AHMF: Protecting the needs of children with ME

Protecting the Needs of Children with ME
Dr Nigel Speight, Consultant Pediatrician

M.E. sufferers commonly meet with disbelief and rejection from their doctors, when what they need is support and sympathy. However, in the case of children and young people with M.E. there are much worse ways in which they can be treated by professionals, and families can end up wishing that the doctors had rejected them and left it at that!

Over 10 years ago there was the terrible case of a boy from the Isle of Man who was subjected to a court order and admitted to Great Ormond Street Hospital against his will. The court order was eventually reversed and everyone heaved a sigh of relief and assumed nothing of the sort would ever be tried again. Unfortunately, this is not the case. Over the last two years there have been a number of cases in which a similar approach has been threatened and one case in which a 15 year old boy has actually been detained in a Child Psychiatry Unit for 7 months, against his will and that of his parents.

Why are professionals behaving in this way in more and more cases and how should families behave when faced with these threats? I personally believe that the main factors behind these cases are:

The Royal Colleges Report. The section on children was particularly unfortunate, recommending immediate return to school and discouraging home tuition. It was clearly written by a psychiatrist was sees M.E. as little more than a variant of school phobia.
Doctors who don't believe in M.E. in the first place, combined with:
The drive within the educational system to enforce school attendance.
A belief in the efficacy of graded exercise and cognitive behavioural therapy.

Suffice to say that the evidence for the efficacy of these approaches is extremely weak and they are certainly not curative.

This leads to an initially well meaning but, I believe, misguided approach characterised by therapeutic enthusiasm, as in "We have ways and means of making you get better".

This view was summed up in a lecture by a prominent Child Psychiatrist to a national meeting of Britain's paediatricians last year in which the speaker concluded, "This (M.E./CFS) is a treatable condition and parents who stand in our way should be treated with court orders". This school of child psychiatry is probably unconsciously applying the model of anorexia nervosa to M.E./CFS. They are used to getting court orders to enforce life-saving tube feeding against the child/adolescent's will. This can be justified in terms of medical ethics in that the patient genuinely believes he/she is over-weight, and therefore is not competent to withhold informed consent.

In the case of M.E./CFS, the situation is very different. It is rarely life threatening, and the efficacy of the treatment prescribed is extremely questionable, therefore parents and young M.E. patients are perfectly entitled to withhold consent, and in my opinion it is basically unethical for doctors to attempt to enforce it by court orders.

Typical Sequence of Events

Usually the child is too unwell to attend school. In addition, he/she is usually either not under a paediatrician at all or under a paediatrician who doesn't really believe in M.E. and feels it is his duty to refer the young person to a Child Psychiatry Unit.

The parents and young person usually stoutly decline to see the Child Psychiatrist on common-sense grounds, or they see the Child Psychiatrist and are unimpressed by the arguments fo admission to the psychiatric unit. The paediatrician (often a Community Paediatrician) then feels (misguidedly) that it is his/her duty to actuate Child Protection Procedures on the grounds that the parents are not acting in the child's best interests by not taking medical advice.

This is naturally very threatening for the family. The local social services departments therefore have a duty to investigate and arrange a Case Conference. At this conference the family are threatened that if they don't agree to psychiatric admission the child's name will be placed on the At Risk Register with a view to possible court proceedings. This is a nightmare scenario.

How to Survive Such Threats to Your Family

It is difficult to give one package of advice to meet all circumstances as a lot depends on the beliefs of each of the agencies involved. In general, the following advice suits most cases:

Don't panic. Keep faith in your own sanity. Remind yourself that doctors are not omniscient and all-powerful, and your lot are just misguided.
Get a second opinion from a paediatrician who believes in M.E. as a physical illness. It is vital you can choose the right person as if you get one from the atheistic camp it will add to the strength of the case against you. Ask the M.E. organisations for advice. As there is a shortage of enlightened paediatricians at present, Dr Franklin or myself often have to get involved.
Your GP should agree to getting you the second opinion of your choice, under the Patient's Charter. Do not be fobbed off by financial arguments. Threaten to write to your MP and carry out the threat if it doesn't get results instantly. As a last resort, change GP's.
Play for time. There is a lot of inertia in the system. Politely decline appointments to see psychiatrists and social workers until after you have got your second opinion. Quite often social services will go into retreat mode if your second paediatric opinion is positive. If this happens you can afford to allow them into your house to see what a normal family you are.
One problem is that even after they have assessed you as "normal" they still like coming as they far prefer drinking tea with you to going to see "real" abusive families! If social services keep threatening court action then:
Go on the offensive. Write to your MP if you haven't already done so. Involve the media, it's a great story for local radio/newspapers. Ask for help from the M.E. Charities. Get in telephone contact with the other families around the country who have through the same ordeal.
Get a good lawyer. Your average friendly neighbourhood solicitor is usually not good enough. You need a real fighter with expertise in childcare. Get advice from the M.E. charities again. Your lawyer can advise how to resist.
One measure, which worked very well in the midlands case, was to request a judicial review of the actions of the doctors and social services department. This freezes everything and if the eventual judgement is in your favour you have won by a knockout. However, nothing is foolproof and there is always a danger that the judge will call in the "wrong" expert!

Even if you don't go down the judicial review route, there are plenty of lines of defense through the child protection system.

The case of the 15 year old boy was exceptional in lots of ways, even there things are finally going in the right direction.

I know of four other cases where the social services have retreated or been forced to retreat at an early stage. So even though the threat still remains in some parts of the country, I am optimistic that we are beginning to win the arguments in most cases and protect children from "Emotional and Physical Abuse by Professionals."

Reprinted from 'Action for ME'.