Wednesday, 5 March 2014

"So where does this leave us?" asked my husband

"Okay, it's wonderful knowing that young people in Scotland are being given a better chance of recovery, and sustained recovery, from their eating disorders - but where does this leave us? How does it help us?" asked my husband.

The truth is that it doesn't really leave us any better off, along with many, many other families who have received ineffective and outdated treatment for their adolescent's eating disorder - and who will continue to do so across parts of England.

Professor Lock said that it's essential to treat the young person within that "five-year window of opportunity" before which studies have shown that recovery tends to flatline, especially once they reach adulthood.

It is now five years since my son, Ben, first began to exhibit signs of his eating disorder, although none of us realised this is what was happening until way into the summer of 2009 several months later.

He was left to deteriorate while we waited for treatment - and when that treatment finally came (as a result of Ben being hospitalised with Bradycardia when his pulse plummeted to 29) it was - in retrospect and knowing what I have known for quite a long time now and which was officially endorsed at the weekend - largely ineffective and a waste of time and money, not to mention crucial years of his young life. After an initial period of weight-gain, he began to lose again, leading to his lowest-ever weight before I (not CAMHS) took measures to push his weight back up again (via our Contract).

He was discharged after 26 months of CAMHS treatment at the same weight he was at the start - and he and I worked tooth and nail to do what CAMHS had failed to do i.e. get him back to the weight he should have been, a weight that followers of FBT (Family Based Treatment) would consider to be 'full recovery'.

We are still not there. Indeed, lately, Ben has started to question why he needs to gain more weight, and that kind of thing sets off the alarm bells in my head. It makes me feel ever so weary...

When he was discharged from CAMHS, his head was still in turmoil - and I had to work hard to undo a lot of the damage caused by what he'd learned during his 26 months of treatment. He still suffers from bad depression and he is finding it punishingly hard to resume a normal life at university, despite a few chinks of brief sunlight in his uni experience.

There are still some other bits and pieces that aren't quite 'normal'. Well, not in the sense described by Prof Lock on Sunday when someone asked him "What constitutes full recovery from an eating disorder? What does recovery from an eating disorder look like?"

Full weight restoration is vital, of course, said Prof Lock. All too often children are being discharged when they're barely within the healthy weight range. (Remember when CAMHS said to Ben: "We're happy to settle for 'good enough' if you are" and that "some people choose to remain at a lower weight because they feel more comfortable with it".) 

But it's also about normalised behaviour, especially when it comes to eating. It is what is considered to be the social 'norm'. No calculating, no weighing, no fear-foods, no resistance to weight gain. Just 'normal' behaviour.

Yes, there may be some co-morbid issues still going on which were there before the eating disorder, like depression (but which came first, I wonder personally, the chicken or the egg?) Ben was always a 'glass half empty' guy and he still is.

Yet when Professor Lock asked me afterwards how my son is getting along, I gave the answer I find I'm always giving these days which is this:

"He's... okay... there's still a little way to go... he's still underweight, he still has some fall-out issues from the anorexia..."

This is why, five years on, I still can't say hand on heart that my son is 100% recovered from his eating disorder.

And, no, what I learned in Scotland doesn't help our situation. To be honest, it just makes me bitter.

Bitter to know that so much of my son's life... one quarter of it to be precise... has been wasted through this eating disorder and the ineffective treatment he received from an English CAMHS team who, I realise, probably didn't have the knowledge or training to know that there was a better way and that much of what they were doing was doing more harm than good.

I don't blame them personally; I blame The System.

The System which led to one Scottish CAMHS professional approaching a former patient's mother and actually apologising for the eating disorder treatment she'd given her daughter before she was re-trained in the evidence-based FBT (Family Based Treatment).


  1. My earlier comment seems to have vanished. Possibly just as well.

    1. Actually it just came through, but I didn't publish it having seen your comment above?? xxxxx

  2. No, that was my second attempt - but only half. Please don't waste too much time on bitternes. Prof Lock was there to sell his treatment and he sold it HARD. He has an excellent product and I'm not being critical of him for doing it, but the use of the "5 year window of opportunity" was for the Scottish Commissioners, not for desperate parents. It was done to get them to get off their backsides and buy into the treatment.

    I'm not saying that they shouldn't buy into it - they should, but it's a helpful treatment, not a magic wand. Even in health set ups like mine where the ideas expoused by Lock were adopted over a decade ago, treatment isn't perfect, regrets are a plenty and people like my daughter need treatment 5, 10, 15, 20 years after diagnosis. It sadly happens.

    That's why Scotland, and England, and Wales and everywhere needs better access to immediate, evidence based care, AND follow up, AND hopeful, helpful care based on a drive for full recovery not palliative hogwash for adults who have been ill for decades, AND intensive inpatient, AND short term respite care.....

    1. He admitted that it would be mega unrealistic to claim 100% success rate - and his success rates fall well below this. But they do appear to fall above traditional methods when it comes to just about everything, which has to be worth looking at, even if the child in question does turn out to be one of those for whom FBT fails to work.

    2. If it were me, coming to this new, I'd say "Okay, let's try it - it makes sense to try the method that's getting better results and if it doesn't work, then at least we tried rather than never knowing".

  3. Who says James Lock and his treatment is the 'right' treatment? Who says James Lock is 'right'? I agree with Marcella's comments.

    I personally feel that FBT can do more harm than good for some families (and the sufferer themselves). It would NEVER have worked for me, in part because my anorexia nervosa (AN) was 'atypical' and probably not AN at all; despite the low weight.

    FBT is massively stressful for families to engage with and it would have tore my family apart. Furthermore, how many parents can realistically take time off work to care 24/7 for their sick child? To resign from one's job would be a huge risk if FBT turned out NOT to be the best treatment for the child.

    I recall reading a very interesting thread on the ATDT form where Charlotte was posting on behalf of Bryan Lask. If I recall correctly, he argued that FBT is not as good as it looks and that the best treatment for AN is one that focuses on the underlying neurobiology, which is not be the same for all people with AN.

    I write this because I don't like to see you despair, Bev. Your son may have another co-morbid condition that plays a greater role in his eating behaviours and social difficulties than being underweight.

    1. Thanks for this great and well thought-out reply, Cathy. I would like to respond to it in a blog post, so watch this space...