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.