progression of their disease by tracking their symptoms. So, they can, in their own time, record, whether it be a selfie of their face or them doing certain movements with video recording happening. And AI can be in the background really looking at how the disease is progressing, if it is progressing, and then really help the patient communicate with their doctor about this progression of symptoms to really talk to their physician or their clinician about how they can optimize treatment. It could be that they adjust medication based upon the progression of disease, and they can really track the effectiveness of that treatment when they have made the adjustments and then go back and see how their symptoms are getting better or worsening or what happens afterwards.
So, it really allows for better, more efficient communication between patients and health care teams to really fine-tune the treatment according to how symptoms are progressing. I would also say that algorithms can analyze symptom data for really looking at proactive management. Rather than reactive management, as I just mentioned, we should also be thinking about kind of identifying this worsening of symptoms earlier so that we can essentially try and prevent a worsening of disease. In the example of myasthenia gravis I gave earlier, what we’re trying to do is predict flares of disease or worsening of symptoms before they even start by looking at things like weakness or level of activity. So, we want to get to a place where we’re more proactive and use is data-driven, more responsive integration of people’s exams, labs, scans and daily symptoms to really think through how we can be more proactive about treatment, or even just rest. You know, it doesn’t even mean treatment. It can be an avoiding of behaviors or lifestyle changes.
Okay, that sounds like a great approach. Now, do you see any challenges and possibly barriers for patients with rare diseases when trying to use and access these digital solutions?
Yeah, absolutely. I mean, as with anything, there are challenges, but specifically within rare disease because of the fact that they simply get less attention and are less prevalent than more common diseases. There’s just less availability of solutions for rare disease patients. And a lot of digital health solutions are just not designed for rare disease. So, that’s one disadvantage. But also we know that a lot of tools, even when they are created and put on the market, aren’t necessarily clinically validated and reliable. Clinicians often look for this to make sure that they’re giving, recommending solid treatment options for their patients.
But, you know, health care providers are just hesitant to recommend these kinds of solutions. And insurers, at least in the US, are less likely to cover them if they don’t have the clinical studies and the clinical evidence behind them. So, availability, clinical validation and reliability. But also, you know, obviously cost is a factor. We know that digital literacy is sometimes a factor, especially in older populations. It’s getting better, but, you know, people may not be as familiar with digital solutions. And then also within rare disease, you know, with really complex patients, there may be actual physical or cognitive limitations with some patients.
I was wondering about one aspect, which would be the ethical part. For example, ethical considerations which need to be taken into account, like data privacy or something like that. Do you see any problems there?
I don’t see them as problems. I see them as watch-outs. Certainly one thing throughout any research and especially digital and AI is informed consent. Patients and caregivers should always be providing continuous informed consent for understanding how the data will be used, understanding who will have access to it, and what the purpose of the access is. If it’s for research or treatment optimization. You know, I think about how I share my location with my family through Google, and Google continuously sends me an email and says: ‘You’re still sharing your location with your family members. Is this okay?’ And I think of that as sort of what digital should be for or what this process should be like for all for patients and caregivers. It should be continuous, even if it’s just reminding that you are participating in a trial or that your data is being used. I think that’s an excellent way to keep this kind of thing front of mind. So, informed consent is huge.
I also think, as you mentioned, data privacy and security are important things to consider. This data is inherently sensitive and it can be stigmatizing. Breaches of this data can re-identify patients in some cases, and there are some serious discriminatory consequences if this data is leaked, such as in the US insurance eligibility. There’s things like employment prospects could be jeopardized or even educational or social interactions. So, we need to make sure that we’re keeping this data safe. And also bias and fairness. We know that rare disease patients are diverse in their disease severity and their presentation of symptoms. We know that we need to be gaining large amounts of this data to make sure it’s diverse enough to train the data appropriately so that we don’t inadvertently perpetuate biases and make sure that it’s as representative of the population as possible.
And then the last thing I would mention is really the idea of autonomy. We should still be thinking about how digital technology should really complement and not replace the patient-provider relationship. And so this is especially critical in rare disease patients where maybe there’s a caregiver involved who’s making decisions on behalf of the patient. But in either way, if it’s the patient making decisions for themselves or the caregiver making decisions, it should be a shared decision-making process with the clinician, and they should be actively involved in their care and treatment decisions. And so AI is certainly a way to augment both the patient and physician in being a part of the decision-making process and being apprised of everything happening along the way in their care delivery.
Absolutely, yeah. Now let’s have a look into the future and sort of look into the crystal ball. Which innovations are you expecting in the field of AI and digital health devices, which would help patients to possibly have a better quality of life?
Yeah, I sort of think about this in two ways. From a care perspective, I’m really hopeful for a truly personalized treatment plan. Ones that really consider a patient’s unique genetic makeup, you know, based upon markers and mutations in genetics as well as their phenotype. Considering their disease presentation. I really see a confluence of lots of different data sources that really bring both historical data together with this current patient data for this individual to really guide the selection of more effective treatment strategies and find treatments that have the least amount of side effects. So, really optimizing outcomes for patients based upon more informed treatment decisions.
And then in the research space, I really think about AI augmenting clinical trial matching. Finding patients for clinical trials that help us have better chances of finding effective therapies of disease. And then also in more of the rudimentary R&D process, drug repurposing. So, finding AI, using AI to identify new use cases of existing drugs, but then also discovering entirely new drugs so that we, we know there’s a lot of stimulation happening with AI. We know that people can use what’s called GPUs, graphical processing units, in the cloud, and they have unique instances of this that they can then test using generative AI, test virtual modifications of active molecules, using machine learning-based methods to really find, really narrow down the number of compounds that they are interested in and have this done all, you know, in the cloud with just virtual simulations of active molecules. We can actually find better targets and potentially new molecules that we never thought of using in generative AI.
You previously mentioned that we basically know that rare diseases are really diverse and there’s a lot of them, about 7,000. I was thinking that there’s a high degree of individual patient need because each and every case and each and every condition can differ vastly from any other patient. What is your take on this?
I think you’re absolutely right. And I was actually at the symposium that we put on in September. This came up as a big theme of the conference. And so there was one quote that I want to attribute to Onno Faber is his name, he’s a key opinion leader in this space, but it really stuck out with me. And it was something to the effect of, you know, thinking of many individual patients and the diseases within these individual patients as one big problem. Although there are many of them, if you really consolidate to think of rare disease as one big problem, then it’s in some ways easier to tackle. But I really believe that we should take a really global perspective on rare disease. I think that we are stronger in numbers and so international collaborations are really important. Number one, because you can pool resources, but also you can pool patient populations and expertise as well.
And luckily, we’re seeing a lot of movement within like the government and regulatory sectors as well. We’re seeing many governments provide incentives for developing orphan drugs for rare diseases by doing things like incentivizing market exclusivity, tax credits and assistance with clinical research. So, this makes going into rare disease research and development just more economically viable for those companies who are interested. And then we’re also seeing, interestingly, some alternative funding models. And those are things like venture philanthropy and public private partnerships. We’re seeing more capital go into this space in areas that might not have been traditionally profitable.
It’s interesting to see how this space is evolving. There are certainly changes happening with regulatory agencies. They’re becoming more flexible in how they want to interact with companies who are doing rare disease research, and they really are promoting novel methodologies for research and development of rare disease drugs, using things like adaptive clinical trials, as well as the consideration of real-world evidence, and then also being in favor of expedited review processes to get these therapies to market quicker.
Thank you. Now, more of a hypothetical question: If you had all the money and means in the world, which ideas and plans would you realize first regarding AI and digital health and rare diseases?
Yeah, I mean, when I think of this question, of course, selfishly, coming from the US, but my greatest wish, for this country at least, is for a universal payer system in the US, which has been the bane of our existence for a long time. If we can just have some seamless interoperability and data integration, I’d be very happy. But stepping out of that selfish perspective, I would certainly say a global framework for the ethical development and use of AI in health care. We’re seeing lots of regulations pop up kind of in pockets. You know, there are certainly some in Europe right now. And there’s more guidelines in the US and other parts of the world. So, a harmonization of those frameworks would be nice.
And also just addressing issues like data privacy and confidentiality, security bias. Those are all things that are very top of mind for me. And the idea of transparency is super tricky in the field of health care AI because a lot of times more transparency means less accuracy in models. And so how do you balance those things and really keep the manufacturers of these models accountable? And the US has some frameworks around this to make sure that patients are accountable, and we’re certainly starting to see the same in other places, too.
Equity is also on my mind as well. We need to make sure that we have a responsibility really to get AI to every corner of the earth because I really believe that it can democratize medicine, much like telemedicine did during COVID. We have the capability of really transforming sick care into true health care by reaching some low-income rural areas and underserved regions. So, in the end, we can do our best to conduct the best R&D, discover the best products, and build the best products. But unless we get those to the right people at the right time in a personalized way, as we saw with a lot of digital therapeutics, if that last-mile delivery isn’t there, you know, it’s all for naught if we’re not getting it to the right people.
Definitely, definitely. Thank you. Now, as we are approaching the end of the interview, here’s my last question to you: What are your own plans for this year’s Rare Disease Day, which is on February 29 this year as we’re having a leap year, as well as for rare disease month?
Yeah, I mean, I’m pretty active on social media, so that’s a lot of where I do my activism. But I believe we can all contribute to kind of bringing awareness to the special month in special ways. It could be in your own way. You could go into the community and get involved in a local chapter of an advocacy group or a non-profit. You could raise awareness on your social media, attend events like a charity run or auction, but I think it’s all of our responsibility to really figure out how to empathize with these patients. If we really understand them, we can truly be in solidarity with them and understand their needs to best meet them, right?
I think all of us should be really finding ways to connect with somebody who maybe has a rare disease that you know of or share their story and make sure that you’re really understanding where they’re coming from. I know there’s one really great podcast that I can recommend. It’s, well, there’s several, but there’s one, Once Upon a Genie, or Once Upon a Gene, that’s really good, that actually interviews rare disease patients and allows them to tell their story. So, that’s one great place that anyone can start.
Excellent. Thank you, Emily. Thanks a lot for your time and for your insights, and all the best. Thank you. Take care.
Thank you. Likewise.
For this episode of Karger’s The Waiting Room Podcast, we spoke with Bernie Price about her patient journey, her experiences after a gynecological cancer and hysterectomy, as well as the healthcare system as such.
Bernie Price is an endometrial cancer survivor. She is a Transformational Mindset and Life coach, Tai Chi instructor and athlete. Furthermore, she serves as an advocate for women going through menopause.
The booklet “Fast Facts for Patients: Sexual and Reproductive Health After Gynaecological Cancer” mentioned in the podcast episode can be downloaded online free of charge.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Bernie, and welcome to The Waiting Room podcast. Good to have you here.
Hello, Alex, and I’m delighted to be here. I’m a podcast fan. So, to actually do them, I mean, I haven’t done that many, but I love it. So, thank you for asking me.
My pleasure. Now, let’s jump right in and start with the first question, which would be: Please tell us a bit about yourself and your patient journey.
Well, I’ll talk, I’ll just tell you something about me. I’m a mind coach, and so I help people coach the mindset. I’ve got a daughter of 28. I only ever had one child. Always had really good health. I never had issues with health because exercise and food has always been important to me. And then during lockdown, I started to experience some bleeding. Now, I had gone through, I had gone through the menopause. So, in fact, I went through the menopause, Alex, the day I got divorced. It’s that interesting? It’s like: ‘Your job’s done now!’ And then, so, I was in a dance class and I noticed I was bleeding. And the year prior, I’d had some gastro surgery.
So, during lockdown I had a number of things, like a bolt out of the blue. And I contacted the doctor, and the doctor said: ‘Oh, it’s adhesions, you know, it’ll just be scar tissue.’ And doctors were really hard to get hold of at that time. And it was all by phone and it was mainly locums, but there was like, what I would call an Inner Ding inside me that said: ‘This doesn’t feel right.’ So, I got an appointment by phone with my own GP and she said to me: ‘Have you had any more symptoms?’ And I said: ‘No, just this bleeding. I’ve been advised it’s adhesions.’ And she said: ‘Look, I don’t want to alert you, but I’m going to just get you checked on. We, in the UK, we have a two-week Fast Track program. ‘I’m going to put you through that just to rule anything out.’
And I always remember her saying to me: ‘Don’t lose any sleep.’ So, I put it to the back of my mind. I’m a mind coach, I had something there ready to look at it. And then I went for a biopsy and I went for an ultrasound scan, and four days later I got a phone call because that was the way that they could deliver the news because it was impossible to get into hospital, that we found the very early grade A of endometrial cancer. Womb cancer. And it was interesting, Alex, because it didn’t have a reaction. I think the body’s designed to go almost into numbness. And: ‘But we’d like you to come in and meet with the surgeon who will do your surgery. And we’d like …’ So, that was in December. ‘And we’d like you to come in and have the operation on Valentine’s Day, February the fourteenth.’ The perfect timing!
So, I had my menopause the day I got divorced. And I had my hysterectomy on Valentine’s Day. That’s just really interesting. [laughs] So, I did all the pre-ops. I didn’t feel ill. There was no other symptoms. The only thing I did notice, actually, just thinking about it, was, I noticed that when you’re growing up, when you’re a young woman, you get sore breasts. That was the other symptom I noticed, that, and I thought now they’re going bigger. And I thought, well, I’ve never had big breasts, just positive, never linking the two. Anyway, it was an overdose, it was too much estrogen in my body, apparently so. So, on the fourteenth of February I went for the operation.
Operation went really well, except I had some scar tissue from having had some bowel surgery the year before. Because the year before I had to have a temporary stoma because I’d had an appendix burst. So, there was two operations within a year. So, all went fine, and it was really where, after, I was then discharged from hospital two days later, and that’s when I started to notice the issues that I was experiencing, particularly around emotion, mindset, etc. So, surgery was perfect. Went, you know, went like a breeze. It was when I got home, I started to feel not me.
Okay. Now that’s probably linked to that, I thought to which extent were sort of like that loss of identity, of feeling not very well and sexual wellbeing as well important to you after the operation? You just started to mention it.
Yeah, yes. So, the first question I had for them in the hospital was, would I be, cause, you know, I had been with my partner for three years and, you know, how will this affect me sexually? You know, will I carry on as normal? And they said: ‘Well, you have to let it heal, etc.’ That was the main advice I got in the hospital, and they were lovely. The nurses are just, you know, crazy busy, aren’t they? So: ‘Yeah, you’ll be fine. Just don’t do anything for eight weeks and life will be okay.’
And I noticed, probably two weeks after I came out, I felt, well, first of all, when you’ve had a hysterectomy, your tummy feels, it sounds as if it’s got, it’s a barrel, because there’s all this space. So, it’s all this space inside you and you don’t know what’s going where. So, that would have been helpful to know. Okay, so there was the sexual: ‘Will I be okay?’ ‘Yes, you will.’ Where do all my organs go? I didn’t even think to ask that question. And I’ve got some advice for people at the end of our session to talk about questions.
I then remember phoning up my GP and I got through to a nurse, and I think this is pretty commonplace now. And I said: ‘I don’t know who I am. I’m a confident woman, you know, I do coaching for my work. I help people get their mindset. I start, I cannot stop crying and I feel like, I felt like the barrel, felt like the empty vessel.’ And, you know, she was doing her best. She said, ‘Oh’, she said, ‘you’ve been through a lot. I think you would do well with going on antidepressants.’ And I went: ‘I’m not depressed. I’m not depressed.’ I went: ‘I know because I know enough about physiology, that my body’s hormones are all over the place probably.
So, even though I’d had the menopause, I still had ovaries, and they still would have been producing. And also your kidneys produce estrogen. So, when you had been stripped of estrogen, although maybe a little bit from the kidneys, and I said: ‘I don’t need antidepressants. I need my hormones sorting out.’ So what I did, Alex, was, persistence is my middle name. I believe there’s always a way. And I believe that if you, I always remember a dental hygienist saying to me once: ‘You have to be the itchiest itch and push for what you need.’ Right? So, I contacted the doctor and I said: ‘I don’t feel right. I don’t feel my hormones are right, and I know enough about my body.’
What I was surprised at was there was no aftercare, really. It was more the surgical procedure. Surgical, and I’m not criticizing, I think they’ve got resource issues. And when I’d had the stoma operation, which I’m glad to say is all reversed, I had a visit, I had a scar nurse come around. I had a lot of support. When I had the hysterectomy, it was going to be you’ll have a follow-up, You’ll have a follow-up at the hospital. What would have been great had been a phone call to say: ‘How were you feeling?’
And you didn’t get that?
Not how, you know, I didn’t get that. I didn’t get that. And the hospital, the hospital were great surgically. You can’t fault them, and the surgeon who did it was fantastic. But my persistent pushing got me referred to Paula Briggs at Liverpool Women’s Hospital, and she did, I can’t remember the timeframe, but she followed up fairly quickly with a telephone appointment. And what Paula was interested in was a) how the operation had gone, but more so how I felt.
And she did, she asked a lot of questions, and I said, you know, as I said to you, I said: ‘I don’t know who I am, I’ve lost my identity, my sleeping was up the wall.’ And she said: ‘You’re hormone-deficient.’ And what Paula then did is she took action. She said: ‘Right, we’re going to try you on a dose of estradiol and also testosterone’, which they’re now starting to use for women because we produce it. And I can honestly say, within the space of maybe a month, maybe less, because time gets blurred, doesn’t it, when you’ve been through it, I started to feel like me again. I started to feel like, you know, I was back to myself. I could, do you know how it felt before? I felt like an adolescent. You know, when an adolescent’s hormones are all over the place. That’s when I knew I wasn’t depressed.
So, Paula noticed that I’m quite persistent and asked if I would become a participant to help write a book for the NHS that would be distributed to ladies who were going to go through this, but also used in, I think, nurses training, nurses who look after. Because, somebody said I was quite vocal, but I was always constructively vocal, so I was invited. Would I, would I be a participant virtually to contribute what was lacking in my treatment, what was good and what was lacking. And we’ve now, or they produced a fantastic book which actually would help a woman know the emotional, know the emotional side of it, but also so that they’ve got…
Because I think knowledge and information and insight get you to know what the questions are you can ask. You know, should I be on hormone replacement therapy? Can I come and talk to somebody? So, I contributed to that book and it’s lovely. I’ve seen it. So, for me, I was always determined to make something that can be seen as an illness into a positive outcome for other women. Paula then asked me to do a podcast. So, this is the second podcast I’ve done. And then she said to me, she said: ‘You know, the nurses and all people who work at Liverpool Women’s, they’re going through menopause, a lot of them. Would you come and do a workshop with them? Because, you know, you’re a mind coach, you’ve been through it, you know, you’ve had that experience of what it feels like to feel empty and vacant.’
So, probably about October, can’t remember, I went to Liverpool’s Women Hospital, and we had about, I don’t know, 60 nurses who are not only treating women who are suffering, but they’re also suffering themselves. And the feedback was fantastic. It was, you know, ‘these are tools for life’. ‘I suddenly, I suddenly know how to ask the question.’ I know what I, because I think a woman has to do things herself, like exercise, like eat well, think about things like how do I get up in the morning and think about how I want my day to be. All the mindset stuff that I would do. It’s not going to solve the hormone issue, but it is a piece of the pie.
So, then Paula said: ‘Should we do something like this again long-term?’, so that’s, I’m hoping to work with Liverpool Women’s Hospital, we haven’t figured it out yet, to understand how we can help women, first of all, become empowered, understand what are the questions they could ask, but also what they can do for themselves as well. Because there was a, I didn’t want to exercise, and I’m a big exerciser, so I got a rebounder because it’s gentle on the body and I started rebounding. And I did stretching. I went back to the gym. I eventually went back to dance classes. I teach tai chi, so that’s really good for balance in the body. So, there’s a lot that women can do that might not know how to do or where to go to do it or might not feel like doing it. So, the whole experience, whilst I didn’t get the support and I would have ideally needed, pushed me to be an advocate for women who were going through this cause they suffer. They can suffer a lot.
Excellent. Many thanks for that overview, and that’s really inspiring. And you answered my next questions too in one go.
Sorry. [laughs]
Don’t worry about it. One particular aspect I like to focus on is quality of life and especially mental health. Now, you already mentioned that you did, that you concentrated on physical activity and that it’s very important. Did you have any other strategies or hobbies that kept you, like, going or helped get on your feet again?
Yes, I had a coach. So, I got a coach, and I worked with a coach. And this is why I’m passionate about it, because not everybody can afford coaching. So, I think there needs to be a way that we can help women. But I had a coach. She specializes in helping women navigate the transition in their lives because actually, if you look at this, once you’ve got everything balanced physically and, physically as in hormones, exercise as in health, you know, that’s really important because we know that it produces dopamine, it produces endorphins, all the good neurotransmitters that make you. So, when you’ve been through an experience like an operation, all your brain neurotransmitters are depleted.
So, I did things like I took amino acids, I worked with a coach. I kept very close to my women tribe. So, I always think the wisdom of women is really helpful, particularly those who’ve been through it. So, you know, my yoga teacher, who’s 81, fantastic woman; I took advice from her. I made sure that I went to classes, and I know on the NHS you can access classes. Not just classes for physical health but also for mental health as well. I picked the phone up and I made sure, they say that you become like the top five people you surround yourself with.
So, I made sure that the people I was talking to in my friends and family group brought positive energy. So that was really important. To exercise, big part. Food was a really big part. I went on high-protein; amino acids was a big part because that rebalances the brain, which will be depleted. But I made sure that I kept in touch with my tribe and I went, and I made sure I went out and had coffees with them, you know, because I have a very busy job. So, it’s important to be with uplifting people. And sometimes when I’m coaching people and I say, you become like the top five people you spend time with, your client, whether it’s male, female, will go: ‘Well, I haven’t got a chance, because mine are miserable at home!’.
But in your tribe or in your group of people, there will be people who you can talk to. You can pick the phone up. So, one thing that I think is useful for women to know: Every business has a board of directors to make them successful. I believe every human being should have a board of directors. And on that board of directors, I’ve got a friend, for example, that if ever my mindset needs a pattern interrupt, I phone her up. If ever I need some insight or a question I can’t figure out, I phone another friend up. If I feel like I need a laugh, I’ll phone my brother up. My daughter is on my board. So, it’s important to think about who have you got that surrounds you? Cause you wouldn’t use the same person for everything. Does that make sense, Alex?
That makes absolutely sense. It’s a bit like Who Wants to Be a Millionaire? And you need that perfect question for that perfect person, for that particular question, which only that person is going to be able to answer and to help you with.
And, you know, a couple of other things as well. We always, well, we often expect our partner to be all those members of the board. Yeah. And they cannot be, and then we think they’re unreasonable. But one of the things I think is interesting to share, I was asked by Nuffield Hospital to go and talk as a keynote speaker to about 180 radiographers, nurses, doctors, etc.
Now, my background is: I was a top bodybuilding champion, so I said, they wanted me to talk about champion mindset and when I went I thought, ‘Okay, well I can talk about winning and I can talk about that. But actually the biggest win I’ve ever had is traversing through these illnesses that suddenly came along like the universe hit you across the back of the knees with a cricket bat.’ So, I started talking to the chief sister or the matron, and she went, ‘Oh, are you going to talk about winning the Uverse?’ And I said, ‘Well’, I said, ‘I’m not sure actually, because I have gone through a series of illnesses. You know, one was having a stoma, I also broke my wrist, and then hysterectomy with cancer.’ And she said: ‘That’s your winning story!’.
So, I hadn’t prepared it. I just spoke to 180 people. And what was really interesting, the men came up to me and said: ‘You know, that’s really helpful to know what you’ve been through because we could do with help to help us understand our wives, our partners who are going through this, because we don’t know what we would …’ I mean, they’re very logical, men, ‘Oh, it’ll pass’, etc. But, and they said: ‘If we had more information or more help, that would help us to support them, that when they’re sitting in the chair crying, ‘I don’t know who I am’, and they say, ‘Of course you know who you are! You’re my wife!’, that they will be able to help them and just listen to them.
So, that was really powerful as well. So, I think there’s something about how do we help the men in our world understand the same way we need to understand about prostrate cancer with men. Because, with prostate cancer, they have all of their testosterone taken out. That’s what a friend’s going through at the moment, and he’s going through a really difficult time. So, that was interesting. Can we do more to help men or provide them with resources? And a couple of other things that I think are important. There’s lots of booklets that the NHS have around endometrial cancer, ovarian cancer, breast cancer.
And when you’ve left your appointment, they gave you the booklets. I think we need more than that. I think somebody needs to talk you through, and I know they don’t have a lot of time, because some people will take those booklets and they’ll put them on the side table because they’re not in the place to read yet. Some people will, some people won’t. I think this booklet that I’ve been part of contributing to is a very different kind. It’s about the, there should be some introduction. Here are some booklets to really understand surgically, but also emotionally. So, I know I’ve got a resource there.
And then the other thing I want to suggest for anybody that’s going to go through this or is going through it, when I was in hospital just recovering from the operation the first day, there was a lovely, lovely lady, very unassertive, who, they had misplaced her handbag, and in her handbag was her phone. And I said to her: ‘Ask the nurses to go and find it.’ And she said: ‘Oh, I couldn’t possibly, they’re too busy.’ And what I noticed a pattern of is women will not often ask questions because they think the nurse is too busy. So they will suffer there with anxiety.
I, you know, I asked questions and I prepared questions, particularly around the surgical side of it. And my surgeon, who was wonderful, Sally Pennington, said: ‘Gosh, you’ve really done your homework. Before you go into any operation: What’s going to happen to me? How will I feel? What support is available?’ Because the surgical side tends not to deal with the hormonal side, which is Paula Briggs was so powerful for me. She’s, that lady’s helped transform my life back to who I was. But, ladies, if you’re listening to this: Ask the questions, anything you do need to know, because they won’t be able to mind read what’s in your head that you need to know. That’s one of the most powerful things I think that will give them confidence if they’re going through this.
Wow! Now we’ve almost reached the end of the interview. And my last question for you is: What does your life look like, the life of Bernie Price, look like nowadays? How has it changed?
It’s changed, well, I still do all the exercise. I still do all the food. I still have a very uplifted mindset. I think it’s changed in the respect that I’ve been through a journey. And I think that because I, well, now I know that because I’ve been through the journey, it’s given me volition to help other women. And, and also it’s really brought a sense of real gratitude for health and also that this can be, this menopause doesn’t mean the end of a woman. It’s the start of your radiant self because you haven’t got all that stuff going on.
So, my life’s great. I’m coaching quite a lot of more women now, but I’ve got so much gratitude and I feel a real pull, which is why I talk, Paula and I talk together about could we do something more where I can use my gift as a coach? So, it’s brought a gift into me, which is to turn something that was, could have been miserable and I could have chosen to hang onto that mindset into: I’m free now! I could do what I want, and that’s what it’s done. It’s just, it’s just upped me into a space of gratitude and more resourcefulness actually.
And I really like that positive attitude and outlook on things. And I think that’s probably a major factor in handling such a diagnosis and the situation and coping with it.
It is, because I think just finally people hear cancer and here are the things that humans do: They catastrophize, they delete what they’ve just heard and they mind read. And everybody’s brain does it. So, you hear it, you hear that, you’ve got cancer. I didn’t do this because I know that that’s what humans do, and I have got the resources because that’s what I’m trying to do. But some women will just catastrophize and it’ll put them in some misery, which is why I’m so, so driven to find a way to help them to do their part of keeping your mind calm, knowing that there’s a greater success at the outcome, all those strategies, and keeping a sense of gratitude. And finding the top five people to surround yourself with because you become like them.
So, in short, the answer to your question is, I think I’m more than who I was before. I don’t mean that big-headed. I think I have more appreciation, more gratitude, more importance of mindset, looking after yourself physically, and this desire to help women not suffer.
Excellent. Many thanks. I think that’s a great way to end this interview. Thanks a lot for your time and your thoughts and your advice. It’s very much appreciated.
I have absolutely loved it. And if only one person gets something from this, then we’ve changed a life.
For this episode of Karger’s The Waiting Room Podcast, we spoke with Charlie Bethel about men’s mental health in the context of Movember. The awareness month focuses, among prostate cancer and testicular cancer, on mental health and suicide prevention.
Charlie is the Chief Officer of the UK Men’s Sheds Association (UKMSA) whose mission is “Healthy and Happy Men”. He has studied Industrial Design at university and worked in the third sector for over 20 years before joining UKMSA in the summer of 2018. Focused on acquiring and developing resources for the organization, his tasks combine three of his passions: organizational growth, increasing wellbeing and his love of craft and design.
This podcast mentions suicide and suicidal ideation, and some people might find it disturbing. If you feel you need support, please contact your local crisis center.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Charlie, and welcome to the Waiting Room podcast. Good to have you here.
Thank you, Alexander.
Now, first of all, please tell us a bit about what Men’s Sheds actually are, how they came about and how they help in building connections and relationships, not only in the UK but also in the US, Canada and Australia and probably elsewhere.
Yeah, sure. So, if we talk about how they came about, so initially it’s an Australian concept, or the modern day shed is an Australian concept, and it was set up to help people somewhere to go. There was a lot of issues around men being on their own in farms and buildings in the outback in Australia, and they were looking at a health intervention of how they could bring people together and to reduce alcoholism, mental health, suicide. And so the modern Men’s Shed was born, and then it spread really over anglicized countries. New Zealand, Canada, then US, Ireland, the Republic of Ireland has many, many sheds, and they all look very different. But then we also have sheds in some of the Baltic states, in Denmark.
But it’s not really a new concept. It’s something that’s been around for hundreds of years probably. They used to be the working men’s clubs in the UK where men would go and afterwards, after work, and go and have a drink. Billy Connolly, or Sir Billy Connolly, the famous comedian from Scotland, talks about, in one of his shows and one of his books, about when he was a young lad, with all the dockers and he was working on the docks in Glasgow that there used to be the green fields, the green parks around the housing estates that used to be full of sheds with old men going there just to talk, just to talk to each other. But as society has changed and communities have changed and moved, as they do, now we’re a lot more transient in where we go and live, those things have been lost.
And so by putting a workshop in place where men can go and make stuff or do stuff or fix things, it has created those communities again. And those communities have developed in very different ways. So in Ireland, they very much work around health and get some funding from health, from their government. In Australia, they get considerable funding around what they do from their governments, which is amazing. In the UK, they are more around workshops. They’re places to go and do stuff, as I say, and there are many benefits that come from that. Benefits to the community, where they repair things for the community. They help schools. There was a shed recently made 17 xylophones for school. The poor children then had to listen to the shedders play the xylophones when they handed them over to them … Other sheds have created Santa Claus sleighs to go around their towns at Christmas time, or model trains. They do all sorts of things.
And the way it works is that if you use an analogy, which is: If you put twelve men in a room, square room or rectangular room, and ask them to talk about their feelings, six will leave and the other six will try to find the corners of the room. If, however, you put a lawnmower in the middle of the room and say “Fix it”, after two hours, those men will know each other intimately. They’ll know what ails them, what their names are, what their children and grandchildren’s names are. You might even get a fixed lawnmower. You’ll definitely get nuts and bolts left over, and it is that working together, shoulder to shoulder. that allows men particularly, but women as well, there are many women in sheds, but it allows them to talk and express themselves and to talk about things that are worrying them.
And it’s that very simple concept of working shoulder to shoulder. And some journalists have said, you know: “It’s therapy that dare not speak its name. And adding years to life and life to years.” And it is that that men won’t necessarily share how they feel, and women as well, but men particularly. We, whether it’s society or we put it upon ourselves because of society, but we don’t like to talk about how we’re feeling or a weakness or perceived weakness within ourselves.
So, there’s that element, but there’s also that element of creating, and I’ll give you an example of myself. So when I left my previous job, we were going to build a house, my wife and I, and had a number of family things that happened. My father-in-law had just passed away. We’ve just had our third child. And so we said, “Okay, I’ll take a career break, work with the architects on what we want”. And then, but I was still involved on an international board for sport. So I thought: “Well, that will fill my time as well.” But after a couple of months, my wife said: ”You know, you’re getting really irritable, you’re getting quite cross, you’re getting.” And I thought about it and thought: “I’m probably anxious because I’m not doing something all the time.” And whilst the house was busy, it wasn’t like a full-time job.
So, I had to put aside a couple of days a week where I was going to do something creating something that, and it was working with the governing body that I’m involved with. And that creation is a need as well, you know, something to manage, whether it’s anxiety or depression or being on your own. And I wouldn’t say I was an anxious individual, but I noticed it, and I noticed it because I worked in sports, and we had wellbeing programs and we’d had some stuff with some challenges in the past. Lots of men wouldn’t notice that, wouldn’t recognize it. And again, language is very different.
When somebody comes to a shed, they’ll say, “I was at a loose end” or “I was a bit fed up” or “I am pissed off” or, you know, apologies for the language, but it’s how men express themselves. Whereas actually, they’re probably depressed or anxious or, you know, the dark cloud is coming over them. And it’s hard to recognize if there is something there, even to yourself, let alone sharing that.
And so the Men’s Shed provides a safe space for men to talk where they’re not going to be peacocks, you know. Sheds of all autonomous in the UK. They can do and shape themselves as they will, and they do that, and it works really well. It’s a real strength. But those that have women will generally have a men-only session as well for those men that aren’t comfortable to be working alongside women. Not because they’re misogynists, but because they want that space to be able to open up with other people, and they feel safer in that environment.
So, that’s how the shed works. It’s very simple, very long-winded answer, but a very simple concept of sitting down and making something, but by chatting. And in the UK, we have the Women’s Institute, the WRI, and they’re famous for jamming Jerusalem, the song Jerusalem and making jam. Men’s Sheds are about bird boxes and drinking tea, copious amounts of tea. And we did a survey a couple of years ago which showed over a million cups of tea were drunk a year across sheds, but probably two million toilet visits as well, partly because of the demographic of a lot of shedders, obviously. [chuckles]
Obviously. Thanks very much for that overview. I think the concept is really fascinating, and you addressed a couple of points I was going to address too, because I get the feeling too that maybe some men are not aware that there’s a problem or that they don’t feel comfy about addressing it or feeling maybe even embarrassed to address it. Either in front of other men or maybe in front of their wives or whoever. And plus, you’ve got these phrases like you have to “man up” or you have to “chin up” and you have to “pull your socks up” and just stick with it and then it will be okay.
Yeah. And big boys, yeah, big boys don’t cry, you know? Absolutely.
Exactly.
And I think that’s a societal thing and it’s, you know, there’s no, you know, we’re not doing something that’s misogynistic. We’re not doing something that is enhancing the patriarchy that clearly has been across the world where, you know, men have been leaders, generally, across the world in terms of history. You know, we’re feminists in many ways; we want to try and get that equality where it’s needed for health for men. You know, we celebrate women’s rights and where that needs to happen. But the problem is there’s all these talks about masculine, you know, male toxicity, which doesn’t really exist. It’s, in my view, it’s individuals. Individuals are toxic. Well, it doesn’t, it’s not: All men are toxic.
But what that does do is, it puts an extra additional pressure on people. You know, and I’m very conscious, I’ve got a young son, very conscious, that I don’t say: “Big boys don’t cry”. But you’ll hear it in the street because it’s part of society. And if we don’t allow people to express their feelings, then they’re, not as a child, then they’re not going to do it when they’re older. And the result of that can be very poor mental health, and ultimately it can lead to suicide. So those, that environment that we find ourselves in, which can be done, is done generally by ourselves as men, you know, we need to break the chain. We need to break the chain and keep breaking that chain.
It’s not a weakness to talk about your feelings, but as I say, the language changes. And I was talking to a guy in a shed in London because we had one of our sponsors coming in. I was talking to him before the sponsor came and he talked about how he had retired and he enjoyed the holiday of retirement for the first couple of months. And then he started to get depressed and down and didn’t know what to do with himself. Then he came to the shed, got more involved in the shed, and now he is volunteering in several different groups. As soon as the sponsor came in and started talking to him, and she was a young woman, he was, his language just changed like a switch. And he was like: “Oh yeah, and I was at loose ends and I decided to come down to the shed. I enjoy making things for other people. And yeah, now I do lots of other stuff, you know. I don’t really need the shed, but, you know, I help others here.”
And that’s something that, definitely before the pandemic, we used to hear, which was: “I am here to help John”, and John was there to help Fred, and Fred was there to help Simon. And it was quite cyclic. One of the things that has changed after the pandemic and during is that a lot more people were quite happy, are more happy to say, “Yeah, it really helps me”. And we’ve seen that in terms of the number of stories that we get from sheds, verbalizing or documenting the impact it’s had, whereas pre-lockdown, we didn’t get those things as much. We got some, but we didn’t get it as much.
And there’s also this talk that, you know, the younger generation talk a lot more now so it’s not really an issue. It’s more with the older generation. But if that was true, suicide rates amongst young men wouldn’t be going up, which they are. So, whilst there is a group, they’re still talking, you know, and talking about their feelings. Maybe that group was always there. We just know about that more. But there is still a serious issue with male suicide, with every three out of four suicides being men, and in the UK it’s the biggest single killer of men under the age of 50. You know, more than road traffic accidents or cancer, you know, a single cancer, which is tragic.
And that’s what we’re ultimately talking about when we look at wellbeing. But it’s also about that quality of life and if people can use some sort of activity. It doesn’t have to be woodwork or metal work or 3D printing; it can be something else. People that just go along or using sports. But what you need to do if you’re creating those coping mechanisms is have a backup.
So, a lady came to us some years ago, we created a campaign for wellbeing in craft and DIY, and her husband suffered with depression. And he played football and golfed to manage that. He broke his leg. He didn’t have a backup. And when the doctor said, “It’s going to be another 12 months before you can play football again”, he tragically ended his life that same day. And that prompted us to create a resource and a campaign to try and engage the third, the craft industry particularly, about how do you promote positive wellbeing in your stores and your shops and your companies because, you know, a rope company isn’t going to put a warning around hanging on their products. But if you have positive messaging around wellbeing and craft, and not necessarily a Samaritans badge or a suicide prevention batch, but something positive, then you can start to create an environment where maybe somebody will think twice. And, you know, since lockdown, we’ve got a number of stores and now it’s gone quite dark on suicide all of a sudden.
But, you know, there was one guy who was walking down to the beach, and this was in the press a couple of months ago, walking down to the beach to end his life. And he bumped into a guy who started talking to him, sort of talking about the Men’s Shed. The guy turned around, walked back, went to the shed for the first time, and he hasn’t left the shed since. Well, he’s gone home, obviously [laughs]. But, you know, he openly says the shed has saved his life. And, you know, it was a chance meeting of somebody who was so excited about their shed, they’re just talking to strangers about it. Didn’t know the guy was troubled, didn’t know the guy was going to do what he was going to do. And, you know, you can give people that confidence.
But yeah, we don’t, men generally don’t talk about their feelings in the same way that they may come out with women. And part of that is opportunity as well, because we’re not necessarily in those environments in the same way that our wives may be or our partners might be, you know, and we see that, I see that. I moved to the village where my wife was from because she was wanting to look after her mother, who wasn’t very well at the time. So, it’s, you know, the man thing to do as well. And it’s, women do these things as well. It’s not, I’m not saying that we’re unique, but we are probably more unique in terms of not wanting to talk about things.
Definitely. And I thought men are probably more focused on solutions or getting things done while women, generally speaking, it doesn’t apply to all, each and everybody, are probably more comfortable with talking about their feelings and emotions and addressing them. And yeah, while men are bottling up things, but it’s great to hear that the concept works in order to change this setup and in order to get men to talk with each other, and whether the lawnmower is fixed after that or not, it doesn’t really play a role. It’s just how to get to that goal. That’s great.
Yeah [laughs]. You know, we’re grumpy sods. I think of myself as I probably turned grumpy at about the age of 23, and, you know, they’re all stereotypes, but that’s what you have to work off. You follow themes. And the shed works, and the autonomy is really important because it’s not telling a group of men how to do things or what to do, but it’s giving them examples of what’s working somewhere and not somewhere else. And, you know, the whole movement grows as a result of that. And there’s over 1,100 sheds in the UK now because of that shared learning and shared practice. And the impact isn’t just on the individuals in the sheds; it’s on their wives, it’s on their families, their children. And then there’s the practical things that they create and that has an impact on whether it’s the schools or others.
Another good example, there’s a lot of research that suggests that men don’t visit the doctors as much as women, and also they don’t visit the chemist as much as women as well. Even when you take out the pieces around bearing children and having babies. The stats are still a bit against men not doing it. But there was a shedder who was losing his eyesight, and he’d virtually lost it in one eye and his other eye started to go, and his friends in the shed sorted him out. And this has been going on for years and years, you know, the one eye completely deteriorated. And so his friends in the shed found out about what he might have, looked it up online, marched him down to the doctor’s surgery. He’s now got perfect vision in both eyes, but he didn’t want to bother anyone. He thought he was just getting old. He thought it was just one of those things. And, you know, luckily, some of his friends weren’t so accepting of the situation.
So, it’s not about the well, the mental piece. It’s around the physical as well, and we do a lot of talks and sheds engage in health because of talks we will give and share with them around prostate cancer or around sight, other physical things, including dementia. You know, and it might be that, you know, hip operations and things like that, we’re looking to do well around hip operations because people fear them. You know, it’s: “Oh, I don’t really want to do that. I’ll put it off another year. I’ll put it off another year.” Whereas, you know, the age of 40, I had my first and my second one was a couple of years later. And actually the second one went a lot easier because I’d gone through it the first time.
And it’s giving, it’s just sharing those stories so that people have the confidence to go and get it done. And a new lease of life. If you fix your hip, all of a sudden you can walk again. Yeah. You know, so it’s a really good conduit for getting messaging around health out again to the sheds. And it might not be the prostate cancer message, to the 80-year-old, that it’s helpful to them. But if they pass that on to their children or their grandchildren, around new techniques, that can make all the difference.
Absolutely. Now, we were talking about the community aspect and helping each other. But maybe you’ve got some advice. How can each and everyone out there, and no matter whether they’re old or young, the 80-year-old or the 20-year-old, do for their mental health?
I think it’s about finding something that can distract you. So, it could be it could be walking, it could be bird spotting, it could be something that takes you away from the day-to-day life. There was a guy called Bill who said that he loved the shed because he could forget about being lonely. And the shed gave him that opportunity. He’d lost his wife a few years beforehand. He’d been married for 60 years, 60-odd years, and it gave him that space.
And so if you can find that, and it might be in turning a wooden ball, doing some lathe work. You can do that on your own or you can do it in a community group. It could be playing walking football or tag rugby. It could be volunteering and helping out a community group somewhere in your communities. It can be something that you can do that will help somebody else. And that in itself will increase your self-esteem and it will increase your worth, your self-worth, your self-belief in something. Craft is good, woodwork is good, because you might be sat next to Picasso at an art class and it might be, well, your work probably would be better than Picasso. Depends on the task. But, you know, you may be disheartened if you don’t see an initial progress of what you’re doing.
Creating a bird box is a relatively simple project to do. Putting that bird box up and watching birds in your garden or in a park, you know, can be a real boost to your self-esteem. So, helping others is one of those pieces of the jigsaw that the shed does. But I think that there are other opportunities out there to go and do the same. Volunteering at sports events gives you the opportunity, maybe, to meet new people and talk to them. Or they talk to you, and then you open up.
There’s, you know, there’s a brilliant video that Norwich City Football Club did for World, I think it was for World Suicide Day this year. And it was about two guys just grunting at each other, really, at the football game. And the guy you thought was miserable was the one who was still there at the end, and the guy had sadly taken his life in this film. But you don’t always see, you know, the person that might be on the edge, the person that might be, you know, close to something more tragic. So, you know, just talking to people, saying hello in the morning to your neighbors, you know.
The stats around loneliness is horrific, with people that may go a month, you know, older people may go a month without talking to somebody, including their neighbors They, not everybody has family. And as the economic environment, you know, has become worse, people might not want to make telephone calls because they’re more concerned. People won’t go down to the café to have a cup of tea because they’re concerned about, you know, being able to heat the house or so. You know, just chatting to people and saying hello in the morning. It might be alien, but the more we do something, the more comfortable we become with it.
But, for certain, the shed creates a distraction. And so, you know, trying to find your own distraction and something that you enjoy. You don’t need to be an ultra-marathon runner, you know. If you want to just go for a walk, that can be enough for you. You know, if you can’t walk, what else is there you could do, you know? Go down to the library and read a book in the library. Don’t take it home. If you’ve still got libraries [chuckles]; it’s just an economic hardship here. But yeah, so you know, this, I think that would be the advice from what I’ve seen. And I’m not a medical practitioner or an expert in mental health, but what I see and what stays with me is the guy who said: “You know, I go to the shed and I can forget about being lonely. And it’s a new, you know, a new lease of life for me.”
So in a way, a distraction and also a sense of purpose. Of doing something valuable.
Yeah. And I think, you know, people talk about Maslow’s hierarchy and the need for food and water and shelter and so on. That sense of purpose, that creativity, whether it’s that God gene or what, whatever it is, that need to create or to help somebody else, I think, is incredibly powerful, incredibly important.
I agree. Now that the winter is approaching or the autumn has already started, at least over here, big time: What’s different during this dark season? Do you perceive a different approach? Is it more important to look after oneself as well as for others and to have an open eye and see what’s happening during these darker months?
I think so, and for a number of reasons. But I think the darker months, you know, can be depressing. There can be less opportunity to go out. You wake up in the morning, it’s dark, you go to bed, it’s dark. You know, we’re not in the Scandinavian countries where it’s dark a lot more, but yeah, the opportunity to get out and see people, to go for that walk when it’s cold or it’s raining. The opportunity to get out of the house is less. So, the need for a purpose increases to go and do those things.
And the other piece is that it’s like Valentine’s Day without having somebody to share it with. You know, everybody’s hustling and bustling around Christmas or with celebrations. And if you’re not with other people to share those experiences, they can also compound that loneliness or certainly that social isolation. And so, again, it’s important to try and find something for yourself to be able to focus on. And whether that’s focusing on The King’s Speech for the first time, second time here in the UK or something. What is it you’re going to look for, setting a goal or an achievement? And it might be as simple as, you know, walking to the end of the road and back, you know, ten times a week or something else. Or it might be actually: “I’m going to write my Christmas cards early” or “I’m going to create something for the new year”, or “I’m going to plan out my garden, and I might not be able to get into the garden, but I’m going to plan out what I’m going to plant”, or something like that.
Create yourself these goals. If you can’t physically go and do things. But also there are community groups out there, and there are community groups as well that are doing warm spaces. So, Men’s Sheds are warm spaces. A lot of them will be ramping up their heating because they realize that some of their shedders can’t put the heating on at home. And so, again, you know, poverty compounds more poverty. You know, poverty begets poverty. Social isolation begets social isolation, which is easier said than done. But so, you know, we need to try and break those chains, break those cycles and do something different and find that purpose, find that one thing you can do. Sharing a cup of tea. That’s one of the charities that we see out here in the UK. You know, maybe that’s what you’re going to do.
Absolutely. Now, last but not least, as we are approaching the end of the interview: Do you have any plans for this year’s Movember, or does it actually play any kind of role because each and every day is about men’s health anyway for the Men’s Sheds?
No, absolutely. Movember provides a focus. So, the 19th of November is International Men’s Day, and it provides us a focus, a platform to talk about men’s issues, men’s health particularly. And so, yes, we use that. We’ve recently created three videos with sheds around loneliness, around dementia, around suicide. So they’re being launched through this period. And yes, we put out a lot more positive, well, we put out positive messaging all the time, a lot more focus from our team on getting messaging out during November, but also trying to keep that going.
We were looking to do an event this year, but we didn’t get to do it, but we will look to do that in March. What we’re also careful of doing, and we do try to put messaging out across the year, is that we’ll put different messaging out this time rather than prostate cancer. So, you know, focus on prostate cancer maybe in December or February so that we’re keeping that message around prostate cancer to our members and to men in general, the wider community out there.
We have an awful lot of corporate engagement during this time as well. So, we have a talk, we’ve got several talks this month where we’re going and talking about how Men’s Sheds can be used as a vehicle to talk to your staff and your employees about mental health and at those points of wellbeing, positive wellbeing and at those points of retirement from a company or, you know, there’s life changing moments that can have a real negative impact such as divorce, redundancy, retirements, you know, the bereavement of somebody. And we try, we’re looking at how we create resources, but we do talk to companies about this and try and use the Men’s Shed as a vehicle that might be a cushion for people at that time, you know, and then they may go back into employment or they may do it while they’re working.
But it’s a different vehicle. It’s a non-invasive approach to supporting somebody’s wellbeing. You know, talking therapies are all, you know, very good and they work for certain people, but they don’t work for everyone. And one of our partnerships is with Cruse Bereavement, which is a men’s charity that does 40,000 sessions a year talking to men bereaved. And they work and partner with us because they recognize that conversation doesn’t work for everyone. And actually that physical distraction that detracts from their woes works as well.
So, they’re the things that we’re promoting during Movember. But you’re right; we try to do it throughout the year, and there’s those key points in the calendar. But you know, every day should be a shed year because it’s a simple wooden box. In some cases at the bottom of a garden where somebody opens the door and lets other people in. But in others, they’re in the community, on allotments, they’re in retail units, industrial units, community centers. And we want every day to be an opportunity for somebody to go to that shed. And whether it’s just to pop in and have a cup of tea and carry on with their shopping, or whether it’s to go and make something so that they feel that they’re contributing, you know. And some of the things they create are beautiful pieces of art and beautiful designs. Other things would maim a bird that landed on them. But when you see that sense of achievement in somebody’s eyes, it’s absolutely tremendous.
Well, that’s excellent. Many thanks. I’ve learned a lot. I found that really interesting, and I like the concept. I think it would have done a world of good for my own dad when he retired and he started running after my mom and offering to do, to help with the laundry. And she was really, really annoyed, wondered where free time was going all of a sudden [both laugh]. So, I love the concept. Many thanks, Charlie, for the interview, and for your time.
No worries. Thank you very much for having us.
For this episode of Karger’s The Waiting Room Podcast, we spoke with Dr Erik Briers, MS PhD about current screening and testing modalities, as well as mental health and quality of life in connection with prostate cancer.
Erik is both an Expert Patient Advocate, member of the European Association of Urology (EAU) prostate cancer guidelines committee and the Vice-Chair of the European Prostate Cancer Coalition, i.e. Europa Uomo – The Voice of Men with Prostate Cancer in Europe. He has a PhD in Chemistry from the University of Leuven, Belgium, and was CEO of a biotech company. His strong social involvement within patient organisations began after his own prostate cancer diagnosis in 2001.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Erik, and thank you for joining us for the Waiting Room podcast. Good to have you here. Now, first of all, please tell us a bit about Europa Uomo, how it came about and your own role.
Well, Europa Uomo is the European Prostate Cancer Coalition. It was founded, let’s say, in the early 2000s. As many of those who listen will recall that there is also a Europa Donna, and Europa Donna is a cancer group for women with breast cancer. It was launched by the European School of Oncology (ESO) in Milan, and after they successfully launched Europa Donna which was very active for breast cancer. They wanted to do a similar thing for the most important cancer for men, prostate cancer.
So they stimulated a number of persons to create Europa Uomo. So, they didn’t do it themselves. They just tried to find people, motivate them, help them any way they could to create it. And among those who were called on to help them create it was myself; my urologist from Leuven, he asked me to join the group and to be one of the founders. Now, the final creation of Europa Uomo was in 2004 in Milan. So, next year we will have 20 years and I hope good years and many more to come.
Okay. What about your own role in the organization?
Well, at this moment I am the Vice-Chair of Europa Uomo, which means that I share responsibility, of course, with the rest of the Board. But I specialized myself in some subjects, and some of these are more scientific. For instance, I am, on behalf of Europa Uomo, a member of the European Association of Urology Guidelines Committee on the Treatment of Prostate Cancer.
And I follow many of the congresses on prostate cancer, on treatment options and also congresses on radiology, which is becoming more and more important in all cancers. It’s not just imaging, but also monitoring treatment efficiency, and, in case of radioisotopes, also finding out if a treatment makes sense.
And lastly, I also, we will also organize, and one of my duties, a summer school for prostate cancer patients where they can learn to become a patient expert. Patient expert meaning, know a lot about the disease, the treatments, the diagnosis, but also patient advocates, which requires knowledge of the regulatory system, of what are clinical trials, how do they work, how did they come to the conclusions and all these things. So that will be a major project for next year. First to fifth of September.
Okay, thank you for this overview. Now, I came upon the quote on your website that “prostate cancer in men is neglected and underfunded”. Why exactly?
Well, prostate cancer is one of the few exclusively male cancers. But it is, for many years it was seen as a kind of benign cancer. They said it’s a cancer for old men and old men have to die anyway. So, why give a lot of attention to this? The other reason why is men themselves. Men are not very good in marketing their own problems. So if you would ask someone: “Do you have prostate cancer?”, even if the answer should be “yes”, they very often say “no” because having prostate cancer with all the potential consequences is something that’s very difficult for a man to talk about. And I, specifically on impotence, incontinence; whereas for women, if they have breast cancer, that’s much less of an issue.
But for men, it’s very, very hard to tell to others that prostate cancer is a cancer like other cancers. It’s treatable. It is eventually not curable but controllable, and you may die from it. So what’s the big difference with other cancers? Why not be open about it even if it has very nasty side effects, which many other cancers do not have, but some cancers that we do not expect it from also have.
I see. Now, are there any care inequalities between countries and within one and the same country to be found? Did you experience anything like that?
Yes. Because I am in the European Guidelines Committee, we see differences. If you look across Europe, and these differences are sometimes important. Let’s look at diagnosis. In the guidelines we say that before any biopsy is taken, the patient should have an MRI of his prostate just to establish whether or not in the prostate there are regions, lesions that are suspicious. And there are rules to classify them; yes or no.
Well, in some countries there are either a lack of MRI machines, or time on the machines that are there. So, you can have a guideline well based in evidence, because that’s specific for our guidelines. They are exclusively evidence-based. But if the equipment is not there, the guideline will not help you, and you will have to go to second best. Ultrasound, for instance. That works, but it’s less precise. And unfortunately, we even have evidence for that, because if we have evidence for the better thing, MRI, means there’s evidence to do that instead of ultrasound.
And that’s unfortunately so far different in countries, and even in countries this can apply. If you have a federalized country structure like UK, Germany, these different sub-countries, federated states, then they have their own rules to allow some treatments, to allow some diagnostic procedures. They can decide what the reimbursement is. And in that way, even in a country like Germany, you can have differences in approach. North to south UK, some of the areas might not allow some medicines for reimbursement and might altogether not even allow patients to use these medicines. So, it is across Europe, but it’s also sometimes in smaller units like within a country.
I understand, and what goes hand in hand with this or to have a different perspective, so to say: What does matter most to the patients living with prostate cancer?
Well, the most important item is quality of life. And if you say quality of life, it is the full spectrum of quality of life. It’s not just good food and drinks. And to have the best quality of life with cancer is to be cured from your cancer. That’s the best quality. Even if this cure comes with side effects. If your cancer has been detected too late, and I think we will come back to screening later on, if that is the case, then you’re just controlling the disease. You do know there is no cure anymore with the current state of play, the current knowledge. So, in fact you know that you might die from the disease because it will stay with you. And even then you would want to have the best quality of life possible, which means that for every step in the treatment, in the controlling treatment, you do want a good balance between the benefit of the treatment and the risk involved, the side effects coming with this treatment. And sometimes, and that’s the choice of the patient, patients might say: “I do not want this treatment because I cannot accept the side effects.” Some patients will never accept chemotherapy. So that’s a no go for the clinician. They can come with something else. They may say, “Well, but the benefit of chemo is so high.” “Sorry”, the patient says, “for my quality of life”, which is very individual, “I do not want any chemotherapy brought on to me.”
Okay. And since we’re talking about the important aspect of quality of life: You conducted two Patient-Reported Outcomes Studies on this particular subject, the EU-PROMS. Would you like to tell us a bit more about that?
Yes, so EU-PROMS, there is 1 and 2, and there is another one going now which is in analysis. It’s a study that Europa Uomo from the patients’ side undertook, because what we always felt is that the clinician-reported outcomes in clinical trials and others, they were for us, to a certain level, not trustworthy as to the results. Meaning for instance, they could say “only one in three has such and such side effect”, where we from our colleagues hear that it must be much more. But we didn’t have any data to support this. So, if you don’t have data to support something, you have nothing. You have just words in the wind.
So we conducted this survey where we asked patients to report on their quality of life, but also on which kind of cancer did they have, which kind of treatment did they have so that we could try to link treatment to side effects, the severity of side effects. We did EU-PROMS 1 and 2, and in total we had more than 5,000 respondents, which is, for a study from the patients’ side, excellent. Of course, if you have so many patients, as we have for prostate cancer, that is just normal to have so many patients respond. It’s still an accomplishment, but with so many patients each year just for Belgium, a small country, we have more than 10,000 new diagnoses each year. So, having so many patients respond is no more than to be expected.
I’d like to stay with the subject of quality of life before we get to the screening bit you mentioned. You already mentioned sexual function or impotence and incontinence. I think another important aspect is mental health. So, what can be done to help and support these patients after treatment? I think especially sexual function or incontinence are rather delicate or probably even embarrassing topics.
Absolutely, and that’s why men don’t like to talk about prostate cancer. If you have to say “I have prostate cancer”, the other party will immediately think “Oh, maybe you’re impotent. Hmm.” This needs the patients start to talk about it. Because it’s not so strange to talk about your potency, and especially in relation to a cancer. You haven’t caused this disease! So, if you are due to treatment, become impotent, that’s a consequence. That’s a side effect. And it is something that clinicians are not aware enough that they have to discuss this. It’s the same with incontinence. You have to discuss with the patient that this can happen, but you also have to discuss with the patient what you can do if it happens.
Because if you say to a patient, “Well, I can give you a surgery, and you will be more than one in two impotent and one in ten, at least, partially incontinent for a certain period, but if this happens, I can do this and this and this.” That gives a completely different picture to patients. And then they might accept also to talk a little bit more freely on it. If you try to push it under the carpet, the patient is not willing to go and look there. He’s not going to look for the dust under the carpet [laughs]. And it’s important to explain patients the options they have, and it’s also results from the EU-PROMS that on the question “Did you do something to remedy your impotence or your incontinence?”, the percentages that did are disappointingly low, and this is not in relation to their age.
So there should be more men who would like to do something about it, but perhaps they don’t know that they can, that it’s allowed and that there could be help for them. Not in all countries; even if we look from north to south in Europe, then we see that in the northern part there is much more openness about prostate cancer. And if you go deeper into the south, like Italy and Spain, less and less, and the, let’s say, the break line between north and south runs through Belgium [laughs], through our language barrier. And it’s a fact. We have a patient organization in the north and no patient organization in the south.
Oh, that’s interesting!
That’s also telling us that it’s more difficult to bring patients together to talk about it if there’s no organization. But if we organize an activity in the south, they come, but they don’t want to organize [laughs].
Okay, but at least they turn up, which is nice. We mentioned, well, you mentioned screening beforehand, and I’d like to get to that topic. Which role does early detection play in connection with prostate cancer, especially related to screening and medical checkups?
Well, one thing that is important to know before you go to screen is the question of: “Can this cancer be prevented?” And then the question is: “Do we know what causes prostate cancer?” And the answer is no. But other cancers, there are many cancers for which we know some of the causes, some of them. So they could say for some like colon cancer, try to avoid red meat, processed meat, because we know from statistics that the chance to get colon cancer with consumption of huge amounts of this is higher. It’s population statistics. For [prostate] cancer we have nothing of this kind. Nothing. So, if you know that you cannot do anything to avoid the cancer, then there’s only one solution; that’s go after it and try to find it early, which means organized screening.
Organized screening has to be because with all this, like breast cancer, there’s always a chance that you will find cancers that do not need your attention. We call that overdiagnosis. And if we treat these cancers, we call that overtreatment. But if we do nothing to find those that we can cure and need our attention, we are undertreating the population. And that’s what happens now. In early diagnosis, we find too many men with cancers that have already spread. So, if you take Belgium with more than 10,000 new cancers each year, more than 10% of these, these are not precise figures, more than 10% of these has already advanced stage and metastasized. So they are lost! You cannot cure them; you can hope to give them good soft control, not too many side effects, but for some there’s only hard control, which means lots of side effects, being sick, nausea, etc. for many years.
Well, the survival of a metastasized prostate cancer is a few years. So that’s why we need to find them in an early stage. But we have, and this is also with the European Association of Urology, with the clinicians, that is a model that we want to follow to do screening. And this has come into an acceleration point due to the European Council’s advice to promote screening for prostate cancer. It was a very soft advice due to some countries, but it’s there. There was also attribution of EUR 10 million, approximately, to the lung, gastric and prostate cancer. So we have a project for which we have about three to four years to prove that screening works.
So, how are you actively encouraging men to do screening and testing? How do you reach them?
Well, at this moment we have no screening, So, we cannot say that we can’t reach them. But the idea behind this all is that given that a lot of men, perhaps 50%, don’t know where their prostate is is very strange, don’t know what it’s for. Who cares? It works, I hope [laughs].
We first need to inform men of the prostate. What is this organ? What does it do? What is it for? What can it have as diseases? Because there’s more than just prostate cancer. And if they know good enough what it is, then they can be invited to screen for cancer, which means that this invitation will come from a central office like for breast cancer, a similar organization. And they will, as of a certain age, which depends if they are in a risk group.
For instance, the sons of a man who was diagnosed with prostate cancer before the age of 65, these boys are at risk, so they should come earlier. If they are from African-Caribbean descent, their risk is also higher, so come earlier. Come as of the age of 40, whereas the other men at age 50, that’s fine. And even then it’s not “come every year” like we do in mammography. No, no, no, no, no. We will test for the PSA, which is prostate-specific, not cancer-specific.
And we will have an algorithm that decides, based on this result, whether or not you will go to the next stage, risk assessment, eventually MRI, biopsy. Always send you back to the screening pool where you can come back, not necessarily next year, it can be in three years, can be next year. Depends on your level of PSA. So that is what we call the risk-adapted screening for prostate cancer. And even then, and this is for us very important, if the cancer is detected, it is classified. And in our guidelines, we clearly see several stages in this classification. And one is low risk. When you find a low-risk prostate cancer, there is only one treatment, one option available: active surveillance. And if they are at a good age, 75 or something, then they would say watchful waiting. The modalities are similar. If it is intermediary, doubt for active surveillance is still there, but from then it is active treatments. Intermediary risk, high risk, certainly 40% of them would otherwise die, are locally advanced.
So, there’s a clear strategy of “If we find something, okay, we sit down, we discuss and we send the patient to the most adequate treatment”. If we look at this PSA test, if we look at the situation in Belgium, where we have if the patient wants PSA he can go to his doctor. This is not screening. They call it opportunistic, but the man is not opportunist. He just takes care of his health. Only less than 2% of PSA tests go on; 1.5% about goes for a biopsy. And of the biopsies, it’s about 40%, it’s low risk if positive. So, most of the men, they get it right but at least we find those who should not get away, who should be treated.
Yes, that’s the important part. Exactly. Well, that was quite enlightening. I think in Germany, where I live, it’s you have to go back every year, but you have to pay extra for the PSA in your blood sample because it’s not included by the insurance companies, but you need to pay a little bit extra, which is fine, I think. But you’re on the safe side then and get notified if anything seems to be unusual. But I think that’s probably different in every country, even in Europe.
Yeah, well, it’s the same in most countries that the PSA is not reimbursed, except for those who are in the risk group and for those who had a diagnosis of prostate cancer. If they had a diagnosis of prostate cancer, then they are in monitoring. And in Belgium, for instance, for monitoring, they can have two tests each year reimbursed if they are above 50 and are in risk; only the risk at this moment, they also get one test the year reimbursed, not the second one. It came from something else, but that is as a consequence of budgetary situations.
Yeah, I understand. Now, you mentioned at the beginning clinical trials. Which role do clinical trials play with regard to prostate cancer and how can they help?
The clinical trials are extremely important. And I don’t only say that because I’m in the guidelines committee, but you can never have a treatment for which someone says: “I use this in a patient.” And he said: “Look at him, he’s still alive after ten years!” That has absolutely no value. The only value these case studies have is that they can be hypothesis building. Meaning: So you have done some case studies. You have found some patients who you think fare well. You get the data. Fantastic. And then you say, well, this may be a treatment for patients with prostate cancer. Let’s do a trial, a clinical trial. If it’s a new molecule, then it’s a different kind of thing. Then you even have to prove that its toxicity is acceptable because you could say: “Okay, let’s give this molecule. I know it’s very poisonous, but it may help.” Whoa, we say no [laughs]. And even if it might help, if it kills more than half of the patients, it will never, even with more than 5% it would never go.
So, then you go to a clinical trial, and if you have an existing molecule that you want to test or a completely new molecule, once you’ve passed stage one toxicity, stage two, you prove that it has some effect on prostate cancer, then you go to a phase three, And in phase three you will do a big clinical trial and you will compare groups, you’ll compare a group that you will give this new experimental medicine to another group that besides, that has standard of care, and eventually they get on top of it a placebo. So it’s not that you compare patients, you only get a placebo to patients who get standard of care, plus they get both the standard of care, which was a misconception at some time.
So it’s: You do not abandon any patients, and at the end you will compare the two groups and you will say: “Okay, those who got the experimental medicine, they on average live three months longer. Overall survival, performance, because we are still working on steps of three to four months.” So it’s not fantastic. But we work here on patients with metastatic prostate cancer. They failed several lines of treatment, and then you say, okay, let’s try if we can do something else, which recently happened with lutetium therapy.
It is this evidence that will be used by the European Medicines Agency to formulate an advice to the Commission. And then the Commission can say: Okay, we believe this advice and we will allow it the market authorization in Europe. And then comes the next step, discussing reimbursement, access to the market, and so forth. And in the Guidelines Committee, we need the same evidence to be able to bring this new treatment into the guidelines. So if there’s no evidence, only case reports, that’s the lowest of the lowest level of evidence. It can never qualify for changing guidelines. It’s impossible. And the expert of this case studies, the expert will be ignored. His evidence is worth almost nothing.
It has to come from very well controlled trials. We have to eliminate the element of chance. We are not throwing a dice to decide who lives or not, because the difficult thing is that if you have four months overall survival benefit, you also know the side effects, but you don’t, then know nothing about an individual patient. But that’s population statistics. And for an individual patient who starts in a clinical trial or later takes a medicine, he will only know if it worked for him, unfortunately, when he dies. Because if he had 15 months on average and he dies at 20, then he can say, worked well for me – perhaps. The longer he survives, the higher his chance that it really made a difference. But for the group, you can really prove that it makes a difference.
I see. I’ve got a general question about the role of patients nowadays and how you view that. Previously, patients were often regarded as being sort of passive recipients while the doctor was sort of the or the GP was sort of the [demigod] dressed in white. Whereas nowadays it’s more about engaged and empowered and informed patients which are actively involved in decision making. How do you perceive this and how do you think that the patient situation has changed?
Well, the patient situation has changed dramatically. I am a patient for 20 years. I was diagnosed in 2001, treated in 2002, 2nd of January, after the first glass of the year. The patient was in fact the horizontal patient, and he had to be patient. “I’ll hear you, doctor, you say this, in three months. Okay, I’ll wait for it. I’m patient.” The patient is no longer patient. We want for things to advance. That’s the side of the patient advocacy. We are there!
I am in a guidelines committee where they decide on treatments based on evidence, and I participate there in an active fashion. That’s my role to be active. We are at conferences, we listen to the experts and they appreciate us because they are not saying, “Will you now please leave? Because now we have to discuss doctor business.” Never had that. And I am there for many, many years. So that’s the side of the group of patients because in the group of patients or the patient advocacy, expert patients, we have really made steps. We are involved in clinical trials, we are involved in evaluating clinical trials to say whether or not for us they are relevant or not.
Some find that shocking that patients can say if a clinical trial is relevant for a given population. And then you have the individual patient. It’s like the statistics. So, it’s significant for the group, a new medication, but what does it give other patients? Well, the individual patient, they are very different, which means that you cannot say that the patient is now co-deciding. That doesn’t work as well for everyone because not everyone has the same level of literacy and will be able to converse with his clinician to the same level, have taken in some information before the consultation, has knowledge of side effects, has talked to his patient organization to know: What am I to expect from this treatment? Has anyone else of you all guys got this treatment? How did it work for you?
So this means that we have the patient level, like in statistics, you will have this distribution of patients who are well-informed and they know exactly what they are up to, and they can really co-decide. And at the other end of the spectrum, you will have patients who – they don’t understand. And they will still need either a patient to help them or a nurse specialist to help them, the clinician to help them to understand what they need to understand then to help to make that decision. That is, that could mean life and death for them, not tomorrow, but in the short or long run so that they know what they’re up to and they know what will happen to them.
And that’s a difficult thing because not all clinicians, and I’m speaking now Europe-wide, are good at explaining things to patients or at referring patients to a nurse specialist or to a patient organization so that the patient can get the most and the best out of the information available and understandable for them. And the small group, 16% of patients that are themselves highly educated, you can forget them. They’ll find their way, and they will discuss, and if needed, they go to Google or someone else and they will find the information. They will understand, analyze. They are not where we will gain public health. The public health will be gained in the 30–40%, which is a very high percentage, of the population that have difficulties to understand medical advice and aspects of treatment of side effects that they should need to understand before they make a decision.
Definitely.
So, shared decision making is fantastic, but unfortunately it does not work for everyone.
So health literacy is really important.
It’s extremely important, which also means that the information you prepare, you can never prepare information for everyone because for some, they will say, “I read this in kindergarten”, and for others they will say, “Oh my God, it’s so complicated”. So you will have to bring levels of complexity so that also a patient with less literacy can find his way through images, through giving examples from other worlds so that they can understand.
I see. And this leads me to my last question of this interview. Since September is Prostate Cancer Awareness Month, what are your plans for the awareness month? That is, your own plans as well as Europa Uomo’s plans.
Well, so for this year, we have a focus completely on this early detection and screening. This means, but we have to delay a little bit activities that we wanted to do. We have already organized several times a European Prostate Cancer Awareness Day, the EPAD, in the parliament. This year we plan to do that, but later in the year because we are not ready to do it in September. And we have never linked all our activities on this month because we could only start the awareness on screening in June. And that is just not enough time. But we join the EAU because we work closely together, Europa Uomo and the EAU.
We are not the source of the science. The source of the science is the science, and that’s EAU. That’s us, if we talk about EU-PROMS. We create, we generate data, too. And this way we work together for one goal. We do want to limit the number of men diagnosed with prostate cancer in an uncurable stage. That’s where we want to go. But we can never eradicate prostate cancer. There is no vaccine, so we will have to live with it and we have to work so that we can prevent the unwanted to happen.
If we can find someone in the stage where he has a localized cancer, we can treat him curatively. The costs and the consequences are far less than if he has metastasized cancer. Because there is, if we talk about side effects, usually the big ones come up. Incontinence, impotence – the two I’s. But there is also the androgen deprivation therapy, cutting down your testosterone, if you have metastatic cancer. I can assure you that the consequences of being on androgen deprivation therapy are terrible. And that is something that comes clearly out of EU-PROMS 1 and 2. And you cannot, it’s a treatment. But unfortunately, not everyone discusses this clearly with the patient.
And that’s a constant thing that we want to discuss and bring to the patients. So, also now we want this to cross to the patients, and one of the two I’s, the big I’s, is incontinence, and that will be one of the major points of attention of Europa Uomo, together with our colleagues from other disease areas like kidney, like bladder, who also have incontinence as a consequence. So incontinence is on the radar and is this year’s main focus of the EAU, of Europa Uomo and of the other colleagues from bladder, etc.
Okay, thank you for this explanation. So basically prostate cancer awareness is each and every day anyway, but it’s quite helpful to tie this to awareness months, of course. Thank you very much for the interview, Erik. That has been really enlightening. I’ve learned a lot about prostate cancer. Thank you.
Okay. Glad to help.
For this episode of Karger’s The Waiting Room Podcast, we spoke with Elisa Martini and Helen Crawford from the International Federation of Psoriasis Associations (IFPA) about the skin condition psoriasis and the upcoming Psoriasis Action Month in August.
Elisa Martini is the Policy and Advocacy Manager of the International Federation of Psoriasis Associations (IFPA) and is thus responsible for developing and implementing IFPA’s advocacy and policy strategies at a global level. She has a Master’s degree in pharmaceutical sciences and a Ph.D. with a focus on psoriasis.
Helen Crawford is both a Board Member of the International Federation of Psoriasis Associations (IFPA) and Programs Manager at the Canadian Association of Psoriasis Patients. She is committed to patient engagement and has participated in several patient advisory boards. Furthermore, she has a degree in Linguistics from Carleton University and a Certificate in Social Media from Algonquin College.
The IFPA works on behalf of 125 million people living with psoriasis and/or psoriatic arthritis.
Note: The statements and opinions contained in this podcast are solely those of the speakers.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello and welcome to the Waiting Room podcast. First of all, please tell us a bit about the International Federation of Psoriasis Associations, your work for the IFPA and your connection with psoriasis?
Elisa: Yes. So, IFPA is, as you said, the International Federation of Psoriatic Disease Associations, and it was founded 50 years ago, actually more than 50 years ago, in 1971. We have celebrated recently our 50th birthday, let’s say, and we are an umbrella organization. Our members are national and regional psoriatic disease associations. They work all over the world. We have 61 members, and together we represent the voice of more than 60 million people living with the disease.
And I work as a policy and advocacy manager, so I’m in charge of the policy work at the international level, but also supporting our members with the advocacy and policy work they do nationally and regionally. And I have been working for IFPA for over five years, and before that I’ve been studying psoriasis as a researcher.
Helen: And my name is Helen and I am connected to IFPA as I’m newly elected to the Board of Directors in September. So, I’m a board member, but I’m also with the Canadian Association of Psoriasis Patients. It’s one of the member organizations of IFPA, and we work in Canada to educate those who are living with psoriatic disease, their caregivers.
We work to raise awareness about the skin condition, which I think we’ll get into a bit later. And we also advocate on behalf of patients living with psoriatic disease for better access to care. I’ve been involved with the organization since its inception in 2012 and have been working here ever since then.
Thank you. And see, I’ve already learned that it’s not IFPA, but IFPA, and I will use IFPA accordingly for the rest of the interview.
Helen: It’s easier than saying the whole word [laughs].
Definitely. So what does IFPA’s broader advocacy strategy and goals look like?
Elisa: So, we basically work twofold. Our aim is to unite the psoriatic disease community and lift the voices of those living with psoriatic disease. And we work twofold. We work at the international level with organs like the World Health Organization or the United Nations to represent our members and all people living with psoriatic disease. And we do this by being present in those settings where the decisions are made, and we try to advocate really for our community and demand the representation at the global level and in the global development agenda.
At the same time, we also want to strengthen our members that work at the grassroots level in their communities, in their countries. And we do this by supporting them, giving them tools, giving them resources and forming them really to be the best advocates they can be. And some of our programs and projects, for example, the Ambassador Project, we have, we form ambassadors for psoriatic disease that can speak up for us and for our community.
We organize a medical conference every three years to get in contact with the medical community and spread the reason and the latest findings within the world of psoriatic disease research. And we also hold a patient forum every year where we discuss the needs of the people living with psoriatic disease in certain areas. And then obviously, one of our biggest and most established programs is World Psoriasis Day that we organize every year on October 29.
Okay, thank you. Now, I’ve come across IFPA’s theme for 2023, which is “Universal health coverage”. And I found that quite interesting. Could you please tell us more about this theme in connection with people living with psoriatic disease?
Helen: Yeah, sure. So, in fact, the theme for the year, it seems in the global health community as a whole, is centered around universal health coverage, because actually later this year, the United Nations will be gathering all of their government representatives to discuss universal health coverage.
For people living with psoriatic disease, it often requires lifelong treatment. There is no known cure for psoriasis, so they do need treatment for their whole lives and as well as management once they find a treatment that’s effective. But treatments can be very costly. In addition to that, people that are living with psoriatic disease are more at risk of developing other chronic non-communicable diseases that also require lifelong monitoring management. And those costs can add up quickly when they’re not only just trying to manage their psoriasis, but the other comorbidities that could come with it. The costs can add up, and it would be unsustainable for a lot of people to be able to treat themselves if they don’t have proper coverage.
So, universal health coverage will actually ensure that people get the care that they need without falling into poverty, which a lot of patients sometimes, they have to decide between treating their psoriasis or feeding their families. This is one of the aspects that we really want to lift under the universal health coverage idea. But we also, and so it’s actually our theme for World Psoriasis Day as well as, you know, for the work that we’re doing every year, we have a focused theme. So, it is universal health coverage.
But we’ve also learned that that means different things to different people depending on where you live in the world. Some countries already have universal health care, and so it does mean, but there are still a lot of gaps in care for people living with psoriasis. Be it access to a dermatologist. It’s not just the cost factor. Where they live can often mean that they don’t have efficient access to a dermatologist. Some people wait a year or two to see a dermatologist once they feel that there’s a problem.
So, we also, along with the universal health coverage theme for psoriasis, so we’ve also added “access for all”. So, that doesn’t necessarily just mean access to medications, but access to a dermatologist, access to the supports that they need. And we encourage our members to use the universal health coverage theme in their campaigns or the work that they’re doing to best suit their situation, depending on where they live.
Okay, thank you. Now, you’ve already mentioned the financial aspect and the issue of access, but are there further unmet needs or possibly even demands of patients living with psoriasis?
Helen: Yeah. So, yeah, I did mention, you know, the access to a dermatologist, the costs to treat psoriasis are pretty universal. But we also, you know, along with focusing on access to care and treatment, there’s also awareness of the disease. There’s still a lot of stigma that comes for people living with psoriasis. And we want, you know, we do a lot of work to make sure that people understand that it’s not just a skin condition, it’s not just a rash, but there’s a lot of deep, complex issues that come with living with this disease.
We also work to raise awareness about the comorbidities of living with psoriatic disease. And there are several. And people need to be aware of what they are so that they can make sure that they are getting the care that they need. People living with psoriasis have an increased chance of developing psoriatic arthritis, which is why we also talk about psoriatic disease as opposed to just psoriasis and psoriatic arthritis.
And people need to be aware of what to look for if they’re living with psoriasis, because early treatment can also, can be really important to those that are living with psoriasis. So, those are some of the few things that we are working on at IFPA to ensure that people know more about this disease. And it’s not just a rash.
I see. To which extent is there a difference between children and adolescents as opposed to adults, especially regarding the associated challenges?
Helen: So, one of the things about living with psoriasis is that there is a hereditary component to it. Not all people who have an immediate family member living with psoriasis will get it themselves, but there is an increased chance that you will. And psoriasis in childhood is not that uncommon as we thought it was, you know, many years ago, And in fact, about a third of psoriasis cases actually start during childhood.
Psoriasis can differ from adults on their onset. So there’s, when you live with psoriasis, there are different triggers that can cause the onset of the disease. And in children it’s likely a trauma to the skin. So, an injection, a burn, some sort of scrape, stress or a bacterial infection such as strep throat; while in adults it’s more common that their triggers are, you know, related to a drug reaction, due to smoking, alcohol use or an underlying infection such as HIV. Children with psoriasis, and while psoriasis in general can often be mistaken for eczema, and they’re not the same. They can look similar, but there are a lot of differences.
So, it’s important, especially in childhood, to get diagnosed early. One of the major components for people living with psoriatic disease that can be increased in childhood and adolescence is that self-perception and body image for children and adolescents living with a very visible condition. There’s a lot of stigma associated with that, like I mentioned before, and, you know, people in their youth, it’s a very delicate time of life. They’re, you know, in school, and they’ve got a lot of external inputs coming at them from social media, from their friends and peers.
And having a visible disease like psoriasis or psoriatic disease can be very devastating for them, their self-esteem. Young people can feel isolated, that they’re alone in this. They get teased and bullied when they’re younger. So, this disease can have a big impact on their families, too, because it does affect their quality of life and their mental health and how they might be behaving at home as well.
I see. Let’s talk about treatment for a bit. Which treatments for psoriasis are currently available and are there maybe also new treatments on the horizon or is that difficult to say per se.
Elisa: So, there are several types of treatment available for psoriatic disease at the moment. They are prescribed depending on the severity of the disease and on how much body surface area is involved. For example, if the disease is mild or confined to just a few areas of the skin, then doctors could prescribe creams and ointments. For more extensive areas or more severe disease instead, there are several systemic treatments affecting basically the whole body, and the most advanced are biologic treatments. So, a different array of possibilities and treatments, and depending on the skin involvement and the severity of the disease, and also hopefully the patient preference to one [treatment] or the others.
On the horizon: So basically, many of the especially most advanced treatments, they target those molecules that are involved in the disease. The disease is, simplified, caused by an overreaction of the immune system. So, there are several targets within the immune system, and this inflammation that is out of control that can be targeted by medications. So, the current new advanced treatments and also treatment in the horizon, they are targeting these inflammatory molecules that are involved in the disease. On the horizon treatment for new targets are promising. The hope is to find treatments that target and reduce the disease while causing the least number of side effects as possible.
But there are also treatments coming out for some forms of psoriatic disease that are rarer, and they just have a different mechanism of action compared to, a different in nature compared to other forms of psoriatic disease. So, this population of patients that have not had a functional treatment that is performing well for them, they might hopefully find something that really works well and that can help them.
Obviously, the dream of our community is to have a cure. We are not there yet, but there are good treatments at the moment, so it’s very important that everyone has access to them and we get back now to universal health coverage and the theme of the year access for all. So really, the treatments to manage the disease well exist. People need to have access to them.
Definitely. I agree. And I’ve also come across the quote “Psoriatic disease is more than skin deep”. And I quite like that because it really hits the nail on the head, and it’s featured on your website I need to add. And although we already mentioned the aspects of quality of life for those living with psoriasis, is there maybe anything more you’d like to add on top of that quote?
Elisa: Yes. Psoriatic disease is more than skin deep. Like Helen said, it’s not just a rash. It’s not just a cosmetic issue. Unfortunately, this is a misconception that is still very spread. And we have talked about the impact on quality of life, on mental health, of the disease. There’s also an impact on workplace and career where people have difficulties maintaining a job, for example, because sometimes they need to take leave of absence because of the disease, or because for some jobs that are in contact with the public, it’s that this can make people the client uncomfortable. And so it’s difficult for the person to retain and continue working in a job in contact with the public.
Then we have talked about the financial aspect of psoriatic disease that makes the disease more than skin deep. And also, we don’t have to forget about the impact on families, on family life – for the person living with the disease, but also for everyone involved. So, difficulties maybe to plan ahead or plan vacations, or even medications impacting fertility. As Helen mentioned, the disease has a strong genetic component, so this might be a worry for people who want to have a family, start a family and have children. So, this is really a lot to think about for a disease that is said to be just a cosmetic disease.
Helen: If I can also add to that, too, if you don’t mind, we’re doing a lot of work in Canada right now about the impacts of psoriatic disease on intimate relationships. And we’re finding more and more so, especially with people who are impacted with psoriasis in intimate areas, it has a devastating effect on their relationships, their intimate life, their dating. And that compounds all those other things that Elisa’s just mentioned when they struggle with things that they’re embarrassed to talk about as well.
Yeah, and I can imagine that it does have quite a huge impact on mental health or probably on the stress level of those affected, too. I’d like to come back to the previously mentioned stigmatization and isolation, because I think that ties in with the mental health component. And I was wondering about the myths and misinformation that can be found, for example, on the Internet, for example, that psoriasis is contagious and stuff like that. And I believe you’re working also to get rid of these mistakes or basically it’s not correct. Would you like to add something to that?
Helen: Yeah, certainly. I mean, definitely one of the big messages is that you cannot catch psoriasis from kissing somebody with it, from standing beside somebody, sharing a seat on the bus with somebody living with psoriatic disease. It is not contagious. Elisa has kind of already mentioned what causes psoriasis or how psoriasis manifests, but we actually still don’t know what causes it, and we can’t cure it, but we can definitely treat it. But it is not contagious. And if you see somebody living with psoriasis, there has to be no fear there.
Unfortunately there’re other myths that come along with living with the condition, including people think it’s caused because of bad hygiene, that you don’t wash enough or that sort of thing. And that’s, in fact, actually the opposite is true that people with psoriasis, because things are so tender and sensitive, tend to pay a lot of attention to their skin care and being clean just for the risk of infection and that sort of thing. So, it’s actually the complete opposite. You know, we often talk about the fact that people think, “Oh, it’s just a skin disease. It’s just a rash. What are you worried about?”
And, you know, as we’ve touched on, it has severe impacts on people living with the disease, not just what manifests on their skin. It is an autoimmune condition that affects other parts of their body. There’s a lot of associated conditions that can come with living with psoriatic disease, such as diabetes, cardiovascular disease, obesity, metabolic syndrome, just to name a few, that people who are living with psoriasis need to worry about as well.
And there are also several forms of psoriasis that can be quite debilitating for people, especially living with psoriasis on your feet, for example. If you work standing up and, you know, you’re in so much pain, you can’t even walk. And there are some rarer forms of psoriasis, such as generalized pustular psoriasis, that can actually be life-threatening. It’s really important to be under the care of a health care provider, especially if you’re developing something rare like that.
Another myth is that it’s really easy to diagnose. You just look at it and go, “Oh, it’s psoriasis”. That’s not actually true. We’ve learned that people, it can take them several years to get to a proper diagnosis, which then delays effective treatment. We know that starting treatment early is really critical for people living with psoriatic disease. So, you know, anybody who suspects that they might have it should see their doctor as soon as possible.
And the other myth is that it can be cured. And, you know, as we’ve said a few times now, while there’s lots of research going on and a lot of promising work being done, there’s still no cure for the disease. And, you know, I see on the Internet all the time these magic pills and “I’ve been cured and go, go here and you’ll be cured”. And, you know, it’s really important that patients and people impacted get credible information from credible sources, such as IFPA and that they really need to be under the care of a licensed health care provider because there is no magic pill. While we wish there was, there isn’t. And there is no cure.
Definitely.
Elisa: And another fact on that psoriasis is easy to diagnose is that, as Helen mentioned before, it can be mistaken for eczema sometimes. But also psoriasis may have a different presentation depending on the color of the skin. And a lot of the information, also for medical professionals, is on people with white skin. So we have a project that IFPA called “All the Colors We Are”, where we show images of psoriasis on different skin colors. And we have a collaboration with the International Psoriasis Council, which is an association of medical professionals and dermatologists that are looking into the issue of diagnosis of psoriasis and presentation of psoriasis on different skin colors. So, this is another issue linked to the fact that it’s not always easy to diagnose psoriasis.
Yeah, I think that’s a very important aspect of mentioning people of all colors and not just us white people, so to say. Yeah. Thank you for adding that. Since we were speaking about the internet and credible information and trustworthy information, is there, for people with psoriasis, are there any apps or digital tools and gadgets that are trustworthy and helpful and which you could recommend?
Helen: So, you know, like you said, there is lots of information out there, and we’re in the day and age of Dr. Google and all this other stuff. And we really recommend that people contact their national psoriasis association. And they are all around the world. If they have trouble reaching out to them to contact IFPA. We can, you know, facilitate introductions. The organizations that operate on a national level, they’re actually the experts in the disease. This is what they do. This is their passion. And many of them live with the disease themselves, and they can provide the proper support and guidance to those resources that people are looking for.
We also, and Elisa’s alluded to it, have great information on our website, as we also have a map of all of our organizations and the projects that they’re participating in and how to reach out to them. But we always believe that patients should be seeing a health care provider to get the information that they need and not always trust what’s out there on the Internet.
So, I’m not necessarily going to sit here and recommend apps per se, but I would strongly encourage people to reach out to their national associations who can give them the information they need, that’s relative to where they’re living. Because what we’re doing here in Canada may not be relevant to somebody living in Japan, for example, or have the same value to that patient as something that’s a bit more regional.
Elisa: And in their own language.
Helen: Exactly.
Yeah, I think that’s a very important aspect. Yeah. Okay, thank you. We’re approaching the end of the interview. And last but not least, even though you already mentioned it at the beginning, what are your plans for Psoriasis Action Month in August as well as for World Psoriasis Day on October 29?
Elisa: So, at IFPA, every month is Psoriasis Action Month, and so we are advocating all year around. And now we’re busy preparing our patient forum in the Asia-Pacific region, and are gearing up for World Psoriasis Day. So, as we said, the theme is “Access for all”. We have good medication, good treatments for psoriatic disease. Everyone needs to have access to them. Everyone needs to see a dermatologist, their rheumatologist, connect to mental health professionals if they need that. So, we must ensure that good care reaches the people who need them.
And we are preparing the campaign material. We are giving ideas on activities. We are making sure that the community is connected to exchange ideas and also to amplify the voice of the whole community. And what we will do on World Psoriasis Day is really to lift the community, is to lift our associations and all the amazing work they are doing internally in their countries, in their region. So, we want our message to reach as far as possible. So, this is really our job, the World Psoriasis Day, and before that to give everyone the tools to make sure that everyone succeeds.
Excellent. Thank you very much. That has been quite enlightening. A lot of input and food for thought. Thank you, Helen. Thank you, Elisa. And, thanks a lot. Bye-bye.
Elisa: Bye.
Helen: Bye.
For this episode of Karger’s The Waiting Room Podcast, we spoke with Professor Antonio Piga about thalassemia, which is an inherited blood disorder, and one of the two main types called beta thalassemia in particular.
Professor Piga is Professor of Pediatrics at the University of Turin, Italy. Furthermore, he is the author of the recently published Fast Facts for Patients booklet “Beta Thalassemia”, which is freely available online.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Antonio and welcome to the Waiting Room Podcast. First of all, what exactly is beta thalassemia?
It’s an hereditary anemia that is a form of anemia that is coming from the genes, from the DNA from the parents. That is to say that the child with the disease may be born only when both parents are a healthy carrier of this disease.
And what are the symptoms of beta thalassemia?
Well, the disease may be more or less severe. Normally, it’s a severe form. So, after a few months of life, a child that had a perfect pregnancy, perfect delivery, and perfect few – two, three, four – months of life, then slowly becomes to be anemic. And the symptoms of anemia are, it has to be a bit pale, but at that age is not to eat normally, not to sleep normally etc. So, the parents normally take the child to the doctor and there it is suspected of anemia and a blood test to check what is the reason for it and then the easy diagnosis.
So, the diagnosis of the severe anemia is easy. The diagnosis of a very mild form of the disease may be not so easy because it comes when a person is an adolescent or a young adult. We test them for other reasons. But this is just for the very mild forms.
What I was wondering, since there are two main types, what differentiates beta thalassemia from alpha thalassemia?
Yes, they are very similar, both for the healthy carrier and both for the affected person, because alpha and beta are simply the two different chains that form the hemoglobin. The protein we have to take the oxygen from the air and take to the body. So, the difference is from the medical, strictly from the medical point of view, there are a lot of differences, but this is boring details for us as a physician. Generally speaking, both are severe anemias; hereditary, obviously. And let’s say that alpha thalassemia is a bit milder than beta thalassemia. And it requires a slightly different treatment. But I will stop here talking about the differences.
That leads me to my next question. And since you already mentioned the diagnosis part, could you please explain how the screening for and the diagnosis of beta thalassemia looks like?
Yes. For the affected person, it’s easy. So, there is some symptom of anemia, a blood test. And the blood test revealed that the hemoglobin in the blood is lower than expected, a lot lower than expected, and that the red blood cells are different from normal. The trend in thalassemia is that the red blood cells are smaller, very small, and that the hemoglobin content is lower than normal. So, many, we say, red blood cell parameters in the basic blood test do have alarms.
And so, for the physician, it’s easy to orientate himself to say: “Oh, this should be or a thalassemia or a severe iron deficiency anemia”, and then to differentiate the two is very easy. To have a perfect diagnosis we do DNA testing. Today, there are specific DNA testing that are targeting exactly to the alpha/beta chains. And they can see genes, and they can see easily if a thalassemia is in or not. This is for the affected person. And the same is for the healthy carriers.
Now, you mentioned already iron deficiency. What other complication signs are there that patients with beta thalassemia frequently encounter?
Yeah, the patient with beta thalassemia has the effect of anemia. So, if the diagnosis is delayed or if, as happened even today in many countries in the world, it is not possible to give the basic treatment to a thalassemia, what happens is that there are symptoms of chronic anemia when the anemia is not compensated. They are so many and important. And for thalassemia there is something that is specific, that is not just to be pale and to have problems in the normal activities, physical activities etc., but also is a peculiar anemia where the bone marrow, that is where we make the blood, the interior part of the bones, the bone marrow tends to enlarge. And so the bones tend to enlarge.
Where the thalassemia is severe, there may be also bone alteration that may become important. So, also the physical aspect may be altered, but this is true where treatment is not there or is very poor for the patient. The other problem of this very severe genetic anemia is that there is the trend to iron overload. That is the opposite of iron deficiency, because wrongly the signal in the body of the affected person is to absorb a lot of iron from food and to try to make more and more red blood cells even wrong, but more and more red blood cells. So, there is an iron overload that in the long term is the most important problem.
I see. So, which treatment options are currently available for the treatment of beta thalassemia?
Yes, basically you treat a severe anemia with blood transfusion. That is, to have safe blood from a donor that is compatible, that is cross-checking, and you give this blood to the very severe anemic person and you temporarily, that is for two, four weeks, you compensate the anemia. So, you may have a normal value in the affected person, and so this is a very potent compensation, and this is also compensated in part also in the trend to have bone marrow and the bones enlargement, etc., etc.. So, you prevent a lot of the complications of the disease.
Obviously this is not the cure, this is just a compensation. So, in countries where blood transfusion is good, is safe and high-quality, the disease is well compensated. So we have today persons with very severe forms of beta thalassemia that are in their sixties, for example. And they are well, they do have a good quality of life even with a lot of treatment, but a good quality of life. The other key point of treatment is iron chelation, that is to take a drug every day to have the excess of iron removed.
Excellent. Might there also be cases where surgery is needed for treating beta thalassemia?
Yes and no. Yes in the sense that in the past, when the disease were was not well balanced with the transfusion, it happened that the spleen becomes very large and very, let’s say, hyperactive in that its function was giving problems, that is having the transfusion not working properly because the spleen was consuming, that is trapping and eliminating red blood cells even when they were young enough to work properly.
And so in these cases, in the past very often, today very rarely, where treatment is okay, we need to do a so-called, we say splenectomy, that is to have the spleen out. In good hands not such a difficult and dangerous surgery. But wherever it’s possible we try to prevent the surgery, not for the surgery per se but for the effect. Because, as generally is well known, it’s better to have everything we have by nature. So, without the spleen it is possible to live safe forever, but with some more risk for some special infection or for a trend to have thrombosis, that is the blood clotting in the veins.
Thank you for this explanation. Now, we were talking about current treatments. Are there maybe any new treatment modalities on the horizon or which are currently being tested in clinical trials?
Yes, a lot. This is a very exciting chapter today because in the past, differently from the past, where the patients and parents and the community were asking for treatment for this disease, that is a very important disease, but it’s considered rare, generally speaking. But if you go to many countries in the world, it’s not rare at all and it costs a lot to the community and to the society. So, in the past, no treatment for a genetic disease so severe, so no gene therapy, let’s say, in the past. Today, we have some gene therapy that has been approved from the main, let’s say, regulator for these like the FDA, the American one, or the EMA, that is the European one.
But there are still question marks on these; one is the long-term safety, because even today to go to the genes and modify it’s from the safety we got to the point, from the efficacy, sorry, but from the safety there is some question mark not to put some disorder that may give long-term problems from the treatment. That is the problem.
And there are new approaches to gene therapy that is not to use a viral vector or for inserting the right beta gene in the cells of the affected person, but to use other techniques that, if I say a name, CRISPR-Cas9, you say what a horrible term it is, but it’s the technical word that is at the moment the best approach to modify the genes of a person without putting so much a disorder. And getting the point that is to have the stem cell of the person corrected and ability given back to the patient, able to make the blood properly, that is: in the normal way.
I have to mention also another, a different treatment that is very new. It must be now approved in several countries. The name is again difficult because the name is luspatercept, the scientific name, that is a very sophisticated drug that is injected as a subcutaneous, very small injection by a syringe once every three weeks. So, very easy for the patient. And this drug is able in most of the patients to rise a bit the hemoglobin, that is to compensate in part the disease. It’s not a full cure, as may be potentially gene therapy, but it’s very interesting.
It sounds very promising. And that brings me to my last question: What is your advice for beta thalassemia patients on how to live with the condition and what should be paid attention to? For example, you mentioned physical activity earlier on and quality of life.
I have to give two different answers depending on the level of treatment. So, for the patient that has inadequate treatment because the country saw that it’s impossible to have perfect transfusion and iron chelation. The answer is to search any way to improve the treatment. And there are, these patients may have help from others because whether there is a problem like these hereditary, the community is ready to help. So, to search for help, but not just for the parents, but other people. There are so many associations of patients in any part of the world, and we have also one that collects them together. This is very useful to fight, to have better care.
The answer for the patient that has adequate treatment, so good treatment, is to think that, yes, it’s hard to do everything well and to adhere perfectly to the treatment. But the final result is to have the chance to have a really normal life with a normal brain, fully normal brain, and to have all the possibilities of the others. The attention in the daily life, there are many, but again are details that I can easily skip now.
Okay, now that sounds very promising, and that’s the end of our interview. Many thanks to you, Antonio, for taking the time and for joining us on the Waiting Room Podcast.
For this episode of Karger’s The Waiting Room Podcast on World IBD Day on May 19, we spoke with Jen Rose, who was diagnosed with inflammatory bowel disease (IBD) when she was 10 years old, 33 years ago. She is currently training to be a psychotherapeutic counsellor and offers emotional support to newly diagnosed IBD patients and their families. Furthermore, Jen is the author and illustrator of “Me (and IBD)”, a coloring journal that was designed to reach and support young people with IBD.
In the second episode of our two-part special we talk about the creation of “Me (and IBD)” and Jen’s plans for future updates and add-ons. In addition, we are looking at the aspect of mental health and what it takes to become a powerful patient.
You can find the first part of the interview here.
More information on IBD is freely available here:
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
And we’re going to talk about that something now because based on your research or dealing more with the topic of IBD, you also wrote and designed “Me (and IBD”, the coloring journal for young people with IBD. So, when did you have the idea to create such a resource and how would you describe the process of creating it?
Well, I had the idea, it didn’t start off with the idea of creating a coloring journal, actually. I started offering volunteer peer support to other families who had young patients or newly diagnosed young patients with IBD and to the patients as well. And that was, it surprised me how many people there were that wanted this support, and there wasn’t really anything available. My interest has always been around the impact of chronic disease on mental health. And I could see there were so many young people struggling with anxiety, struggling with low mood and struggling with a range of difficulties as a result of their IBD and just not having the right kind of people to talk to, the right support.
I started offering this peer support and I was doing that for maybe a year or so and having the most incredibly positive responses. But my frustration was that I was only one person doing this and restricted in time. There was only a limited number of people that I could cope with alongside having three children and working and all of those things. So, I started to think about whether there was a way that I could kind of condense what I was doing in my peer support into something that could be reproduced and distributed more widely. And it was, someone gave me an idea and said: “Oh, you know, you like drawing, you like art. Is there something that, could you use that to do something?” So, I set about my first pictures thinking: “Oh, maybe I could do the odd, like, page or something that people could print off and use.” And I got the bug and I realized that this was something that perhaps could become not just an individual sheet, but actually a book.
So, one of my children taught me how to use it, my first ever drawing software on an iPad. And I realized that in order to turn this into a coloring journal, I would need to know a little bit about design, know a little bit about how to use digital software, because I’d never touched any of that stuff before. In fact, I thought that technology was something way beyond me. So, I set about teaching myself how to use design software and at the same time I was doing all of the drawings and kind of planning, creating, researching content. And that took quite some time, and it was quite challenging [laughs]. And I’m still learning, but I’ve got to a place where I feel comfortable doing it now. And, and so the beginnings of the coloring journal happened.
Now, I took it to my son’s IBD team in Cambridge and said: “This is something I’ve been doing. What are your thoughts on it?” And they were so incredibly supportive and fascinated and interested and really super supportive all the way through and said: “Well, actually if you can make it into something that you think is ready for patients to look at, we would love to have copies to give to our patients so we can see what they think. And we’re very happy for you to kind of test it on them and see if it’s of benefit.” And so that’s where it started, really. So, I was printing copies off and sending them out to patients. And I’ve had the most amazing feedback.
That sounds great. That was going to be my next question. How has the feedback been like, but you just answered that [laughs]. And how widely is it being distributed as a resource? Has it been, like, has there been a major print run or is it being distributed to other hospitals, too?
The difficulty is that so far I’ve been doing this all myself, and it’s all self-funded because when you do something, well, certainly for me, I wanted to prove that it was of value first, which, I’ve done that now, and I wanted to kind of get it out to people. So that I could do that it’s been seen by endless health care professionals. It’s been used by endless patients and families. I think, so, Addenbrooke’s Hospital in Cambridge, there it’s now part of their standard care. But they tested with an, I can’t remember how many, somewhere between 50 and 100 patients initially. It’s now being used by hospitals in Scotland, funded by a charity, an IBD charity in Scotland. And now my difficulty is because, as I said, so far this has been self-funded, it’s about, all I want to do is to get these coloring channels to patients. And the best way, in my opinion, to do that is via the hospitals, because the hospital, the IBD teams know which patients need them and which patients would benefit from them.
And I’m in conversation with lots of hospitals and they’re all super positive and lots of them will say: “Oh my goodness, this is something we really want for our patients.” But the difficulty we have in the UK is funding. So, funding for anything within the NHS is, I would say, impossible. It’s close to impossible, and so the frustration is that that’s my barrier at the moment. So, I’m currently looking into ways that I can access funding or help the hospitals to be able to provide these coloring channels to their patients. Because I believe I’ve got endless anecdotal evidence and qualitative data to say that these things are making a difference.
As an example, I had a lovely email from one of our IBD psychologists who’ve been working with patients with the coloring channel, and she said that actually she thought she’s found that with her patient she needs to do far fewer introductory sessions because the young person is already coming to her with a knowledge of IBD and and her digestive system and that kind of thing. So, you know, it has positives not only for the patients but actually in terms of time when it comes to the health care teams, too.
I see. Now, you mentioned it being basically peer-reviewed by health care professionals as well as by patients as well, which is really important, I think, to include the patients right from the start. That brings me to my next question, which is why is trustworthy, reliable and understandable information important? I mean, most of the time people ask Doctor Google and what not, which has its pros, but also its cons. So, I guess that was very important to you to involve the health care professionals or psychologists and the patients too right from the start?
Yeah, absolutely. I think the problem is that with health information, there is a lot of health information available if you want to go searching for it online. But the problem is it’s so vast, there’s so much and it’s not always relevant. And specifically for young people as well or children that have been newly diagnosed, you could go online and you could learn about IBD and you could be utterly terrified. You know, there’s no way that the information is sort of filtered correctly. So, you could read, as a newly diagnosed patient, you could read that: “Oh my goodness, I’m going to have to have surgery.” “Oh, my goodness, this could happen.” “I could get cancer.”
There’s so many stories which are all valid stories, but they’re not for everybody. And also you don’t know if all the information is completely valid. There’ll be individual patients saying, talking about things on social media, for example, and it will be their experience of IBD. But that could be entirely different to another person’s experience of IBD. So, I think what I wanted to do with “Me (and IBD)” was to kind of gather together the most important, the basic information that you might need to know, a young person would need to know at diagnosis, to make sure it was absolutely accurate and delivered in a way that young patients would really engage with and understand and to have it all in one place. So, actually the young person could say: “Okay, I want to learn all about it.” And they wouldn’t have to go from website to website, social media platform to social media platform trying to find things out that they could kind of do it there.
And to get it in a kind of friendly, supportive, engaging way as well. I felt like that was really important. And it was by working with the health care teams themselves, by working with the IBD team at Addenbrooke’s Hospital. That’s how I ensured everything I’d collated was accurate, age appropriate and also up to date as well. And I’m in constant contact with the teams and I can, if something new happens or something changes, then I can make sure that my coloring journals always align with what they say and what, you know, the care they offer, too.
Very good. Are there any plans for updates or add-ons or even a second coloring book? You also mentioned mental health, which would probably be a huge subject.
Well, rather excitingly, just last week I had my first printed copies of my second or my supplementary journal, which is called “Looking after My Mind”. And it deals with mental health and chronic disease. And again, I was almost going to get up and show you [laughs], on a podcast, but it’s kind of trying to help young patients understand from early on about what it is to have a healthy mind and how sometimes or what you can do to ensure or to try to make sure you have a healthy mind and then think what can happen when things go a little bit wrong and you’re starting to struggle.
So, and then how having a chronic disease can make an impact on your healthy mind too. All done in a really kind of gentle, careful way so it doesn’t become too frightening, so it doesn’t kind of write the story for the young person so they start to feel that that’s how they should feel. But I know when I was struggling with the impact on my mental health, to have had something like that would have been super useful. So, that’s out now for testing, again at Addenbrooke’s Hospital in Cambridge. It’s been approved by a range of clinical psychologists and teams. It’s all ready to go, but I’m just waiting to start to get feedback on that one.
And when it comes to other coloring journals, I mean there’s just, there’s endless topics that I’d like to create content on. So, surgery, for example, on discussion with the health care teams, it was decided that there shouldn’t be too much about surgery in the first coloring journal, because it’s not always relevant to young patients, and it can be quite scary. But then there are plenty of patients who will need surgery. And I’ve had patients come to me and say: “Can you do a coloring journal all about surgery?” So there’s that. And then there’s looking at other people who are impacted by IBD. So, actually would there be adult patients who’ve been newly diagnosed who would want to have that kind of information, too? It would need to be presented slightly differently, but it’s still the same concept.
And then I’ve had families say to me: “Actually, my young person, their siblings, their brother or their sister have really struggled with their diagnosis. Is there some way you can adapt the coloring journal so that it’s relevant not just to the patient, but to siblings or to children of older, of adult patients who’ve been diagnosed.” And then looking even further forward, actually, I feel that this is, I really sort of strongly believe that this is something that doesn’t just, isn’t just relevant to IBD, that actually there are endless chronic diseases where young patients can be diagnosed and actually this could be translated into whichever that disease might be. Again, this is very long-term stuff, and unfortunately it’s not something that I can, you know, I’m doing as much as I can, but I have a limit to my funds and I have a limit to my time [laughs]. And so it’s something that if I can, you know, obtain funding for in the future or I can get interest from people in the future, then it would be something I’d love to do.
Sounds great. We previously mentioned that shame and embarrassment and probably ensuing isolation and loss of control are major factors and on the other hand, probably staying positive or trying to stay positive and cope with a condition. Did you experience any stigma associated with IBD apart from feeling uncomfortable yourself?
Well, it’s so tricky because I was so good at hiding what was wrong with me because of the fear of stigma, the fear of what people might say or that I might be, people might think it was disgusting or I might be teased. So, for me, it was never really about that. I think the problem is IBD involves the things that most people don’t particularly like to talk about. You know, nobody particularly wants to talk about poo or toilets or, you know, that kind of thing. And so, even if the stigma is becoming less, I think that you perceive it still, because societies don’t talk about poo, societies don’t talk about toilets and that kind of thing. And so for me, for example, I was, this was 30-something years ago where it was even more so that you don’t talk about these kind of subjects. It’s embarrassing. We all know we all go to the toilet, but we don’t acknowledge it. We pretend that we don’t. And there’s still an element of that nowadays.
And quite often when I speak to young patients, the first time we talk, they’re so embarrassed that they, you know, “I’ve got many poo …” and they kind of, they’re so ashamed of it all. And actually when I start openly talking about my own poo and like without having to refer to it as stool or some other form of, some other medical terminology, it really surprises them, but it has a really positive effect, helping them to feel like they can talk about it more. And it does lessen the embarrassment and the shame. But again, I think probably, like I said, my greatest fear was having an accident and not getting to the toilet in time. And I think that’s something that so many young patients fear, understandably so. And that’s all about the, you know, it’s not pleasant, but it’s all about what people will think and how it will be perceived by their friends or their family. So, there’s still a lot of stigma going on there with bowel conditions, I suppose.
Definitely. I’ve got a general question for you. In your opinion, what does it entail to become a powerful patient?
So, this is one of my favorite things because in creating the coloring channel, actually one of the first things I thought was: Oh, I want to make it about a very positive thing. I want to make this a really positive thing. And I want it to be not about, “Oh, poor you!” I want it to be about encouraging young patients to be powerful themselves and: “Oh, okay, I’m going to call them”, being a powerful patient. And so, when I was thinking about what would a powerful patient be, it would be all the opposite to all the things I was as a young patient. So, it would be about engaging with your condition and learning about it and trying to understand why it’s happened or how it’s happened and what happens in your body when your body’s flaring or when your IBD is flaring.
It’s about understanding your treatments or having some kind of say in what treatments your are taking and then understanding why it’s important to take them correctly. It’s about paying attention to your body. And if something’s not okay, if something starts not to be right, knowing that you have to, it’s important that you say: “Okay, I need to speak to my health care team, I need to speak to my doctor.” And it’s okay to do that. It’s about feeling comfortable or feeling confident enough in appointments. If you’re not comfortable with something or you don’t understand something, to be able to ask questions and say: “Actually, now, I don’t know why I’ve got to do this” or “I don’t understand about this. Can you explain that?”
And I felt like: To encourage all of these things in in young children, children and young patients when they’re first diagnosed, actually it’s kind of the real sweet spot to catch them then, because if you encourage these young patients to be powerful patients, actually it becomes natural to them. It becomes normal to ask questions and be engaged and to look after themselves. And so you’re creating powerful adult patients of the future.
So, since this is an interview on IBD, what are your plans for World IBD Day on May 19? Or does that even play a role because basically every day could be IBD Day, even though you’re in remission? What are your plans for World IBD Day this year and how important do your regard awareness days as such? By the way, this year’s motto is “IBD has no age”, and even though you’re focusing on young patients, you also mentioned adult patients. So, it kind of fits nicely.
Yeah, it’s a really interesting one. So, when you ask what I’ll be doing for World IBD Day? So, I probably, virtually every day, if, in fact, definitely every day I’m working either with patients with IBD or I’m producing social media content about IBD. So, really World IBD Day doesn’t have a massive impact on what I do anyway. I’ll continue creating content, I’ll continue speaking to my young patients. It’s a little bit, it’s sort of difficult to say, really.
I think awareness days are important because it’s a way to kind of, for people that don’t know anything about IBD, they might catch something or see something that they didn’t know about and it might begin to help them want to learn to understand a little bit more. I think another reason that awareness days are quite important is actually it brings together the communities, the IBD communities. It’s kind of like a place where everyone feels; “Maybe I can share my story today, and then other people will see that and share their stories.”
And it kind of just gives patients who maybe aren’t confident about talking about their condition a platform to do that, which is, in my opinion, super important. But actually when it comes to awareness for IBD, for me it’s an everyday thing, and that’s how it should be. It’s not about one specific day.
I completely understand. And that was actually the last question of our interview. Thank you very much for your answers. I’ve learned a lot, to be honest, quite a lot. And I really enjoyed your coloring journal. I can only recommend it and I’m looking forward to future updates. Thank you, Jen.
Alex, thank you so much. It’s been a real pleasure. Thank you.
For this episode of Karger’s The Waiting Room Podcast on World IBD Day on May 19, we spoke with Jen Rose, who was diagnosed with inflammatory bowel disease (IBD) when she was 10 years old, 33 years ago. She is currently training to be a psychotherapeutic counsellor and offers emotional support to newly diagnosed IBD patients and their families. Furthermore, Jen is the author and illustrator of “Me (and IBD)”, a coloring journal that was designed to reach and support young people with IBD.
In the first episode of our two-part special we focus on what IBD is, what to look out for in terms of symptoms and diagnosis, and what it is like to live with the condition based on Jen’s patient journey.
The second part of the interview will be published on May 18, 2023.
More information on IBD is freely available here:
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Jen, and welcome to The Waiting Room podcast.
Hi Alex, thank you so much. I’m really excited to be here.
This question might sound like a total no-brainer to you, but in short, what is IBD and why is it different for everyone?
Okay, so IBD actually stands for inflammatory bowel disease, and it’s a chronic condition, which means it’s something that you have for the rest of your life. It affects your digestive system, so it can be anywhere from your mouth to your bottom. And it’s an immune-mediated disease, which means that your immune system, which is usually protecting you and looking after you, actually starts to attack healthy cells in your digestive system. And that causes inflammation. There’s two common forms of IBD that most people will have heard of or lots of people will have heard of, and that’s Crohn’s disease and ulcerative colitis. There’s other, rarer forms of IBD, it’s usually called microscopic colitis.
So, the difference between the types of IBD, essentially it’s about the location of your inflammation. With ulcerative colitis, inflammation only happens within the colon or the large bowel, whereas with Crohn’s disease the inflammation can be anywhere, like I said, from your mouth to your bottom. Also, with ulcerative colitis, it’s only the inner lining of the bowel that’s affected by inflammation, whereas with Crohn’s disease that inflammation can go deeper. Sometimes it’s actually quite hard to tell whether you have, which specific type of IBD you have. And if that’s the case, you might be diagnosed with something called IBDU, which is inflammatory bowel disease unclassified, people actually have that, and it might be that further down the line they realize it’s one condition or the other, but sometimes not.
The symptoms of IBD are, there’s a huge range of symptoms, but they’re quite similar in that you will often have diarrhea or constipation. Lots of people have pain, tummy pain and or pain anywhere within their digestive system, and often there’ll be blood or mucus within the poo and also endless toilet trips, often with urgency as well. So, it can be really quite impactful on your life. And then there’s other things as well. Lots of people can lose appetite, lose weight, it can affect your growth, and fatigue is a really big symptom of IBD. There are other parts of the body that can be impacted by IBD, too. And also there can be complications. So, inflammation that’s not effectively treated can then cause problems which can even lead to surgery.
IBD is a relapsing-remitting disease, which means it comes in kind of flare-ups and periods of remission. So, it could well be that you’re not feeling, you’re not having symptoms all the time, but you never quite know when you might start having symptoms. It can be very unpredictable. But yeah, as you can imagine, it has a huge impact on daily life.
The reason it can be different for everybody: Well, as you’ve just heard, there’s a huge range of symptoms. So, lots of people have few symptoms or sometimes no symptoms, but lots of people have a range of symptoms and it can just be, you can kind of pick and choose from any of those. It’s also about how the patient copes with those symptoms, too. Somebody who works from home and has access to a toilet, an easy access to a toilet, might find it easier to cope with those symptoms than someone that works away from a toilet or that goes to school and that kind of thing. So again, personal situation is really important.
There’s also a range of treatments available. And again, the treatments are, there’s no guarantee that they work for everybody. So, different people, different patients react differently to different treatments. Some work for some, some completely have no effect for others. And so there’s never any, it’s never any sort of certainty. And then again, with the relapsing-remitting nature of IBD, some people will flare constantly or regularly. Other people will flare once every few years. There’s just no predicting it. So, it can be incredibly different for every patient.
I see. Many thanks for this great overview. So, what did or what still does your own patient journey look like? That is, to which extend did you understand your condition as a child and how did you come to terms with it in the course of time?
Gosh, that’s quite a big question. I was ten years old when I was diagnosed with ulcerative colitis. That’s quite a lot of years ago now, about 33 years ago. So, I struggle to remember some of the kind of leading up to the diagnosis. But I know at the time the diagnoses of ulcerative colitis in children so young were unusual. So, there was no there was no kind of pediatric-based care teams available. It was just, I joined in with the adults and was treated there. I remember when I first was going to the toilet more often and I would be, it would always be urgent as well. And then I would end up spending long periods of time in the toilet. And this was because I know now my ulcerative colitis affects my rectum and the last 30 centimeters of my bowel, that’s where my inflammation is. And that can kind of have a really, it has a really sort of physical, quick effect on me when I’m flaring so I’ll need to go to the toilet constantly.
There’ll be quite a bit of blood in my stool and I get lots of kind of trapped wind, and it’s just really, really uncomfortable and the urgency as well is a real issue because the inflammation is around or where all the nerves are packed into your rectum. And so my brain is thinking I need the toilet all the time and even when I don’t. So, anyway, I remember being given treatment for my IBD. Actually, at the time I was told I have mild to moderate disease and actually I was told by the doctors: “You’re really fortunate. You know, you’re actually, you’re very lucky because it could be much worse. You could be really poorly.” And I remember thinking at the time, as a ten-year-old, thinking: “Oh, well, he’s a doctor and he knows what he’s talking about. So, absolutely, I’m fortunate. I’m lucky.” And, you know, I can’t make a fuss about this, even though I didn’t feel particularly okay.
I didn’t feel like my disease was mild to moderate and I was having some, you know, incredibly challenging symptoms. But that kind of set the scene for my whole disease journey, I suppose, in that I felt I had nothing to make a fuss about and I couldn’t, you know, I didn’t want to keep bothering people with it, and I didn’t feel like I was justified to go to the doctor and say: “I’m not feeling well again and I’m going to the toilet 20 or 30 times a day.” And it really impacted on me because growing up as a teenager, as you can imagine, there’s lots and lots of challenges anyway but adding the really challenging symptoms that I was having into the mix, plus this feeling of almost guilt around, I suppose it sounds crazy, but almost guilt about not being more sick than I was. Yeah. Made it really, really difficult.
So, my disease has always flared regularly. I’ll be well for a little for a period of time, and then it will, I’ll flare again. And then I’ll take some treatment and it will go for a little while and it will come back. And I just kind of, rather than seeking something that would give me a more permanent remission, I just accepted that that was how it was. I wasn’t very good at reporting to the doctors that when I was having symptoms, partially because of that guilt, but also because I hated taking steroids, absolutely hated the effect steroids had on me, on my mood. And I put weight on and my face swelled up. And as a 14-, 15-, 16-year-old girl, that’s not ideal. So, and this kind of became my normal really. I didn’t really talk to anyone about my symptoms. I didn’t understand really what was going on. I just knew that I was having these symptoms. I would hide it as best I could. I would pretend I was fine.
None of my friends knew that I had anything wrong, but it got really tricky because, you know, sitting in the lesson in school, going to the toilet once the teachers will accept, going twice they start to get ratty, going three or four times, which quite often I had to do, it would be really tricky. So, I kind of ended up being very, quite an anxious and isolated person. I lived very much in my own head, sort of trying to cope with everything and trying to remember or trying to figure out the best way to keep everything secret, always planning ahead and thinking: “Can I do this? Because if there’s no toilet, what am I going to do? Can I go on these trips? Can I go? I don’t really want to sleep over at people’s houses in case I have to use the toilet in the night and I don’t really want to take any risks because those risks might involve something horrendous and embarrassing happening.”
You know, my greatest fear was that someone would find out I had a disease that made me poo a lot, or, you know, that meant that I might have an accident in public or something like that. That carried on throughout my teenage years. And I kind of, I got used to my new normal. And to me that was, there was nothing to be done about it. I didn’t know there was anything that I could do about it. And I just lived my life really and just had periods of time where I didn’t do, I just tried to stay at home as much as possible and just coped with it, really. And it wasn’t until quite some time later that I realized I needed to do something about that. And the time came.
Hmm. Being diagnosed with a chronic disease like IBD at a young age, just like yourself, I can imagine that that can be the start of a very long journey, or what is often called the diagnostic odyssey. If there is a diagnosis at all. I mean, I wouldn’t consider yourself lucky, as you said, because it probably didn’t feel like being very lucky. But how did you experience that diagnostic journey?
Again, as I said, I struggle to remember a lot of it. It’s a long, long time ago. I remember it all being incredibly intimidating and frightening. And I remember having to have tests done, tests that as a child you never expect you’re going or you never want to have done. And feeling really, like, horrified by the fact that doctors were wanting to look at my bottom, put things into my bottom, having to have horrible treatments that made me, like the treatments before I had endoscopy. So, that made me go to the toilet loads and then not being able to eat and all of these things, as a as a ten-year-old, you just don’t really understand or I certainly didn’t understand.
I remember knowing that I was having these symptoms, but not understanding why, not really being brave enough to ask anybody. You know, poo wasn’t really a topic of conversation in our house. It was something that you said with hushed tones and that it was all a bit shameful and embarrassing. And doctors, for a ten-year-old little girl, sort of speaking to a consultant, it just wasn’t the thing. They would always direct their conversation at my mom or my dad. And so I would sit there quietly and just do as I was told.
When it comes to the diagnosis journey for other people. For lots of other young people that I’ve spoken to quite often the diagnosis itself is quite challenging. So, it might be that the young person has symptoms for a long period of time that’s either misdiagnosed or they’ve just learned to cope with and they don’t realize it’s actually the sign of something that needs treatment. And so that in itself can be a pretty long, long journey itself. And then getting that diagnosis too, there’s no one – it’s quite tricky to diagnose IBD. The symptoms are quite similar to lots of other issues and conditions, and so getting the right tests and treatments done aren’t always easy.
And when that finally does happen, it’s about finding a treatment that works. And that’s all part of the journey as well. And again, as I said before, there’s treatments available, but no, there’s no guarantee that any of those treatments will be the right treatment. So, it’s about finding those treatments, and then it becomes about adapting and changing your day-to-day life to fit around when you’re not well and when you are well and when you’re having symptoms and when you’re not. And then for me and for lots of young people that I speak to, it’s the learning to cope with the, or it’s the impact on your mental health of having to cope with a chronic disease.
And we’ll come to the mental health aspect later on. But also in this regard, when living with IBD, which role do diet, physical activity and lifestyle choices play?
I might have to swerve this one a little bit because it’s a really, really tricky question and it’s something that so many patients feel quite passionately about. But there’s very little research. There’s no evidence that specifically says that diet has this impact on your IBD, that you should eat this and you shouldn’t eat that. But there’s a great deal of opinion and there’s also a great deal of, there’s a lot of patients who will find that certain things may affect their symptoms or their IBD or, and again, nothing, there’s nothing that fits everybody. And so, whereas I don’t find that diet impacts my IBD at all, I know people where it really does. So, it’s a really tricky subject to answer.
The way I tend to look at it, especially when I’m talking to the young people I support, is actually if you think about things like physical activity, diet and all those things as something that is really important for everybody, whether you have IBD or not, and actually that by looking after yourself in that way and doing the best thing you can for your body, you’re giving it then the best chance, it’s in the best position to then start coping with the additional challenges that IBD gives you. It’s also something, for me it’s about control as well, because I think when you have IBD, you can feel very much out of control.
Your body doesn’t feel like it’s in your control, and then you’re having tests that leave you feeling a bit out of control and you’re not really in control of the treatments that you can take as well. So, I find that can be quite impactful on mental health as well. And if there are things you can control, so you can choose to eat what you eat and to eat healthily as best you can, you can choose to try and get exercise if your symptoms will allow you to, suddenly you are having a little bit of agency in your own wellbeing. I think that’s really important.
I see. Now, one of your own sons was diagnosed with IBD as well. That must have felt quite weird on the one hand, but on the other hand you probably knew better what to look out for and probably approach this whole subject differently than how it was approached doing your own childhood.
Absolutely, yes. So, nearly six years ago now, one of my children, my middle one, my middle son was starting to get sick and he started to have tummy pain and he started to stop or he didn’t want to eat very much. And he got thinner and paler and just had absolutely no energy at all. For a little while, even I didn’t recognize what was going on with him, but it didn’t take long. And then, I think, he said to me one day: “Mummy, I’ve got a bubbly tummy.” And he started going to the toilet more often. And then I knew and it was, for me it was quite clear what was going on and it was heartbreaking. It was really heartbreaking.
My son’s diagnosis was a really quick process because I was in the position where I had enough knowledge that I could say: “Okay, I think I know what this is. Straight to the doctors!” And my doctor, who is also his doctor, who I’ve had for quite some time now, he’s always been very supportive and understands I know my symptoms and my body quite well now. And he said: “Well, if you think that’s what it is, then let’s go with that.” And he was sent for tests, and his diagnosis journey was really quick. It was all so very different. There’s pediatric IBD teams all over the country now and he was sent to an amazing pediatric IBD team in Cambridge who have cared for him just wonderfully right from the start and cared for me as his family as well.
Nowadays, it’s very much more focused on the patient and helping the patient understand and engaging them with their own condition, which is really important. I think the biggest impact of my son’s diagnosis was actually, interestingly, on me, in my understanding of the disease as well when I realized that he had IBD. He actually has Crohn’s disease. So, obviously there’s differences there, but it’s kind of under the same umbrella term. And I realized that my lack of understanding of IBD and my lack of willingness to engage with IBD throughout my life, that had to change because the last thing I wanted was for him to struggle the way that I had throughout his life with IBD.
So, I made it my business to start learning all there was to learn about IBD and to start talking about my condition, which is something I’d never done before, to start engaging with other patients who had IBD, which I’d never done before, really, and to really engage with the health care team as well and make sure that he didn’t feel that he had to keep it to himself about his condition, that he wasn’t embarrassed by it, and that he felt he could always come and speak to me or his health care teams if he needed to. And so, actually, our trips up to the hospital, which are significant, became a really fun experience and we always made sure we had a really nice lunch when we were there.
And for him, despite the fact that it took a little while to find the right medications for him and the treatments that he has are, you know, something that took a little while for him to become comfortable with. He has to self-inject, which kids don’t necessarily, aren’t particularly keen on doing, that kind of thing. Actually, it’s been a really positive experience for him. And once he found the treatment that worked for him, he’s been in remission ever since. He’s now been in remission for about four, four and a half years, and he is really well and he’s grown and he’s obviously twice the size he was, well, he is ten now.
And actually, I check in with him sometimes about how he’s feeling and how he feels about his IBD. And he says: “Oh, I don’t even think about it to be honest, I hardly know I’ve got it, really.” And to me that’s that speaks to me so well, because I certainly wasn’t in that position when I was 16 years old and coping with my IBD. But actually all of that happening has had such a massively positive effect on me too, on me learning about my disease and on me starting to kind of try to focus on, understand and then begin to heal all of the traumas that I’d gone through, all of the ways I’d learned in order to cope with those traumas, in order to cope with the symptoms and so on.
And the personality that I built up around that. So, the anxiety and the sort of fear of taking risks and all of those things. And then after that it wasn’t long until I decided that supporting my son was amazing and I felt like it was a really positive thing. And actually, I realized that there were lots and lots of other young people out there who maybe didn’t have that support or whose families didn’t have that kind of support, who may have been struggling like I did. And that’s when I decided I needed to do something.
To be continued …
For this episode of Karger’s The Waiting Room Podcast on Colorectal Cancer Awareness Month in March, we spoke with Stephen Rowley. He is a colorectal cancer survivor, and currently serves as Patient Advisor at Digestive Cancers Europe. Stephen also helps to organize cancer rehabilitation services and founded the national Bowel Cancer Support Group UK. Furthermore, apart from having played a role in the development of the internet and internet security, he is an interdisciplinary scientist, active musician, visual artist and keen sailor.
In our interview we focus on the aspects of prevention and screening, stigmatization, and cancer rehabilitation regarding colorectal cancer.
This is the second part of our two-part special on colorectal cancer. You can find the first part here.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
During the answer to my first question you mentioned your treatment regimen. Do you know of any new treatment modalities or approaches that are currently being implemented or which are on the horizon?
Yes, there’s always a lot going on. Colorectal cancer doesn’t get the attention that breast cancer gets. I mean, when you look at the difference in research expenditure on breast cancer, it’s many times any other cancer or all the other cancers put together. But, you know, colon cancer is the second biggest cancer killer in the UK. And it’s an area of research and of interest to pharmaceutical companies and research organizations. So, there is a lot of research going on all the time. And some of these are coming through as treatments.
Just recently there’s been the results of a trial which showed that for many colon cancers, it would be better to treat with the chemotherapy before the surgery. Traditionally, you have surgery, recover from that and then you have the chemotherapy. They saw better outcomes by having the chemotherapy first, because from point of diagnosis to your surgery, which might be a month, six weeks later, and then the recovery period, you might be talking about three months before you start chemotherapy, which if a small amount has escaped, not visible on the CT scan or anything like that, but it’s escaped, is already working in your liver or somewhere like that, then it’s had that time to grow three months.
Whereas if you go straight in with chemotherapy and reduce the risk of any escaped material before the surgery, you have better outcomes. But that said, the downside of that is that there will be many people who didn’t need chemotherapy who were then overtreated, and overtreatment is a big issue. You know, I had 12 cycles of FOLFOX. Who knows if the first 6 trial cycles did the job and the rest of the 6 just gave me the debilitating side effects.
But there are areas where we know that the treatments aren’t so effective. So, particularly with some biomarkers like KRAS and BRAF, these biomarkers are to do with genetic mutations in the genome of the patient. They reduce their ability to deal with cancer within their own cells, so they reduce the cell’s own cancer immunity systems, and they’ve been stubbornly hard to address in terms of treatments. But now the immunotherapy treatments, together with combined therapies, immune- and chemotherapy, are proving very effective, and significant changes have happened in rectal cancer. One particular mode, one particular type of rectal cancer, they’re getting 100% complete response by delivering this particular combination, and it completely destroys the cancer. No need for surgery; highly effective treatment.
And so that gives us hope that there’s many other immunotherapies coming down the line. Drug companies are busy at all that, and that’s changing the picture rapidly. There are still other, significant portions of the population who have biomarkers mutations which are not really showing any response. Fine if you are a low stage 3; the chemotherapy will probably deal with it. But if you are stage 4, with those biomarkers, there’s very little evidence that the chemotherapies will be effective.
I see. And which role can cancer rehabilitation play also based on your own experience after the treatment?
Well, there is a story [laughs]. So, after my treatment, I wasn’t offered any rehabilitation or anything and “Just get on and recover”. And it was slow, and one of the things I’ve loved in my life is sailing. And late in the summer, my brother took me for a sailing trip on a yacht, and we sailed along one of our favorite bits of the coast, the south coast of England. A sunny day, and I really enjoyed, there, leaning, looking out, at the rail with my hand on the tiller and I was just happy. Perfect weather. And I was on the tiller for about an hour, sitting in the same position. And at the end of the day, my shoulder hurt, and a week later it still hurt. And two months later, no sign of any improvement. So, I went to the physiotherapist and the physiotherapist: “Why aren’t you on the cancer rehabilitation course?” And I said: “Nobody told me about it”, and basically nobody told me about it because nobody at the hospital knew about it. So I got myself referred on to it and went along, and I was the only person in. I had a rehabilitation instructor and me one-on-one for about two months before anybody else turned up.
So, I helped organize to get them organized to make this rehabilitation program visible on the Internet so that the health professionals could find it, and then we could promote it to health professionals, and patients would find it and self-refer. There’s no reason why they need to go through a referral process. And then that helped to expand the program. And that class I go to now regularly has about 30 people going to it weekly. It’s a weekly circuit. If you go to the gym you might be familiar with circuits. Well, these are circuits designed for rehabilitation, and the instructors are trained through a program called CanRehab. So that saved me, really, because what I hadn’t realized is that a significant impact of chemotherapy is cachexia.
Now, cachexia is muscle loss, and you lose muscle fibers basically because certain chemotherapies affect the, it’s called peripheral neuropathy, and it kills the nerve endings. Most people recognize this through tingling in the fingers and reduced sensitivity to touch, and that’s your sensory fibers, but it also affects the motor fibers as well. Your muscles are basically, if they don’t get a signal, that fiber fades away and you lose muscle. And that’s what happened to my shoulder, that I was doing an ordinary job that I would have done the year before without any problem, that I was doing it with only half the muscle and strained those muscles.
So, what’s been shown is that in terms of rehabilitation, the most important thing is resistance exercises to improve your remaining muscle fibers so that you can get them healthier, stronger and help take up the load to replace the ones that have been lost. You can’t grow new fibers. You can just optimize the ones you’ve got. So, and then COVID came and that wiped out the program, really. A few ones locally continued on Zoom, but a lot of them disappeared. And now we’re in the stage of rebuilding that. And, of course, all the funding went away as well. So, now we’re looking for ways of making it self-funding and the like.
I believe everybody who’s been diagnosed with cancer should have access to rehabilitation because it’s not just about cachexia. You might not have cachexia, but chemotherapy or even just the surgery has an effect on your whole system, and you need to rebuild confidence as much as anything. Getting out there and physically being more confident, quite apart from the other significant effect, is that a cancer rehabilitation class is a social event and you’re with other people who get it, who understand. And that can be an amazing thing for anybody anyway in that situation. So, this helps your mental health as well as your physical health.
I suspect there’s quite a bit of loneliness attached to such a diagnosis apart from being supported by your family. But getting together and meeting, well, equal-minded or equally affected people definitely helps, I guess.
Yeah, and cancer disproportionately affects older people. Quite often they’re single because they’re of an age where their life partner has died. And so, they’re often single. They’re coping with it on their own. And this gives them a community, a community of friends. A lot of our sessions, we’ll go for coffee afterwards, and we might be at coffee for longer than we are in the rehabilitation session [laughs]. But it really helps, and people get help, lifts going to treatment or things like that because getting involved in rehab, I very quickly discovered about prehab. And back in those days, prehab really wasn’t much talked about, but there was increasing evidence that, as soon as you were diagnosed, if you go on an exercise regime, an improved eating diet regime, it makes you fitter. As one consultant put it to me, it’s a no-brainer. The outcome of a program of treatment is often dependent upon the fitness of the person going into it; that if your health is poor, then you might not survive the treatment.
So, there’s real benefit from a medical perspective in being fitter in that you’re more likely to find treatment. But also people who undergo prehab recover more quickly and recover to a higher level than those who don’t. That’s a significant effect longer-term because chemotherapy and immunotherapy are very damaging. But I think the biggest area of benefit is in the psychological area. The moment you’re diagnosed with cancer, for most people, you are handing yourself over, you lose control completely. You hand yourself over to the medical professionals who say: “You’ve got cancer. You know, go home, get on with your life until we send you the information for your operation or your treatments begin.” And a lot of people, anxiety levels go through the roof, and they’re very fearful. There is nothing positive, and there’s nothing they can do. You know, they are entirely dependent on the process of the of the medical system, health care system.
But imagine a different situation where: “You’ve got cancer. We’re going to put together a treatment plan for you. This is what you can be doing that’s going to help you respond to the treatment better, improve your chances of recovery, lower your risk of recurrence.” You know, that’s something you can do. And so prehab programs typically involve exercise, getting you as fit as possible; diet, particularly reducing weight for people who are overweight, but a healthy diet as well; and sleep. Understanding how best to get a good night’s sleep because if you’re not sleeping well, then that affects your physical health significantly, but also the issues around anxiety and things which grow in the night.
And then your mental health generally. So, if you’re managing your thoughts; because a cancer diagnosis, for a lot of people, they think cancer is a death sentence, but actually isn’t. Most people survive these days. You’ve got to be a lot more realistic and be able to handle that and also know when and where to get help, if it’s affecting you. So, prehab is really, really a game changer, I think for people, it would have a significant effect. But again, it’s having difficulty getting rolled out and the consultants to know that it’s there. We’ve got a problem in a lot of the countries that people don’t get referred onto it because the consultants don’t realize the benefit it might have.
I see. And do people get the type of information from the support group you set up? The online support group, for example?
Yeah, absolutely. We really encourage people to seek prehab and rehab. Yes. And I believe that they should actually be the same thing. When somebody is diagnosed with cancer, they usually fit in well. There’s no reason why they can’t just go along to the existing rehab classes for the fitness side of things. So, but yes, they do need more advice. They need all that mental health and diet advice. It’s a very important thing for them to get that information. And typically they’re not getting it. So, there are online resources for prehab, and so we direct people to those. And there is one prehab group which will deliver those things online, one-to-one service. Those things are available. And I believe everybody should be offered prehab. Cancer diagnosis; right, you can help yourself. Start prehab now. Yeah. Start prehab the moment you leave this room.
Okay. Definitely makes sense. This actually leads to leads me to my last question of the interview, which is what are your plans for this year’s Colorectal Cancer Awareness Month or maybe what are Digestive Cancer Europe’s plans, since you’re involved with them, too.
Right. So, Digestive Cancers Europe, I guess they do have plans [laughs], but I should really get you the information on those because there’s basically a steps campaign that you do your steps for colon cancer and step up for colon cancer/colorectal cancer. But it’s different in the UK because Colorectal Cancer Awareness Month falls in March, and in the UK that is the month that Macmillan have their cancer support campaign. And nobody wants to be trying to pitch a fundraiser against Macmillan, you know [laughs]. And so, in the UK, we have Bowel Cancer Awareness Month in April, and so the Bowel Cancer UK run quite a big campaign during that period, which means that I usually get to do awareness speaking for Bowel Cancer UK, for different groups, and during that month I’m doing a lot of that.
But also, what we’re doing in my, so I set up a group for the Bowel Cancer Support Group UK and that is entirely people who’ve been affected by bowel cancer/colorectal cancer, and what we really like to do is just raise awareness through whatever means we do. And because we’re a social media-based thing, this is more about finding things that we can all share. We’ve got three and a half thousand members; they can share stuff and so we can develop messages that will get out there on cancer awareness. And definitely a big theme for us this year will be increasing uptake of screening. As screening age gets lower and lower, you just need to bring that on for people who’ve never really considered it. If you’re in your early fifties, you’ve never heard of it.
So, raising that awareness, but also there are quite a number of charities which we will be pointing to do for fundraising and the like. I’m involved in several cancer charities working on bowel cancer/colorectal cancer. Our main thing will be to increase awareness and fundraising through social media. And I know there’s this one coming up just at the end of this week; a woman wants to do something and she’s organized a concert, and there’ll be lot more of that kind of things. Fundraisers like that. I usually grow tomatoes, so I’m setting up my tomato seedlings over the next couple of weeks, and in April I will be selling tomato seedlings and in previous years I’ve usually raised about £2,000. So it’s an important thing.
During COVID, the cancer charities, a lot of charities, but cancer charities in particular, their income plummeted and they were absolutely decimated. They had to lose staff. I think, Bowel Cancer UK, their income dropped 75%, so that vastly changes what they can do. But gradually things are coming back up again now. We can do what we can to support them.
Which is good to hear. Excellent. Many thanks, Steve, for your time and for the interview. It’s been really enjoyable. I’ve learned quite a lot, and yeah, thank you.
Well, thank you. It’s good to have the opportunity to raise awareness.
For this episode of Karger’s The Waiting Room Podcast on Colorectal Cancer Awareness Month in March, we spoke with Stephen Rowley. He is a colorectal cancer survivor, and currently serves as Patient Advisor at Digestive Cancers Europe. Stephen also helps to organize cancer rehabilitation services and founded the national Bowel Cancer Support Group UK. Furthermore, apart from having played a role in the development of the internet and internet security, he is an interdisciplinary scientist, active musician, visual artist and keen sailor.
In our interview we focus on the aspects of prevention and screening, stigmatization, and cancer rehabilitation regarding colorectal cancer.
This is the first part of our two-part special on colorectal cancer. The second part can be found here.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
Hello Steve, and welcome to the Waiting Room podcast. First of all, please tell us a bit about yourself and your patient journey in terms of colorectal cancer.
Well, yes, I was diagnosed when I was 60. In fact, I was diagnosed the week before I was 60, with colon cancer, and that was in 2015. It came out of the blue, didn’t know anybody with cancer, let alone colon cancer. And I didn’t know there was any problem in the family or anything like that. And I was diagnosed stage, well, after surgery they staged it, stage 3c. So that was quite extensive local spread in the lymph nodes and also in the blood vessels. And then I had chemotherapy, 12 cycles of FOLFOX, and then you’re left to get on with trying to work out how to live with that. So, I felt perfectly fit and well when I actually had the cancer. But after the treatment, you know, you’re pretty wrecked. And so, yes, so that was me.
But my brother Damon, I had at the time three brothers, and each of them then, they were in their fifties. And I said to each of them: “You know, get checked!”, and my brother Damon had symptoms, but it took two years to convince the doctor to refer him. And when they did, he was stage 4 and died within six months. So, there was a big issue there. The doctor wouldn’t refer him because he was too young. He was under 60, and 60 was the start of the screening age. So, it couldn’t be cancer, could it? That got me very interested in it. And since then I’ve discovered that we have a family propensity. There’s a genetic element to it, but we’re not Lynch syndrome, so there isn’t a test for it. But the wider family knows about it.
I had no idea my grandmother died of it, or her sister or my aunt, because that generation, those generations, they just didn’t talk about it, you know. They wouldn’t have talked about anything like that. We only found out by actually getting the death certificates, and there you get the detail. So, that’s how I ended up getting very involved in understanding it. Once I understood it, then I got more involved in the actual, various methods to help improve the situation.
Speaking of which, colorectal cancer is a topic that runs in my family too, or rather my wife’s family. So, it’s close to my heart. And you mentioned getting more involved. Could you please us tell us a bit more about your task as the patient advisor for Digestive Cancers Europe, for example?
Okay. So, I’m a member of the Patient Advisory Council, the PAC. We advise the Board of Digestive Cancers Europe, which is very patient-focused and campaigns really at all levels, but particularly at government levels, to improve the lot for people with colon cancer or to help prevent or to improve screening. DiCE, or Digestive Cancers Europe, does a lot of advocating on cancer at all levels and particularly government level to improve the lot for people affected by colon cancer. So, that’s encouraging countries to implement screening programs and to make sure people have the best kind of access to the treatments.
It’s a very broad scope that Digestive Cancers works on. And also, the organization is an interface between companies and patients. So, often we get requests coming in to, you know, looking for people who will be able to participate in drug trials and the like, design of trials, which I’ve been doing, and surveys. Yeah, all kinds of stuff. It’s a very broad remit. We get involved not just in advising the board, you know, we get involved in it in a lot of different ways. And there’s masterclasses that DiCE runs and also summits; an annual summit on screening, for instance.
I’ve come across a statement by the International Agency for Research on Cancer that they estimate that the global burden of colorectal cancer will increase by 56% between 2020 and 2040. What are your thoughts on this?
I think it’s an underestimate. Colorectal cancer is primarily an aging disease. So, it happens because our DNA gets older. And as you get older, your DNA gets older, your cancer protection systems in your cells get older as well. And you just get more and more risk of cancer as the age goes up. When you look at the curve, it’s a classic exponential growth. It starts off quite slow and it curves up and then it ramps up and it, currently in the UK, peaks around 75 and then it drops off. That’s because there’s less people, they die of other things. But if we lived to 140, we’d all get it.
It happens because the lining of the gut is the part of the body which is replacing itself most frequently and most quickly. It replaces itself every six days. And that means there’s more cell replication going on there than anywhere else in the body. That’s why there’s more risk of errors in copying. And if you’ve got any problems with, you know, short telomeres in your genes, you’ve got more risk of mutations that will cause cancer.
So, worldwide, particularly in developing countries, as their health systems improve and they get older, you know, their age profile, demographic in the country increases and people live longer, then more people will get colorectal cancer. You know, it’s a simple thing. Sub-Saharan Africa, and they don’t know what’s hit them yet. A lot of the countries don’t have much in the way of cancer programs and no screening. But that is because the people generally die younger, and that’s going to change.
Please tell us more about the importance of screening and especially cancer screening programs.
Well, in the UK, if you go back 20, 25 years, most people who were diagnosed with colon cancer died of colon cancer because they would be diagnosed at the stage 4. It’s already advanced because they would go to the doctor with symptoms. And if you’re getting the symptoms, probably it’s already quite late-stage. It certainly was with me. I had symptoms, and I was in stage 3. Stage 3c. The most common colon cancers are very slow-growing. The doctor said, I’ve probably had my, my cancer probably started at least ten years before and maybe up to 15 years before. And it takes a long time. It grows as a polyp inside the gut and it doesn’t spread until it gets to a particular size and stage and whilst it’s growing, it’s giving no symptoms whatsoever.
And so screening is vital to be able to pick up colon cancers at that early stage, and then something can be done about them and you stand a good chance of recovery. So, the survival rate was less than, I think, less than 10%. And then in the noughties, screening was introduced using the fecal occult blood test. And then more recently, the FIT test, which is the fecal immunochemical test, which is much more specific and sensitive. But, it’s turned it around completely. Now your survival rate is getting on for 70%, and that’s entirely down to screening. Screening picks it up earlier than you would pick up any symptoms. It’s very important. If you look at other cancers like pancreatic cancer, the symptoms are very difficult to pick up there. And so, pancreatic cancer has a notoriously low survival rate.
In your role as a patient adviser, did you speak to a lot of people that didn’t get their cancer screening done due to COVID and being afraid to go to a GP or to a clinic?
COVID had a massive impact, and I started a cancer support group for colorectal cancer. Just before COVID, the membership of this group was very low, maybe 30 members, 40 members, something like this, until October, oh no, September. And suddenly it rocketed up when the colonoscopies started happening again. And we had a massive peak, which went very high and has now settled to a steady climb of 50 new members a week.
So, there was a big backlog there. And undoubtedly people, because of the issue during COVID, they will have had late diagnoses. Yeah, and that’s the issue. There were very sad cases of people who, because of COVID, couldn’t get the treatments they needed. And they progressed from stage 3 to stage 4 and died as a result. And so, COVID did have an impact on that, yes.
Among the risk factors for colorectal cancers are, for example, obesity, tobacco smoking and alcohol consumption. Which role does stigmatization play in this regard? Or did you encounter any kind of stigmatization?
I think generally, well, it is quite interesting. So, obviously we see different cultures. There are some cultures which will quite openly talk about bowels and other cultures which just will not. And for instance, certain parts of the Asian community in the UK, I will rarely hear from the ladies in that community with the disease, but I will hear from their sons talking on their behalf. And they tell me that their mothers would not go to the doctor. They wouldn’t go to the doctor about anything below the waist.
Because they feel ashamed.
Ashamed. And it’s to do with that culture, their age. Younger women in that same community – no problem. And there has been some work done on this. The projects I’m working on are really to do with: “How do we increase screening uptake in those communities?” And there’s quite a lot of issues in some African communities around this. So, it’s a real problem and something they’ve got to address as the age demographic profile changes in those countries. They’ve got to get more aware, you know, so they’ve got to address that on quite a scale.
What else can or rather needs to be done? This is, what are the unmet needs of those living with colorectal cancer? For example, what about healthy lifestyle habits and physical activity?
Right. I’m just working on some material to do with screening policy in the UK. And I was reviewing one of the documents and I thought, this document is looking at how we implement a screening program. But you can’t separate it from prevention. And that’s something that’s become clear to me now. I’m part of an international group of patient advocates and scholar activists. In that group we’re always talking about the big picture, that prevention is so important. And you can’t talk about a screening and a cancer awareness program without actually including prevention as well.
So, we do know lifestyle factors are important. You look at some of the things. Obviously, smoking. There’s been enormous work done on that because smoking affects so many cancers, increases the risk in so may cancers. We know alcohol increases it. Processed meat increases risk of colon cancer. But being overweight and obesity, not just obesity, just being overweight is also a significant factor in not just colon cancer but in lots of cancers and also type 2 diabetes. And they are really down to lifestyle factors about diet and exercise.
These are significant things which a lot of people just don’t realize. They think they’ve got a weight problem, and their biggest concern is how it makes them look, you know, the esthetic aspects. We’re really trying to get across the message that being overweight is a significant risk to your life, to your health. And, if we could change those… There are also pieces of research that show that if you do get cancer, you know, colon cancer. We’re only talking about a risk; it’s a risk factor. Smoking, alcohol, obesity, processed meat – they don’t cause the cancer, they increase your risk.
Having a higher risk, if you can reduce your risk, that is a significant factor. But also, if you do get cancer because there is a random element to this, that’s what we call sporadic cancer. You can have the healthiest lifestyle going, but you can still get it just because of the nature of the aging of DNA. That by having good lifestyle factors, healthy diet, good exercise regime within the right optimal weight for your height and like, that it improves your chances of recovery and reduces the risk of recurrence. So, right from beginning right through to post cancer, healthy lifestyles are a significant factor.
Thank you for your insights, Steve. Please stay tuned for the second part of this special, which will be published shortly.
For this episode of Karger’s The Waiting Room Podcast on Rare Disease Day 2023, which is held on February 28, we spoke with Lisa Sarfaty from the National Organization for Rare Disorders (NORD). Lisa currently serves as the Vice President of Community Engagement, and particularly focuses on advocacy, education, and capacity building.
While addressing the 40th anniversary of the Orphan Drug Act (ODA) and of the foundation of NORD as an organization, we specifically tried to answer the question: “What does equity mean for people living with a rare disease?” We also looked at what should be done to actually achieve this equity in education, the workplace, and everyday life. Last but not least, we had a closer look at NORD’s plans for Rare Disease Day 2023.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
First of all, please tell us a bit about yourself and your work at NORD.
Thank you for having me. I am the Vice president of Community Engagement for NORD. I have been with the organization for 11 years now, which is amazing. In my role at NORD I have the privilege and honor of working directly with our community of volunteers and advocates and donors and patient organization leaders who are all working together to make positive change for the rare disease community. And I’ve been really honored to work on campaigns like Rare Disease Day, among others.
Now, before we come to the actual topic of equity, the Orphan Drug Act (ODA) turns 40 this year. And as the ODA also led to the formation of NORD as a result, with the two being closely intertwined, I’d be interested to hear your take on the ODA and what happened in these past 40 years to both NORD and the ODA.
Back in 1983, for context, there were fewer than 40 treatments available for rare disease patients and families, and there were a group of parents and patient advocates who were struggling to access the treatments that they needed for their children and for their loved ones. At the same time, there was recognition on Capitol Hill that there was this orphan drug problem. And so in the eighties, early eighties, it took a group of parents and patients and advocates forming a coalition. And that coalition advocated for the passage of the Orphan Drug Act, which was a piece of legislation, the first of its kind, really groundbreaking, that provided incentive for companies to develop treatments for rare diseases. And previously those incentives did not exist.
And so by virtue of the Orphan Drug Act getting passed, it was able to spur innovation and research into rare diseases that previously would have been orphaned by the medical and research community. And so that same group of parent advocates, led by Abbey Meyers, NORD president and founder for 25 years, realized that their work wasn’t done when the Orphan Drug Act was passed and that they were able to achieve such a monumental thing when they worked together and they united their voices. And so they decided to formalize the coalition into an organization that they called the National Organization for Rare Disorders. And that really paved the way and started the rare disease advocacy movement, both in the US and globally.
And the last 40 years of progress have been undeniable. When we look at the Orphan Drug Act as the example and it turning 40 this year along with NORD celebrating its 40th anniversary of an organization, we now have over 500 treatments for rare diseases in comparison to the fewer than 40 40 years ago. And so the Orphan Drug Act, in the work of the Rare Disease community, has been really instrumental in ensuring that we have greater opportunities for treatment, potential cures and just a recognition for rare diseases and the challenges the families face.
Many thanks for this overview, Lisa. So, what does equity mean for people living with a rare disease?
Equity in the context of rare disease would mean that patients and families affected by rare diseases would have fair opportunity to achieve their best health and well-being, regardless of race, ethnicity, gender, sexual identity, where they live, what disease they have. And today, unfortunately, we just don’t have health equity yet for rare diseases, and there are more than 7,000 of them affecting more than 25 million Americans who need health equity to be part of the conversation.
And so taking that a step further, I think some of the greatest barriers to health equity for rare disease patients and families are things like access to an accurate diagnosis, a timely diagnosis. I think it’s accessing medical experts that know how to diagnose and treat their condition that they can access locally, that don’t require high out-of-pocket costs to travel out of state for that care. In addition to them being able to fully participate in society. So, by virtue of it being health and well-being, that they can attend school, that they can go to work, that they have equal opportunity to be full participants in society and that they are not left behind.
You just mentioned the issue of barriers. Could you please provide us with a couple of more examples? Which barriers where disease patients may encounter?
I’m happy to, yeah. The number one barrier that we talk about is the diagnostic odyssey, and we call it an odyssey for a reason. The average, you know, for rare disease patients and families is that it can take 5 to 6 years to get a diagnosis, which means for some it’s greater than 5 to 6 years. And this is a long and arduous journey that can take more than 12 specialists and dozens of tests and out-of-pocket costs to hopefully receive an accurate diagnosis. Once the family gets that diagnosis, the second barrier that they face is whether or not there will be an approved treatment. So, while we celebrate the success of the Orphan Drug Act and the fact that we now have over 500 treatments for rare diseases, the unfortunate reality is that only 10% or less of rare diseases have an approved treatment. So, the chances of there being an approved treatment once you get a diagnosis are fairly low.
And so for a parent or a caregiver or a person being diagnosed with a rare disease, the obstacles just keep mounting at that point, because now you are dealing with: “How am I going to treat my disease? How am I going to slow the progression of this disease? Who can help me? Is there anyone out there that, any clinicians, any experts that know about this disease?” There may be barriers in support because there might not be a patient support group yet for that disease. And I think that patient support groups play a huge role in a person’s ability to achieve their best health and well-being. Being able to connect with other families who have gone through the same disease or condition and understand what you’re going through, looking to these organizations who know where the research is happening, they know where the experts are located. They’re working on education. So, that can be a huge barrier for patients and their families.
And then I think we can’t talk about barriers without talking about the financial burden that often comes along with a rare disease diagnosis. The NIH (National Institutes of Health) did a study and they recently published a statistic that said that rare disease patients and families see costs that are 3 to 5 times that of someone without a rare disease. And we know that these costs include things that are not covered by their insurance, things that they have to pay for out of pocket, the cost of treatment when there is a treatment for their condition, the cost of care.
And so for many families, this results in them having to make very difficult decisions and choices about affording their medical care and treatment or being able to stay in the workforce and have two incomes coming in or one income or having to be a full-time caregiver, and full-time caregiving really is a full-time unpaid role. It’s more than 40 to 45 hours a week for most caregivers, and that creates its own barriers to their health and ability to take care of themselves when they’re caring for their loved ones. And so, those are just some examples of the barriers that these families are facing, these individuals are facing, but it doesn’t stop there, certainly.
Let us take a closer look at two particular aspects of equity, namely in the field of treatment and diagnosis, as well as the area of work and education. What are your thoughts on this?
When I first started in rare diseases 11 years ago, I heard the term “zebra” and I didn’t know what it meant, and what I quickly learned was that when it came to rare diseases, oftentimes in medical school, doctors are taught “When you hear hoofbeats think horses, not zebras”, with the intention of “It’s most likely something common, and not uncommon, for your patients”. And the challenge with that is that we do have more than 25 million Americans and more than 300 million people worldwide living with rare diseases. And when you don’t suspect something to be rare, it’s going to continue to go undiagnosed.
NORD and the rest of community have been working really hard to address the diagnostic odyssey and really address the fact that rare diseases do occur. They are present. You will come across them in your medical practice, in your life. The statistic is that it’s one in ten Americans that have a rare disease. So, it’s really, while individually a rare disease affects fewer than 200,000 people, which is what makes it rare, collectively rare diseases actually aren’t that rare when you compare them to more chronic conditions like asthma or COPD (chronic obstructive pulmonary disease) or cancer.
And so I think when we talk about the diagnostic odyssey and health equity, I think one of the number one things that we need to do is to continue to educate and create awareness for rare diseases, help clinicians to access diagnostic tools and resources to help more quickly get to an accurate diagnosis. We need to reduce the burdens and barriers placed on patients to be able to access appropriate care. That’s something that NORD is doing through our rare Disease Centers of Excellence, where we have over 30 academic medical centers around the country who are equipped and ready to help diagnose and treat rare disease patients to improve their care. And then I think we also need to continue to help patients and families to know where to turn to so that if they suspect they have a rare disease, that they have opportunities to continue to pursue that on their own.
And I think an example, an easy example of that is when you are struggling with a rare disease and you suspect that you have one, oftentimes you’re not given the language to know where to go to look for answers. And so your physician isn’t telling you “You have an undiagnosed condition” where you can then type in “undiagnosed” into your search engine and then come up with all of these resources and support. So, oftentimes families are then having to go on the internet and just type in symptoms and try through symptom searches to figure out what they might have. And so I think making information more readily available to both the medical community and to society to help with that education and awareness is key.
And as to the second part of the question, what about the area of work?
So, we’ve done surveys over time, and we know that one of the challenges that our committee is facing is the ability to have accommodations in work and in school so that they can participate. And I think for a rare disease patient or caregiver, that may look different depending on their disease. And so everyone’s journey is unique, their needs are unique, their accommodations are unique. But I think right now society isn’t really set up to accommodate rare disease patients and caregivers in school and in the workforce.
Many conditions require medical attention throughout the day. They might have sensory challenges. They may require advanced opportunities for absorbing what they’re going to be doing throughout the day. They might need accommodations if they have conditions like narcolepsy, which is something that I’m familiar with through my own family, where, you know, a 9-to-5 work combination doesn’t actually work for them. And it doesn’t mean that they don’t have the skills or the ability to contribute to an organization, to a company, to their mission, and contribute their expertise. It just means that they might have to do it on a different schedule. They might need different accommodations so that they can maintain their health and well-being while also being a participant.
And so I think from a workforce and an education perspective, again, it goes back to awareness. You know, what are the unique needs and how do we meet every individual with a rare disease where they are so that we can address and accommodate them to do so, to be, you know, in school with their peers and in workforce that they want to with their peers. And I think right now it’s just very limited. And I think that’s again why we often see children with rare diseases homeschool. We see parents becoming full-time caregivers. And these are high burdens that are placed on these families. And it affects not just the patient with the disease or their parents, but it also affects their siblings and extended families.
And this brings me to my next question. And to be honest, you’ve kind of touched on it in one of your previous answers already. However, maybe you’d like to add a couple of more sentences on the subject. That is, what does equity mean when focusing on the families as well as friends of those living with a rare disease?
Well, I think there’s never a shortage of things to say, right, when we talk about equity and what the needs are. But, you know, I look at it in a few ways. So, when we look at caregivers, for example, there are very few resources to support caregivers in their caregiving roles. And so I think as a society, as a community, we need to look at how we can better support caregivers in their ability to do what they need to ask caregivers, but then also to take care of themselves as individuals.
And so an example of that is, within the last few years, NORD launched a caregiver respite program, and this is the first of its kind where we’re helping families to be able to take time off from doing caregiving to get the rest that they need. And so we give out stipends and this money can be used to pay for an in-home nurse to come and watch your child, your loved one, while you go do something that you need to just take a break from caregiving or get the support that you need, in-home or out of the home or whatever it might be, but just something to give caregivers that respite that they’re desperately looking for.
I also look at it in terms of the families, and as I mentioned, when a person is diagnosed with a rare disease, it’s not just that person that gets the diagnosis, it’s the entire family that receives that diagnosis and whose lives are now affected by the diagnosis. And so often the voices that are unheard are those of siblings who are also caring and supporting their family member, their brother or sister that has a rare disease, and also trying to participate in society, who are also trying to go to school and live normal “lives”. And they’re challenged by that. There is a lot that they are dealing with at a young age, conversations that they may be a part of the kids their age, other siblings their age wouldn’t necessarily be dealing with when it comes to these life-threatening, life-altering conditions.
And there are disruptions for them, disruptions in school, disruptions in their ability to do things outside of school with their peers. And so I think as a society, looking at these challenges, looking at the whole person and the whole family and understanding what their holistic needs are, those holistic access barriers and challenges and the burdens, and really starting to look at both systemic solutions and long-term sustainable solutions, but then also community-based solutions. So what can we do to help alleviate those burdens for our friends, for our families, for our neighbors, for our community members, so that they can again live their best health and well-being, which I keep coming back to because it’s NORD’s mission. But I think it’s also so germane to the health equity conversation.
I’d like to come back to one of your previous answers, where you addressed the barriers, the obstacles, and even the burden that rare disease patients encounter, which really do stigmatization and even discrimination play, and how can these be avoided in order to achieve social inclusion and equity?
So, in the context of rare disease, you know, we often hear that people face discrimination and stigmatization. Again in their workforce, in school, but then also just generally in their interpersonal relationships. And so what that looks like is, again, then feeling like they’re not seen, they’re not heard, they’re not worthy of medical care, appropriate, I should say, medical care that when they go into these health care settings, no one understands what they have. They don’t know about this disease. Sometimes they walk into these settings and they’re told: “You’re making it up. It’s all in your head. You don’t have a rare disease.” But, you know, they know their body. They know their health. They know what they’re feeling and what changes they’re experiencing. And so there’s a lack of validation and recognition which creates further isolation.
And I think that’s one of the things that so often families express they feel is being very isolated and they’re on an island by themselves and they’ve never met anyone else who has this disease. And maybe they’ve never met anyone who has a rare disease and understands generally what they’re going through. And they don’t have the ability to get the support that they need and the validation that they need that: “Yes, you might have a rare disease, and here’s, you know, the person or the group that is going to help you.” And I think having that support system that says “We recognize you, we see you, we hear you, and we’re going to help you figure out what you have” is so instrumental to removing stigma in health care.
I also think that, going back to accommodations and the barriers that people face, when we don’t create these accommodations, when we don’t look at the holistic needs and meet people where they are, it makes it incredibly difficult to move past the stigmatization because again, it goes back to: “Am I, how do you perceive me? How do you perceive me having a rare disease? How should I participate in society? And you know, what can I do?” But I think it doesn’t, it’s more than the individual.
I think, again, it takes a collective to come together to say: “We’re going to be informed, we are going to be educated, we’re going to help understand the plight of someone living with the disease and the challenges. And we’re going to support them with what they need and again, meet them where they are with their unique needs and challenges and figure out how we can help them to participate again fully in society.” And so, I think, one of the greatest things that we can do, again, just really comes back down to awareness and education.
And once you’re informed, once you’re educated, you are compelled to want to help, you are compelled to want to look at your loved ones and look at those within your community and say: “How can I be of service? How can I support the rare disease community for you in your journey?” I think it’s impossible. And I say that as someone who got, 11 years ago, pulled into this community and has not left for that reason. It is hard, once you are aware, to not want to do something. And I think that’s why things, you know, campaigns like Rare Disease Day are so important because they create that greater awareness, that understanding that then leads to collective action and support.
Speaking of which, and that brings me to my last question of this interview: What are your plans for Rare Disease Day 2023 and what are NORD’s plans for the awareness Day in terms of showing your stripes and lighting up for rare and showing your colors?
For those who don’t know, Rare Disease Day is an annual awareness campaign to bring attention to the unique needs and challenges of the rare disease community. This is a global campaign. So, it was started in Europe by Rare Diseases Europe, or EURORDIS, and then brought to the US the following year. And now there are more than 75 countries that participate in Rare Disease Day, and NORD is the US sponsor. So, we help to lead the campaign in the US with our community and our stakeholders. And there are a few key activities that we work on each year.
So, the first is the global chain of lights, which was started in Europe. And in essence, what we ask is that communities help us to light up for rare disease. And so what that looks like is having major monuments or buildings and bridges and just individual home and businesses locally to light up in the rare disease colors and help us to create visual recognition and celebration for rare diseases, which we have seen in other health campaigns that that really is impactful and that lighting up for rare is growing here. Here in the US, we’ve had the Empire State Building, as an example, participate, which, you know, there are over 8 million people living in New York City and millions more visiting daily. And so I think that’s something that’s been really great to see.
I also think one of the main calls to action and an opportunity is storytelling. So, we are looking for patients and caregivers and families and friends to share their stories of rare diseases and help us to amplify them. The more that we can put out into the world – information, education, awareness about these diseases and how they affect families and individuals –, the greater awareness that will be created that can then lead to bigger conversations about what resources are needed, what we can do to improve their experience, their lived experience with these conditions.
And so storytelling is really important, and I think, added on to that, is the Show Your Stripes campaign. And so, similar to the lighting up for rare, we are still trying to create a very visible recognition of this day, of this awareness campaign. And, in the US, we started the Show Your Stripes campaign, which again, going back to the zebra being the mascot, we are a herd of zebras who want to be seen. And so the call to the community and its supporters is to wear stripes on Rare Disease Day, on February 28th, and help us to start a conversation.
And we’ve seen that in different settings. For example, hospitals, when there are, you know, 25 or more employees wearing stripes all on the same day. It’s a conversation starter! “Why is everyone wearing stripes?” And it opens the door to a conversation to say: “Well, let me tell you about Rare Disease Day. Let me tell you about rare diseases.” And that really helps us to foster that dialog that then brings people back in to be part of the community, of the support system that we are creating.
And beyond that, there are events happening throughout January, February and March. So these events can be local events that we host with our volunteers. They can, you know, we have events that are legislative, so they’re being hosted on at State Capitol to help raise awareness of diseases among our policymakers. There are events that are happening on university campuses to help raise awareness among future doctors and future health care professionals about rare diseases, and then also community events like community fairs that work to bring information to families locally in a more accessible way.
So, really looking at what resources and services exist in our state to support those living with rare disease and building and fostering that community locally, that they can stay connected year round. And so I really encourage those who want to get involved in Rare Disease Day to go to the US website to learn more about what events are happening near you or ways for you to get involved and help show your support for the rare disease community.
Lisa, many thanks for your time and for the interview.
Diversity and Ability (D&A) is a UK-based social enterprise led by and for disabled people, i.e., 85% of their team self-identify as disabled or neurodiverse. Their aim is to support individuals, organisations and social justice projects to create inclusive cultures.
We spoke with Brian Lutchmiah and Piers Wilkinson about the work and achievements of their organization and their upcoming inaugural congress in December. Brian currently works as an Education Consultant for D&A and acted as the Manager of its Inclusive Education Team until recently. Piers is the former National Union of Students (NUS) Disabled Students’ Officer, and now supports the work of D&A as the Policy and Campaigns Lead of the Inclusive Education Team.
This is the second interview of our two-part special featuring D&A. The first part featuring Piers Wilkinson focuses on UK Disability History Month, which runs from November 16 until December 16, 2022.
Note: The statements and opinions contained in this podcast are solely those of the speakers.
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
First of all, could you please tell us a little about diversity and ability? What does your enterprise do? What are your aims and what do you do to achieve them?
Piers: Diversity and Ability is a disabled-led social enterprise. For people that don’t know what that is and are not based in the UK, it’s an organization that is run by and for disabled people. That’s our ethos and one of our mottos, and it’s done in the interest of social good. So, social justice and social campaigning and achieving impact. We’re about 11 years old now. We celebrated our 11th-year anniversary a little while ago, and we started off as an assistive technology training organization brought together by disabled people who saw that there was very little quality in specific support that was provided for disabled students in education regarding the use and uptake of assistive technology, the pedagogy of it all. And from there we’ve grown massively.
So, I like to say now that we are an organization that supports everyone and anyone, from the United Nations all the way down to your local corner shop, on improving and getting better at engaging with and supporting disabled people, whether that is young disabled people entering school for the first time or people that have just acquired a disability in the last couple of years due to COVID. No matter what your area of life is, we want to have an impact on improving society and improving things for people like us, as well as so that we leave the world a better place at the same time.
Brian: Just picking up from what Piers was saying, I think there are kind of three avenues that we do work through. One is around education and a lot of the work that we do in terms of impacting on the practice around particular elements of inclusion and expanding the whole continuum of education both in the UK and wider. We also do that work, as Piers rightly mentioned, with workplace and employers. So, thinking about the impact of need for students progressing into industry or for those who are disabled working out in the employment sector. And then the third element is working internationally.
So, thinking about the right to education. And again, it was mentioned about our work with the UN, so thinking about the sustainability development goals, and in particular I think it’s point number four on their SDGs, which is focusing on inclusive education and the right to inclusive education. So, across those three arms of D&A, that’s really the fundamental bridge that spans all of those services that we offer.
And when you look back at these 11 years of your history, what have been D&A’s biggest achievements so far?
Brian: I think there’s one yet to come, which is our conference happening in December. And I think that’s almost the zenith of an 11-year level of progress and development and growth for D&A in the space that we live and breathe in. But yeah, you kind of mentioned something there, Piers, about some of the successes we’ve had alongside.
Piers: So one of the things that I’m quite proud of as someone that comes from a background of being an oceanographer and a statistician, a lot of the work we do at D&A is not pinned down to the financial element. We are always focused on what is the impact, what is the culture change, what is the future and sustainable goal that we want people to work towards for supporting disabled people. But we were very fortunate only a little while ago, a couple of years ago, of being the focus of a social cost-benefit analysis. So, they independently looked into the work that we were doing and the social impact that we tried to achieve and said, you know, if we look at things in the brass tacks of things, what is the financial benefit as an organization that you do?
And amazingly, they came back with a figure that just astounded us that for every pound that is spent on the work that we do, we return about GBP 16, GBP 16.5 worth of cost savings and financial reinvestment into the economy of the UK, specifically for what we do specifically. So, for an organization whose primary focus has never really been “What’s the financial aspect?”, because we’re a social enterprise. Any money that we do make goes right back into the grants and the offerings that we create. To have that given back to us really made it so that our ethos and our way of working to be focused on the individual alongside the institution, to ensure that everyone thriving is actually financially fine as well. It actually makes sense fiscally. And that was done outside of our input and involvement. They just looked at us. We provided the information about what we do.
I think that, for me, is a really big achievement for D&A because we can win awards when it comes to culture, we can win awards, and we’ve got a plethora of them to a degree. But for me, it’s when the aspects of the things that we’re not really that invested in, which is the “Is this financially workable?”, besides continuing to exist but really being recognized for something that we inherently do just through the nature of the way in which we work, truly meant something to me and Atif, our CEO, as well. Once we’d worked out exactly what social cost-benefit analysis meant, because it wasn’t an easy task, all of the research was really such a big deal for the work that we do to be sort of recognized. It’s a good thing as well as an ethical thing to do and everything that we do.
Brian: And just to pick up on that as well, you know, over 85% of our staff team have lived experience of either being disabled, have a long-term health condition or being neurodiverse. And I would say that’s one of our major successes because living and breathing what we do, but also producing a platform for the voice of affected people, whether they’re disabled people, but actually thinking about social justice in its broadest sense of ensuring there’s a voice and a platform for everyone on an intersectional level. That’s always been part of our value set, and it’s something we’re particularly proud of.
And particularly when we are working with organizations, we’re not there to say: “You must be doing this because this is best practice and this is the right thing to do.” We’re able to say that with confidence because the work and the services and the offer that we provide has been designed very specifically by those with lived experience who have had the direct knowledge and experience of life as a disabled person, someone with a long-term health condition or being neurodiverse. And that, for us, leads not only to delivering something of value, but has a long-term sustainable element to it that impacts on the wider populations across our society.
Tying in with that lived experience being brought to the table, can you please explain the dual approach that you pursue? That is where Diversity and Ability combined the provision of a toolkit with the development of training.
Piers: The dual approach is something that I headed up a research project on specifically. A lot of what we do at D&A, we mentioned, is based on that lived experience, and it’s important that we connect with people to see what really would help them. So, we routinely have feedback mechanisms, conduct research in a way that allows us to develop our services to make sure that we meet the needs of both the community that we are from ourselves, but also the clients in the goals that they want to achieve. And what’s come out of that is an approach, this dual approach, which takes a look at the main issues that somebody might encounter within an institution, which is there are things available for them to apply for in the UK.
So, we have things like disabled students allowance and access to work which provide government funding for adjustment provision and costs. But they’re user-centered, they’re user-focused, and it’s navigating that as an individual that can be quite challenging. But at the same time a lot of work has been focused around that. However, there are aspects in my life as a disabled person that I know is well outside of my control. I don’t have the control of who designed the building that we work in, who designed the policies that the company uses, or who designed how the cafeteria space is laid out. Even these small things as a wheelchair user can be quite challenging when you want to go and make a coffee, and there’s a bunch of tables in the way. There are things that are outside of our power as individuals, and that’s what the dual approach recognizes.
It’s working with the institution, building culture change, building understanding. We don’t like to say we’re building awareness of disability because we’re 20% of the population. You should be aware we exist. Instead, we like to say we’re changing the way people understand disability. So, it focuses on the barriers and the issues at the heart of the matter, rather than any one individual or medical condition which should stay between the disabled person and their doctor, not their employer. The employer just needs to know what’s going wrong, how can we fix this? But at the same time equipping the individual to be able to have those conversations with their employer or with the education institution, to know their right, to know what funding is available, but importantly, how to get it. Because these processes are time-intensive. The number of hours a disabled person puts into just administrating the grants and funding that is available to them every week is monstrous.
So, that’s what we do, we look at the heart of the matter and we go, yes, let’s look at the power, the dynamics of where they are and the institutions they interact with. But let’s also equip someone via a toolkit with an interactive podcast-y, video-led multimedia resource that enables them however they best want to engage with the things that are within their realm of being able to engage with. Whether it’s the government grant fund schemes or just advocating for themselves. And we found, through the research that I headed up, that that is an approach that resonates a lot with disabled people in our community because they want to get better at advocating for themselves. They don’t want to lose that independence that control over what they have control over. They also get validated in their feeling of: “It’s not just my fault. I’m not just being difficult. The institution I’m working with doesn’t quite know its stuff.”
And that’s the dual approach. It’s taking that training, it’s taking that institutional culture change and empowering the individual, enabling the individual through the toolkits, the guides, the videos, the training montage, as it were, that you might see in a TV show and putting it in a place that’s freely available online on our website so that it doesn’t come at a cost to the disabled person and instead reinvests the money that we garner from the institution who take the training services and puts it into these projects so that the disabled person is never the one that has to pay for things.
Brian: And also, just picking up on something that Piers mentioned, which is inordinately disabled people have to jump through very complex hoops in order to get any level of entitlement or level of support. And so kind of having the aspect, as Piers has mentioned, around an accessible level of toolkit to simplify those processes is as important as what I would think governments, including the UK government and maybe wider, should be considering in terms of “Actually, why are these processes so complex? Are there simpler ways for disabled people to navigate the process so that they get their entitlements at the end in terms of their outcome?”. And so, the provision of a toolkit is in the instance where we live in a complex society, that means that those steps for disabled people are going to remain complex until they’re reviewed or enhanced in some other way further down the line.
And now we talked in general and could we just have a look at a particular field, which is healthcare? How can healthcare be made more accessible? Both for disabled patients and disabled learners and workers?
Brian: I would say access to information and the readiness of the access to information, both in terms of, I suppose, the varying formats. Universal terminologies. So, ensuring that information, advice and guidance provided to patients is clear and readable and understandable and not too jargon-heavy. And this feeds into the social model of disability where we know it can be the environment that disables the individual. If we approach any piece of work that has an impact on populations of people, that should be the approach to be taken, which is actually how do we ensure the environment is right. So, ensuring that literature advice and guidance is clear and simple and easy to access is a real big part of that.
And again, this kind of extends not only just from publishing and literature, but also through to the working environment. Thinking about clinical settings, thinking about GPs and hospitals and medical practices etc., and how they’re kind of set up in order to meet the needs of the varying community of people that access their respective services. And Piers rightfully mentioned earlier on in the recording about kind of being a wheelchair user and some of the aspects that need to be navigated. And I have lived experience of being with Piers and observing, with an offer of assistance, as always, but observing Piers and having to navigate actually quite complicated elements in order to get from A to B, whereas as a person with no physical mobility, I don’t have to do that. And so there’s aspects of thinking about environmental factors, as they are just as important as any in that process. Is there anything you would add to that, Piers?
Piers: I can add some specifics, I think, for the UK context. I think Brian has touched on the more holistic aspects of what needs to change within healthcare, but specifically within the UK, understanding within the medical professions, of the social and environmental aspects of disability, as Brian has just touched on, is incredibly important to both reduce the amount of bullying and harassment and inaccurate reporting that goes on within the UK medical field. If you’re a disabled doctor, you’re more likely to be reported by a colleague than you are a patient for not being able to do your job. And so there’s this cultural issue in the heart of healthcare where just saying you’re a disabled person as a professional can cause you to face barriers that if you had just been “quiet”, you wouldn’t have faced in the first place. So, it can end up being this duality of all: “Are my barriers due to my disability enough to warrant the risk of disclosing?”
And we do have a disclosure gap in the UK. The electronic staff record that the UK NHS has, for example, only has around about three, three and a half percent on disclosed record identify as having a disability. And the anonymous staff survey is from the unions. So, that number is 19%. So, we really do have a disclosure and culture gap within the UK healthcare professions, and if our doctors don’t feel comfortable talking about disability in their own workplace, given that they’re the experts on medicine, on the barriers, on my experience due to a condition I might have, how can we expect patients to enter into these environments and feel comfort and enthused to engage with the medical professional if the professionals themselves can’t operate freely?
The second aspect, I would say, is the state of education and the state of healthcare needs to rapidly update because if your computer is old enough that it can’t handle assistive technology and the software providers that provide for the hospitals haven’t updated their software to comply with the digital accessibility regulations that I know in the EU you have because I worked on bringing it into UK law, haven’t complied with that, then assistive technology isn’t going to work. Even if you do get through all of the hoops and the hoopla of engaging in disclosing your disability and you’re trying to get your assistive technology funded and you finally have all of the adjustments that you want. If the software that the system uses cannot integrate with the quite expensive assistive technology, as a user myself I know how expensive it can be to get started on AT, then it kind of makes it all redundant.
And that’s one of the things that came up. I remember talking directly to a disabled nurse who was saying that they absolutely love her job. They’re fantastic at their job, in the practical sense they excel. But then when it comes to actually filling in all the paperwork that comes with being a healthcare practitioner, that’s where the stumbling block because all of the funding that they have doesn’t help them with the fact that third party software doesn’t integrate.
And I think it’s those structural issues of culture and system design, quite specifically when it comes to software system design, that I think underpin a lot of the barriers that medical professionals in the UK face when navigating. So, it means if you go on placement when you’re not quite an employee but you’re not quite a student and you’re in that limbo situation where you can’t access these government grants sometimes, then you are in even more of a precarious situation and it’s a placement that’s critical to your continuation in your field.
And so it all sort of has that domino effect when we don’t get those small things right. It might seem not too big of an issue. When was the last time we updated our computers? When was the last time we changed our procurement policy to ensure that they’re complying with digital accessibility regulations? These are very small, minor questions, but they can go so far and have such great impact. But it’s having those conversations that I think the UK healthcare industry in particular needs to start having so that the burden isn’t on the individual to fight and challenge within their trust or within their sphere of influence. Alongside, obviously, what Brian said about the holistic aspect of healthcare change.
Brian: Yeah, I mean our CEO Atif Chowdhury once stated that inclusion moves at the speed of trust, and I think that’s a really pertinent one because it takes time to build trust and for certain areas of our communities, trust will be something that will need to be built and grown. And so that aspect between people, disabled people using healthcare services, there’s an element of trust that needs to be built over time.
We all know that trust can be broken at the click of a finger. It only takes one thing and everything can unravel as a result of that. And so using that precept of “Okay, what are we really trying to do here? We are trying to build services across healthcare, across all provisions, regardless of country, about trust in our healthcare provision, trust in the services that we offer, trust in the specialist knowledge and expertise and support that you will gain as a result of using those services.
But if someone has a poor experience, whether it’s from a customer service point of view or misdiagnosis or an elongated timeframe to diagnosis, trust can be broken very, very quickly. And that’s a precept that we know across our streams of work through D&A, both in education and in employment. We know it’s something that transcends society as a whole in that aspect. So, yeah, true inclusion means that the speed of trust is something that’s a core belief for us at D&A.
You already mentioned the conference that’s coming up and that takes place in Brighton on December 5 & 6. And the motto of the conference is “What inclusion looks like”. Would you like to tell us a bit more about the conference, its topics and pillars and why you chose that particular motto?
Brian: Absolutely. Firstly, we’re really excited about this conference. It’s our inaugural conference. As we kind of mentioned, we’ve been around for about 11 years, and it’s been a long time coming. And as we’ve grown, so is our reputation and our voice as a result of that time frame. So, the conference that we’re holding, we’re excited because it’s in person. And given the last few years that’s such a brilliant thing. Just to be in there in the company of professionals that both work in and across industry and workplace, but also in and across education, and bringing the two together within one environment. So, that’s something that we feel is really special about the conference that we’re holding, both in terms of the continuum through education, but then again into employment and industry. And there’s part and parcel, it’s kind of partly celebrating our 11th birthday or anniversary, I would say birthday.
And in terms of your question about what inclusion looks like, you could have a question mark to that at the end of that sentence. So, it’s like: “What does inclusion look like?” And if we’re thinking about inclusion in a very linear sense, when you say, “Well, inclusion is simply about supporting disabled people.”, we’re missing the intersectional element. We’re missing the ritual aspects of being human. And there the aspects that we are bringing into this conference, we’re not just saying “This is a conference because we are disability specialists, and this is what we do and what we’ve always done.”, what we wanted to do was showcase that, actually, there’s the lived experience and values that that brings to change and impact, but also celebrating intersectional elements that make us who we are and what we can bring and give.
And we have pride, I think, in our relationships and our partnerships with employers and education providers nationally and wider, in terms of the aspects of the transactional relationship, in terms of “Okay, we’ll share our learning”. And also we get learning as a means of response. And so for that, we know that as part of the work that we’re doing and continuing to do, we are able to amplify the voices of those that are impacted by decision making as a result of involving them in the decision making process. And that’s really the main core precept behind this conference and why we have decided to not only launch our very first conference, but also launching it in the period during Disability History Month as well.
Piers: I will specifically say that we have really, truly fabulous speakers coming to the conference to speak. From the education side, we have the Disabled Students Commission, and whilst I can’t say too much about who will be speaking because I am a commissioner and I’m bound by not revealing too much, I do know that it is one not to miss for sure. We also have Health Education England through our partnership work with the NHS coming to talk about some of the issues and solutions to the issues I mentioned in the previous question around health and supporting health professionals and learners in particular during transition.
We have UK CESR. I always butcher their acronyms, so if they’re listening I can only apologize, who are the organization that advocates and supports international students. They are coming to discuss their new charter. So, if you’re an educational professional, it’s really not a conference to miss. I can tell you that. But then because of the uniqueness of D&A and the fact that we don’t want to limit ourselves to just one factor, we have organizations like Transport for London. So, anyone in London knows about Transport for London. We have Fujitsu. We’ve got international companies here we’ve been working with for a while coming to talk about the work that they are doing within the employer space. And internationally, we’ve got partners from all over the world coming in from institutions to talk about for them what inclusion looks like and the work that’s been going on.
So, it’s both sharing of good practice and how they got there and where it got to. You know, we could have just done an education conference, we could have just done a workplace conference or we could have just done a social justice conference. But really, as a disabled person, we’re not unique in each of these areas. Our lives encompass every single area of social justice, the environment, everything to do with workplace. We will, fingers crossed, be entering the world of work, regardless of your disability and to get there education is critical. So, inclusion has to include all of those aspects rather than siloing them down. And that is why we sort of came up with the “What Inclusion Looks Like” conference.
And once again, I’m going to be quoting another quote from our CEO. I firmly believe in this, which is: “Diversity is counting people. Inclusion is insisting people count.” And that is why we like to use the word inclusion, an inclusive campus and inclusive design alongside universal design, rather than just talk about diversity. Because I think quite a few people have gotten a little bit jaded by the talk of diversity when inclusion hasn’t progressed alongside it. And that is why the conference is titled the way in which it is and why the conference is so broad but so useful regardless of the field in which you currently work in.
Brian: And the other element that will come out of the conference, and this is something that we’re really excited about as it’s taken a few years in terms of development. It’s the formal launch of the Accessibility Passport, which is going to be formally launched and will be open to anyone and everyone to potentially use. So this will be formally launched at the conference and is part of the “What Inclusion Looks Like” theme, because the idea of a digital passport, as an example, is it will be held by any individual throughout their life. Whether it’s in educational or in employment, and will be something that acts as a repository for any adjustments that they may need during their life, whether that’s in work, whether that’s within education, whether that’s within social life perspective, or whether that’s accessing medical services further down the line. So, this is another really big aspect that we’re incredibly excited about, and we’re just excited to share it, really, in all fairness. And the simplicity of it is beautiful, but the impact on it is much more so longer term. If we can get that message out there and get as many people to use the system as we possibly can.
What does inclusion look like in the UK in the year 2022 and what should it look like in your opinion?
Piers: I think for me, what inclusion should look like in the year 2022 is, as a disabled person, I’m seen for everything that I am, despite or without the barriers that I encounter due to my disability. And importantly, I know we’re not a utopian future quite yet within the UK, so I understand that I will always need to have that conversation about adjustments. But for me, inclusion is about the fact that I might need to only have that conversation once and I should only have to have a conversation once. I shouldn’t have to remind anyone. And that’s where the passport that we’re launching at the conference is so amazing. I love it to pieces already, it’s because I can just email it to someone digitally from my phone, from the app, and I don’t have to have that conversation again because I can just tell them, check my passport. It’s got all of the information you could ever need on there, plus all of my notes specifically for you.
And if that person annoys me and they don’t do what I ask them to, I can just unsend it to them. I can just remove their access, and that independence and that critical component of not having to repeat myself over and over again, I think for me is what inclusion in 2022 must look like, is centering independence and centering being listened to and understood. That first time when asking for support because it ain’t easy asking for support as someone that can be quite stubborn at times when I really should ask for support. That is, I think, for 2022, that is that goal. And then we can get to the utopian future in a couple more years.
Brian: And just to kind of feed off of that. I would say in the UK we have the Equality Act, which is a lawful binding document for society in the UK. As part of that there is something called the anticipatory duty. So, part of their anticipatory duty is that all organizations should expect that there will be communities accessing their services or that provision with their own needs. Quite simply. So, to anticipate what those needs might be and ensure that they’re fit for purpose to meet the needs of those people is a really important part and is a public duty.
I think one of the aspects, and I don’t think it’s limited to the UK, I think it’s probably much more global than that, is there’s a lot of assumption as to what people need, what disabled people need. And someone once said to me: “To assume is to make an ass out of you and me.” Feel free to edit that out, by the way, but it’s a play on the word, but it really does make sense. And there’s an irony behind where assumptions are sometimes used, particularly when working with disabled people and people from varying communities, that the assumption actually gets in the way of good, solid conversation, discussion. It’s much more evidence-based. It’s much more based on facts and knowledge of where that individual, that person or that group of people are at.
So, that level of assumption or those levels of assumption, I think, is something that we all should care about and share in terms of actually “How do we work together to limit the risk of assumption happening within and across our industries?”, whether that’s in education, within healthcare or wider industries, in such a way that we meet the needs of those with lived experience much more, but also including those voices in the design of. Because by doing so, the longer term aspect is you’re going to meet that anticipatory need and duty by virtue of including people in the co-design of those services. That’s kind of my aspect.
Many thanks for your insights and for the interview.
Waldenström macroglobulinemia (WM) is a rare blood cancer that usually progresses slowly. WM can be diagnosed by blood tests, bone marrow biopsy, and scans, and there are a range of treatment options available. To learn more about WM, we spoke with Bob Perry, who was diagnosed with WM in 2015 and treated with chemotherapy. Since then, he set up a support group, the Bournemouth and District WM Support Group aka the BAD WMers. He is also Patient Support Manager at the UK charity Waldenström Macroglobulinaemia UK (WMUK).
Note: The statements and opinions contained in the video and the podcast episode are solely those of the speaker.
Video Interview
Podcast Interview
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
Transcript
When and how were you diagnosed with Waldenström macroglobulinemia (WM)?
Okay, so I was diagnosed in 2015, but before that I’d been ill for about four years, constantly going to the doctor with a really serious nervous condition. That meant that my shoulders and arms didn’t work properly, and I also was extremely, extremely fatigued. And I kept getting sent away, being told I was anemic. What did I expect? I was approaching 61 years of age. I was getting older, you know, just go away. “Eat more spinach!”, one doctor said to me, to get some iron into me. But this went on, as I say, for about four years. I think I was probably ill for about four years. And it then transpired that, I saw a different doctor one day, and she decided to take some different types of blood tests.
I took the blood tests and I went away. And at that time, the Rugby World Cup was being hosted in the United Kingdom. I’m a big rugby man, and I had tickets for a game down in Cardiff, Australia against Fiji, took my wife down there and even there when I tried to get to my seat in the top row of the stadium, I had to take four attempts, I had to stop four times to get into my seat. I was so breathless. And there was a mysterious phone call that I didn’t recognize during the game, so I didn’t answer it. But afterwards I took the call and it was my doctor saying: “You better come back to Bournemouth because we’ve got a hospital bed waiting for you. There’s something seriously wrong with your blood results.”
And that kind of started it all off really. And I couldn’t go back that night. We’d planned to go out in Cardiff, so I went back the next day. I went straight into hospital. They told me that there was something seriously wrong, straight in for a bone marrow biopsy, which was quite unusual, I think. I think you normally have to kind of wait weeks or months for a bone marrow, but they wanted to do it straight away. And then within sort of hours they said: “Right, you’ve got a very rare blood cancer.” The joke about the name, I think, is that my doctor was a German doctor, Dr. Hoffer, a lovely, lovely man, but with a very, very German accent. And when he said to me: “Mr. Perry, you’ve got a rare blood cancer, and it’s called Waldenström’s macroglobulinemia.”, I said to him straight away: “That’s easy for you to say!” I’ve got t-shirts now with that on: “Waldenström’s macroglobulinemia. That’s easy for you to say!”, because it’s not easy for anybody to say, not even a German guy. But anyway, so, I digress there a little bit.
My readings were so high, some of my readings were so high, my infiltration was so high, that kind of unusually, I started chemo two days later. Chemotherapy. Exactly: Mine was chemoimmunotherapy. The reason being there were two drugs, bendamustine and rituximab. One is an immuno drug, rituximab, and the other one, bendamustine, is the chemo. So, it’s immunochemotherapy. So, I started on that immediately. Almost immediately I started, my nervous problems, my arms and my twitches and my spasms kind of stopped straight away. And then, like any chemoimmunotherapy, I did eight sessions over eight months. The first two were tough in as much as they made me tired and nauseous. But you can take drugs that counteract that.
So, for me it was quite a smooth transition from being really ill to eight months later feeling “Well, I feel pretty damn good”. And so that was my story really about how I was diagnosed. I was disappointed that it took four years of being ill, four long years of being ill and thinking: “Is this really what old age feels like?” And did I lose something in those four years? Yes, I did, because I’m a very active man. But, disappointed. But now when I talk to other people in my job, that we’ll talk about in a minute, about their illness, it’s kind of the same story for a lot of us. It goes undiagnosed. It goes so undiagnosed for so long. It’s nobody’s fault. It’s just the way it is, I guess.
What do your current symptoms look like and how do you cope with them?
My symptoms now, I would say almost zero, not quite. I do have the odd night sweat. Night sweat is a symptom of WM. Of course, the thing with WM with it being incurable but manageable is that I know, I fully expect that at some point in the future it will probably come back and it may get to a point where I need further treatment. So, I’m keeping my eye on the current symptoms. A little bit of night sweat. I’m seeing my doctor next month, I should tell her that. But apart from that, no real symptoms.
My biggest thing in that respect is staying positive and just noting the symptoms or possible symptoms that could be something else, of course. I must always remember that just because you’ve got WM doesn’t mean you haven’t got something else lurking about. So, yeah, remain positive; I am so positive about this condition and living with it.
How are you currently being treated for WM, and are you participating in a clinical trial?
I did the eight months of bendamustine and rituximab, so I’m now on what we call here in the UK active surveillance, or it’s known around the world perhaps as “Watch and Wait”. I don’t like that term “Watch and Wait”. It’s a very negative term. What is it we’re waiting for? So, we like to call it active surveillance, which is a positive term. It reassures me that my doctor is continually, every three months, actively surveilling me and checking on me and making sure I’m okay.
No, I’m not on a clinical trial. I am fortunate that in Bournemouth, where I live, the hospital, we’ve got a WM specialist, and she does conduct clinical trials. And we have spoken about it several times that if and when the time comes for me to start treatment again and if there is a suitable clinical trial at that time, she will consider me for it. So, I’m definitely up for clinical trials. I always encourage people that I speak to to do clinical trials if they’re offered them.
How do to look after yourself both mentally and physically? What do you recommend to others?
This is a big subject for me. Mental health is something I’m very interested in. I used to be a soldier, used to be a policeman. I have suffered mental health problems long before I got WM. I had mental health issues. In fact, still now, 20 years on, I’m still on a daily antidepressant. So, mental health is a big, big subject for me. I’m so passionate about talking about it and I understand totally, especially when somebody gets diagnosed with a condition like this or any cancer, any cancer diagnosis, the impact on your mental health is probably worse than actually on your physical health.
So, how do I deal with my mental health? I deal with it through doing some mindfulness, and being a guy, ten years ago or whenever it was when I started doing mindfulness I thought this is a bit wishy-washy, but well, it’s very powerful. It’s a very powerful tool to be able to use. In fact, we in the UK, with WMUK, we run a monthly mindfulness class with a professional teacher. She takes us through a mindfulness session once a month, which is very popular. So, mindfulness, I do breathing techniques that I’ve picked up on YouTube just to relax myself when I get, you know, sort of mentally troubled.
I’ve just started this year doing cold water therapy, which is an amazing tool for mental health. I think we all, we’ve all learned to live with Wim Hof at the moment. The guy, I think, is he Belgian or Dutch, I can’t remember. The Iceman, they call him, and he’s got some techniques, cold water therapy techniques, some breathing techniques, and I do those. For instance, for the last three months I’ve not had a hot shower, I’ve had only cold showers, and it’s incredible the mental wellbeing that exposing yourself to cold water can bring. I work with a group of ex-servicemen once a week here in Bournemouth, and we started doing cold water therapy. And these are guys that are troubled by recent conflicts in Iraq and Afghanistan, with PTSD, and you see them come alive, literally come alive for the sort of hour or two after we’ve done our cold water therapy. They can talk, they can engage. It’s a real fantastic tool. As mental, that’s how I deal with the mental side of things.
Physically, physically fit. I am a bit of a fitness bunny. Despite being 68, I still do crazy stuff. I use my rowing machine, I do cycling. I’m a big cyclist. I go to the gym, I walk, I love walking. I do a lot of physical activity. I’m a bit careful how I sort of publicize that because I know from talking to so many patients here in the UK that not all of our guys are in a position to be able to do that stuff. So, I have to be a bit careful. I have to hold back a little bit when I say, “Look, get yourself out and go for a bike ride or go for a walk”, because sadly, some of our patients can’t do that. Some of our guys, peripheral neuropathy is a big thing for WM patients. So, if you’ve got bad peripheral neuropathy, you can’t walk, you can’t use the rowing machine, you can’t run, you can’t do all this stuff. But what I do try and encourage is, is keep yourself as physically active as you can. And if that just means walking around the block once, then do it. Get out, get some fresh air, breathe in some fresh air. Look at the trees. You can then mix your mindfulness in with a little bit of physical activity.
It’s about doing something positive and trying to do something positive each day, I think, is the important thing. I sometimes find that even now I do get tired in the afternoon and I sometimes sit and think: “Bob, is this old age or is this your Waldenström’s?” And so I make myself, rather than lay down and succumb to it, I kind of make myself put my gym kit on and go and do something, whether it’s half an hour on the rowing machine or 3 or 4 hours on my bike. And you know what? I’ve got a psychological theory. Absolutely with no medical background or proof whatsoever. But I’ve got a theory for myself that all the time I’m doing physical activity, rowing, running, cycling, I’m pushing this bad blood that I’ve got in my body, around my body, and in my mind I’m not allowing it to stop and manifest itself anywhere in my body. I just keep it going round and round and keep what little oxygen it can pick up, keep that going round and round, and that’s my way of dealing it.
So, as I say, I’m very positive and I kind of almost apologize to people who aren’t as positive as me because I guess they’re thinking now: “That’s all right for you, Bob, but I can’t do that.” And I totally, totally understand that. And my heart goes out to those people. But I would say: “Just try. Just try and walk around the block.” In England we had a thing last year. I don’t know if you were aware of this, but Captain Tom was a 100-year-old veteran, and he wanted to raise some money for the National Health Service. So, he had what we call a Zimmer frame, a trolley, a walking aid. And he walked around his garden. And I think, I can’t remember how many times he did it, but he raised an unbelievable amount of money. But more than that, his approach, his manner, his enthusiasm, his positivity just shone. It just shone. Sadly he’s passed away now, but it shone out that this was a man who was being so positive and doing what he could. I guess that’s the important thing. He couldn’t do much. He walked with a frame, but, by golly, he did what he could, and it was amazing. So, yeah, positivity. That’s where I am and trying to spread that to other people.
What do you want the general public to know and understand about WM?
Yeah, this is a good question. I want them to know, first of all, that it exists because it is such a rare condition. And certainly, when I talk to people about it, I say I’ve got this rare blood cancer. “Oh, what’s that? Waldenström’s macroglobulinemia? Never heard of it, never heard of it.” So, I guess, our job, my job, your job is to raise awareness of this condition and let the people know that it exists because it’s one of those invisible illnesses, isn’t it? People say to me: “Well, there’s nothing wrong with you. I saw you cycling around on your bike yesterday or you’re always on your rowing machine. There’s nothing wrong with you.” Well, there is. And it’s invisible. You can’t see it.
Also, along with that is the fact that people need to know that we are immunocompromised, we’re clinically vulnerable, and especially at this time with COVID, we’re going to have to learn to live with COVID now for the rest of our lives. COVID is a big deal for us. It could be a big deal for us. Thankfully, a lot of us have had our jabs and we’ve now got antivirals. So, things are starting to happen for us. But in the early days of COVID, I lost two men that I know locally in my Bournemouth and District group, two men died of COVID. Both had comorbidities. Maybe that was the issue. But it’s real. We are immunocompromised, we are vulnerable. So, people need to know that.
And really the other thing is that to support the families of those people is to let the public know that it’s not just a person. It’s the same with all cancers, of course, or illnesses, of course. It’s not just the person who’s got the illness, but other people are affected by this, their families. And a big thing for me here with this condition in the UK is I’ve got a lot of very worried wives. So, husbands have got WM. Being men, they bury their head in the sand. They perhaps go into denial, but their poor wives, they’re just worrying themselves sick about their husband. And so it’s really reaching out to people to understand that it’s a family condition, basically. But I do concede that is the same for any cancer.
What are your tasks as the Patient Support Manager for Waldenström Macroglobulinemia UK (WMUK)?
Okay, well, what are my tasks? So, when I was offered the job; I guess I should tell you why I got the job. We had a new CEO take over, Jane, and she rang me and said: “Look, you’re, you talk about …”. I was very visible on social media and all these kind of things, trying to promote and talk about it and raise money for the charity. “We’re looking for somebody to be a patient support manager.” And I thought, well, I have no experience whatsoever in anything like that, having been a soldier and then a policeman. And then I went back out to Iraq and Afghanistan as a security mentor. So, no experience whatsoever in this.
But I thought, well, I can talk to people, let’s give it a go. She told me what my parameters were, and I started. And I kind of made up my own job description almost, based on what she wanted me to do. What do I do? I support, I inform, I empathize, I encourage, I connect people together and I signpost people and I raise our profile. What does that mean? The first thing I did was, on the back of my successful Bournemouth and District support group, which, by the way, just before COVID started I had about 60 members. These weren’t all WM patients. There were probably about 30 patients and then 30 wives, husbands, daughters, sons. And it was gaining momentum. We met every six months; we had three sessions and then, sadly, COVID came along and knocked them on the head.
But I thought, right, well, we can continue this. We continue this through Zoom, Teams meetings, whatever. So we set it up. And then I thought, well, in this case, I need to set up these sorts of groups all over the country. So I did. And we now have 19 groups around the UK. 13 of them are regional groups; for example, I’ve got an Ireland group, Scotland group, a Wales group, a London group, a North West group, a South West group, all these groups. But in addition to that, I set up some bespoke groups. I was conscious that we had a few people in our demographic who were, for example, young mums. Perhaps, by that I’m talking about ladies under 55 who’ve got children under 18. Whole different range of issues that they need to worry about. They’re still bringing their children up. I’ve got a young mum in Birmingham. She’s got two kids who are about, I think, four and six. So, the next 20 years she’s going to be looking after those guys, living with this condition. She’s got a job, she’s got a mortgage. Whole different range of issues to somebody like myself, a retired old man.
So, we set up a group called Young Mums, which is great. And it then transpired that we were getting younger and younger people being diagnosed. We think that this is an old person’s condition, but I guess with testing and such things now, younger people in their late twenties, early thirties, through their thirties are being diagnosed. Again, a whole new range of issues. These are people of working age, with their mortgages, with their families, all this kind of stuff. So, we set that group up, and just really a couple of other groups. There’s a comorbidity that goes along with WM, which is called Bing–Neel, which is when the condition crosses the blood–brain barrier, and it can affect your spinal fluid and the fluid around your brain, which has a lot of other side issues. But it can be managed, can be treated. So, we set our group up for that.
And interestingly, in my Bournemouth group, I’ve now got about eight or nine English people who live in Europe. So I’ve got two or three people who live in France, I’ve got one in Germany, I’ve got one in Portugal, I’ve got one in Holland, one in Switzerland and one in Belgium. And they’re English people, but they live in those places, so they’re in my group as well. So, it’s really supporting all of those. We do it at the moment through Zoom meetings; it’s all we can do, although in November here in the UK we have our patient–doctor summit where we’re inviting some of the guys to come along in person if they’re happy to do so and get to meet each other. And it’s really on those meetings, we listen to each other’s journeys.
By the way, it’s important to say that WM is an odd condition in that everyone of us has a different journey, with different side effects, different symptoms. It’s such a varied and secretive sort of disease, the way it affects us. It’s not like your breast cancer, which is very linear, or your testicular cancer, which is very linear. This is such a varied thing. So, it’s listening to each other’s journeys, empathizing, encouraging those guys to perhaps go and see another doctor, get a referral to a WM expert. But it’s also about connecting them with each other. And this is something I’m very fond of doing; if I look at my screen and I see a lady looking back at me who perhaps is a widow, and then there’s another lady on the screen who’s a similar sort of age, maybe a widow or doesn’t matter if she’s a widow or not. But I think those two could do with talking to each other, and I will invite them both separately, “Would you like to meet up?“, online of course, with so-and-so.
But already that is starting to transpire as we come out of COVID. We’ve got a group in East Anglia, which is in the east of England. About five ladies, they all meet up in a garden center and have a cup of tea once a month. And it’s great because they are talking to each other about their condition, they’re learning about each other. And there’s that sort of camaraderie there. There’s the serious side to it sometimes where I will signpost somebody, you know, “You need to speak to your clinical nurse“ or “You need to go back to your consultant”, or “You need to go to your general practitioner and talk this through with them”, because people just don’t know what to do. I’m not a doctor or a nurse. I don’t know what to tell them medically, but at least I hope that I can signpost them to where they can get the answers that they need.
And then the other thing I do, really, is to try and raise our profile as best I can. I love doing charity stuff. For instance, in November this year, I’m taking a group of people over the Brecon Beacons, which is in Wales. It’s where the army do their extreme training. It’s the second biggest mountain in Wales. Harsh, harsh place. And I’m going to take a group of friends and WM patients and a couple of doctors and a couple of nurses, and we’re going to try and raise some money, but more importantly, raise our awareness. And then next year, we’re hoping to do a London to Paris bike ride, again with doctors, nurses, patients, to raise much needed funds for our charity, but also to raise awareness.
So, I guess that those are my aims, and that’s my job description, and it’s something I absolutely love. And I said at the beginning that I had no training, but I have had training. I’ve got a life’s worth of experiences, of training, yeah, of experiences that have led me. I almost believe that all those experiences have led me to this point. Too right, I probably annoy some people. Perhaps I rub some people up the wrong way. It’s not intentional. It’s because I’m so passionate about wanting to help them and wanting to encourage them. So, I’m learning a little bit about myself as well when I do that. But yeah, that’s my job as a patient support manager.
Many thanks for your time and for your insight.
The yearly event known as Movember involves growing moustaches throughout the month of November to bring attention to issues affecting men’s health like prostate cancer, testicular cancer, and men’s suicide prevention. Movember is a combination of “mo”, the Australian-English diminutive term for moustache, and “November”. The Movember charity event is managed by the Movember Foundation, while Movember’s mission is to “change the face of men’s health”.
To find out more about Movember, we got in touch with Anne-Cécile Berthier. She is Movember’s Country Director for UK and Europe, and has been campaigning for men’s health since 2017.
Please tell us about the idea for Movember and how the movement to raise awareness for men’s health has evolved.
Movember exists to stop men dying too young by tackling some of the most complex health issues facing men today – mental health, suicide, prostate cancer and testicular cancer.
Movember funds and delivers biomedical research, cancer survivorship programs, innovative community mental health programs and digital health products that work for men. What started as a single-minded fundraising and awareness campaign in 2003 has evolved into a multi-faceted health organization with programs accessed by millions worldwide. We’ve made epic progress in men’s health, but every whisker of credit goes to our Mo Bros, Mo Sisters and Mo Communities around the world – they’re all truly inspirational.
What are your activities regarding men’s mental health and suicide prevention?
Globally, on average, 1 man dies by suicide every minute of every day – that’s over half a million fathers, partners, brothers and friends each year. Suicide prevention is one of the biggest public health challenges of our time but how and why suicides happen is incredibly complex.
At Movember, we’re constantly working towards a world where men take action to be mentally well, and are supported by those around them. And so that’s our mission. To get there, we’re uniting experts, funding bold new approaches and embracing fresh perspectives. Starting a conversation with men who are struggling with their mental health can sometimes feel a little daunting, and so to help build that confidence, Movember has created Movember Conversations – a free, interactive digital tool that presents a number of scenarios relevant to today’s world. Using simulated conversations, Movember Conversations helps people to explore and practice how anyone might navigate a difficult conversation with someone they care about.
What are you doing to raise awareness for prostate cancer?
Globally, more than 1.4 million men are diagnosed with prostate cancer each year. Men over 50, black men, or those whose father or brother had the disease are at even greater risk. If caught early, prostate cancer can be very treatable, and so men are urged to check their risk “without delay” so it can be found before the cancer spreads.
In addition to funding critical biomedical research, Movember also fund True North – a global prostate cancer program that seeks to significantly improve the lives and experiences of men with prostate cancer. Available in 7 countries, the platform provides men:
- with a place to share their prostate cancer experiences;
- understand the latest knowledge on care and treatment;
- guide men, doctors, partners and caregivers to make key decisions as a team; and
- discover ways to improve care and support for men living with and beyond a diagnosis.
Prostate cancer facts can also be found on the website to raise awareness of who’s at risk, the importance of getting a PSA test (a routine blood test), signs, symptoms and side effects of prostate cancer as well as understanding the current treatments that are available.
Source: Movember.com
What is your approach towards testicular cancer?
Testicular cancer is the most commonly diagnosed cancer in young men aged between 15 and 34, but 62% of those who are most at risk don’t know how to check themselves. However, Movember has it covered.
To ensure every male understands the correct procedure for checking their nuts, Movember has published “How-to” guides for frequent examinations. When caught early, testicular cancer is highly treatable and highly curable, and so the purpose of these guides is to encourage those who notice change to act accordingly. Nuts & Bolts is another guide Movember has created to support those during their testicular cancer journey. From diagnosis, to treatment, to life afterwards, the Nuts & Bolts tool kit provides each male with the right information to support them on their testicular cancer journey.
What can women do to support men’s health?
There are many ways not just women, but friends and family members can support men’s health. Whether that’s by growing a moustache, running or walking 60 km over the month, hosting a Mo-ment or deciding to Mo Your Own Way and taking part in an endurance test – every activity contributes to making significant impact towards changing the face of men’s health.
What are your plans for this year’s awareness month? Any surprises such as moustaches for planes?
This year and beyond we are continuing to raise awareness of men’s health issues by encouraging our Mo Bros and Mo Sistas to Grow a Mo, Move for Movember, Host a Mo-ment or to Mo Your Own Way. As for November 2022, you can expect to see more moustaches than ever before, so keep your eyes peeled for your Mo’s across town.
Many thanks for the interview and for your time!
For World Patient Safety Day 2022 on September 17 we got in touch with Professor Sir Liam Donaldson. He is the World Health Organisation’s Envoy for Patient Safety as well as Professor of Public Health at the London School of Hygiene and Tropical Medicine. Previously, he served as the United Kingdom’s Chief Medical Adviser and as England’s 15th Chief Medical Officer.
Note: The statements and opinions contained in the video and the podcast episode are solely those of the speaker.
Video Interview
Podcast Interview
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Transcript
Why was there the need to establish a World Patient Safety Day, and what did it take for the idea to come to life?
Patient safety has been a priority for health care systems around the world for some considerable time now. A recognition that the level of avoidable harm is too high and it needs to come down. And health care worldwide has been less successful in reducing the risks in its care than, for example, other high-risk industries like the airline industry, who have had a very good safety record and an improving record over the last two or three decades.
So, there was a need to re-energize and draw much more attention to the concept of avoidable harm in health care and get underway more programs of action in patient safety to try and reduce the risks of care. And with all of that in mind, a group of health ministers got together a few years ago, led by the United Kingdom’s health secretary at the time, Jeremy Hunt, to convene discussions amongst health ministers in a series of summits. And one of the ideas that came out of that was from the health ministers, and particularly Jeremy Hunt, the UK health minister, to have an annual World Patient Safety Day in a similar way to the way that other global health programs, for example, tobacco control have a No Smoking Day. And there are many, many other examples, but patient safety at the time did not have that same high profile. So, in advocating for it, these ministers were very successful.
Ultimately, the World Health Assembly, the annual policymaking forum of the World Health Organization, agreed that there should be a World Patient Safety Day. And we’ve had a few of them now. They’ve been very successful in drawing attention to the challenge of making health care safer worldwide.
Please tell us more about the resolution WHA72.6 – “Global action on patient safety” as well as its background and impact.
The concept of a resolution, for people that don’t know too much about how the World Health Organization functions: Each year there is a World Health Assembly which brings together all the countries, more than 190 countries of the world, and they’re represented at very senior level by their health ministers. All sorts of other people attend: NGOs, experts, commentators. And so it’s a very, very big meeting held in Geneva, Switzerland. And prior to that meeting, there are proposals made to a smaller body, an executive committee of the World Health Organization, which includes its director general and is chaired by a health minister from one of the member states, to look at a range of proposals that have come up through the system for new policies in particular fields. For example, maternal and child health, HIV, AIDS, nutrition, vaccines. And those are scrutinized by the executive committee. And then a certain number of them are recommended to go through for the approval of policymakers at the big annual World Health Assembly.
The resolution on patient safety was developed over quite a long period of time, two years, by the WHO’s team on patient safety, but also involving many experts, many representatives of member states, very wide consultation. Finally, it was approved by the World Health Assembly, but essentially the resolution was to commit all of the countries, all of the member states in the World Health Organization to give priority to improving the safety of care within their health system and to adopt a range of actions to do that. And World Patient Safety Day was one of the strands in the resolution, but there were many others as well. It’s the first time that such a comprehensive resolution has ever been agreed to tackle this challenge of improving the safety of care all around the world.
It’s important to recognize that although unsafe care happens to a degree in every health care system, the context is very different in different parts of the world. For example, in the low income countries in Africa, they’re struggling with poor infrastructure. They don’t have good access to care. The patients don’t have good access to care. And often levels of equipment and technology are not there to the extent that there would be in in a high income country like the UK or Europe or the USA. So, their concept of how to deliver safe care is very different. It’s much more about doing the basics, making sure that the patients who are seriously ill get somewhere to be treated, they aren’t financially ruined by the illness that they have, the staff are able to deal with the problem, albeit not maybe in using such high technology and medications that could be used in a high-income setting. But nevertheless that they do their best within the resources available to them to make the care as safe as it can be, given the constraints.
So, the resolution wasn’t just targeted at the places who’ve done most work on trying to improve safety. It tried to give a prescription for everybody into how they might tackle it, bearing in mind the very diverse contexts in which health care is delivered in different parts of the world.
What is the Global Patient Safety Action Plan 2021–2030, and how would you describe its goals?
Its goals are really to start by tackling what has become quite a controversial debate in health care, looking for the goal of zero harm, zero avoidable harm. And it’s controversial as an overarching goal because people say: “Well, you can never get to zero. Health care is so complex that it is often delivered in pressurized environments. And it’s unrealistic to think that you can eliminate all avoidable harm.”
So, we had a very extensive debate in producing the early stages of this action plan on whether everybody would agree to have a goal of zero avoidable harm. And I think we came to quite a good solution. I think nobody wanted to launch a plan that was impossible to deliver because it would demoralize everybody and people couldn’t feel motivated and committed to it. At the same time, we didn’t feel it was acceptable to say that certain harm is inevitable, because that takes away the motivation to do what everybody should be doing for their patients and give them the maximum protection that we can from some of the things that inevitably will threaten the safety of care.
I think we came up with quite a good option in that we didn’t say that we had a goal of avoidable harm in a technical sense, but we said we wanted everybody to approach their work, whether they are planning or leading services or delivering care as a practitioner, with a mindset that they were trying to do their work in a way that would avoid harm. We know that we won’t be able to get to zero harm in a technical sense, but we could get to a position where everybody in every health system in the world has a fundamental value, that they approach everything they do with the aim of preventing harm to their patients. So, that is probably the most important thing about the plan. It creates a culture, an attitude, a way of working, which is very, very patient-centered.
Then there are different elements to it which set objectives in particular areas, for example, ensuring that the best research evidence and information is available that can be used to monitor progress and target particular problems. There’s a very strong part of the strategy that is about enabling patients and families to play a big part in the program, and that’s been a feature of the WHO’s Patient Safety Program ever since I’ve been the Envoy for Patient Safety. We’ve had a program called Patients for Patient Safety, which includes many families whose members have been victims of harm, perhaps have died due to an unfortunate error.
Those people command huge respect because they’ve overcome grief and the trauma of perhaps losing a loved one. But they’ve set themselves to help us in the health systems of the world to improve. So, when they tell their stories about what happened to their family member who was involved in an incident where they were harmed or even died, then I’ve observed when I’ve watched them telling their stories to audiences of health care workers and policymakers, that they move the heart in a way that a presentation from somebody like myself, a doctor, would not be able to do. They light up the emotion and the compassion that’s within the heart of every health care worker who wants to do their best and gives them, I think, a connection to what avoidable harm means in real people’s lives. And I think that’s a very precious part of the strategy which we want to ensure in the implementation is given a great deal of emphasis: the direct engagement and connection to patients and families.
“Medication Safety” has been selected as the theme for World Patient Safety Day 2022, along with the slogan “Medication Without Harm”. Why did you choose these in particular?
It has to do really with two things. One, the size of the particular safety problem. I mean, sometimes the technical description of that is the burden of harm or the burden of disease. And medication safety, when you look at the different causes of unsafe care, they range from things like the wrong surgery being conducted on a patient to possibly falls from patients who are not being supervised in an elderly care setting and injury resulting from that, across a wide range of categories. But when those categories are all added up, then overall errors and unsafe actions involving medicines account for about 40%. So, the burden of harm is a big category and it does need to be tackled.
I think the second thing is that we like to choose something that is recognizable to the public around the world, that it makes sense to them and they can see why we’re trying to do things. And if you just think very generally about medication, it’s probably about the only aspect of health care which would apply to virtually everyone in the world. Maybe there are a few people who live their lives, never having taken a tablet or having had an injection. But there must be very few. So, the safety of the medication that you’re given as a patient affects everybody’s lives. Billions and billions of people around the world. And so that’s another reason why there’s a connection between World Patient Safety Day at a global level and the individual living anywhere in any community in the world.
Finally, I think it’s a good topic because we understand the causation of errors and harm in medication much better than other fields because it’s been very extensively studied by researchers. For example, we know that some errors occur because different drugs are packaged and labeled and have color coding in very similar ways, even though they’re entirely different in their effects, so that, for example, in an urgent situation, a nurse could be reaching for the package to get the medicine out and give it to the patient through an injection or an intravenous line. And she could inadvertently pick up the wrong medicine. And that has happened and does happen around the world.
And that’s why we sort of enter another slightly controversial area there, because there has been a tendency, particularly with errors involving medication, to blame the health care worker for making the mistake. The whole philosophy of programs in patient safety, including the global Patient Safety Action Plan and all the work that’s been done, is that it should be rare to blame an individual unless they’re absolutely negligent. Most errors occur because of good people working in a weak system. The example I’ve given you of the packaging and labeling of medicine, that is the reason that the nurse makes the error, not because she is careless.
We have to get away from a situation where there is a blame culture and individuals are disciplined or even charged with criminal charges for making errors where really they weren’t negligent. It was the design of the system and processes of care which provoked them to make an error.
Having this topic as World Patient Safety Day is also a way of highlighting that area, of ensuring that people realize that many mistakes are honest mistakes. We need to work very hard to design processes of care and care environments and health products which don’t make them error-prone. And in that way, we stop the devastation that occurs to patients when they’re the subject of a serious error involving medicine, but we also protect our very conscientious and caring staff from being accused of something which really wasn’t their fault, even though they were involved in it.
What are your plans for World Patient Safety Day 2022 on September 17?
We’ve learned a lot from the previous World Patient Safety Days. Some of the past ones have involved topics like last year’s, which was maternal and child care, the year before that, which was coming out of the pandemic, it was health worker safety because a lot of attention had been drawn to the risks that courageous health care workers around the world had taken in going into environments, often with insufficient protective clothing, and subjected themselves to risk. And indeed, some of them died.
Each of the topics has highlighted something that’s really important. And so, above anything, as I see it, the activities of World Patient Safety Day are an opportunity for clinical care teams around the world, as well as policymakers and as well as patient groups to highlight and showcase the work that they’re doing, and sometimes to enable them to be empowered in their own countries to do more of the work they’re doing, because sometimes they’re hidden from view. Their bosses don’t even know about the good things that they’re doing. It’s an opportunity to get all of that into the open and celebrate not just the commitment and passion that such people have, but also some of the results they’re achieving so that we can share good practice and ensure that people in different parts of a country or different parts of the world can learn from each other’s experiences.
Many thanks for your time and for the interview.
For Prostate Cancer Awareness Month, which is held in September each year, we got in touch with Adjunct Professor Sally Sara, Director of Nursing Programs for the Prostate Cancer Foundation of Australia (PCFA), to find out more about the Prostate Cancer Specialist Nurses of Australia.
What does it take to become a Prostate Cancer Specialist Nurse?
Being a Prostate Cancer Specialist Nurse (PCSN) is all about having a passion for supporting men and their families through all stages of prostate cancer diagnosis, treatment and beyond.
PCSNs are often the first point of contact for men who are newly diagnosed, and they continue to be a vital source of information and support from navigating treatment, to seeking referrals, and managing treatment side effects for the months and years that follow.
Our PCSNs are all qualified nurses with experience in urology, oncology or other relevant areas of healthcare. On joining our program, they undertake an in-depth prostate cancer nursing e-learning course and participate in a robust annual professional development program.
“Prostate Cancer Specialist Nurses are often the first point of contact for men who are newly diagnosed.”
What are the tasks of a Prostate Cancer Specialist Nurse, and can any patient contact you when in need?
PCSNs are available to access for all men in Australia diagnosed with prostate cancer. We have over 100 nurses in locations across Australia, plus a dedicated team available via telephone. Prostate Cancer Foundation of Australia (PCFA) nurses:
- Provide clear and consistent evidenced-based information and resources about all aspects of prostate cancer.
- Help men to understand their diagnosis, treatment options and ways they can manage side effects.
- Provide men with support to make informed decisions about their health.
- Offer relevant practical and emotional support tailored to their prostate cancer needs.
- Link men with local support networks including Prostate Cancer Support Groups, PCFA’s Prostate Cancer Counselling Service, and peer-support programs.
“Prostate Cancer Specialist Nurses are available to access for all men in Australia diagnosed with prostate cancer.”
Which role does the Prostate Cancer Specialist Nursing Service play, also in connection with the Prostate Cancer Foundation of Australia (PCFA) and when working as multidisciplinary teams?
PCSNs, placed in health services across Australia, are supported by the PCFA working in partnership with their employing local hospital or health network. PCSNs are an integral member of health service multidisciplinary teams and work closely with all relevant health professionals to provide a high level of patient care to men diagnosed with prostate cancer.
“Prostate Cancer Specialist Nurses are an integral member of health service multidisciplinary teams.”
Please let us know more about the Prostate Cancer Specialist Telenursing Service.
PCFA’s Prostate Cancer Specialist Telenursing Service was first launched in March 2021 to meet an increasing demand for accessible prostate cancer services. Through the telenursing service, all Australians impacted by prostate cancer, no matter where they live, can now have access to a Specialist Nurse simply by picking up the phone.
Our Specialist Telenurses are all qualified nurses with training and experience to support men through a diagnosis, and provide information on everything from treatment options to management of side-effects and referrals to other health care professionals.
“The Prostate Cancer Specialist Telenursing Service was launched to meet an increasing demand for accessible prostate cancer services.”
In addition to other challenges, what is the impact of prostate cancer on the mental health of both patients and their families/caregivers?
Prostate cancer is the leading cause of cancer in Australia, with over 24,000 men diagnosed with the disease every year.
With over 240,000 Australian men alive today after a prostate cancer diagnosis we know that one in five of those men will experience anxiety or depression as a result of their diagnosis. Of concern, patients also face a 70% increased risk of suicide death.
Right now, 72% of men also don’t seek support for their distress which urgently needs to change.
Our PCSNs, Telenurses and Counsellors are helping to address the problem and help reduce the distress experienced by men with prostate cancer and their loved ones.
“We know that one in five Australian men with a prostate cancer diagnosis will experience anxiety or depression as a result of their diagnosis.”
To which extent do you participate in events, such as Prostate Cancer Awareness Month in September?
Prostate Cancer Awareness Month is a major month on our calendar and we encourage people right across the globe to use it as an opportunity to help raise awareness of prostate cancer and encourage more men to speak to their doctors about their testing options.
People across the world can also join “The Long Run”, a unique challenge which encourages individuals and teams to run, walk or wheel 72 km throughout September to make a difference and help end the pain of prostate cancer. People can register here.
Many thanks for your time and for the interview.
A cavernoma is a cluster of abnormal blood vessels, usually found in the brain and spinal cord. They are sometimes known as cavernous angiomas, cavernous hemangiomas, or cerebral cavernous malformation (CCM). It is a rare condition, typically looks like a raspberry, and is filled with blood that flows slowly through vessels that are like “caverns”. A cavernoma can range in size from a few millimeters to several centimeters across.
We got in touch with Ailsa Crowe, Digital Content Producer at Cavernoma Alliance UK (CAUK), to learn more about the condition.
First of all, what is a cavernoma, and which symptoms are associated with it?
A cavernoma is an abnormality in a blood vessel in the brain or spinal cord – it looks like a raspberry. About 1 in 600 people has a cavernoma – but most people will never know it’s there. It is only when the cavernoma grows or bleeds/oozes blood that it causes problems. A cavernoma that grows or bleeds – a symptomatic cavernoma – can cause a variety of symptoms depending on its size and location in the brain or spine.
The most common first symptom of cavernoma is seizure – many people live with epilepsy as a result of their cavernoma bleeding. Other predominant symptoms include haemorrhagic stroke and focal neurological deficit, like a stroke but without new bleeding on a scan. These in turn cause symptoms such as dizziness, slurred speech, double vision, muscle paralysis/weakness, tremor and numbness, which may also lead to extreme fatigue, memory and concentration difficulties, headaches, and other symptoms.
The severity of symptoms and persistence of bleeding determines the type of treatment available for cavernoma patients. Often, doctors consider the best approach to be what is called “watch and wait” where the behaviour of the cavernoma is monitored over time, and medication given to alleviate difficult symptoms. When the severity of symptoms and the risk of re-bleeding outweigh the risks associated with surgery, a doctor may recommend treatment, usually neurosurgery to remove the cavernoma, but sometimes Gamma Knife surgery (also known as stereotactic radiosurgery) – a less prevalent procedure that “zaps” the cavernoma with radiation.
Your Strategic Plan includes three objectives: Care, Response, Cure. Please tell us more about these aspects.
The CAUK Strategic Plan was approved at the January 2022 Board Meeting, with three parts: Care, Response, Cure. We deliver on our Mission via the five programmes of our Action Plan.
Care
- Direct support for adults (68% of our membership base are adults with cavernoma).
- Direct support for children and young adults with cavernoma and their families (4.2% of our membership are parents of children with cavernoma).
Response
- Raising awareness of this rare condition with medical and social care professionals.
Cure
- Aiding both UK and international research to improve the care and treatment of cavernoma and find a cure.
Underpinning Operations
- People: internal (our staff), external (our members, our volunteers and the public).
What is the physical and mental impact of cavernoma on those affected by it?
The physical and mental impact of cavernoma goes beyond what we could capture in just a couple of paragraphs. As with many conditions that affect the brain and spinal cord, the impact of the condition varies greatly depending on exactly where a cavernoma, or multiple cavernomas, are located. As we mentioned before, cavernomas can grow or bleed, causing devastating consequences – including haemorrhagic strokes, seizures, paralysis and sensory problems (to name but a few). Bleeds cannot be predicted, and there is no cure for cavernoma.
On top of having to manage the difficult physical consequences of a cavernoma growing or bleeding, the anxiety caused by not knowing when symptoms might worsen means patients often experience long-lasting mental health difficulties. A cavernoma diagnosis can affect an adult’s ability to maintain gainful employment, which can have devastating effects on financial stability and self-esteem. For children, diagnosis can severely affect their confidence, therefore limiting their ability to progress academically in school and make friends and socialise in the same way as their peers.
With only one in 5,000 people affected by symptoms, symptomatic cavernoma are rare. Those with the condition will seldom meet others with cavernoma (except through the wonderful cavernoma community at CAUK), leaving adults and children alike feeling isolated and alone.
Symptomatic cavernoma can be a sporadic or familial disease. When a patient has more than one cavernoma it usually indicates that they have the genetic form of cavernoma: There is a 50% chance that a parent with the genetic cause might pass the gene on to their child. Thus, in many cases several generations of the same family live with multiple cavernomas in their brain, many of which will cause difficult symptoms. It goes without saying that the many challenges associated with this familial strain can be devastating.
Are there currently any trials being undertaken (such as the CARE study), and which new treatments for cavernoma are on the horizon?
Cavernoma is a rare condition for which research is relatively young. It only became possible to diagnose cavernoma with the advent of magnetic resonance imaging (MRI) in the 1980s. In those early days MRI machines were not nearly as common a resource as they are now.
Since there was no means for diagnosis, cavernoma was a poorly known condition – it was in effect a “new” ailment with no history. It is only gradually over the last just 4 decades that clinicians have learned to associate certain symptoms with the presence of cavernoma.
We are happy to report that research into cavernoma and potential treatments has gained significant momentum over the last years. There are a number of active research trials taking place as we speak, including the CARE study – for which CAUK is the patient group and was heavily involved in its design.
The CARE study, the first ever pilot clinical trial for cavernoma, seeks to determine the best treatment option for patients with symptomatic brain cavernoma. It aims to answer the question “How effective is treatment with neurosurgery or stereotactic radiosurgery versus treatment without surgery in people with symptomatic brain cavernoma?”. You can read all about it via our website.
In terms of potential new treatments for cavernoma, there are currently three exciting randomised controlled trials (RTCs) underway internationally, testing the following repurposed and completely new drugs for effectiveness in treating cavernoma:
- Propranolol (Italy, repurposed drug).
- Atorvastatin (USA, repurposed drug).
- Rec994 (“Sycamore Trial” – USA, new drug).
In addition to these RCTs, there is a substantial amount of cavernoma treatments which may lead to trials in the next year or so, in particular for biomarkers. Our sister organisation in the US – Alliance to Cure Cavernous Malformation – has, for example, recently announced their participation in early “animal model” research on the potential promise of focused ultrasound as a minimally invasive treatment for cavernoma.
We are hopeful for the future!
Please tell us more about the “CaverBuddies” mentioned on your website.
“CaverBuddies” is a Peer Support Scheme which matches up fully trained and DBS checked volunteers from our cavernoma community with people who are in need of support. With cavernoma, a rare condition that few people – even many clinicians – have ever heard of, we find that some of the best support comes from others affected by cavernoma who have a similar lived experience.
A person’s cavernoma symptoms and experience differ significantly depending on which part of the brain their cavernoma is in. Our matching process ensures that our trained volunteer and the person in need of support have similar cavernoma background and symptoms, so that the experience is as beneficial as possible. The “CaverBuddies” scheme helps people to navigate their diagnosis and cavernoma journey, feeling less alone and more in control.
Many thanks for your time and for the interview.
From August to October, thousands of people across the UK will come together to take part in Shine Night Walks to raise money for life-saving cancer research. These spectacular walks take place in some of the UK’s loveliest cities, taking in local and national landmarks that have been lit up to make the night truly special. To sign up, visit shinewalk.org.
To find out more about these events and the impact they have on cancer research, we turned to Cancer Research UK’s head of events and sport, Gareth Mulcahy.
What is the history of Shine Night Walks?
Our Shine Night Walks have been running for 12 years – the first ever event took place in Manchester in 2010 and saw 7,400 people take part in a walking marathon through the city’s streets at night. The event raised GBP 1.7 million and kick-started Shine Night Walk as we know it today. In 2011, we added London and Glasgow to the schedule, and we’ve continued to grow ever since.
This year, Shine Night Walks will take place in 19 cities across the UK, with 23,000 people walking through the night to help beat cancer. All cities offer a 10 km route, and our London Shine Night Walk has half marathon and full marathon options, too.
What is the main attraction for people to take part in a Shine Night Walk?
Shine Night Walk is no ordinary event, it’s an exciting and magical night-time walk. As well as passing some of the UK’s most famous landmarks, it allows people to see and experience their city in a whole new way. People often enjoy doing it as a group, or team, so it’s a fun social occasion, too. All Shine Night Walk events are non-competitive, and participants are encouraged to walk at their own pace. There is always a great atmosphere.
Of course, a lot of people who take part have been affected by cancer, either having experienced it themselves or because they know someone who has had a cancer diagnosis. Shine Night Walks offer the chance to celebrate and remember people while raising money for research that will save lives.
Everyone who signs up is given the option to fundraise for all cancers or choose an area or type of cancer research to fundraise for.
Why do people have to pay in order to take part in a Shine Night Walk?
Entry fees help with the cost of putting on the event.
Once a person has signed up, they will receive a Shine Night Walk pack. What is in the pack?
All participants receive a Shine Night Walk pack, which includes a unique walker number, a t-shirt, a course map and a back sign to write specific reasons for taking part, or share a tribute to someone special.
We’re making conscious efforts to be more sustainable, so we’re sending fewer printed materials this year. You can, however, visit our website to download extra materials such as a fundraising pack with lots of useful information and ideas, posters, and more.
How can people support Shine Night Walks without taking part in the walk itself?
As well as taking part, there are other ways that people can support Shine Night Walks, including volunteering. Our volunteers are beacons in the dark, offering participants encouragement throughout the challenge and cheering them on. The volunteering roles include helping set up the course, guiding supporters around the cities, and handing out well-earned refreshments. We simply couldn’t run the events without them. There is more info about volunteering here.
People can also help promote Shine Night Walks by sharing their experiences of cancer by signing up to be a media volunteer. A lot of people sign up to our events after reading about people’s lived experiences. Full details can be found here.
How are Shine Night Walks helping Cancer Research UK to achieve its goals?
At Cancer Research UK, we rely on the generosity of our supporters to fund our life-saving research into the prevention and treatment of all types of cancer. 1 in 2 of us will get cancer in our lifetime. Everyone who takes part and fundraises through the Shine Night Walk will help Cancer Research UK bring about a world where everybody can lead longer, better lives, free from the fear of cancer.
Are there equivalents of Shine Night Walks on an international scale?
We don’t have any Shine Night Walks outside of the UK. There are international challenge events which will allow participants to fundraise for their chosen charity.
About Cancer Research UK
Cancer Research UK is the world’s leading cancer charity dedicated to saving lives through research, influence and information. We want to accelerate progress and see 3 in 4 people surviving their cancer by 2034.
Many thanks for your time and for the interview.
Gastroparesis, commonly known as delayed gastric emptying, is a condition in which the stomach does not empty completely. In the absence of any obvious obstruction or blockage, gastroparesis is defined by the presence of specific long-term symptoms as well as delayed stomach emptying.
On the occasion of Gastroparesis Awareness Month, which is observed in August, we turned to Hayley McCorkle, Program Manager at the International Foundation for Gastrointestinal Disorders (IFFGD). The organization seeks to bring vital health messages about gastroparesis diagnosis, treatment, and quality of life issues to the public’s notice. Improved understanding of gastroparesis will aid patients and families in managing the illness, as well as the promotion of preventive initiatives.
What are the symptoms of gastroparesis?
Gastroparesis is a condition of slowed stomach emptying with no intestinal blockage that can vary from life-limiting to life-threatening. Healthcare providers often refer to it as delayed gastric emptying. This is a motility disorder where the stomach does not empty food as quickly as it should. Symptoms usually occur during or after a meal and can appear suddenly or gradually.
Symptoms of gastroparesis typically include:
- nausea and/or vomiting,
- stomach pain and discomfort,
- dry heaves,
- stomach fullness after a normal-sized meal,
- early fullness and the inability to finish a meal.
Additional symptoms, such as bloating, stomach discomfort or pain, loss of appetite, and heartburn, among others, may occur. Left unmanaged, gastroparesis can lead to additional complications, including severe dehydration, obstruction, poor insulin control in individuals with underlying diabetes, and malnutrition due to poor absorption of nutrients.
“Gastroparesis is a motility disorder where the stomach does not empty food as quickly as it should.”
Why is gastroparesis commonly misunderstood and often misdiagnosed?
We may not know why gastroparesis is commonly misunderstood, but we do know that the symptoms are very similar to other illnesses, which can make it difficult for a provider to make an accurate diagnosis. Despite many researchers who have joined forces to learn more about this gastrointestinal condition and the burden posed on those affected, little remains known, and many face diagnostic delays. Those who live with gastroparesis suffer an average of five years before receiving the necessary answers and care. Patients may experience multiple misdiagnoses during this time, undergoing numerous hospitalizations and diagnostic tests. Researchers around the world are still investigating and searching for answers. So, those living with gastroparesis are not alone, and we are hopeful that there is light at the end of the tunnel.
“The symptoms are very similar to other illnesses, which can make it difficult for a provider to make an accurate diagnosis.”
How is gastroparesis treated?
The treatment of gastroparesis in an individual often depends on the severity of symptoms. Treatment options typically aim to manage symptoms over a long period.
Treatment options for those living with gastroparesis may include:
- dietary and lifestyle measures,
- medications, and/or
- procedures that may include surgery, such as
- enteral nutrition,
- parenteral nutrition,
- gastric electrical stimulation (Enterra), or
- other surgical procedures.
No single treatment helps all persons with gastroparesis. It is important to speak with a healthcare provider to determine the best treatment option for you.
“No single treatment helps all persons with gastroparesis.”
How does gastroparesis impact the lifestyle and quality of life of those affected as well as of their families and friends?
Gastroparesis is a long-term condition that can impair quality of life and well-being. Living with gastroparesis affects those who suffer and many others, especially family members and friends. It also touches on relationships in the classroom, workplace, or social interactions. It takes skills and strengths to deal with a challenging digestive condition like gastroparesis. It means being a kind of active researcher, always looking for what does and does not help, hurt, and work best. It is important for patients and their caregivers to understand the condition and to advocate for better health. If you or a friend or loved one has gastroparesis, it is also important to understand that you are not alone with this diagnosis.
“It is important for patients and their caregivers to understand the condition and to advocate for better health.”
What is the advice of patients living with gastroparesis regarding self-care, prevention and risk management?
Although the cause of gastroparesis is commonly unknown (idiopathic), in about 1 in 4 people, it can occur as a complication of long-standing diabetes. With that said, many things can affect the health of individuals. Some things are out of their control, and some they can control. Outside of making healthy lifestyle modifications, living with gastroparesis will push individuals to look for what works best for them at different periods of their life. Developing the best treatment or management plan with a healthcare provider can help improve their health-related quality of life. When a person with gastroparesis takes preventive steps it can help ease symptoms, lessen the unwanted effects on daily life and enhance the well-being for patients.
Some preventive steps may include:
- working with a gastrointestinal specialist who is familiar with gastroparesis,
- developing a multidisciplinary healthcare team that includes a registered dietitian to assist with meal planning,
- eating frequent small meals,
- staying hydrated,
- assessing the risk and benefit of all treatment plans with your healthcare provider etc.
It is important to seek appropriate care and take an active role in your health. Working along with your healthcare team will help control, reduce, or prevent symptoms and complications.
“Living with gastroparesis will push individuals to look for what works best for them at different periods of their life.”
What are your plans for this year’s awareness month?
In recognition of Gastroparesis Awareness Month, IFFGD will launch a campaign to acknowledge the challenges of living with gastroparesis — symptom burdens, finding the right treatment options, and lifestyle modifications — using the hashtag #LivingWithGP on all social media channels. During Gastroparesis Awareness Month, we invite you to share your gastroparesis story and make your voice heard using the hashtag #LivingWithGP. IFFGD’s Gastroparesis Awareness Month materials include a media toolkit with statistics and key messaging to post on social media, one campaign poster, one website banner, and social media images. Please contact IFFGD if you are interested in receiving the 2022 gastroparesis awareness campaign material.
Many thanks for your time and for the interview.
Appendiceal cancer is very rare. It is estimated that approximately 1 or 2 people per million in the United States are affected by primary appendix cancer each year. However, according to recent studies, appendix cancer as such is becoming more common. It occurs more often in adults aged 50 to 55 years, but it can arise at any age. There are various types of tumors that can start in the appendix, for example neuroendocrine tumors, appendiceal mucoceles, colonic-type adenocarcinoma, etc.
On the occasion of Appendix Cancer Awareness Month, which is observed in August, we spoke with Dr. Paul Sugarbaker, one of the leading appendix cancer/pseudomyxoma peritonei (PMP) specialists worldwide. He is the Secretary General of the Peritoneal Surface Oncology Group International (PSOGI) and a pioneer of the HIPEC (Hyperthermic Intraperitoneal Chemotherapy) therapy, or the Sugarbaker procedure.
Note: The statements and opinions contained in the video and the podcast episode are solely those of the speaker.
Video Interview
Podcast Interview
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Transcript
Please tell us more about appendix cancer, its causes and symptoms.
Appendix cancer is very different from its first cousin, which is colon and rectal cancer. Remember, the appendix is a very small diverticulum that comes off the first part of the large bowel. But the disease is extremely different than colon cancer, and the reason is anatomic. The tumor in the appendix grows slowly over the course of time, the appendix makes a lot of mucus, and then you’ve got these cancer cells mixed with mucus. And what happens? You get a blowout. You get an appendicitis-type situation, but it’s not infection that causes the appendix to blow out. It’s a tumor. And it used to be, 30 years ago, when you had this rupture of an appendix with a mucinous tumor in it, it used to be that the survival was zero. Not zero, but double zero. Nobody survived. What we call peritoneal metastases are spread throughout the abdomen and pelvis.
Unknown to most people we have made huge progress in the management of appendiceal malignancy. So, as in the past zero patients survived, we’re now looking at about 75%. We’re looking at a very large number of patients with a new surgical technology; we call it cytoreductive surgery. And then there’s chemotherapy washing of the abdomen and pelvis after the surgery. We call that HIPEC or hyperthermic intraperitoneal chemotherapy. My data would show that about 75% of patients can be cured of this disease. So, there is a huge improvement in the treatment of appendiceal cancer. And I would contrast that to colon cancer, whereas the survival is now longer as a result of special treatments. In the end, the cure rate is just about the same. But we’re talking now about people who are alive 20, 25 and 30 years after the treatment of peritoneal metastases from their mucinous appendiceal malignancy.
So, the cause is different. It’s a blowout of a naturally occurring diverticulum, and its treatments have changed remarkably and the salvage is just incredibly different now than in the past. And why don’t we get more press about it? Well, because only one in a hundred colon cancers are in the appendix. So, we haven’t gotten, I think, the credit that the appendiceal malignancy patients or the appendiceal malignancy physicians should get in their new treatments for this disease.
How is it diagnosed and what are the risk factors for appendix cancer?
There are no special risk factors. No special risk factors except that everybody is at risk, just like everybody’s at risk for appendicitis. Why some people get these mucinous tumors in the appendix and then you have this blowout with mucinous tumor being spread throughout the abdomen and pelvis, I don’t know.
The first part of the question about diagnosis is pretty straightforward. For the most part, over half the people, they just get a big abdomen. They get distended. It’s often referred to as the „jelly belly“. And the jelly belly is just a buildup of this mucinous tumor within the abdomen and pelvis. Now, another rather substantial proportion of patients, about a quarter of the patients, they have an appendicitis. But, unfortunately, it’s not a routine appendicitis where you remove the infected organ and the patient gets better. It’s an appendicitis, but it is accompanied by this leakage of mucinous tumor into the peritoneal space. And so that’s the second important symptom. The third one is really very interesting, and that is a new-onset hernia. Many patients will develop a bulge at their belly button, at their umbilicus, or a bulge in the inguinal region often referred to as an inguinal hernia. And this is the mucinous tumor making its way into this small defect and expanding, and the patient goes to their physician saying, „Gee, I’ve got, I’ve got this bulge“. And the surgeon will say, „Oh, well, it’s a hernia“, and then he’ll operate. But then as soon as he begins to extract the sack, sometimes liters of this mucinous fluid will come out. And so those are the three major symptoms that are associated with appendiceal malignancy.
How can appendix cancer be treated?
The treatment for appendix cancer, this is the mucinous epithelial malignancies, is from its theoretical point of view extremely straightforward. In actuality, it’s quite complex. So, the treatment is complete removal of all visible evidence of the disease from the entire abdomen and pelvis. It sounds simple, but it’s not. Because the tumor has made its way into all of the peritoneal spaces. So, in order to do this complete cytoreductive surgery, that’s surgery to remove the tumor down to the cellular level, we have to strip the peritoneum from the undersurface of the right and left hemidiaphragm, from the paracolic sulcus, the areas on the side. We have to remove all of the peritoneum from the pelvis. So, we have these five different peritonectomy procedures.
Peritonectomy procedures were actually invented in order to treat the mucinous appendiceal malignancies and weren’t really described before that. The tumor doesn’t stick to parts of the abdomen and pelvis that are in motion like the small bowel. So, the small bowel is for the most part spared. We say it’s relatively spared. But then there’s portions of the small bowel that don’t move like the entrance of the stomach to the duodenum and the ileocecal valve region are where the small bowel connects into the large bowel and then way down in the pelvis where the colon and the rectum come together. So, very often you must combine these peritonectomy procedures with rather extensive visceral organ resections.
Not enough. You do a big surgery, it’s a big abdominal incision. Sometimes this surgery will take 12 hours. OK, you have to have a fairly strong surgeon and you have to have an even stronger patient to tolerate that. Following this complete removal, we lavage the peritoneal space, usually for 90 minutes. Now there’s a number of different HIPEC treatment regimens, but for the most part there’s a 90 minute lavage of the entire abdomen and pelvis, especially the bowel surfaces are what we call the visceral peritoneum, and we would basically wash the abdominal and pelvic spaces with chemotherapy. It’s a very diluted chemotherapy. Our goal is to get rid of any free cancer cells that have been left behind.
You know, it’s the old saying: „It’s what the surgeon doesn’t see that kills the patient.“ OK, so we’re going to try and not leave any of these mucinous tumor cells behind. So, we do the peritonectomy procedures, and that’s followed by the visceral resections, and then that’s followed by a HIPEC or hyperthermic intraperitoneal chemotherapy. Then we put everything back together and we hope against hope that we don’t have any complications. And usually we do not. We have about a 1% mortality now with this big 12-hour surgical procedure and about a 10% serious complication rate. So, we’ve learned a lot over the last 30 years. We can treat this disease very effectively.
What is the most frequent question asked by patients about to undergo treatment for appendix cancer?
Well, of course they want to know: Are they going to go through this big surgery and the chemotherapy and be in the hospital for ten days to three weeks and is it going to profit them? And so it’s extremely important that a very careful preoperative workup takes place. So, you can look the patient in the eye and you can say, based on a review of the pathology, is it a low grade, easy to remove or easier to remove, or is it a high grade, and probably these visceral peritoneal surfaces are going to be involved. You’ve got to carefully review the histopathology, and the patient should ask, and if they don’t, I’ll tell them, you have a low-grade tumor or a moderate-grade tumor. Or, you know, the appendix, a perforation can occur at any time. It can occur early in the course of the disease where you’ve got low-grade cancer, or the appendix perforation can occur later on. This is the Perforations and Mutations Hypothesis. You can have all different grades or all different invasive or noninvasive cancers.
Histopathology or what the pathologist sees on the slide is very important to us. Then, CT scan. We have learned a tremendous amount about the preoperative CT scan and which patients, based on this radiologic study, are likely to have a complete cytoreduction and have this 75% chance of being alive and well at 20 years. 75% chance of being alive and well at 20 years versus maybe only 25% if it’s a high-grade disease.
So, I think that the most important question that the patient needs to ask is: „What are my chances? What are my chances if?“ And then we also have to realize that in a disease like this, where a lot of experience and a lot of technical skill are required, maybe the patient wants to ask their surgeon and their oncologist: „What is your track record with this? How many have you done?“ And: „Have you published your results so that, you know, you have undergone a peer review of your treatments?“ And not so many groups have had the discipline to do that. So, if I were a patient, I would certainly want to ask my surgeon and the oncologist who’s cooperating in these treatments: „What’s your track record?“
What is pseudomyxoma peritonei and which role does it play in the context of appendix cancer?
Pseudomyxoma peritonei: It’s a complicated term, isn’t it? It’s stuck around because it tells us a lot. It’s pseudo, it’s kind of a pseudo-tumor. Is it like other cancers? No, it’s a pseudo-tumor. Pseudomyxoma. It’s myxomatous. It’s like the mucus that comes out of your nose, but unfortunately the mucus is contaminated by these low-grade cancer cells. Pseudomyxoma peritonei: Where is it? It’s spread all over the spaces within the abdomen and pelvis. So, it basically is involving sometimes all of the peritoneal surfaces, and we’d like it to be all those peritoneal surfaces except the ones that are in motion. The small bowel, the stomach, the colon surfaces which keep themselves relatively clean and allow us to do a huge surgical procedure, which in three months to six months afterwards the patient is back to normal because we have not had to remove large amounts of what keeps us going on this earth. And that’s the gastrointestinal tract.
You have to talk about pseudomyxoma peritonei when you’re talking about appendiceal malignancy. Remember, we said that the appendix is anatomically unique. It’s different from all of the rest of the large bowel. So, the tumor, as it mutates, and the molecular biologist, they tell us that it’s over 80 mutations in order to go from a benign tumor to an invasive tumor that can go into the lymph nodes and to the liver and then all over the body. So, what is pseudomyxoma? Well, pseudomyxoma is a blowout of an appendiceal tumor that’s just getting started. I don’t know how many mutations the pseudomyxoma will have. Probably only a few hostile mutations. Whereas an appendiceal adenocarcinoma will have over 80 hostile mutations.
Pseudomyxoma peritonei is an appendiceal tumor that has a blowout. The wall of the appendix has been breached by this appendiceal tumor. A very, very low-grade, minimally invasive and usually not invasive at all tumor. It’s just gotten itself spread around the abdomen and pelvis because it grew and it burst and it breached the wall of this very thin diverticulum that we call the appendix. Pseudomyxoma peritonei can have a huge volume of tumor, and yet with peritonectomy and visceral resections and HIPEC, we can cure about 85% of the patients with pseudomyxoma peritonei. Now, there’s one precautionary note. What really hurts us is patients who’ve had a lot of surgery but it was not completely removed, and then the pseudomyxoma gets caught in all the little nooks and crannies and scar tissue and the like. So, what’s happened prior to a definitive cytoreduction will have an impact on the long-term outcome.
Is an appendectomy recommended as a preventive measure to avoid appendix cancer? If so, do you expect that it will be possible to remove the appendix routinely during a colonoscopy in the future?
The answer to both of the questions is no. A prophylactic appendectomy just doesn’t make sense, with one exception. If you have an identical twin who has had an appendiceal malignancy, then you should have a prophylactic appendectomy. Because the likelihood that you, as an identical twin, will have that same tumor is extremely high. But the incidence of appendiceal malignancy is so low that you would have to remove literally thousands of normal appendix in order to help one person escape an appendiceal malignancy.
And then what about trying to remove the appendix colonoscopically? Well, I don’t know. I’ve done a lot of colonoscopies in my day. I don’t think I would like to try that maneuver. You can, of course, remove the appendix laparoscopically and very effectively. And a lot of surgeons will do a prophylactic appendectomy if they are in the abdomen for some other reason. Especially if you’re in the abdomen because there is ovarian cancer, because a lot of the ovarian tumors that we see actually come from the perforated appendix, and they settle out in the ovary. So, it’s a good idea for the gynecologic oncologist always to remove the appendix when they go in to deal with an ovarian malignancy.
Many thanks for your time and for the interview.
On the occasion of World Vitiligo Day, which is observed on June 25 every year, we got in touch with Yan Valle, CEO of the Vitiligo Research (VR) Foundation, at the 3rd VIPOC (Vitiligo International Patient Organizations Committee) conference in Amsterdam, The Netherlands. In the follow-up to our interview from last year, we spoke about the Vitiligo Patient Journey Map, which was published by the VR Foundation in December 2021, and about how the patient journey as such has changed in the course of time.
Please tell us more about the idea to create such a Vitiligo Patient Journey Map and for which patients you would recommend it.
Patient journey maps have been used throughout healthcare for a very long time. A traditional map describes a patient’s experience as they live through the disease in general, or progress through the particular healthcare environment. The typical journey begins with the symptom manifestation, then goes through pre-defined stages of diagnosis, treatment and follow-up for a certain disease. Essentially, it is a provider-centered view, with business efficiency in mind.
Right around the World Vitiligo Day last year I was thinking: What if we flip the map and put the patient in the center? Then, we should lay out before them every option available: from the first disease encounter to their satisfaction with results. We would have to visualize the entire landscape, highlight the best routes, indicate decision points, mark known pitfalls and put in estimated “time to destination”. Above all, it should be pragmatic yet optimistic – a kind of antidepressant for a stressed-out patient.
After five or six attempts involving three designers we have put all of that on the map, with some touch of humor. The Vitiligo Patient Journey starts, like in real life, long before the patient ever steps into a dermatologist’s office. Often prior to the proper vitiligo diagnosis, patients are exploring “Dr. Google”, chatting on Facebook or leveraging social media to evaluate their situation. Once they go past the initial shock and fear of the unknown, they start questioning the treatment process itself, in the view of forthcoming expenses and real-life outcomes.
This is where the Vitiligo Patient Journey Map becomes handy; thus it needs to be seen by patients, their relatives and friends, support groups, family doctors and dermatologists. I promoted it at this year’s VIPOC conference through leaders of vitiligo patient groups and doctors. It is meant to be hung on the wall, to draw people’s attention and to spark open discussion about different paths, treatment options and outcomes.
How and in which context can it be used by patients?
It can be used as a bird’s eye view of the patient journey, first to have a quick sense of time and direction. We see two major routes on the Map leading to totally different outcomes – I call them “Spotless” and “Beautiful” – with multiple stops, loops and hidden connections in-between, some bearing timestamps.
What would it take to get from here to there and what time would it take? Take, for example, a range of medical treatments. How much effort do you need to commit to this or that route? And that’s a very important decision to make because it may take months or even years to get to one’s destination. A scientifically minded patient can explore all the opportunities further and discuss them with a dermatologist.
In your opinion, what does the patient journey in the digital age look like?
The patient journey looks a lot more messy and chaotic nowadays than it was before. Not such a long time ago, there was just one doctor – or “polyclinic” in some places – that you would go for diagnosis and treatment. Today, patients are actively involved in their own care, yet sometimes with dire consequences.
They can get tons of free advice instantaneously, so they try to cover all the bases at once: Instagram, “Dr. Google”, friends and families. And these opinions are frequently incompatible, often none of them being right. Then, they start looking for a “health expert” – labeled Dr. Foggy on our Map – to make sense of that chaos. Finally, the wisest of them would start looking for a specialist – that we call Dr. Bright – while the rest would go around the Vicious Circle of misguided treatments, as indicated on the map, or drop out completely.
Our fully interactive Vitiligo Patient Journey Map aims to mitigate shortcomings of both the “old-school” and “modern messy” patient journeys; it will be available online later this year.
What is the difference between a traditional (treatment-driven) and modern (patient-driven) journey, how has this changed in the course of time and what should change in the future?
Most of the patient journey maps were designed by pharma or healthcare industry to demonstrate the flow of patients through stages of their product or service use. It doesn’t always take in mind what’s best for the patient. It also overlooks emotional, behavioral and lifestyle factors influencing the patient’s decisions.
Traditionally, patients had no choice or even knowledge of their options. They would come to the hospital or dermatological clinic and then they would use whatever was offered by this particular place. Today, they know that there are different options available. They request some more information before they make the right decision, but not every doctor is ready to give it to them out of own lack of experience or concern for their unsupervised self-treatment.
For example, you go to your family physician, and back in my days this is what happened. Our family doctor told us, “Oh, vitiligo is incurable. Forget about treating it”. And my parents agreed, “Okay, if it’s uncurable, there is not much we can do about it”. They have never sought a second opinion because they trusted their family physician.
Fast forward 15 years. A new family doctor told us there are different treatment options, and they were there back in those days. But I missed the proper time and it is too late for me to begin treatment now. I did it anyways, for several years, but it didn’t work for me.
With this Patient Journey Map, I want to help new patients avoid getting in the same situation. They should know that there are different treatment options available. Here are the routes, with common pitfalls and travel times. And if you feel like your family physician or your dermatologist are not experienced in vitiligo, just ask them to take a look at the map together. That’s how the decision-making landscape has changed.
What are your next goals concerning the Vitiligo Patient Journey Map and World Vitiligo Day on June 25th?
My plan for the Vitiligo Patient Journey Map is to make it interactive, zoomable down to the smallest detail. Next, our goal is to map areas with potential triggers that lead to disease onset. Being aware of vitiligo risk factors and comorbidities – it is called Dermatology Transit on our map –, patients can take precautions to prevent or delay onset of the disease.
The Vitiligo Patient Journey Map in its present form is supposed to be printed and put on the wall at the patient support group meeting, dermatology clinic, conference and so on and so forth. We have the full-size file available for download on our website. Anyone can download and print it – poster size – for the price of a fancy coffee.
The map is already translated in several languages, and there are more to come. We will have it soon in German, Italian, Spanish, French and Russian. Maps in these languages will be available for download by June 25th. And we can also customize it and put a patient support group logo on the map upon request, so all group members would feel connected through the map. We can even reasonably adjust it, to account for differences of national healthcare systems – like in the USA and UK – and for the local sense of humor.
Many thanks for your time and insight!
Scleroderma, meaning “hard skin” in Greek, is a rare autoimmune condition that causes skin and tissue to thicken and become stiff and tight. In more severe cases, other organs like the heart and lungs can also be affected. Scleroderma Awareness Month is held every June while June 29 is World Scleroderma Day – these provide valuable opportunities to raise awareness of this condition. World Scleroderma Day is held in memory of Swiss artist Paul Klee, who lived with and was strongly influenced by systemic scleroderma, and who died on June 29, 1940.
Of note, Raynaud’s phenomenon is often a common symptom of both types of scleroderma, i.e. localized (affecting only certain parts of the body) and systemic scleroderma, which affects the whole body.
On the occasion of both Scleroderma Awareness Month and World Scleroderma Day we spoke with Sue Farrington, CEO of Scleroderma & Raynaud’s UK (SRUK).
In scleroderma, no two patients are truly alike. Why?
Scleroderma is a rare autoimmune condition that affects around 19,000 people in the UK and 2.5 million worldwide. Everyone’s experience of scleroderma depends on what type they have, how severe it is, and what parts of their body are affected.
Scleroderma occurs when the immune system becomes overactive and starts to attack healthy tissue in the body, causing hardening of the skin and affecting joints and, in more severe cases, internal organs. Scleroderma can also cause scarring that can stop parts of the body from functioning properly.
There are two main types of scleroderma: localised and systemic sclerosis. Localised scleroderma only affects the skin whereas systemic sclerosis is more severe and can affect other organs such as the heart, lungs and digestive system. In the most serious cases it can be life-threatening.
This is why it’s vital that people with the condition receive good information, support and care tailored to their own condition and experience.
“Scleroderma occurs when the immune system becomes overactive and starts to attack healthy tissue in the body.”
On your website, the motto “#KnowScleroderma – Educate, Engage, Empower” is given. Why are these pillars important?
As scleroderma is a relatively rare condition, public awareness is low. Many people don’t know the signs and symptoms to look out for, what to expect once they’ve been diagnosed, what treatments are available or how the condition could affect them in the future.
Scleroderma may be uncommon, but it can be a life-changing condition for many, so it’s crucial that everyone gets the information and support they need to continue to live well and help them make informed decisions about their care.
As a charity dedicated to supporting people with scleroderma, SRUK seeks to
- educate the public by raising awareness of the signs and symptoms
- engage with people through our Helpline, website, webinars and other online activity so they can access information and support, and
- empower those who are concerned to seek a diagnosis, ask questions and self-manage their condition better.
“Scleroderma may be uncommon, but it can be a life-changing condition for many.”
What is vital for the (timely) diagnosis and treatment of patients with scleroderma?
Early diagnosis and treatment of scleroderma cannot be underestimated. The condition often affects the body before symptoms appear, and any damage to the body that occurs before treatment starts is irreversible.
However, for many people it can take up to five years on average to receive a diagnosis. This is largely due to a general lack of awareness of scleroderma among healthcare professionals, inconsistent access to specialist care and problems with the coordination of care across different healthcare teams.
We are working to close this gap by funding research to improve diagnosis as well as treatments and quality of life for those with scleroderma. We also engage with leading healthcare professionals to share information, advice and best practice to the wider workforce.
“Early diagnosis and treatment of scleroderma cannot be underestimated.”
What can patients, their caregivers and their loved ones do when they are or someone close is living with scleroderma, for example regarding their quality of life?
Once someone has received a diagnosis of scleroderma, the first thing I would recommend is not to search for information on the internet. Not all information online is accurate, and it can do more harm than good.
For reliable and trusted information about scleroderma, visit our website. You will be able to find out more about how the condition is monitored, how it can affect the body and the treatments available. There is also a section to help people manage their condition, including the importance of a healthy diet and getting enough sleep.
Scleroderma can affect both adults and children and due to the nature of the condition, it’s important that others are aware of the impact it can have, both physically and emotionally.
With this in mind, we have produced helpful guidance for both schools and employers to help them understand what scleroderma is, how it can affect people at school or at work, and what their responsibilities towards their students or colleagues are. These can be downloaded here.
What are your plans for the upcoming Scleroderma Awareness Month as well as World Scleroderma Day on June 29?
During Scleroderma Awareness Month, we will be raising awareness by sharing stories from people who are living with the condition or have loved ones with scleroderma. We have some very moving and inspirational stories from our community, which we will be sharing across traditional and social media.
We will also be encouraging the public to support us by getting involved with the SRUK Walk – a month-long fundraising campaign where we ask people to organise a walk and raise funds. It’s their walk, their way, to help us make a difference to everyone living with scleroderma and Raynaud’s. You can find out more by visiting our website.
Many thanks for your time and for the interview.
This year, June 16 is World Kidney Cancer Day (WKCD). It is a day when the world’s kidney cancer community joins together to raise awareness about major issues affecting kidney cancer patients and their caregivers. For its current edition, the focus is on talking about treatment options for kidney cancer patients.
For World Kidney Cancer Day 2022 we got in touch with Anne Wilson, Board Member of the International Kidney Cancer Coalition (IKCC) and responsible for WKCD on behalf of the IKCC.
Please tell us more about the reasons of the International Kidney Cancer Coalition to initiate World Kidney Cancer Day in 2017.
World Kidney Cancer Day is celebrated around the world every year on the third Thursday of June by patients, carers, healthcare professionals and local organisations. World Kidney Cancer Day was established to have a day dedicated to raising awareness of the local and global impact of kidney cancer, educating people about the disease and making a difference in the lives of people with kidney cancer.
Despite the significant effect kidney cancer has on patients and healthcare systems around the globe, in many countries it is a little-known type of cancer with many unanswered questions related to prevention, risk factors, and treatment practices. Greater awareness can help drive the changes that will make a difference in the lives of people currently affected by kidney cancer.
This year’s motto of the awareness day is “We need to talk about treatment options”. Why?
The theme was chosen to help create more and better conversations between patients & caregivers and doctors about treatment options. The campaign is grounded in studies, including the IKCC Global Patient Surveys, that show patients and doctors aren’t discussing available treatments. This includes participating in clinical trials, which most patients would seriously consider, but few are ever asked.
However, when people are more engaged in their care and treatment, they experience a better quality of life and an improved quantity of life. Giving patients the time to ask questions and making the effort to inform, educate and consider patients’ values will lead to improved outcomes overall. That’s why we need to talk about treatment options.
Which role do clinical trials play in the treatment of kidney cancer patients?
Clinical trials have driven all advances in kidney cancer, and the last 15 years have been transformational. From new therapies to treat metastatic disease to improving surgical and surveillance techniques of localised disease, new ideas are tested, and when proven, move into standard of care.
It is a core belief of IKCC that every patient deserves access to the highest quality care and the opportunity to participate in research through clinical trials. That also means it should be offered as an option for the first, second or third line of therapy.
However, we know from the results in the IKCC Global Patient Survey 2020 that the majority of patients are not being asked to participate in clinical trials, despite their willingness to participate if asked. Specifically, 69% of patients surveyed had never been asked to participate in a clinical trial. Yet, of those, 65% said they would have participated if they had been asked.
What is most important for those living with kidney cancer, and what are currently the unmet needs of patients?
That depends on the stage of the kidney cancer. For people living with metastatic or advanced kidney cancer, the major unmet need is that there is still no cure. Only about 10–14% of people on systemic immunotherapy will go on to achieve a long-term response, and we still do not know if the cancer is cured. For the remaining 85–90% of metastatic kidney cancer patients, we need to address ways to better manage the disease so that they are living life to their fullest.
For patients whose kidney cancer is discovered early enough so they can undergo surgery to have their tumour removed, the major unmet need is improving how we detect recurrence of disease. This is significant because about one-third of patients experience a recurrence. Currently, we take expensive imaging scans of the kidneys at random intervals for 5 years, but plenty of patients have a recurrence of their cancer after 5 years. We need an inexpensive way to find recurrence – for example by detecting biomarkers in a blood sample taken at a local clinic – so patients could be screened more frequently and for a longer time after surgery.
For all kidney cancer patients, regardless of stage, treatment options should be provided within the framework of shared decision making including participating in clinical trials. For some countries, where the number of options may be limited, we would like to see robust access to whatever treatment is possible.
What are your plans regarding the upcoming awareness day on June 16?
All global activities for World Kidney Cancer Day can be found at the campaign’s website. There you will find the digital campaign in 14 languages that will drive people to a range of resources including “The six questions every kidney cancer patient should feel able to ask their doctor”.
On 16 June, IKCC will host a landmark global webinar, “Talking Treatments”, where clinicians, patients and caregivers will discuss the opportunities and challenges of making every treatment decision a shared decision, and answer questions both posted in advance and asked on the day. Registration for the global webinar is available here.
Many thanks for the interview and for your insight!
Cancer Survivors Day is an annual celebration of those who have survived any type of cancer, a support for those who have been diagnosed and an outreach to families and communities. In essence it is a celebration of life. It is a day for cancer survivors, their families, friends and medical professionals who help treat and go through the treatment process with their patients. It is also an opportunity to highlight the challenges and struggles that those with cancer and those who are in remission go through.
For this important awareness day, which is observed each year on the first Sunday in June, we turned to Michael Nodes, survivor of testicular and prostate cancer as well as father of a Karger Publishers colleague, to hear about his experience of living with and surviving cancer.
Do you remember the first thought you had when you were told your diagnosis?
Yes, I thought “oh shit”. I couldn’t really remember anything else, I was in shock really.
Has your diagnosis made you look at life differently?
Yes, I think so. I live one day at a time and try not to worry about the future. I used to always worry about the future.
Did it take much toll on your mental health?
Yes, at times it did. Profound anxiety and depression. It was definitely on my mind. I went on holiday to Paris with my daughter the year I was diagnosed with prostate cancer and, having thought I was in the clear having had the testicular cancer treated, I couldn’t believe I was back in that mind space again.
What surgery/treatment did you have and how did it affect you?
I had surgery in 2017 to remove the testicular cancer, and the recovery process was quite painful. I couldn’t really stand or sit for a fortnight. And then I had one dose of chemotherapy and had to be careful to avoid infection. I’m a teaching assistant and I couldn’t go back to work for three weeks after the surgery and then another three weeks after the chemotherapy. Luckily, I have a very understanding boss and I was able to take time off without worry of no salary due to absence.
I was diagnosed with early prostate cancer in 2018 and I had to go in everyday for a month to have radiation therapy at a hospital forty miles away from my home. That’s one and a half hours’ drive there and an hour and a half back. So, I had to be off work for another month. The main side effect I had was inflammation of the lining of my bowel but luckily nothing more serious. Now every three months I undergo a series of hormone injections in order to make sure the lymph node that is enlarged does no longer contain any cancer cells, and if this should be the case that these don’t spread. The injections made me feel tired and achy, with hot flushes and a definite increase in weight. But it’s all worth it as in 2019 my test results showed that the prostate cancer hadn’t spread, and the testicular cancer had not returned.
What would you say to someone currently undergoing treatment?
Listen to your doctors and don’t worry about the future. There’s a lot none of us can know about what will happen. After my testicular cancer diagnosis, all I wanted to do was stay in bed. I didn’t really want to admit to myself what was happening. But I realised I couldn’t be in denial forever because that wouldn’t solve anything. I shouldn’t waste any time wallowing away doing nothing. I needed to enjoy any time I had left and live every day to the fullest. Now I’m back at work part-time so I can spend more quality time with my family, and I volunteer as a Samaritan and mentor new Samaritan volunteers. I’m very lucky to be where I am now and in the state of health and mind I am.
I’d like to take this opportunity to thank all the doctors and nurses who took care of me and supported me through this process, and my colleagues, friends and family who have always been there for me.
Many thanks for your participation and insight!
Bladder cancer affects all ages and is a very common cancer, e.g., it is one of the ten most common cancers in the UK. Bladder cancer has a high mortality rate and shows a very high recurrence rate.
For Bladder Cancer Awareness Month, which is held each May, we spoke with Jeannie Rigby, Chief Executive of the charity Action Bladder Cancer UK (ABC UK).
Please tell us a bit about Action Bladder Cancer UK, i.e., its inception and goals.
ABC UK was set up in 2009 by a group of patients and clinicians as a UK-wide bladder cancer charity. We work to get bladder cancer recognised as a common cancer and the level of acknowledgement, public awareness, new treatments and research investment which it merits – and which those with bladder cancer deserve.
The charity’s board includes both bladder cancer patients and specialist clinicians. Our ABC UK team includes core and project staff and trained volunteers (all bladder cancer patients). We work closely with many bladder cancer specialists within urology, scientific research, cancer nursing and general practice. Our patients provide the insight of direct experience and also actively contribute to cancer advisory panels, research committees, clinical trials, support groups and regional cancer networks.
We deliver our vital work under 4 charitable objectives: to raise awareness of bladder cancer and the related issues; to support patients; to improve outcomes for patients; and to fund and encourage research into bladder cancer.
“We work to get bladder cancer recognised as a common cancer and the level of acknowledgement, public awareness, new treatments and research investment which it merits.”
What can be done about bladder cancer regarding empowering patients and the everyday challenges of living with bladder cancer?
Patients need the right kind of support and information. We take great care to ensure that we provide high-quality information and direct patient support to help patients at the appropriate stage in their treatment journey.
Patients need better support at certain, difficult times. This may be helping patients to make the difficult choices between undergoing Bacillus Calmette-Guerin (BCG) treatment or having their bladder removed or helping patients to deal with the many challenges when adapting to living with a urostomy. For example, we have developed patient support materials working with a group of patients who have undergone a cystectomy (bladder removal), collecting their own experiences and tips on how to live with a urostomy and running online and face-to-face sessions for those who have recently had their bladder removed.
Providing someone to talk to at those difficult points, such as just being diagnosed, making treatment decisions or facing difficulties in adjusting to life after removal of your bladder, can make a big difference. This is why ABC UK works to set up bladder cancer patient support groups, run patient events (both online and face to face), and provide direct patient support – putting people in touch with another patient who has gone through the same experiences.
Also, a very important aspect of empowering those with bladder cancer is by giving patients a voice – bladder cancer is neglected, and there is much work to be done on raising the profile of this common cancer, both with the public but also by lobbying government, medical research bodies and decision makers.
“Patients need the right kind of support and information.”
In your opinion, what are the overlooked needs of patients with bladder cancer?
There are few treatment choices for those with bladder cancer and, in the majority of cases, patients are still faced with the same, limited, treatment options as decades ago.
Bladder cancer is overlooked in terms of research investment, and this shows in these limited treatment options, and also in testing and diagnosis.
Many patients are faced with cystectomy (bladder removal) – which is major surgery with a profound impact on your daily life. New bladder saving treatments are badly needed. Whilst there are some exciting developments in new immunotherapies and targeted therapies for treating bladder cancer – most of these are still at the clinical trial stage.
There is a need for a wider network of support – existing patient support services within hospitals and the wider community provide little for someone with bladder cancer. Many patients come to us for this help, having found no information or answers to their questions elsewhere.
Finally, although this is probably the underlying reason for many of the issues I have mentioned: We need a wider acknowledgement of bladder cancer as a common, and overlooked, cancer – one which has poor patient outcomes and relatively little research investment.
“We need a wider acknowledgement of bladder cancer as a common, and overlooked, cancer.”
Please tell us more about the Patient Decision Aid that you devised. What was the reason for that?
The ABC UK Patient Decision Aid provides information about the most common treatment options available for those patients with high-risk non-muscle-invasive bladder cancer.
As these treatment choices are limited, patients with this type of bladder cancer, faced with the prospect of their tumour perhaps becoming invasive, often have difficult choices to make. The main options are usually treatment directly into the bladder: most commonly immunotherapy with Bacillus Calmette-Guerin (BCG) (or possibly mitomycin C chemotherapy) or cystectomy – surgically removing your bladder, and often other related organs, completely.
This particular decision remains a difficult one and ABC UK are frequently approached by patients or family members, through our direct support service, asking for advice and information at this challenging stage of their treatment.
In response to this need, ABC UK worked with patients and clinicians and produced this unique decision aid in 2019 – updating it this year to reflect varying treatment practice.
It is designed to help patients have a discussion with their clinical team about what’s best for them personally, taking account of overall health as well as their cancer grade and stage. It’s not intended to make those decisions for a patient, but to give the information that will help them think about the effects each option may have on their life, and help them to have these conversations and understand the best way forward for them. It can also help patients talk to partners and family members about a difficult topic. It’s proved to be an extremely valuable resource and is part of our range of ABC UK patient materials in print and online.
“The Patient Decision Aid is designed to help patients have a discussion with their clinical team about what’s best for them personally.”
Why is raising awareness of bladder cancer so important?
Over 20,300 people are diagnosed with bladder cancer in the UK every year. Globally, over 570,000 are diagnosed every year.
It is not a rare cancer – it’s one of the ten most common cancers in the UK, but it does have the profile and level of awareness of a much rarer condition.
We get told again and again by patients that the first they had heard of bladder cancer was when they were diagnosed. Bladder cancer has a profile of poor outcomes and high recurrence levels – and can often be diagnosed late. It can be hard to diagnose and can sometimes be mistaken for something else (particularly in women, where symptoms can be confused with urinary tract infections (UTIs) or other gynaecological conditions).
People need to be aware of the symptoms – to take action and consult their doctor if they see anything different. There can also be a reluctance to talk about any problems with the urinary system, so we need to get the message across that if you see blood in your urine (even just once), are being treated for persistent UTIs or notice anything unusual, you need to get it checked out.
May is Bladder Cancer Awareness Month – and ABC UK is joining with bladder cancer organisations worldwide to raise awareness of the symptoms. The theme is: “Don’t Go Red – Go to a Doctor.” In other words, don’t be embarrassed to talk about it. It may not be bladder cancer, but don’t take that risk – take action.
Many thanks for your time and for the interview!
