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Friday, 16 October, 1998, 10:26 GMT 11:26 UK
ME parents 'threatened with care orders'
Doctor and child
Children with ME may get few options over treatment
Some families of children with ME are being threatened with having their offspring taken into care, according to a campaign group.

The ME Association says that, in the last year, it has received a number of calls from worried parents who have been told their children could be put on social services' at-risk registers if they do not accept psychiatric care.

Parents may get a boost from the result of a court hearing on Thursday, which gave the family of a 13-year-old ME sufferer the right to a judicial review of a decision to send him for psychiatric treatment.

The ME Association says that lack of understanding of ME (Myalgic Encephalomyelitis) is leading some doctors to only give parents the option of psychiatric treatment for their children.

If they reject this, they are reportedly being put under suspicion, with doctors implying the ME could be linked to parental neglect or abuse.

Triggers

Although no-one knows the exact cause of ME or chronic fatigue syndrome, the ME Association says it is generally accepted that there are six main triggers.

These include stress, reactions to cocktails of vaccinations and bacterial and viral infections.

However, while parents are more likely to believe that there is a physical cause for the disease, psychiatrists believe it is more psychological.

The ME Association accepts that there may be some psychological element to ME, but it believes patients are not being given enough choice about the treatments which might be effective.

"There is a psychological element to ME as there is to all chronic illness. The difficulty is when doctors only think of the psychiatric route," said a spokeswoman.

"That can prove more harmful than useful. Families who don't think their child's illness is a psychological problem are being penalised.

"We have heard cases of parents who refuse psychiatric care who are then deemed to be the problem and threatened with their children being taken away. It is quite frightening."

Media cases

She added that the Association had noticed several calls by worried parents over the last year, which it thought were prompted by media attention on some high-profile court cases.

These include Thursday's High Court case. The 13year old from the West Midlands won the right to a judicial review of a decision by community paediatricians to refer his case to social services.

Doctors from Solihull Healthcare NHS Trust had said they believed his illness might be due to parental neglect.

But they and Solihull council told the court they agreed the family should have a right to judicial review and they recommended that the child's name be taken off the at-risk register.

Tv presenter Esther Rantzen, whose daughter has ME, was at the court. She called the verdict "a very important victory indeed for the right of parents to choose the type of medical treatment they want for their children".

The ME Association estimates that around 25,000 children have ME and says the cases where parents are threatened with care orders are a very small proportion and usually involve very severe cases.

The symptoms of ME include chronic fatigue, muscle pains and migraine, but in extreme cases patients can develop a permanent physical disability.

Young children often have difficulty explaining their symptoms, which leads to further confusion about the illness.

Multidisciplinary treatment

The ME Association says some doctors are still ignorant about ME, but those who are sympathetic sometimes are not aware of the range of treatments which might work.

"A doctor who is good enough to recognise the illness may not necessarily be good enough to look at useful treatments," said the spokeswoman.

She added that different treatments helped different children. Multi-disciplinary approaches were the most effective, for example, a combination of mild drug therapy and nutritional advice.

The ME Association believes the situation of ME sufferers will improve gradually after the government's Chief Medical Officer officially recognised the illness in June.

"There is light at the end of the tunnel, but changes come slowly," said the spokeswoman.

The Royal College of Paediatrics and Child Health has a working party on ME. It is due to publish a report on the illness on 28 October.

See also:

20 May 98 | Medical notes
20 May 98 | Health
30 Sep 98 | Health
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