In March 2011, my son Ben had been with CAMHS (Child and Adolescent Mental Health Services) for 13 months. During this time his weight had fluctuated, but by Month Thirteen I was panicking because Ben's weight had DROPPED by several kg compared to his weight on Day One of CAMHS treatment just over a year before. Indeed in February 2011, 12 months into treatment, Ben's weight had reached its lowest-ever level since his eating disorder began.
I needed to sit down with CAMHS and have a serious talk about what we should do about it.
The only chance I got to talk with his therapists was to do this while Ben was present during the CAMHS sessions which was far, far, far from ideal, as you can imagine. After each session the team of two would disappear in a puff of smoke, rushing off somewhere else. We weren't permitted to phone or contact therapists direct and had to rely on admin staff to leave messages in their pigeon holes, hoping they'd call me back.
Frustrated and scared, in March 2011, I wrote a letter to the CAMHS nurse.
(I describe doing this on this blog post from March 2011)
I pointed out that over the past 13 months, Ben's weight had DROPPED. I quoted the NICE (National Institute for Clinical Excellence) guidelines which stated that outpatients with anorexia should expect an average of 0.5kg per week weight GAIN and that this clearly wasn't happening in Ben's case. Quite the reverse.
I also quoted what the experts recommend as a healthy BMI for a 17-year-old boy.
I pointed out how NICE said that outpatients normally need over 3,000 calories per day to achieve this. Again, this wasn't happening, especially as, for some time now, Ben had been in charge of his own breakfasts, any snacks and lunches. And when it came to the evening meal, he policed what I was cooking to make sure there were no nasties in the food - like fats of any kind and minimal carbs. So his nutritional intake was extremely unbalanced and very low in calories and fats.
I explained that 'We are swinging between weeks of gain / loss and, to compensate, Ben is juggling his exercising and calorie intake to suit, thus successfully managing to maintain his weight rather than increase it' and that 'He believes he is OK as he is'.
An expert I talked to said that he had 'never met a successfully recovered anorexic with a BMI of [Ben's BMI at the time], especially a former rugby player'.
I was very worried about Ben's exercise addiction, explaining that he was 'unable to curb his compulsive exercising successfully simply by "agreeing" to follow our guidelines; we need to make an "Exercise Contract" which should be monitored strictly: an agreement between the patient and care team that they will do only a safe, acceptable amount of exercise as stipulated in the contract. The contract may be revised at different points in the treatment, particularly in the case of weight loss or failure to restore or maintain weight within a healthy range'. I'd read about the concept of 'contracts' on the FEAST website and forum (for parents and carers of young people with eating disorders) which was proving successful in similar cases.
I talked about the way CAMHS sessions were wasted 'because we spend much of the session dealing with the emotional response to the scales: when his weight goes up, his mood goes down; when his weight goes down or maintains, he’s far happier, stating he will find it easier to increase food / decrease exercise the following week. When this leads to weight gain, the opposite happens. Therefore we will remain in a vicious cycle (AKA rut) if we don’t take action'.
I proposed a Plan whereby we focus on an average of 0.5kg weight gain per week, were stricter with Ben rather than colluding with the eating disorder, changing the way he was weighed - 'blind', rather than letting him know his weight and I also suggested implementing the 'Magic Plate' concept which was part of the emerging evidence-based Family Based Therapy (FBT), sometimes known as the 'Maudsley Method' because it originated at the Maudsley hospital in London. (FBT is now considered to be the most effective treatment model for many adolescents with anorexia.) I'd read up about FBT on the FEAST website and was aware of many successful outcomes using this model.
I said that the risk of NOT doing the above would be to keep Ben sick for a far longer period and potentially result in health problems like osteoporosis and more heart issues (he'd already been hospitalised twice for a dangerously low pulse rate).
The risk was also that colluding with the eating disorder would allow Ben to remain in an unnatural 'comfort' zone. Also, it was becoming increasingly clear that Ben actually WANTED to recover and was getting more and more frustrated at the way the iron grip of the eating disorder made this so punishingly difficult.
So what happened next?
Well, the Good News was that the CAMHS nurse and I did devise an 'exercise contract' for Ben and it actually began to work.
The rest of the points in my letter never did get implemented, though, like the 'Magic Plate' concept and 'blind weighing'.
However when the psychiatrist returned from holiday and saw that the exercise contract was working, we all (including Ben) agreed to broaden the 'contract' concept to include eating, 'fear foods' (as he referred to them), socialising, school attendance and so on.
You can find out more about our contract here along with the first of many blog posts as we began to roll it out. (You can download a PDF of my 2011 blog posts from my website so you can scroll through what happened during 2011.)
From Easter 2011, Ben's recovery began to move forward. It was punishingly slow and never linear, but he was going in the right direction.
And for the first time, I felt that CAMHS and me were working together as a team to truly encourage Ben towards recovery.
Ben was to be with CAMHS for a further 12 months following my letter, but his weight had risen from its lowest-ever point, primarily - I believe, and Ben believes too - thanks to the success of our contract.
Ben's weight on discharge, at the age of 18, was the same as on Day One of CAMHS treatment.
You might think that this wasn't a measure of success by any stretch of the imagination, but, using the contract concept, we had managed to haul Ben's weight back from its lowest-ever point in February 2011 and, also largely thanks to the contract, Ben was now actively engaging in recovery from anorexia.
When Ben was discharged from CAMHS (because they only work with under-18s), he and I went on to work together, without any NHS therapists (the only real option, post 18, was to go private).
You can read the rest of Ben's story, bringing it bang up to date in 2025, on my website here.
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