‘Parents of sick children living in fear’ – Newsnet Scotland, 20 January 2011

January 22, 2011

From Newsnet Scotland, 20 January 2011 (story by Jolene Cargill, Social Affairs Editor).

Watching a child suffer every day at the hands of a chronic, disabling illness is heartbreaking for any parent. Imagine then, what it’s like to be blamed for your child’s illness and threatened with social services.

This is the reality for many families caring for a child suffering from myalgic encephalomyelitis, known as ME or chronic fatigue syndrome. In fact, the number of parents in the UK being threatened by doctors who say they will report families to child protection agencies has doubled in the last year.

The Association of Young People with ME (AYME), the UK’s leading charity supporting young people with ME, claim hundreds of families already scarred by the illness live in fear that their child will be removed from their care.

Chief Executive Mary-Jane Willows said they have seen a dramatic rise in calls from parents this year. “Most families feel under threat at some point and that is hugely significant. Just one threat is one too many. Hauling families through child protection proceedings on the basis of unfounded threat just adds to fear and anxiety for these families.”

Suffering in silence

Mrs Willows admits that there could be a future case where an allegation is genuine but to date the vast majority of allegations are misplaced. While the number of cases that result in a child protection order is small, the impact on families is devastating. In the last year a national support worker for AYME has prevented ten child protection orders in more than fifty cases and thirty nine are ongoing; that’s fifteen percent of 350 members who have the severe form of the illness under threat. And it’s families in Scotland who are suffering in silence.

“The reported incidents are the tip of a much bigger iceberg. We know there are hundreds of families that don’t get in touch so their struggles are hidden. Those families who do get in touch from Scotland want to keep quiet. They don’t want to make a fuss because they feel the level of risk of child protection proceedings is high,” said Mary-Jane.

AYME says there is a serious lack of support and awareness about ME in Scotland. There are 25,000 children with ME in the UK and over 4000 in Scotland; thousands are undiagnosed and unsupported. Numbers appear to be rising.

Children face difficulties in diagnosis, present with a range of complex symptoms and are isolated from school life and friends. The first ever biomedical research into ME in children published last year by the University of Dundee concluded that the physical symptoms of ME in children can be just as disabling as multiple sclerosis. The child’s quality of life is considerably worse.

Yet according to AYME and other ME charities families often encounter doubt from medical and education professionals that their child’s condition is genuine. Jane Colby from the Young ME Sufferers Trust (TYMES), a former head teacher, said misconceptions about the illness in education and primary health care must be addressed.

“Professionals often think of it as a psychological problem, prescribe the wrong treatments and make the child worse. Then families are accused of causing the damage, it’s ghastly. We made clear recommendations for social services to be alerted by the Government many years ago but so far no action has been taken.”

Do it, or else

Fifteen year old Leanne Murray has severe ME and struggles with a range of unpredictable symptoms of ME including nausea, muscle pains, post exertion fatigue and light sensitivity.

When Lorraine took her to hospital with chest pains, doctors said there was nothing they could do. Leanne was sent home with no treatment and the consultant reported her mum to social services.

A week later a social worker arrived on their doorstep in Coatbridge. Now the family fear taking their daughter to hospital again.

Leanne was terrified by the experience. “I am used to doctors not believing that ME is a real illness. But that was really frightening. It was bad enough they did nothing to help me. It was worse knowing what they had done afterwards.”

The social worker didn’t see a need to proceed with the case but the family was distraught. Lorraine, who also suffers from ME, said the family have dreaded medical appointments since they were threatened for the first time with child protection last year, after removing Leanne from a physical exercise programme.

“We are sure the physiotherapy made her worse. But they were saying do it, or else. When a professional is threatening you, you are scared to talk to anyone. The consultant wrote to our GP and said if I remained resistant to his approach, I should be spoken to by child protection.”

Patient choice

The Chief Medical Officers in England and Scotland both concede that disagreement about a child’s treatment is not sufficient grounds for child protection. Dr Nigel Speight, retired paediatrician and medical advisor to the TYMES Trust has over twenty years experience working with children who have ME. He has represented families in twenty three child protection cases across the UK and regularly comes to Scotland to support families.

“Professionals must realise that parents have the right to make decisions about whether to undertake treatments that can be responsible for marked deterioration in severe cases,” said Dr Speight.

There is no evidence to prove that any particular management approach is more effective. Dr Speight added, “If the child has a confirmed diagnosis and the family wants to manage the condition by pacing the child or young person’s activity at home, rather than the clinician’s preferred management programme, they are still in need of support, not persecution.”

Veiled threats

One mum we spoke to was blackmailed into withdrawing a complaint about their paediatrician. Claire* has been threatened with child protection services and accused of damaging her son, Neil, for attention.

Her thirteen year old son Neil* was diagnosed with ME at age ten and now he rarely gets out of the house. He weighs just over six stone. Claire said the attitudes of hospital consultants changed after she removed Neil from a prescribed exercise programme which she believed caused him to relapse.

“The doctor asked me what I thought social workers would say if they found out I had got him a wheelchair. Then a consultant asked me if I had heard of Münchausen by proxy.”

Claire was advised if she withdrew the complaint about the consultant the family would not be referred to child protection services. “We agreed because we were so afraid of what could happen if we didn’t.”

Despite the severity of Neil’s physical symptoms, Claire said doctors show a lack of understanding of how ME affects children. “A consultant recently told him he couldn’t be tired when all he had done was to sit in a car to come to the hospital. They often present it as a psychological problem.”

A spokeswoman from the Royal College of Paediatrics and Child Health said, “Every case needs to be considered on its own merit and individually. The same threshold for referral to children’s social care exists for a child with an underlying illness as for a child without an underlying illness.”

*This family asked us not to use their real names

5 thoughts on “‘Parents of sick children living in fear’ – Newsnet Scotland, 20 January 2011”

  1. “We are sure the physiotherapy made her worse. But they were saying do it, or else. When a professional is threatening you, you are scared to talk to anyone. The consultant wrote to our GP and said if I remained resistant to his approach, I should be spoken to by child protection.”

    Rather reinforces the need for change as suggested by the preceding article.

  2. ME Association, can we do a nationwide GP education campaign? Are there published clinical papers about the effects of excercise? I am becoming concerned that the PACE results are going to be controversial because of the delay.
    I remember reading that Dr Charles Shepherd had done some experiments on muscles of CFS patients. Is there a clinical paper on this? If not could the ME Association fund a study?
    Drs appear to not accept current ME/CFS studies because they are not published in reputable places like the BMJ.
    If studies were published in the BMJ then more Drs would accept them as fact, all we have at the minute are print outs from random websites which GPs scoff at.

    1. The PACE trial has already been shown to be flawed, and not about ME only fatigue. The MRC and Government appear to not care about this one bit.

      There are plenty of papers looking at a range of areas, that show why GET is dangerous to ME patients. It’s not the journals they are published in or who publishes them that is the problem, but why the medical establishment deliberately denies their existence.

      The research into MRV retroviruses is about to really explode, and these people will not know what has hit them.

  3. The legal rights of patient choice are ignored by these ‘professionals’.
    They try everything to get well, children want to be ‘running around’ again. The advice may be for activity management, pacing, try GET “as long as it’s what she feels she can manage and is happy with”. this is done and tried repeatedly. Then when the medical targets (be it getting into school, or time frame for being ill) are not met, then it is the youngsters fault, the family’s fault, it must be psychological, refer to social services, suggests the ME Consultant. Yes there are differences (however veiled) between ME Consultants views of this illness.

  4. I agree Yeld.

    It is so difficult to assess the situation from the outside when ‘they’ feel that they such interference is warranted.

    Until a specific cause can be identified and the diagnosis and ‘treatment’ regimen becomes more specific and some sort of national protocol agreed, then sufferers will always be at risk of these interventions.

    This article whilst raising concerns about children diagnosed with ME/CFS can just as easily be applied to sufferers of other illnesses whose treatment remains unspecific and unquantifiable.

    Once again we are subjected to estimates of numbers possibly effected – I have asked AYME for confirmation of their figures. Until we can obtain a necessary specific set of statistics from the NHS and other government organisations as to the numbers of those diagnosed with ‘our’ illness, then how can anyone assess properly the social implications?

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