The patients with treatable eating disorders who are dying before the NHS can help them

A record number of eating disorder patients are not getting the life-saving treatment they need due to lengthy waits, leaked NHS data shows.

More than 8,000 adults are waiting to be seen for therapy, according to internal figures from NHS England – the highest figure recorded since data collection began in 2019. In March 2021, there were around 6,000 adults waiting, while it was less than 2,000 in March 2019.

One leading doctor warned that delays were leading to avoidable deaths, while multiple coroners investigating the deaths of nine patients since 2021 have repeatedly called on the NHS and ministers to improve services to prevent more.

An investigation by The Independent can also reveal that long waits have led to:

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Dr Agnes Ayton, the Royal College of Psychiatrists’ lead for adult eating disorders, said long waits meant patients were “dying avoidably” because under-resourced services were forced to turn them away or leave them waiting for years. Anorexia has the highest morality rate of any psychiatric disorder.

“One important thing is eating disorders are treatable, people can get better with time and treatment. We shouldn’t accept anorexia has the highest mortality rate because a lot of these deaths are avoidable and treatable. We should be aiming to provide high-quality care,” she said.

Data uncovered by The Independent reveals that, of the more than 8,000 people waiting for treatment to start when figures peaked in July 2022, more than 5,000 waited more than three months for a second community appointment. This is typically regarded as the point at which treatment starts.

And the latest available NHS data reveals that 18,000 adults were admitted to hospitals with eating disorders, such as bulimia or anorexia nervosa, in 2021 - up from 12,000 in 2019.

Dr Ayton recently published a paper with other doctors warning of an emerging trend of labelling anorexia as a “terminal” illness.

She referenced a case last year in which a woman with anorexia was allowed to die and interventions were withdrawn because she wasn’t responding to care. Dr Ayton said there was a risk that NHS services in the UK would begin to “give up on patients” if they’ve no capacity to treat them.

Responding to the figures, shadow mental health minister Rosena Allin Khan warned that “ongoing issues within eating disorder services are costing people their lives”.

“This is the reality of 13 years of Tory neglect of our NHS, patients are being failed,” she said, and promised Labour would seek to recruit 8,500 new mental health staff and guarantee patients treatment within a month.

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Zara Taylor took her own life in 2021 after battling an eating disorder for 10 years.

Her mother Debbie told The Independent her daughter was a “happy-go-lucky child, clever, pretty [and] always smiling …” but her battle to get the right treatment in the two years before she died became too much for her.

“You have to wait until you’re on death’s door before someone would actually do something … Zara had been in inpatient units and then they tried to get her out and into a day-patient unit [in the community].”

“We had been with the community team about two years and it was horrendous ... she turned around and said, ‘no one’s doing anything, no one’s listening to me’. We would go in, and we’d ask for help. They said they were trying to get her into the day unit that we had requested but the funding wasn’t there.”

“We really [needed] some proper support in the community because it was just her and I at home every day, trying to get her to eat, to get it stuck, trying to get her to try and have a little bit of life and there was nothing, nothing in the community offered for her so ultimately she took her life …”

Suzanne Barker and Helen Missen, founders of the charity Feast which supports families, said services “urgently” needed more funding so they could keep up with demand.

“We are now seeing a desperate situation with huge waiting lists for treatment. People with eating disorders are suffering unnecessarily,” they said.

“Contrary to what is widely perceived, full recovery from an eating disorder is possible. Early detection and intervention are so important and it is important to remember that recovery is possible at any age and at any stage.”

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The data obtained by The Independent shows just 30 per cent of adults get treatment within four weeks of a referral, and while targets and data are published for children’s services, the same does not exist for adults.

James Downs, 33, has lived with a severe eating disorder for 20 years. For most of that time, he has either been on a waiting list or unable to get treatment because of where he lives.

After years of trying to access services in Cambridge, where he lives, he still had to wait more than six months to start therapy.

Today, he finds himself at the bottom of another waiting list for a specific therapy after one treatment didn’t work. In the past six months, he’s been admitted to the hospital eight times with life-threatening symptoms, including being considered at very high risk of having a cardiac arrest.

He said: “Sometimes I feel like I have kept myself alive against the odds, and that the people who should be offering me treatment have somehow given up on people like me.

“Worse still, I have often felt blamed for not being able to manage my physical health whilst on a waiting list, with staff in A&E being frustrated to see me coming through the door again and again.”

“I believe eating disorders are treatable conditions at any stage or severity, but this message is completely missing from my care. I have had about 18 months of treatment in 18 years of illness.”

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Emily Woods, 31, from Newbury, had to travel 52 miles a day to Maidenhead because there were no closer day treatment units she could attend, after a seven-month wait for access.

She also said she faced delays because her body mass index (BMI) wasn’t considered low enough for access to treatment.

“Even at my worst and dangerously low weight, there was an expectation to travel and get myself there. The whole treatment is heavily body mass index (BMI) related. I was told many times, when I recognised I was relapsing, that I wasn’t yet a concerning weight and therefore dropped in priority.”

During the height of the Covid pandemic, Ms Woods was discharged as she couldn’t make it to the unit and her condition deteriorated so much she had to be admitted to hospital.

“The whole experience was so traumatic … ultimately people shouldn’t be turned away became their BMI isn’t deemed severely low enough … help shouldn’t be available just in the form of hospital admission when emergency care is needed and it is life or death.”

In 2020, Sean Horstead, a senior coroner in Cambridge, sent prevention of future deaths reports to NHS England and the Department of Health and Social Care following the deaths of five young women with eating disorders.

He warned there was a lack of “robust” services to monitor patients with eating disorders.

There was also a report from the health ombudsman in 2017 following the death of one of these women, Averil Hart, which called for a review of the quality and availability of adult eating disorder services.

But Dr Ayton said there has been a “limited change” since those reports and that the issue “comes down to funding”.

Meanwhile, the number of people seeking help from eating disorder charity Beat rose from 75,000 in 2020-21 to 93,000 in 2021-22.

Tom Quinn, director of external affairs for the charity, said: “Being unable to access community treatment increases the risk of needing hospital care, which can be very challenging for those affected and their families, as well as increasing cost to the NHS.”

“Whilst NHS staff are working incredibly hard to support every patient, demand for eating disorder treatment has been rapidly increasing since the beginning of the pandemic, and services are struggling to keep up.”

He called on the government to create a fully funded mental health recovery plan which includes a strategy to address the “severe recruitment and retention problems” within eating disorder services. The charity has also called on NHS England to publish waiting time data for adult eating disorder services.

NHS England did not answer specific questions on funding for adult services but said it was rolling out early intervention services for people aged 16 to 25.

The Department of Health and Social Care said it has invested £1bn in community mental health services which include eating disorder services.

If you need support Beat can be contacted online or over the phone on 0808 801 0677