Search This Blog

Thursday 29 August 2013

Update on Nelly

Well it seems the rest of the world know about Nelly - the blog had more hits in one day than any other blog I have written - but it seems the CAMHS team family therapist remains in blissful ignorance.

"Local FT said he wanted to work with us the family on systemic issues so that ' the very real risk of relapse' is avoided. 'My blood started to boil and I let him carry on about issues with our son, he is an opinionated 16yo.
I heard... We are flagging up that if B relapses it will be the family's fault'."

I can do no better than copy some of the comments on the original blog to explain why the FT is an idiot.

There is not a shred of evidence that a household without firm boundaries causes eating disorders or that setting boundaries prevents eating disorders.

What matters is that eating disorders are biologically based mental illnesses that are nobody's choice and can kill.

Many doctors and therapists meet families when they are already in crisis and seemingly dysfunctional. In most cases of illness and mental illness, the dysfunction came along because of the illness and not the other way around. It's incredible that so many people working with families in crisis are not able to understand this.
or this

I always find it interesting when someone is willing to assume facts not in evidence for the party(ies) who have privilege and power or are otherwise in the stronger position (in this case the CAMHS team), but are FULL of questions and interrogations for the person in the subordinate or marginalized positions. And by "interesting", I mean "makes me suspect they are biased in favor of the dominant discourse".

Meanwhile, the CAHMS team characterizes a woman who is managing to parent other children, is creatively trying to deal with day to day difficulties of chronic binge behavior, is self-educating by reading and engaging in self-care by reaching out for support ALL while dealing with violence at home, as "functioning at the level of her children". ORLY? How many children do we know would actually function under those circumstances? For that matter, how many of the CAHMS team, whose clinical treatment over 15mo was ineffective, would be able to function under those circumstance.

I am also unsure how CAHMS language - "the family continue to engage in such a fragmented and disorganised" "systemic issues within the family" - and all the rest, can be read in any *other* way, than putting "the family" at fault. 

But here is the main issue. Of the CAHMS multi-disciplinary team and The Family, ONE of those groups are trained clinical professionals, whose JOB it is to handle and treat children with mental health diagnoses. THAT is the group who failed to do their job, if over the course of 15mo, the child got worse, instead of better.

Thank you to all who contacted Healthwatch on Nelly's behalf.  I am hoping that someone might get round to tell the Chichester CAMHS team that something is afoot.



  1. As an adult with a 24-year history of AN, I'm intrigued about the claim that "eating disorders are biologically based mental illnesses", because it's not something I've come across when researching the various theories of the illness. Could you give me links to the research into the biological causes so that I'm better equipped to discuss this with my team?

    The lack of a convincing model of why eating disorders exist seems to me to be extremely problematic in treatment because (in my experience) eating disorders services have no clear therapeutic model. E.g. some nurses would run groups on an addiction model, while a therapist from the same unit explicitly rejects the addiction model as a valid way to understand EDs.

    Anyway. That's all a bit of a distraction from the main point: I'm very pleased that the experience of Nelly's family is getting known so that she/the family will be supported as they challenge the team who have failed her daughter so badly.

    1. There is lots of data and papers to support the biologically based mental illness thing. I would suggest looking on the F.E.A.S.T. website for the main bulk of them.

      My particular pet love is the Nunn, Lask Frampton Insula theory. Easily googleable.

      I have found that being agnostic to cause and accepting that it is a perfect storm of genetics biology and environment makes for better treatment outcomes. Wasting time trying to find out "why", when the most likely explanation is that there are a huge number of different factors playing into the manifestation of an eating disorder, wastes value time in restoring a patient to physical health and optimum brain function. There are plenty of resources out there (off the top of my head - Janet Treasure) to show that a malnourised brain cannot function correctly - even in a non-eating disordered person. Normalising nutrition and restoring weight, whilst helping a patient to deal with the truly awful fear/anxiety/depression/OCD tendencies etc that accompany this process seems to me to be a much idea than talking about it.

      As a cancer patient, I know that the researchers are interested in WHY I developed cancer. That, however, has not held up my treatment whilst they spend months/years talking about my childhood!

      For the best evidence based treatment - and I am very aware that the evidence base is tiny - look for FBT or manualised Maudsley studies.

      Oh the Bruche books!

    2. Luckily I've not heard of Bruche so have no books to burn :-)

  2. Lindy, one of the more recent studies that supports biologically based for ED's is the study done by Dr. Kaye.
    Once I started entertaining the biologically based idea, so many of the ED behaviors made better sense to me, as far as why these crazy (not my child) things were going on. It gave a better explanation why a perfectly "normal" child, just 12 yrs old, functional household, good school, excellent depth of friends, could land where she did with an atypical ED just weeks after turning 12. Made no sense, certainly not the old school thoughts on what causes an ED. Also, in looking at some family on my husband's side, we can see the genetic connection.

    I'm sure that Charlotte can point you to other more specific articles, but here's something to start with:

    1. Thank you: I'll take a look at this and the resources Charlotte suggested.
      I've always understood the biology in terms of the effects of starvation once AN is entrenched and the difficulties thus posed in recovery, especially when the brain has lost its ability to rationalise. But I'd always been told that nothing genetic has yet been proven (although I know that phenotype analysis is more promising now that science has enabled more nuanced study of genetics) so I'm really interested to read all the links.

      I've always understood my own illness to be part of a continuum... a manifestation of anxiety and unhappiness that had developed to an acute level by the time I was 10. Obviously I've never believed in a theory of parental responsibility for EDs or any other mental illness but luckily neither have any treatment team that I've worked with.

    2. The genes thing is a complicated one. There has been a recent study about alcoholism and anorexia that you might want to look at.

      I wish that the genes stuff was easy but really found Matt Ridley's Genome book immensely helpful in getting my head round it. Have also ploughed my way through various explanations of epigenetics.

      Carrie Arnold's book Decoding Anorexia - brilliant stuff, as is her website edbites.


    3. Thanks ... more things to add to my "to be read" list :-)

      PS sorry for the comment bombing. I've not seen your website until the post that was shared the other day and have time to read this evening so have been looking at old posts. This blog truly is a great resource for all of us affected by EDs xx

    4. Thank you. Bomb away. I have called in reinforcements whose brains aren't fried by chemo and whose computer is not slowly dying, if that's OK.