The first centre joining up diabetes and psychiatry experts opened in King’s College in London in early September, but the Sheffield branch of Diabetes UK said it is very unlikely such a service will come to the city any time soon.
Diabetes affects more people in Sheffield than any other medical condition.
Although one in three young women with Type 1 diabetes have concerns about their weight or problems with their food, one diabetes-related eating disorder remains medically ‘unrecognised’.
Diabulimia, also known as ED-DMT1, is when a person with diabetes purposefully skips insulin doses in order to lose weight.
Clare Allison, aged 31, from Chesterfield, has had Type 1 diabetes since she was two years old.
Low self-esteem, deaths in the family, and constantly being weighed at doctors’ clinics meant that from the age of 12 Clare began to have concerns about her weight.
“There can be a lot of pressure from diabetes clinics. When you go there there’s a lot of focus on numbers, how your blood sugar levels are doing, how much you weigh, what your blood pressure is.”
“I didn’t talk to anyone about how I was feeling, I just internalised it all,” she said.
Clare's eating patterns became disordered as she over-ate or restricted her food at irregular intervals.
By the age of 16 she had developed bulimia. When she left home to study at Oxford Brookes University she began to develop the widely unheard of condition, diabulimia.
“I started to use my insulin as another way to lose weight. By that time, I was quite severely bulimic.
“Once I started omitting my insulin it spiralled ever more.”
Her symptoms from diabulimia included dramatic weight loss, feeling constantly very tired and thirsty, muscle pain, a racing heart and thinning hair.
Death by diabetic ketoacidosis, cerebral oedema, pulmonary oedema, multiple organ failure and cardiac failure are all common in those who have suffered from diabulimia.
“My mum instigated talking to my diabetes team at home and then they referred me to a psychiatrist who then referred me for counselling.
“But things continued to get worse and worse over the next year because it wasn’t really specialist help.
“The diabetes team that I had at the time didn’t really have any understanding of eating disorders. It was just touching the tip of the iceberg.”
It was another year before Clare was referred to an eating disorder service in Oxford, but her road to recovery was stalled because of the lack of communication between the eating disorder experts and diabetes specialists.
“The eating disorder service didn’t know anything about diabetes and I had to educate them.”
Clare was put in charge of injecting her insulin even though a major reason for being so unwell was that she was choosing to skip insulin injections.
She said a joined-up centre in Sheffield is what South Yorkshire needs to tackle the dangerous condition.
“Joined-up care is the key to treating people with diabetes and an eating disorder.
“It’s known that the earlier you get treatment for an eating disorder the better the treatment outcomes are. If there’s joined-up care it’s going to be beneficial.”
With the help and support of her husband, Ben, Clare has made a strong recovery since 2007.
“When I get stressed or when I’m really tired, my eating is the first thing that goes a bit wobbly. But I know what my triggers are so I can keep on top of that.”
READ MORE: Diabulimia explained
Andy Broomhead, Chairman of the Sheffield Group for Diabetes UK, agreed there is a problem with treatment: “I think the overall levels of support for people with diabetes are a long way off where they need to be.”
But Mr Broomhead also said a joined-up clinic was unlikely.
“Across the country you will find very few people who are diabetologists as well as psychologists.
“I just do not think those people exist. It is too much to ask.
“Of course ensuring that people with diabetes in Sheffield also managing an eating disorder get the appropriate care and support is paramount, but I think it's a lot more complex than opening a clinic to that effect locally.”
A new standard released by the National Institute for Health and Care Excellence (NICE) in July recommended that “Children and young people with Type 1 or Type 2 diabetes are offered access to mental health professionals with an understanding of diabetes.”
But Mr Broomhead believes the NICE guidelines will remain a distant aspiration.
“If you have got a service that you can staff and fund then obviously it is wonderful, but it is particularly difficult these days.”
But Mr Broomhead said healthcare providers across the UK will wait to see how the King’s College unit performs before setting up their own centres - and that could be years.
“I would be very surprised if you see similar clinics and services across the country.”
Northern General Hospital had two consultant clinical psychologists in diabetes care until four years ago.
No one at Sheffield Teaching Hospitals felt ‘qualified to talk about diabulimia as it is an unrecognised medical condition’.
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