Your illness worsens – so care is cut off. This is the scandal playing out in eating disorder treatment

<span>Illustration: R Fresson/The Guardian</span>
Illustration: R Fresson/The Guardian

Last week, I had a long conversation with a woman who is trying desperately to loosen the awful grip of an eating disorder. She wanted to remain anonymous; for the sake of this article, I’ll call her Jane. She is in her 30s and lives in Norfolk. Her illness, first diagnosed when she was a teenager, is known as the restricting type of anorexia, meaning that she has a long history of drastically limiting her food intake to the point of self-starvation.

Over the past 10 years or so, she has spent some of her time as an NHS inpatient. She told me about her first stay in a specialist ward, where there was “a massive turnover of staff. We all knew we needed therapy, and we couldn’t get it.” She was once moved to a residential facility hundreds of miles from home, in Scotland: “You’d hear people screaming and being held down while they were fed.” And again and again, she talked about the impossibility of coping with the repeated switch from this kind of 24/7 care to the woefully inadequate visits she received when she was allowed to go home.

Professionals and patients with experience of eating disorders talk a lot about people’s body mass index (BMI). Before concerted treatment, Jane’s had got as low as 11, which is life-threatening. When she was last discharged from full-time care, it was put between 20 and 21, denoting a healthy weight. As she tried to adjust to life outside – she had a new flat and a new job, and lived alone – she was put in the care of a support worker “who was lovely, but she had only had very basic training in eating disorders”. She began to lose weight, and was suddenly transferred to a new group of NHS personnel. They were called the intensive support team, but they said they could only see her for an hour a week.

And then came news that left her reeling: her complete discharge from the Norfolk community eating disorders service (NCEDS), the offshoot of the NHS that was meant to be looking after her. “They told me that they couldn’t keep seeing me because I was losing weight,” she told me. “So they discharged me back to my GP.” At that point, her BMI was a very dangerous 15. “But they told me things weren’t working: I wasn’t motivated.” Her paperwork said that NCEDS was now “keen to positive risk-take”, a phrase usually used to refer to taking steps to give patients more freedom while still managing their condition. Jane felt she was up against truly impossible logic: the more ill she became, it seemed, the less likely she was to get treatment. Now, in fact, her worsening condition had resulted in her simply being cut loose.

As far as plenty of campaigners and professionals see it, stories such as these are proof of the increasingly dysfunctional rationing of treatment, as eating disorders afflict ever-increasing numbers of people. About 75% of those affected are female. Between 2016 and 2021, the number of patients treated in English hospitals for an eating disorder went up by 84%, from about 13,000 to 24,000. Now, 1.25 million people in the UK are reckoned to have one of the relevant conditions. And the rate of increase among young people seems flatly terrifying: in 2023, NHS figures suggested that the proportion of people aged 17-19 with an eating disorder stood at 12%, up from 0.8% only six years before.

Insiders and experts talk about the psychological effects of life in lockdown, a collective panic about obesity that feeds many people’s anxieties about their weight, and the insidious effects of social media. But all these explanations are tentative, at best: all that is currently clear is that illnesses that may have once sat outside the national conversation – as difficult to treat, nightmarish to experience, but somehow on the edges of everyday existence – are now at the centre of the lives of huge numbers of people. Thanks to the charity Beat, the next seven days are designated as Eating Disorder Awareness Week; because of the sense of a mounting crisis, this year’s flurry of PR and run of events have a distinct sense of urgency.

I was put in touch with Jane by the eating disorders campaigner Hope Virgo, a survivor of anorexia who now campaigns full-time for big changes in the way eating disorders are treated. She told me she had recently heard from several people in Norfolk who had stories to tell that highlighted problems that are mounting all over the country, and suggested I first have a look at a case that belatedly shone a light on how poor NHS eating disorders services can be: that of Averil Hart, a student at the University of East Anglia who died in 2012, aged only 19. In 2017, a report published by the parliamentary and health service ombudsman found that the care coordinator assigned by NCEDS to assist her “had no experience of looking after people with anorexia nervosa”. The inquest into her death finally took place just over three years ago: among its other damning conclusions, it found that the care provided by NCEDS had been affected by a “staffing crisis”, and that the service had failed to properly respond to urgent concerns raised by her family.

Another reason to look closely at the east of England, Virgo told me, was a leaked guidance document circulated around the NHS in that region back in 2022. It was about patients with what the medical vernacular calls severe and enduring eating disorders (Seed), and the suggestion that they could be put on a so-called palliative pathway, “without the focus being on full recovery or weight gain”, but attention paid instead to “physical health monitoring”, and “pain and symptom management”. Here, perhaps, was a codified statement of what treatment-rationing means in practice. There was a small flurry of alarm, but it soon died down: eastern England, after all, is one of those parts of the country that people in positions of power and influence do not tend to be terribly interested in.

With that in mind, I carried on speaking to people with experience of the NHS in Norfolk. I spoke to Charley Poultney, who began her second spell of 24/7 treatment for so-called binge-purge anorexia in October 2019. After only six weeks, she was discharged as an inpatient with a BMI of 15 (“which is a really poor BMI, on the boundary of severe anorexia”), and offered the same kind of outpatient care as Jane, before she too was discharged to the care of her GP. Subsequent NCEDS paperwork said she “did not want to engage with NCEDS on any level”. She insists she desperately wanted treatment, but that it had to be different from the kind of care that had only resulted in failure.

Her BMI went down to 13; because of her low levels of potassium, she was at risk of a heart attack. Having been sectioned and admitted to the gastroenterology ward of a general hospital, she was eventually found a bed in an eating disorders facility in London, and successfully treated. “I’m doing really well now,” she said. But her past experiences, she insisted, boiled down to the sense that her condition “didn’t fit in any of NCEDS’ boxes”.

The next day, I spoke to a woman who has been in and out of full-time care for anorexia eight times, punctuated by returns home when she has been discharged from the care of Norfolk’s eating disorders service. This last happened about two months ago. Her current BMI is 14. About two years ago, she was contacted by an NHS palliative care team; she also told me that her death was raised as a prospect in her last meeting with NCEDS, which happened on Microsoft Teams. The conversation we had was unbelievably harrowing, full of the sense of someone who had become desperately ill, while also being repeatedly told they had run out of options.

NCEDS is run by the Cambridgeshire and Peterborough NHS foundation trust. When I got in touch, it said NCEDS was “committed to providing the very best care”, and though it cannot comment on individual cases, it insisted its clinicians “operate within all national guidelines”. It said changes introduced in recent years have led to “the recruitment of additional staff, a reduction in out-of-area placements, and the implementation of further intensive community support”.

There is one final detail in the recent story of eating disorders treatment in the east of England. One of the most senior professionals in the NHS’s Norfolk service is Dr Daiva Barzdaitiene, who achieved brief notoriety when she wrote a starkly worded article in the newsletter of the Royal College of Psychiatrists, published in 2022. When it came to what she called “severe and complex eating disorders”, she warned against “harmful compassion” – and, as she saw it, the fact that “countless attempts to treat people who do not want to change take away resources from the people who have recently developed an eating disorder and could be helped”. She also insisted that NHS staff “should be respected for their hard work and not blamed if a person dies from an eating disorder”.

I asked the Cambridge and Peterborough trust if her views had influenced the way NCEDS delivers treatment, but it didn’t offer any comment. In many cases, her piece seemed to suggest, discharging people can be the best option. “We need to take positive risks, which means stepping back if there are no changes or if the patient’s behaviours are getting worse,” she wrote. In the context of the stories I have heard, those words highlight a sense of deepening illness meaning that treatment is snatched away. Whatever the word “care” might mean in the midst of an increasingly overwhelmed health service, that surely suggests the precise opposite.

  • John Harris is a Guardian columnist