Thursday 9 May 2013

Okay, maybe I should clarify things a little

I recognise that I wasn't clear as to exactly why I was jealous and angry in this post - or, rather, which camp I felt Ben belonged to: the former or the latter. Great treatment and outcome versus not-so-great treatment and not-so-great outcome.

I think we lie somewhere in the middle, and here's why...

At GP level, the service was very poor. Our GP seemed to know little about eating disorders, didn't latch onto the fact that Ben had an eating disorder and it took me a month to get him referred for treatment.

At the next level, the service was appalling. Approximately one month on from the referral I received a confirmation letter from CAMHS. On phoning I was told that we could have an 18-22 week wait before Ben was seen by them - and that would only be an assessment to work out what kind of treatment they felt he needed. Meanwhile, as you may have read in my book Please eat... Ben was metaphorically falling off a cliff.

At non-mental healthcare level, the service was poor. Ben was in hospital twice with Bradycardia (pulse rate 29) yet on neither occasion did the professionals make the link between low pulse rate and anorexia, despite the fact that I explained that Ben had anorexia. We were told that athletes' hearts tend to be so fine-tuned that they often beat slowly and, because Ben was sporty, this was probably the reason "in the absence of any other reason". Yes you could say that Ben was "sporty" - the eating disorder meant he was compelled to exercise round the clock. There seemed to be zero awareness of eating disorders or dietary needs while in hospital. You can read about the first hospital admission here: the first 6 chapters of Please eat

At CAMHS level, the service was... mixed and confusing. Initially the focus seemed to be on the "talking treatment" and delving into the "reasons why" Ben became ill. Meanwhile I persevered with a meal plan which I had to tweak because Ben refused to eat most of the stuff on it. I received little support in administering this plan and when Ben refused to cooperate any longer, he was given back control of his eating. Before long he was preparing every meal except the evening meal main course. Over the following 12 months his weight (and everything else) headed south as CAMHS tried to "prove" to Ben that his methods weren't working and were resulting in lost weight, not weight gain. Meanwhile I felt as if I was fighting the system and fighting Ben's deteriorating mood as he went into a suicidal phase and his behaviours went extreme. It was what I now refer to as The Summer From Hell.

However later on in our treatment, from the October onwards probably, I began to get along better with CAMHS and became recognised as an important part of the team which was going to get Ben through this illness. They supported me when I introduced our Recovery Contract, for example, which resulted in Ben's weight going up steadily again and improvements on all fronts.

On the downside, Ben was discharged once he reached 18. Our psychiatrist was also leaving. His weight was the same as when he'd first started treatment, but his mood had improved immeasurably.

At post CAMHS level, the service was virtually non-existent. Ben's weight wasn't low enough to qualify for Adult Services. We were offered a transition worker who would see Ben a few times to attempt to help him in the transition to university, but Ben didn't get on with her at all. So, instead, it was just him and me working together using our Contract and bringing in the occasional private therapist to help tie up the loose ends. Things have moved slowly forwards, as described at the end of Please eat and they are still moving slowly forwards. I'd say that, over the last six months or so, Ben has gone from 99 per cent recovered to 99.5 per cent recovered. He is currently seeing a private CBT therapist to sort out his social anxiety - a legacy of the eating disorder - to help make his second attempt at university more successful than the first one.

But the Good News is that he is still seeing her and he is still pushing himself to overcome the last remaining glitches.

Having written about other families' experiences for my new book When Anorexia Came To Visit, there are a few instances where families have had a good, coordinated experience from GP through to recovery. There is one account in particular where everything worked like a well-oiled machine to drive the child towards recovery and also support the parents.

There are other accounts of clinicians who have been amazing. One bit in particular made me smile: "I dread to think what the outcome might have been if we hadn’t had someone as formidable as XXXX on the team. She was great. Mind you, my daughter hated her with a passion. She was very, very strict and you couldn’t pull the wool over her eyes. She didn’t care whether you hated her or not. She said she wasn’t there to be liked; she was there to get my daughter well. She was absolutely brilliant."

I feel a little jealous and angry because I wish we'd encountered similar support at every level of the process.

Hopefully this book will help to change the tide.


  1. I am grateful to have found your blog. This is the first time i have ever joined a blog so i am a little rickety... but i appreciate knowing i am not alone in my sense of helplessness. my son is 25 and has been rapidly losing weight over the last 6 months. he is avoiding me, which is very sad, i think because i was the first to talk with him about the weight loss and his denial was pretty strong. i convinced him to see his doctor, who i have no faith in for a variety of reasons based on past experience. but at least we have test results. all point to malnutrition. i am grateful for the window of opportunity i had to convince my son to go to the doctor, and then to share the results. but that's been it. he wants to fix this himself. he is an adult so i have so sway, or say. and i am scared to death for him. i am doing all i can to educate myself and seek out resources and people who work with this specialty but i don't know how to get my son to connect. i am lost. any advice would be so greatly appreciated.

  2. Hi Jmee, Thank you for your comment. I am so sorry to hear about your son. Have you read my book "Please eat" which describes our own story in detail? You might find something helpful in that as it shows how I worked with Ben to get him through the eating disorder after months of deterioration. Here's a link: If you're outside the UK, it is also available at xx