Monday 21 January 2019

NHS have washed their hands of the matter

10 years ago this coming autumn I was cramming up on eating disorders and evidence-based treatment in order to fight for my 15-year old son to get successful treatment for his escalating anorexia. I quickly realised that the NHS wasn't going to rush this thing through despite the fact that I was rapidly learning how deadly an eating disorder can be, especially if left untreated for a lengthy period. It was only when, in the early spring that followed, my son's pulse plummeted to 29bpm and he was rushed into hospital, that NHS mental health services finally agreed to see him for eating disorder treatment. In other words, it appeared that his life had to be at risk for anything to be done.

Over the last months I've been trying to get NHS treatment for Complex (or Chronic) Post-Traumatic Stress Disorder (C-PTSD) which developed as a result of the horrifying years spent fighting for and caring for my son and his anorexia. I have also been cramming up on C-PTSD and evidence-based treatment, just as I did for my son's anorexia.

As I've described elsewhere on this blog, I've received all manner of different treatments since I developed C-PTSD a few years ago, both NHS and private, none of which was wholly successful and the more I delved into C-PTSD the more I realised that certain elements of the treatment I'd received were never going to work for C-PTSD (which requires different and more extensive and prolonged treatment than its 'cousin' Post-Traumatic Stress Disorder (PTSD). Therapies, like CBT (Cognitive behavioural therapy) and EMDR (Eye movement desensitization and reprocessing), helped to some extent; both have been proven to be successful elements of the intricate mix of therapies that are being shown to work with C-PTSD. But they are not the whole picture. Not by any means.

So last year, following a really cr@ppy winter when I scarcely left the house and even found it difficult to get out of bed, I went back to my GP who agreed to refer me back to NHS secondary mental health services. After a long wait, I received two lengthy assessments in December. The therapists said they didn't 'have a magic wand' and it was 'up to me' to deal with this although they did say they'd arrange for some occupational therapy to ease me back into 'the real world' that I'd been AWOL from for the last 10 years, although personally I felt strongly that I hadn't yet reached that stage and I said so.

Then last week they called me and said this request had been turned down by 'the powers that be' and there was nothing more they could do for me. In other words, I was out on a limb. It was tough luck. It was as if I hadn't recovered fast enough using their therapies last time round. They said they were really sorry but these days one has to be a 'risk to oneself' to be considered for therapy.

Hmn... sounds a tad similar to what I was hearing 10 years ago...

Of course it didn't surprise me. I take all the political propaganda which the government keeps churning out of  'more and more investment in NHS mental health' with a massive pinch of salt.

After 10 years of cynicism as far as NHS mental health services go, I would have been surprised if (a) I was offered further help, (b) I was offered a sufficient number of sessions, and (c) that this help was evidence-based for C-PTSD. And the more I read about research into C-PTSD the more I realised just how intricate and multi-faceted C-PTSD treatment needs to be for it to stand any chance of working in the long-term.

So I am currently reading textbooks aimed at therapists - the latest global research into C-PTSD as I increasingly realise that the only person who is going to fix this thing is me. An alternative would be to use a private therapist via SKYPE, perhaps based in the States which has always been a little more clued up on trauma treatment than the UK (similar to eating disorders!) So far I haven't found a UK therapist who can help.

What is so crazy, though, is that my condition isn't unusual. Whether it's childhood abuse, military combat or prolonged exposure to traumatic events (as with people like us, parents of children with eating disorders) there must be billions of people who suffer with C-PTSD. And yet so little has been done to research into treatment that works in the long-term, relying all too often on PTSD treatment which is the tip of the iceberg when it comes to C-PTSD.

Not only this but the sheer amount of money, both private and NHS, that's being wasted on ineffective treatment is astonishing.

But of course I'm well used to that, with my history of battling for evidence-based treatment for my son's eating disorder.

Does it surprise me?

Does it hell.

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