Patients are being excluded from life-saving eating disorder treatment as services are severely underfunded, experts have warned.
Adult eating disorder services are so severely underfunded and understaffed that they are having to employ rationing measures and turn away patients, leading psychiatrist Dr Agnes Ayton told The Independent.
In their research, Dr Ayton and 22 other psychiatrists found that in 2019-20, just 31 per cent of eating disorder services accepted all patients, regardless of the level of illness.
The researchers warned that the situation had become more serious following the pandemic, which had driven a “worsening of the demand and capacity” crisis across the services.
Experts have called for emergency funding to meet the needs of adult patients with eating disorders, and say that these services should be receiving at least £7m per million population each year to meet standards.
Dr Ayton warned that patients who are “literally on death’s door” are not getting care when they need it.
In an interview with The Independent, she said: “A lot of services are actually excluding patients. The services are so underfunded that they have to have some sort of rationing measure, which could be based on body mass index.”
Under current standards, eating disorder services should not refuse to accept a patient on the basis of their body mass index.
Dr Ayton added that since the beginning of the pandemic, there had been a surge in need alongside a reduction in capacity across teams. She said: “What we have also shown with this paper is that services are offering substandard care. People feel they can’t meet some of the basic standards around managing risk safely.” She added that there was a risk that patients would deteriorate and “end up in a life-threatening situation in an acute hospital”.
According to the findings, just 54 per cent of services were able to offer treatment that met national standards, while 94 per cent had a waiting list, and just 34 per cent reported that they had received a funding increase since 2014-15.
Tom Quinn, director of external affairs for charity Beat, said: “It’s deeply concerning that adult community eating disorder services in England and Scotland are not getting the staffing or funding that they need, and this research must serve as a wake-up call for action.
“These findings highlight the lack of support for adults with eating disorders and the urgent need for investment, but given when this research was conducted we know that the situation is almost certainly worse than [has been] highlighted.”
According to Beat, despite the guidance, patients are still being turned away from services on the basis of their BMI or the severity of their illness.
‘I was fearing for my own life’
Joss Walden, 31, was diagnosed at 15 with anorexia. She was quickly referred to children’s mental health services and went through several inpatient admissions. However, when she was 18 she began to experience difficulties in accessing care, and “slipped through the gaps”.
She says: “Suddenly, the whole approach changed, and it was like, just go to your GP once a week and be weighed. I was so unwell, and began fearing for my own life. I started ringing inpatient hospitals in London, saying ‘I really need some help, I need some intensive help.’”
However, when she made contact with these services she was told that her BMI wasn’t low enough. During this time, her mental health deteriorated. “I felt too anxious, too afraid. I didn’t have a team with me. It just felt so overwhelming. I was having a lot of panic attacks and things.”
When she finally got a referral to a community outpatient clinic, she was at her lowest weight ever and was given high doses of antipsychotics. “I felt like, had I been seen quicker, I wouldn’t have gotten to that critical stage. And I wouldn’t have needed the tube feed,” she says.
Since recovering, Joss is now working within the NHS and runs a support podcast for those managing eating disorders.
The NHS currently monitors waiting times and performance for child community eating disorder services, but does not have the same monitoring in place for adult services.
Dr Ayton said that for adult services, patients could be waiting two years following a referral.
Eating disorders have one of the highest mortality rates compared with other severe mental illnesses. In 2017, following the death of a young woman called Avril Hart, the parliamentary ombudsman published a report titled “Ignoring the alarms”, which called for the improvement of adult eating disorder services and parity between child and adult services.
Sean Horstead, a senior coroner in Cambridge, warned of “systemic errors” in 2020 following inquests into the deaths of five young women with eating disorders, including Ms Hart.
As a result of the inquests, Mr Horstead wrote to NHS England and the Department of Health and Social Care about the lack of provision.
However, Dr Ayton warned that services still have not achieved parity, and that they “cannot wait another five years”.
NHS England was approached for comment.
For anyone struggling with the issues raised in this article, eating disorder charity Beat’s helpline is available 365 days a year on 0808 801 0677. NCFED offers information, resources and counselling for those suffering from eating disorders, as well as their support networks. Visit eating-disorders.org.uk or call 0845 838 2040.
