‘The NHS needs to stop telling people with eating disorders to lose weight if they want help’
When we think of someone with an eating disorder, we often have an image in our heads of a young, white, emaciated teenage girl. But would it surprise you to realise that in fact, that image is the minority, and that only 6 per cent of people with eating disorders are actually underweight? The problem with images like this is it stops people reaching out for support, but it also fuels stereotypes and misconceptions around eating disorders having one look.
Imagine if you broke your leg. You would make your way to A&E, you would get seen, X-rayed, they would examine the break, and then plaster it up. Pretty standard. But what if you turned up at the hospital, had an X-ray, only to be told to come back when the break was worse? This is the reality for someone with an eating disorder, who will often be told their BMI isn’t low enough to qualify for treatment.
Experts have now found that growing numbers of people in England are being denied support for eating disorders because they are not considered to be thin enough. A few weeks ago I met with The Department of Health and Social Care alongside Dr Agnes Ayton, chair of the Royal College of Psychiatrists eating disorders faculty. We discussed the fourfold increase in hospital admissions for eating disorders in the past year, and the barriers that people face when accessing services; the main one being that people with eating disorders cannot access support because of their BMI.
“Unfortunately, it is not uncommon that patients are excluded from chronically underfunded services based on their BMI,” explains Ayton. “This puts desperate patients in a life-threatening position to reduce more weight in order to meet the threshold to gain help.”
Although this is happening across the board of NHS treatment, it is not necessarily the fault of the NHS, and there are wider issues around funding, bed availability and frontline staff having to make some really difficult decisions over who gets support.
After being turned away from eating disorder services myself in 2016, I felt suicidal and let down. When you turn someone with an eating disorder away from services as a result of their BMI, the individual feels unheard, misunderstood, and will often be sitting with shame and guilt around their behaviour and even reaching out for support.
Eating disorders are not about BMI. They are not about weight or food. Yes in some cases, they might present in that manner, but there is so much more to them than that. I am one of the lucky ones: I have support around me, and money, which enabled me to pay for therapy, to get back on track with my own support network. But so many people do not have that. My experience led to my #DumpTheScales campaign, which is all about changing understanding about eating disorders, getting rid of that stigma that to have an eating disorder you have to be a certain size or weight.
Eating disorders have the highest mortality rate out of any psychiatric disorder, a fact we should not accept. It is a basic human right that eating disorder sufferers should be able to access treatment at the necessary time for early intervention. The fact people are turned away because of their BMI is costing lives. We know the importance of early intervention, so why are we still waiting for people to hit crisis point before treating them?
Over the last year with the pandemic, we have all faced a time of uncertainty and isolation to varying degrees. These are two things that an eating disorders thrive on. They use times like this to suck someone back in, telling them to calorie count, telling them to restrict. We have seen an increase in the number of people struggling with eating disorders, with referrals to services all over the country increasing on average by 75 per cent. And this doesn’t take in to account the number of people who are seeking help and it is not recorded, or the number of people who want to get support but are too embarrassed. And behind each and every one of these stats is never just one person struggling, but an entire family. It is an illness that storms through entire lives.
Will you step forward into recovery even if it feels scary? pic.twitter.com/beOLggdUPR
— Hope Virgo (@HopeVirgo) April 7, 2021
If we remain fixated on BMI then it will stop people reaching out for support. very day I get hundreds of messages from people who are trying to access support, but don’t fit neatly into a BMI box. I am at a loss at what to say to them. I can remind them they are valid, that they deserve support and share practical things that worked for me.
Eating disorders are preventable, and with early intervention, the right treatment, funding, pathways, education and support for the whole family they can and will be prevented. We cannot afford to wait another three or four years for these changes to be implemented. We are faced with an emergency and this needs to be escalated or we will lose more lives.
A Department of Health and Social Care (DHSC) spokesperson said: “We know how important it is that people with an eating disorder get the support they need, when they need it. The National Institute for Health and Care Excellence guidance is clear, people should not be rejected for treatment solely on the grounds of weight or BMI – and we expect commissioners and providers to follow this guidance.
“The Government is providing the largest funding increase in NHS history to expand and transform mental health services, with an additional £2.3 billion a year by 2023/24, and we are investing more each year in community eating disorder services for adults, children and young people. Early intervention is vital, which is why NHS England is launching early intervention services for young people with eating disorders which means they could begin treatment within two weeks.”
Hope Virgo is founder of the #DumpTheScales social media campaign
