Pilots Announced for Tackling Diabetes Eating Disorder

Peter Russell

February 28, 2019

Pilot projects have been announced in England for the treatment of people with diabetes who have a particular eating disorder.

Two in 5 women and 1 in 10 men with type 1 diabetes are thought to have the rare condition known as diabulimia in which people restrict their insulin intake to lose weight. It is most common in people aged between 15 and 30.

Patients will be coached to deal with depictions of unrealistic body images amid increasing concerns about the potential damage social media can have on young people's mental health, NHS England (NHSE) said.

Body Image Pressure From Social Media

Claire Murdoch, national director for mental health at NHSE, said: "Body image pressure is helping to drive ever increasing numbers of young people to the health service for treatment and support and while diabulimia is rare, it can be just as deadly as other more common eating disorders.

"These pilots are another important step forward but the fact is the NHS can't do it all – wider society needs to take a long hard look at what more we can do together to protect young people's wellbeing."

NHSE said the service would provide:

  • Eating disorder teams, including team members specialising in mental healthcare and type 1 diabetes

  • Specialist day care centres, including structured meal planning and advice on glucose and insulin management

  • Tailored care ranging from hospital stays where necessary and help in the community to provide advice on diet, insulin doses, as well as mental health support

  • Training for healthcare workers to increase their knowledge of diabulimia

The pilots will begin later this year in London and on the South Coast.

Professor Jonathan Valabhji, national clinical director for diabetes and obesity at NHSE, 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.

"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 in the near future."


We asked Libby Dowling, senior clinical advisor at Diabetes UK, to explain more about diabulimia and how the new treatment regime would work.

Medscape News UK: Why do some people with type 1 diabetes need specialist help for this eating disorder?

Libby Dowling: It's a really specialist condition so it's really important that they get looked after by people who understand diabetes but also understand eating disorders.

The traditional treatment for something like anorexia is very much about taking the focus away from the food that you're eating. But of course if you've got type 1 diabetes you can't avoid focusing on food because that's how you manage your insulin levels – thinking about the food you're eating – so you've got to approach diabulemia in quite a different way.

The two are very enmeshed together, and what we know from previous practice is that the best way to deal with diabulimia is to have the mental health and the diabetes centres working together, which is what is going to happen in these two pilot centres.

Medscape News UK: What is it about social media that is exacerbating the problem?

Libby Dowling: We do live in a world where we're bombarded with 'perfect' images of people's perfect lives, perfect weights, and looking perfect all the time. And that can be quite difficult to deal with if you are struggling with your self-esteem in general.

I don't think we can put all the blame on social media but because it's so accessible and because so many young people use it, if they're seeing images on there and they feel they don't live up to them, that can actually be quite damaging to their confidence.

With social media, we need to look at it as another potential triggering factor.

If you've got someone with type 1 diabetes, that's quite a difficult condition to cope with anyway, particularly as a young person. It makes you very different from your peers, from your friends. You have to do things like inject, prick your finger, and check your blood sugar levels, be aware of what you eat, and give yourself the right amount of insulin. All of those things, but particularly as a young person, single you out as being different, and it's quite a burden.

The other side of that is the knowledge that if you don't look after it properly, you could make yourself really unwell. If you are struggling with that burden of type 1 anyway, and you're bombarded with images of people who perhaps seem to have a better, happier life than you do, then that can be a trigger for something like diabulimia.

Medscape News UK: How can healthcare professionals spot signs of diabulimia?

Libby Dowling: It is challenging for healthcare professionals without a doubt. It's a very hidden condition, and the people who are doing it are very private about it and do their best to hide it.

But there are things that healthcare professionals can be alert to. So, in no particular order, it's:

  • The person who doesn't come to the clinics as you would want them to

  • The person who doesn't want to be weighed

  • Someone who'd be coming in a lot with high blood glucose levels or diabetic ketoacidosis

  • Somebody who has a high HbA1c level

These are the types of things that could alert healthcare professionals to think of diabulemia.

And I think it's fair to say that GPs are starting to be more aware of it but we still have quite a long way to go.

Medscape News UK: How confident are you that this service will eventually be rolled out across the country?

Libby Dowling: That will of course depend very much on the result of the pilot.

We're absolutely delighted that these pilots are taking place because diabulimia is such a devastating condition. It kills people; it leaves them permanently with health problems – sight loss, kidney failure, those types of things. And we know that the specialist, integrated care doesn't happen all over the place.

So, with these two pilots I think we've got a way of looking at treating diabulimia and then assessing how successful that treatment has been. And then, like any pilot, make changes to a programme if you need to, and then hopefully see some sort of rollout.


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