During the Swedish ME Association (RME) 2023 conference at the Stockholm County Council Dr. Nigel Speight discoursed on his experiences with children taken into custody in Great Britain and other European countries.
In this issue of the ME Global Chronicle we include the first two cases he reported about. But first his introduction.
Introduction
I’m a pediatrician from the northeast of England. I’ve been working in ME for the last 30 years.
It’s bad enough having a child with ME without having the professionals who should be looking after you, actually persecuting the family. And I’ve got a rather bitter experience of quite a lot of cases like this. I believe other countries have the same problems with young people with ME and their families still being persecuted by caring professionals. It’s an international problem and it’s certainly a European problem.
I have seen over 200 families in the UK being subjected to Child Protection proceedings. Although the title of my talk is about children actually having been removed, there are a large number of children being pressured and subjected to Hospital admissions who aren’t permanently removed. And I’ve got clear evidence that there are similar cases in Sweden, Holland, Norway, Germany, France and Denmark and you will have read about some cases in the USA.
it’s possible that this problem is becoming more frequent. At the end I’ll mention a couple of developments in Britain which are leading to possibly it becoming more frequent and there’s a whole series of long covid cases in children who are beginning to be at risk of being treated similarly.
I’m going to go through some cases in detail and then try to understand where the failings were in the professionals. As you’ll see I concentrate on the responsibility of the medical profession, but social services and education also contribute to this problem
Karen Gordon
My first case is a extremely tragic and a severe case who was under my care. 20 years ago she was severely affected at the age of 15, lying in a darkened room, bedridden. A lady pediatrician subjected her to disbelief and said that she went to court to get a court order. She told one of the highest judges in the land that if she was given this court order and admitted this girl to hospital for graded exercise treatment, she would have her back at school within 6 months. So she got a court order. For 6 months this girl was admitted to hospital and subjected to vigorous daily physiotherapy, and she got even worse.
After three months the girl bravely spoke up for herself and told the physiotherapist she was behaving unethically and the physiotherapy stopped. The judge was then left without knowing what to do or to admit that she’d been misled and bizarrely the family eventually persuaded the judge to let the child come to my care in Durham. This is how she looked 20 years ago on my ward catched in a darkened room and very, very severely affected:
Her mother who was a nurse stayed with her at all times. Over the next 20 years she remained severe – not surprisingly. And this is now a very current issue in that she has spent the last 18 months in hospital. She is fed with a Naser jonal tube, lies on a ripple bed and still has a urinary catheter. And the hospital has lost patience with her and has virtually sent her home to die. There’s an international petition up in her favor.
So that is a very current case I believe that girl was permanently damaged by the physiotherapy she has been given.
A boy from the Isle of Man
A slightly different case but quite a famous one.
There’s much public knowledge about this case and I have met this boy. He was diagnosed on the Isle of Man and was sent to London for confirmation of diagnosis. A trainee psychiatrist who wants to stay anonymous, intervened in the case and disputed the diagnosis of ME. She claimed that it was all due to an overprotective mother. She persuaded the social workers on the Isle of Man to take the boy into care and to hospitalize him, because the boy was not protected by a diagnosis of ME.
He was then subjected to quite an inhumane treatment in the hospital. The nurses would put him in a wheelchair without a seat belt and push him around the ward at speed and then stop suddenly. A normal child would be able to prevent himselves from falling. Unfortunately the boy was unable to prevent himself from falling and frequently fell onto the ground. The nurses didn’t learn from this and carried on doing it. They even took him into a a kind of ghost train in a funfare, where he was assailed by skeletons and ghosts coming onto him. They hoped to prove that he would put his hands up to protect himself and he wasn’t capable of that either.
Finally in a bizarre repeat of the medieval test for witchcraft to prove that he was a fake they threw him into the hydrotherapy pool to prove that he could swim. He didn’t swim, had to be rescued and would have drowned otherwise.
All that went on because he was not protected by a diagnosis with ME and was subjected to disbelief.
There’s a similarity to a lot of these cases. A lot of doctors can handle moderate ME and can believe in it. But what they have trouble with sometimes, is when moderate ME becomes severe ME.
Source: Riksförbundet för ME-patienter
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