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Split posts - ME cases treated as suspected child abuse in the UK

Discussion in 'General ME/CFS News' started by Wildcat, Jul 25, 2011.

  1. Wildcat


    Jane Colby, Director of the Tymes Trust UK ME charity for children and young people, states here that there are 68 recent child protection investigations of families of children with ME.

    No case has ever been proved against families of children with ME. Following posts explain the context of these misguided investigations

    Twitter. 12 July Jane Colby, Director of the Tymes Trust ME Childrens Charity:

    Jane Colby:

    Another Child Protection case 2day. Had 68 recent ones - 100% innocence. Will pursue this injustice. Reviewing older cases. #CFS #tymestrust
  2. Wildcat


    All Party Parliamentary Group on ME Minutes of the 22 June 2011 meeting

    Speakers: Jane Colby, (Executive director, Tymes Trust, ME Childrens Charity) & Mary-Jane Willows, CEO, Association of Young People with ME (AYME)

    Key points from the discussion were as follows:

    Dr Jane Colby comes from a background of being a head teacher for many years, was a GPs wife, and has M.E. In 2010,The Tymes Trust won the Queens Award for Voluntary Service.

    The main concern under discussion today is the number of families of children with M.E. who are investigated on suspicion of abuse without reasonable evidence to suspect this is the case. Misunderstanding of the symptoms of M.E. sometimes lead to the mistaken belief that neglect or abuse is taking place. Jane illustrated these concerns with several examples.

    Mary-Jane Willows told the Group that she is currently supporting 56 crisis cases on behalf of AYME.

    AYME is calling for:
    a directive to be issued by the Royal College of Paediatrics and Child Health (RCPCH) that all paediatricians should follow the Colleges guidelines when treating children and young people with M.E.

    All GPs and paediatricians to receive training about M.E. o All parents under suspicion of putting their child at risk to be informed of their rights in writing and given details of organisations who can support them. o The cost of pursuing these cases to be investigated as a matter of urgency.

    A discussion and question and answer session followed:
    The Countess of Mar made the point that when an investigation is initiated because of a suspicion that parents are abusive, even if no evidence is found, this information will be kept on their records permanently.

    The Chair asked whether this problem only occurs in England. Jane Colby replied that this is the case across the UK.

    Ian Swales MP quoted from the Tymes Trust 1report on Child Protection issues and commented that it was striking that no case of abuse against the parents of a child with M.E. appears ever to have been proven.
  3. Enid

    Enid Senior Member

    Thanks for posting Wildcat, I'd no idea this was still going on in the UK - terrible for them. Good to see the All Party Parliamentary Group is so very active. (Countess of Mar has been tireless for years)
  4. Wildcat


    A Presentation to the All Party Parliamentary Group on ME (2008)

    Jane Colby
    Former Headteacher
    Executive Director, Tymes Trust (The Young ME Sufferers Trust)

    Joanna Smith
    Welfare Rights Advisor, Brunel University

    The Young ME Sufferers Trust
    Registered Charity 1080985
    Founder Patron : Lord Clement-Jones CBE


    On 2nd July 2008, Jane Colby and Joanna Smith gave presentations by
    invitation of the All Party Parliamentary Group on ME on Child Protection
    Issues, covering Child Protection procedures and recommendations,
    misunderstandings over parental or carer influence, and the personal
    experiences of a parent of a Tymes Trust member.
  5. Wildcat


  6. Wildcat


    The 1999 Panorama Survey and programme in conjunction with the Tymes Trust

    The 1999 Panorama Investigation Sick and Tired

    ME children treated as mentally ill

    Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E.

    An exclusive survey for the BBC's Panorama programme found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.

    Children suffering from chronic fatigue syndrome (CFS) are being pressurised into having psychological treatment which may not be appropriate, according to a BBC survey.

    Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E. (myalgic encephalomyelitis), and it is recognised by the Department of Health.

    However, doctors are divided on how it should be treated and many do not accept that it exists.

    An exclusive survey for the BBC's Panorama programme found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.

    In a disproportionate number of cases, doctors had suggested that the children's parents had Munchausen's Syndrome by Proxy - a condition which causes parents to harm or fake symptoms of illness in their children in order to gain attention.

    Some who had opposed psychological treatment for their children had been threatened with having them taken into care.


  7. Wildcat


    (Please Note. The extracts below are from a longer debate in the House of Lords. I have Posted only the sections that explain the background and the speech that relates how the subject affects families of young ME sufferers. Also I have put in paragraph breaks to make it a bit easier to read. The whole of the Debate is on the link)

    October 2001. House of Lords Debate about false accusations of child abuse, and misuse of Child Protection Law.

    The debate introduced by Earl Howe who outlined the two triggers for investigations of families: the first a phenomenon known as recovered memory, the second, the condition known as Munchausen Syndrome by Proxy or MSBP. MSBP is one of a number of terms used to describe the fabrication or deliberate creation of illness in a child by a parent or carer.

    Speeches by Earl Howe (edited, as indicated) and by the Countess of Mar with particular reference to MSBP investigations of families of children with ME.

    Hansard. Lords. 17 Oct 2001

    Earl Howe rose to call attention to the damage caused to families by false accusations of child abuse; and to move for Papers.

    The noble Earl said: My Lords, the abuse of children, whether violent, sexual or emotional, is a criminal and wholly repugnant act. As a society it is incumbent upon us to do all that we can to protect children from such abuse and to ensure that the perpetrators are dealt with in an appropriate fashion.
    17 Oct 2001 : Column 646
    Nothing I am about to say should be interpreted as a desire to underplay or belittle such conduct. Indeed, quite the contrary.

    My concern can be summed up very simply. It is that alongside the worrying numbers of genuine child abuse cases there is a parallel cause for worry, which is that many innocent people are being wrongly accused of child abuse and whose lives in consequence are being turned upside down without due justification.

    I should like to talk today about two of the triggers for false accusations. The first one is a phenomenon known as "recovered memory"..

    ..I come now to the second major trigger for false accusations that particularly concerns me, and that is the condition known as Munchausen Syndrome by Proxy or MSBP. MSBP is one of a number of terms used to describe the fabrication or deliberate creation of illness in a child by a parent or carer.

    In the first type, a parent--most often the mother--invents an account of illness in the child, for example by reporting falsely that the child is suffering from chronic diarrhoea. Often this leads to the child being subjected to a range of unnecessary clinical tests. In the second type, the parent is claimed to have deliberately induced illness in the child, for example by poisoning. Again a referral to a doctor often leads to extensive clinical tests which are necessary only because of the parent's interfering actions. MSBP therefore encompasses a wide range of behaviour, from an excessively anxious parent inventing an illness or exaggerating quite minor symptoms, right through to inflicting deliberate physical harm.

    The danger of such a broad spectrum of behaviour being packaged into a single portmanteau term, MSBP, is that in the hands of those who are not sufficiently trained or experienced to know better, it is a label that is all too easily applied without due care. This is all the more true when one considers the so-called profile of characteristics that are said to mark
    17 Oct 2001 : Column 648
    out a person suffering from MSBP. These characteristics include such things as privation during childhood, repeated bereavement, miscarriage, divorce and past health problems. An over-intense relationship with the child and a desire to be the perfect parent are other supposed markers.

    Regardless of the fact that there are very many perfectly innocent, sane people around who might have such characteristics, the very idea of a tell-tale profile of this kind is an open invitation to apply the MSBP label without properly looking at what may or may not be happening to the child. Put at its simplest, there is all the difference in the world between a Beverley Allitt, whose severe personality disorder led her to murder young children, and a mother who invents reasons why she and her child should visit the doctor. Yet under the all-embracing banner of MSBP, and in the hands of the untrained, the two are treated as being practically indistinguishable. It does not matter whether one calls the condition "MSBP" or "factitious illness by proxy", or by any other name. The point remains the same.

    In quite a number of the cases I have encountered, when an allegation of MSBP has been made, the mother, in protesting her innocence, has pointed to unexplained symptoms or behaviour in her child. She may have raised her concerns about these with the doctor on more than one occasion. Unfortunately, the act of denial is itself seen as a marker of MSBP--a "Catch 22" if ever there was one. But the danger of having, as it were, an identikit profile of an adult considered likely to be an abuser or potential abuser is that judgments can be made too much by reference to perceptions of the parent and not enough--sometimes not at all--from a proper and thorough examination of the child.

    I have been made aware of cases where MSBP has been alleged without any outward sign whatever of harm to the child, beyond some odd or atypical behaviour. Often, the allegations have been pursued doggedly by social workers over a long period, and it is only after months of anguish, when children have been placed on the "at risk" register and proceedings have been brought in the family courts, that the parents have been completely exonerated--exonerated, that is, if they are lucky; but exoneration, when it comes, is frequently by way of a specialist diagnosis of an unobvious clinical condition in the child: a congenital disorder, a birth injury, an allergy, autism, Asperger's syndrome, an adverse reaction to a vaccine, attention deficit and hyperactivity disorder, chronic fatigue syndrome, and so on..

    If MSBP is a valid term at all, it identifies what
    17 Oct 2001 : Column 649
    amounts to a serious psychiatric disorder. That kind of diagnosis should be left to those who are properly trained to make it; namely, qualified psychiatrists.

    We should remember that all the indications from research are that MSBP is very rare. But it is worth noting that the scientific basis for MSBP as a recognised condition is, at best, thin. As a theory it rests on a small number of anecdotal cases. It has never been tested under clinical conditions and none of the evidence has ever been approved by a national medical or scientific body. Even the connection with the Beverley Allitt case turns out on investigation to be illusory. An official inquiry into the Allitt case rejected any association between MSBP and the murders that Allitt committed. Despite that, the supposed relationship between the homicidal Allitt and MSBP has remained firmly embedded in the public consciousness.

    None of this is to deny that there are people who intentionally set out to inflict harm on children in a covert fashion. Where real physical harm is inflicted secretly on a child there is no difference between this type of violence and any other sort. The point, however, is that before jumping to conclusions about MSBP, social workers and doctors ought to look at what is actually going on, or not going on. They should investigate the family's circumstances in the round, including all relevant medical information, in a professional, informed and unbiased manner. They should carry out an assessment of the family's needs in accordance with Section 17 of the Children Act. Quite often, that process is hardly even attempted.

    The damage that can be done by the mere suggestion of MSBP is enormous. Chinese whispers begin--what one researcher has referred to as "the first gossamer breath" of rumour--about unexplained illness in a child and about a fussy parent. These can swiftly turn that parent into a potential murderer in the eyes of the community. Members of the family become local pariahs. Social workers are sometimes not clever at handling situations of this kind. Children are made to live in constant fear of being parted from their parents. The climate is like that of a witchhunt in which the voice of reason and all sense of proportion is lost.

    There is a considerable weight of published research on these matters. It is this that gives me good grounds for believing that we are dealing with a substantive problem. In that context, the Government's recent consultation document on safeguarding children in whom illness is induced or fabricated, despite some laudable features, is deeply flawed--principally because it fails almost wholly to acknowledge that the topic is highly controversial and that erroneous diagnosis is a real risk.

    There are several lessons to be learnt from the points I have outlined. Clearly, lessons need to be learnt about the training of social workers, and about making it far more skills-based than at present. There is a good case for making social workers personally and legally accountable for what they do. Presently--perhaps uniquely among professional people--they are not.
    17 Oct 2001 : Column 650
    There is a need to improve the monitoring and inspection of social work and the ways in which resources are directed by social services departments. The channelling of considerable resources into chasing the falsely accused and the pursuit of flimsily based allegations have the effect of removing resources from where they are really needed; namely, in the active prevention of real physical violence, such as was inflicted on Victoria Climbie. We need to consider whether the rights of parents to present evidence at child protection conferences should be strengthened in some way. We should attempt to determine whether the complaints system is adequate in cases where a number of agencies, not merely the NHS or social services, are involved. There is also a need to examine the law: for example, to ensure that it is the duty of local authorities, in the first instance, to help and support families in difficulties. Somehow we need to strike a better balance.

    I hope that the Government will take these issues in hand and examine them seriously. It is a subject which a Select Committee, either in this House or in another place, could examine to advantage. Having made a personal study of these matters, I believe them to be of deep significance for the well-being of countless children and families up and down the country. My Lords, I beg to move for Papers.

    17 Oct 2001 : Column 660

    The Countess of Mar: My Lords, I am grateful to the noble Earl, Lord Howe, for introducing this debate. I echo all the condemnation of actual abuse of children. I declare an interest as patron of a number of ME associations. I shall restrict my remarks to children suffering from ME. My sister is a social worker, but I have not involved her in any of my parliamentary work.

    I first became involved in the subject three years ago. I was approached by a paediatrician who was very concerned about the wellbeing of a boy who had been diagnosed with ME. I shall not go into detail because, as I have been told repeatedly, Ministers cannot intervene in individual cases. Time is also restricted.

    Like the noble Earl, I have had a large number of letters from parents and grandparents accused of child abuse. Their children or grandchildren have been put on the "at risk" register, taken into care or made wards of court. What I read and have been told profoundly distresses and disturbs me. I am reminded of the witch hunts of previous centuries. This time, the victims are frequently nice middle class families whose only fault is to be concerned about their child, who has ill-defined symptoms from which he or she does not rapidly recover. For various reasons, some social workers--I repeat that it is some, not all--are not prepared to consider that those conditions might be organic. Suspicion leads to referral, which leads to a huge investment in social services, health services and court resources. There is no presumption of innocence, as there is in other similar situations, and there seems to be no requirement for social services to prove guilt.

    A terrible injustice is done to the families involved. Virtually without warning, the parent or parents find that they have been unjustly and unnecessarily investigated under the child protection proceedings of Section 47 of the Children Act 1989. Somehow, the Act has been so misconstrued as to enable some social services departments, paediatricians and organisations such as the NSPCC to abuse their powers, through misplaced zeal and ideology or through sheer incompetence, to create tremendous distress and psychological damage to parents, children and the wider family, sometimes destroying
    17 Oct 2001 : Column 661
    the family structure. There is no measuring the levels of anxiety or the harm done to children and their carers while the whole weight of the law is brought to bear on them.

    Even when accusations of child abuse against a parent or parents have subsequently been withdrawn, often after prolonged and costly legal action, the stigma of being branded a child abuser by the local authority remains with the parents. Once a social services referral is placed on their Samson database, the details remain for ever, no matter what the outcome of later inquiries. The referral becomes common knowledge in the local community. Those who work with children, either as carers or teachers, are refused employment and those who have been active in the community or in voluntary work find that they are no longer required, especially if children or young people are involved.

    These are people who have been proved innocent, yet they are treated like criminals. What is more, their sentence never ends. Their child, who is wrongly perceived as having been abused, is pitied. Parents are afraid to seek medical treatment for themselves or their children. If they are brave enough to go to the doctor, their complaints are often dismissed as somatisation.

    I know that many social workers, doctors and voluntary workers do wonderful work with seriously deprived children and their families. I know that they bridle against the incompetence of a small number of their colleagues. We need to think again about what we expect from social workers and to ask whether we are expecting too much. The communal hysteria that is generated around child abuse must have an effect on those who work with children. Are we being reasonable in our expectations? I think that perhaps we are not.

    When I originally asked for an inquiry, I had no idea that the problem was so widespread. I am grateful that the Minister in another place has agreed to meet me with some of the parents concerned, but I fear that that may not resolve the problem. There is a need for an inquiry to resolve the problem, even if it is a Select Committee inquiry, as the noble Earl has suggested. Abused parents need to be able to tell their stories. Solutions need to be sought and these dreadful injustices must be put right as far as possible. There needs to be a cleansing.


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