Vital NHS T1DE treatment pilot schemes set to end in April

A series of pilot schemes commissioned by NHS England to treat a life-threatening eating disorder are at risk of closure.

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 seven 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 Davison 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.”

Hillary Nathan, Director of Policy at Breakthrough T1D, added:

“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.”

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.”

Beat's CEO, Vanessa Longley, stated:

“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."

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Key statistics and information on T1DE:

• Prevalence studies are limited, but it appears to affect as many as 144,000 of the estimated 400,000 people in the UK with type 1 diabetes.

• It is estimated that around 5% of people with type 1 diabetes have severe T1DE.

  
  

• It involves disordered eating behaviours such as restricting insulin to control weight or body image.

  
  

• Complications can include diabetic ketoacidosis, chronic hyperglycaemia, malnutrition, neuropathy, sight loss, increased risk of mental health disorders and other eating disorders.

  
  

• Studies have highlighted that those who restricted their insulin had a mortality rate over three times higher than those who did not.

  
  

• Age of death amongst those who restricted their insulin intake was noticeably lower, an average of 45 years opposed to 58 years for those not restricting their insulin intake.

More information on pilot sites:

• In 2019, NHS England established two pilot sites to treat people with T1DE. A further five sites were commissioned in 2022.

  
  

• One of the first wave pilot sites has already been forced to close, while four of the second wave sites risk closure in April. One second wave site has secured funding for an additional 12 months.

  
  

• NHS England’s own evaluation and outcome data published in The Lancet Diabetes & Endocrinology have shown that this kind of treatment for T1DE leads to clinically significant reductions in both the HbA1c blood test (which measures how effectively diabetes is being managed and the risk of complications) and the number and length of admissions for life-threatening diabetic ketoacidosis.

  
  

• A health economic evaluation of the first two pilots, commissioned by NHSE, suggested that mean expenditure on inpatient admissions fell by more than half and A&E costs fell by a third as a result of the pilot intervention.

  
  

• NHSE are currently in the process of evaluating the efficacy of the second wave pilots.

Thank you to our fellow Taskforce member Beat for their work on this press release