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Crippling lack of awareness surrounding diabulimia

Consultant Jane Morris.
Picture by Colin Rennie.
Consultant Jane Morris. Picture by Colin Rennie.

The tarnished gold of autumn leaves dapple in the sunshine, and there’s a nip in the air despite the clear blue sky.

People are hurrying to work, punching in codes as doors lock behind them at The Royal Cornhill Hospital in Aberdeen.

By the time the trees are stripped bare and winter truly sets in, patients currently receiving care at The Eden Unit may have been discharged – ready to move forward in their treatment once they are no longer classed as one of the most severe cases in the north-east.

But for now, each day revolves around meal times in the dining hall within the unit where carefully balanced portions are laid out alongside snacks.

Staff eat with the patients and can find themselves entering a battle to see even the tiniest morsel consumed, but they must do so with compassion towards those who are terrified to touch the food placed in front of them six times a day.

The Eden Unit is the only NHS in-patient unit specialising in treating those with eating disorders in the whole of Scotland, and it remains one of only two units in the entire UK with expertise in a little-known condition.

Until recently, few people knew of an eating disorder called diabulumia – so named because it sees Type 1 diabetics limit their insulin to control weight.

This can quickly spiral into a cycle of hunger and binge eating, with a potentially fatal outcome.

Sufferers risk blindness, amputation, kidney failure and ultimately death, but there is limited help on offer from professionals not used to dealing with the added complication of diabetes.

It may seem incomprehensible to those who do not rely on insulin to survive, and it is believed the condition can be triggered by slight weight gain linked to taking insulin.

Experts believe that a high proportion of those suffering from diabulimia are going untreated, with the majority of questionnaires aimed at identifying eating disorders not geared towards diabetics specifically.

Many people with the condition find themselves shunted between different care providers who do not have the expertise to deliver the treatment needed, that is until they are given a place on the 10-bed Eden Unit.

In many cases, admission goes on to save their life and they will spend a minimum of six weeks undergoing assessment and treatment.

The majority of patients end up staying for much longer, and sometimes have to be detained if they attempt to leave. Patients will be treated by a host of experts from dieticians to doctors, but the 30-strong team do not wear uniforms in a bid to demonstrate different body shapes and promote a less medical environment.

Doors are locked and bathroom trips monitored, but there is hope to be found amid the grim reality of treating those in the grip of an eating disorder.

The staff treat each other as family, and “thank you” cards from former patients adorn the walls of Jane Morris’s office.

Consultant psychiatrist for the unit, she greets everyone as a long-lost friend and is quietly determined that the work done by the team can and will continue to save lives.

Perhaps the most poignant signs of recovery are the pictures of newborn babies which line the shelves, with former patients getting in touch to reveal their joy at motherhood.

New life would once have seemed inconceivable for those battling an eating disorder, and Jane shares in the happiness of those who were once not allowed to leave Eden for their own safety.

She believes there is a crippling lack of awareness surrounding diabulimia, and is clearly passionate about her work. With her expressive eyes rimmed in kohl, her door is always open to both staff and patients and she is proud that the team, including consultants, are all based on the unit as opposed to offices elsewhere in the hospital.

“We treat many different kinds of eating disorders at the unit, some eating disorders we have never come across before and probably never will again,” she said.

“But we make it our mission to get the expertise so we can help, and diabulimia falls into that category,

“Diabetics have the very weapon in their hand which will allow them to lose weight at the drop of a hat; sufferers are slowly killing themselves whether they intend to or not.

“Abusing insulin can be fatal, and one of the symptoms of diabetes before diagnosis is weight loss.

“Once a routine of injecting insulin is started, weight gain will obviously occur, although not to any major extent.

“After someone has been referred to the unit, we will take over their insulin regime and try to start the process of recovery.”

The length of time spent in Eden varies from patient to patient, and although some patients come voluntarily, they often have to be detained during the recovery process.

“We had one patient return to us and she was very clear when she said in that moment she wanted to be treated but in a few days we’d probably have to detain her,” said Jane.

“She told us we shouldn’t hesitate in doing so and I think that is incredibly poignant – she realised herself that we’d have to step in.

“Patients can see us as fighting them at some point because they cannot tolerate the treatment.

“If you were to ask a patient what they do here day to day, they’d probably tell you that all they do is eat.

“No matter what happens, there are six mealtimes; a patient can arrive at 11am and come 12.15, it will be lunchtime regardless of the fact that they might say they don’t eat lunch.

“It can be impossible to understand mealtimes from an outsider’s point of view, but just imagine you have to go bungee jumping six times a day.”

Those suffering from diabulimia will often encounter pain in their joints, circulation problems ending in amputation and kidney failure which can mean a transplant is needed.

“You’re caught in a double bind, as someone with diabulimia will struggle to sleep due to feeling thirsty and hungry and that can lead to bingeing,” said Jane.

“A binge is probably the most terrifying thing for someone who has an eating disorder.

“Detaining someone can be very distressing for staff because a patient will see us as the enemy.

“We have to bring out the big guns, almost as you would do in a hostage situation, because we view our patients as taken hostage by their eating disorder.

“It becomes this thing we need to liberate them from.”

There are six individual bedrooms and a four-bed dorm, but patients will normally be placed on their own when they first arrive.

It is not uncommon for patients to attempt to exercise in the bathroom or force themselves to vomit, but staff are well versed in dealing with this behaviour.

The majority of patients at Eden are female, although Jane believes that men are often overlooked.

“If a man has diabulimia, his inability to get on top of his diabetes and control his insulin will probably be dismissed and it certainly won’t be put down to an eating disorder,” she said.

“I think both men and women are going undiagnosed and that’s what makes our work here even more important; our staff keep learning so our patients are never forced to tick a box with symptoms they don’t entirely conform too.

“Former patients often come back to us and say that coming here saved their life. To see them well and happy is the reason we keep going even when it might seem impossible.”

It is estimated that 40% of all women between the ages of 15-30 with Type 1 diabetes give themselves less insulin in order to lose weight. Women with Type 1 diabetes are twice as likely to develop anorexia or bulimia.

Ann Gold, Consultant and Clinical Lead in Diabetes, NHS Grampian, said: “The incidence of mental health problems including anxiety, depression and eating disorders in people with diabetes is much higher than the general population.

“Omitting insulin and running glucose levels at a higher than ideal level not only significantly increases the risk of long term complications but also makes the person feel more tired and unwell in the short term.

“When working with patients with eating disorders and diabetes there is a need for involvement of all members of the diabetes multi-disciplinary team i.e. doctors, specialist nurses and diabetes specialist dietitians.

“Excellent liaison between the team providing support for the mental health issues and the diabetes team is essential and can be achieved with case meetings and shared reviews of the patient. In an in-patient setting education and support for the diabetes management for the mental health nurses is essential.”

WATCH: Diabulimia: The World’s Most Dangerous Eating Disorder follows the lives of three young sufferers. The documentary can be viewed on BBC iPlayer.