Diabulimia: the world’s most dangerous eating disorder

Diabetes and mental health teams on the south coast of England and in London have joined forces in pilots funded by NHS England to tackle what the media call “diabulimia,” also described as “the world’s most dangerous eating disorder.”

Diabulimia is an eating disorder in which patients with type I diabetes restrict insulin to lose weight and which can lead to early onset of serious diabetes complications such as blindness and amputations. It is most common in young people aged between 15 and 30, particularly women, and involves a complex interaction of factors—such as insulin, blood glucose, emotions, and body image—that cross diabetes care and mental health.

Dasha Nicholls, chair of the Royal College of Psychiatrists’ eating disorders faculty, said: “Because diabetes forces you to focus on what you eat, it’s not unusual for that to get tangled up with feelings about food, weight, and body image. That can become dangerous very quickly.”

Patients make a link between insulin and weight gain right from diagnosis, explained Helen Partridge, consultant and clinical lead for diabetes and endocrinology at the Royal Bournemouth Hospital; profound weight loss is often an indicator of type 1 diabetes and when patients start taking insulin they put weight back on.

Around one in five women and two in five men with type 1 diabetes are believed to omit their insulin at some point to try to lose weight. The south coast pilot, which Partridge is involved with, will aim to identify patients at risk so that a multidisciplinary team can provide early psychological support.

These are frail patients, often disengaged from secondary and even primary care services, who are likely to present repeatedly at emergency departments with acute ketoacidosis, Partridge said.

The pilot will send a rapid response team into emergency departments and educate primary care staff to consider whether there may be reasons a patient may be struggling to control their diabetes.

Reasons can be explored by the multidisciplinary team at joint clinics and through phone support. Patients will be encouraged to make slow changes to bring their blood sugar down, perhaps increasing insulin by just one unit a week.

“As diabetologists we have no idea how to manage eating disorders and the eating disorders team have no idea how to manage diabetes, so it’s very much a multidisciplinary thing. You can’t separate them out, you can’t treat one without the other,” Partridge said. Even their way of working is different, with diabetologists allowing patients to take ownership, whereas the eating disorders team take control, she added, so it’s important to integrate two approaches according to what the patient needs at that time.

Where required, patients can be referred to a variety of eating disorder workshops attended by members of the diabetes team, or even admitted as in-patients.

The second pilot, run by King’s Health Partners in London, which has been providing specialist support to patients with diabulimia for some years, will attempt to demonstrate the effectiveness of an integrated diabetes and mental health approach in a cohort of 40 patients with severe symptoms.

If the two pilots prove successful, the multidisciplinary approach will be rolled out across England.

Jonathan Valabhji, national clinical director for diabetes and obesity at NHS England, said: “With further emerging evidence from these pilot sites and more joined up working as part of the NHS Long Term Plan, we will treat many more patients in the near future.”

Tony Winston, a consultant in eating disorders who set up the country’s first specialist service for patients with diabetes at the Aspen Centre in Warwick in 2011, welcomed the pilots but pointed out that patients with the much more common type 2 diabetes had a similar prevalence of eating disorders.

“There has been almost no attention given to type 2 diabetics who we also see in our clinic and are also a neglected group,” he said. “With type 1, the most reliable data we have is for young women which suggests that about 10% of them will have an eating disorder versus around 4% in the general population—so it is more than double. In type 2, some figures suggest as many as 10% may have an eating disorder, but it’s rarely recognised.”

Patients with type 2 diabetes who use insulin to control weight need a similar management strategy as type 1 patients, but the most common problem in type 2 patients, who tend to be older, is binge eating and morbid obesity, he said. For these, the clinic uses a two stage approach, first normalising the patient’s eating by identifying and tackling the underlying emotional problems, and then tackling weight management through tailored exercise programmes.

Most patients seen at the Aspen centre have been referred, so have severe problems. “Diabetes professionals often don’t feel they have the confidence to raise what might be a sensitive matter with their patients,” Winston said. “Firstly, we are trying to develop a training programme, and then, secondly, a very simple screening questionnaire that can be used in routine diabetes consultations to see if there is any evidence that the patient might have an eating disorder.”