Postcode lottery of adult eating disorder services putting lives at risk

Posted 18/06/2019

A new report published today shows that adults with eating disorders in some parts of England have to wait, on average, more than ten times longer for treatment than in other areas and face a postcode lottery in the likelihood of a referral, which the eating disorder charity Beat warns puts patients’ lives at risk.

According to the report, waiting times at one eating disorder service averaged at five and a half months, while another service had average waiting times of two weeks. Nationally, almost one in five adults have to wait for more than four months to begin treatment, at a time when they may be feeling suicidal or at severe risk of their illness worsening.

The long waiting times and uncertainty means patients are making themselves more ill in order to access treatment faster. Henrietta said she felt “I should be trying to be as ill as possible so […] they would see that there was a problem and take it seriously.” Alice said “I really did think that the only way I would be seen, would be if I lost more weight.”

This directly impacted patients’ chances of recovery. Naomi said “You’re just like, ‘Well, what’s the point?’ … which is totally wrong, because the further you are into something the harder it is to get out of it.

This uncertainty and variation in access to treatment left sufferers “in limbo”, as several patients described it, leading to them doubting whether they even deserved treatment. Henrietta said “I was very concerned that when it came to the assessment that I would then be rejected and didn’t really know […] it was just a big period of uncertainty […] that perpetuated the cycle of guilt, restriction, anxiety.” Kim said “I needed the support, but I needed to prove that I needed the support… I had to be deserving of my place on the waiting list.”

The report also showed that the availability of treatment varied drastically between services. Some services offered treatment to up to 80 people per 100,000 population, while others accepted between twelve to fifteen for the same population size.

Although staffing levels are similar among the majority of services, the service with the highest staffing levels had nine times as many staff per 100,000 population as the service with the lowest. This disparity also applied to the number of staff available to each accepted patient, again with a ninefold difference between the services with most and least staff.

Without access to specialist staff, many patients have to rely on GPs or nurses who are not trained to deal with eating disorders. This can pose risks to patient safety. Isabel said “I was meant to have monthly like check-ups at the doctor’s. They did it once and refused to do it again.” In the most extreme cases, this led to a direct risk to life. Alice explained, “So that’s why I then became suicidal, because I just could not see how things were going to change if I didn’t get treatment.”

Beat’s report comes on the same day as a Parliamentary select committee report warns of avoidable deaths from eating disorders as a result of failings in adult disorder services.

Beat’s Chief Executive Andrew Radford said, “This 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.

Adults with eating disorders are being discriminated against because of their age. The Government have improved services for children and young people through waiting times targets and extra funding, but adults are being left behind. 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.

There must also be investment to ensure that services have the resources to provide specialist treatment as soon as possible for adults. 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.

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