Thursday 13 December 2012

Just how did they plan to do that?

Looking back through old blog entries I came across one where I talk about how CAMHS always promised that, once Ben was discharged from treatment for his anorexia, CAMHS would monitor him for at least 12 months to check that everything was continuing to go in the right direction. Sorry, but have I missed something?

Ben was discharged in February. Yes we had a woman come round to the house to talk about how she could help Ben in the transition to university (which, in the event, wasn't much help at all), but that's all.

It certainly wasn't what I'd call "monitoring for 12 months".

Reading through the printed proof copy of my new book, "Please eat...", and going back over previous blog posts (with a view to editing them and putting them into a book), I am angry again.

Angry at the way this promise was never followed up.

Many a time Ben was also told that CAMHS would help him adjust to being Weight Restored when he got to that point. "Don't worry, we will never let your weight spiral out of control," they said. This gave him a definite reassurance and put his mind at rest.

Yet none of this happened.

Yes, Ben is "almost" recovered. But I've been saying "almost" recovered for some time now. The same old loose ends are still extremely loose - flapping around like mad sometimes. And we need someone to help us tidy them up.

I can only hope that the private psychologist we're meeting with on Saturday can do this. Or, at least, identify any permanent co-morbid issues that are preventing Ben from achieving that final few per cent of recovery. So, like Jenny Langley (author of "Boys get anorexia too") said to me at the FEAST conference the other weekend when I asked her how her son is getting on these days, I can say - with confidence - that he is "One hundred per cent recovered" from the eating disorder.

The good news is that, from having talked with this new psychologist at some length on the phone, I am pretty confident that she can sort out Ben's remaining issues.

But, then, I thought that about the first psychologist. (But Ben didn't get on with her.) And the dietician. (Who I believe can still help, only I can't afford to pay for two private therapists.)

And the trouble is, this new psychologist is the most expensive of all at £100 an hour. Ouch! I can't afford too many sessions with her!

The other route, of course, is to go back to the GP. But, then, we risk ending up on a massive waiting list again with who-knows-what therapy at the end of it. Probably just counselling. Like the completely useless NHS counselling I received when I was going crazy at the height of Ben's anorexia.

Once the Saturday morning session with the new psych is over I will work out whether it's worth going back to the GP. If the psych can actually make a formal co-morbid diagnosis, then that will definitely help.

Just to reminder you... the issues we are dealing with are (1) Ben's fear of socialising and lack of social skills (which could simply be due to the fact that he's been isolated for so long), (2) His constant thinking about food (which isn't necessarily a negative thing, these days, but it does dominate his thoughts and may affect his ability to focus on future study, jobs and relationships) and (3) The eating issues that came to light when he was at university for those two days plus the worry that his weight will spiral out of control - plus, of course, helping Ben to ease himself into university.

Now, nothing has been done on that count. Nothing at all. And this is what this "Gap Year" was all about.

I feel frustrated, stuck and - potentially - broke at the prospect of £100-per-hour treatment sessions.


  1. I share your anger and as I'm having a bad day will add my rage to yours at the inadequacy of services. One of my hobbies when feeling like this is to visit the Trust's website and study their information. This is today's message from them to me "You rated this page as 'Very poor'. Thank you"

  2. by the way, I don't want to put any doubts into your mind at all, and am coming at this from the position of someone who is actively campaigning for a diagnosis of a co-morbid condition for my child, but I would not have said that those three issues were anything other than typical of an eating disorder. Not, thank goodness, a Severe and Enduring Eating Disorder and not one acute enough to qualify Ben for NHS Adult treatment (sigh).

    1. Yes, I believe that much of it is probably due to the fact his ED treatment is still a "work in progress", but there are underlying issues that have been with Ben from the day he was born. Thankfully it looks as if we're seeing the right person tomorrow - former chief psych at the Yorkshire Centre for EDs.

  3. What would happen if the psych made a formal comorbid diagnosis - would he get more NHS treatment?
    Would depression count as a diagnosis or does it have to be a personality disorder or Asperger's or something like that?
    Good luck with the psych anyway! I hope it goes well!

  4. I'm not sure. It would probably mean a very long wait, like we had right at the beginning. But I can only afford 'so many' sessions privately!!!

  5. IF we get the comorbid diagnosis we are looking at here (Aspergers or as my litteral daughter will tell you Autism as Aspergers is not in the DSM) then precisely nothing will probably happen, but it might help to explore treatment options not previously offered or at least to explain our problems with previous treatments (FBT and inpatient for AN and "DBT" which was nothing like DBT, don't get me started.... for BPD, a diagnosis about which we are all very uncomfortable anyway).