Educating social workers about ME

The other night, I was at a screening of the film Voices from the Shadows at the London School of Hygiene and Tropical Medicine, which had been convened by the school’s film club as a way of marking International Women’s Day. The film is about severe ME, a neurological disease which affects women and girls by a factor of about 4:1 over males, and features a story about a girl who was separated from her family when they objected to graded exercise therapy which was prescribed by an ME unit, which appeared to be making her worse. In the question and answer session, a social worker introduced herself and she said she found the film biased, because it did not represent the less severe end of the spectrum and her team had never behaved as those referred to in the film.

In defence of the film itself, it’s only an hour long and dealt with five cases, all of severe ME, in some detail. The point of the film was not to show that all doctors who treat ME patients were abusive but that abuse had happened and that the situation was not improving. Serious abuses have been perpetrated which have had devastating results, in some cases contributing to young people becoming housebound or even bedbound for life, as in two of the cases depicted. The same is true of social workers — just one of the cases involved children’s social services who went along with what doctors told them, and enforced the doctors’ orders until the family involved one of the UK’s better ME organisations, the Tymes Trust, who had experts on hand who could brief the social workers properly.

It seems that some social workers are touchy about criticism, and there have been a number of TV programmes intending to show the day-to-day work social workers do and difficult decisions they have to make, most recently the three-part series, Protecting Our Children, featuring social workers and their clients in Bristol. One of the social workers in that programme complained that people only notice social workers when things go wrong, and the news won’t report it when social workers save a child from abuse, because that’s their job and they do it every day. The problem is that the mistakes are extremely costly for the families they affect, sometimes resulting in children being permanently separated from their parents without good reason. It is possible that some departments have cultures which are more hostile to families, or certain types of families, than others and more likely to seek children’s removal. It is also true, however, that putting children in foster care is expensive and children’s homes few and far between; it is preferred to keep children with their families or extended families if at all possible.

When it comes to medical matters, social workers follow the doctors and not all doctors know about certain chronic illnesses, such as brittle-bone and connective-tissue disorders, and may attribute the injuries children suffer as a result of these to abuse. It has been known for parents to lose children because of this, and for some to be adopted if the investigation into a child’s injuries drags on for years — and they do not get them back once they are adopted, even if proved innocent. In the case of ME, if they are not aware of the differences of opinion about the subject, they may well bow to a doctor’s opinion when it may be wrong, even if strongly articulated and backed up with fancy theories. So, the ME community needs to educate social workers about this issue, and social workers need to educate themselves, because a child’s long-term future could well depend on it.

From reading some of the various ME forums on Facebook and elsewhere over the past couple of years, it seems most of the anger is directed at medical professionals and psychiatrists, because it’s they who are the source of the disbelief and cruelty that ME sufferers, including children, have to deal with. Social workers rarely get a mention. The film depicts the abuses because they happened, and the people responsible are still working while those who have tried to defend the sick children have been ostracised and sometimes been the subject of malicious complaints. That a film produced by people affected by this reality will not always show the professions involved in a good light is to be expected.

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  • Tom K

    I think one of the problems with social workers in the UK (say) in child protection cases (say) is that they get into much more trouble for missing a true case than for diagnosing a case that isn’t one. This may make them inclined “not to take any chances” and treat some cases as suspected child abuse/similar cases when the chances they are is low. At least doctors are somewhat responsible “both ways” (underdiagnosing and overdiagnosing).

    Not sure what can be done except to lower the threshold so we don’t expect social workers to have 100% sensitivity i.e. never miss a case. If they are expected to have 100% sensitivity, as I say, they will likely overdiagnose to be on the safe side.

    I imagine child protection procedures cost a lot of money - a professional’s time costs money (e.g. with NICE, to have a healthcare professional give a therapy may cost £50 an hour or more; doctors can cost £150-200/hour). In such a scenario, paying for testing can be value for money in terms of suggesting whether the problem is “physical” or not i.e. the tests wouldn’t have to be proper diagnostic tests for ME, once they just showed a physical problem distinct from Munchausen’s Syndrome by Proxy or whatever.

  • Hello.. Social workers are so much hard working that they do best for doing their job. The responsibilities are so many on them. The information you shared in the post is very nice.