Their manifestation may be physical, but eating disorders are serious mental health problems. Anorexia has the highest mortality rate of any psychiatric disorder, which includes deaths by suicide, and with 1.25 million people believed to be suffering with an ED in the UK, the need for proper diagnosis and treatment has never been more important.
Yet there's a serious problem with the way some clinicians and clinics are responding to the patients seeking their help – by focusing disproportionately on their weight and BMI rather than their mental health. ED sufferers in the UK are being told they "aren't thin enough" to receive treatment, which, for people already struggling with food and body image, is triggering at the very least.
This happened to 29-year-old Hope Virgo. Now Virgo, an author and mental health campaigner from London, is calling on the government to review the ED guidance delivered by clinicians and to introduce training so that GPs and healthcare workers have a proper understanding about how EDs are diagnosed, so that no patient is turned away because of their weight or BMI.
Her campaign and petition – #DumpTheScales, 'Eating Disorders are not just about weight' – has amassed more than 70,000 supporters at the time of writing, and has elicited a supportive response from the government, though little in the way of concrete action. Virgo referred herself for medical treatment in 2016 after four months of daily battles with a "relentless anorexic voice", only to be told during an appointment at a London eating disorder unit that she "wasn’t thin enough for support," she writes on Change.org.
I left the appointment not sure what to do, all I had wanted was someone to talk to, someone to take my relapse seriously and to give me some help.
Hope Virgo, 29
"I left the appointment not sure what to do, all I had wanted was someone to talk to, someone to take my relapse seriously and to give me some help. I felt like a fake. A hypocrite."
Virgo tells Refinery29 that despite being asked about her history of anorexia during the appointment – she'd been "on the brink of death" once before – the lack of care shown by her clinician left her feeling "suicidal and not sure what to do". Virgo describes the experience as incredibly triggering and detrimental to her mental health. "Anorexia is a very competitive illness and as soon as someone gets told [they aren't thin enough] they start to think they have to prove something."
Under current guidelines from the National Institute for Health and Care Excellence (NICE), an eating disorder diagnosis shouldn't be based solely on weight or BMI, but should also take into account factors including other mental health problems, social withdrawal (particularly from situations that involve food) and patients' concerns about their weight or shape.
I was told I wasn't small enough for treatment.
Sadhbh O'Sullivan, 26
However, several ED sufferers are sharing their experience of being told they "don't quite tick all the boxes" to receive treatment for their illness, suggesting the problem is pervasive in the healthcare system.
Refinery29's social media assistant, Sadhbh O'Sullivan, 26, had a similar experience after being diagnosed with anorexia in 2011 at 18, when she was weighed and told by the NHS that her "BMI wasn't within the threshold and they could do nothing to help me".
"The most outrageous part to me now I have recovered is that I was told I wasn't small enough for treatment. Even at my lowest I never 'looked anorexic', something I used to my advantage. It made it easier to hide and because of the fucked fatphobic world we live in, I was often complimented for looking good as I got smaller and smaller. But at that moment I was asking for help. And in that moment I was told I couldn't be helped because I'd failed to hit a target I didn't even know I had to hit," she recalls.
O'Sullivan was lucky enough to be able to access private healthcare through her mother's health insurance, which was how she eventually received treatment from a psychiatrist and a nutritionist once a fortnight. She acknowledges, however: "If that had been my only lifeline I don't know if I would have ever recovered."
#DumpTheScales has escalated in recent days with a response from the MP Jackie Doyle-Price, parliamentary under-secretary for the Department of Health and Social Care. "I am incredibly supportive of your campaign and the work you are doing to raise awareness," she wrote in a letter to Virgo on 10th May, but she made no mention of how Virgo's specific concerns will be addressed in the NHS.
"It is just more talk of developing pathways, strategies ... with all talk and NO action! We need to make sure that the government really begins to see this as an issue and begins to prioritise this!" says Virgo.
Beat supports the Dump the Scales campaign, says Tom Quinn, director of external affairs for the eating disorder charity. "Eating disorders are mental, not physical illnesses, and so the decision to refer or accept someone for treatment has to take into account their mental state," he says, but acknowledges that, as it stands, "BMI is the only tool that GPs have to determine whether someone is under or over weight. We would not advocate ignoring it completely, but it should only be one part of an approach that considers a patient’s whole health."
Some NHS commissioners and NHS Trusts, Quinn says, "have set BMI thresholds which limit the number of people who can access treatment and mean that many are unfairly turned away". It's clear that the NHS and the government must do more to ensure that these services can offer treatment to everyone who needs help.
“More people than ever before are receiving treatment for eating disorders quickly and closer to home, with NHS England investing an extra £30 million every year and as part of [our] long term plan," a spokesperson for NHS England told us. The NHS is firmly on track to meet ambitious targets to treat children and young people, with 70 community treatment teams covering the whole of the country.”
If you are struggling with an eating disorder, please call Beat on 0808 801 0677. Support and information is available 365 days a year.