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Diabetes Discussions: Research

In this episode, Jack Woodfield, News Content Producer here at Diabetes UK is joined by Sarah Parsons and Dr Vicky Salem to discuss diabetes research. 

Sarah (story link) was diagnosed with type 2 diabetes at the age of 21 and has dedicated herself to taking part in diabetes research, and she is now training to be an NHS Research Champion. She talks about the wide variety of projects that you can get involved with and why she feels it’s such a valuable experience.  

Dr Salem is a clinician scientist and consultant diabetologist at St Mary’s Hospital in London. She shares an update on her research into a potential cure for type 1 diabetes, discusses heterogeneity within diabetes (diversity within a health condition), and offers an insight into some of the challenges faced by research teams. 

 

Diabetes Discussions: Research transcript

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Episode 5 transcript

Jack [00:00:10]: Welcome to Diabetes Discussions, the brand-new podcast from Diabetes UK. Each episode we'll be talking to you about the realities of diabetes, sometimes known as the hidden condition.  

[00:00:23]: Millions of us live with it. Millions more misunderstand it. We know diabetes can affect everyone differently. It can play a small part in your life or completely consume it. 

[00:00:33]: We'll be sharing personal experiences from those impacted every single day, but who don't let it hold them back.  

[00:00:40]: I'm Jack Woodfield from Diabetes UK and I'll be guiding us through the conversation and sharing my own stories of living with diabetes. Today, we'll be talking about research.  

Sarah [00:00:50]: As a living person with diabetes, whatever type you have, your input is vital to help protect people down the line in the future. 

Vicky [00:00:58]: We see really big disparities in diabetes outcomes across the country, across different socioeconomic and demographic groups and research into understanding that and how to fix that is hugely, hugely important. 

Jack [00:01:13]: Diabetes research has seen some major developments in recent years. These include the latest findings from one of Diabetes UK's ground-breaking studies this year, the DIRECT study, which showed that diet induced weight loss can lead to some people with type 2 diabetes going into remission and staying in remission through at least five years. 

[00:01:31]: Additionally, we are funding really exciting research to find a cure for type 1 diabetes, and our landmark research has helped doctors to identify and prevent complications of diabetes much earlier. 

[00:01:42]: Joining me on this episode to discuss diabetes research are Sarah Parsons and Dr. Vicky Salem. Sarah lives in Plymouth and is currently in training to become what's known as an NHS research champion, which we'll talk to her about. 

[00:01:55]: She was diagnosed with type 2 diabetes when she was 21 and had weight loss surgery when she was 36, which she spoke about at the Diabetes UK Professional Conference in April. 

[00:02:04]: And Vicky is a clinician scientist and a consultant diabetologist at St. Mary's Hospital in London. She's currently researching how a transplanted device might be able to cure type 1 diabetes, and she's previously researched gut hormones and their potential to treat obesity and type 2 diabetes. Sarah, Vicky, hello and welcome to you both.  

Vicky [00:02:24]: Hello, lovely to be here.

Sarah [00:02:25]: Hello. Nice to be here.  

Jack [00:02:27]: So, diabetes research is a very broad topic, and in this episode, we're going to look at a number of things, including some of the key milestones from recent years and those which could happen in the future. We'll examine some of the challenges facing researchers, and we'll talk about the importance of engaging people living with diabetes and those affected by diabetes to become involved in research. 

[00:02:47]: So, Vicky, you have an extensive history within diabetes research, both type 2 and type 1. Could you talk us through how and why you first got into diabetes research and some of the key moments throughout your career so far?  

Vicky [00:03:00]: Yeah, with pleasure. So, I am a doctor at heart, first and foremost, and I am now a consultant diabetologist, and I consider that the greatest privilege really of my career to have direct contact with patients and being a doctor is just wonderful. But there was always a small part of me that was a bit of a basic scientist, even from early on in my career, I did a degree in bioengineering before graduating from medicine, and I've always been curious about scientific research. 

[00:03:26]: As I entered training to become a consultant in diabetes, so when I was a registrar, I had an opportunity to take some time out of that clinical training to do a PhD, and that, for me, was the beginning of what's become the defining feature of my career as a clinician scientist. So that opportunity to do some research into diabetes as a trainee was absolutely pivotal. 

[00:03:49]: It's just such a great honour to do. It's such a privilege. I'm at the forefront of my specialty. I work not just in the hospital and directly with patients, but also in the university with students. And you know, being in that unique position to be at the boundary of knowledge is just both frustrating at times but it's hugely exhilarating and a great honour. 

[00:04:09]: You asked me about some sort of key moments and, you know, you often think about eureka moments in research and it, it's rarely like that. It's often actually a much slower, repetitive, mistake-ridden gruelling slog to an answer. But then you do get, you know, these occasional moments where you think that's just amazing. 

[00:04:29]: And I-I remember I had received some funding to embark on a new project to try to actually video a pancreatic islet. So that's these tiny micro-organs, about a tenth of a millimetre wide and these are the tiny organs that sit throughout the pancreas that secrete insulin. And they're really difficult to study because we can't biopsy the pancreas and we can't actually image it with x-rays. So, to really sort of directly visualize these things you have to find complex and interesting ways to study them. 

[00:05:01]: And we developed a new form of microscopy to be able to do that. And I remember going into the room on day one of the research study, and I was sitting in front of this half-a-million pound microscope, and honestly, I didn't know where the on button was. 

[00:05:15]: And I thought, how the hell am I going to do this? But you know, being a researcher is about being curious. It's about being brave. And two months later, I remember very clearly to this day, that moment where we first saw that video of an islet secreting insulin in real time. It's not been achieved before. 

[00:05:33]: And I just thought, we've done it. And I- there's just such a rush of excitement and, of course, within milliseconds, we were already asking the next questions, and that's research in a nutshell, you know, hard work to get to that point. You've answered your question and immediately it opens up the next ones. 

Jack [00:05:48]: Those moments must be incredibly exciting and from all my conversations I have with people from the Diabetes UK Research Comms team, the excitement that they have when they publish new material and new research is always very, very contagious. And it sounds like you're so busy. And Sarah, it sounds like you are incredibly busy as well because you are an active participant in diabetes research. 

[00:06:08]: So, could you tell us why you first got involved as well as what it means to you? And could you also tell us about some of the trials that you've been involved in?  

Sarah [00:06:16]: So over the last couple of years, I developed quite a few new medical conditions that were being masked by other medications. Once they were removed, they became more evident, um, things like neuropathy and also ischemia in my brain, which I'd never heard of through any of the publications leaflets I'd been given.

[00:06:35]: And I thought, what else is there out there that I'm missing that I'm at risk at. So, I start to do some reading up and one of my journeys took me onto a research page for one of the national organisations for research, and the study that was there on diabetes available in my area was for peripheral artery disease, a screening tool that they're working on.

[00:06:58]: So, I got incredibly anxious and thought well actually, with the family history of diabetes, all of us were type 2, I said, well, because I suffer leg wounds, I am at risk of this, so I put my name down. I got a call within a couple of days, and I was the first participant from my hospital, and it's been run all over the country. 

[00:07:17]: I contacted them in December. The trial had been running since March. They'd had no interest, and I was really, really shocked and disappointed because obviously everybody with diabetes is vulnerable to peripheral artery disease and things like leg ulcers and foot ulcers, and those can develop into full-blown sepsis and all sorts of complications, so- which obviously can lead to death. 

[00:07:40]: So, I went with it. The process at the hospital was incredible to watch. I was with a team of two doctors and then there was also the research technicians. They explained everything from the minute I walked in the door to the minute I walked out the door. They got rid of my anxiety. They gave me feedback on my personal risks, which was brilliant. 

[00:08:00]: I'm apparently doing really well, even though I've got active wounds at times. And they explained everything they were doing. They made me part of the process because the equipment they'd been given to trial, it was the first they'd seen of it that day. So, they were learning and it was nice actually to see them learning and the process they were involved in as a team. 

[00:08:20]: And they actually really included me in that. Now I- my career background was admin and support services to occupational therapy. So, I knew a little bit about what they were doing, but I found it really interesting. But I was really shocked, like I said, that no one had taken it up. 

[00:08:35]: There's a few posts on the Diabetes UK forum and people have gone through it as well and again, they found it a positive experience. So, I kept looking for other pieces of work going on locally and, somehow, I can't quite remember how I got linked into the local NHS coordinator for the volunteer champions. And we're in the process now setting me up on training, hoping to do the final training next week and the week after. 

[00:08:58]: And it will mean I can go out and talk to others, either virtually or in person locally to try and basically drum up business, get people involved. I've talked on a few of the local Facebook pages trying to get people interested and there is the interest there, but people are scared. They think, will it benefit me? Will they do something I'm not comfortable with? A lot of people think, oh, it's about genetics. It's not necessarily about genetics. 

[00:09:24]: Yes, most with diabetes, we're all at risk and our families are at risk, but a lot of it is they've got a fear about drug trials as well. Huge fear out there about drug trials and it going wrong. 

[00:09:34]: A lot of them don't realize that people are desperately looking for screening tools to prevent people getting worse, genetic sampling and so on, to identify risks and patterns. So, I've kind of taken it on as some, well, my body’s shot. I'm not able to work. They can learn something from me, my experiences, and that's the blunt way of looking at it. 

[00:09:54]: And I'll try and encourage others to do the same. So that's where I'm coming from because the interest they get is mostly people that are at things like cancer risk, genetic risk, heart disease risk. Once they work out their risk isn't relevant, they vanish. Whereas teams are crying out for living volunteers to help protect people down the line in the future.  

Jack [00:10:15]: You've touched on some really interesting points there, and the first point I wanted to address is that I'm really happy that you had a positive experience with your trials and that you felt supported. And thank you as well for explaining what it means to be an NHS research champion for those who weren't sure what this is, and with regards to uptake, I think we'll touch on this a little bit later cause that's a really interesting topic. And also, it's an incredible thing that you are involved in and you should be really proud that you are helping to shape the future of diabetes research with the work that you're doing. 

Jack [00:10:42]: So, we've spoken about some really interesting research and Vicky, I'd like to ask you what are some examples of the most exciting research studies, subjectively to yourself, within diabetes that are ongoing and have occurred or began in recent years? And how significant could they be for the future of diabetes care in the next five to ten plus years? 

Vicky [00:11:04]: Oh my goodness. Where to start? I mean, it's, you know, diabetes affects over half a billion people worldwide. It's a huge problem. But it's also not one disease entity. It's not just either type 1 and type 2. There's a huge amount of heterogeneity in this disease, and we are only just starting to sort of unpick that. 

[00:11:22]: I'm not going to mention any studies by names because I'm definitely going to offend someone by missing them out. But I think probably the best way to answer that is to think it about the big umbrellas of research, and which I think are really sort of important for pushing the boundaries of the way in which we think about diabetes and working towards a cure. 

[00:11:41]: So currently I'm interested in devices to cure type one diabetes and I think in the last 20 years or so, we've seen an explosion in our understanding of the production of mature insulin secreting beta cells from stem cells. And you- you can imagine, you know, a stem cell is essentially the cell that exists when an egg and a sperm come together. That one cell will eventually, nine months later, make a human.

[00:12:08]: That cell is full of limitless potential. It can become any cell in the body, and some of those cells become pancreatic beta cells, which are very, very beautifully developed to sense glucose and secrete insulin. So, what we are trying to do in a laboratory in under 30 days is create a mature, functional beta cell from a stem cell. 

[00:12:31]: In other words, recreate what nature does in humans in nine months, and probably more because we know that there's some more development that goes on after babies are born. So, you can imagine that the work in that field has been truly ground-breaking and when I started my career as a physician, the concept of using stem cell derived beta cells to cure diabetes was almost science fiction. 

[00:12:54]: And you know, I never thought that it would become a clinical reality, and now it's tantalizingly close. And so, I think that's a huge area to be aware of. They're already clinical trials using these kind of cells to-to try to cure diabetes.  

[00:13:09]: Um, second big area, I think you mentioned it earlier, the DIRECT study. When I was taught about type two diabetes, I was taught that it is a disease, which inexorably continues to worsen, and you will go from being diet controlled due to required tablets in insulin, and ultimately it will be associated with complications and poorer life expectancies. 

[00:13:32]: Now, when we see patients with newly diagnosed type 2 diabetes, we need to be thinking about intervening immediately to try to get them into remission. And, as a result of some of the research funded by Diabetes UK, we are now seeing the roll out this year of a national programme to do exactly that. That is a paradigm shift.  

[00:13:53]: I think the other area that's really impressive and will result in a big change in the way in which we think about and diagnose and treat diabetes is in personalised medicine. So, we now know that even in type 1 diabetes, there are different flavours of it. We think of the work that comes out of Exeter showing that people who develop type 1 diabetes when they're very, very young, have a sort of form and presentation of the disease, and that's very different to people who develop type 1 diabetes later in life. 

[00:14:25]: Why does that happen? And certainly, within the umbrella of type two diabetes, we know that that is not one disease that is you know, a very, very, as I said, heterogeneous mix of genetic risk and environmental insults. You know, there are plenty of examples of people living with type 2 diabetes who are not overweight and you know, what's driving that in them? How are they different, for example, from people who developed type 2 diabetes in the setting of obesity? 

[00:14:56]: So I think as we start to understand the genetics and the personal fingerprint of somebody presenting with diabetes, as we start to unpick that, I think undoubtedly that's going to help us then design better personalized treatment strategies for different forms of diabetes. I think that's certainly going to change, I think, in my clinical lifespan.  

[00:15:20]: The other area, which I think is really interesting is in the field of diabetes technologies, as I said, you know, a cell-based cure for type 1 diabetes is not imminent, but we have already seen a sea change in the way in which we've managed diabetes using technologies. 

[00:15:35]: And a great example coming, um, out of the UK was a study that showed the improvement in HbA1C and your ability to self-manage your condition with the addition of continuous glucose monitoring and that kind of study, I mean, we knew it as diabetologists we knew that CGM will help people achieve better sugar control, right.

[00:15:58]: But we needed to prove it in a beautifully conducted national clinical trial. And the reason why that's important is because we can then go to the NHS policy makers and say, fund it. And that's exactly the kind of policy work that DUK and others have been supporting. So, I think, you know, technologies will continue to get ever better. 

[00:16:20]: I do want to mention a couple of other areas which I think are hugely important. Any research into the sociological and psychological elements of living with diabetes are hugely important and often underappreciated and not invested in as well. And you know, we think about, now we talk about the mental load of living with a disease that requires you to think about your body every minute of every day. That's huge. It's something that many people can't really come to terms with.  

[00:16:49]: What are the best ways to engage people to be able to better self-manage their condition? How do we teach doctors, general practitioners to understand all of those elements of diabetes better? So, I think that research is gaining traction. DUK recently have done a huge amount in that area to raise awareness and, and I think it's really, really important.

[00:17:11]: And then the last thing that I wanted to talk about are about healthcare inequalities. So, we live in a country where we have the wonder of the NHS and it's a gift, but you know, we don't get it right all of the time. And the reality is, is that healthcare inequality is as big a problem for diabetes as it is for many other chronic conditions. 

[00:17:31]: And so we are not getting to all elements of the population that we need to serve equally, and we see really big disparities in diabetes outcomes across the country, across different socioeconomic and demographic groups and research into understanding that and how to fix that is hugely, hugely important. 

Jack [00:17:52]: Thanks, Vicky. You've covered so much and it really just shows how much is involved within diabetes research, all the different strands. And one of the points that you mentioned about technology, so for anybody listening that's interested in learning more about that, one of our previous episodes is about technology, so you can go and find that wherever you get your podcasts. 

[00:18:108]: And again, I think it's really interesting you're talking about the emotional and mental support side of things as well. And so we've spoken to thousands of people whose lives are affected by diabetes, and they often tell us that the emotional and mental support side they need is missing. And it could be for all sorts of factors, and it could just be because there's much more understanding now of the emotional toll that it takes on people with diabetes and people affected by diabetes, families, parents. 

[00:18:31]: And it's a really important point. And hopefully in the next few years we'll see an upturn in research into that. So, with you both here, I'd love to get both of your perspectives on what it's like to be involved in a research trial. And so, Sarah, you've already touched on this, how you felt really supported and that's fantastic. So, in terms of the day-to-day when you were involved in trial, what is that like? And also, what is the follow up process like following the completion of a trial?

 Sarah [00:18:55]: So, like I said, it was incredibly supportive. The team, from the minute they touched base with me, they were kind and reassuring. Asking had I questions. Sending more information through on email if I needed it. Attending the hospital, they greeted me at the door. I even met the consultant. He came down, had a chat with me briefly, and then before he came back later on to actually run through the trial with us. 

[00:19:18]: It was just the best process I could have asked for, cause I was thinking, is this gonna be like a clinic appointment? Do I need to be nervous? But no, it was completely different. It was very friendly, it was very inclusive. It was patient focused. They were explaining everything. They generally were excited about the work they were doing. 

[00:19:36]: It was a vascular surgeon that was working with us, so he was absolutely excited. You could see it in his face that this equipment was being rolled out and he was getting to test it. And that passion just kind of rubs off on you. In terms of follow ups, my GP got a report explaining my risk factors. I got a copy, so I've got that to refer to. 

[00:19:57]: I know what my warning signs are now, so I've got feedback on my personal circumstances. And then in December this year, I have another assessment with the equipment again to see has anything changed, so they get to trial equipment twice. To see if it's actually working and picking things up. And then they did a CT scan of my legs as well to do a comparison, and they'll do that again in 12 months at the December point. 

[00:20:20]: So, there's a really inclusive follow up process where they feel they can pick up the changes in my body to try and, not just manage my risk, but to see if this equipment's gonna work for others. And some of it was actually quite funny, like they have these little tiny blood pressure cuffs that go around your little toes and you're just like, is that gonna work? 

[00:20:38]: But when they put it on, it's just like, oh, it is working and I could feel my pulse in the cuff, in the toe, and normally you don't feel your little toes, your small toes, you only feel them when you bang them. And it- dare I say it was close to fun actually seeing that this was happening and working and that it's gonna help them and it's gonna help so many others. 

Jack [00:20:57]: That's fantastic. I'm really glad you've had positive experiences with this. And Vicky, on the flip side, I mean it's really interesting hearing Sarah's insight so someone being involved in a trial and, from a researcher's perspective, what's involved from your side in the process from the beginning of a research project all the way through to recruiting participants to having it published? And what are some of the big challenges throughout the process? 

 Vicky [00:21:19]: Well, I mean with that question you're sort of implying some sort of human trial, either, you know, physiological trial or up testing a new drug. So, that's actually only a very small element of the whole research remit. There are things that are in common for all of us working in diabetes research. The first thing is, you need to get the money to do it, you need to get the funding to do it. 

[00:21:40]: And that's always a competitive process and that's why charities like Diabetes UK are an absolute, you know, lifeline to keeping alive, um, diabetes research in this country. So, there's that early process of coming up with the idea. 

[00:21:57]: That's usually the easy part, but then, you know, persuading somebody to fund it. Once you've got that, there's still a huge amount more planning and thinking that needs to go into starting up any study. You need to go through a very rigorous ethical review process, and that's hugely important to make sure that what you're doing is safe, is just, is ethical and that's when we have a lot of input from our colleagues in the statistics department because actually, you know, it's really important that we get the numbers right, that we recruit enough people so that we know that whatever answer we get at the end is going to be meaningful. Otherwise we waste people's time and, you know, put them unnecessarily through risk. 

[00:22:38]: So, planning, having the right institutional support behind you. You need to have a department, be it an NHS department, and often that's in collaboration with a university or a pharmaceutical body that is providing you with the infrastructure to actually safely undertake your-your study. You need to recruit the right staff, you know, highly trained individuals who are going to actually be able to work with you to deliver. 

[00:23:04]: You know, recruiting people is always a challenge and we've resorted to many different ways, and we can talk about that later, about how best to engage people with the kind of things that we do, making sure that they are well informed that they've gone through the right consent process. So, all of that requires really highly skilled people to make sure that everybody's on board and that we are working towards a really well conducted study because without that, you're not going to get good results. 

[00:23:33]: And then on the other side, once you've done your study, it's about pouring over the data, that's the exciting bit, looking for the results, writing it up and making sure that when you write it up, you're writing it up for the right audience, you know, there's no point in doing research that isn't actually going to fundamentally either change the way we understand diabetes through to changing clinical practice the way we treat it, or at strategy level, changing policy. So it's a long journey, often takes many, many years, but it is a journey that is full of great joy and it's really exciting when we have participants like Sarah who are feeling that joy alongside us.  

Jack [00:24:13]: It's interesting to hear as well, you touch on active participants being such a crucial part of research picking up on Sarah's point as well. And I feel that this is a good time to signpost people to the Diabetes UK website where you can find lots of opportunities for getting involved in research. 

[00:24:25]: And this isn't necessarily just through trials, this is through all sorts of ways, completing surveys or sharing your views with organizations such as Diabetes UK on what you most want to see researched. And Sarah, how important do you think this is that people living with diabetes and people affected by diabetes are afforded this chance to be involved in diabetes research? 

Sarah [00:24:45]: I think it's incredibly important. I follow some of the updates on the volunteer list for the requests coming through from researchers. There is so many amazing projects out there that are in progress, but there's also, they get calls for just reading the bid information that researchers are putting together. 

[00:25:03]: They get the medical blurb and information, but the layman's version so that if I was a participant in the study, that I would get to read, making sure that makes sense when you're recruiting a participant so they know what's expected of them and what the outcome is and what's trying to be achieved. 

[00:25:20]: So the communication on all sides needs to be spot on and you are doing that. Your information on your website is good. You see what studies are active at the moment, what's coming up, and also through your forum. And the more research done on any aspect is amazing. And the more we can recruit and help people to understand how, as a living person with diabetes, whatever type you have, your input is vital. 

[00:25:44]: It may feel that it's not helping you right now, but it's certainly gonna help if there's a genetic risk in your family, maybe not your children, your grandchildren, friends, family, it's protecting them for the future, the services they get from NHS or whatever the NHS grows into, and not the work abroad. 

[00:26:01]: Like when we were at the conference, people were there from all over the world. So, it's not just gonna help people here, it's gonna help the sharing of information. It's got huge potential, especially to helping say poor countries that can't afford to do their own research. I could go on for hours. Sorry Jack [laughs].  

Jack [00:26:19]: Don't apologize. It's all-it's all hugely important issues that you're talking about and brilliant points. 

Jack [00:26:24]: Vicky, you are investigating how a transplanted device might be able to cure type 1. And earlier this year, you received a multimillion-pound award for this project from the Type One Diabetes Grand Challenge. And for those who aren't sure what this is, this is the partnership between Diabetes UK JDRF and the Steve Morgan Foundation, which follows the Steve Morgan Foundation's game changing donation of 50 million pounds into type 1 research in 2022. 

[00:26:47]: So firstly, Vicky, could you explain how important investment is of this scale, and could you also tell us about the project so far and how it's progressing?  

Vicky [00:26:55]: Yeah well, investment of any kind, but particularly of this scale is absolutely fundamental because it allows us to think big and to be really optimistic about what we can achieve. So, the UK has always punched above its weight in terms, you know, this is a relatively small country, but the kind of medical research that comes out of this country is always world-leading and we have got such a marvellous infrastructure here that we need to protect and invest in and continue to grow. 

[00:27:26]: Diabetes is no different in that respect to all of the other big medical problems that still need to be addressed. I think from the point of view of type one diabetes, I think when people think about a cure for type one diabetes, invariably technologies, yes help, but technologies don't, at least at the moment, take away that mental load of thinking about and managing your own metabolism every minute of every day. 

[00:27:51]: So, when people think about a cure, they think about a cell-based cure. So that is a transplant of replacement beta cells or islets into the body to replace what your body's lost and they act then autonomously. You don't need to worry ever again about checking your own sugar and responding with your own dosing of insulin. 

[00:28:12]: So that's what we call a cell-based cure, some form of transplant. And of course, pancreases from people who have sadly died and donate their organs are in very, very limited supply and will not be a cure for most people. The holy grail is a limitless source of islets or beta cells that will come from stem cell sources so these cells that we can grow in the lab and which can be converted into any cell type of the body. 

[00:28:38]: And the big challenge for the last 20 years or so has been to convert those stem cells into functional and mature and long-lasting insulin secreting beta cells and phenomenally, you know, we've come very, very close to achieving that, but actually using those to cure diabetes is still a long way from a reality. 

[00:28:58]: Because any challenge like this is bound to be multidisciplinary, and I think that's where this kind of investment, high level investment and big investment can really be game changing. Because what it does is it brings together the greatest talents and minds from a vast array of disciplines. So, I'm a clinician and I know how to identify patients for a trial and get them involved in trials, and I know what are the clinical requirements of a product. 

[00:29:27]: But I need to work with immunologists so that as we are creating this transplantable product, that that is not going to be rejected by the body the minute we put it in, or that that does not succumb to the same processes that the immune system did in the first place to your beta cells to cause diabetes in the first place. 

[00:29:47]: So I need to work an immunologist. I need to work with a vascular biologist, cuz these cells are hugely demanding. They want glucose because they need glucose to know when to secrete insulin, but they need oxygen and nutrients because they're very metabolically active. So, they need a good blood supply. 

[00:30:03]: So, if I'm to engineer a device that can be transplanted into a patient that needs to have a great blood supply, and I need to work with experts in blood vessels and how to grow them. 

[00:30:13]: And so pulling together that level of expertise and that cross-disciplinary team requires leadership, but it requires time and it requires investment and it requires faith. The kind of faith that the Steve Morgan Foundation and Diabetes UK have placed in us to work on it furiously for the next five years. 

[00:30:35]: So, then you asked me how are things going? I keep on getting asked this. I've only just started like, bear with me. However, that said, we are hugely excited so, you know, we've only just started the project. We have already succeeded. I'm so proud of this, by the way, the most fantastic group of PhD students and postdocs who come from a very, uh, eclectic range of backgrounds, you know, Biologists, biochemists, um, material scientists, chemists. 

[00:31:03]: And we have already managed to grow blood vessels from cells that have been taken from patients with diabetes, so they give us a single blood sample. We can actually extract some cells from that blood sample and grow them in the lab and then use those to actually build brand new blood vessel networks outside the body and that, you can imagine, is already the start, um, of the skeleton and the backbone that we need to then introduce the islets to then be re-transplanted them back into that patient. 

[00:31:37]: And because those cells come from the patient that we're going to treat, they won't get rejected. So that's where we are so far. I think it's already hugely exciting. We can actually see blood flowing through those blood vessels that we're growing in the lab outside the body. Um, and you can imagine that that kind of an advance applies not just to people with diabetes, but you can imagine all sorts of other regenerative medicine approaches that that might be useful for. 

Jack [00:32:04]: As someone with type one diabetes I'm very, of course, excited for any cure research. So, sorry Vicky, for asking you the question that you've probably been asked about 200 times in the last few weeks. Um, I'm also learning to manage my expectations when it comes to a type one cure. And I-I'd love for it to be in my lifetime, but I'd just love to be around when there's that moment, that eureka moment for it. 

[00:32:23]: Sarah, in terms of the research that you are currently involved in and also the research that you're most interested in, what is the future looking like for you, aside from the follow ups that you are currently involved in, what research would you most like to be involved in in the future? 

Sarah [00:32:37]: At the moment, it's mainly around young diabetes because although- because of my situation I can't have children because of, I developed complications with polycystic ovaries and my womb is now pre-cancerous because of that. But I have a stepson whose birth mother is type two diabetic as well. So, he's obviously at risk. 

[00:32:57]: So, at the moment my interest is what services will be there for him as he matures, if he has problems. So that's kind of driving me at the moment. I may not have people to leave as say, a legacy within my family cuz I'm the only child out of all the siblings in my parents' age group. So, it's my interest is what will protect him and his family as he gets older, but also those things that- some of it is a little bit selfish. I'm involved in work that's starting to take off from the Leeds Research Institute that I found through yourselves around podiatry services. 

[00:33:28]: So, if my leg wounds don't heal and get worse, what kind of care can I expect in the next 10, 15 or so years from podiatry services? Because again, that goes back to my risk of peripheral artery problems. I learned through that piece of work what I've got to prepare myself for. So, a little bit selfish, but I'm thinking about future generations as well, because I may not benefit from most of it, but my family will, my step-family will.

[00:33:55]: I'm trying to think of the future for people that are around. My circumstances can't change awfully because I've got masses of complications, like I've got over 30 medical conditions at this point. So, I'm gonna have not a great quality of life, but they can learn from my experience - I guess is where I'm coming from. It's my way of giving back from what I've ended up with. 

Jack [00:34:17]: It’s incredible what you're doing and thank you so much for sharing your story with us and being so honest. And so, my final question to you both is what advice would you give to anybody listening to this that isn't particularly sure about how to get involved with diabetes research, whether they would want to take a step and just learn a little bit more? What are some of the things that they can do? Vicky, if you'd like to go first. 
 
Vicky [00:34:38]: Well, I think it's helpful to understand that getting involved in research doesn't necessarily mean getting involved in a risky clinical trial. The options out there are many and varied, and actually it's just as important for us to hear from you and hear your opinion. 

[00:34:51]: There's no point in me engineering a solution to a problem that doesn't exist. So, there are lots of different ways to get involved in research. I think Sarah speaks really eloquently about some of the personal feedback that you can get from doing it. You know, hopefully you'll feel good about having done it and, dare I say it, you know, if you're involved in a research study with passionate physicians like myself, you probably will get a little bit of extra TLC that you might not normally do from your routine NHS care and that’s always interesting.

[00:35:21]: So, there is, you know, there is some personal upside as well as that warm feeling of having done something good for society. I think, practically speaking, if you want to know what's going on locally to you, because we appreciate it's not always easy to give up your time and, you know, to travel to be involved. Some research can be done online. 

[00:35:39]: But, you know, start looking into local resources, so as well as DUK type resources, like this podcast, and of course all of the magazines and the newsletters that organizations like yourself and other diabetes charities produce, it's a good idea to look on clinicaltrials.gov because that's going to show you active clinical trials in diabetes that are recruiting near you. 

[00:36:04]: And another really good source is to look at your local university or teaching hospital website because often the clinical research facilities in these institutions are always happy to hear from you and get you on their database so that if something comes up that you tick boxed as being of interest to you, be it a survey-based study or, you know, a frank clinical trial, they'll contact you when and if that becomes available. 

Jack [00:36:29]: Fantastic. And Sarah, you've already actually touched on some of the reasons why you do it and some of the advice for people living with diabetes. But on a personal level, what are some of the benefits that you've found from being involved in research and how has it changed the way that you feel about your living with diabetes? 

Sarah [00:36:45]: So, for me, it's given me a bit of a purpose after learning lots of negative diagnoses in a very short time scale. I got three quite serious diagnoses, which were attributed to diabetes in the two, three or four months, and it completely knocked the wind out my sails. But actually, talking to the team, seeing what's going on, actually just the fact that I've got these conditions, it's not the end of the world because I've found a way to put a positive spin on it to pick myself up. 

[00:37:12]: Right, I can't change my circumstances. Someone else can learn from it. Someone else might get a bit of improvement or feedback through it that'll make a difference in a few years’ time or 20, 30, 40 years’ time. If they can document it, it'll be useful so that's where it's benefiting me at the moment. 

[00:37:29]: It's helping myself kind of pick myself up and dust myself off again. The other sources that Vicky's not mentioned, I hope you don't mind me adding, are just ring the local hospital, see if they've got a research unit, if you're not good on the internet. Or go on your forum, there's lots of chat on there about research, either the PhD students, I've posted on there about my feedback. There's others have done the same. There's so many places now you can find out about what's going on and it doesn't have to be invasive. 

Jack [00:37:56]: I think that's really good advice. Vicky, Sarah, it's been absolutely fantastic talking to you both today. Thank you for joining us on the podcast and being so honest and talking about what you're both working on, for sharing your stories about research. Thank you so much for joining us.
  
Sarah [00:38:08]: Thank you, Jack.  

Vicky [00:38:09]: Thank you for having us.
 
Jack [00:38:14]: That's all for this episode of Diabetes Discussions. We hope the conversation has helped you with your own experiences of living with or supporting someone with diabetes. 

[00:38:24]: For more advice and support, search Diabetes UK online or check out the information and links in the episode notes. Don't forget to hit subscribe so you never miss an episode. 

[00:38:34]: And if you like what you've heard, please rate and review to help others discover the podcast. Thanks for listening. See you next time. 

 

If you are affected by the topics discussed then you can call our helpline team on 0345 123 2399, or email us at helpline@diabetes.org.uk 

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Sarah Parsons

 

"As a living person with diabetes, whatever type you have, your input is vital to help protect people down the line in the future." Sarah, who features in our episode about research.

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