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Thursday, 10 October 2013

Keeping the starfish in the sea

“While wandering a deserted beach at dawn, stagnant in my work, I saw a man in the distance bending and throwing as he walked the endless stretch toward me. As he came near, I could see that he was throwing starfish, abandoned on the sand by the tide, back into the sea. When he was close enough I asked him why he was working so hard at this strange task. He said that the sun would dry the starfish and they would die. I said to him that I thought he was foolish. there were thousands of starfish on miles and miles of beach. One man alone could never make a difference. He smiled as he picked up the next starfish. Hurling it far into the sea he said, "It makes a difference for this one." I abandoned my writing and spent the morning throwing starfish.” 
― Loren Eiseley

So more files arrive in the Mother in Scotland case and, as the team unravel the mystery of why this child was denied a second opinion for two and a half years, we discover that Dr C made the most damning and damaging "red flag" diagnosis of the MiS and used this as an excuse to deter other clinicians from helping and MiS from accessing any kind of reasonable, unprejudiced care even from her own GP.

This diagnosis, the profile of which MiS does not fit in any way and is an extremely rare diagnosis, enabled the Ayr CAMHs team to wield immeasurable power for the good of the child.  They didn't.  It seems to me, from reading the notes, that they just used it as another stick with which to beat MiS.  The interests of the child are nowhere in the notes.  The prolonged insistence on blaming the mother and refusal to listen to her or grant a second opinion weaves its insidious way through every paragraph.  And the child clings on to life because MiS insists on feeding her, despite every obstacle put in her way - including insistence on full time school.

I was discussing - well, that's not true - I was ranting about this to a friend, who works within the system at much the same level as Dr C.  She said something that broke my heart.  She too would have not diagnosed an ed - admittedly, she would not  have blocked a second opinion - but would have looked for the problem "within the family".

Despite a massive boost from Professor Lask yesterday, in his Radio 4 interview, where he started with the fact that, for far too long parents have been blamed for causing eating disorders and there is NO evidence for this, it seems that parent blaming is endemic in our system.  That there is no point investigating any further or opening up your mind to listen to what the parent has to say because we parents are the problem and need to be fixed.

I also realised, in a blinding flash at 1.30 am that she must think that HWISO and I are somehow responsible for our daughter's eating disorder and that somehow our family is dysfunctional - and from then on, the mind wanders and I hate that she might think so badly of HWISO, let alone me.  Look, I know we are not perfect - no family is - but I feel dirty and soiled that someone I thought respected and liked me has lingering at the back of her mind that we are somehow responsible for our daughter's illness or that she "chose" an eating disorder in some way to highlight our dysfunction.

Compared to how MiS feels, which is totally wrecked, this is minor.  She has been totally destroyed by this diagnosis and is blaming  herself for it.  You and I, dear reader, know this is absurd and that this whole case is riddled with inconsistent psychobabble, arrogance and prejudice - well, just take my word for it, it is.  

What bothers me is that I had always hoped that a new, younger generation of clinicians coming through the system would have dropped the whole parent blaming, "it's a family problem which needs to be fixed by talking about it for two and half years unless the physical crisis is so obvious that hospitalisation is needed" thing.  But it seems not.  It seems that this outdated, dangerous, spurious and baseless theory is embedded there for another generation.  What worries me is how far these people are prepared to go in terms of ordering Child Protection hearings and drawing in other agencies to collude with them and the frank abuse of power in their efforts to "prove" their baseless theories.  I am seeing it not only in MiS' case but also in others.

In the meantime, children aren't thriving.  And parents like me are crying at 1.30 am whilst writing emails to MiS telling her that, no, she couldn't have done more, no I don't believe the psychologist however many stupid letters she has after her name and No, you are not a bad mother.  This really isn't your fault.  

I feel guilty for throwing this starfish back in the sea and I am diving in after her.  There will be no white flag from me.

Just to be perfectly clear here, Parents don't cause eating disorders.  Patients don't choose them.  

4 comments:

  1. Outrageous, ignorant, cruel, short-sighted, unconscionable, horrific, tragic...and on and on. Honestly, how backwards can your UK clinicians be? Even back in 1999 here in the U.S. when my D was diagnosed at 11 with anorexia nervosa, no one even hinted that my husband and I were to blame. I know it does happen all over the world, and in the U.S., too, but not then, not for us. It has been a life-altering thing for everyone in our family, and I can't imagine what it would have been like had we gone through even one-tenth of what this mom and child have gone through.

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  2. Seething, crying and yes, I went through this early on, however, our psych stepped in on our behalf and got them off my back just days before a Child Protection Hearing. I was devastated then, but nothing in comparison to what MiS is experiencing. I mentioned to Norman Lamb in our meeting a few weeks ago, that I felt this insipid view is causing a great deal more damage. Education is required at a grass root level for social services, GP's (and that will be happening) to name only 2.

    Suddenly coming to the realisation a 'friend' amongst that professional group also has been trained to 'look within the family' feels like being punched in the stomach. However, your work Charlotte Bevan is a beacon of light, the Lighthouse to those like MiS and so many others, guiding us through this constant sea of CRAP from those who should know better!

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  3. Charlotte, counsellors have much less training than psychologists - four years (into my fifth now) part time rather than seven years full time - and I can t speak for the rest of my cohort, but from the admittedly one-sided version of MiS's story I've followed here and on ATDT, I can't see why anyone would rule out an eating disorder and look for problems in the family. Don't give up on my entire generation of therapists, if I'd ever come across MiS I would have been fighting for rather than against her too. Someone very close to me has an extremely abusive family and I am more than aware of the effects of that kind of upbringing, but equally I don't believe in looking for problems in the family based on the diagnosis of the child - the danger is that you find whatever you're looking for, even if it's not there. I showed every classic sign of having a background of child sexual abuse when I was a teenager (in reality I had no sexual contact, bad or otherwise, until I was 18), and my parents picked up on that suspicious to devastating effect, divorcing themselves from my treatment or even any support at home because they felt so accused by my psychiatrist. I just wish my first contact with mental health professionals had been with a team who had up to date knowledge and beliefs about this sort of thing.

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  4. this is why parents need to be fierce, why we also must support one another. Before we even began any sort of professional treatment this "overpowering, strong, mother" was doing what her instincts shouted for me to do. My star fish was going to honor herself, take baby steps if need be, but she was going to learn how to eat again. Death was too close to our door. The casual, let's set up counseling and keep this from your parents, was killing her as much as the ED. I am just saying, not that I saved anyone, but that we must empower one another and as said before, be very fierce. Lives are at stake. Was I lucky? Some might think that mine wasn't as sick or even that we, her parents in our great imperfection and dysfunctions caused her to be sick. I DON"T CARE anymore what fools think. And no, I don't have a fancy degree to wave in their face. What we do have is love and that beats scissors, rocks, and all sorts of ignorant treatments out there. ( and yes, I know of at least one therapist I'd trust any child with but she was not here for mine) I can't sign my name out of respect for my daughters story but am allowed a voice. Carry on Charlotte. Jump in and get that star fish help even if it's from her dysfunctional family because this CAN be done at home, especially when our systems fail us. We've been in recovery though we are still perfectly imperfect in our dysfunction. We are human and we are happy despite not being perfect. (must be really f ed up) Anyway, until true support is available we must face our fears and give our own children the tools and food they need. No white flags here either.

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