'I had to lose weight for anorexia treatment'
Too many people with eating disorders feel they are being forced to lose weight so their BMI is low enough to qualify for treatment, the UK's biggest eating disorder charity, Beat, has told the Victoria Derbyshire programme. Here's one woman's story.
One day, when Jo was 11, she started to turn blue while waiting to go into a maths lesson. Doctors said she may not last the night unless she ate something.
"That was the last time I was ever in school. I was in hospital and all my family were hugging me, thinking I was going to die," she says.
Jo had been a "normal happy child", with some anxiety, but started to become unwell with anorexia after a holiday at the age of 11. She says there was no indication as to why it happened, she just started eating less.
She says she got community care with her local mental health service quite quickly, but it was not until her BMI had dropped below a certain point, six months later, that she was admitted for the care she believed she needed.
To be told your BMI isn't low enough to receive inpatient care - and have to be given days to live to be classed as ill enough - doesn't make sense, Jo says. "Why should I need to get as ill as that to need inpatient treatment?"
BMI is a calculation used by professionals to assess weight in adults - there is a slightly different method for assessing children and teens. NICE (National Institute for Health and Care Excellence), which writes the guidelines for treatment, says it does not specify a particular level and BMI should not be the sole basis for treatment.
Beat says its helpline is encountering a "really significant problem" of people being denied treatment when their BMI, or body mass index, is considered to be too high.
- More than 725,000 men and women in the UK are affected by eating disorders
- Anorexia, bulimia and binge-eating disorders are the main conditions
- But 40%-60% of cases don't fit into these categories
- Anorexia is associated with starvation, while bulimia involves binge-eating and self-induced vomiting
- Treatment may include counselling and medication
- Statistics show that the majority of people are able to recover
"It is heartbreaking to hear from people who are feeling that they are being told to go away and get sicker before they can qualify for treatment, and whilst we will only hear from those who are not able to access care, this is a consistently repeated problem, and is devastating for these people and their families," chief operating officer Lorna Garner said.
"We are aware that many people are diagnosed and able to access care based on consideration of the whole range of health needs that these complex illnesses present, but it should never be the case that people are denied access simply because the diagnostic criteria being applied is focused on the BMI rather than consideration of all their health factors."
Prof Chris Fairburn, whose research informs the government guidance on treating eating disorders, says BMI should be one of the factors considered by doctors, but other factors, such as moods, relationships and overall physical health, should also be taken into account.
"If weight is low that's serious, but you can have a serious eating disorder and your weight's normal, you can be suicidal, incredibly distressed, but your weight's normal," he said.
Jo says the focus on weight fuelled her eating disorder.
"Even when you're skeletal you still don't see that, you still wouldn't think you are, so if a doctor is telling you that your BMI is OK then to you, you've got a long way to go.
"It's feeding those thoughts the illness is telling you, setting you off on that awful spiral of going home, restricting your diet and losing weight until you become more poorly."
Jo says she got caught in a cycle of hospital admissions because her treatment was based on managing her weight rather than addressing the underlying mental health problem.
"The second I was discharged I couldn't cope at home and that support wasn't there any more and I ended up just being back and admitted to hospital again," she says.
"As a result, for six years I missed out on all the things that normal children experience, I didn't manage to do prom, didn't do GCSE exams, didn't go to birthday parties, school trips. Potentially if I hadn't had to wait so long for treatment who knows, maybe I would never have needed that long to get better."
Prof Fairburn says accounts of people being denied treatment because their BMI is not low enough are "appalling".
"It would be like someone who has high blood pressure being told they're not getting treated until it gets even higher. You're expecting someone to get worse before they're allowed to get treatment - it's the exact opposite of what the NHS should be doing," he said.
But he understands why some doctors may struggle to treat eating-disorder patients. He says GPs may not see many cases and it can be hard to get them to agree to initial treatment.
He agrees that early intervention is crucial. "Eating problems develop in teens. What we do know is the longer they have it the more secondary problems develop. If we nip it in the bud early, the problems are much more treatable, have much better outcomes."
Jo, 22, is now a mother and training to be a midwife.
"I luckily managed to meet my partner, started working, managed to recover to where I am today. Having the children there now is motivation to never let it take control again. I'm doing really well, better than ever thought I would," she says.
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