Diabulimia, which can be fatal, occurs if type 1 diabetics stop taking insulin to lose weight

This article is more than 1 year old

This article is more than 1 year old

Diabetics who also have a rare and potentially fatal eating disorder are to start receiving specialist NHS help to reduce their risk of suffering its “devastating” consequences.

About 55,000 people in England with type 1 diabetes also have diabulimia, which occurs when a person with the condition stops taking insulin regularly because they want to lose weight.

Support from nurses and counsellors for people with diabulimia will include advice on how to prevent harmful social media postings from affecting their behaviour.

Leading doctors and health charities said the little-known condition can lead to a stroke, kidney failure, an amputation, blindness or even death.

NHS England is bringing specialists in diabetes and eating disorder care, who usually work separately, into new combined teams that will help patients in London and on the south coast.

Hundreds of people will be treated by teams centred on King’s College hospital in the capital and Royal Bournemouth hospital in Dorset. NHS England hopes the pilots will show health professionals the best way to treat those with diabulimia.

An estimated 42,000 women and 13,000 men in England who have type 1 diabetes – the autoimmune version of the disease, which is not linked to lifestyle – also have diabulimia. People with type 2 diabetes cannot get it.

Prof Jonathan Valabhji, NHS England’s national clinical director for diabetes and obesity, said: “As a diabetes clinician I’ve seen first-hand the devastating impact that this condition can have on people and their families, and so these services are an important step forward in the recognition of diabulimia.”

Many people with diabulimia do not tell friends and family they are not taking regular doses of insulin, which adds to the difficulties NHS staff face in spotting those who have it.

Most type 1 diabetics who skip doses of insulin do so to reduce the weight gain that taking it can involve.

Diabetes UK said: “Diabulimia is serious, but it’s not a recognised mental health condition in its own right. And because it isn’t widely understood, some healthcare professionals may not spot the signs or know how to support someone with it.”

The Labour MP George Howarth has been campaigning to raise awareness of diabulimia since his daughter Sian died from it aged 24 in 2011.

Dr Dasha Nicholls, the chairwoman of the Royal College of Psychiatrists’ eating disorders faculty, said: “Because diabetes forces you to focus on what you eat, it is not unusual for that to get tangled up with feelings about food, weight and body image.

“But in the case of diabetes that can become dangerous very quickly, because of the impact on blood sugar levels.”

Welcoming the announcement, Tom Quinn, the director of external affairs at the eating disorders charity Beat, said: “Standard treatments for people with eating disorders often don’t provide the right support for people who also have diabetes, who may experience additional issues including the misuse of insulin and its extremely serious consequences.”