Tuesday 5 January 2016

Yay! The doctor from Leeds NHS has replied to my email.

And this is what she said: "It is lovely to hear from you and of your interest in the new children’s community eating disorder service soon to be established in Leeds. It would be very useful to involve you in our local service developments as we recognise that the involvement of young people and their parents is integral to the success of any new service plans. I’ve copied in my colleague who is the clinician leading the service model developments; I think he would be ideal to talk through our Leeds plans with as he has had a key role in identifying the evidence-base treatment to include in the service model." This is so exciting…

Following my revelations, there has been some debate online in the various eating disorder communities of which I am part, queries like will this be true FBT? Where did the Leeds professionals get their training? Was it via the Dr James Lock initiative from the States (described following my visit to the conference in Glasgow a couple of years back – see my 2014 blog post about the feedback from NHS greater Glasgow and Clyde about what's going on in their part of Scotland)? How is Leeds getting its funding?

I, myself, also have lots of questions. For instance I will be interested to hear how the existing mental health clinicians have reacted to the new FBT as a treatment that appears to be diametrically opposite to the eating disorder treatment they have been delivering to date (at least in our experience of treatment for eating disorders in Leeds through CAMHS, of course I can't speak for any other families in the area).

From what I can see from this document, it looks as if Leeds is establishing a dedicated eating disorder service for adolescents (presumably outpatients in the case of the new FBT, because FBT attempts to treat patients as outpatients within a family setting as opposed to in hospital) rather than the multidisciplinary CAMHS service. But this is something I will be asking them about.

It's really is exciting that this is happening in Leeds, the city where my son received his treatment for anorexia, starting back in 2009. As you know, throughout his treatment I pushed to be more involved, as a vital part of the treatment team rather than "just Ben's mum". Or worse, someone who felt they were being regarded as part of the problem rather than part of the solution. (Note: this changed as Ben's treatment progressed and I was accepted, more and more, as an integral part of the "solution", primarily after we introduced our Contract – see tab at top of blog for more information.)

And I would have given my right arm for us to have had support with Ben's eating. Doing this alone was beyond a nightmare. I won't describe it again here, you can find everything in my book.

Also, right from the start, my instincts – and later the information I discovered on the FEAST website and the Around the Dinner Table forum – cried out to push for weight gain/restoration and eating first and foremost rather than wasting valuable time (in my opinion) talking about the courses and – later – allowing Ben to lose weight for so very long during treatment which was supposed to do the opposite. Plus, the fact that there was never any emphasis on getting Ben back to his pre-anorexia weight.

I tend to think that, in cases where FBT proves to be working, parents will go through trauma, yes, but only with the usual battles involved around trying to get their child to eat and all the general unpleasantness and stress of living with a young person who is suffering from an eating disorder, rather than the constant feeling that they are fighting the "status quo" at the same time, which of course adds immensely to their stress, leading to mental health problems of their own, viz the problems I've been having over the last couple of years. (I really feel for my American friends who have to fight the insurance companies on top of everything, at least in the UK we don't have to do that.)

Most important of all, in cases where FBT proves to be working for the patient, evidence shows that they have a far greater chance of recovery and of sustained recovery, and that this recovery can take place much faster than with traditional models for eating disorder treatment. I won't quote the facts and figures here, my dear friend Eva Musby does that admirably on this webpage where she also describes all the difference methods of eating disorder treatment plus evidence or otherwise on their effectiveness.

No comments:

Post a Comment