Sunday, 11 December 2016

The letter I'd love to send to Ben's CAMHS psychiatrist but of course never will

Dear Ben's Psychiatrist,

First let me say that the bouquet of flowers we gave you on our final visit in 2012 really was to say thank you - genuine thanks for being such a nice person, for going 'over and beyond the call' when it came to CAMHS sessions running overtime and for truly empathising with my son. As the months went on, any professional disinterest evaporated. I believe you really cared for my son. I know you liked him. And I hope I'm right in saying that, throughout those final months of CAMHS treatment for my son's eating disorder, you treated me as an important and valued part of the treatment team. You listened to what I was saying, especially after we introduced our 'contract' and you saw it was working.

It's because you are such a nice person that I find it difficult to be critical of those first months at CAMHS - those 8 or 9 months up until my son ended up back in hospital with the heart issue. I am also aware that as a CAMHS psychiatrist you were multi-disciplinary; you didn't just deal with eating disorders and you probably had little if any experience of dealing with boys with anorexia. I am also aware that we're talking about the years before our city rolled out FBT (Family Based Treatment) for eating disorders which, from the evidence, appears to suggest a better outcome for young people with eating disorders. Back then, our CAMHS didn't offer the Maudsley Approach / FBT.

During those first few months with CAMHS it took a while for you to 'get it' - to realise that my son's eating disorder was very serious. It also took a while for you to realise that my son was play-acting, pretending to be relatively OK while convincing you that his mum was being over-anxious and over-reacting. Remember when you suggested that we might only need to see you fortnightly? If only you knew what that did to my panic levels!! Aaarrrggghhh!

During those first months, the boy that you were seeing wasn't the same as the boy outside the CAMHS sessions. He was a great actor! You should have seen him when we left CAMHS. He'd punish me all the way back and at home, especially if he'd put on weight. Why did you ever let him know what the scales were saying? Why didn't you weigh him 'blind'? Maybe we'd have had fewer fire-fighting sessions...

Also during those first months, I felt that you weren't taking me seriously, that you saw me as over-anxious and unhelpful. I'd actually challenge any parent not to be anxious when faced with a potentially deadly illness in their child. Yes, I was panicking and perhaps trying to get too much accomplished too fast. But what I really needed to see was a Plan: an A-Z Treatment Model that made sense to me. Throughout my son's treatment I never really felt that there was a Plan as such. More a case of reacting to his current moods and weight, and pacifying the eating disorder.

I wanted you to get him to eat. My research had shown that 'food is medicine' and that getting a proper, balanced diet into my son was vital leading to weight gain. But I needed help in doing this. I couldn't get him to eat. Mealtimes were a nightmare. He was stronger than me and he could be violent. I needed hands-on support with an eating plan and in our home at mealtimes. Yes my son found re-feeding "unbearable and unsustainable", but I'd argue this is the case for everyone with anorexia until they begin to engage with the weight restoration programme. Instead, I felt that I was 'Big Bad Mum', perpetrator of 'Mum's Eating Plan', while CAMHS were telling my son that it was OK to give it up because his weight wasn't too bad. During these early days at CAMHS there was an awful lot of triangulation and, to be truthful, I felt as if it was CAMHS and the eating disorder (in my son) against me: Big Bad Over-Anxious, Panicking, Food Wielding Mum.

I know that much of The System that was CAMHS and the NHS was out of your hands. Things like making it difficult for parents to contact therapists and then making it even MORE difficult. Also, when the dietetic service was withdrawn. Plus the criteria for official diagnosis of anorexia nervosa which may have led to my son's weight loss not being taken as seriously as I believe it should have been.

On a more positive note, I also believe that round about September / October of 2010 you and I began to land on a similar page. First there was that meeting I had with you where I went through point after point that was troubling me - the first time I truly felt that I was getting through to you and that we were beginning to see eye to eye. I believe this meeting was something of a watershed.

Very shortly after this came Ben's (second) admission to hospital with the slow pulse rate. At the CAMHS session that followed I really felt that - for the first time - you were coming down on the anorexia like a ton of bricks. Ben needed to engage in recovery or he could be sectioned. The relief I felt was massive. For the first time for ages I felt safe. I felt that you 'got it' and would do whatever it took to get my son through this nightmare.

However I know that treating someone for an eating disorder is never going to be linear. I also know that it must be incredibly stressful and difficult for the therapist. If only it was a case of being able to pop a few pills and - bingo! - the patient is on the road to recovery.

But I do believe that, during those final months at CAMHS, the treatment was more effective because we were working as a team rather than triangulating. I am so grateful that you were happy for us to try out the 'contract' from Easter 2011 onwards and that you worked with me to keep Ben on the straight and narrow.


Ben trusted you. He liked you. He felt motivated to engage with you as we pushed towards recovery. You know what I wish? I wish you'd pushed for full weight restoration based on Ben's pre-eating disorder weight. Ben always insisted that he was 'fat' before the eating disorder (how he used to go on about that, hey!!). Yes he'd had puppy fat at primary school, but for the 3 or 4 years before the eating disorder he'd been a normal strapping teenager. He wasn't fat at all. It was all muscle. So there was no reason on this planet why we shouldn't have worked to get his weight back up there.

But I know there were also other reasons why Ben's treatment ceased when it did. He'd reached the age of 18 and therefore no longer qualified for CAMHS treatment. He said no to the idea of adult services treatment; you are the only therapist he has ever trusted. He wouldn't engage with anyone else. You were also taking a sabbatical from CAMHS at that point. And so Ben was discharged at a low weight and with many eating disordered thoughts still going round his head.

I only wish we'd had longer at CAMHS and that you could have seen the treatment through to full weight restoration and brain healing. Especially now that our local NHS is adopting the FBT model. Knowing what we all know now, I truly think that we could have moved mountain.

You had unique leverage when it came to getting my son well.

I truly regret that circumstances prevented us from completing the exercise. Working alone with Ben, without your support, was very difficult during the post-CAMHS months. Ben and I did it in the end, but one of the things we never managed to do was to get Ben's weight back to what it was before the eating disorder. Sure, he's OK, he's healthy, he eats well and all that. But the fact that he never got properly weight restored constantly worries me because there is little room for manoeuvre should anything happen to make him lose a lot of weight very quickly. And he still fears 'getting fat again' despite the fact that we're talking about the puppy fat of pre-pubescent years and not the years in the run up to the eating disorder.

Ben listened to you. He respected you. He liked you. I believe you could have got him properly weight restored. We both miss you!

Lots of love and good wishes, Ben's Mum

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