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00:00:05.120For millions of people with diabetes, every morning starts with a calculation.
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00:00:08.640Blood sugar, food, movement, and risk.
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00:00:10.800Each meal is a decision.
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00:00:16.559Every unexpected walk, every stressful moment, every disrupted routine can tip the balance.
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00:00:18.960It's a constant mental load.
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00:00:25.920One in five people in the UK live with diabetes, prediabetes, or undiagnosed type 2.
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00:00:34.399Half will skip at least one appointment because of the stigma, and many still don't get the care processes that could prevent devastating complications.
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00:00:39.679This month's conversation asks what it really takes to change that.
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00:00:50.000Not just new tech or new treatments, but empathy, relationships, better conversations, and giving people the support they need from the moment they're diagnosed.
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00:01:06.079Hello, this is Problems Worth Solving, the podcast where we meet people transforming health and care through human-centred design and digital innovation.
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00:01:12.319I'm Sam Menter, founder and managing director at Healthier, the Collaborative Service Design Consultancy.
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00:01:19.040If you enjoy listening, you can subscribe to this podcast and the accompanying newsletter at healthier.services.
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00:01:26.079Diabetes is one of the biggest health challenges of our time.
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00:01:28.879It affects millions and touches every community.
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00:01:32.879It reveals both the strengths and the cracks in our health system.
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00:01:34.560Today I'm joined by Dr.
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00:01:50.480David 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.
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00:01:53.599David, thank you so much for joining me today.
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00:01:57.359How would you summarize the big problem you're working to solve?
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00:01:59.359Thank you for the opportunity, Sam.
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00:02:03.519I would say the big problem is, as we would say, diabetes.
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00:02:12.319Diabetes 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.
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00:02:21.039When you think of the numbers involved, I could throw big numbers at you, like 4.5 million people across the UK living with diabetes.
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00:02:38.080But 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.
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00:02:41.360So it's a major challenge that we have to deal with.
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00:02:47.039It also uses up, we estimate, about 10% of the NHS budget.
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00:02:53.360So again, financially is a large burden on the system that we need to tackle.
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00:02:56.000And why does it also matter socially?
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00:03:01.199Socially, living with diabetes is a really difficult thing.
00:03:01.199 -->
00:03:04.000It's really complex for people who live with diabetes.
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00:03:08.159So with type 1 diabetes, for example, and there is a difference between them.
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00:03:16.319And I think it's important to stress that at the beginning, with type 1 diabetes, it's an autoimmune condition, which happens to individuals.
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00:03:20.240Type 2 diabetes is a very complex condition as well.
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00:03:26.479And often people will put it down to simply lifestyle or they'll put it down to obesity.
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00:03:28.719But that is not always the case.
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00:03:34.00030% of people living with type 2 diabetes are not overweight or obese.
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00:03:38.319And so there's a big complexity around type 2 diabetes there as well.
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00:03:41.840What tells you that the system still isn't working as it should?
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00:03:48.479For a start, everybody who lives with diabetes should be receiving their annual care processes.
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00:03:52.000If you look at the NHS, they talk about eight care processes.
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00:03:59.919In England and Wales, we know that approximately 60% of people are receiving those annual care processes.
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00:04:03.840In Scotland, the number is a little bit lower than that.
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00:04:08.479And in Northern Ireland, they don't participate in the National Diabetes Audit.
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00:04:12.240So we actually don't know the figure because we we can't tell.
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00:04:16.079And it's hard to know if you're improving if you haven't got a baseline to work from.
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00:04:24.800In addition to that, we know that depending upon where you live, you may have access to some treatments and not to others.
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00:04:29.360So there's an inequity within the system as well as it stands at this moment in time.
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00:04:32.480And what's the reason for those low numbers?
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00:04:34.079It's multiple.
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00:04:35.920Again, it's not a very simple.
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00:04:41.600It 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.
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00:04:44.160In some cases, that is the case.
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00:04:48.399You may not have the workforce that you need to be able to provide the care.
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00:04:51.920So you have a lack of doctors and nurses to be able to provide care.
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00:04:54.639In other cases, it's the way in which we provide care.
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00:04:57.519So there are people who live with diabetes who work.
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00:05:03.199It's not always easy for them to get time off work to go along to be able to have these care processes done.
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00:05:08.079The care processes aren't always done in the one time, in the one clinic.
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00:05:11.839And so therefore it might mean multiple visits for people to come through.
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00:05:17.439Then we know that there are different cultures and different backgrounds of people living across the UK as well.
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00:05:30.560So 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.
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00:05:35.600And so you might be from a community where you hear a message that doesn't resonate with you.
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00:05:40.240And so you don't actually understand the importance of coming in to have those health checks done.
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00:05:41.759So it's not simple.
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00:05:46.399There's a lot of complexity there, and there are multiple reasons as to why we're we're doing that.
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00:05:48.639And then the COVID didn't help.
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00:05:52.399Prior to COVID, we were achieving at best probably about 70%.
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00:05:54.959And then COVID struck.
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00:05:57.920And that drop, that figure dropped right down to 30%.
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00:06:00.160Now we're back up to 60%.
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00:06:04.160So we're again climbing back up, but we really need to be doing better again.
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00:06:06.480And the aim would be to get to around 90%.
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00:06:10.240How would you describe diabetes UK's role?
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00:06:15.439Would you say you're more advocates, conveners, partners, or are you challenging the system?
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00:06:18.639I'd say that we have multiple roles, if I'm honest.
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00:06:21.360We have to be advocates for people living with diabetes.
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00:06:22.560That's why we're here.
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00:06:27.600But we also have to recognize it's not enough to come in banging the drum and saying you're not doing good enough.
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00:06:29.040We need to be able to bring solutions.
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00:06:34.160We need able to work in partnership to be able to try and find the solutions that work best for people.
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00:06:47.360So 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.
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00:06:49.680We also do research.
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00:06:59.839So 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.
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00:07:03.839So it's there's a multitude, and then we have to campaign.
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00:07:07.360I'd like to talk a little bit about your personal journey.
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00:07:11.839I'm always curious about what has driven people to the roles that they're doing in their lives.
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00:07:16.000And why is this a problem worth solving for you personally?
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00:07:18.319And what's led you to what you're doing today?
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00:07:26.639So 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.
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00:07:28.160That wasn't always the case.
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00:07:35.279So 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.
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00:07:38.160It was so complex, it was so difficult to understand.
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00:07:49.040Then 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.
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00:08:00.480And 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.
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00:08:08.639It 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.
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00:08:11.439It's very much a self-managed condition.
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00:08:16.639It's not about me as a healthcare professional going in and trying to manage it for somebody.
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00:08:23.040The average person living with diabetes gets about two to three hours per year with a healthcare professional.
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00:08:30.240The rest of the time, they are there on their own trying to manage their diabetes, making the decisions and working through every day.
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00:08:33.759During that time, as I say, I built a passion as a charge nurse.
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00:08:44.879Then 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.
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00:08:50.000And whilst there, I was able to undertake a PhD in diabetes as well to be able to look at it.
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00:09:00.720And 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.
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00:09:02.720I've been here for about 10 years now.
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00:09:08.159So steeped in diabetes, I would say, at this stage, but I don't live with diabetes.
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00:09:10.480And that's the one thing I have to make clear.
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00:09:12.799It's very different to live with diabetes.
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00:09:20.080So 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.
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00:09:27.759It sounds like the personal experience of people living with diabetes is a big motivation for the work you're doing.
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00:09:28.799Absolutely.
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00:09:33.600And I suppose one of the areas I specialized most in was the area of adolescence.
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00:09:37.200So my PhD was around adolescence and diabetes as well.
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00:09:39.120And they get such a raw deal.
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00:09:40.080They really do.
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00:09:41.039It's bad enough.
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00:09:46.879And I have two children of my own, so I've seen them go up through adolescence, and I know the challenges that exist there.
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00:09:57.600That'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.
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00:10:13.440For 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.
00:10:14.000 -->
00:10:19.039Can you give me an example from the people that you've spoken to and your knowledge of diabetes?
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00:10:22.879What's a day in their life like for someone living with diabetes?
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00:10:24.960What decisions and checks fill their day?
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00:10:28.559And what's the emotional and the cognitive load?
00:10:28.879 -->
00:10:37.279So 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.
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00:10:41.120They have a target range, might be between four and eight.
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00:10:46.559And if their blood glucose level comes in above that range, they need to take action, corrective action.
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00:10:49.519But they also need to come down and think about their breakfast.
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00:10:57.600So 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.
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00:11:00.720And they'll have a carbohydrate to insulin ratio.
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00:11:05.840And they have to work out how much insulin they need to give the amount of carbohydrate in their breakfast.
00:11:05.840 -->
00:11:15.440They 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.
00:11:15.440 -->
00:11:24.720So 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.
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00:11:31.279For 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.
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00:11:33.360That's unplanned exercise.
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00:11:35.840That has an impact on your glucose level.
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00:11:43.360So again, they have to think about that because they've already given themselves insulin, but now they're doing additional activity.
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00:11:46.000So that can send their blood glucose down lower.
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00:11:49.200So they might need to take some carbohydrate for that.
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00:11:55.919Mid-morning, if they decide to have a snack, if it's over 20 grams of carbohydrate, they might need to take insulin for it.
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00:11:59.279Then you hit lunchtime, they have to look again.
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00:12:09.679If 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.
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00:12:14.399Then they repeat that process again in the evening time when they have their dinner.
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00:12:22.320And then depending upon their daily routines or their activity, they'll have to adjust in the evening if they're doing something different.
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00:12:37.919It'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.
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00:12:42.960And when they have a low blood glucose level, they need to take corrective action again for that.
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00:12:53.600If 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.
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00:12:58.960So it's a tight rope, people are walking every day and making decisions.
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00:13:03.120And unfortunately, your body isn't the same every day.
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00:13:06.080Your metabolism doesn't work the same every day.
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00:13:13.679So 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.
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00:13:16.320And that can be really frustrated.
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00:13:26.879So often for those people, when you do that day in, day out, and you cannot stop doing it, it becomes really stressful.
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00:13:31.360And you get what we call diabetes burnout or diabetes distress.
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00:13:33.919And that becomes really difficult for people.
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00:13:43.840And 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.
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00:13:58.480For 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.
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00:14:07.759And 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.
00:14:07.759 -->
00:14:16.320There is a complex mix of different factors and risk factors that come into play that people have to consider and respect that.
00:14:16.320 -->
00:14:18.720And there are genetic components to know.
00:14:18.720 -->
00:14:32.080And 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.
00:14:32.080 -->
00:14:35.840And often they are not obese or overweight.
00:14:35.840 -->
00:14:44.879And so it just shows the complexity, and yet people hear how the stigma is taught, or they feel the stigma of society.
00:14:44.879 -->
00:14:50.320And so when they are diagnosed with type 2 diabetes, often they end up blaming themselves.
00:14:50.320 -->
00:14:56.559They think I've caused this to myself, and therefore they might choose not to seek help at that time.
00:14:56.559 -->
00:15:06.240And 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.
00:15:06.240 -->
00:15:15.440So 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.
00:15:15.840 -->
00:15:17.440It sounds exhausting.
00:15:17.759 -->
00:15:19.679It is, I'm sure.
00:15:19.679 -->
00:15:21.919Uh that's at least what people tell me.
00:15:21.919 -->
00:15:33.679They 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.
00:15:34.000 -->
00:15:36.960I mean, long term, can it cause depression?
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00:15:44.320Yes, we see a higher level of mental health challenges for people who live with diabetes.
00:15:44.320 -->
00:15:46.000That comes in different forms.
00:15:46.000 -->
00:15:55.519As 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.
00:15:55.519 -->
00:15:58.159And they often need support there as well.
00:16:00.720 -->
00:16:06.960You mentioned stigma when you were talking, then, and you've said that stigma is a huge issue.
00:16:06.960 -->
00:16:11.039Can you give me some examples of the forms that stigma can take?
00:16:11.360 -->
00:16:20.879So 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.
00:16:20.879 -->
00:16:35.360I'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.
00:16:35.360 -->
00:16:38.480So it can be there's one form of stigma.
00:16:38.480 -->
00:16:48.000People 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.
00:16:48.000 -->
00:17:09.519And 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.
00:17:09.519 -->
00:17:10.799Oh, here we go.
00:17:10.799 -->
00:17:23.279And 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.
00:17:23.279 -->
00:17:27.839It's all different forms right across with people.
00:17:27.839 -->
00:17:34.160And 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?
00:17:34.160 -->
00:17:37.039They're not going to think of it as I've been stigmatized.
00:17:37.039 -->
00:17:45.759You 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?
00:17:45.759 -->
00:17:48.799Have you should you be eating that is another one.
00:17:48.799 -->
00:17:54.400If you sit down or I sit down to have a meal, does anybody say to us, should you be eating that?
00:17:54.400 -->
00:18:05.599But 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?
00:18:05.599 -->
00:18:10.880And that just makes someone feel bad at the end of the day, and they look at it.
00:18:11.440 -->
00:18:17.119Your point about the huge effect that the interaction with the medical professional can have there.
00:18:17.119 -->
00:18:39.200That 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.
00:18:39.200 -->
00:18:43.440And so what you're describing is the opposite that's having a negative effect on their mental well-being.
00:18:43.839 -->
00:18:45.200Yeah, it goes both ways.
00:18:45.200 -->
00:18:47.839So we have, it's not all doom and gloom.
00:18:47.839 -->
00:18:52.720We we have healthcare professionals who are absolutely excellent at what they do.
00:18:52.720 -->
00:19:07.039And 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.
00:19:07.039 -->
00:19:09.440We know they're under time pressure constantly.
00:19:09.440 -->
00:19:16.720We also know that the first year of diagnosis, if we get that right and we get diagnosis right, it is crucial.
00:19:16.720 -->
00:19:32.160And 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.
00:19:32.160 -->
00:19:37.200And it can help people come back and have that engagement with healthcare professionals.
00:19:37.200 -->
00:19:40.799As I've said, three hours a year, two to three hours a year.
00:19:40.799 -->
00:19:45.599So it's fundamentally the individual who's managing their diabetes.
00:19:45.599 -->
00:19:48.799It therefore has to be a partnership.
00:19:48.799 -->
00:20:04.880It'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.
00:20:04.880 -->
00:20:12.240So 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.
00:20:12.720 -->
00:20:16.000Let's turn towards that positivity and progress.
00:20:16.000 -->
00:20:21.839Despite the challenges you've described, there's a lot changing in diabetes research, treatment and prevention.
00:20:21.839 -->
00:20:29.279I'd love to hear where you see genuine momentum, the innovations or shifts that give you confidence things are moving in the right direction.
00:20:30.079 -->
00:20:30.799So there is.
00:20:30.799 -->
00:20:31.759There's a lot happening.
00:20:31.759 -->
00:20:46.720In 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.
00:20:46.720 -->
00:20:53.839We will try to manage your diabetes, we support you to manage your diabetes through diet and exercise.
00:20:53.839 -->
00:21:03.920But 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.
00:21:03.920 -->
00:21:07.119And that is the trajectory of diabetes.
00:21:07.119 -->
00:21:11.279That narrative has completely changed.
00:21:11.279 -->
00:21:15.200We know now that we can place people into remission.
00:21:15.200 -->
00:21:37.359We 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.
00:21:37.359 -->
00:22:07.759With 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.
00:22:07.759 -->
00:22:18.880And 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.
00:22:18.880 -->
00:22:24.079In the original direct study, it was 46% of people.
00:22:24.079 -->
00:22:27.759So we know we can even do better than that again.
00:22:27.759 -->
00:22:48.400And 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.
00:22:48.400 -->
00:22:56.079So massive change in terms of type 2 diabetes that we've seen going forward.
00:22:56.079 -->
00:23:06.000With type 1, we've seen the emergence of immune therapies and we've gained a greater understanding of type 1 diabetes.
00:23:06.000 -->
00:23:15.759So 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.
00:23:15.759 -->
00:23:26.720And 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.
00:23:26.720 -->
00:23:29.119So everything looks normal, there's no issue.
00:23:29.119 -->
00:23:34.400But if you've two or more, you're going to go on to develop type 1 diabetes.
00:23:34.400 -->
00:23:42.240You can do that by a simple finger prick test, screening test, to be able to identify those individuals.
00:23:42.240 -->
00:24:02.400And 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.
00:24:02.400 -->
00:24:08.400And the length of time is estimated in clinical trials that we've seen, it's roughly about two to three years.
00:24:08.400 -->
00:24:17.200So it will delay progression to type 1 diabetes in terms of symptomatic type 1, where you require insulin by two to three years.
00:24:17.200 -->
00:24:22.400For someone who is 15 years of age, that's massive.
00:24:22.400 -->
00:24:28.720Think of the difference of a 15-year-old to an 18-year-old going through school of different things.
00:24:28.720 -->
00:24:32.079So it's also showing you that we really are in that progression.
00:24:32.079 -->
00:24:39.440So that police map is not currently nice for assessment for its use within the NHS.
00:24:39.440 -->
00:24:42.400Does that require national screening?
00:24:42.400 -->
00:24:54.160So 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.
00:24:54.160 -->
00:25:02.400So at the moment, there is a study there to try and prove the benefit of screening called the ALSA study.
00:25:02.400 -->
00:25:06.559And that's looking at those who are at high risk of type 1 diabetes.
00:25:06.559 -->
00:25:22.079So 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.
00:25:22.079 -->
00:25:26.319And to date, over 30,000 children have been screened.
00:25:26.319 -->
00:25:35.279So 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.
00:25:35.279 -->
00:25:39.920There really has to be an efficacy and a benefit to doing population-level screening.
00:25:39.920 -->
00:25:46.720And 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.
00:25:47.039 -->
00:25:51.519So is prevention starting to slightly reshape the conversation around diabetes?
00:25:51.839 -->
00:26:01.599It 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.
00:26:01.599 -->
00:26:05.680Now it's delaying progression at the moment, that's where we've got to.
00:26:05.680 -->
00:26:14.400But the future could be prevention of type 1 if we're able to advance on this and have greater research into the future.
00:26:14.720 -->
00:26:18.480What's most exciting or hopeful about where diabetes is heading?
00:26:18.799 -->
00:26:20.720I've been in diabetes a long time now.
00:26:20.720 -->
00:26:24.799I came into diabetes in 1994, so quite a long time.
00:26:24.799 -->
00:26:27.440Giving a little bit away about my age there at this stage.
00:26:27.440 -->
00:26:40.160But 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.
00:26:40.160 -->
00:26:50.480We've seen the emergence of more prevention programs, of the remission program, of immunotherapies coming forward, but also in the area of technology.
00:26:50.480 -->
00:26:54.160And we're seeing insulin pumps being more readily used.
00:26:54.160 -->
00:27:08.480So 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.
00:27:08.480 -->
00:27:15.759And what they do is with insulin pumps, and we have also sensor technology for blood glucose monitoring.
00:27:15.759 -->
00:27:23.039So your flash sensor or your continuous blood glucose monitoring, we see those sensors being able to connect to the pumps.
00:27:23.039 -->
00:27:26.240So we're talking about what we call hybrid closed loop.
00:27:26.240 -->
00:27:33.119So therefore, it doesn't remove the person completely, if you have type 1 diabetes, out of the equation.
00:27:33.119 -->
00:27:34.880You still have to take actions.
00:27:34.880 -->
00:27:39.759You still have to, for example, bolus for your meals and do different things like that.
00:27:39.759 -->
00:27:47.759But actually, the support is there in terms of the sensor looking at your blood glucose level, communicating with the pump.
00:27:47.759 -->
00:27:55.759The 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.
00:27:55.759 -->
00:27:59.359If your blood glucose ladin is falling, it will warn you that it's falling.
00:27:59.359 -->
00:28:02.000If it's going up, it will warn you that it's going up.
00:28:02.000 -->
00:28:04.240So you're able to take corrective action.
00:28:04.240 -->
00:28:09.519And in some instances, the pump, when it's falling, the blood glucose is falling, the pump will switch off.
00:28:09.519 -->
00:28:12.799So it's just to try and stop you going too low.
00:28:12.799 -->
00:28:22.400So massive change right across the diabetes landscape when it comes to future technologies and future treatments.
00:28:26.000 -->
00:28:34.400In this next section, I talked to David about ways Diabetes UK has been working with healthcare professionals to improve care and outcomes for patients.
00:28:34.400 -->
00:28:45.759I 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.
00:28:45.759 -->
00:28:55.680We brought together organisations like Diabetes UK, Breast Cancer Now, Macmillan, and Alzheimer's Society to share what actually works in practice.
00:28:55.680 -->
00:29:03.359We've published the insight in a paper that you can download at healthier.services forward slash HCP.
00:29:03.359 -->
00:29:08.559That's Healthier, spelt H-E-A-L-T-H I A.
00:29:08.559 -->
00:29:21.039We've talked about scientific and social progress, but change doesn't happen without the people actually delivering the care.
00:29:21.039 -->
00:29:30.160I'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.
00:29:30.160 -->
00:29:35.680What's the experience like for healthcare professionals caring for patients with diabetes?
00:29:35.680 -->
00:29:37.599And you've got direct experience of this.
00:29:38.000 -->
00:29:45.680I have as a healthcare professional and also as a lecturer in nursing as well, teaching both pre registration and post registration nurses.
00:29:45.680 -->
00:29:54.319I suppose when you look at the curriculum of any medical or healthcare profession, there is an awful lot to fit in.
00:29:54.319 -->
00:30:02.720And 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.
00:30:02.720 -->
00:30:07.279They might get two, three hours on diabetes specifically.
00:30:07.279 -->
00:30:13.519That makes it really difficult when they come out because they're trying to care for people and understand as they go.
00:30:13.519 -->
00:30:15.200And often it's learning more.
00:30:15.200 -->
00:30:24.079And 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.
00:30:24.079 -->
00:30:27.599And so it's really challenging for that individual.
00:30:27.599 -->
00:30:32.319And then you've specialist nurses, of course, who have that greater knowledge, they want to learn more afterwards.
00:30:32.319 -->
00:30:40.160Similarly with medics, it's about understanding, and then you have to get the advice of others who are more experienced within that area.
00:30:40.160 -->
00:30:45.119And you've just heard me talk about how treatments have changed and pumps have come in.
00:30:45.119 -->
00:30:53.839So you can imagine someone admitted to hospital with an insulin pump and coming in who's used to using their insulin pump.
00:30:53.839 -->
00:30:59.519You now have them in an environment where all medications that we give out are controlled.
00:30:59.519 -->
00:31:06.880They'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.
00:31:06.880 -->
00:31:11.440And so sometimes what happens is someone comes in with an insulin pump.
00:31:11.440 -->
00:31:14.720Nurses on the wards are not used to insulin pumps.
00:31:14.720 -->
00:31:18.240It's not something that they would have been engaged with previously.
00:31:18.240 -->
00:31:20.960And they're trying to keep this person safe.
00:31:20.960 -->
00:31:23.119And it's getting better.
00:31:23.119 -->
00:31:35.839Now, 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.
00:31:35.839 -->
00:31:56.000But 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.
00:31:56.000 -->
00:32:06.079So 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.
00:32:06.079 -->
00:32:16.640And 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.
00:32:16.640 -->
00:32:21.200And so if you're not specialist within that area, it can prove quite challenging.
00:32:21.200 -->
00:32:28.079To help change happen, but in care, it takes a lot of energy.
00:32:28.079 -->
00:32:37.119And 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.
00:32:37.119 -->
00:32:59.359We 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.
00:32:59.359 -->
00:33:02.880And what we found was that was great.
00:33:02.880 -->
00:33:16.079But 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.
00:33:16.079 -->
00:33:23.839And so we decided then, about a decade ago now, it's about 10 years ago, we started the Clinical Champions Program.
00:33:23.839 -->
00:33:28.640And then following that, subsequently, we started discovering leadership.
00:33:28.640 -->
00:33:34.559And the whole idea behind those programs were to offer that practical support.
00:33:34.559 -->
00:33:55.920So 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.
00:33:55.920 -->
00:34:05.519And to bring them together as a group, to coach them, to help them, and where they had that peer network for support as well.
00:34:05.519 -->
00:34:08.480And that has made a massive difference.
00:34:08.480 -->
00:34:17.199We'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.
00:34:17.199 -->
00:34:24.960I was at one of our recent clinical champions away days, where we brought our most recent cohort together.
00:34:24.960 -->
00:34:48.559And 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.
00:34:48.559 -->
00:35:02.639But 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.
00:35:02.639 -->
00:35:15.760So 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.
00:35:16.079 -->
00:35:20.400How do you make time for this when everyone in the system already feels overstretched?
00:35:20.880 -->
00:35:22.079Really good question.
00:35:22.079 -->
00:35:23.440It's really difficult.
00:35:23.440 -->
00:35:25.360There's no easy answer to it.
00:35:25.360 -->
00:35:33.679And 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.
00:35:33.679 -->
00:35:40.000We 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.
00:35:40.000 -->
00:35:46.239And sometimes they have to do that during lunchtime seminars, and sometimes they have to do it after work.
00:35:46.239 -->
00:35:52.480And some of the people who come are that dedicated that they actually come and take annual leave and doing their own time as well.
00:35:52.480 -->
00:35:56.960So it's not always about the system necessarily releasing them.
00:35:56.960 -->
00:36:10.159So 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.
00:36:10.159 -->
00:36:13.199Nobody goes in for an easy job.
00:36:13.199 -->
00:36:19.039People go in because they're dedicated and they want to see change happen and they want to support people.
00:36:19.039 -->
00:36:33.519And 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.
00:36:33.519 -->
00:36:36.639And we can only take a certain number at any given time.
00:36:36.639 -->
00:36:43.920And so we have to go through an interview process, and people are willing to put the work in outside of their normal working hours.
00:36:44.320 -->
00:36:47.599You've also built online CPD and training.
00:36:47.599 -->
00:36:51.440And how are you tackling gaps in education and culture like stigma?
00:36:51.920 -->
00:36:54.639So we build that into our CPD modules.
00:36:54.639 -->
00:37:09.679So 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.
00:37:09.679 -->
00:37:26.400So 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.
00:37:26.400 -->
00:37:40.000So 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.
00:37:40.000 -->
00:37:48.239And trying to get those approved by, for example, the Ryle College of Nursing for CPD for healthcare professionals as well.
00:37:48.639 -->
00:37:51.039I love the idea of paired learning you mentioned there.
00:37:51.039 -->
00:37:55.760So both patients and professionals learning together how to get more from consultations.
00:37:55.760 -->
00:37:57.760It's not something I've heard about before.
00:37:57.760 -->
00:38:00.480Can you tell me a bit more about this and where it came from?
00:38:00.880 -->
00:38:03.119Well, diabetes is a partnership.
00:38:03.119 -->
00:38:04.800I said that at the at the beginning.
00:38:04.800 -->
00:38:10.320You the healthcare professional can't manage diabetes without the individual living with diabetes.
00:38:10.320 -->
00:38:18.000And the individual who's living with diabetes needs the healthcare professional to be able to understand what's likely to work best for them.
00:38:18.000 -->
00:38:24.239So when you look at that, it's important that we get both perspectives into a conversation.
00:38:24.239 -->
00:38:27.840We have our CPD modules there for healthcare professionals.
00:38:27.840 -->
00:38:33.119We have our learning zone, which is a digital education platform for people living with diabetes.
00:38:33.119 -->
00:38:37.440What we're trying to do now is say, okay, what are we putting on our CPD module?
00:38:37.440 -->
00:38:57.280So 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.
00:38:57.280 -->
00:38:59.199Both of them are coming in.
00:38:59.199 -->
00:39:08.480So both being able to bring in and be focused on that consultation is likely to result in a better outcome for both individuals concerned.
00:39:08.480 -->
00:39:12.000A healthcare professional gets to feel, I've done a good job there.
00:39:12.000 -->
00:39:15.360I feel really happy how I've been able to support that individual.
00:39:15.360 -->
00:39:24.719And 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.
00:39:24.719 -->
00:39:27.840So that paired learning is really important.
00:39:27.840 -->
00:39:42.960We'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.
00:39:42.960 -->
00:39:50.719So it's really important for any service development and future service development to have lived experience at the heart of that development.
00:39:50.719 -->
00:39:56.639So that you understand what is most likely to work for that community.
00:39:56.639 -->
00:40:11.280If 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.
00:40:11.280 -->
00:40:19.199And so when a new service is being built and we go out for consultation, NHS goes out for consultation, you hear very loud vices.
00:40:19.199 -->
00:40:29.039And quite often those loud vices come from communities who are quite well educated, quite well able to vice their concerns and their opinions.
00:40:29.039 -->
00:40:38.960And 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.
00:40:38.960 -->
00:40:53.760And 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.
00:40:53.760 -->
00:41:08.400So 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.
00:41:08.960 -->
00:41:12.400You often talk about relationships as the engine of change.
00:41:12.400 -->
00:41:17.519I'd like to talk a bit about the wider system that surrounds the professionals and the communities.
00:41:17.519 -->
00:41:24.719Let's explore how those connections between organizations and the trust that underpins them can turn good ideas into transformation.
00:41:24.719 -->
00:41:28.400Why do you think relationships are key to making change stick?
00:41:28.800 -->
00:41:32.960Because if you don't have a relationship, you cannot start a conversation.
00:41:32.960 -->
00:41:37.440If you cannot start a conversation, you cannot talk about the problem.
00:41:37.440 -->
00:41:41.679And you need to be able to discuss the problem and to work in partnership.
00:41:41.679 -->
00:41:45.920And to work in partnership, you need to build a relationship to try and find a solution.
00:41:45.920 -->
00:41:48.320So that's really, really important.
00:41:48.320 -->
00:42:00.400Without 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.
00:42:00.400 -->
00:42:08.960Coming together, putting people's heads together, and bringing the experience that we all have together is likely to result in a better outcome.
00:42:08.960 -->
00:42:10.480And we've seen that happen.
00:42:10.480 -->
00:42:12.719So the system is a complex system.
00:42:12.719 -->
00:42:28.719The 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.
00:42:28.719 -->
00:42:30.480And that's just in England.
00:42:30.480 -->
00:42:33.440And in England, we have integrated care boards.
00:42:33.440 -->
00:42:38.320In Scotland, we have health boards and integrated giant boards underneath those health boards.
00:42:38.320 -->
00:42:43.599In Wales, we've health boards, where in Northern Ireland, we've health and social care trusts.
00:42:43.599 -->
00:42:45.840So they're not all the same.
00:42:45.840 -->
00:42:48.320It's quite different, it's quite complex.
00:42:48.320 -->
00:42:54.800And building relationships with key people who have the ability to make change is really important.
00:42:54.800 -->
00:43:13.519If 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.
00:43:13.519 -->
00:43:19.599We worked with them to try and set up what they called diabetes superclinics.
00:43:19.599 -->
00:43:29.360And 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.
00:43:29.360 -->
00:43:33.360And they also were built around 30-minute appointments.
00:43:33.360 -->
00:43:42.800And 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.
00:43:42.800 -->
00:43:53.920What happened was they ran a clinic and they got 300 people coming to that clinic to be able to look at care processes.
00:43:53.920 -->
00:44:01.679As a result of that, they were able to reduce waiting times, they're able to address some of the health inequalities that they saw.
00:44:01.679 -->
00:44:04.559And it was a really, really good success.
00:44:04.559 -->
00:44:07.519That's been written up and it's been shared across other areas.
00:44:07.519 -->
00:44:13.920And we're hoping to move forward to see similar initiatives right across different areas.
00:44:13.920 -->
00:44:33.199But 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?
00:44:33.199 -->
00:44:35.760What's the problem we're trying to solve here?
00:44:35.760 -->
00:44:38.159And what's most likely to succeed?
00:44:38.159 -->
00:44:41.599And coming up with an initiative which was a really good success.
00:44:41.599 -->
00:44:47.039So success stories like that show you why it's so important that we hold those relationships.
00:44:47.360 -->
00:44:50.079Did you call that co-design when you were doing it?
00:44:50.639 -->
00:44:56.239I'm not sure if they called it co-design, but that's exactly what it was at the end of the day.
00:44:56.239 -->
00:45:00.719And it's important that we do do that, that we bring people together around the table.
00:45:00.719 -->
00:45:06.079I know there's lots of different terminologies out there through co-design, co-production, all of that.
00:45:06.079 -->
00:45:07.920That's what we need to bring in.
00:45:07.920 -->
00:45:15.199To 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.
00:45:15.199 -->
00:45:22.559And I recently heard I was in a conversation with someone, and the term fail came up when something fails.
00:45:22.559 -->
00:45:32.000And it was turned into quite a nice acronym, which it's not a failure, it's a first attempt in learning.
00:45:32.000 -->
00:45:33.199Oh, I haven't heard that before.
00:45:33.199 -->
00:45:34.159That's a good acronym.
00:45:34.159 -->
00:45:42.239I thought that was a really good acronym, a first attempt in learning, because we're not going to succeed the first time every time.
00:45:42.239 -->
00:45:43.760And we need to recognize that.
00:45:43.760 -->
00:45:46.239And we might need to tweak something or change something.
00:45:46.239 -->
00:45:52.159So we simply come back, we regroup, and we say what went well, what didn't go well, and how do we learn from it.
00:45:56.000 -->
00:46:00.480There's a massive aversion to failure in healthcare because of the implications of it.
00:46:00.480 -->
00:46:04.320It's such a serious risk if something goes wrong.
00:46:04.320 -->
00:46:12.000Whereas 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.
00:46:12.320 -->
00:46:13.199Absolutely.
00:46:13.199 -->
00:46:16.159And that you can understand why.
00:46:16.159 -->
00:46:21.920Thinking about medications, thinking about all of that, you you cannot just say, well, we'll try that.
00:46:21.920 -->
00:46:26.880You have to go through rigorous trials, rigorous tests to be able to come up with medication.
00:46:26.880 -->
00:46:31.920But service provision, we know we need to try different things.
00:46:31.920 -->
00:46:36.320And so when you put it into a service provision, it's important that we try.
00:46:36.320 -->
00:46:39.199And you'll have heard the term fail fast.
00:46:39.199 -->
00:46:40.800So we're going to fall fail.
00:46:40.800 -->
00:46:44.960Let's fail fast, learn from it, and change and move and find.
00:46:44.960 -->
00:46:47.840If you don't try, you'll never know.
00:46:47.840 -->
00:46:52.800You have to try with service provision to understand what worked well, what didn't work well.
00:46:52.800 -->
00:46:54.000Research.
00:46:54.000 -->
00:46:55.440Lots of PhDs.
00:46:55.440 -->
00:46:57.920I did a PhD, lots of people do PhDs.
00:46:57.920 -->
00:47:01.280They don't necessarily come out with wonderful things at the end of it.
00:47:01.280 -->
00:47:04.320What we come out with is knowing whether something worked or it didn't work.
00:47:04.320 -->
00:47:09.519And if it didn't work, well, that gives us more knowledge that something didn't work and what might work in the future.
00:47:09.920 -->
00:47:15.360What have you learned about what makes pilots turn into real change, sustainable change?
00:47:15.760 -->
00:47:29.119So 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.
00:47:29.119 -->
00:47:39.280You have to look at the reality of the system that we have, the resource that's available, and what is possible.
00:47:39.280 -->
00:47:44.639Because you're not suddenly going to get lots more healthcare professionals.
00:47:44.639 -->
00:47:48.719You're not suddenly going to get lots more different resources.
00:47:48.719 -->
00:47:56.880So 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?
00:47:56.880 -->
00:48:15.840So 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.
00:48:15.840 -->
00:48:22.639So you have to work within the confines of what you've got if you truly want to make this land within that.
00:48:22.639 -->
00:48:28.719There will be an opportunity for greater investment, absolutely, at various different points in time.
00:48:28.719 -->
00:48:32.239But you can't always rely on the grace of investment.
00:48:32.239 -->
00:48:39.199If we if everyone living with diabetes had a healthcare professional within 24 hours a day to tell them, hell, this is how it works.
00:48:39.199 -->
00:48:40.880Let's guide you, let's support you.
00:48:40.880 -->
00:48:42.639But the reality is that's not going to happen.
00:48:42.639 -->
00:48:51.199So 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.
00:48:51.840 -->
00:48:53.280And you say that's not going to happen.
00:48:53.280 -->
00:49:02.159That 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.
00:49:02.159 -->
00:49:12.639I 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?
00:49:13.199 -->
00:49:14.559AI is interesting.
00:49:14.559 -->
00:49:19.199I think it has so many opportunities there for support, absolutely.
00:49:19.199 -->
00:49:28.800And 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.
00:49:28.800 -->
00:49:39.199Not 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.
00:49:39.199 -->
00:49:51.519I 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.
00:49:51.519 -->
00:49:57.280And there's a challenge at the moment because it's not always geographically controlled.
00:49:57.280 -->
00:50:09.679So, 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.
00:50:09.679 -->
00:50:12.400And the systems are very different.
00:50:12.400 -->
00:50:14.559So we just need to be really, really careful.
00:50:14.559 -->
00:50:17.840I think there is an absolute part to play of AI.
00:50:17.840 -->
00:50:24.079We can see it in helping us to set up algorithms for future treatments and helping us put in that way.
00:50:24.079 -->
00:50:31.280And 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.
00:50:31.280 -->
00:50:37.519We can now we know that medications don't work the same for every person.
00:50:37.519 -->
00:50:59.599And 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.
00:50:59.599 -->
00:51:08.320And then the algorithm, which has been thoroughly researched, will come forward with what is likely to be the best medication for that individual.
00:51:08.320 -->
00:51:16.079Now, 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.
00:51:16.079 -->
00:51:29.519If 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.
00:51:29.519 -->
00:51:30.480Absolutely.
00:51:30.480 -->
00:51:33.119And there may be further advances, I have no doubt.
00:51:33.119 -->
00:51:38.880But one of the biggest challenges we have around AI at this moment in time is called disintermediation.
00:51:38.880 -->
00:51:47.519So people go on and they look for information naturally about diabetes when they've been diagnosed.
00:51:47.519 -->
00:51:53.760And AI is what they're using nowadays, and AI will give them back answers.
00:51:53.760 -->
00:52:05.360And 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.
00:52:05.360 -->
00:52:17.360And 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.
00:52:17.360 -->
00:52:19.760And that's where the information came from.
00:52:19.760 -->
00:52:30.320So 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.
00:52:30.320 -->
00:52:36.559For us as an organization, it means that if people go to AI, they don't often come to us.
00:52:36.559 -->
00:52:39.360They might just take the information from AI, it may not be accurate.
00:52:39.360 -->
00:52:51.519We'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.
00:52:51.519 -->
00:52:55.840So I think there is a balance within AI with suggests at this moment in time.
00:52:56.480 -->
00:53:07.840Diabetes UK historically has invested heavily in like there's a fantastic content section on your website which is clinically proven and tested with people.
00:53:07.840 -->
00:53:13.039Are you seeing the numbers of people accessing that reducing as they're going through GPT?
00:53:13.519 -->
00:53:19.440Yeah, so we've over 1,500 pages of clinically approved information to be able to support people.
00:53:19.440 -->
00:53:28.079And with AI, we've seen a reduction in the number of people coming through, as have many other organizations and many other charities.
00:53:28.079 -->
00:53:30.800It's probably been around this year, about 25%.
00:53:30.800 -->
00:53:32.639So it's quite significant.
00:53:32.639 -->
00:53:37.119And people go into AI for the information, which isn't, as I say, always accurate.
00:53:37.119 -->
00:53:41.760There's a part to be played for AI, absolutely, but we just need to be really, really careful about that.
00:53:42.079 -->
00:53:50.079How do you feel about all that information being sucked up into the AI systems, whether it's GBT, Claude, or the these other systems?
00:53:50.079 -->
00:53:58.400Having 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?
00:53:58.400 -->
00:54:05.599But 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?
00:54:05.920 -->
00:54:06.960Yeah, absolutely.
00:54:06.960 -->
00:54:20.239So, 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.
00:54:20.239 -->
00:54:25.199So, really, as you say, from an altruistic point of view, that's what we want to do.
00:54:25.199 -->
00:54:28.400And the fact that we've invested in it, that's fine.
00:54:28.400 -->
00:54:30.719That's our job, that's our role to do that.
00:54:30.719 -->
00:54:45.920The 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.
00:54:45.920 -->
00:54:53.199So they're not getting the full benefit from us as a charitable organization and the support that we can offer to them.
00:54:53.199 -->
00:54:58.800Equally, that doesn't allow us to build a relationship with people.
00:54:58.800 -->
00:55:05.840And we know that when we build a relationship with people, we help and support them, they often will want to then support us.
00:55:05.840 -->
00:55:17.119So 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.
00:55:17.119 -->
00:55:34.960So 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.
00:55:34.960 -->
00:55:52.559And 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.
00:55:52.880 -->
00:55:57.440Do you have views on how we keep the kind of the digital side of things more human?
00:55:57.760 -->
00:56:03.679I 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.
00:56:03.679 -->
00:56:05.519It really forced us to go digital.
00:56:05.519 -->
00:56:11.760And what we've witnessed is that people still value connection with other people.
00:56:11.760 -->
00:56:16.719So it's great what you can get out of digital and online.
00:56:16.719 -->
00:56:18.159It's fantastic.
00:56:18.159 -->
00:56:23.679But that human connection, that connection with others, is so valuable for people.
00:56:23.679 -->
00:56:28.159And you can't always get that through a computer or through online learning.
00:56:28.159 -->
00:56:40.719So 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.
00:56:40.719 -->
00:56:48.960So I think the other thing we need to remember is that there are communities that are digitally excluded for various different reasons.
00:56:48.960 -->
00:56:54.719Some because if they're older, they don't necessarily understand the technology, it's not what they've grown up with.
00:56:54.719 -->
00:57:00.559And that will change as the years go on because obviously, as communities grow up, now they're more digitally enabled.
00:57:00.559 -->
00:57:04.559So they they will become the future digital generations.
00:57:04.559 -->
00:57:10.159But there's also things that we've heard around when you look at poverty, people who are data poor.
00:57:10.159 -->
00:57:17.119So yes, they might have a mobile phone, but they don't have sufficient funds to be able to get data on that mobile phone.
00:57:17.119 -->
00:57:19.679So they're excluded again from accessing.
00:57:19.679 -->
00:57:32.559So 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.
00:57:32.559 -->
00:57:37.519Some people will love going in to an online platform, some people will hate it.
00:57:37.519 -->
00:57:46.639Some 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.
00:57:46.639 -->
00:57:53.440Some people will love going into a group of people to be able to talk and feel that they are supportive of that group.
00:57:53.440 -->
00:58:00.880We have to have and maintain, I would suggest, the various different avenues over to meet the different needs of people.
00:58:05.280 -->
00:58:11.360You talked earlier a bit about diagnosis and the importance of that kind of first phase of care after diagnosis.
00:58:11.360 -->
00:58:15.280So the first days and weeks can set the tone for everything that follows.
00:58:15.280 -->
00:58:22.480I'd love to hear about the Diagnosis Connect initiative that I've been reading about and its potential for reimagining that early experience.
00:58:22.480 -->
00:58:26.480Can you tell me a bit more about how that might work and why it's important?
00:58:27.199 -->
00:58:32.639So Keir Starmer announced it in Civil Society earlier in July, I think it was.
00:58:32.639 -->
00:58:34.719It'd been in conversations.
00:58:34.719 -->
00:58:52.079I 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.
00:58:52.079 -->
00:58:56.639And it's a time when they will really get most value from support.
00:58:56.639 -->
00:59:00.719And we recognize that there are different types of support that people need.
00:59:00.719 -->
00:59:08.400So they absolutely need the support of healthcare professionals, be able to help them to understand their condition and adjust their medication, all of that.
00:59:08.400 -->
00:59:12.639But they also need support to learn how to live with diabetes.
00:59:12.639 -->
00:59:25.679And 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.
00:59:25.679 -->
00:59:31.119For various different reasons, change of government and all, it seemed to fall off a little bit.
00:59:31.119 -->
00:59:38.159And 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.
00:59:38.159 -->
00:59:47.360And 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.
00:59:47.360 -->
00:59:54.800And as a result of those conversations, Sir Curstarmer announced that it was an initiative that they were moving forward with.
00:59:54.800 -->
01:00:10.159Primary 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.
01:00:10.159 -->
01:00:21.360So 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.
01:00:21.360 -->
01:00:31.679The person who's diagnosed will receive a text message or a message signposting them to the charity that offers support for their condition.
01:00:31.679 -->
01:00:46.400So 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.
01:00:46.400 -->
01:01:02.880That 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.
01:01:02.880 -->
01:01:13.760Or 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.
01:01:13.760 -->
01:01:17.280So really, really fantastic opportunity.
01:01:17.280 -->
01:01:20.159It's surprising that we haven't had this in the past.
01:01:20.159 -->
01:01:32.159You 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.
01:01:32.159 -->
01:01:35.280And we know the time pressures they're already under as well.
01:01:35.280 -->
01:01:39.360The ideal would be for this to happen automatically.
01:01:39.360 -->
01:01:49.679So 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.
01:01:49.679 -->
01:01:56.480So really is what I would say one of the best initiatives I've seen in all the time I've worked at Diabetes UK.
01:01:56.800 -->
01:01:59.599How would you summarize the potential for impact?
01:02:00.079 -->
01:02:01.119Oh, it's massive.
01:02:01.119 -->
01:02:18.400If 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.
01:02:18.400 -->
01:02:20.239I would have better control.
01:02:20.239 -->
01:02:23.840I would not feel alone, I would not feel isolated.
01:02:23.840 -->
01:02:30.800So I think in the outset, it will help with building confidence for people to be able to manage their diabetes.
01:02:30.800 -->
01:02:52.320It 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.
01:02:52.320 -->
01:02:56.239And hopefully we will support people to be able to avoid them in the future.
01:02:56.639 -->
01:03:00.800It sounds like quite a simple concept, although it's going system-wide.
01:03:00.800 -->
01:03:04.880What did it take to actually get buy-in from government and the NHS?
01:03:05.519 -->
01:03:23.280In 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.
01:03:23.280 -->
01:03:32.320Once 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.
01:03:32.320 -->
01:03:44.639So 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.
01:03:44.639 -->
01:03:49.760And then what happened was they were able to then take that forward and move it forward.
01:03:50.159 -->
01:03:56.079Before we close, I'd like to step back from the specifics a bit and reflect on leadership and motivation.
01:03:56.079 -->
01:04:01.920You've worked across so many parts of the system, education, clinical care, partnerships.
01:04:01.920 -->
01:04:06.400What have you learned that keeps people going and what gives you hope for the future?
01:04:07.280 -->
01:04:08.320That's really interesting.
01:04:08.320 -->
01:04:15.760So what people what keeps people going, keeps people coming into work every day, is their ability to make a difference.
01:04:15.760 -->
01:04:32.400That 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.
01:04:32.400 -->
01:04:35.519They go in there because they're motivated to do so.
01:04:35.519 -->
01:04:48.559My 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.
01:04:48.559 -->
01:04:58.079And 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.
01:04:58.079 -->
01:05:12.079But 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.
01:05:12.079 -->
01:05:13.679That's the ideal.
01:05:13.679 -->
01:05:21.840And 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.
01:05:21.840 -->
01:05:28.639It's no longer a debilitating, horrible condition that people have to live with, and it's in the past.
01:05:29.360 -->
01:05:34.239What qualities or mindsets do you think we need more of in the in the system to make change happen?
01:05:34.639 -->
01:05:35.840Good question.
01:05:35.840 -->
01:06:00.000An 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.
01:06:00.000 -->
01:06:07.039Just because, and sometimes people can get tied back in, but there's not money, there's no money, there's no this.
01:06:07.039 -->
01:06:29.280I 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.
01:06:29.280 -->
01:06:32.079And we simply changed the system.
01:06:32.079 -->
01:06:48.639What 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.
01:06:48.639 -->
01:06:52.480And then the lab did, and then we issued clinic appointments.
01:06:52.480 -->
01:06:57.519So they were no longer coming in the morning, they were coming at a clinic appointment to be seen at the clinical appointment.
01:06:57.519 -->
01:07:05.519They 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.
01:07:05.519 -->
01:07:13.360That didn't cost any additional money, and actually it saved an awful lot of time of a lot of people and respected that.
01:07:13.360 -->
01:07:20.320So 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.
01:07:20.880 -->
01:07:27.360If you could fix one thing tomorrow, a policy, a mindset, a system behavior, what would that be?
01:07:28.639 -->
01:07:39.920The understanding that people have around diabetes and especially type 2 diabetes to try and address the stigma.
01:07:39.920 -->
01:07:52.000Stigma is such a challenge for people who live with type 2 diabetes and type 1 diabetes, both.
01:07:52.000 -->
01:08:04.000And 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.
01:08:04.880 -->
01:08:06.079Thank you, David.
01:08:06.079 -->
01:08:15.039The 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?
01:08:15.039 -->
01:08:17.439And it doesn't have to be health or system related.
01:08:17.439 -->
01:08:18.720I'm just curious.
01:08:20.079 -->
01:08:27.680To have successful change requires all the various different players to be at the table.
01:08:27.680 -->
01:08:30.000Now everyone would agree with that.
01:08:30.000 -->
01:08:38.800But I think it absolutely is needed because you risk missing something out if you don't.
01:08:38.800 -->
01:08:47.600And 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?
01:08:47.600 -->
01:08:55.199So I think making sure that you have everyone around the table when you had that conversation to understand going forward.
01:08:55.520 -->
01:08:58.319Diagnosis Connect being a great example.
01:08:58.560 -->
01:08:59.199Yes.
01:09:00.640 -->
01:09:01.199Brilliant.
01:09:01.199 -->
01:09:04.479David, thank you so much for taking the time to speak to us today.
01:09:04.479 -->
01:09:05.760I've really enjoyed the conversation.
01:09:06.079 -->
01:09:06.800Well, thank you.
01:09:06.800 -->
01:09:08.399That's been really, really good.
01:09:27.600 -->
01:09:33.279Find out more about how we can help you deliver user centered change at healthier.services.
