Josh Newbury MP
Member of Parliament for Cannock ChaseA deadly combination of type 1 diabetes and disordered eating, known as T1DE, poses significant risks to those affected. With complications ranging from severe health deterioration to death, the UK healthcare system must prioritise comprehensive and specialised care. Recent parliamentary debates and pilot programmes have highlighted the urgent need for sustainable, long-term solutions to support those living with T1DE.
The Overlooked Crisis of T1DE
On the surface, diabetes and disordered eating may seem unrelated, but they are in constant conflict. Diabetes requires careful management of insulin to regulate blood sugar, while disordered eating often involves behaviours which undermine that. However, a combination of the two, known as โT1DEโ for short, is a very real risk for people with type 1 diabetes.
When someone with diabetes intentionally restricts their insulin intake to control their weight, they not only put their blood sugar levels at dangerous levels, but also risk extreme complications such as bone wastage and blindless, and eventually death. The interaction between these two conditions creates a vicious cycle – each exacerbating the other, making recovery even more difficult.
A Call for Policy Action
Before being elected to represent my home in Parliament, I worked at the Coventry and Warwickshire Partnership NHS Trust (CWPT). It was there that I saw the incredible work taking place across our NHS to tackle the most complex and challenging health conditions, particularly the transformative work that CWPT did as one of the second wave of pilot sites for bespoke T1DE services.
Last week, I had the privilege of introducing the first ever debate on T1DE in the House of Commons. I was proud to highlight this little-known condition, particularly given that over 100,000 people with type 1 diabetes will experience disordered eating. The debate allowed MPs from across the political spectrum to explore the complexities of the disorder, from the psychological to the physical, and the many thoughtful contributions demonstrated the best of cross-party working.
The Gaps in Healthcare Support
For decades, people living with T1DE have been navigating a healthcare system that fails to fully address the complex, interconnected nature of these conflicting conditions. Because type 1 diabetes necessitates a strict attention to diet, unhealthily restrictive and avoidant approaches to food that characterise T1DE can sometimes be indistinguishable from healthy diabetes management. Shame and stigma, both internal and external, is a powerful barrier to people with T1DE seeking help with this extremely complex and dangerous condition. Research shows that people with T1D are more likely to develop an eating disorder than those without diabetes โ this is especially true for women and girls.
The physical and psychological toll of these two diseases can be overwhelming, yet existing services often treat them in isolation. 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 are understandably not well versed in the complexities of managing diabetes, whilst diabetes care teams may not be equipped to deal with the psychological aspects of eating disorders.
Progress and the Fight for Sustainable Services
To the credit of the last government, they launched seven groundbreaking T1DE pilot sites across England which finally recognised that people living with both conditions need support that is not only specialised but also joined up. These services combine expert diabetes management with tailored eating disorder treatment into one cohesive service. The outcome? Faster recovery, reduced hospital admissions, and, most importantly, healthier, fuller lives for patients. Savings are also all but guaranteed given that we know complications stemming from mental ill health in people with long-term physical illnesses increases the cost of care by an average of 45%.
Reflecting on my experience, itโs clear how crucial it is for services to be more than just functional. They must see the individual and treat the whole person, not just certain symptoms. Although I had moved on from CWPT at the point its pilot project accepted its first patients, working on the preparations was a highlight of my time working in our NHS. The dedicated team based at the Aspen Centre in Warwick werenโt just launching a service; they were shaping something that, we hope, will fundamentally change the way we understand and treat T1DE.
Securing the Future of T1DE Care
But now is no time to rest on our laurels. A lack of extended funding from the previous government or local NHS commissioners led to the first two pioneering pilot sites in London and Bournemouth shutting their doors in April of last year. Alongside colleagues on the APPG for Diabetes, I have heard concerning reports about the impact that this had on patients who saw their support withdrawn.
Despite being faced with an uncertain funding picture, the new government has extended the life of the five remaining pilot sites for 12 months to April 2026. A final evaluation report is due in September and will inform the long-term future of T1DE services in England. A message given loud and clear in last weekโs debate to the Minister Ashley Dalton was the need to make sure the world-leading work that we are seeing does not end with these pilot projects.
It was clear that the Minister understood this completely when she committed to ensuring that data and best practice from the sites will be shared across the healthcare system, and that the Department for Health and Social Care will seek additional investment from the spending review to build out a nationwide offer for T1DE care. Even if this investment is not secured, the Government will make the case for bespoke services to NHS commissioners up and down the country. As an MP in Staffordshire, an area which has not hosted a pilot site, this is particularly welcome.
The need is too great, and the outcomes too valuable, to let the progress we have made fall by the wayside. Six years on from the first services opening their doors, there is still much work to be done in raising awareness of T1DE within our NHS and internationally. Conversations like the one we had last week are crucial in breaking stigma and misunderstanding surrounding T1DE and building on the strong foundations which have been laid by dedicated professionals and people with lived experience. Alongside passionate MPs from across the House, I am determined to make sure my debate will not be the last we hear of T1DE in Westminster.
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