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Treatment for Type 1 Disordered Eating requires essential changes, Parliamentary Inquiry report says

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A Parliamentary Inquiry report has highlighted the risks of disordered eating among people living with type 1 diabetes and calls for essential changes to be made to provide effective care.  

The Parliamentary Inquiry, chaired by Rt. Hon Theresa May MP and Sir George Howarth MP, has also addressed systemic treatment flaws for people living with type 1 diabetes and disordered eating (T1DE).  

The report, which has been written by the charity JDRF, has laid out a framework to better help people living with type 1 diabetes and disordered eating, reduce long-term NHS costs and save lives. 

What is Type 1 Diabetes and Disordered Eating? 

T1DE can be experienced in different ways. It can include forms of anorexia, bulimia or a person with type 1 diabetes reducing or not taking their insulin in order to lose weight.  

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, but the report says that T1DE is not widely recognised or understood.  

T1DE can lead to serious consequences such as unstable blood glucose levels and an increased risk of physical and mental health complications, such as depression and anxiety.  

T1DE can have different levels of severity. It can be life-threatening when someone knowingly restricts the amount of insulin they take in order to lose weight, or to stop them from gaining weight.  

But if T1DE is identified and treated early and effectively then people can go on to recover and live well.  

What the Parliamentary Inquiry found 

The Parliamentary Inquiry into T1DE launched in June 2022 and has been supported by the charity JDRF which have written the report, published on 23 Jan 2024. The Inquiry gathered evidence from healthcare professionals, researchers as well as people with lived experience of T1DE. We also contributed to this Inquiry.   

The Inquiry cited the testimony of those impacted by T1DE as showing the urgent need for a major overhaul in the way T1DE is treated.  

The Inquiry say in their report that there is a lack of training and support for people with T1DE, and a lack of integrated treatment that can, in severe cases, lead to loss of life.  

They also identified several barriers to effective care for people with T1DE, including: 

  • A lack of an internationally recognised diagnosis criteria for T1DE  
  • No clinically approved pathway to prevent and treat T1DE  
  • A lack of comprehensive information and peer support services for people affected by T1DE 
  • A lack of a Type 1 Diabetes Patient Registry in England and Wales, which prevents healthcare professionals from identifying and treating T1DE at an early stage.  

The report also called for further research to be conducted to improve treatments at every stage of the condition. 

New research into T1DE is underway 

However, the report also found that the UK was recognised by international experts to be at the forefront of research into addressing a diagnostic criteria for T1DE, as well as developing effective clinical interventions.  

The Royal College of Psychiatrists has published guidance on recognising and treating T1DE in medical emergencies. There are currently eight NHS England T1DE pilots which combine diabetes and eating disorder support into one service, which helps people recover faster from T1DE and reduces repeated hospital admissions.

We have supported NHS England in the development of these pilots and are calling for long-term funding to ensure that these crucial services are sustained. We have also have been funding Dr Chrissie Jones from the University of Surrey to develop an intervention for parents and carers designed to help children with type 1 diabetes avoid eating problems. 

Colette Marshall, Chief Executive of Diabetes UK, said:  

“Type 1 diabetes-related eating disorders (T1DE) are incredibly serious conditions which can, in the worst cases, have fatal consequences. However, T1DE is not widely understood and disjointed systems are failing those who need specialist help and support.

“This landmark report sets out what must be done and why it must be an urgent priority. We fully support all of the recommendations, including the call to commit to the continuation of the NHS England pilot projects for T1DE which, crucially, combine diabetes and eating disorder support into one service.”

Read the full Parliamentary Inquiry report: Type 1 Diabetes and Disordered Eating: Parliamentary Inquiry (PDF, 1,873KB) 

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