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Saturday 31 August 2013
Parents vs Professionals.
"I think sometimes these conversations are becoming too black-and-white. If you look at other diagnoses, a child deteriorating can have a few causes:
This reply came in on Nelly's Blog overnight and it raises an interesting perspective. I suppose I do come across as a shrill harpy complaining about professionals and treatment protocols a lot of the time and feel the need to defend myself, so here goes.
I suspect the person who wrote this may be a professional. If you are, I would love you on my team, please, as long as you explain all this to parents. Knowing that a professional is "on side" and wants to work "with parents" to help a severely ill child is the key. Being prepared to discuss and debate what works for one particular family and try things out, rather than doing tick box "CBT-e for 6 weeks and she should be better. If she is not she is not "engaging"" prescriptions that we see all too often.
What I am kicking back against is the power thing. Irish up put it so well
"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".
I am ploughing my way through two other cases involving CAMHS teams at the moment. One here and one in Australia. In both cases, the prejudices and preconceptions of the lead clinician have put a child's life at risk.
In one, the mother is being told that she has "attachment issues" - the child was 7 when this first started and therefore too young to have an eating disorder - and has been denied access to a second opinion from a specialist for TWO YEARS. The lead clinician has called Social Services in, threatened to have all her children "taken into care" and obstructed any kind of treatment for this child by insisting that she stays in full time education, among other conditions. This is an abuse of power. Everyone has the right to a second opinion. I am in awe of this mother's patience and courage as she works through the system trying to ensure that, eventually, her child will receive the proper treatment for her very serious life threatening condition. What physical and mental damage has been done to the patient and to the family is immeasurable and unquantifiable.
The other case involves a mother who was literally screaming for help. Instead, she was again threatened with having her children taken into care. Why? Again, her child was too young to have an eating disorder and she (the mother) was obviously "deliberately starving" her. The child is now in hospital and very very sick. The mother does not have any form of "Munchausen's by proxy". The clinicians have had no reprimand, no rap on the knuckles, no kind of disciplinary hearing at all......Yet.
Sadly, the parents of children with eating disorders are marginalised. Until we can get some kind of balance and we encounter more clinicians who are on our side and want to work together, rather than blame someone with a load of non-proven theories (attachment issues AND Munchausens all in one blog?), we have to carry on fighting.
Having said that, there are some great people out there, fighting with us. I am very proud to not only know them, but also to call them my friends.