When you hear the words Type 1 Diabetes (T1D), what comes to mind? Your first thoughts will be of insulin injections, sugar monitoring, and the delicate balancing act between food and medication.
For those living with T1D, diet is inseparable from their condition, but there is a lesser-known side to this: the dangerous intersection of T1D and disordered eating, known as ‘T1DE’ for short. Separately, T1D and eating disorders are well-documented conditions. Together, they form a complex, dangerous condition which can in extreme cases, become a life sentence.
Put simply, T1DE is when a person with Type 1 Diabetes reduces or stops taking their insulin to lose weight, or when they instead restrict their diet or over-exercise which has the effect of limiting the amount of insulin they need. This insulin restriction can be coupled with well-known symptoms of disordered eating such as obsession with nutritional information, binging and purging, and using laxatives to lose weight.
Although as a society we have been conditioned to view weight loss positively, in the case of T1DE the medical consequences can be extreme, including bone wastage, blindness, the need for amputations and, eventually, death.
Last week, I was proud to lead a debate on T1DE services in the House of Commons. This was an important opportunity both to raise awareness of the little-known condition and to hear a range of fantastic contributions from colleagues of many political persuasions. The debate shone a light on just how important it is for us accelerate work to tackle T1DE head on.
As I said in the chamber, many of us have the luxury of going out for dinner and choosing a meal based on what we like the sound of, often without a second thought for calories or sugar content, certainly in my case! For those with T1D, however, the demands of their condition are relentless, not allowing for even a single ‘night off’.
Given that daily challenge, it is not difficult to see how this focus on diet can warp into avoidant, restrictive or even binging behaviours. But because, at least to begin with, these behaviours can be indistinguishable from healthy diabetes management, T1DE is a particularly insidious condition that can go unnoticed, even by the person affected.
Whilst T1DE has been referred to as “niche” or “rare”, research suggests that over a quarter of people with T1D, including 40% of girls and women, experience some form of disordered eating. That is 100,000 people, a number simply too big to ignore.
Thankfully, in many parts of the country people with T1DE are no longer falling down the gaps between diabetes care and eating disorder clinics. Two trailblazing pilots of joined-up T1DE services, knitting specialist teams together, were launched back in 2019. They were followed by a second wave of five pilots two years ago.
This was a huge step forward, but sadly we took a step back when the initial pilot sites in London and Bournemouth closed after their funding ran out in April 2024 and was not renewed by either the previous government or the local NHS commissioners. The five remaining pilots faced uncertainty until earlier this year when their funding was extended by 12 months to April 2o26. The harsh reality is that the pilot sites were only ever intended to cover some of the country, meaning most of England, including my constituency of Cannock Chase, is yet to see bespoke services.
Against this backdrop of tentative progress, in January of last year the findings of an 18-month long parliamentary inquiry into T1DE were revealed. The inquiry gathered evidence from people with lived experience of T1DE, medics, researchers, and voluntary sector leaders. Its key recommendations included:
*permanent funding so pilot sites can become ‘centres of excellence’.
*internationally agreed diagnosis criteria for T1DE,
*training for healthcare staff on how to spot and manage T1DE,
*better data sharing to enable joined-up care,
*a peer support offer to reach every corner of the country.
Having worked on preparations for the T1DE pilot service in Coventry and Warwickshire service myself, I know that increasing awareness of the condition will be vital. So will making sure families and carers have the tools and support they need to play their part in early intervention and treatment. Diabetes UK is currently funding research into the prevention of T1DE in children which will help parents and carers recognise signs of unhealthy eating behaviours. Everywhere you look there is great work for us to build on.
A point made loud and clear in last week’s debate was the need for long-term funding and to build existing best practice out into a nationwide offer. I was encouraged to hear the Minister confirm that NHS England plans to seek further national investment in T1DE treatment and care in the multi-year spending review. Findings from the pilot sites will also be shared with commissioners across England to make the case for them to invest in T1DE services, with a final evaluation report due in September.
It is clear that we have come a long way in giving people with T1DE the recognition and joined-up care that they need and deserve. However, if we are going keep that progress up, we need more – more awareness, more collaboration, more advocates and more funding certainty. That mammoth effort will need those of us in the Government, Parliament, the NHS, charities and beyond in lockstep. Let’s get to work!
