Monday, 30 October 2017

Why are some eating disorder treatment teams still using outdated treatment models?

I feel a mixture of anger, sadness and fear when, in the modern world, in 2017, I hear about advice that's being given to parents of young people with eating disorders that's so very out of date. Advice like we received eight years ago along the lines of 'Don't keep going on about food, it makes him/her anxious... it's not helpful to him/her'. Worse, for food to be pretty much taken off the agenda except for playing a small 'bit part' role in the background. Or, as we were told just before the Summer of Horror in 2010, to 'take a break from the eating disorder' for the duration of our two-week family vacation. Can you believe that?

For some time now, evidence-based treatment for anorexia in adolescents has focused first and foremost on eating and food. Until the child is nutritionally stable, food takes centre stage. You can read more about how FBT (Family Based Treatment of Anorexia Nervosa, also known as the Maudsley Approach) works here.

I firmly believe that it was the instruction NOT to 'go on about food all the time' that helped my son's weight to drop consistently once 'Mum's eating plan' had been dumped during those first few weeks at CAMHS when my son gained weight.

As I have said before on this blog, my son was exactly the same weight on discharge as he was on admission.

That, in my opinion, doesn't constitute recovery from anorexia.

Of course FBT doesn't work for everyone. Eating disorders are so very complex that you can't depend on a blanket 'one size fits all' approach. But evidence has shown that for many adolescents the FBT / Maudsley approach works for anorexia. Which is why more and more enlightened eating disorder treatment professionals are being re-trained in FBT. The more traditional 'they have to WANT to recover before anything can happen' and 'it's not about food' approaches have gone out of the window.

Worse, the approaches that point the finger at parents as being the root cause of the eating disorder or 'passing their anxieties onto their son/daughter'.

So I feel so very, very sad for parents who are new to the horrendous world of eating disorders, firstly because they're having to go through this hell and, secondly, when it becomes clear that their treatment team appear to be following more traditional, outdated treatment models.

As a parent your gut instinct is that you want your child to eat first and foremost. You want them to put on weight. Especially when, as was our case when my son was admitted to hospital with Bradycardia (abnormally slow pulse rate), dangerous physical symptoms start to appear. As I remember saying back then: "This is my only child and he only has one heart."

So when you're finally sitting in front of the eating disorder treatment team you automatically assume that what they are proposing to do is right and completely up to date with modern evidence and research. Just as you would if you were sitting in front of an Oncologist or any other medical expert.

It can be so confusing and indeed terrifying when the treatment appears to be going against your instinct and also against what you are reading about treatment models like FBT. With me I felt absolute panic plus, as time went on, the gradual realisation that this treatment wasn't going to help my son. The only thing it DID do was to make him get on with his psychiatrist like a house on fire as sides were taken against 'mum who's always going on about food'.

I'm sure there is a ton more that can be said on this subject, but I'll stop here for now.

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