When Henrietta was diagnosed with an eating disorder, the six-month wait for treatment made her feel like she should make herself even more ill, so doctors would take her illness seriously.
Her story is not unique: in some parts of England, adults with eating disorders are waiting on average 10 times longer for treatment than those in other areas – and according to eating disorder charity Beat, it’s putting patients’ lives at risk.
A new report by Beat finds that in 2017-18, waiting times at one eating disorder service averaged at five and a half months, while at another service it was just two weeks. Nationally, almost one in five adults had to wait more than four months to begin treatment, at a time when they may have been at severe risk of their illness worsening.
This uncertainty and variation in access to treatment leaves sufferers “in limbo”, “It was just a big period of uncertainty […] that perpetuated the cycle of guilt, restriction, and anxiety,” said Henrietta, interviewed for the report.
The Beat report is published on the same day as a Parliamentary select committee report warns that failings in adult eating disorder services are resulting in avoidable deaths.
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Alice, an eating disorder patient who waited seven months before starting treatment, echoed Henrietta’s experience: “I really did think that the only way I would be seen would be if I lost more weight,” she said.
The findings are based on Freedom of Information (FOI) requests to all known providers of adult community eating disorder services, plus a series of eight in-depth interviews focusing on the impacts of long waiting times.
Availability of treatment also varies drastically, the report shows, with the data showing some services offered treatment to up to 80 people per 100,000 population in 2017-18, while others accepted between 12 to 15 for the same population size.
Staffing varies, too. The service with the highest levels of staff had nine times as many staff per 100,000 population as the service with the lowest. Without access to specialist staff, many patients have to rely on GPs or nurses who are not trained to deal with eating disorders, which Beat warns can pose risks to patient safety.
Beat has called for a standard treatment waiting time of four weeks in non-urgent cases and one week in urgent cases.
Beat’s chief executive, Andrew Radford, said the research should “set alarm bells ringing” in the government and NHS. “Eating disorders have among the highest mortality rates of any mental illness, yet people’s chances of recovery are being subjected to a lottery and lives are at risk,” Radford said.
Radford warned that adults with eating disorders are being “left behind”, because the government has improved services for children and young people, but not for those aged 18 and over.
“They have committed to testing waiting times targets for adults, and it is vital that these targets are introduced as soon as possible, so that no one is denied treatment when they need help,” he said. “Investment now will prevent people becoming more ill, saving lives and saving the NHS money.”
Dr Karina Allen, senior clinical psychologist at the South London and Maudsley NHS Foundation Trust, said: “This report highlights the varied and serious negative consequences of current inequalities and delays in access to specialist adult eating disorder care.
“There is an urgent need to change how care is provided so that everyone with an eating disorder can access the help they need. Beat sets out timely recommendations to facilitate this essential progress.”
Useful websites and helplines:
- Beat, Adult Helpline: 0808 801 0677 and Youthline: 0808 801 0711 or email help@beateatingdisorders.org.uk (adults) fyp@beateatingdisorders.org.uk (youth support)
Samaritans, open 24 hours a day, on 08457 90 90 90
Mind, open Monday to Friday, 9am-6pm on 0300 123 3393