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Access denied: Eating Disorder treatments

Ilona Burton

empty plate 300 Access denied: Eating Disorder treatmentsSo, you’ve finally managed to force your anxieties aside for one moment. Here goes.

You’ve felt sick all day, beyond butterflies. You haven’t thought about anything else. You’ve doubted yourself, wanted to run and hide. But now you’re here, about to tell someone your biggest secret. You sit on your hands to stop the shaking, bite your lip, breathe.

It slips out. You’d planned every word so carefully, worrying manically over every if and but, and now, out it comes almost subconsciously and it keeps coming, probably accompanied by tears and shame and apologies. Have you said too much? Given too much away? Too late now.

People say – and I have been this told many times – that telling someone you need help is the hardest part. Wrong. The hardest part is the aftermath (which explains why so many people keep their eating disorder a secret for so long; too long).

I don’t want to sound too grim. If everyone had an understanding, well informed, pro-active GP (and they do exist), then support can be sourced and recovery can begin then and there. Depending on many factors, this could be in the form of a referral to inpatient care on a specialised unit, general hospital if physically unstable, or if the person is less ill then arrangements could be made for them to attend outpatient treatment or offered counselling. In an ideal world, this would all be straightforward and appropriate care would be readily available. Sadly, the reality is a far cry from all of this.

In the worst case scenario, that dreaded first admission will be met with immediate dismissal. “Oh, it’s just a phase” and “Well, I’m not going to lose any sleep over you” are two responses I have experienced personally after explaining myself to medical professionals – the latter was, believe it or not, a consultant psychiatrist.

Let’s look at that… For months or even years before this appointment, your eating disorder tells you not to tell anyone, that it’s between you and it, that you need to push harder, that you need to go to greater lengths, eat less, throw up more, double the dose of laxatives, add an extra hour to your exercise, stay awake, never stop. This is constant, relentless pressure. You are never working hard enough, never thin enough, never burning enough calories and when it comes to telling a doctor, it will tell you that you are not ill enough to warrant help or attention.

It hits you like a tonne of bricks when these thoughts are confirmed. To be told, effectively, that you don’t matter, you don’t deserve treatment or that you’re not close enough to death’s door to need help is devastating. It isn’t easy to build up the confidence to open up and then to hear those words – it sends you into a whirlwind of negativity beyond any you’ve experienced before. It’s all true. Suddenly, you have back-up, real evidence that yes, you are too fat, you do need to lose more and it’s absolutely fine to carry on risking your life through indulging in whatever dangerous behaviour you were engaging in before – because the doctor said so. It’s basically a green light to self-destruct.

I have had more of these setbacks than I like to admit. I hate to damn the NHS or those who work so hard within it, but the truth is that unfortunately, the education, knowledge and training is obviously inadequate. I am not alone in being passed off with no support, and that is just not acceptable.

It is easier, quicker and therefore less costly to recover from an eating disorder if it is caught and treated early. I see it like this: If you have had bulimia for ten years, the act of binging and purging is set in stone, a habit or even an addiction, as are the thoughts of guilt, greed and shame that feed into that. Recovering involves undoing all those thoughts, unlearning those behaviours and replacing that as a coping mechanism with something less damaging. It’s a long and complex procedure and can take years. If that was caught when the bulimic person first mentioned it to their GP, perhaps after six months or a year, although it is still serious and by no means easy to recover from, it is less engrained and is likely to have less of a grip over the person. Ignore the early signs and fail to offer treatment when it is requested, then expect problems further down the line. Much bigger problems.

The first time that I ever held my hands up and admitted that I had lost control, I told my family and my GP that I could not go on alone any longer. I was a mess. My GP then was the best I could ever ask for. He referred me to a specialised unit where I had an assessment with the consultant psychiatrist. She was great, saw that I needed help and said she would like to treat me as an inpatient at the EDU. This time, I had the support of my family and two medical professionals, but even then, I ran into brick walls. Funding. The PCT (Patient Care Trust) in my area wrote back to my GP, refusing to fund my treatment – simply because my BMI was 0.8 above their limit. It was still dangerously low and they didn’t even take into account the fact that I was making myself sick several times a day. I could have had a heart attack at any minute – but that wasn’t enough for them.

I could have seen this, as I had before, as confirmation that I wasn’t doing a good enough job of this whole eating disorder thing. I could have gone off and lost another 10lbs and another 10lbs and died in a heap. But this time, I had just enough fight left in me. I was sick of all the worried looks on peoples’ faces, I was racked with guilt and a small part of me was exhausted of everything that anorexia and bulimia was doing to me and everything around me.

I went to my GP in tears, called the hospital that now had a place for me on their waiting list but had to wait for funding, the consultant wrote to the PCT and I made countless phone calls. I was literally begging for help. I was also losing weight – just what they wanted.

Nobody should have to fight or get down on their knees and beg for help. Nobody should be told that they have to get worse before they can get better. Nobody should ever feel belittled, ashamed and humiliated as a result of having the courage to speak out.

Eating disorders are mental illnesses. The side effects and symptoms are physical. What I can’t understand is that no other illnesses are left to worsen before they are treated, melanomas are whipped out before they become malignant and broken bones supported in a cast to prevent further damage. Why should mental illnesses be any different?

This needs to be addressed and it needs to be addressed now. We wonder why we have increasing numbers of people, especially younger people with severe eating disorders. Part of the problem is that there is not enough in terms of early prevention, there are too many people slipping through nets, whose problems are left to fester and worsen because they are deemed not serious enough to be offered treatment. There’s no wonder people find it difficult to talk, because the fear of not being taken seriously is so real. It shouldn’t be that way.

We are being asked to stand up and speak out. Great. But please, someone needs to listen.

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  • amanda berry

    Luckily i have a good GP,the local cmht on the other hand are still stuck in the stone ages when it comes to treating or letting people access treatment for eating disorders.
    I think two main problems are: some GP’s know nothing about eating disorders thus dismissive of anyone who seems them who voices concerns.
    Second:There are so many people suffering from eating disorders that ED teams are,in a way,having to triage treatment in order to help those “worse off”,due to chronic understaffing and lack of funding.

  • http://twitter.com/nopointcounting Richard Robinson

    Thank you Thomas, you are an exemplar of public ignorance and illustrate the point of the article perfectly – well done!

  • thomasgoodey

    You are welcome! But I don’t understand which of my two statements you consider to be ignorant: (A) the improper eating behavior isn’t REALLY a “thing” separate from the person herself; and (B) public money for spending on any condition is limited. Which of these assertions is ignorant, wrong, stupid?

  • http://twitter.com/LouLouD LoopyLou

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