Type 1 Diabetes and Disordered Eating Services

Jim Shannon Excerpts

Wednesday 5th March 2025 Commons Chamber

[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.

--- Later in debate ---

[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.