Severely unwell eating disorder patients who are not responding to treatment are being discharged owing to a rationing of care, the Royal College of Psychiatrists has said.
Patients with extremely low body mass indexes are being dumped from treatment plans in some areas because they are not getting better quickly enough amid increased demand and pressure on services. Admissions for eating disorders have risen by 84% in the past five years.
In recent years, eating disorder psychology has recognised a sub-group of anorexia known as severe and enduring eating disorders (Seed). This covers people who have been very unwell for years.
Agnes Ayton, the chair of the Royal College of Psychiatrists’ eating disorders faculty, said a lot of services were using the Seed concept as a way of rationing services, and so it had backfired.
“They are saying that if a patient is ill for … three to five years then the likelihood of them getting better is limited, so therefore we should not be focusing on active treatment. But the evidence base for this is really poor,” she added.
“It is a defeatist attitude and the solution is to invest in more services. But they are discharging patients. It’s a postcode lottery and it depends where you are. Some services would not consider withdrawing care, certainly not after three or five years.”
She said clinicians had been talking about Seed in the context of “desperately underfunded” services and thinking “we need to ration the service and focus on people with potentially good outcomes”.
“But this would not be acceptable for any other illness such as cancer or diabetes,” Ayton said. “If you have someone with more severe complications of diabetes, the healthcare system would not withdraw care but rather intensify it.”
The parliamentary and health service ombudsman for England said last month that urgent action was needed to prevent people dying from eating disorders, and that those affected were being “repeatedly failed”.
Rob Behrens said the NHS needed a “complete culture change” in how it approached the condition, and ministers must make it a key priority. Little progress had been made since the publication of a report by his office in 2017 that highlighted “serious failings” in eating disorder services, he said.
The campaigner and author Hope Virgo said that in the past year she had been hearing from people daily who said their care had been “withdrawn because they are not working hard enough”.
She said: “People being left in limbo, left to suffer or left to function. We wouldn’t accept this for physical illness, so why is there not outcry that this has happened for eating disorders.”
One patient said they had been told they had “one more chance to recover” and been put on a six-week therapy course. They said: “When I argued for why this was unachievable, I was ignored and have been put down as not wanting to recover.”
Daiva Barzdaitiene, a psychiatrist, recently prompted controversy when she published a letter saying treatment for eating disorders should be “voluntary in most cases”. She said if the disorder endured for longer than five years, “only people who ask for help should be treated in eating disorders services”.
Ayton said such extreme beliefs were rare but emerging, and did not take into the consideration the effect malnutrition can have on the brain and someone’s ability to function rationally.
“This rationale ignores the harm of malnutrition as when you are severely malnourished your insight is impaired,” she said.
Ayton said there was a lot of pressure on trusts to discharge patients who were not engaging as it affected their performance indicators. “There is a pressure and we should be learning from diabetic colleagues who accept that some people need lifelong support rather than pressure to discharge.”
An NHS spokesperson said: “While the pandemic has taken a huge toll on many people’s mental health, improving care for people with an eating disorder is vital, with the NHS treating 55% more young people for eating disorders compared to pre-pandemic, as well as rolling out a rapid early intervention eating disorder service for people aged 16-25.
“Next year, the NHS is investing around £1bn into adult community mental health services, which will expand and improve these services and will help join up with local GPs to help more people get the care they need.”
