Type 1 diabetes and disordered eating (T1DE) involves restricting insulin to control weight and can lead to premature death, sight loss and organ damage, and this insulin restriction triples the mortality rate among patients with diabetes.
NHS England is currently running five pilot schemes to treat the disorder, but funding for four of them is due to run out in April – leaving vulnerable, high-risk patients with nowhere to go.
T1DE is extremely difficult to treat due to the complex relationships between insulin restriction, weight and eating disorder behaviours. Because of this, treatment must be delivered by a team with expertise in both eating disorders and diabetes.
Two pilot schemes to treat T1DE were commissioned in 2019, followed by a further five in 2022. Evaluations of the earlier schemes showed improved health outcomes for patients, halved the cost of inpatient admissions and reduced A&E costs by a third.
In 2024, a Parliamentary Inquiry was led by former prime minister Theresa May and Sir George Howarth, supported by Breakthrough T1D. It strongly recommended continued funding for the sites. One of the early schemes has already closed due to lack of funding, and now four of the schemes commissioned in 2022 may face the same fate.
Lesley and Neal Davison’s daughter Megan, who had T1DE, died by suicide in 2017, expressing that she felt pushed to end her own life due to the lack of appropriate treatment available at the time. Since then, they’ve been campaigning for better treatment for T1DE patients to prevent future deaths.
Lesley said: “We know first-hand how important it is for people with T1DE to be able to receive the right treatment. When our daughter died, we were heartbroken. To learn she’d been so unwell and that nobody had been able to help her was devastating. Whilst nothing can ever bring Megan back, we’re determined to raise awareness of this awful condition and prevent future deaths. The best way to do that is to make sure people have access to services like the pilot schemes.”
Beat’s CEO, Vanessa Longley, said: “Beat hear every day from people who can't get the right support with their eating disorder, and those with T1DE can find it even more challenging to get the right help. For them, these vital pilots offered transformative care, and with the right care people get better quicker and stay well longer, which is why it is so disappointing that the pilots are at risk of closure. Everyone deserves to get the right treatment, at the right time - we need to make this true for every person with T1DE, and every person with an eating disorder."
Dr Anthony Winston, Medical Lead for Eating Disorders at Coventry and Warwickshire Partnership Trust, said: “NHS England took the bold step of establishing a network of pilot services to develop effective treatment for T1DE. These services have been shown to be effective in treating this complex and life-threatening condition. Regrettably, local commissioners have not been willing to fund these services on an ongoing basis and they therefore face the prospect of closure. People with T1DE will be unable to access the treatment they need and the NHS will lose the world-leading expertise that the pilot services have developed.”
Hilary Nathan, Director of Policy at Breakthrough T1D, said: “These pilots have shown what responsible, modern healthcare should look like. With the right expertise and early intervention, we can prevent crisis rather than simply react to it. Closing them would send a troubling message that even proven improvements can be withdrawn, despite clear evidence they are making a difference. People experiencing T1DE deserve consistency and long-term commitment. If we are serious about reducing preventable harm, this is the moment to build on what works - not take it away.”
Helen Kirrane, Head of Policy, Campaigns and Mobilisation at Diabetes UK, said: “People with type 1 diabetes with disordered eating need specialist NHS support, as standard mental health and eating disorder services are not equipped to manage its complexity. Pilot sites have shown that teams with expertise in both diabetes and eating disorders are essential, yet these services face uncertain funding and we urge local commissioners to ensure they continue to operate. In the longer term, the Government must develop a strategy for improving collaboration between mental health, eating disorder and diabetes services to better meet the needs of people with type 1 diabetes and disordered eating.”
Hope Virgo, Secretariat for the All-Party Parliamentary Group on Eating Disorders and founder of DumpTheScales, said: “Every day, people with T1DE are being failed by a system that does not provide the right support. They are forced to navigate services that are fragmented, under-resourced and too often unwilling to take responsibility. The result is delayed care, worsening health, avoidable hospital admissions and, tragically, preventable deaths. These pilot programmes proved that when people receive the right treatment at the right time, outcomes transform and removing these pilots could have potentially fatal consequences.”
Key statistics and information on T1DE:
More information on pilot sites: