Sam: 0:00

For millions of people with diabetes, every morning starts with a calculation. Blood sugar, food, movement, and risk. Each meal is a decision. Every unexpected walk, every stressful moment, every disrupted routine can tip the balance. It's a constant mental load. One in five people in the UK live with diabetes, prediabetes, or undiagnosed type 2. Half will skip at least one appointment because of the stigma, and many still don't get the care processes that could prevent devastating complications. This month's conversation asks what it really takes to change that. Not just new tech or new treatments, but empathy, relationships, better conversations, and giving people the support they need from the moment they're diagnosed. Hello, this is Problems Worth Solving, the podcast where we meet people transforming health and care through human-centred design and digital innovation. I'm Sam Menter, founder and managing director at Healthier, the Collaborative Service Design Consultancy. If you enjoy listening, you can subscribe to this podcast and the accompanying newsletter at healthier.services. Diabetes is one of the biggest health challenges of our time. It affects millions and touches every community. It reveals both the strengths and the cracks in our health system. Today I'm joined by Dr. David Chaney from Diabetes UK, and we're discussing what it really takes to tackle diabetes, how to support people living with the condition, how to address stigma and inequity, and how close collaboration with healthcare professionals is fundamental to creating change. David, thank you so much for joining me today. How would you summarize the big problem you're working to solve?

David: 1:57

Thank you for the opportunity, Sam. I would say the big problem is, as we would say, diabetes. Diabetes is a major challenge for both people who live with diabetes and are at risk of diabetes every day, but also for our health system. When you think of the numbers involved, I could throw big numbers at you, like 4.5 million people across the UK living with diabetes. But actually, something that's probably going to make a bit more sense to everyone as they go about their daily life is that we know that approximately one in five people across the UK are living with diabetes or living with pre-diabetes or have undiagnosed type 2 diabetes. So it's a major challenge that we have to deal with. It also uses up, we estimate, about 10% of the NHS budget. So again, financially is a large burden on the system that we need to tackle.

Sam: 2:53

And why does it also matter socially?

David: 2:56

Socially, living with diabetes is a really difficult thing. It's really complex for people who live with diabetes. So with type 1 diabetes, for example, and there is a difference between them. And I think it's important to stress that at the beginning, with type 1 diabetes, it's an autoimmune condition, which happens to individuals. Type 2 diabetes is a very complex condition as well. And often people will put it down to simply lifestyle or they'll put it down to obesity. But that is not always the case. 30% of people living with type 2 diabetes are not overweight or obese. And so there's a big complexity around type 2 diabetes there as well.

Sam: 3:38

What tells you that the system still isn't working as it should?

David: 3:42

For a start, everybody who lives with diabetes should be receiving their annual care processes. If you look at the NHS, they talk about eight care processes. In England and Wales, we know that approximately 60% of people are receiving those annual care processes. In Scotland, the number is a little bit lower than that. And in Northern Ireland, they don't participate in the National Diabetes Audit. So we actually don't know the figure because we we can't tell. And it's hard to know if you're improving if you haven't got a baseline to work from. In addition to that, we know that depending upon where you live, you may have access to some treatments and not to others. So there's an inequity within the system as well as it stands at this moment in time.

Sam: 4:29

And what's the reason for those low numbers?

David: 4:33

It's multiple. Again, it's not a very simple. It would be great to be able to say, well, it's because the health system isn't geared up to be able to provide the care. In some cases, that is the case. You may not have the workforce that you need to be able to provide the care. So you have a lack of doctors and nurses to be able to provide care. In other cases, it's the way in which we provide care. So there are people who live with diabetes who work. It's not always easy for them to get time off work to go along to be able to have these care processes done. The care processes aren't always done in the one time, in the one clinic. And so therefore it might mean multiple visits for people to come through. Then we know that there are different cultures and different backgrounds of people living across the UK as well. So when you take that into consideration, how we communicate about these care processes to those different communities, that's another complexity as well, because language in itself is very different meaning to different people. And so you might be from a community where you hear a message that doesn't resonate with you. And so you don't actually understand the importance of coming in to have those health checks done. So it's not simple. There's a lot of complexity there, and there are multiple reasons as to why we're we're doing that. And then the COVID didn't help. Prior to COVID, we were achieving at best probably about 70%. And then COVID struck. And that drop, that figure dropped right down to 30%. Now we're back up to 60%. So we're again climbing back up, but we really need to be doing better again. And the aim would be to get to around 90%.

Sam: 6:07

How would you describe diabetes UK's role? Would you say you're more advocates, conveners, partners, or are you challenging the system?

David: 6:15

I'd say that we have multiple roles, if I'm honest. We have to be advocates for people living with diabetes. That's why we're here. But we also have to recognize it's not enough to come in banging the drum and saying you're not doing good enough. We need to be able to bring solutions. We need able to work in partnership to be able to try and find the solutions that work best for people. So we bring lived experience through engagement with our community to be able to bring in so is that whatever changes are made are changes that are going to result in improvement because we know they're based on the reality of living with diabetes. We also do research. So we're looking at what's the best ways, what's the best evidence to be able to underpin what we're talking about and bring in new treatments and new ways of working and new care pathways. So it's there's a multitude, and then we have to campaign.

Sam: 7:04

I'd like to talk a little bit about your personal journey. I'm always curious about what has driven people to the roles that they're doing in their lives. And why is this a problem worth solving for you personally? And what's led you to what you're doing today?

David: 7:18

So I would say now, um, and we've had conversations, so you know I'm passionate about diabetes, and I could talk about diabetes all day long. That wasn't always the case. So I trained originally as a nurse, and when I trained as a nurse, I remember as a student nurse, I hated diabetes if I'm being really honest. It was so complex, it was so difficult to understand. Then I qualified and I work on community, and then my first charge post was of a diabetes board, where I had no option but to go and start looking it up and reading more and more. And then I began to get a passion for it because what I liked about diabetes was the complexity of it and the fact that you needed to take a holistic look at everything and look at the whole person. It wasn't just about a single piece to be able to work and work in partnership with them, to be able to help them to manage their diabetes. It's very much a self-managed condition. It's not about me as a healthcare professional going in and trying to manage it for somebody. The average person living with diabetes gets about two to three hours per year with a healthcare professional. The rest of the time, they are there on their own trying to manage their diabetes, making the decisions and working through every day. During that time, as I say, I built a passion as a charge nurse. Then I specialized within the area, became a diabetes nurse specialist, and then I had the opportunity to go into education where I could educate other specialists and actually work at university level. And whilst there, I was able to undertake a PhD in diabetes as well to be able to look at it. And then I got the opportunity and the privilege to work internationally with the International Diabetes Federation, where I worked with them across the world for about two years and then came to Diabetes UK. I've been here for about 10 years now. So steeped in diabetes, I would say, at this stage, but I don't live with diabetes. And that's the one thing I have to make clear. It's very different to live with diabetes. So I can tell people the stories that I've heard from people who live with diabetes, but I cannot tell you what it's like to live with diabetes.

Sam: 9:20

It sounds like the personal experience of people living with diabetes is a big motivation for the work you're doing.

David: 9:28

Absolutely. And I suppose one of the areas I specialized most in was the area of adolescence. So my PhD was around adolescence and diabetes as well. And they get such a raw deal. They really do. It's bad enough. And I have two children of my own, so I've seen them go up through adolescence, and I know the challenges that exist there. That's hard enough without the complexity of diabetes intruding into your life and actually all the different things that come along with that at that time. For people who live with type two as well, diabetes is such a hard condition to live with, whether you've type 1 or type 2 or gestational diabetes, they are different, but living with them can be really, really hard and really difficult.

Sam: 10:14

Can you give me an example from the people that you've spoken to and your knowledge of diabetes? What's a day in their life like for someone living with diabetes? What decisions and checks fill their day? And what's the emotional and the cognitive load?

David: 10:28

So for someone who lives with type 1 diabetes, they get up in the morning like you or I, they have to check their blood glucose to see. They have a target range, might be between four and eight. And if their blood glucose level comes in above that range, they need to take action, corrective action. But they also need to come down and think about their breakfast. So unlike you or I who just get our breakfast and go a better day, they need to look and see how much carbohydrate's in that breakfast. And they'll have a carbohydrate to insulin ratio. And they have to work out how much insulin they need to give the amount of carbohydrate in their breakfast. They also have to bargain in if their blood glucose was high, how much additional insulin they need to take in order to reduce it back down to get it to where it needs to be. So they do that, they then get ready, and if it's, for example, a young person going out to college, school, or work, they then leave the house. For that day, they normally get the bus, but for some reason they can't get the bus and they decide to walk a bit further. That's unplanned exercise. That has an impact on your glucose level. So again, they have to think about that because they've already given themselves insulin, but now they're doing additional activity. So that can send their blood glucose down lower. So they might need to take some carbohydrate for that. Mid-morning, if they decide to have a snack, if it's over 20 grams of carbohydrate, they might need to take insulin for it. Then you hit lunchtime, they have to look again. If they're going to the gym in the afternoon, they have to bargain that in as they take their lunch and either make adjustments then, or they will have to make adjustments when they're going to do exercise in the afternoon. Then they repeat that process again in the evening time when they have their dinner. And then depending upon their daily routines or their activity, they'll have to adjust in the evening if they're doing something different. It's a constant flow of decisions all the way through the day that they have to make in order to try and keep their blood glucose level to where it needs to be in order to avoid complications or to avoid going low. And when they have a low blood glucose level, they need to take corrective action again for that. If they go low, if they go very low, it can actually have detrimental effects on them because condibly it impairs them as well at that stage, and they might need assistance of someone else. So it's a tight rope, people are walking every day and making decisions. And unfortunately, your body isn't the same every day. Your metabolism doesn't work the same every day. So they might make the same decisions and take the same doses of insulin, but it doesn't mean that you're going to get the same result. And that can be really frustrated. So often for those people, when you do that day in, day out, and you cannot stop doing it, it becomes really stressful. And you get what we call diabetes burnout or diabetes distress. And that becomes really difficult for people. And sometimes you have to work with them to help alleviate that burden and try and help reduce for a period of time some of those actions and support them and then take that back on. For someone with type 2 diabetes, unfortunately, society looks, and because of his lack of understanding of type 2 diabetes, all it sees is people are obese that are overweight, so they get type 2 diabetes. And whilst the obesity is absolutely a risk factor for type 2 diabetes, it is not the be-all and end-all of type 2 diabetes. There is a complex mix of different factors and risk factors that come into play that people have to consider and respect that. And there are genetic components to know. And if you think about someone from a different ethnicity, so someone coming from a black Caribbean, black African or South Asian community, they are two to four times more likely to get type 2 diabetes. And often they are not obese or overweight. And so it just shows the complexity, and yet people hear how the stigma is taught, or they feel the stigma of society. And so when they are diagnosed with type 2 diabetes, often they end up blaming themselves. They think I've caused this to myself, and therefore they might choose not to seek help at that time. And that can be really, really difficult as well, because obviously they need to have the support to be able to get their blood glucose levels right so as to avoid complications for the future. So it's a real complex mix right across communities that we need to think about, and it's a real burden for individuals every day.

Sam: 15:15

It sounds exhausting.

David: 15:17

It is, I'm sure. Uh that's at least what people tell me. They really wish, and the amount of people I've met who have said they really wish they if they one choice and one opportunity would be to get rid of diabetes because it's so impactful on their life.

Sam: 15:34

I mean, long term, can it cause depression?

David: 15:37

Yes, we see a higher level of mental health challenges for people who live with diabetes. That comes in different forms. As I say, you have diabetes distress, you have anxiety, you have depression, and you see that come out through people trying to manage this condition every day as they go along. And they often need support there as well.

Sam: 16:00

You mentioned stigma when you were talking, then, and you've said that stigma is a huge issue. Can you give me some examples of the forms that stigma can take?

David: 16:11

So it's quite interesting when people go out, um, if they're living with type 1 diabetes and they have to inject, and not everybody's on a pump, some people use pens to inject. I've had stories of people coming into me telling me that they were in a restaurant and they took their insulin, they were asked to leave because they were told that we don't do drugs in this restaurant. So it can be there's one form of stigma. People going into clinic who have type 2 diabetes and they stand on the weighing scales because they have to have their weight check when they go in. And I'm sure it's unintentional, but there's a tot or a hymn from the healthcare professionalists away at that particular moment in time, and the to the person they hear that, um, or it might be as simple as a sigh, and the person hears that, and they take that as I haven't done well. Oh, here we go. And we know that 50% of people fail to attend at least one healthcare appointment due to stigma, and feeling that they're stigmatized when they go in. It's all different forms right across with people. And it's we use the term stigma, but if you you ask people, if you're to go and ask people, have you been stigmatized? They're not going to think of it as I've been stigmatized. You need to ask it in the form of when you have diabetes, when you've gone out, do you feel you've been treated differently in any way, or has anybody passed any comment or any judgment? Have you should you be eating that is another one. If you sit down or I sit down to have a meal, does anybody say to us, should you be eating that? But yeah, the amount of people who sit down at a table to have a meal who have diabetes, and the amount of people who feel that they were in their right to say to them, should you be eating that? And that just makes someone feel bad at the end of the day, and they look at it.

Sam: 18:11

Your point about the huge effect that the interaction with the medical professional can have there. That mirrors something Jim McManus was talking about, who from Public Health Worlds, who I was the last person who I interviewed on this podcast, and he was talking about the huge positive effect that the words from his GP had on him personally when it was just a couple of sentences, it was just it was just it was some reassurance, but it's a disproportional effect that it has on his mental well-being. And so what you're describing is the opposite that's having a negative effect on their mental well-being.

David: 18:43

Yeah, it goes both ways. So we have, it's not all doom and gloom. We we have healthcare professionals who are absolutely excellent at what they do. And for the most part, healthcare professionals try their best and do their best to be able to labour a really good and quality service in a system that we know is stretched completely and where time is really difficult. We know they're under time pressure constantly. We also know that the first year of diagnosis, if we get that right and we get diagnosis right, it is crucial. And that time when a healthcare professional has someone in front of them diagnosed with diabetes, they have the opportunity, if they say the right things, to be able to encourage some and to help them to understand the actions that they need to take, we know that has such a positive impact. And it can help people come back and have that engagement with healthcare professionals. As I've said, three hours a year, two to three hours a year. So it's fundamentally the individual who's managing their diabetes. It therefore has to be a partnership. It's not the healthcare professional who's managing the diabetes, it's a partnership whereby the person's managing their diabetes and the healthcare professional is helping them to problem solve to understand their diabetes more and to help to get the best out of what they're doing. So if you look at it in that way and approach it in that way, it can be really, really positive for the individual coming in with diabetes.

Sam: 20:12

Let's turn towards that positivity and progress. Despite the challenges you've described, there's a lot changing in diabetes research, treatment and prevention. I'd love to hear where you see genuine momentum, the innovations or shifts that give you confidence things are moving in the right direction.

David: 20:30

So there is. There's a lot happening. In the last so at 10 to 15 years ago, if you were diagnosed with type 2 diabetes and you came along to me within clinic, I would have been saying to you, you have type 2 diabetes, it is a progressive, lifelong condition. We will try to manage your diabetes, we support you to manage your diabetes through diet and exercise. But what is going to happen is that you are going to go onto a tablet at some stage, we may add in some additional tablets, and then eventually you're going to move on to insulin. And that is the trajectory of diabetes. That narrative has completely changed. We know now that we can place people into remission. We also have prevention programs that are out there so we can identify people who are pre-diabetes, and with the appropriate help and support and access to prevention programs, we know that that helps to at least delay the onset of type 2 diabetes, if not prevent type 2 diabetes going forward in the future. With remission, so the remission penetrations were introduced in 2020 in England, and what they do is they take a calorie-controlled diet for approximately 12 to 16 weeks, um, around 800 calories a day, might vary depending upon the program that you're on, with healthcare professional support, working with the individual, and then what it does reintroduce a balanced diet alongside exercise to help maintain weight. And we've seen since the introduction one-third of people who've gone through the programmes have gone into remission, and that's absolutely fantastic to see. In the original direct study, it was 46% of people. So we know we can even do better than that again. And there was so far 25,000 people have been offered the remission pathway, and it's estimated that if we were to allow people to go on the remission pathway, all people who were diagnosed with type 2 diabetes went on a remission pathway, that the NHS could save as much as 1 billion pounds. So massive change in terms of type 2 diabetes that we've seen going forward. With type 1, we've seen the emergence of immune therapies and we've gained a greater understanding of type 1 diabetes. So we know that there are diabetes type antibodies that form in the blood of someone who's going to go on to develop type 1 diabetes. And so if somebody has two or more of these antibodies, we would say they already have, they're at that very early stage of type 1 diabetes. So everything looks normal, there's no issue. But if you've two or more, you're going to go on to develop type 1 diabetes. You can do that by a simple finger prick test, screening test, to be able to identify those individuals. And now, earlier on in August of this year, MHRA have licensed the first immunotherapy called Tapluzimab, which will be available for people who have those two antibodies who are due to progress to type 1 diabetes, and it will delay progression to type 1 diabetes. And the length of time is estimated in clinical trials that we've seen, it's roughly about two to three years. So it will delay progression to type 1 diabetes in terms of symptomatic type 1, where you require insulin by two to three years. For someone who is 15 years of age, that's massive. Think of the difference of a 15-year-old to an 18-year-old going through school of different things. So it's also showing you that we really are in that progression. So that police map is not currently nice for assessment for its use within the NHS. Does that require national screening? So we need to be able to screen, but like any screening program, if you were to do screening at population level, you have to be able to demonstrate evidence of effectiveness. So at the moment, there is a study there to try and prove the benefit of screening called the ALSA study. And that's looking at those who are at high risk of type 1 diabetes. So it's looking at children between the ages of 3 and 13, where they have a sibling or somebody else who has type 1 diabetes or parent type 1 diabetes, and it's doing screening at that stage to be able to prove the efficacy of screening. And to date, over 30,000 children have been screened. So it's a really difficult one because we you can't just go and do population-level screening and say, oh, they're all doing population-level screen. There really has to be an efficacy and a benefit to doing population-level screening. And we need to look at what's the best route to doing that and how do we do that for people who are at highest risk of type 1 diabetes.

Sam: 25:47

So is prevention starting to slightly reshape the conversation around diabetes?

David: 25:51

It is because we used to talk about preventing type 2 diabetes, and we're now moving into immunotherapies where we talk about preventing type 1 diabetes. Now it's delaying progression at the moment, that's where we've got to. But the future could be prevention of type 1 if we're able to advance on this and have greater research into the future.

Sam: 26:14

What's most exciting or hopeful about where diabetes is heading?

David: 26:18

I've been in diabetes a long time now. I came into diabetes in 1994, so quite a long time. Giving a little bit away about my age there at this stage. But there's been so many advances in the last, I would say, five to ten years when it comes to diabetes, both over in the sphere of type 1 and type 2 diabetes. We've seen the emergence of more prevention programs, of the remission program, of immunotherapies coming forward, but also in the area of technology. And we're seeing insulin pumps being more readily used. So back the first insulin pump, many, many years ago, was developed, believe it or not, in the UK, even though insulin pumps took off more within the US, and now they're more common within the UK over the last number of years. And what they do is with insulin pumps, and we have also sensor technology for blood glucose monitoring. So your flash sensor or your continuous blood glucose monitoring, we see those sensors being able to connect to the pumps. So we're talking about what we call hybrid closed loop. So therefore, it doesn't remove the person completely, if you have type 1 diabetes, out of the equation. You still have to take actions. You still have to, for example, bolus for your meals and do different things like that. But actually, the support is there in terms of the sensor looking at your blood glucose level, communicating with the pump. The algorithm that's set in helps then the pump to take the action necessary to give you the insulin to manage your blood glucose eval. If your blood glucose ladin is falling, it will warn you that it's falling. If it's going up, it will warn you that it's going up. So you're able to take corrective action. And in some instances, the pump, when it's falling, the blood glucose is falling, the pump will switch off. So it's just to try and stop you going too low. So massive change right across the diabetes landscape when it comes to future technologies and future treatments.

Sam: 28:26

In this next section, I talked to David about ways Diabetes UK has been working with healthcare professionals to improve care and outcomes for patients. I first met David through research Healthier has been doing into ways charities and healthcare professionals can build more effective relationships because when those connections work, everyone benefits. We brought together organisations like Diabetes UK, Breast Cancer Now, Macmillan, and Alzheimer's Society to share what actually works in practice. We've published the insight in a paper that you can download at healthier.services forward slash HCP. That's Healthier, spelt H-E-A-L-T-H I A. We've talked about scientific and social progress, but change doesn't happen without the people actually delivering the care. I'd like to focus now on the healthcare professionals and how they're supported, what motivates them, and what you've learned about engaging them in improving diabetes care. What's the experience like for healthcare professionals caring for patients with diabetes? And you've got direct experience of this.

David: 29:38

I have as a healthcare professional and also as a lecturer in nursing as well, teaching both pre registration and post registration nurses. I suppose when you look at the curriculum of any medical or healthcare profession, there is an awful lot to fit in. And so when you bring diabetes in, and if you look at it for a nurse three years training, They get very little across that three years. They might get two, three hours on diabetes specifically. That makes it really difficult when they come out because they're trying to care for people and understand as they go. And often it's learning more. And the person who's sitting in the bed with the condition is more expert sometimes in their condition than the nurse who's actually supporting them. And so it's really challenging for that individual. And then you've specialist nurses, of course, who have that greater knowledge, they want to learn more afterwards. Similarly with medics, it's about understanding, and then you have to get the advice of others who are more experienced within that area. And you've just heard me talk about how treatments have changed and pumps have come in. So you can imagine someone admitted to hospital with an insulin pump and coming in who's used to using their insulin pump. You now have them in an environment where all medications that we give out are controlled. They're in a drug try, they're kept in safe places for safety reasons, and they have to be prescribed in order to be able to be administered. And so sometimes what happens is someone comes in with an insulin pump. Nurses on the wards are not used to insulin pumps. It's not something that they would have been engaged with previously. And they're trying to keep this person safe. And it's getting better. Now, in a lot of cases, we'll say to the person, right, you continue to manage your insulin pump and look after your diabetes, and just you need to keep us informed as to what you're doing, and we need to have it prescribed in that way. But for a period of time, what was happening was people were having their pumps removed because people didn't understand pumps, and it was frightening to have someone in who had control of a pump with insulin in it on a ward, and nurses have to double check insulin all the time to make sure before they give it to somebody, and this was going on. So it's a real balance to be struck around all of this for healthcare professionals who are trying to learn more and more whilst things are changing constantly. And as I say, diabetes is one condition, they're dealing with strokes, they're dealing with heart attacks, they're doing multiple scrosis doing many different conditions right across the board spectrum. And so if you're not specialist within that area, it can prove quite challenging. To help change happen, but in care, it takes a lot of energy. And in a system that is so big, if you imagine the NHS as like a big tanker, to turn it and to get it to change takes time. We used to have best practice libraries at Diabet UK where we went around, we understood and supported to be able to get the best practice to write it up so that we could share that best practice with people, with other healthcare professionals, to help them to understand what might work best or what they could introduce within their clinic or their healthcare environment. And what we found was that was great. But healthcare professionals don't often get the opportunity to go on a course that helps them to understand how best to influence, how best to start that change, how best to lead that change. And so we decided then, about a decade ago now, it's about 10 years ago, we started the Clinical Champions Program. And then following that, subsequently, we started discovering leadership. And the whole idea behind those programs were to offer that practical support. So to bring healthcare professionals together, recognizing that they were the agents of change, and to help them understand how they might influence and to understand change more, and understand what it takes to lead change, and how you can do that at a small, medium, and large level, and what that requires. And to bring them together as a group, to coach them, to help them, and where they had that peer network for support as well. And that has made a massive difference. We've seen multiple changes happen within the system at a local level because people now have the confidence, and a lot of it is about confidence. I was at one of our recent clinical champions away days, where we brought our most recent cohort together. And what I heard coming out of the conversation was this program had helped them build the confidence that they needed to build to be able to have the conversations and to know how to approach change to start to get that change to happen within their own clinic environments, within the areas that they practiced. But we have seen people who've gone through these programs advance in their career, and some of them have become some of the lead clinicians across the UK and have been able to influence more change. So by investing in healthcare professionals and supporting them, we believe that it really does give us a massive return on that investment because we see the change that happens across the system.

Sam: 35:16

How do you make time for this when everyone in the system already feels overstretched?

David: 35:20

Really good question. It's really difficult. There's no easy answer to it. And we can, as an organization, try and do it in such a way that we're not taking people out of practice lots of time. We have to balance the time we ask them to come away from an away day with the time that we get them to do some stuff online. And sometimes they have to do that during lunchtime seminars, and sometimes they have to do it after work. And some of the people who come are that dedicated that they actually come and take annual leave and doing their own time as well. So it's not always about the system necessarily releasing them. So we can be motivated as an organization, but we rely on our healthcare professionals who we know nobody goes in to become a doctor, a nurse, a dietitian, a podiatrist, a pharmacist. Nobody goes in for an easy job. People go in because they're dedicated and they want to see change happen and they want to support people. And so quite often, when they're given the opportunity to avail of a program of work like this, aid discovering leadership or cultural champions, we have actually an over-subscription of people looking to do it. And we can only take a certain number at any given time. And so we have to go through an interview process, and people are willing to put the work in outside of their normal working hours.

Sam: 36:44

You've also built online CPD and training. And how are you tackling gaps in education and culture like stigma?

David: 36:51

So we build that into our CPD modules. So our CPD modules, again, because as I say earlier, we recognize that for healthcare professionals, diabetes forms a small part of their training towards registration, and that they still have to continue to learn beyond registration. So we, as a result of that, have worked with healthcare professionals and with people living with diabetes to create small bite-sized modules healthcare professionals can complete online in their own time to help them to understand diabetes more and more. So that's about like a consultation, how best to manage a consultation with a person living with diabetes, and building in elements of stigma and understanding around that into those modules. And trying to get those approved by, for example, the Ryle College of Nursing for CPD for healthcare professionals as well.

Sam: 37:48

I love the idea of paired learning you mentioned there. So both patients and professionals learning together how to get more from consultations. It's not something I've heard about before. Can you tell me a bit more about this and where it came from?

David: 38:00

Well, diabetes is a partnership. I said that at the at the beginning. You the healthcare professional can't manage diabetes without the individual living with diabetes. And the individual who's living with diabetes needs the healthcare professional to be able to understand what's likely to work best for them. So when you look at that, it's important that we get both perspectives into a conversation. We have our CPD modules there for healthcare professionals. We have our learning zone, which is a digital education platform for people living with diabetes. What we're trying to do now is say, okay, what are we putting on our CPD module? So for example, if I use consultation as that, if we're putting something on the CPD module for healthcare professionals to learn how to best to approach a consultation, equally, we should be putting something then on the platform that's aimed at people with diabetes, how to get the best out of your consultation. Both of them are coming in. So both being able to bring in and be focused on that consultation is likely to result in a better outcome for both individuals concerned. A healthcare professional gets to feel, I've done a good job there. I feel really happy how I've been able to support that individual. And the individual living with diabetes gets to be able to go away with the information they need that they came in seeking to be able to integrate diabetes more successfully into their life. So that paired learning is really important. We've built services and systems in the past that have not worked because we built them around the model that worked for the NHS, not necessarily around the model that's worked for the people living with the condition. So it's really important for any service development and future service development to have lived experience at the heart of that development. So that you understand what is most likely to work for that community. If you think about those from poverty backgrounds or those from different ethnicities and how they access services, often their vices are not the vices that are heard the loudest. And so when a new service is being built and we go out for consultation, NHS goes out for consultation, you hear very loud vices. And quite often those loud vices come from communities who are quite well educated, quite well able to vice their concerns and their opinions. And so as a result, a service is set up and it might be set up in an area whereby those people then can access that service quite easily. And for the other part of the community whose vice hasn't been able to be heard as frequently, who might live in the private areas, it may be more difficult for them to actually access the service because of where it's being placed. So we need to actively seek to involve and ensure that we have representation from right across the community to get the right solution if we're going to enable people to be able to access the services that we're providing.

Sam: 41:08

You often talk about relationships as the engine of change. I'd like to talk a bit about the wider system that surrounds the professionals and the communities. Let's explore how those connections between organizations and the trust that underpins them can turn good ideas into transformation. Why do you think relationships are key to making change stick?

David: 41:28

Because if you don't have a relationship, you cannot start a conversation. If you cannot start a conversation, you cannot talk about the problem. And you need to be able to discuss the problem and to work in partnership. And to work in partnership, you need to build a relationship to try and find a solution. So that's really, really important. Without those relationships, people are just on their own trying to find solutions to what might not be the same common problem, or it may be the same common problem, and they're trying to find different solutions. Coming together, putting people's heads together, and bringing the experience that we all have together is likely to result in a better outcome. And we've seen that happen. So the system is a complex system. The health system is a complex system, which is going through change, yet again, with the likes of the NHS England moving into the Department of Health, with the new neighborhood health coming in, those with the 10-year plan. And that's just in England. And in England, we have integrated care boards. In Scotland, we have health boards and integrated giant boards underneath those health boards. In Wales, we've health boards, where in Northern Ireland, we've health and social care trusts. So they're not all the same. It's quite different, it's quite complex. And building relationships with key people who have the ability to make change is really important. If we think about an example of that, we've worked within the Southwest with Cornwall Integrated Care Board to that problem we identified earlier, where we recognized that not everybody was receiving their care processes for diabetes, their annual care processes. We worked with them to try and set up what they called diabetes superclinics. And these were clinics that were delivered outside of normal working hours, recognizing that people work and they might not be able to access the clinics. And they also were built around 30-minute appointments. And they were built so that people could access all of the care processes during that appointment on that one occasion when they visited and came in. What happened was they ran a clinic and they got 300 people coming to that clinic to be able to look at care processes. As a result of that, they were able to reduce waiting times, they're able to address some of the health inequalities that they saw. And it was a really, really good success. That's been written up and it's been shared across other areas. And we're hoping to move forward to see similar initiatives right across different areas. But again, that came about because both Diabetes UK and our representatives there, so Phaedra then and the Southwest, working with colleagues in Cornwall ICB and bringing in people from lived experience with diabetes, putting the heads together to say, what are the issues? What's the problem we're trying to solve here? And what's most likely to succeed? And coming up with an initiative which was a really good success. So success stories like that show you why it's so important that we hold those relationships.

Sam: 44:47

Did you call that co-design when you were doing it?

David: 44:50

I'm not sure if they called it co-design, but that's exactly what it was at the end of the day. And it's important that we do do that, that we bring people together around the table. I know there's lots of different terminologies out there through co-design, co-production, all of that. That's what we need to bring in. To me, what's more important is making sure that we have all the people that we need around the table to get the right answer that's likely to succeed. And I recently heard I was in a conversation with someone, and the term fail came up when something fails. And it was turned into quite a nice acronym, which it's not a failure, it's a first attempt in learning. Oh, I haven't heard that before. That's a good acronym. I thought that was a really good acronym, a first attempt in learning, because we're not going to succeed the first time every time. And we need to recognize that. And we might need to tweak something or change something. So we simply come back, we regroup, and we say what went well, what didn't go well, and how do we learn from it.

Sam: 45:56

There's a massive aversion to failure in healthcare because of the implications of it. It's such a serious risk if something goes wrong. Whereas in other sectors, there's perhaps more appetite for failure and learning, where it's just not in the it's not in the medical mindset to fail.

David: 46:12

Absolutely. And that you can understand why. Thinking about medications, thinking about all of that, you you cannot just say, well, we'll try that. You have to go through rigorous trials, rigorous tests to be able to come up with medication. But service provision, we know we need to try different things. And so when you put it into a service provision, it's important that we try. And you'll have heard the term fail fast. So we're going to fall fail. Let's fail fast, learn from it, and change and move and find. If you don't try, you'll never know. You have to try with service provision to understand what worked well, what didn't work well. Research. Lots of PhDs. I did a PhD, lots of people do PhDs. They don't necessarily come out with wonderful things at the end of it. What we come out with is knowing whether something worked or it didn't work. And if it didn't work, well, that gives us more knowledge that something didn't work and what might work in the future.

Sam: 47:09

What have you learned about what makes pilots turn into real change, sustainable change?

David: 47:15

So there's no point in setting something up that is absolutely so divorced from the norm, requiring so much more resource that it's never going to happen. You have to look at the reality of the system that we have, the resource that's available, and what is possible. Because you're not suddenly going to get lots more healthcare professionals. You're not suddenly going to get lots more different resources. So you have to try and say, working within the confines of that, what can we do to best achieve the outcome we're trying to achieve? So that when you come to integrate it as normal business as usual, it might be a diversion of different existing resources, it might be a change around, but you're not asking for major new influxes of money because we the money just isn't there at this moment in time. So you have to work within the confines of what you've got if you truly want to make this land within that. There will be an opportunity for greater investment, absolutely, at various different points in time. But you can't always rely on the grace of investment. If we if everyone living with diabetes had a healthcare professional within 24 hours a day to tell them, hell, this is how it works. Let's guide you, let's support you. But the reality is that's not going to happen. So you have to look at what's real life and try and build a pilot around what is likely to be able to be sustainable for the future.

Sam: 48:51

And you say that's not going to happen. That leads nicely on to the next bit of the conversation where I want to talk about technology and AI and then the kind of opportunities around that side of things. I mean, can you envisage a future where there isn't an AI healthcare professional who's with you the whole time, knows your blood sugar levels and so on and so forth, and can throughout the day make recommendations?

David: 49:13

AI is interesting. I think it has so many opportunities there for support, absolutely. And I'm aware that there are young people using AI at this moment in time to help them counsel, for example, and they'll go in and they're using it in that way. Not sure how successful has been, I'm not sure if there's been any research into it, but I do think it will have a part to play in the future of being able to support people absolutely. I think we just need to be really careful, and we need to make sure that we have the right parameters around AI to allow it to support but safely support. And there's a challenge at the moment because it's not always geographically controlled. So, therefore, we know that people are asking about diabetes and they're getting answers, and the answers may not pertain to what's available within the UK, they may pertain to what's available within the US. And the systems are very different. So we just need to be really, really careful. I think there is an absolute part to play of AI. We can see it in helping us to set up algorithms for future treatments and helping us put in that way. And if you look at the work, even it was one of the works I forgot to mention earlier on of Andrew Hattersley in Exeter with his team. We can now we know that medications don't work the same for every person. And so they've been able to build an algorithm based around various different medications for type 2 diabetes that allows a GP, when someone comes in and sits in front of them, to put in certain data in respect of the individual, whether it be whether they're male or female, whether it be in terms of their age, lots of different things, their weight. And then the algorithm, which has been thoroughly researched, will come forward with what is likely to be the best medication for that individual. Now, if you think of how you advance that and if you use AI to be able to help you advance that even further and build in future medications, yes, absolutely. If you think of AI reminding people to check their blood glucose level, to do various different things or to support them at times when they're they're going low or going high, to remind them how to do that at that particular moment in time. Absolutely. And there may be further advances, I have no doubt. But one of the biggest challenges we have around AI at this moment in time is called disintermediation. So people go on and they look for information naturally about diabetes when they've been diagnosed. And AI is what they're using nowadays, and AI will give them back answers. And sometimes AI has hallucinations, so it doesn't give correct answers, and sometimes it gives answers that are not relevant for the system that they're in. And we know that even though there's a little number that comes up after the information it gives you, whether it's a one or a two or three, that less than 3% click that number. And that's where the information came from. So people are happy to get the information, but not necessarily always happy to see where the information came from, to make sure that the source is accurate and is correct as well. For us as an organization, it means that if people go to AI, they don't often come to us. They might just take the information from AI, it may not be accurate. We'd prefer them to come to us directly to be able to access the information because we know that the information we're given has been clinically checked, is trusted, and is accurate, and to be able to give that to them. So I think there is a balance within AI with suggests at this moment in time.

Sam: 52:56

Diabetes UK historically has invested heavily in like there's a fantastic content section on your website which is clinically proven and tested with people. Are you seeing the numbers of people accessing that reducing as they're going through GPT?

David: 53:13

Yeah, so we've over 1,500 pages of clinically approved information to be able to support people. And with AI, we've seen a reduction in the number of people coming through, as have many other organizations and many other charities. It's probably been around this year, about 25%. So it's quite significant. And people go into AI for the information, which isn't, as I say, always accurate. There's a part to be played for AI, absolutely, but we just need to be really, really careful about that.

Sam: 53:42

How do you feel about all that information being sucked up into the AI systems, whether it's GBT, Claude, or the these other systems? Having invested millions in it over the years as an organization, is there an altruistic you just want the information to be out there and get to as many people as possible? But conversely, does it mean that actually people aren't aren't becoming aware of some of the other support and services that your organization can offer?

David: 54:05

Yeah, absolutely. So, first and foremost, if I could get that our information at the hands of everybody who has pre-diabetes, who's at risk of diabetes or is living with diabetes, that would be an absolute welcome opportunity. So, really, as you say, from an altruistic point of view, that's what we want to do. And the fact that we've invested in it, that's fine. That's our job, that's our role to do that. The challenge is if we don't build relationships with people, they're unaware of the other services like our helpline, like our learning zone, like our forum, like our local support groups, our other information that we can get, that we can send out. So they're not getting the full benefit from us as a charitable organization and the support that we can offer to them. Equally, that doesn't allow us to build a relationship with people. And we know that when we build a relationship with people, we help and support them, they often will want to then support us. So if we see that reduction and people support of us, the money and the support they give us is what allows us to create the information that we get to them. So there's a potential knock-on impact for us and for every other charity that if the money reduces coming in, or if we don't see the fundraising that we can do, because that's what we rely on, is our fundraising that comes from people, then we won't be able to do or continue to do what we do currently. And so it's really important that we try and address the disintermediation and try and find ways to reach people to be able to offer them support, but equally so that in the future people will see our value and be able to offer us support so that we can continue to offer those services to people.

Sam: 55:52

Do you have views on how we keep the kind of the digital side of things more human?

David: 55:57

I think the one thing that we've seen, and it was interesting within the pandemic, because you heard it, we all had to go digital in the pandemic. It really forced us to go digital. And what we've witnessed is that people still value connection with other people. So it's great what you can get out of digital and online. It's fantastic. But that human connection, that connection with others, is so valuable for people. And you can't always get that through a computer or through online learning. So we offer our peer support groups, our local support groups, and we see them do really, really well because they offer that space for people to come together and be able to chat to each other and do that. So I think the other thing we need to remember is that there are communities that are digitally excluded for various different reasons. Some because if they're older, they don't necessarily understand the technology, it's not what they've grown up with. And that will change as the years go on because obviously, as communities grow up, now they're more digitally enabled. So they they will become the future digital generations. But there's also things that we've heard around when you look at poverty, people who are data poor. So yes, they might have a mobile phone, but they don't have sufficient funds to be able to get data on that mobile phone. So they're excluded again from accessing. So I think we just need to be careful that there's a balance to be struck again still to ensure that we have equity of access for people, that they're able to access and access the support that is best for them. Some people will love going in to an online platform, some people will hate it. Some people will love going to a forum, some people will hate it, some people will love ringing someone to get that advice and support, some people won't like to do that. Some people will love going into a group of people to be able to talk and feel that they are supportive of that group. We have to have and maintain, I would suggest, the various different avenues over to meet the different needs of people.

Sam: 58:05

You talked earlier a bit about diagnosis and the importance of that kind of first phase of care after diagnosis. So the first days and weeks can set the tone for everything that follows. I'd love to hear about the Diagnosis Connect initiative that I've been reading about and its potential for reimagining that early experience. Can you tell me a bit more about how that might work and why it's important?

David: 58:27

So Keir Starmer announced it in Civil Society earlier in July, I think it was. It'd been in conversations. I suppose we started this a couple of years ago at Diabetes UK, working with Asthma Lung UK and Mind, where we had an idea and we'd approached the government at that stage to say, at time of diagnosis, it's a really crucial time for people. And it's a time when they will really get most value from support. And we recognize that there are different types of support that people need. So they absolutely need the support of healthcare professionals, be able to help them to understand their condition and adjust their medication, all of that. But they also need support to learn how to live with diabetes. And so the idea was that at diagnosis, someone would be referred directly to the charity when they're diagnosed their condition to be able to get that support. For various different reasons, change of government and all, it seemed to fall off a little bit. And then we went to the Richmond Group and we had a conversation with the Richmond Group, which is a group of 14 major charities across the UK. And the Richmond Group have taken it forward to work with the department and with the government to show how it could be integrated into the 10 year plan. And as a result of those conversations, Sir Curstarmer announced that it was an initiative that they were moving forward with. Primary care and it'll be in different phases, but the first phase is for primary care conditions, and we are going to try and it's the alpha is the way they're describing it. So it's the beginning, okay, and we will have two or three conditions in the alpha phase, and they're primary care diagnosed at the time of diagnosis. The person who's diagnosed will receive a text message or a message signposting them to the charity that offers support for their condition. So for diabetes, for example, if you were diagnosed with type 2 diabetes, you would then receive a communication by text signposting you to us, Diabetes UK, from your GP surgery. That means you can then click in and access our resources, you land with us, and we will bring you on a journey with us to be able to ensure that you have the support that you need to integrate diabetes successfully into your life, or to send you on the remission pathway. Or if you're diagnosed with pre-diabetes, to help you to access a prevention program, for example, different things that will support you on the journey that are relevant to you. So really, really fantastic opportunity. It's surprising that we haven't had this in the past. You would imagine that anyone diagnosed would automatically be referred to the charity that deals with that condition, but that's not always been the case because healthcare professionals haven't always had access to that information for a start to be able to do it. And we know the time pressures they're already under as well. The ideal would be for this to happen automatically. So once your diagnosis is put in to the GP system, it triggers that automatic notification and signposting to us, and then we can support you. So really is what I would say one of the best initiatives I've seen in all the time I've worked at Diabetes UK.

Sam: 1:01:56

How would you summarize the potential for impact?

David: 1:02:00

Oh, it's massive. If you think about it, that first year of diagnosis, the amount of stories I've heard from people who come to us three or four years after diagnosis, and they say, if only I'd have known you existed when I was first diagnosed, I would be so different now. I would have better control. I would not feel alone, I would not feel isolated. So I think in the outset, it will help with building confidence for people to be able to manage their diabetes. It will help them to have a greater understanding and to understand how it is to live and to have access to others who live with the condition, which hopefully in the longer term will mean we will see a reduction in the devastating complications of diabetes, such as renal failure, amputation, blindness, all of those complications that can happen as a result of park control. And hopefully we will support people to be able to avoid them in the future.

Sam: 1:02:56

It sounds like quite a simple concept, although it's going system-wide. What did it take to actually get buy-in from government and the NHS?

David: 1:03:05

In fairness, I think it took for us as the charitable organizations to come together to say, let's pull this together and demonstrate what this could mean for people, and then to go in and to put exactly what you've said, the simple route and mechanism by which this can happen to the department. Once they saw that, I think they saw the value of what we were proposing, and then were quickly interested in being able to follow that through. So it was about getting to the right people, like we were talking about earlier on with the influencing and leadership, to be able to put the case, the business case, forward to show what could this could result in. And then what happened was they were able to then take that forward and move it forward.

Sam: 1:03:50

Before we close, I'd like to step back from the specifics a bit and reflect on leadership and motivation. You've worked across so many parts of the system, education, clinical care, partnerships. What have you learned that keeps people going and what gives you hope for the future?

David: 1:04:07

That's really interesting. So what people what keeps people going, keeps people coming into work every day, is their ability to make a difference. That doesn't matter whether you're a clinician, whether you're someone who works in a charity, whether you're someone who works in education, the impact that you can have and going in to do that job to the 100% of your ability is what keeps people going. They go in there because they're motivated to do so. My hope for the future, I suppose, is to achieve what we're setting out to achieve as diabetes UK, which is a world where diabetes can do no harm. And that may come in the form of a cure and may come in the form of various different treatments that come forward, which are even better than the ones we've got now. But I think ultimately at the end of the day, the ambition of any charitable organization, uh health charity, is to actually do themselves out a job, to not need to exist. That's the ideal. And it sounds cliche, but that is the real, the ideal in respect of that, because that would mean you've achieved your goal, you've got the cure. It's no longer a debilitating, horrible condition that people have to live with, and it's in the past.

Sam: 1:05:29

What qualities or mindsets do you think we need more of in the in the system to make change happen?

David: 1:05:34

Good question. An openness to having conversations and to be able to have dialogue that allows you to see opportunity and then the confidence to be able to lead and work to take those opportunities forward, I think are really, really important. Just because, and sometimes people can get tied back in, but there's not money, there's no money, there's no this. I worked when I worked as a diabetes nurse specialist, we had a clinic where we used to bring children in to clinic, and they'd all come in the morning time with their parents, and they'd have their blood drawn and sent to the lab, and then they had to go off for a little while and wait until the blood results came to, and then they'd be seen in clinic, and then the blood results would be in. And we simply changed the system. What we did was we taught each parent how to do a finger prick sample for their HBA1C, and we sent it out in the post to them two weeks before their clinic appointment, and they sent the sample back direct to the lab. And then the lab did, and then we issued clinic appointments. So they were no longer coming in the morning, they were coming at a clinic appointment to be seen at the clinical appointment. They weren't spending all day at the clinic, they had the clinic appointment, we had the result, and they were able to discuss that with them, and they were able to leave. That didn't cost any additional money, and actually it saved an awful lot of time of a lot of people and respected that. So sometimes it's not about the money, but it's the way the system works and how you can change to do things to support people.

Sam: 1:07:20

If you could fix one thing tomorrow, a policy, a mindset, a system behavior, what would that be?

David: 1:07:28

The understanding that people have around diabetes and especially type 2 diabetes to try and address the stigma. Stigma is such a challenge for people who live with type 2 diabetes and type 1 diabetes, both. And it really impacts them in their ability to be able to get the care they need and their ability to be able to manage their condition as they live every day.

Sam: 1:08:04

Thank you, David. The one question I like to close on in these interviews is what's one thing that you know to be true that others might not agree with? And it doesn't have to be health or system related. I'm just curious.

David: 1:08:20

To have successful change requires all the various different players to be at the table. Now everyone would agree with that. But I think it absolutely is needed because you risk missing something out if you don't. And while she might say we've succeeded, actually, how much more would you have succeeded if you have taught her that additional thing within the mix? So I think making sure that you have everyone around the table when you had that conversation to understand going forward.

Sam: 1:08:55

Diagnosis Connect being a great example.

David: 1:08:58

Yes.

Sam: 1:09:00

Brilliant. David, thank you so much for taking the time to speak to us today. I've really enjoyed the conversation.

David: 1:09:06

Well, thank you. That's been really, really good.

Sam: 1:09:27

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