Sam rewinds to last year’s Big Bowel Event, resharing a session called PaRT Life. In this session, three members of the PaRT network discussed their patient experiences and their experiences of getting involved in research. The members are Steve Clark, Alicia Cropley, and Nigel Horwood. Sam also provides details on the upcoming Big Bowel Event 2024, taking place online on 22nd August.
Register for the Big Bowel Event 2024.
Watch the Big Bowel Event 2023 on YouTube.
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra Rose. I’m the Patient and Public Involvement Manager at Bowel Research UK, and as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Hi everybody, it’s August 2024 and we’re gearing up for Bowel Research UK’s next Big Bowel Event. The Big Bowel Event is an annual event for patients and the public to find out about the latest research into bowel cancer and bowel diseases. This year we’re hosting it jointly with the Royal Society of Medicine. It’s a virtual event on Thursday 22nd August at 1pm-4.30pm. We’ll have three sessions – one on diverticular disease, one on the gut microbiome, and one on surgical and interventional science which includes talks on faecal incontinence and robotic surgery. Each session includes two researchers talking about their work and one patient advocate telling their story. I’ll put a link to the event in the show notes so you can find out more and sign up. It’s completely free.
So on today’s podcast episode, I would like to do a bit of a rewind to last year’s Big Bowel Event. I’ll put a link in the show notes where you can see the event because that was also virtual and the whole thing is available on YouTube. Last year we had a session called PaRT Life, where people in the PaRT network discussed their patient experiences and their experiences of getting involved in research. So today’s podcast episode is a listen back to the three speakers in the PaRT Life session – Steve Clark, Alicia Cropley and Nigel Horwood. Enjoy!
OK, we are back. Hope you’re all sitting comfortably and welcome to PaRT Life: Tales of Patient and Public Involvement and Engagement. So we have talks from three members of our patient network on their experiences of patient and public involvement or PPI. Our patient network is called People and Research Together or PaRT and the PaRT network is a group of patients and members of the public who get involved in research into bowel cancer and bowel disease through things like focus groups, surveys, reviewing documents and so on as people with lived experience. You can join the PaRT network yourselves using the QR code seen on this slide and others throughout the day. So please type questions for any of our speakers into the chat or the Q&A and they will be asked during the Q&A at the end of the session. There will be one Q&A after all three speakers have spoken, so one group, one at the end, so please do indicate who your question is for, just to make it easier for us when the time comes. And I’m going to stop sharing this slide and I’m going to introduce our first speaker. So our first speaker is Steve Clark. Steve was diagnosed with stage 4 colorectal cancer in 2013 and has since become an active patient advocate. He is a regular speaker for audiences of patients, healthcare professionals, researchers and industry representatives, as well as volunteering with charities. In 2017, he set up striveforfive.org, which is a not-for-profit organisation, with the mission to give hope to fellow patients with stage 4 cancer and to advocate for improved care for those with our parents to cancer. Steve also provides support for fellow cancer patients via strive for five and several Facebook groups where he’s a group expert. He is a business and marketing consultant for the Pharmaceutical industry and has worked in UK and global pharma for over 35 years in business management and global marketing. So Steve, over to you.
Steve
Thanks, Sam. It’s quite a big intro, isn’t it, that? Sorry, I need to need to send you a shorter bio, I think. So I’m hoping you can now see the screen.
Simon (Simon Watt of WEISS, UCL, providing support on the day)
Everything is working Steve. Thank you.
Steve
That’s great. Excellent. So good morning, everybody. As Sam said, my name is Steve Clark and during this presentation, I’ll give you a little bit of background on things that I’ve done in terms of patient involvement and patient engagement, but Sam’s asked me to start it off with a bit of an introduction on things, so I’ll take you through in that respect and just 15 minutes total. So first of all, obviously have to introduce myself. My name is Steve. I love travelling the world, teach yoga, sometimes sing with a band quite badly. Mixed martial artist, et cetera, et cetera. And I have stage 4 colorectal cancer and that’s the order of priority in my life. It’s, this is something that is happening to me. Stage 4 colorectal cancer is not who I am, and I think it’s something I have to be really careful of not to say to you “Hi, my name is Steve. I’ve got cancer.” The good news that I’ll put around it, I mean, hearing from Alicia with the fact that she’s coming up. She’s coming up on her five year mark. I’ve just passed ten years with stage 4 colorectal cancer and the picture of me singing there is at my tenacity party, celebrating 10 years, so that’s just to reassure people that because of the wonders of research, we are getting better and better successes in treating bowel diseases, including bowel. Answer. I wear many hats and I’m not going to go through this in depth, but just to give you a bit of background. So my pure background is science biochemist. I’ve worked in the pharma industry for a very long time, but I also have a lot of experience through having cancer, working with other patients, running Strive For Five. Involvement in a number of charities, involvement in a lot of strategy level work at places like CRUK and I’m also involved in a number of studies as patient lead, real world evidence studies, preclinical work as well as clinical. So I’ve got lots and lots. Patents and because of the work I do interacting with patients, I get to speak not just on my experience, but actually on literally thousands of patients that helped to support and been involved with over the 10 years.
So moving on to the meat of the presentation, then the patient involvement, patient engagement, I thought it was worth starting off with explaining some of the terms because there’s a lot of, there can be a bit of confusion around this cause there’s a lot of words that can be used that are similar but different and that sort of comes in largely here. So a lot of talk comes out these days on patient centricity and patient centricity is something that’s more used in the pharma industry and the medical community. They talk about being patient centric and what they do is patient centric and it’s nothing wrong with it as a term, but it’s also can be an easy one to cop out on. Because you quite often see slides with, “these are all the things we’re doing” and in the middle of it, they put a picture of a patient and say it’s all about the patient, but they’re not necessarily working with us about what they’re doing. Likewise, patient involvement is a step further forward, but patient involvement could literally be “we’ve just prepared this entire programme”, show it to a patient. “Is this OK with you before we go live?” That’s not working with us to develop them and likewise you can get patient involvement in the same way in research where a study has been fully developed and even ready for publication. And you ask for the patient input to the lay summary and that’s still classed as being patient involvement, but really that’s not a proper working with us. That’s where the terms integration, patient integration, patient engagement coming more. That’s where we’re part of the organisation, part of the project. And we can be involved literally from the concept. And that could be a clinical trial in terms of research. So how are they gonna? What are they looking to achieve? What are the outcomes they’re looking for, how are they going to recruit? And there is data to show that actually involving patients in designing studies makes the studies far more efficient. There are less changes and so therefore the results come through much quicker, et cetera. And patient engagement is where that where we get real meat of it. That’s where we’re partners, we get to work really, really closely. And there is another term that’s sometimes used in this area, which is patient inclusion, but I think that can, again nothing wrong with it, but it can cause confusion when we’re looking at research when we’re looking at inclusion criteria as to whether or not someone is appropriate to be recruited as a patient within the study. So all of these things we’re talking about working with us on designing studies, designing educational programmes and helping to develop them so that when they do come to patients or to doctors, they’re much more patient centric, much more patient focused and they’re aligned more with what we’re looking for. I should say there’s nothing wrong with any of these terms. They all work. But I think there are nuances to each of them, so I hope that setting the stage has helped a little, and perhaps to bring that home a little bit, there are two lines that I like to use. It’s about working with the patient and thinking about us as a person rather than as a subject to poke and prod. Basically. And it’s about talking with us not talking about us and I think that’s where we’re looking at things and that’s a lot of the sort of things that Sam’s talking about with in part is where they’re talking with us rather than about us.
I do some work with Cancer Research UK and this is a slide that I’ve lifted from them that also helps to explain that I mentioned, you know, consultation, that’s where if you like the entry level of engaging with us, that’s where they could be doing a study protocol and just saying just “do you like that?” Generally speaking, it’s later stage as I said, and even programmes, there’s a project that came to me yesterday from another charity saying “we’re going live with this on Monday. Do you think this is OK?” That’s a consultation. Nothing wrong with doing that. But it’s not as good as collaborating with us as patients and that’s where they actually work with us on what it’s going to be and ultimately partnership. And there’s a number of projects where I and I think this year and Nigel will be speaking shortly, we’ll be able to talk through their experience as well. I’ve, there’s a number of studies I’ve been involved in a number of big projects where I’ve been involved in designing it right from the outset, and there’s a big global project I’m involved in, where actually the concept came from a presentation I was giving and it’s built up from there. That’s where partnership really works. And this is the modern life. This is where the patient really adds value. And this is a big change. In the last five years where the medical community and all the charities are starting to see the value of us as partners working alongside them, helping to develop, to deliver much better projects. Some examples on this and this is, this is not an exhaustive list, but I just wanted to give you a bit of a feel for some of the things that we can be talking about shortly, I’m sure. And Nigel will talk more about the research side things I think, and so I’ll talk about some of the other things. So you could be, as a patient involvement, you could get involved in some of the forums. That could be either actively being on the forum and helping to support other patients, down the bottom right hand side. They’re actually volunteering and helping to moderate the forum. So that’s very much more involved. You could be speaking for the charities or volunteering for the charities in various ways, doing things like this. The PaRT network that Sam talked about. So we’re involved in campaigns, we’re involved in big projects or helping to run events, volunteering where different charities have got shops, etc. So there’s lots of different ways of being involved as a patient and adding more value and helping ultimately other patients.
And focusing on the research side of things, this is just one slide to give an example on this. And this is based on a talk that I gave for Cancer Research UK and Cancer Research Horizons. Patients can be and should be involved at all points of research. So right at the very start, when you’re starting to come up with the concept of a study or the concept even of a drug that’s being discovered, are we looking at the right thing? Is this something that patients are needing helping to design the studies and work at every stage all the way through, including communicating the results and that’s, you know, presenting it on webinars, presenting as part of the team at conferences and congresses, et cetera. So we should be and are increasingly involved at lots of stages along the way.
So this is the bit where I say get involved. How do you get involved? It sounds very easy, doesn’t it? Say volunteer contact, but actually there’s no obvious glowing route for us into patient involvement. And so I’ve tried to summarise here some of the entry points that I’ve found have worked and that hopefully will work for you. The charities like Bowel Research UK are a good example, so you can contact the charities directly and they will have ongoing projects where they may be looking for patients. I will say this can be it depending on the charity, this can be really easy or it can be quite difficult. There are some charities where it’s actually taking years for me to get involved with them and others where as soon as we’ve got to know of one another, things have happened instantly. Bowel Research UK is an example. I was presenting at a meeting in Liverpool back in June and that was the first time Bowel Research UK and I met effectively, and here I am now speaking for them. So it can work. And the way that you can get into a lot of the charities other than through meeting at meetings is through their websites, Bowel Research UK and Cancer Research UK both have portals that help you to find the right sort of projects, but also with both websites you have to search for it. You have to find your way in on Bowel Research UK, you’d expect to be get involved is where you’d find the PaRT projects, but actually you have to go in through the For Patients section and get to different things. With Cancer Research UK you go through Getting Involved. We have to swirl through lots and lots of things about general involvement before you find that the stuff specific to patient involvement. With both of those charities, you can also register to be to be informed when there are new things coming through as well, and I found that very, very helpful.
Your local hospital actually will have, or should have I should say, opportunities for you to get involved. There are more, more hospitals, NHS, hospitals that are setting up patient panels. And that’s to try so that they can hear more about what they’re doing, what they’re doing wrong, if they’ve got plans for improving their services, then they’re more often going to patient panels and asking for advice as to how they set up the service. So if you contact the local hospital, you should find if they’ve got their own panels there.
Clinical studies, being involved in studies by this I’m not talking about being a patient in a study, having the medicine tested on you, I’m talking about helping to advise on how the studies are run. Bowel Research UK is a great organisation for that and you’ll hear throughout the day some of the things that have been done. But you can also ask your oncologist if they know of any things that are going on or the charities in general will have some opportunities to be involved in research. And the letters to look for sometimes on that are PPI, which is patient public involvement, and quite often you’ll see recruitment for PPI panels. And that is often around good educational programmes or clinical studies. And the other one I mentioned this on the previous slide about patient forums. So a really valuable thing for patients to do is to support other patients and I found it really uplifting to be a member of a number of forums where you hear patients coming on asking questions. Perhaps they’re early in their journey with the disease and then you see other patients sharing their experience and that’s helping. It helps not just the patient. That’s the first question. But it does help to be part of that sort of community. But I will say some of the charities have forums up through their websites. Bowel Cancer UK has a very good one. Some of them it’s through Facebook forums, but I will say not all Facebook forums are equal, so the independent ones are excellent. But do your own research on them before you align too heavily with them because some of them can be quite scary places.
But hopefully that gives a nice sort of overview of some of the ways that you can get into it and so my last but one slide is I was asked to give some examples of my patient engagement and these are recent projects and things I’ve been involved in fairly recently over the past year and ongoing projects. So the first one is Strive For Five, which Sam mentioned at the start. That’s the project that I set up several years ago. Actually, originally just to tell my story as a stage 4 patient, moving towards the five year mark to share that it was happening, but the response that I got was really quite marked and it showed me that there wasn’t a lot of good news stories and sharing positivity about stage 4, bowel, stage 4, cancer in general, not just bowel cancer. And so Strive For Five evolved more into living life with stage 4 cancer. So it’s an online presence. You’ll find the website StriveForFive.org. There’s videos, podcasts, blogs, tips, etcetera all aimed around helping people with stage 4 cancer and helping put them on the right track. I speak for various organisations. For Cancer Research UK I’m the campaigns ambassador, so involved on the political side of things and insights panel member helping on my strategy, I co-author of some clinical studies and three whitepapers. One has just been published and two in development. And I am very proud of the one that’s just been published. So it’s my first whitepaper, so I’ve got to see about this a little bit. Not as big as Sam’s book, but it’s for me a personal landmark. And this one’s a topic that I was really interested in. And this is where an idea I had stimulated a big project to working with a psychologist. It’s delivered presentations, a whitepaper, and there’s more work coming out of it and this is it. So if you would like to have a look at it, you can find the link through the website striveforfive.org. I do direct support on patients I mentioned through the different forums, but also with Strive For Five, patients can contact me directly via social media and so they can ask personal questions and getting in touch and I’ve been able to give direct support over the years to a lot of patients and I find that personally very, very rewarding. Patient lead on a global project on communication. We’re looking to change how oncologists communicate with patients that links with the first speaker very much. And so that’s a project that actually starts to launch tomorrow, presenting tomorrow afternoon on that. And the last one on the list is I’m one of two patients working with the British Society of Gastroenterology on their new colonoscopy guidelines. So a lot of these things come about through me directly contacting groups. A number of them these days are because I’ve been around and chatting about this sort of thing for ten years. People contact me and say would you like to be involved? But that just gives you some idea of some of the things that, that, that I’m doing and involved in and some of the ways that perhaps you could be involved. And help other patients.
So on to my last slide. This is just bits of advice. And again, I think you had some of the advice earlier. So getting into it, I think you have to be persistent with some of the charities to get involved in them. They tend to have little groups of patients that they work with and sometimes they don’t really understand necessarily the value of patient involvement. But you would, like the phrase, polite persistence with them, make sure that they know that you’re still there. And still interested. And it does reward you in the end. Always trying to represent more than just your personal experience. So trying to represent more patients because that adds value to what you’re doing. If you if you imagine, if you’ve been on some of the forums for example you’ll hear different stories, you can assimilate those stories and relate to them when you’re parts of these panels are involved in different projects.
But then the last two points I think are important. It’s very easy with severe disease. We’re talking specifically bowel disease in general here. It’s easy to become lost in the disease. So whether it’s your, your disease, what you’re going through or the work around it. And so I think it’s really important to say make always make sure that you are well. You’ve got to look after your own health and your own wellbeing first and so don’t overdo it. Don’t have too many things going because you can, I have at various points by myself drowning in it and keep a balance in your life as a whole. Try not to allow your life to become too dictated to by the disease. And that links to that first slide of mine where I said this is what I’m about. These are the things I do, you know, family, travelling and all that sort of thing. I happen to have bowel cancer. It’s not the focus of my life. And so with that, I hope that’s been interesting and informative and I’ll hand back to Sam to take on to the next speakers.
Sam
Thank you, Steve. Keep the questions coming in for Steve. We’ll go through them at the end. I’d like to invite our next speaker, Alicia Cropley. Alicia was diagnosed with Crohn’s disease 20 years ago. She is a recently retired senior museum curator who has lectured and written on art and architecture. Alicia over to you.
Alicia
So I’m absolutely delighted to be part of this day. Thank you for inviting me. And I’m very aware I’m just one of many people who will be participating today and listening in with the bowel disease. I’ve never spoken in public about it, so I’ve lectured on art and architecture as was mentioned, but here goes. I hope to give you an idea of what it’s like to live with Crohn’s disease as a patient. Many of you will know that experience. To talk a bit about my research involvement, which is very lightweight in comparison to our previous speaker’s. And then to talk a little bit about promoting wider awareness and understanding, because I think that’s a really important contribution that people with Crohn’s and other diseases like that can make.
So as mentioned, I’ve had Crohns for 20 years. All through that I’ve been juggling work and two children who were then very young indeed, one and three I think. So same concerns as our first speaker about that. I’ve had all sorts of medications and tests hospitalised twice incidentally. Once ended up with steroid psychosis so look out for that. Ask about that if you’re on steroids. And a very positive thing I have to mention my immense gratitude. And again, I think that’s a really healthy way of approaching any of these horrible diseases. Just trying to focus on things you are grateful for and these are just two in the context of bowel disease, NHS, I’m just very lucky. I’ve got a very good consultant, a good gastro team. I live in London. There’s a lot of support for that. Very grateful to Crohn’s and Colitis. I think they’re a terrific charity. Previously, the NSCC. Providing information, so do get on to their website if you don’t know it. They support all sorts of research and individuals, and I think their education campaigns have been really helpful, so not every disability is visible. Thank God for that. If you want to go to the loo quickly, people are now much more aware that that is an issue. And ongoing just a bit, finishing off really about me fairly quickly. But yes, living with active and sometimes chronic disease is as many of you know pretty tough sometimes. I dread eating out. I used to love eating out in restaurants with my husband and so on, and but particularly with friends. And if anybody says I’m a fussy eater, that is just a red rag to a bull, just very unpleasant, unkind. But turning the pain into a positive, I think it’s really helpful to assist with research. And to raise awareness and understanding.
So this is literally a snapshot taken in my kitchen of some of the medication that you will have all probably come across and the dietary things, Modulen and Fortisip sort of keep me going on a bad day. I’ll pop a bottle of Fortisip into a bag. And then all of these different pills injecting yourself, there’s a lot involved and with flare ups, of course you might be on steroids, but I think with all of these involvements as a patient you can talk about medications. Lots of people will know about these. Incidentally, that picture is no longer up to date. There’s another one that’s just come out. You can talk about the physical aspects though. And I think only those with these horrible diseases really understand the pain, the bloating, what it’s like to have to inject yourself, get used to that, remember to do it, the horrible bloating, some of your favourite clothes not fitting. The fatigue, which is quite difficult to quantify. And directly attribute to it. And then of course, as everybody said, the psychological thing which I think is really, really important to convey the embarrassment, the anxiety feeling low and anxious. So an overview of my research involvement as, as Sam mentioned, the focus groups. So Bowel Research UK regularly does these and I think you can give really good insights on to what flares are like, taking the medication and so on, discussing what it’s like actually living with these diseases, conveying what the impacts of that are, how it affects you day to day. And then the other part is of course assessing tech. So I’ve done it a lot at work, but normally on art and architecture, sculpture and so on. But looking at abstracts and proposals, a thing I’ve got a bee in my bonnet about is they don’t have to be scientific if they’re aimed for patients. I’ve got this disease, but I’m not a scientist. I didn’t really do much biology, so please make all your texts as simple and clear and well structured as possible if you’re on that side. And then some specific projects. So the number three I’ll talk about on the next slide. That was in detail the viability study, which was a commercial development and then there’s an ongoing one at the moment actually which I think is really exciting about the potential of AI. How that can assist in colonoscopies, particularly not replacing a human being. I think we all in the group thought it’s still lovely to have somebody looking after you, but actually helping them spot these horrible things inside you.
So the case study, this is an interesting one. So it’s developing blood tests as inflammation biomarkers even that’s getting quite scientific, but as early indicators of IBD, so are trying to pick this up early on. But I started asking as I always would. What is this product? Who’s it for? Is it really for NHS patients or the general public? What’s its purpose? And then, less importantly, how to promote it? So the process was quite slightly tortuous. There was a meeting in London slightly strangely, in a private house. I looked at literature. Happy to do that. Lunch was provided, but classic they had the most delicious lunch, but really not very suitable at all for low fibre diets, people with IBD we all had IBD there. So that was a strange thing. Slightly amusing, but irritating really. Visiting a lab outside London. We had to take pinprick blood test. We agreed to that happening and then getting this report afterwards. But then getting on to the issues of this study, it took up quite a bit of time, I suppose, but I was happy to try and see if it would help having my voice, as part of the group. But it did highlight, this particular example, I thought it was quite a useful case study because it did highlight various really important issues about what they were doing or what they were aiming to do, and I think the key thing was that they really didn’t seem to be very aware of what the NHS already does. So I’ll be lucky that they do do tests, blood tests for CRP levels, the faecal protecting blue stool tests, even more sophisticated measure of inflammation. So that’s already available. So I was I said to them when I’m not quite sure I would go for yet more blood tests. You know, we’re a bit fed up with doing all these tests. What? What are you really adding? What’s different about your product? And then I think some of us started to think well actually is your product, which is very sophisticated, you get this glossy report, better suited perhaps to the worried well or people who are really fascinated by the sort of scientific aspects of their lifestyle. Is it really strictly medical or is it something just of general interest to the wider public?
And then I guess I had the third point on my slide. I wanted to be clear about my own marketing, my own ethics. I’m passionate about the NHS and I wanted to work out am I helping a commercial company develop a product actually more for private individuals? Is it really going to help NHS patients? Has it really got a benefit to public health and actually in this particular case, I wasn’t quite convinced, as I’m sure you’re, you’re inferring from what I’m saying. So I stepped out of it, but I think it’s always good to get involved. And I think I hope I helped them see what they could do, which possibly wasn’t what they were set out to do. But I think to rigorously interrogate it was absolutely worthwhile.
So I’m also passionate about promoting wider awareness and understanding. We all know how hard it is to talk about bowels and bowel disease, but this there’s a screenshot on the right of an online article online, the Telegraph and my consultant actually, he’s never contacted me like this before, but he actually said would I mind talking to a journalist about basically providing an understanding of this disease and benefits of early diagnosis, really happy to do that. I think if you get asked to do that, it’s worth it.
So my conclusions really I hope I’ve covered a little bit about living with Crohn’s disease, the importance of mental health, as we’ve talked about, the psychological impacts get involved in research, get involved in research and raising awareness and understanding, because I think you can make a difference. So I’ve turned from being, you know, basically just a working mother with a horrible disease. I hope having a voice, a little voice, one of many. We are stronger together, so it’s definitely worth getting involved. And then I think you feel much more empowered rather than feeling low and fed up about this horrible thing, you can actually contribute to improved outcomes, improved medications and research and maybe one day, a cure. Thank you so much for letting me share my thoughts.
Sam
Thank you, Alicia. Lovely positive words to end on there. I’m going to now go over to our final speaker for this session, Nigel Horwood. So Nigel is a long term IBD patient, having been diagnosed in 1978. He went on to spend a career in programme management. In 2017, he took early retirement and whilst looking for some voluntary work that could best use his skills happened to see a social media post from Bowel and Cancer Research as they were then known. Now Bowel Research UK. He joined the PPI programme and has since taken part in many research studies. He’s also written a book about living with Crohn’s disease, called Wrestling the Octopus. So Nigel, over to you.
Nigel
Thank you. Sam, can you hear me OK? Are we OK? Fantastic. I think you’ve just done my speech for me, actually, Sam, but here goes. I’m Nigel Horwood. Another member of the PaRT network, mainly getting involved with research project. I’m hoping to explain that why I became involved with medical research, how I joined the PaRT network, although Sam has just mentioned that. And then run through some of the projects that I’ve been involved with, lucky enough to have been involved with. And I hope at the end of my talk you will realise the breadth and depth of opportunities for patients like myself, like yourselves, who want to become involved in improving knowledge and healthcare and bowel conditions and to enthuse you enough that you become a member of the PaRT network like I am.
So let’s get the introduction out the way. I’m a long term inflammatory bowel disease patient having been diagnosed with Crohn’s in 1978. Since then, I’ve had three lots of surgery. The first one was in 1979 for appendicitis, which turned out to be a perforated bowel. I’ve heard that story many times. Then I had a 30 year break before I had an ileostomy with a stoma in 2010. And then in the summer of 2011, that was taken away. And these surgeries are not without side effects. The perforated bowel resulted in peritonitis. And some 30 years later, it came back to bite me. It led to a blood clot forming in my portal vein condition known as port vein thrombosis. What I find hard to comprehend is that 30 years later, this event could cause me so much. So many issues, so many problems, but multiple consultants have assured me that that is very, very possible. What does PVT do? It causes a network of veins to grow around to take the extra blood that has stopped passing up your portal vein. If you think of them as internal varicose veins, it makes further surgery very risky. So that’s one reason I want to find better treatment so that I don’t have to go undergo further surgery. I think the statistic, latest statistics I’ve seen that 80% of Crohn’s patients have to go undergo surgery at some point in their medical career, and 10% of those will have to have resurgery within five years so you can see I want to avoid that. I think the most dramatic veins were the ones in my oesophagus. And what shall I say when they burst? It was somewhat of an adventure. I’ll leave it at that. Secondly, when I had ileostomy, I lost my terminal ilium, and that inevitably leads to bile acid malabsorption, and other bowel conditions. The section of bowel that’s removed would normally absorb bile acid, but with it gone, the bile acid passes straight into the colon and you can imagine acid and colon don’t really go together if it’s not controlled, it’s highly debilitating. And really can affect your quality of life. It appears to be an area where much more education of patients and healthcare professionals is required. So looking back, it was probably, yeah, 45 years ago I underwent my first procedure, which was a barium enema. All I’ll say on that is if you know, you know, and the word clench took on a whole new meaning after that. Since then, I reckon I’ve had virtually every test imaginable, and multiple trips to A&E. So I’ve really seen the NHS at its best and as it’s worse, so I feel quite well qualified to comment on patient experience. And that brings me to why I wanted to get involved with research. I think I’ve been under the misconception that medical research just meant volunteering to try new drugs. But after my ileostomy, I moved to one of the big London teaching hospitals and I found that at every appointment a student would come up to me and say can I have some blood or can I have some tissue after your next operation? And I realised that it wasn’t just about taking you drugs. I think the weirdest one was being asked to spit into a tube for 10 minutes to collect DNA, but that had piqued my interest and I decided that once I had the time, once I retired from work, I needed to know more about research and see if I could get involved in some capacity.
How did I get involved with Bowel Research UK? Well at the end of summer 2016, I took early retirement from my job in programme management and I started to look out for studies and there was a request on, I think it was Twitter or X as we now have to call it, for volunteers to take part in a Crohn’s research project. At the time it was called the romantic study, which has subsequently had to be changed, I’m told. It stood for the resection or optimal medical therapy of ileocecal chrome. So my experience of the ileostomy and that was absolutely ideal for this for this study. You’ll see from the name, romantic, but researchers normally come up with a name that may have absolutely nothing to do with the subject they are researching. But they like a good title that people can remember, and we were discussing this earlier just before this meeting. We’ve got PANTS and I don’t know what it stands for. And then they followed that with UNDIES and VEST. So. So don’t put off if you see you’re invited to take part in the VEST trial. In March 2017, I attended my first PPI meeting in the very imposing surroundings of the Royal College of Surgeons in Lincoln’s Inn Fields. It was great to meet all these other patients. I’d never interacted with patients other than the odd Tweet. And it made me realise how each of us experiences these diseases in many different ways. There’s still common aspects, but it really did bring home the uniqueness of each of us as patients, and it was there I first met Sue Blackwell, who will be talking to you later about her own research. And I also met the PPI Manager for Bowel and Cancer Research as it was known at the time. And they asked me if I’d like to consider providing some input to a startup company that they were working with, a company called Motilent who were developing software to assess gut mobility from MRI scans and, well, the MRI cine-files to be precise. The aim is to allow gastroenterologists to be able to monitor the effectiveness of drug therapy without having to put the patient through regular colonoscopy. MRI scans being far less invasive, and as long as you don’t get claustrophobia from the MRI machine itself, then I will always choose MRI over colonoscopy. And also if you consider 70% of Crohn’s patients have their disease in the small bowel. You can’t get to that with an endoscope, so it really is innovative technology. And I jumped at the chance to get. involved with that. And the company has now completed the development of the software. It’s certified for use in the UK and America and the EU, and it’s starting to be rolled out it. It was really fascinating, personally, to work with such an innovative company and to see the hoops they have to jump through to get certification and adoption of their software. And the second project for which I was joint PPI lead with BRUK is the OSIRIS project and that’s looking at ways of improving shared decision making for high risk patients going in for surgeries. Be it bowel cancer surgery or hip replacement surgery. Since our involvement with the programme, they’ve now started producing risk calculators and they’ve also got iPad applications which surgeons will use when they’re having their free, free assessments with the patients. And it’s going well. They’re currently recruiting hospitals to try the system out in clinical settings and that’s due to start before the end of the year. So that’s another one that we’ve managed to get involved with, get the project off the ground now as a spin off of the risk workshops that we ran for the OSIRIS project I was then asked if I would like to get involved with shared decision making training for the anaesthetists at Guy’s and St Thomas’s Hospital again, an absolutely fascinating thing to do, seeing how trainee surgeons training anaesthetists were currently approaching patients and seeing what could be done better. But then of course, COVID came along and that knocked it all on the head. All available staff were put into operational roles. But slowly the PPI meetings have started coming back, but we’re now using Zoom or Teams as indeed we are today. That has actually made it much easier for people to participate because they haven’t got to travel to Manchester or London for a meeting.
There’s other PPI activities that Alicia mentioned, things like reading through patient information sheets just to check the grammar, acceptability, or just the clarity of it. The projects I was involved with gave me the confidence to really get involved in some other more general items. So in late 2019, I was asked to join the Gastro Project Research Board. So it’s what Steve was saying about hospitals have their own opportunities for you to take part in research or vetting research before it takes place. My role is to comment from a patient angle and comment on the acceptability or practicality of those projects and I mean, I’m always interested to know if a project is proposing a colonoscopy every month because I can tell them from day one, they won’t get any recruits. The other thing I got involved with was bile acid malabsorption, which I mentioned earlier on as a result of losing my terminal ilium, and it has become my soapbox subject. NICE were looking for a specialist committee member to revisit a report they’ve done on the investigations into the commission and I applied for a role with them and I managed to get that role and serve on the committee and we produced our report, I think, in early 2022. So again there there’s another area that you can get involved with that is maybe peripheral to research, but if you feel that you have the passion about certain conditions, then people like NICE will be very, very interested in your in your contributions. Now I found generally being involved with PPI is a very valuable experience and it gives me a chance to put something back into the IBD community, but I wanted to know what it was like for someone else. So I spoke to one of my old acquaintances, who is the CEO of Motilent and I hope I captured his thoughts. He was saying that in order to get funding from the NIHR, that’s the National Institute of Health and Care Research, projects are required to show that they have involved patients, but this may not always be appropriate for every type of project and that can lead to PPI simply becoming a box ticking exercise and I have experienced this myself and felt no engagement with the research team, so maybe that’s an area that needs looking at. At the other end of the spectrum, you’ve got projects which if successful will require healthcare professionals to adopt new techniques and for those he would argue that PPI involvement should go beyond the completion of the project and actually go into the rollout phase of the product or the technique that’s being pushed. And it’s difficult to know. PPI’s not a profession. It’s… many of the PPI representatives are similar to myself, which I would described as retired and ancient. I hope I haven’t offended anyone there. I have met many that aren’t retired and ancient. I hope I haven’t offended anyone there, I have met many that aren’t retired and ancient. We’ve got the time to devote to these activities, but many patients will have full time jobs, lives, other things going on and the expectation for them to be able to contribute the amount of time that’s required and live with the disease is probably too much. Though it would be nice to have a better demographic on the PPI committees. That’s certainly the experience that I have seen.
I’d just like to sum up by saying there are many advantages to getting involved with PPI. For other patients you’re helping by developing more effective procedures and treatments. For the NHS you’re providing, you can be providing innovation, maybe improved knowledge and how to treat those patients and ultimately that can save money by reducing abortive treatments. But for yourself there’s the chance to converse openly with others, be they fellow patients or healthcare professionals, and a real chance to gain a better understanding of your conditions. So I hope you will sign up to be part of the of the network and my final thought is those who plan to use PPI from the other side, from the commercial side, from the research side, please try and be clear what you want to get out of the process before you get us involved. And if you’re unsure then speak to BRUK in the first instance and see how they or their members can help you out. So. I hope I have enthused you enough to join and now we’re going over two questions I believe.
Sam
Thank you very much, Nigel. Yes, we are going to your questions now. So please do pop any questions into the chat or the Q&A box. We’ve had a couple already. I’d like to invite – everyone’s putting their cameras back on, lovely. So I have a first question for Steve, which is: What does a campaigns ambassador do?
Steve
Sure. Campaign Ambassador is specific, to my knowledge, to Cancer Research UK, and it’s a political link. So basically the campaigns team work with quite a large team of ambassadors throughout the UK and we liaise with our local MP, trying to motivate the local MP to get involved in projects and campaigns, et cetera. It involves some meetings with the MP to talk through, for example, the current one is the anti-smoking Stop Smoking campaign and the need to drive for more work on that. So it’s a political engagement thing. It has involved me being at Westminster Hall for a debate, et cetera. So it is really very interesting to do, but I don’t know if all of the charities do that. Certainly it’s only CRUK that I’ve seen with it so far.
Sam
Steve, one of the questions for you in the Q&A was what opportunities are there for getting involved in the space between being a patient and being in the doctor / research area? This person says I live with Crohn’s disease and have chosen a career path in nutritional therapy and health coaching to help empower people with ways in which they can make diet and lifestyle changes that will support their well-being alongside medical intervention.
Steve
I think the experience that person has and the direction they’re going is going to be, should be really, really valued and in a moment I’ll ask Alicia to come because obviously it’s a disease area that she knows far better than your personal experience than I do. But I would say Crohn’s and Colitis UK, an active group, it’s, I would say initially. Working with the charities, getting involved with the charities, contact them proactively to let them know your profile and the things that you do, because you’re a patient but with different sort of experience, so you can add a lot more and see if there’s an involvement there. In the cancer community there are often local groups like my cancer, here in Reading got My Cancer, My Choices. There’s Berkshire Cancer Champions Group and they often do projects where they’re liaising with the local hospitals on improving care, etc. Again, those are ways to start working in in those areas. And then as you progress, you’ll get invited to more and more things. But I would, I would think that would probably be a logical start point, but this year you, you know this disease area far, far better than I do.
Alicia
Well, not, not really, but I think I think diet is so complicated. I mean, I’ve been to dieticians, I’ve, you know, I think for everybody with Crohn’s, it’s a bit different. And so I think each person has to work out what works for them and then try and be, that’s the challenge, as succinct and articulate about that as they can be. So for instance, I’ve got a little paragraph that I sent to friends if I’m ever going out to dinner and I’d do the same if I was speaking. I’d be happy to share a slide if I’d done that differently. Just on the sort of trying to make it really simple about the do’s and don’ts. People say low fibre diet, well, what does that mean? I mean, for me it means summer fruits are out, mushrooms are out, but a lot of things are in if they’re soft and squishy and seedless. So those are my 3S’s and, but I think, you know, people should, as I said, it’s very different for every single person. But I think each person, it’s a really good discipline to make sure you’re as clear as you can be. Whether you’re helping research or helping your friends understand it because they want to help. And I think researchers need to be clear. So yes, write your own little paragraph. Soft, squishy, seedless.
Sam
So anything that you would add to that, Nigel?
Nigel
When first diagnosed, I was just told eat what you want and if it disagrees with you, stop eating it and I must admit I’ve stuck to that. I have tried a few diets, I’ve taken part in a diet trial for King’s College. But I’ll stick to the original principle of if I know it doesn’t do me any good, I’ll stop eating. So I’m a I’m not a sceptic, but I’m not. I don’t strictly keep to a diet.
Alicia
Can I just add? And that was really useful, Nigel, just to add one thing and obviously it depends on where you are with your disease. So obviously when you’ve got a horrible flare up, you’re just going to be cutting practically everything out. And so I I’m a, I love Modulen and Fortisip. So if things are really bad, I just stick to those two and then you know, you’re safe, you’re getting nutrition and that’s just how it is for a bit.
Sam
Interesting, thanks all. Question for Nigel from Neil. Do you think you improved your actual treatment and care by taking part in PPI?
Nigel
Thank you for your question, Neil. Yes, I do. It’s partly because just discussing, open round table discussions on people who’ve got similar diseases, especially with Crohn’s with me. You, you start to learn how other people cope with things. Meeting the medical professionals I find is also very useful because you can see how they think and how they approach the treatment, and you can maybe… what shall I say, manage the way you interact with them accordingly. I’m very much into treating consultants as a resource that we can all use and you have a partnership with them and I shall trot out my phrase which I use every time that I’m the expert in my health and the consultants are the experts in my condition and if you bring those two together, you should be able to achieve better treatment and better quality of life.
Sam
We have a well, looks like a comment in the Q&A, so I’ll read it out and see if anybody would like to speak to it. David says one big failure in bowel cancer has been just doing what has been done before and not trying something different. Trials are often left too late until the disease is widely spread, not enough research on common variables in patients, lifestyles and diets, and eating habits. Standard of care, chemo has not really changed much in the last ten years is. Does anybody want to say anything to that?
Nigel
Yeah, I was having a discussion, as I said in my talk with the CEO of Motilent, who I, we pass the time of day every so often when I’m in London, have a coffee. And he was saying that when you’re bringing innovative technology or innovative software in, it’s very difficult to actually get that introduced into a system where people are quite happy or consultants are quite happy to be going along with the way they have done things for years. Why would they want to change or bring in an additional piece of information or an additional test if they were quite happy going along as they are? So the actual rollout phase of things like new software, it’s incredibly difficult. It’s a lot different in the states. Because of the way the health system is funded. But over here we do tend to be very conservative in the way most people approach new technology.
Alicia
And I think can I just add very quickly that I think there’s a communication issue. I mean, as I said in my in my talk, I personally believe so clearly, I’m sure everybody would agree. But on the most clear structured communication about what is going to be the benefit, you have to be so persuasive if you’re going to try and persuade people to take on new technology. And you can’t try hard enough to be really clear about that. What are the benefits? What does this do? What is this going to bring? Who for? Just the very basic questions. And I think sometimes people fail to do that. In my experience, they get so wrapped up in the latest thing that they’re doing and they blind you with science, but they haven’t actually gone back to those basic questions.
Steve
If, if I may say, I’m sorry, specifically on the bowel cancer side of things, I think I understand where you coming from. David. But I can say that there is a lot of variations throughout the UK in terms of how things are done, especially, you know, progress with new treatments, etcetera. In the last decade, there have been an incredible amount of new treatments come through for bowel cancer, for colorectal cancer. That has changed the landscape. The genetic testing for KRAS and BRAF. So the mutations and the different types of how treatments are tailored towards that is really significant and the different things like immunotherapies etcetera that have been approved and are more routinely being used now early on with patients. So I think there has been a lot of changes. However, not every doctor has necessarily come along with those, and we do ,on the different forums we do come across people that say this is what’s happened with me and my doctors just said they’ve done everything they. And then we say well, actually you could ask about this or ask for a second opinion with a view to this investigation and actually we find that six months, 12 months time, that person’s got no disease present anymore because they went down those routes. So what used to be called the cancer network doesn’t exist within the new setup of the NHS where everything’s divided up into local trusts. So you don’t get the crossover of skill transfer that we used to have. So there’s an aspect there of education for some of the doctors to know what’s going on. There has been, as I said, there have been I’m really pleased to say a lot of really good advances that are available on the NHS, some of them you have to pay top up, but the majority of the treatments that have come through are in fact NHS funded and so you can get hold of them. So that’s really, really good. David also comments about research on the impact of things like lifestyle diets, et cetera and I think the good thing on that, the good news on that is there is a lot of research ongoing. You’re quite right that there wasn’t. There was a lot of, you know, there is a disease. Let’s slap some, some, some medicine at it. Now there’s a lot more looking at the holistic care of patients. I’m sure that, Sam, you’d be able to comment on Bowel Research UK’s work. But there’s a lot now that steps back more and looks holistically to patients. And a well-being approach to care as well. So hopefully for David, that helps to address things from different points of view as well.
Sam
Thank you. So we’re almost out of time, but I did just want to ask one really quick question to all of you just to kind of wrap things up and that’s what would you say to somebody who is considering getting involved in research or advocacy? Is there anything that you wish that you had known when you first started, just to finish us off.
Nigel
Yeah, if I’d known just how interesting and how much it’s developed. My thoughts on various diseases, procedures. How to approach consultants? I wish I’d done it sooner. I wish I hadn’t waited till I’ve retired.
Alicia
And I would say go for it and value your voice. You know, you may just be a working mum, working dad, single person. Anybody you know, you have got a voice, you absolutely have, because of your experience with these diseases. I’d also just say when you look at the material that you get sent, if you want to get involved, I would say your default should be yes I will, but equally I think just yeah, just be kind to yourselves. I’m very much into not doing too much and you know, as I say, I speak normally on art and architecture. I don’t speak about bowel disease. So just make sure you you’re giving yourself enough time in your life to do it. But it’s very rewarding and you meet other people so yeah. Say yes.
Steve
Just to reflect on both, it definitely do it. I find advocacy really rewarding space to be in and get to meet lots and lots of great people. And these days patients are changing medicine. It’s us who are helping to reshape things. It makes a difference. And as Alice you just said. As I mentioned in my last slide in my presentation, do be kind to yourself though, you know, if the, don’t get too carried away with it. Nigel mentioned when he was, in his talk. Some PPI can be requesting a lot of time from you, almost like it’s your full time job. It’s, keep a balanced, keep a balance to your life as a whole. I say no to lots and lots of things because that allows me to then really focus on the projects that I’m involved in and give more to those. So but definitely if you haven’t been involved in in PPI work and advocacy work and you’re interested, go for it. It’s worth it.
Sam
Thank you all. Thanks so much for coming to talk to us today and for being members of the Plat network and for everything that you do.
Thank you for listening to Can I Butt In. This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit BowelResearchUK.org where you can join our People and Research Together network or PaRT; read about our research campaigns and fundraising; or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.