Diabetes and T1DE

In the UK former Conservative Prime Minister Theresa May MP and former Labour Minister Sir George Howarth chaired a Parliamentary Inquiry on the risks of disordered eating among people living with Type 1 diabetes (T1D). Their report calls for essential changes to be made to provide effective care.  

The report, which has been written by the charity JDRF, has laid out a framework to better help people living with T1D and disordered eating, reduce long-term health service costs and save lives. 

T1DE can be experienced in different ways. It can include forms of anorexia, bulimia, or a person with T1D 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 T1D, 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. 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.  

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

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.  

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, was highlighted in the report.  

Several barriers to effective care were identified 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. 

In the UK the Royal College of Psychiatrists has published guidance on recognising and treating T1DE in medical emergencies.

Advocacy Action: T1DE can be affecting your communities. Ask your parliamentary representatives to not miss out lesser recognised conditions, like T1DE, in the national diabetes plans and frameworks.