Your disease worsens – so care is stopped. A scandal is unfolding in the treatment of eating disorders | John Harris

LLast week I had a long conversation with a woman who is desperately trying to loosen the terrible 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 thirties and lives in Norfolk. Her disease, first diagnosed when she was a teenager, is known as the restrictive form of anorexia, meaning she has a long history of drastically restricting her food intake to the point of self-starvation.

For the past ten years she has spent part of her time as an inpatient on the NHS. She told me about her first stay in a specialized department, where there was “huge staff turnover.” We all knew we needed therapy, but we couldn’t get it.” She was once transferred to a residential facility hundreds of miles from home in Scotland: “You could hear people screaming and being held down while they were being fed.” And again and again, she spoke of the impossibility of coping with the repeated transition from this kind of 24/7 care to the woefully inadequate visits she received when she was allowed home.

Professionals and patients with experience with eating disorders talk a lot about people’s body mass index (BMI). Before the joint treatment, Jane’s score was only 11, which is life-threatening. When she was last discharged from full care, this was estimated to be between 20 and 21, indicating a healthy weight. As she tried to adjust to life on the outside – she had a new flat and a new job, and was living alone – she was left in the care of a care worker – who was kind, but she had only had basic services. training in eating disorders. She started losing weight and was suddenly transferred to a new group of NHS staff. They were called the intensive support team, but they said they could only see her for an hour a week.

And then came the news that left her reeling: her complete dismissal from the Norfolk Community Eating Disorders Service (NCEDS), the offshoot of the NHS tasked with caring for her. “They told me they couldn’t keep seeing me because I was losing weight,” she told me. “So they sent me back to my GP.” At the time, her BMI was a very dangerous 15. “But they told me things weren’t working: I wasn’t motivated.” Her paperwork showed that NCEDS was now was “keen to take positive risks,” a phrase commonly used to refer to taking steps to give patients more freedom while still managing their condition. Jane felt like she was faced with a truly impossible logic: the sicker she got, it seemed, the less likely she was to get treatment. Now her deteriorating condition had effectively resulted in her simply being cut loose.

As far as many campaigners and professionals see it, stories like these are evidence of the increasingly dysfunctional rationing of treatment as more and more people struggle with eating disorders. About 75% of those affected are feminine. Between 2016 and 2021, the number of patients treated for an eating disorder in English hospitals increased by 84%, from around 13,000 to 24,000. Now, 1.25 million people in Great Britain are deemed to meet one of the relevant conditions. And the rate of increase among young people seems downright frightening: by 2023, NHS figures suggested that the proportion of people aged 17 to 19 with an eating disorder stood at 12%compared to 0.8% just six years earlier.

Insiders and experts discuss the psychological effects of life in lockdown, a collective panic about obesity that is fueling many people’s concerns about their weight, and the insidious effects of social media. But all these explanations are tentative at best: all that is clear at the moment is that diseases that have once sat outside the national debate – equally difficult to treat, nightmarish to experience, but somehow on the edge of everyday existence – are now central to the lives of large numbers of people. Thanks to the Beat charity, the next seven days have been designated as Eating Disorder Awareness Week; Due to the sense of a growing crisis, this year’s PR wave and series of events have a clear sense of urgency.

I was put in touch with Jane by eating disorder campaigner Hope Virgo, an anorexia survivor who now campaigns full-time for major changes in the way eating disorders are treated. She told me that she had recently heard from several people in Norfolk who had stories to tell that highlighted the problems happening across the country, and suggested that I first look at a case that belatedly shed light on how bad the NHS eating disorder services are. could be: that of Averil Hart, a student at the University of East Anglia who died in 2012, aged just 19. In 2017, a report published by the Parliamentary and Health Ombudsman found that the care coordinator appointed by the NCEDs to help her… “had no experience of caring for people with anorexia nervosa”. The inquest into her death finally took place just over three years ago: among other damning conclusions, it found that the care provided by the NCEDS had been hit by a ‘staffing crisis’ and that the service had failed to respond adequately to pressing issues . concerns of her family.

Another reason to look closely at the east of England, Virgo told me, was: leaked guidance document circulated around the NHS in that region in 2022. It was about patients with what the medical language calls severe and long-lasting eating disorders (SEED), and the suggestion that they could be put on a so-called palliative program, ‘without the emphasis on full recovery or weight gain’, but the focus is instead to “physical health monitoring” and “pain and symptom management.” Here perhaps was a codified explanation of what treatment rationing means in practice. There was a brief wave of concern, but it soon dissipated: after all, the East of England is one of those parts of the country that people in positions of power and influence are generally not very interested in.

With that in mind I continued to talk to people with experience of the NHS in Norfolk. I spoke with Charley Poultney, who began her second bout of 24/7 treatment for so-called binge-purge anorexia in October 2019. After just six weeks she was admitted to hospital with a BMI of 15 (‘what a very poor BMI, on the borderline of severe anorexia’), and provided with the same type of outpatient care as Jane, before she too was discharged to care from her GP. Subsequent NCEDS paperwork revealed that she “did not want to engage with NCEDS on any level.” She insists she was desperate for treatment, but it had to be different from the kind of care that had only led to failure.

Her BMI dropped to 13; her low potassium levels put her at risk for a heart attack. After being sectioned and admitted to the gastroenterology department of a general hospital, she was eventually found on a bed in an eating disorders clinic in London, where she was successfully treated. ‘I’m doing really well now,’ she said. But her past experiences, she emphasized, amounted to a feeling that her condition “didn’t fit into any box of the NCEDS.”

The next day I spoke to a woman who has been in and out of anorexia care full-time eight times, interrupted by a return home when she is 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 approached by an NHS palliative care team; she also told me that her death was mentioned as a prospect during her last meeting with NCEDS, which took place on Microsoft Teams. The conversation we had was incredibly moving, full of the feeling of someone who had become desperately ill, while also being told repeatedly that there were no options left.

NCEDS is managed by the Cambridgeshire and Peterborough NHS Foundation Trust. When I contacted it said the NCEDs were ‘committed to delivering the very best care’, and while it could not comment on individual cases, it insisted that doctors would ‘operate within all national guidelines’. It says 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 about eating disorder treatment in the east of England. One of the most experienced professionals within the Norfolk NHS is Dr Daiva Barzdaitiene, who briefly rose to prominence when she wrote a starkly worded letter: article in the newsletter from the Royal College of Psychiatrists, published in 2022. When it came to what she called ‘serious and complex eating disorders’, she warned of ‘harmful compassion’ – and, as she saw it, of the fact that ‘ ‘Numerous attempts to treating those who are unwilling to change is taking resources away from people who have recently developed an eating disorder and could be helped.” She also stressed that NHS staff should be “respected for their hard work and not blamed when someone dies from an eating disorder”.

I asked the Cambridge and Peterborough Trust if its views had influenced the way NCEDS delivers treatment, but no comment was provided. In many cases, her piece seemed to suggest, firing people may be the best option. “We must take positive risks, which means taking a step back if no changes occur or if the patient’s behavior worsens,” she wrote. In the context of the stories I have heard, these words emphasize a sense of deepening the disease, meaning the treatment is being taken away. Whatever the word “care” means in the midst of an increasingly overburdened healthcare system, it certainly suggests the exact opposite.