Special report: ‘Death sentence’ for eating disorder sufferer unable to access treatment


TW: Eating disorders

22-year-old Katie lives in Bedford with their parents and sister. However, they may as well be on death row.

For the last eight years, Katie has been living with diabulimia[1], a condition described in a BBC documentary as ‘the world’s most dangerous eating disorder’.

It occurs when a diabetic restricts insulin to lose weight and treatment must address both the diabetes and the eating disorder.

Women with Type 1 diabetes are twice as likely to develop an eating disorder than those without diabetes and prevalence can range between 31 – 40% in women aged between 15 and 30.[2]

So complex is the condition, that many traditional eating disorder (ED) units do not have the expertise to treat sufferers. Likewise, traditional diabetes clinics and psychiatric units cannot offer the needed support either.

Falling between two stools, sufferers in the UK are being failed the help they so desperately need and essentially left to die as their families, friends and care support teams watch, helplessly.

Katie’s story

“I developed an eating disorder when I was 13,” Katie told the Bedford Independent.

“I had been diagnosed with Type 1 diabetes when I was eight and the diabulimia really started when I was 14. But I didn’t tell anyone about it until I was 19.

“I’d been receiving ED treatment on and off, but hadn’t told anyone about the diabetes/insulin.

“Before I was diagnosed with diabetes, I’d lost lots of weight and I remember a diabetes educator, who was teaching me how to use my new insulin pen, telling me that insulin was the ‘fat-grabbing’ hormone.

“I’m on an insulin pump[3] but began skipping bolus[4] insulin doses; I thought I was the only person doing it.

“I’d never heard of diabulimia.”

On 2 July 2019, Katie was admitted as an in-patient to S3 Ward at Addenbrookes in Cambridge due to high blood glucose and disordered eating.

Hugely over-subscribed, the facility has just 14 beds and is the only adult NHS specialist eating disorder unit in the whole of the East of England.

There are two private hospitals that take NHS referrals, but Addenbrooke’s is the only NHS-run unit.

Just let that sink in.

There are just 14 beds catering for an area with a population of 5,847,000[5].

“At this point, I’d been having outpatient treatment with the ED service for around a year and not making progress,” said Katie.

“My stay at S3 was originally set to last about six weeks to get me back on insulin and a regular eating pattern, but once I started treatment, we realised that the process would take a lot longer, especially if it were to be sustainable in the community.

“I was discharged on 18 September 2019 due to the original plans for a short-term admission, and my own determination to return to uni.”

However, when discharged, Katie’s eating disorder had morphed towards anorexia. “The less I ate, the less insulin I’d need and the boluses wouldn’t be needed.

“I was also heavily fuelled by a fear of bingeing. I ended up replacing one ED behaviour (bingeing) with another (restricting food). I felt if I ate a single biscuit or chip or slice of cake, I would never stop eating.

Fewer carbohydrates meant fewer boluses and therefore fewer calories.

Katie (left)

By the end of December 2019, Katie had dropped out of their final year of university, sacrificing their place at the University of Hertfordshire, studying English language, linguistics and creative writing.

“I tried to start my final year around a week after discharge but reverted to the anorexic behaviours and we all saw that it wasn’t sustainable. By this point, I had become significantly underweight for the first time ever.

“I took the decision to drop out so I could pursue the vital inpatient treatment.”

This was a devasting blow to Katie. They’d been keen to finish their treatment so that they could complete their degree.

Katie is being mentored by poet Wayne Holloway-Smith, whose recent TS Eliot Prize shortlisted book speaks of his own struggle with eating disorders.

Holloway-Smith said: “These conditions are incredibly serious and not spoken about enough with the care and nuance they deserve. What I’ve seen in Katie is someone developing a sensitive and original vocabulary to express their experience, in work that’s increasingly urgent and important.”

Despite everything, Katie has been able to celebrate some achievements with their poetry, receiving a commendation in the 2020 Magma poetry competition and having a piece published in Bath Magg.

They have also been working with Ben Salmons on the NHS ELFT ‘Break the Stigma’ campaign.

But none of this can stop the toll diabulimia is taking on Katie’s body.

‘They didn’t want me to die while I was waiting for a bed…’

Since the end of 2019, it’s been a waiting game for Katie and their family, not knowing if or when an in-patient bed is going to become available.

Katie (right) with sister Charlotte

“I had been adamant I wanted to go back to S3,” said Katie. “It’s the closest ward to home.

“An integral part of therapy is to set up a support network with family, friends and local services, plus they were also already informed on the best ways of treating my diabulimia, due to the work we had done collaboratively during my last admission.

“However, we eventually reached out further in the region and have now put referrals into ED units anywhere in England and have also applied for funding for treatment in Scotland and Wales.

“I feel like I’ve exhausted all my options.”

Recently, Katie’s support team have become increasingly worried for their welfare and wanted them admitted to a psychiatric ward in Luton. Bedford’s inpatient psychiatric facility, Weller Wing, closed in 2017.

“They said they didn’t want me to die while I was waiting for a bed,” said Katie.

“One doctor told me, ‘your death would be a disgrace on the system, but why should you pay the price for that?’”

Having resigned themself to the situation, Katie’s bags were packed and they’d mentally prepared themself to be admitted onto the ward in Luton.

However, following a meeting with the multi-disciplinary team about what would need to be in place to care for Katie, the psychiatric team said they didn’t have the expertise to take them in.

Since December 2019, Katie’s symptoms have worsened.

“I’ve had oral thrush and nail infections for about nine months and can’t stay awake for very long periods of time. I have neuropathy[6] in my legs which means they don’t work very well.

“I used to go walking and jogging to help my mental health but struggle to get up my own stairs now, plus I have lots of muscle aches and pains and numbness in my toes, legs, hips and hands.

“I also have background retinopathy[7], brain fog, a lack of energy.”

Feeling helpless

Needless-to-say, Katie’s condition has been incredibly hard on their family. “No one knows what to say about it,” they said. “My family have just had to sit and watch me decline, able to do fewer and fewer things.”

Katie’s sister, Charlotte, had a baby recently. Katie is not strong enough to hold their own nephew.

“I’m often too tired to join in with family events and if we have dinner together, I am often so anxious or unwell with high blood sugars and ketones,” said Katie.

“Even in my own home, I feel very isolated and alienated, often due to a combination of extreme anxiety and then tiredness.”

Recently, Katie had a very frank and honest conversation with their dad. “He told me how angry it made him, watching me do the worst things to myself.

“We were talking about my hopes for the future and he said “you can’t be successful if you’re not here”.”

Katie feels a lot of anger at how they’ve been let down by the system. “I genuinely can’t understand why it’s taken so long for me to get the treatment I need,” they said.

“I’ve done so much work on myself over the last year and I feel so ready to let go of this. I’ve reached a place of maturity and self-reflection and honesty that I didn’t have before.

“I and every single member of my community teams know what help I need. But it’s not there.”

Katie and sister, Charlotte

Katie is increasingly losing hope. “I’ve been running on hope and there’s not a lot left.

“I genuinely feel like the light at the end of the tunnel has gone out

“I can’t describe how willing my teams have been to learn from each other and support each other with my treatment. That’s what’s needed at an inpatient unit; the willingness to learn together about how I can get better.”

They said, “It’s not about how you look. Eating disorders are more about a sense of achievement and control over your body.

“I’ve lost control and am willing to go anywhere in the UK to get better.

“A big part of an eating disorder is a way of communicating that you’re not okay and that you need help. I desperately need the appropriate help.”

Under-funding of mental health services

Katie’s story is borne out by research undertaken by the national eating disorder charity, BEAT. They found that adults with eating disorders in England face a postcode lottery in terms of access to specialist treatment, waiting times and staffing levels at adult eating disorder services in England.

The charity wants to see a significant increase in funding for research into eating disorders.

Katie’s MP, Mohammad Yasin, said: “I have long campaigned for in-patient mental health beds to be re-introduced to Bedford and I’m pleased that we will be getting them, along with a new children and young people’s facility.

“But that’s in the future and I appreciate this doesn’t help all those who need access to help now, and my heart goes out to anyone who cannot access the right support at the time when it is desperately needed.

Help may come too late

For Katie, getting a bed wasn’t supposed to be the hard bit.

“The difficult bit is the work once I’m admitted and learning to get better,” they said. “This is not supposed to be the challenging part, this is just a precursor to the actual fight.”

Mr Yasin has promised to raise Katie’s concerns in Parliament and said, “I will do all I can to support any constituent affected by this issue but I can’t comment on individual cases.”

Despite everyone’s best efforts, help may come too late for Katie.

If you, or someone you know, needs help with an eating disorder, please contact BEAT on their free helpline: 0808 801 0677 or visit their website.

[1] nationaleatingdisorders.org/diabulimia-5
[2] Doyle et al, 2017 cited in What is Diabulimia and what are the implications for patients with Type 1 Diabetes?
[3] an insulin pump is a small electronic device that gives the body the regular insulin it needs throughout the day and night. It is attached by a tiny tube called a cannula, which goes just under the skin.
[4] Bolus insulin is a rapid-acting insulin. You take a bolus dose when you eat or if you need to give yourself a correction dose if your levels go high
[5] 2011 census
[6] Neuropathy is a type of nerve damage that causes pain and numbness.
[7] background retinopathy is an early warning sign that diabetes has led to some damage of the small blood vessels of the retina.

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