Parliamentary Inquiry calls for urgent action on type 1 and disordered eating

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

T1DE can have life-threatening consequences for someone’s 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. However, T1DE is not widely recognised or understood.

How does T1DE affect someone living with it?

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 is limited.

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, the Inquiry found that there is currently a lack of integrated treatment, training and support, which is causing preventable ill health and, in severe cases, heart-breaking 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.”

Why are people with type 1 at higher risk of disordered eating?

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 with type 1 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.

Sharing the voices of people with type 1

The Inquiry, for which JDRF UK provided Secretariat support, heard from people with lived experience of T1DE, as well as healthcare professionals and clinicians. 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.

Identifying barriers, failings and opportunities

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

• A lack of an internationally recognised criteria for diagnosing T1DE
• No clinically approved pathway to prevent and treat T1DE from NICE, the body who review and recommend treatments to the NHS
• People living with T1DE need more comprehensive information and peer support services
• The lack of a register of everyone who lives with type 1 in England and Wales prevents healthcare professionals from identifying and treating T1DE 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 seven 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 how 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.

Calling for change and supporting people with T1DE

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 ground breaking 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 or visit our T1DE page for more information and links to further support.