Episode 4 - transcript
Reuben Lewis 0:11
Welcome to the podcast on the National Institute for Health Research - the NIHR. This is an episode in this series Conversations About Diabetes Research. I'm Reuben Lewis, a Research Delivery Manager at the NIHR Clinical Research Network North West London. It's a pleasure to have you with us.
Dr Neil Hill 0:30
And my name is Dr. Neil Hill. I'm a consultant in Diabetes and Endocrinology at Imperial College Healthcare NHS Trust, as well as the speciality lead for diabetes for the NIHR Clinical Research Network North West London.
Reuben Lewis 0:45
This time we hear from Denis Collen, who is living with diabetes, about his journey with the condition and his patient advocacy work.
Reuben Lewis 0:57
It's a real pleasure to have with us today, Denis. Denis, hi.
Denis Collen 1:02
Hi Reuben, hi Neil. I just briefly, I'm a person living with diabetes in north west London. And I'm here tonight to just talk to you about some of my lived experience. And some of the work that we've been doing across north west London the last 13 months, during COVID, working with research to help improve the lives of people living with diabetes across north west London.
Reuben Lewis 1:25
Thank you, Denis, it's a, it's a real pleasure to have you on and to and to get your insight and input into these conversations. So you've already alluded a little bit to your journey. I wondered if you could take us through your journey with diabetes. And tell us a little bit more about it, please.
Denis Collen 1:42
Yeah, absolutely. Reuben, I mean, I, I was diagnosed in 2010 with heart failure and type two diabetes. And if I'm honest, the diabetes wasn't the thing that really worried me, I was I was given 24 hours to live with my heart failure. So I had to deal with some big challenges. But the diabetes was a, reason my diabetes manifested itself, I think was actually poor choices that I was making about lifestyle, poor choices I was making about diet, poor choices I was making about work and trying to be able to work around the country and living in hotels and not take care of myself. So you could argue that the heart failure was also that challenge.
Denis Collen 2:24
But anyway, I had a period of my life where I wasn't able to work for 16 weeks, I had to spend the longest period of my life, working life, at home. And through that recovery in that period, I lost a lot of weight, I was very weak, and I had to sort of rebuild my strength. But it's safe to say that, at that time, I was learning about what living with diabetes was about. I had no concept of what type two diabetes was until that date. And I had to go away and research with with sources like Diabetes UK, information that I needed to understand about diet and about exercise and about why I had type two diabetes. So yeah, that that 2010/2011 was quite a steep year in terms of learning.
Dr Neil Hill 3:14
Where did you get most of your information from, Denis?
Denis Collen 3:17
To be honest, I just went to Diabetes UK's website. It's so simple, because they've got so much.
Dr Neil Hill 3:21
It's a good resource, isn't it?
Denis Collen 3:22
Yeah, yeah, amazing research. But also so many simple little hints and tips for people who have not got a start, you know, it's like, here's a plate, choose a smaller plate size for your portion sizes, choose a smaller dinner plate. Here's what the portions should look like for your plate. And here are some really simple books.
Denis Collen 3:40
Because there is a fear. I think, when you get told you've got diabetes, you think that means you're going to give up everything that's sweet in life, right? And that's not enough. I mean, I remember when I was spoken to by my diabetic nurse, and I asked her if I could ever eat chocolate. And she said, well think about it this way, Denis, when you have a bar of chocolate, you can have one square a week at that bar of chocolate if you want to get yourself better. But if you want to eat the rest of the bar of chocolate, you might want to put it in a glass box and keep it out your way for a while because you need to you need to get some control. And that kind of message about how to re-proportion things in life, was quite a quite a powerful message that she shared with me.
Denis Collen 3:40
And I was wondering, because we we've met you properly in the Knowing Diabetes patient group. And so where in your journey that you've described, did you start getting involved in sort of patient advocacy or getting involved if these sorts of groups?
Denis Collen 4:39
I think, to be fair, Reuben, I got involved ran about 2016/2017. Because by that stage, I'd kind of got over the hump of my initial diagnosis. I've got myself in a better place with my diabetes. I was, I'd lost a lot of weight at the time and I was exercising more regularly. So I think I was in a reasonably good place and I and I I got into vited actually by Harrow NHS CCG, to, to go through an interview process. Because I was already a big champion in my community of leading activity. So between 2012 and 2014, I instigated a program in Harrow to make sure that every park had a green gym in it, with the community and with providers and with the local authority. And Harrow, by 2014, had a green gym in every park available to every member of the public. Because one of the things I took away with my diagnosis was that people needed access to the ability to exercise, even if they couldn't afford to pay for gym fees. And Harrow is blessed because it has 28 parks.
Denis Collen 5:44
So actually, we worked with a local authority and some some funders, and, and the Public Health England team to get some funding in and make that happen. So I suppose I had been a big advocate in my community of trying to help others. But I kept seeing people around the corner for me at 5:30 in the morning, breaking into my local park, because they'd obviously been instructed by their GPS to do laps or to exercise. And I would see members of our community shuffling around the park, thinking to myself, we need to do a bit more in harrow about this, because this isn't, if we're doing this at 5:30 in the morning, because we've been told to exercise, we need to do better. So I got interested in it. And then and then like I say, 2016/17, I was knocking on the door with people like Diabetes UK engagement officers to try and get them involved. And then for some reason, like I said, the NHS contacted me, they interviewed me, I had to complete an application process for a role that nobody could describe what you were going to do, but I had still had to complete an application process. So yeah, 2016/17 I got involved.
Reuben Lewis 6:50
I mean that that's really inspirational, Denis, just to, to see the need in your community and to act on that. That is super, super encouraging. I like you know, you have described the journey of grappling with and getting to terms with the diagnosis, you describe the journey of sort of how you got into advocacy and actually wanting to represent more patients. This is a conversation about diabetes research, and where in your journey did research come in? Or your awareness of research or maybe taking part in research?
Denis Collen 7:26
I think, you know, the interesting thing with the research pieces is, you know, and the biggest piece I've learned about research has probably been the last 14 months because of COVID. You know, I think it's interesting, and we should, you know, we shouldn't underestimate it. For last 14 months, I was I was lucky enough to be sent a letter by our esteemed health secretary, in early February, telling me that I was on a list of people that needed to shield. I didn't know what shielding was. And I don't think anybody knew what shielding was at that stage. But suddenly, when you get a letter from the Health Secretary signed Matt, you take it quite seriously, right? Whether you choose to or not. And I have to also say, you know, Reuben, one of the things that I've really been impressed about is that I not only get the email, and the letter, I also get a text message as somebody on the shielding list of all these things. And I also learned very quickly is that I get the information, I was getting the information, two days before our friend Boris tells the nation about what's going to happen. So, you know, I have to commend and say, 'well done', because actually on the sheilding list, it's been quite tough. But then that means I live in my office a lot of the time and I have to read a lot of stuff.
Denis Collen 8:35
And the partners in diabetes group gets lots of requests for patients to help with research. And some of that is quite interesting. Some of it is stuff that you kind of can't work out what's the point of the research, because the jargon used in the in the paper that you're reading is is not designed by people that are patients. It is designed by people who are trying to speak to somebody else. And that's not a criticism, it's just an observation, because I think it's really important that if you want patients to be involved, there has to be a patient layman's version of what the research is aiming to do in the material.
Denis Collen 9:13
But luckily, because of the group of the partners in diabetes, and it's made up of people living with diabetes, type one, type two, all the way across London with all sorts of personal experiences. Which I think sometimes people forget that if you're a person living with diabetes, you haven't lost the art of what your job is, what your profession is, or what your skill is. So I think having people around you that have done research projects before, who were also part of the partners in diabetes group, means that they can break that down so you can think right, okay, yeah, we can, we can get involved.
Denis Collen 9:47
So the last 12/13 months we've been involved in talking to the My Way team about their app and how the My Way app can help people living with diabetes, understand and record or see their patient record information and have a more preventative way of managing themselves. Which is great if you're a big advocate of understanding your diabetes. But it's also, how do we get patients who are not, people living with diabetes who are not advocates, even interested? Because there's a big spectrum of research out there. And finding patients who want to get involved has been quite a, quite a challenge I think. So yeah, last 13 or so months, I've, I've seen and been invited to more and more projects and research activity than I've previously done in the previous four years.
Reuben Lewis 10:03
Why do you think it presents such a challenge, Denis? Do you think from your perspective, you can put sort of specific reasons as to why it might be a challenge to involve people that are not naturally part of any patient advocacy?
Denis Collen 10:50
I think what it comes down to is building a network. You know, there's a huge network that I've sort of learned about in the last 13 or so months. There are clusters and groups in various parts of London that are doing great jobs with people living with diabetes, and great advocacy. But it's the join up between the research institutions, the NHS, and the people living with diabetes that can give that insight. That that pathway needs to be a lot easier to find, and a lot easier to navigate. Because, you know, what I would say is that, when I've done activities and workshops with Diabetes UK, they bring maybe 100 people in, 100 people, patients, people living with it, to come into a workshop environment. And then they will walk around and talk about what the research is going to be about. And you do a traditional workshop. Now we're all digital, actually, how do we tap into these digital networks that are available? You know, prior to 2020, I didn't know about the Hammersmith and Fulham diabetes group that meets every Monday night at six o'clock and is reaching out to diabetes groups in south London, in west London, in east London, and connecting everybody with research presentations, talking to people that want insight about their research, whether it's about music, whether it's about activity, whether it's about data building, whatever it is. It's about just connecting those three elements that I think are missing, or were missing. But maybe now with the advocacy and more digital action. And, you know, we're talking together, but none of us have traveled to meet each other. We're not in a studio. You know, we're all meeting today on a Friday afternoon. Now, let's be honest, in a previous guise, how likely am I ever going to see Neil on a Friday afternoon? From a consultants point of view, right? Because we all know consultants only do four or five days a week, right? If we're lucky, but finding time on a Friday afternoon?
Dr Neil Hill 12:50
Harsh, a bit harsh.
Denis Collen 12:51
Yeah, but what I mean is, you know, we can now do this that we couldn't do before. So how do we unlock the opportunity to reach more patients through digital channels and digital engagement, to get them to realise that these, these projects are super exciting, but also worth getting invested in?
Dr Neil Hill 13:09
So So have you been involved in research yourself, Denis, as a as a patient or as a volunteer participant?
Denis Collen 13:17
Yeah. So Neil, I've been involved in a couple of projects, one of them I'm currently involved with now with Brunel University, we're looking at how the pandemic has affected the amount of activity that people living with diabetes do during the day. So technically, we should probably all get up and run around the room for five minutes, because we've all been sat down for over half an hour. The project is trying to understand that with working at home, do do people living with diabetes have less activity per day, than, you know, they used to have. Because again, if we, if we think about it, we probably all walked to the station or travelled somewhere to get somewhere and we would have walked or exercised ourselves. We would have walked around an office, we would have done those things. If we were working in any of those sort of more mundane roles. If you're working in a hospital, you probably walk 10 km every day, because of the size of the site and the and the you know, the geographical nature of it. But for patients, have they become more sedatory, have they become less active, is that causing complications? Is that causing issue? So we're working with a team at Brunel, I'm working with the team at Brunel. I was I was recruited through the Hammersmith and Fulham diabetes group. They asked for volunteers. I clicked a link, I filled out a questionnaire. I answered all the questions that were online and all the GDPR questions and then within 24 hours I got an email saying congratulations, you're now going to be part of the project, the research team. And so far, it's been very unintrusive in my life, if I'm honest.
Dr Neil Hill 14:47
So good experience so far?
Denis Collen 14:49
Yeah, great experience and also not onerous. I think, Neil, very important to say to people living with diabetes, you're not expected to be anything other than somebody to share your insights. With the project team or the research team, so don't be worried about it and actually embrace it. Because, you know, they want to hear what your experience is like, your lived experience of living with the with the condition, and some of the emotional challenges that you might face or some of the mental challenges that you might face, because I don't think any of those things are extracted when we talk about what's it like living with diabetes, the highs and the lows. We don't really focus on that, Neil, because, you know, my, my personal experience is that we shy away from that. Men shy away from talking about whether it's easy to live with diabetes or not. And I don't think we do a great job of unpicking that. And I think research specifically can hopefully unlock some of the myths that go around that.
Dr Neil Hill 15:44
Yeah. And has anything surprised you in terms of the research that you've been involved with, either either positively or negatively?
Denis Collen 15:52
I thought about this actually. And you know, one of the things I'd like to say, I've had a great experience with three of the projects that I've been involved in, I'm now being asked to be involved in the My Way radar project, I was a participant in two workshops. And I've been asked now to write a blog about my experience as a patient to, to almost wrap up the project and give my my patient's view of what it was like to be involved in being asked those questions. So actually, I've had nothing but a really positive experience.
Denis Collen 16:20
But the fact that we've, you know, I've been involved in it from either the beginning in the middle and the end. And I've been checked in with that, and I've got that ability to have that conversation. I think he's just really, really powerful, completely different to what I probably expected when I volunteered to get involved. And I think that is maybe not not called out very well.
Dr Neil Hill 16:41
So in terms of other people who might be interested in taking part in research, do you have any, any advice or any suggestions for them?
Denis Collen 16:50
I think what you have to do is, you know, find out whether your GP has got any access to that information, or if there's a local, you know, university or anybody else that's local, put your hand up and be and be available. Because I think, you know, one of the things I've definitely learned is that by sharing your experience, as a person that with diabetes, and helping to articulate what the experience is like on the on the research projects, and what it was like for you, you're able to make an impact.
Denis Collen 17:19
And I think whether it's one or whether it's 20, you know, I've been lucky enough to be in some groups where we've had 20 participants are all living with diabetes, who I've never met before. And through the power of the digital platforms that we're working on these days, hopefully, we've all got a little bit more connected. And we're all trying to help each other.
Dr Neil Hill 17:39
Yeah.
Denis Collen 17:39
And I think that's another benefit of, you know, this this concept of using groups of people living with diabetes, Neil, because once they make that connection, and they can share their experiences, they may find answers to problems that they didn't realise they may have, or they may not have. But sharing those experiences in these workshops that I've been lucky to be part of, is just another great way of helping people to hear other people's lived experience.
Denis Collen 18:06
So yeah, I've been, I would absolutely encourage anybody listening today to, you know, get involved, if you're not involved, have a look at the Know Diabetes website, find out how to get connected and find out what you can do to get involved in any research projects. Because I think the more people that get involved in insight comes into that point, the better we can make it for everybody living with diabetes in the UK. Because you know, it isn't, you can't sit on your hands and be quiet about diabetes, you got to deal with it. And you got to face into it. And you've got to take it, take it on the chin and get on with it. Because, you know, you don't want it to define your life.
Dr Neil Hill 18:42
Absolutely. Yeah. No, that's, that's a very good point.
Denis Collen 18:46
You know, and I was really shocked, Neil, I, I had no idea until I started reading some of this research material, the amount of money the NHS spends on dealing with diabetes as a budget. I mean, is I think it's 9.9% of the annual budget is invested in dealing with diabetes in this country.
Dr Neil Hill 19:06
It's billions of pounds, isn't it?
Denis Collen 19:08
Yeah. It's it's an amazing amount of money that we're we're putting away but just to treat it not to look positively at reversing it or doing something really different. The amount of money that is invested in the NHS is, is quite scary.
Dr Neil Hill 19:23
I'm just I'm just quickly googling to see how much - 2.3 to 2.5 billion on inpatient care.
Denis Collen 19:31
Yeah. And I think I read somewhere on an NHS England document that I was reading, something like 9% of the total budget for the NHS is is is committed to diabetes.
Dr Neil Hill 19:43
Yes.
Denis Collen 19:44
And that that's, that's quite frightening when you think about the numbers.
Dr Neil Hill 19:47
Yes, it is.
Denis Collen 19:48
You know, and I you know, the reason I get very excited about this, Reuben, I live in a borough that is not at the top of a list of tables that's very good for diabetes. You know, let's be blunt. Harrow has a really, really bad record about type two diabetes and diabetes in general. And, you know, I looked at my road in the last 12 months, and I wonder how many people are living with diabetes locally. And and just getting on with it because it's easy to take two tablets on Metformin a day and not and not do anything about it. But the long term impact of not dealing with it, the heart failure, the hypertension and the other complications that come from it, we should all do something more to try and avoid the next generation and the generation after having to live with it.
Reuben Lewis 20:27
Yeah, it's an interesting point, isn't it, Denis? Because actually, part of our remit as an organisation is to put research where where the prevalence is, where were the where the patients with their, you know, most prevalence is, and so we are heading in a direction where it's not just the responsibility of those that are diagnosed or potentially have it, it's the responsibility of everyone from, from the funders, through to the people that deliver the research to everone to put research, to have the most appropriate research, where the populations are, where they're where the prevalence is. So it is something that is very much on the agenda for the Department of Health and Social Care. And so I'm sure we are heading in that direction. And so north west London, is a is a key area for this and myself and Neil are very, very aware of that. And, and we're we're working hard to bring as many studies as possible for people to take part in to to answer that.
Dr Neil Hill 21:28
Yeah. So I think we've probably reached the end of our time. Denis, thank you so much for taking, taking time out of your schedule to chat with us.
Reuben Lewis 21:42
This was an episode of the NIHR podcast part of our Conversations About Diabetes Research series. I'm Reuben Lewis.
Dr Neil Hill 21:51
And I'm Dr. Neil Hill.
Reuben Lewis 21:53
Thank you for listening. For more information about the NIHR you can visit our website www.nihr.ac.uk. Or find us on Twitter @NIHRresearch.