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Home > Knowledge & support > Resource hub > T1DE can’t wait: The progress we’ve made and the risks ahead
At Breakthrough T1D, we feel incredibly strongly about the need for better recognition and support for people experiencing Type 1 Disordered Eating or T1DE. It’s a problem that affects far too many people with type 1 diabetes (T1D), and yet the services designed to help them are still limited, under‑resourced, and at risk. We see the impact this gap has on people and families every day, and it’s why we’ve been pushing so hard to get T1DE the attention it deserves.
The past year has finally brought some movement. T1DE is being talked about more. In Parliament, in national investigation and across clinical teams. However, with specialist services facing an uncertain future, this is also a moment where we need to keep the pressure on. Progress is happening, but it’s fragile, and we’re determined not to lose the momentum.
Type 1 and disordered eating, known as T1DE, is an eating disorder in a person with T1D. This often manifests as people taking too little insulin in order to control their body weight (insulin restriction) but can also be another form of disordered eating, like bulimia or anorexia, alongside their T1D.
Evidence suggests that up to 40% of girls and women and up to 15% of boys and men with T1D will experience an eating disorder, affecting as many as 144,000 of the roughly 400,000 people in the UK with T1D.
Unfortunately, T1DE can be difficult to recognise because there is no official consensus on how to diagnose it. It can be even more difficult to treat due to the highly complicated nature of the condition, requiring a multi-disciplinary team with experience in both eating disorders and diabetes.
The result? Poor outcomes, missed diagnoses, and for some families, tragic loss.
At Breakthrough T1D, we were deeply concerned about the extent of T1DE, especially some high profile cases which tragically resulted in premature deaths. We conducted a parliamentary inquiry into T1DE, led by then-MPs Sir George Howarth and the Rt. Hon Theresa May which was published in January 2024.
The report highlighted significant gaps in the health system needed to diagnose and treat the condition. It made recommendations centred on improving recognition, diagnosis criteria, guidelines, treatment pathways, support, training, prevention initiatives, and research to effectively address the challenges associated with T1DE.
There has been some positive news in this space. In 2019, NHS England funded two pilot sites which treated T1DE.
Evaluation of these initial sites revealed:
Following these results, additional funding was made available to create five more T1DE sites across the UK.
Once funding from NHSE finished, it was expected that funding would instead come from local health boards. Unfortunately, this central funding runs out in March 2026 and local health boards have so far not committed to maintain funding, leading to an uncertain future for these pilot sites and perilous situation for those living with T1DE who may suddenly lack opportunities to receive treatment.
We’ve been expecting an evaluation of the second wave of pilot sites since December of 2025 which would go a long way in demonstrating the value of these services to local health boards, but at the time of writing this evaluation has yet to be published.
In the last six months, the Health Services Safety Investigations Body (HSSIB) has been running an investigation into the safe self-administration in vulnerable patient groups in the community. Although it doesn’t exclusively focus on T1DE, it does feature heavily in the report.
We are very grateful that we had the chance to feed into the investigation to offer insights we gained from our parliamentary inquiry. We’re glad to see that they’ve arrived at recommendations in line with the ones made in our earlier parliamentary inquiry.
Separately, we’ve been continuing to raise awareness about the condition and the recommendations we made in our report through our parliamentary activity. In March of last year, a member of the All-Party Parliamentary Group for Diabetes secured a debate on T1DE which we supported. During this debate, the Minister for Primary Care and Public Health agreed to meet with the APPG to discuss T1DE.
We’ve also prompted a series of Written Questions in Parliament on the topic, to try and ensure that pilot sites at the very least receive ring-fenced funding with a long-term goal of expanding the availability of these services.
We’re hoping that with renewed interest following the HSSIB report and our continued efforts, we can not only guarantee the future of T1DE services but expand them so that everyone with T1DE can get the diagnosis and treatment they so desperately need.
If you or someone you know is living with type 1 diabetes and experiencing disordered eating, we have information, shared experiences and links to further support.
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Our research is improving the lives of people with type 1 and making strides towards a cure. We’ll keep pushing until we make type 1 diabetes a thing of the past.
