Imagine living with an illness, turning up to your GP, and being told you are not sick enough for treatment, and to come back when you have hit a certain level of severity. Imagine then turning up to your local A&E or health care provider months later only to be told you had let yourself get too sick and they couldn’t do anything for you.
Imagine being discharged from the place you were getting treatment because the team that are supposed to be saving your life tell you that you are ‘too complex’, that you are ‘not motivated enough’. Imagine being discharged still struggling with no plan in place, and despite begging for something different, they give you no choice but discharge.
There are so many situations where if this happened, there would be a public outcry. But for those affected by eating disorders this isn’t a unique situation.
Unsafe discharge and non-evidence-based treatment are impacting people with eating disorders all over the UK daily. It’s one of many reasons why the All-Party Parliamentary Group (APPG) for eating disorders recently launched a new report calling on the Government to take action to provide evidence-based treatment to everyone with an eating disorder and to prevent more lives unnecessarily being lost to eating disorders.
People with eating disorders have faced decades of neglect, characterised by underfunding that has resulted in an under-resourced and often poorly trained workforce. This has resulted in substandard care and prolonged suffering for individuals affected by eating disorders, and has hindered crucial research.
The APPG hosted oral evidence sessions prior to the report release and called for written evidence to gain an accurate picture of what is going on in eating disorder services on the ground. The results have been harrowing and heartbreaking but also inspiring to hear stories of people who have fully recovered. The evidence sessions have shown an enormous postcode lottery of treatment, a high number of people being discharged with a dangerously low Body Max Index (BMI), and in many areas no treatment at all for those living with avoidant/restrictive food intake disorder (ARFID) and Binge Eating Disorder (BED). We also heard of many more who have other eating disorders who are crying out for support but being denied it for not fitting into a neat mould.
According to DSM-5 criteria, a BMI under 15 signifies extreme severity, while ICD-11 highlights that a BMI below 14 in anorexia nervosa is associated with being severely underweight, a high risk of physical complications, and substantially increased mortality. The Medical Emergency Eating Disorder Guidance (MEED) states that a BMI below 13 indicates a high impending risk to life.
We have known for decades that people with eating disorders are being told they are not thin enough for treatment, but over the last few years we have also seen increasing numbers of people being discharged for not responding to treatment, for not getting better quick enough or for being too complex. The APPG submitted Freedom of Information (FOI) requests to hospital trusts across the UK. Through this we found that people with eating disorders were being discharged with BMIs as low as 13, often justified by claims that individuals “did not want to get well”. We also found that many of the services that were discharging patients at low BMIs were run by teams that did not believe that full recovery from an eating disorder is possible. Regardless of an individual’s views on whether people can recover or not, we know that discharging patients at such low BMIs places them at grave risk, as evidenced by deaths from physical complications and suicide. These practices reflect a worrying pattern of neglect in some regions.
For too long eating disorders have been neglected across health services and in society. We need to keep campaigning for change. The APPG for eating disorders is calling for:
- The development of a national strategy for eating disorders
- Increased research funding for eating disorders
- Confidential inquiry into all eating disorder deaths (currently not all eating disorder deaths are investigated and often, families are left having to fight for an investigation. We need to look at all deaths and learn from things that went wrong so we can implement change)
- Additional funding for eating disorder services
- Non-Executive Director oversight in all NHS trusts for eating disorder services.
Hope Virgo is an author, founder of #DumptheScales and Secretariat for the APPG on Eating Disorders.
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