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Josh Newbury (Cannock Chase) (Lab)
It is a privilege to have secured a debate on a chronic but often misunderstood condition that affects many people across our country: the correlation between type 1 diabetes and disordered eating, known as “T1DE” for short. Separately, those two conditions are well-known and well documented, but together they exacerbate one another and can, in extreme cases, become a life sentence.
On an individual level, type 1 diabetes is a chronic autoimmune condition characterised by the pancreas being unable to produce insulin, meaning that those with the condition are required to carefully monitor their blood glucose levels and administer insulin. As we know, that delicate balance demands constant attention. Many of us have the luxury of going out for dinner and choosing a meal based on what we like the sound of—shamefully, in my case, often with too little thought to the sugar content, calories or how the body will digest it. For those with type 1 diabetes, however, that blissful ignorance simply is not an option. For them, life revolves around counting carbohydrates, monitoring blood sugar levels and injecting insulin. It is relentless. To put that into numbers, a child diagnosed with type 1 diabetes at the age of five faces up to 19,000 injections and 50,000 finger-prick blood tests by the time they are 18. Every moment of every day is a balancing act between food, activity and insulin.
Jim Shannon (Strangford) (DUP)
I commend the hon. Gentleman for securing the debate. I spoke to him outside the Chamber and he knows exactly what I am going to say. I have been a type 2 diabetic for almost 20 years, and I understand very well the fact that monitoring food intake is part and parcel of daily life. For those who suffer from an eating disorder, the constant food noise needs to be addressed by a professional, but diabetic clinics do not have the resources to deal with that. Does he agree that we need mental health support links for diabetics throughout the United Kingdom?
Josh Newbury
It is a pleasure to take my first intervention from the hon. Gentleman. I pay tribute to him for his campaigning on this issue and the personal experience that he brings to the House. I will come later in my speech to my experience of mental health services. I absolutely agree that we need to ensure that people with type 1 and type 2 diabetes have all the support they need for their mental health and managing their condition.
For some, type 1 diabetes morphs into a the deeper challenge of disordered eating—it is not difficult to see how that can happen. Given the strict attention to diet and nutritional information that type 1 diabetes necessitates, unhealthily restrictive and avoidant approaches to food can sometimes, at least to begin with, be indistinguishable from healthy diabetes management. As we know, in some cases, one side effect of insulin-based treatment can be weight gain. That leads some people with type 1 diabetes to realise that by restricting their insulin intake, or even stopping it altogether, they can essentially eat what they like and lose weight. However, the medical consequences of that are stark, including kidney problems, bone wastage, amputations, blindness and even death.
One of the most insidious aspects of T1DE is how difficult it can be to identify until its devastating consequences for both physical and mental health begin to manifest themselves. People suffering with T1DE often say that the isolation that comes with trying to navigate both a chronic illness and disordered eating is unimaginable for anyone who has not experienced it.
Sarah Bool (South Northamptonshire) (Con)
I thank the hon. Gentleman for securing this debate. As someone with type 1 diabetes, having been diagnosed only four years ago I completely understand the feeling of isolation just from having diabetes, let alone having to deal with disordered eating as well. Does he agree that we need to destigmatise both conditions, so that we can ensure the right support for patients?
Josh Newbury
I completely agree with the hon. Lady, and I thank her for the lived experience that she brings to this House, and for how candid she has been in sharing her experiences. I could not agree with her more.
Many people are falling through the cracks of a system that often fails to recognise the unique needs of people who live with both type 1 diabetes and disordered eating. While disordered eating in those with type 1 diabetes is sometimes referred to as “niche” or “rare”, it is becoming increasingly clear that it is simply under-recognised, and it is often missed. Evidence suggests that up to 40% of women and girls, and up to 15% of men and boys with type 1 diabetes experience some form of disordered eating. That is a quarter of the 400,000 people in the UK with type 1 diabetes.
Alex McIntyre (Gloucester) (Lab)
My hon. Friend makes the important point that this issue affects so many people. I have direct experience with a family member who had type 1 diabetes and what, back then, was referred to as diabulimia. They could not get support because the medical profession did not accept that it was a condition. Does my hon. Friend agree that part of tackling this issue is recognising its impact on families across the country, as that is the first step to ensuring that people get the support they need?
Josh Newbury
I agree with my hon. Friend. We need far better awareness of this condition, and better support for people affected and their families—I will come on to that a little later in my remarks.
As my hon. Friend said, a key issue we still face is the absence of internationally recognised criteria for T1DE, which hampers accurate diagnosis and classification, as well as collaboration and research. Within our NHS, pockets of fantastic practice have existed for a long time, but overall the current system often does not take account of the unique challenges faced by people with T1DE. Eating disorder specialists might lack the necessary understanding of diabetes management, while diabetes care teams may not be fully equipped to deal with the psychological aspects of eating disorders. The gap in knowledge and siloing of services means that people with T1DE sometimes come up against exclusion criteria and will end up disengaging from services at a critical point in their condition.
The need for joined-up, bespoke services is where the five NHS England T1DE pilot sites come in. Those trailblazing projects are combining diabetes and eating disorder support into one service, helping people to recover faster from T1DE and reducing repeated hospital admissions. That is where my interest in T1DE comes in, because in a past life I worked in the communications team at the Coventry and Warwickshire partnership NHS trust. When it was selected as one of the second wave of pilot sites, I had the privilege of working on preparations for the launch of the new service. Although I sadly moved on before the service was launched, that was a highlight of my years working for our NHS. What I learned about T1DE in those few months has stayed with me, as has the expertise and dedication of Dr Tony Winston and his team at the Aspen centre in Warwick, which is to be commended.
I pay tribute to CWPT and all the pilot sites for the pioneering work they have done to develop these services from the ground up, co-designing them with patients who at last are being heard and treated. Diabetes UK told me that it supported NHS England in the development of those pilots, and it is calling for long-term funding to ensure that best practice is shared and, most importantly, that support is offered by those services on a sustainable footing.
Tom Collins (Worcester) (Lab)
I congratulate my hon. Friend on securing this important debate. Type 1 diabetes is incredibly demanding to live with. It is a game of numbers, and as such it can be greatly helped by technology, which is developing rapidly. I wish to put on the record how important it is that the Government ensure universal access to such transformative technology for all who are insulin dependent with diabetes. Even if someone’s iPhone can be their pancreas, type 1 diabetes is unique in its constant psychological demands. It invades people’s lives socially as well as practically, with the result that type 1 diabetes combined with disordered eating is a perfect storm. Does my hon. Friend agree that it is important that we provide not just practical but emotional support that is integrated not just around an individual but also the family, to provide for the severe depths of need for this complex condition?
Josh Newbury
I completely agree with my hon. Friend’s comments on the need for technological advancement. I will come on to support for the family a little later in my comments, but it is critical to have a support network around people with T1DE.
To the credit of the last Government, they recognised the need for T1DE-specific services, but they allowed the initial two pilots, in Bournemouth and London, to close in April last year. Those of us who are members of the all-party parliamentary group on diabetes have heard stories about patients who have suffered as a result of that cliff edge.
Having inherited a highly uncertain and unfunded position, I very much welcome the Government’s recent announcement of a 12-month extension to the ongoing pilots. That will ensure sufficient patient numbers and, more importantly, safeguard vital services where they already exist. I encourage the Department of Health and Social Care to seek additional investment through the spending review. Now that services have been up and running for over two years, our focus should turn to building up to a national offer, so that people with T1DE in parts of the country like Staffordshire can benefit for the first time.
Another vital effort will be raising awareness of T1DE, particularly within general practice and eating disorder services, to ensure that people with both conditions receive tailored care. This is a call not solely for increased training for healthcare professionals, but for greater recognition of the issue within the system as a whole. The King’s Fund and Centre for Mental Health report, “Long-term conditions and mental health: the cost of co-morbidities”, shows that complications stemming from mental health illnesses in people with long-term physical illnesses increases the cost of care by an average of 45%.
In June 2022, a parliamentary inquiry into T1DE was launched. It was very ably co-chaired by Theresa May and Sir George Howarth, both then Members of this House. I acknowledge the work of the hon. Member for Harrogate and Knaresborough (Tom Gordon), who I have known for many years, who co-wrote the inquiry’s report during his time working for the Juvenile Diabetes Research Foundation, now Breakthrough T1D. The inquiry gathered evidence from experts, those with lived experience, researchers and voluntary sector leaders.
The report was launched in January last year and the key findings included the need for international diagnosis criteria, updated National Institute for Health and Care Excellence guidelines, the continuation of funding so that pilot sites can become centres of excellence, better data sharing, and a T1DE peer support offer to reach every corner of the country. I urge the Government to look at increasing awareness and training, particularly to give families and carers the tools and support they need to be able to play their part in early intervention and treatment pathways, as hon. Friends have mentioned.
Diabetes UK is currently funding a research project into the prevention of T1DE in children. It will test out an intervention designed to help parents and carers recognise signs of unhealthy eating behaviours. There is a lot of great work going on for us to build on.
To conclude, I thank those running the NHS pilot projects for all their work, Breakthrough T1D and Diabetes UK for the briefings they have given me, and all the Members who have contributed to the debate. We must do everything we can to support people with type 1 diabetes and disordered eating. The issue is not small or rare, and it deserves our attention in this place. By raising awareness, integrating services and providing support for families, we can help people overcome T1DE and lead healthier, happier lives.
The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing the debate and all hon. Members who have contributed. The hon. Member for Strangford (Jim Shannon), who appears to be quickly making an exit but remains in his place, spoke about mental health. The hon. Member for South Northamptonshire (Sarah Bool) spoke about destigmatisation for disordered eating and for type 1 diabetes. By sharing her diagnosis in this place, she is making a huge contribution towards destigmatisation, and I thank her for that. My hon. Friend the Member for Gloucester (Alex McIntyre) shared his family’s story, which is heartbreaking and shows the impact that these issues have on people. My hon. Friend the Member for Worcester (Tom Collins) talked about technological advancement and support.
As my hon. Friend the Member for Cannock Chase outlined in his remarks, type 1 diabetes and disordered eating—T1DE—is not a widely known condition, yet it potentially affects up to a third of people with type 1 diabetes. People with T1DE find themselves trapped in a battle between needing to control their diabetes with insulin and trying to control their weight in an unhealthy way. It is a vicious cycle. People with T1DE experience increased ill health and, sadly, an increased chance of early death. Studies have shown that people with T1DE who restrict insulin have a mortality rate more than three times higher than those who do not.
We should pay tribute to the diabetes charities that are doing so much for people living with diabetes across the UK and tackling this problem head on, such as Beat, which has dedicated helplines for people struggling with this condition; Breakthrough T1D, which funds international research to cure, treat and prevent type 1 diabetes and its complications; and Diabetes UK, which does a fantastic job of articulating the community’s needs to Government.
Tom Gordon (Harrogate and Knaresborough) (LD)
I congratulate my friend, the hon. Member for Cannock Chase (Josh Newbury), on securing this debate. As was mentioned, I used to work for the type 1 diabetes charity JDRF, as it was then—it is now Breakthrough T1D. We used to regularly have meetings with Ministers in the Department of Health and Social Care. One of the key things that I and, I am sure, Members across the House would like to see is the new Government taking up the recommendations of the report by Theresa May and Sir George Howarth. Will the Minister agree to meet the APPG for diabetes to talk about how those recommendations can be implemented?
Ashley Dalton
I am more than happy to meet the APPG to discuss those matters.
I was really moved to read Lynsey’s story on the Diabetes UK website. One thing that really stood out to me was her experience of turning 18 and moving to an adult clinic. She said:
“I became a number in a system, rather than a patient. Every time I went, I saw a different team, and would have to explain my entire medical history. It felt like it wasn’t worth my time, and I certainly wasn’t going to have a conversation about what was going on with people I didn’t know.”
After just a few appointments, Lynsey stopped going. T1DE cuts across diabetes and mental healthcare, and Lynsey’s interactions with the NHS show that we must never treat patients like interchangeable statistics, bouncing around a cold system that does not seem to care for them. Instead, each patient should benefit from a unique, joined-up approach.
To its credit, NHS England has recognised that there is an unmet need for better treatment of T1DE. As my hon. Friend the Member for Cannock Chase has recognised, it has begun piloting type 1 diabetes and disordered eating services, two of which came online in 2019. The aim of those pilots was to develop the evidence base around how best to manage T1DE by testing an integrated pathway, which means that patients such as Lynsey would not be obliged to recount their medical history on every visit. In the past five years, NHS England has expanded on the original pilots, with funding extended for five T1DE pilot sites until March 2026 to ensure that there are sufficient patient numbers for us to get a full picture of what is happening on the ground. I thank my hon. Friend for his contribution to those pilots.
While those pilots are gathering evidence, NHS England is looking carefully at the findings, with a view to developing a future national strategy. Each of the five new pilot areas is submitting quarterly data to the evaluation, and it intends to publish its analysis of the data by September.
Jim Shannon
I thank the Minister for her comprehensive and helpful response. I first came to this House in 2010, and in 2015 a diabetes plan for the whole of the United Kingdom came out of Westminster for all the regions together, but that came to an end. I had always asked and hoped for that plan to come together again. Will she consider having a diabetes plan for all of the United Kingdom of Great Britain and Northern Ireland working together, because I understand that in Northern Ireland we have the highest number of type 1 diabetics anywhere in the United Kingdom?
Ashley Dalton
As I am sure the hon. Member knows, health is obviously a devolved matter. However, I am more than happy to look at the issues he has raised and come back to him.
The data from the pilot areas will also be shared with all the integrated care boards, so that we can build up the case for more investment in T1DE from ICB budgets while looking at ways in which NHS England can support ICBs in commissioning their services.
While those pilot sites are doing critical work, the NHS is supporting people with diabetes to live well. Central to that is making sure that patients have access to annual reviews that cover eight processes recommended by the National Institute for Health and Care Excellence. We know that people who attend annual diabetes reviews have much better outcomes for emergency hospital admissions, amputations, retinopathy and mortality. That is why it is right that the NHS is investing £14.5 million over the next two years, supporting up to 140,000 people between the ages of 18 and 39 to receive additional tailored health checks by healthcare staff. That support will include vital support to break down any stigma associated with diabetes while helping those people to manage their condition, from blood sugar level control and weight management to minimising the risk of heart disease.
As has been touched on, technology plays a critical role in helping people with diabetes to live healthier lives, and there is great potential to do the same for people with T1DE. NICE has made positive recommendations on offering real-time continuous glucose monitoring and hybrid closed loop technology to adults and children with type 1 and type 2 diabetes, meaning that those treatments are now offered on the NHS. Over two thirds of people with type 1 diabetes currently use glucose monitoring to help manage their condition, and following NICE’s recommendations on hybrid closed loop systems, NHS England has developed a five-year national strategy that began in April last year. I know that five years will seem like a long time to many of those young people struggling with this condition here and now, but the NHS does need an implementation period to ensure we have all the right people with the right skills within specialist adult services. We cannot compromise an inch on safety, and NHS trusts should only ever provide hybrid closed loop if specialist trained clinical staff, experienced in using insulin pumps and continuous glucose monitors, are in place.
Tom Collins
I can speak from personal experience about the power of hybrid closed loop systems and the safety they present from day one, compared with the conventional treatment using injections. I encourage the Minister to explore every way possible—using collective peer forums or any other vehicles that can be imagined—to accelerate the deployment of hybrid closed loop technology as fast as we possibly can.
Ashley Dalton
I thank my hon. Friend for that intervention, and for sharing his lived experience. I am more than happy to consider his suggestions and discuss them further.
Finally, I will touch on the encouraging work of the early surveillance for autoimmune diabetes—ELSA—programme. Type 1 diabetes is not preventable, but the sooner we reach people, the sooner we can care for them. ELSA is a children’s screening programme that can detect type 1 diabetes through a simple fingerstick blood test by looking for four antibodies associated with a higher risk of developing diabetes. ELSA launched in November 2022, and over 20,000 children have already taken part. The study has made a huge effort to screen all of those children by February, and we are still waiting to hear whether that ambitious target has been reached. I would be pleased to keep my hon. Friend the Member for Cannock Chase and the House updated on that programme.
It is clear that T1DE is a serious and often overlooked condition that requires a more integrated and compassionate approach to care. The work being done through NHS pilot programmes, investment in diabetes management, and advances in technology all represent meaningful progress, but there is still much more to do. It is vital that we continue to build on the evidence gathered through these initiatives to ensure that people with T1DE receive the tailored, consistent and supportive care they deserve. No patient should feel like a number in the system, or be forced to navigate a fragmented approach to their health. By working together through Government, the NHS and charities, we can ensure that people with T1DE receive the right support at the right time. I look forward to working with my hon. Friend to get this done.
Question put and agreed to.