People living with Type 1 Disordered Eating Failed by Systemic Treatment Flaws : Parliamentary Inquiry Calls for Urgent Changes to Prevent, Treat and Save Lives

People living with Type 1 Disordered Eating Failed by Systemic Treatment Flaws : Parliamentary Inquiry Calls for Urgent Changes to Prevent, Treat and Save Lives

23 Jan 2024

People living with Type 1 Disordered Eating Failed by Systemic Treatment Flaws : Parliamentary Inquiry Calls for Urgent Changes to Prevent, Treat and Save Lives

People living with Type 1 Disordered Eating Failed by Systemic Treatment Flaws:
 Parliamentary Inquiry Calls for Urgent Changes to Prevent, Treat and Save Lives

A Parliamentary Inquiry chaired by Rt. Hon Theresa May MP and Sir George Howarth MP, today highlights the risks of type 1 diabetes-related eating disorders (T1DE), which can include forms of bulimia, anorexia or a person restricting their insulin to lose weight.

Although T1DE can have life-threatening consequences for both physical and mental health, including unstable blood sugar levels, malnutrition, and an increased risk of developing other mental health disorders, such as depression and anxiety, it is not widely recognised or understood.


The Parliamentary Inquiry report pinpoints the causes of T1DE and throws light on the systematic flaws and current barriers to effective and safe treatment. It sets out a framework of essential changes to improve the health of everyone living with T1DE, save lives and reduce long-term costs to the NHS.

Some form of disordered eating is reported in up to 40% of girls and women and up to 15% of boys and men living with type 1 diabetes, yet awareness and support for this condition remains limited.1 T1DE can be experienced in many ways and to different levels of severity. An acute risk to life is when someone restricts the amount of insulin they take on purpose, to lose weight or stop them from gaining weight.

If caught and treated early and effectively, people can recover and live well after T1DE. However currently, the Inquiry found, a lack of integrated treatment, training and support is causing preventable ill health and, in severe cases, heartbreaking loss of life.

Lesley and Neal Davison, parents of Megan Davison who took her own life aged 27 as a result of T1DE said: “Many of the people treating Megan hadn’t even heard of T1DE, so we could understand why the thought of going back to a place where even basic type 1 care was a challenge absolutely terrified her. Megan left us a letter explaining that she felt there was no place of safety and understanding available to her, and she didn’t have the energy left to continue to battle with a system that had nowhere for her to go.”

People with type 1 diabetes face a higher risk of developing eating disorders due to the intrinsic connection between type 1 diabetes and food. Type 1 involves the body mistakenly attacking insulin-producing cells in the pancreas, making food intake crucial in regulating glucose levels. People must closely monitor carbohydrate intake, be aware of their body’s response to food, and face a heightened focus on body weight during check-ups. The emphasis on ‘control’ in managing insulin and food, along with sugar as a treatment for hypoglycemia, contributes to the increased risk of developing T1DE.

The Inquiry heard from people with lived experience of T1DE and health care professionals. Their testimony showed the urgent need for a major overhaul in the way that T1DE is approached. Separate approaches in diabetes and eating disorder services have led to conflicting and inadequate care with devastating consequences.

A number of barriers to effective care for people with T1DE were identified, including:

  • A lack of an internationally recognised diagnosis criteria for T1DE
  • No NICE clinically approved pathway to prevent and treat T1DE
  • People living with T1DE need more comprehensive information and peer support services
  • The lack of a Type 1 Diabetes Patient Registry in England and Wales prevents healthcare professionals from identifying and treating at an early stage
  • Further research is required to improve treatments at every stage of the condition

There are examples of excellent practice, which the Inquiry heard need to be funded at local commissioning level. There are eight NHS England T1DE pilots, which combine diabetes and eating disorder support into one service. People using these pilot services recover from T1DE faster and the services are cost effective in reducing repeated hospital admissions. However, the long-term delivery of these services is in jeopardy unless local commissioners commit to funding the pilots permanently: a key recommendation of the Inquiry.

While the Inquiry found many failings, the UK was seen by international experts to be at the forefront of research into effective clinical interventions and to address diagnostic criteria. The Royal College of Psychiatrists has published guidance on recognising and treating T1DE in medical emergencies, a strong first step in developing a set of diagnostic criteria.

Sir George Howarth MP said: “The T1DE pilots conducted by NHS England have demonstrated that integrating diabetes and other health services, including mental health services, can significantly enhance the quality of life for people with T1DE and ultimately save lives. The NHS has showcased global leadership by allocating funds for these groundbreaking pilots. However, the current funding remains temporary. Today I would like to emphasise the urgent need for a sustained financial commitment to establish and maintain these world-leading services permanently.”

Karen Addington, Chief Executive of JDRF UK said: “T1DE is both devastating and widespread among people with type 1. It can be a frightening and lonely experience, isolating people from their loved ones. If you’re experiencing symptoms, you’re not alone. Please reach out to your GP and diabetes specialist – they’re there to guide you. JDRF’s website provides extensive information and support. Remember, T1DE is preventable and treatable. The call for a systematic approach is urgent; it will facilitate quicker diagnosis, prevention, and treatment nationwide, ultimately saving lives and averting dire health consequences for all touched by T1DE.”

If you or someone you know needs help with T1DE, speak to your Diabetes Healthcare Team and look at the JDRF website.