Journal of IiME Volume 1 Issue 2 www.investinme.org Children and Young people with ME – A Personal Overview of the Last 20 Years (continued) Child Protection Cases Every one of these was a nightmare for the young person and the family and in my view added insult to injury for young people deserving sympathy and support but getting the opposite. I was involved in over 20 of these cases, all of which reached the stage of a Child Protection Case Conference. There was usually a combination of one or several of the following factors operating to lead to a Child Protection approach: Single mother A disbelieving and usually absent father Other frustrating medical problems eg allergies A record of the family having put pressure on doctors/SSD etc in the past eg for second opinions, SSD support etc A lack of an official diagnosis of ME Another family member suffering from ME, often “unofficially” Severity of the ME, deterioration or failure to respond to some form of medical regime A reluctance on the part of the family to be referred to Child Psychiatry, especially if it involved admission to a unit and restriction of parental access A tendency for the case to be driven by doctors who had never actually been clinically responsible for the young person, who had not therefore taken a history and were thereby prone to disbelief (usually Community Paediatricians, often concerned about poor school attendance) A failure of doctors and/or Social Workers to actually talk to the young person A belief on the part of doctors in the efficacy of their “treatments”, leading to the mother or young person being blamed for the failure to respond. A frequent tendency to invoke the spectre of Munchausen Syndrome by Proxy (MSBP, aka Factitious and Induced Illness) whereby the mother is alleged to be inventing/exaggerating her child’s symptoms for some perverse motive of her own. A distressing sense of self-righteousness on the part of the professionals involved and a reluctance to open their minds to the possibility they were perpetrating a grave injustice. The term “group folly” sprang to mind as each professional sheltered in the security of the group decision, scared to break ranks. In this last respect Chris Clark (Former CEO of AfME) said to me after hearing some of these stories “It actually smacks of sadism”. The good news is that in every case bar one I was able to reverse the Child Protection juggernaut by my report for court. In addition to making an official diagnosis of ME, I spoke to the young person on his/her own, was often able to assert that the young person was “Gillick competent” and did not consent to be taken into care. Invest in ME Charity Nr 1114035 I would love to say that we have seen the last of this sort of case but fear we have not. In this last respect Chris Clark (Former CEO of AfME) said to me after hearing some of these stories “It actually smacks of sadism”. The good news is that in every case bar one I was able to reverse the Child Protection juggernaut by my report for court. In addition to making an official diagnosis of ME, In my experience of cases in the rest of the country, this scenario of the paediatrician being panicked by meeting a very severe case is really quite common and has contributed to some of the cases referred to Social Services. I spoke to the young person on his/her own, was often able to assert that the young person was “Gillick competent” and did not consent to be taken into care. I would love to say that we have seen the last of this sort of case but fear we have not. Grounds for Hope I personally think that the Report of the CMO’s Working Party of 2002 was the best thing to happen to the ME Community in terms of asserting the genuine (i.e. organic) nature of the condition. I believe its potential has been under-utilised by the ME lobby in their support. (continued on Page 41) Mother of Children with ME We're so aware of how the years are passing since our son and daughter were diagnosed with ME and how cruel it is for all the children with ME that they have missed out on their childhood as well as suffering enormous pain. We live for the day that someone like Jonathan Kerr will say that there is something that can be done to help, if not cure, all those who suffer from these terrible illnesses. Page 40/72
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