Friday, 13 September 2013
On the back foot
So its 3.42 am. No, really it is. I am at my desk with Uhu by my feet, cup of tea and blogging.
I have been involved in a very complex, very distressing and very frightening case with my Mum in Scotland ("MiS"), along with a team of other amazing parents of children with eating disorders. We are a group of volunteers who all give our time and skills for free. We have been trawling through medical records, Child Protection hearings, referral letters, letters from hospitals, emails, forum posts and have assembled a time line and a clear (and hopefully not to emotional) case.
I have read things written by psychologists and psychiatrists, that I had hoped would have been in the context of an historic document from the 1980's. I have read about "attachment issues", when a child of 7 is separated from her loving mother and put "under observation" in hospital. The child and mother are anxious and distressed (ergo an "attachment issue") Really? Yes, really. Apparently, if your 7 year old becomes distressed, when in hospital, because you are asked to leave, this is an attachment issue, especially if you are upset and anxious about leaving your child.
Well, who would have known?
Any of you who have had a sick child in hospital are probably scratching your heads right now. Hospitals go out of their way to accommodate parents. You are probably thinking (and, don't worry, it's a question I've been asked a lot!), are you sure that there is not something more sinister going on? I mean, no normal doctor would separate a mother and child at that age. Munchausens by proxy perhaps? Abuse? Is the mother an alcoholic? The father? Some other strange condition that necessitates a 7 year old to be separated from their mother in hospital? Surely there must be something wrong with parents?
No, this is not the X-Files. This is not Hollywood. This is not a "Made for TV' film.
Welcome to the mysterious world of Mental Health "care".
I have had to research "Magical Thinking" and it is now a concept I understand. It is still not a concept I would apply to a child whose weight is below 1st percentile as either an explanation for their failure to thrive or as some kind of diagnosis. Mind you, I am not a trained psychologist or psychiatrist. I don't work for the NHS and I am not in charge of vulnerable children and adolescents with mental health problems.
I have read horrible parent-blaming "anxious mother" stuff. Look, people, when you are parenting a very ill child, it doesn't matter what the diagnosis is, it is really HARD and makes you anxious, upset, tearful etc etc. To be blamed for your child's illness is even more stressful. To have Child Protection issues raised and hearings held puts you under even more strain. To have held onto her sanity through this horrible process, MiS gets the gold star of the week.
For the 2 and a half years
since she first asked for a second opinion from an Eating Disorder specialist.
Which she is still "not allowed" because a diagnosis is not necessary.
In fact, CAMHS have tried to discharge the family twice. Why? This is a family that is so desperate for help with their sick child, they have, in effect, effectively prostituted themselves to get that care via "the system" with absolutely no result at all. They have been bullied, ignored, told off, given useless (and in one case, extremely damaging) suggestions, subtly accused, blamed and had the Shite kicked out of their self-confidence in parenting. There have slurs, insinuations, accusations and let's not forget 3 Child Protection hearings. If the parents had let themselves slip out of the system, I have no little doubt that two loving, loved children would be "in care".
Can you imagine that? Can you imagine that you have a physically seriously ill child in front of you and you have no diagnosis BUT you are prevented from seeking help elsewhere, getting a diagnosis or even seeing another doctor because your present team believe this is your fault? That you might lose that very sick child and her sibling because access has been denied to a specialist or a second opinion or any kind of meaningful or helpful treatment? If your child had cancer, would you be accepting that it was somehow your fault - your anxiety made your child ill - and that you had no right to treatment?
The Academy for Eating Disorders makes their position on parents quite clear.
If I were a clinician in this case, I would ask advice from the experts, whose advice is FREE and by telephone.
But, hey, why would you bother to research this Eating Disorders, if you have a nice cushy NHS job and pension and you have the power (and perhaps the middle class prejudices against mothers on benefits to go with it?) to just block any kind of diagnosis, second opinion or help for a family, whilst playing out your favourite bullying game (3 Child Protection hearings? Really?)?
I shall be interested when this goes "live" to see how it plays out.
But once again, I must must must emphasise that there are some really good people out there, working amongst this band of egos. Some amazing Social Workers and Educational Psychologists in this case, who are prepared to stand up to the bitching, sycophancy and bullying. Praise be for them or we may not have had a case.