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40 families reported to social services after GP disputes

Discussion in 'General ME/CFS News' started by Min, Sep 28, 2014.

  1. Min

    Min Guest

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    Article in today's UK Sunday Times, unfortunately the rest of it is behind a paywall:

    "UP TO 40 families have been investigated by child protection officers because they disagreed with doctors about the diagnosis and treatment of children with myalgic encephalopathy (ME), also known as chronic fatigue syndrome, according to a leading paediatrician.

    Nigel Speight, a paediatrician and adviser to the Tymes Trust (The Young ME Sufferers Trust ), said: “I know of 35 to 40 families abused in this way. I am getting more cases all round the country. It is easy to blame the social workers but I blame the doctors. If the doctors got it right, the social workers wouldn’t be involved.

    “Doctors are failing to diagnose ME, through neglect, ignorance or cold feet because it is controversial. There are perfectly good Nice [National Institute for Health and Care Excellence] guidelines telling every GP how to diagnose it"




    http://www.thesundaytimes.co.uk/sto/news/uk_news/Society/article1464782.ece






     
  2. Wildcat

    Wildcat

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    http://www.meassociation.org.uk/201...-disputes-the-sunday-times-28-september-2014/



    [​IMG]
    ’40 families reported to social services after GP disputes’ | The Sunday Times | 28 September 2014
    [​IMG]
    Arron and Lewis Sleep were referred to social services

    From The Sunday Times, 28 September 2014. Story by James Gillespie.

    UP TO 40 families have been investigated by child protection officers because they disagreed with doctors about the diagnosis and treatment of children with myalgic encephalopathy (ME), also known as chronic fatigue syndrome, according to a leading paediatrician.

    Nigel Speight, a paediatrician and adviser to the Tymes Trust (The Young ME Sufferers Trust ), said: “I know of 35 to 40 families abused in this way. I am getting more cases all round the country. It is easy to blame the social workers but I blame the doctors. If the doctors got it right, the social workers wouldn’t be involved.

    “Doctors are failing to diagnose ME, through neglect, ignorance or cold feet because it is controversial. There are perfectly good Nice [National Institute for Health and Care Excellence] guidelines telling every GP how to diagnose it.”

    About 250,000 cases of ME have been diagnosed in Britain, 25,000 of which are children. Symptoms include insomnia, debilitating exhaustion, joint and muscle pain, stomach problems and poor memory.

    Sophie Sleep, of Lipson, Plymouth, said her two sons, Lewis, 18, and Arron, 14, who suffer from ME, were referred to social services “behind her back” in March 2011. She was accused of suffering from Münchausen’s syndrome by proxy, where a parent invents an illness in their child.

    Sleep said that during a doctor’s appointment, they were told if they did not follow recommendations “then possibly it would go down the child protection route”.

    Doctors wanted to admit Lewis, whose condition had worsened despite being put on an exercise regime, to hospital for physiotherapy and to monitor his sleeping, but his parents believed both could be done at home. “You want the best for your children. It’s not being obstructive or difficult,” said Sleep, who was visited by social workers in May 2011. “It was very stressful. It was awful. We are all still very raw from the experience.”

    Social services eventually decided that Sleep’s sons were not at risk and she did not suffer from Münchausen’s.

    In another case, Coby Lord, 13, from Barnoldswick, Lancashire, was referred to an ME facility in Liverpool against the wishes of his family, who thought the unit took too much of a psychiatric approach. Social services were alerted and the family feared he would be taken into care.

    His mother, Louise Lord said: “It was horrendous; we didn’t sleep for months. They were accusing me of making up the illness.”
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    Social services concluded there was no risk to Coby.

    Matthew Tomlinson, Lancashire county council’s cabinet member for children, young people and schools, said: “If our children’s services are informed of concerns about the wellbeing of any child . . . they are legally obliged to look into them. Our staff handle inquiries as sensitively as possible.”

    Plymouth city council said: “Our advice and assessment service screens referrals and where a young person or child is considered ‘in need’ we carry out an assessment to help identify resources to meet those needs.”
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  3. Min

    Min Guest

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    Thanks wildcat
     
    Wildcat likes this.
  4. user9876

    user9876 Senior Member

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    Given recent reports about social services failing kids being abused in care it should be noted that doctors reporting ME cases are taking SW away from other issues.

    CHAD teams have social workers to support sick and disabled children and can be very good.
     
    Gingergrrl, ahmo, Dolphin and 4 others like this.
  5. Wildcat

    Wildcat

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    'Doctors wanted to admit Lewis, whose condition had worsened despite being put on an exercise regime, to hospital for physiotherapy and to monitor his sleeping, but his parents believed both could be done at home. “You want the best for your children. It’s not being obstructive or difficult,” said Sleep, who was visited by social workers in May 2011. “It was very stressful. It was awful. We are all still very raw from the experience.” '


    The erroneous and damaging idea that people with ME need to exersise more has become even more entrenched in the UK, and has received so much publicity in the UK national media since the PACE Trial was reported as 'proving' that ME sufferers just need more exersise and 'psychotherapy' (CBT).
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    Last edited: Oct 1, 2014
    ahmo, Min, justy and 4 others like this.
  6. Wildcat

    Wildcat

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    Last edited: Oct 3, 2014
  7. Wildcat

    Wildcat

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    Links to Guidelines for Parents, Professionals (Doctors Teachers, Social Workers) and Reports by Jane Colby and the Tymes Trust (The Young ME Sufferers Trust, ME Children’s Charity).

    http://www.tymestrust.org/
    http://www.tymestrust.org/tymespublications.htm



    Including:

    A Good Practice Guide to Education for Children with ME

    For GPs, schools and families. Includes Statement on Virtual Education by Jane Colby at the House of Lords.



    Child Protection Issues

    A presentation to the All Party Parliamentary Group on ME. 2008.


    Revisiting the 2002 Department of Health Report on CFS/ME

    Excerpts from the Children's Chapter of the Chief Medical Officer's Working Group Report, with sections on Education and Child Protection. We hope this information will assist families, doctors and teachers.



    The Forgotten Children - A Dossier of Shame

    Tymes Trust presented this document to the Prime Minister on the 12th of May 2003. It details shocking statistics the Trust has collated from information supplied by families of children with ME.


    Succeeding with ME

    The "virtual classroom" revolution. Learn at home whilst interacting online with a teacher and other pupils. How the Tymes Trust/Nisai Education partnership formed in 2004 can help children with ME throughout the UK.


    Our Needs Our Lives

    What young people with ME and their families want from a CFS/ME clinic - results of a detailed survey conducted by the Trust. We hope that this report will help you lobby for the services you need in your area.

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    Last edited: Sep 28, 2014
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  8. snowathlete

    snowathlete

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    The work done by TYMES trust on this has been excellent. The situation would be unthinkably worse if not for them.
     
    Last edited: Sep 28, 2014
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  9. worldbackwards

    worldbackwards A unique snowflake

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    Is there any indication as to why The Times group have so wildly (if welcomely!) changed their tune in the last few years?
     
  10. Esther12

    Esther12 Senior Member

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    Different people with different views. I think science journalism in the UK is particularly bad and other areas are more likely to be sceptical and aware of problems with abuses of power.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I totally agree.

    In the US, there are children physically and sexually abused every day especially in foster care and not enough social workers to investigate these cases. I can't speak for the UK, but to pull social workers from real abuse cases to investigate parents who are trying to stop their ill children from being further harmed by GET is appalling.
     
  12. Min

    Min Guest

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    The article does not mention is the scandal of the clinics' massaging their recovery rate figures by rediagnosing children who do not recover as having 'pervasive refusal syndrome' when their symptoms of myalgic encephalomyelitis remain unchanged.
     
    Last edited: Sep 30, 2014
  13. Wildcat

    Wildcat

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    Statement by Jane Colby, Director of the Tymes Trust. 29 September 2014:


    ‘Tymes Trust Executive Director Jane Colby was as usual on the panel at MEA Question Time last Saturday 24 September, hosted by OMEGA in a lecture theatre at an Oxford college.


    One issue discussed at length was the erroneous social services investigations of families whose children have ME, often sparked by schools or doctors. The number of families we have assisted in this respect is now up to 125. So far none of these families have been found guilty of anything.

    Commonly, such cases are sparked by paediatricians wanting to impose graded exercise or physiotherapy and school attendance. They often seem convinced that such methods will work, and will effect an improvement. They do not accept it at face value when parents say that these management regimes make their children worse and withdraw them from the regime, requesting home or virtual tuition, as is their educational right. Suspicions then arise, social services are informed and have to investigate.

    From the Trust's point of view, this was a valuable event because not only were we able to supply information in reply to a wide variety of questions, but we also met a number of parents who gave us good feedback. Thanks to all of you for your encouraging words about our work.’



    https://www.facebook.com/tymestrust?fref=ts
    Tymes Trust FB Page, recently set up.

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    Last edited: Oct 2, 2014
    Valentijn and Min like this.
  14. Wildcat

    Wildcat

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    2001 Daily Telegraph Article about how the Children’s Act ‘is being misused to accuse innocent parents [of children with ME] of seriously harming their sick children and to enforce potentially harmful treatment on their children without parental consent.' Article by Margaret Mar, Deputy Speaker of the House of Lords.




    ‘How the law is being abused to force treatment on children’
    By Margaret Mar

    11 Jul 2001

    ‘ONE of our most important laws, the Children Act 1989, is being misused to accuse innocent parents of seriously harming their sick children and to enforce potentially harmful treatment on their children without parental consent. When it comes to these children being taken into council care, the parents' fundamental liberty to bring them up is being denied.

    The children in question are often severely disabled by an illness for which science has yet to find a cure - myalgic encephalomyelitis (ME), often bracketed with chronic fatigue syndrome (CFS). When questioned, the Department of Health acknowledges both the seriousness of the illness and the lack of effective treatment for it.

    In practice, the department ambivalently turns a blind eye to its own officers who, without hard evidence, blame parents for their child's illness and invoke child protection law. Apart from anything else, this is a breach of a family's right to a private life under the Human Rights Act 1998. Sometimes children are taken away from parents and subjected to often futile cognitive-behavioural therapy and physical exercises.


    In the cases to which I refer, social workers use their powers under Section 47 of the Children Act to conduct one-sided investigations into families; to hold secret meetings; and then to convene benign-sounding "conferences". In fact, these conferences decide whether a child is placed on the child-protection register, as a first step towards care proceedings. To parents who have been gulled into believing that social workers are there to help them and their children, these proceedings seem like kangaroo courts.

    Government guidance expects the chairman of such a conference to be independent and objective. However, it is not unknown for the chairman and the person who initiated the proceedings to have discussed the case beforehand. Biased opinion and hearsay are presented as evidence. Accused parents are denied a real opportunity to present their case. Medical evidence that counters the need for protection is disregarded.

    Parents' right to a second medical opinion is not on the agenda, even though this is contrary to General Medical Council guidance and the recommendations of the Butler-Sloss inquiry. Members of the conference both give evidence and vote. It is almost a foregone conclusion that the child will be put on the at-risk register, with the added threat of a care order if the child protection plan and medical recommendations are not complied with.

    Parents are made to feel they are guilty until proved innocent, and are denied any opportunity to prove their innocence. These families are abused by the system set up to prevent abuse. A sense of injustice haunts them.

    In the process, child protection records are retained, but access to them by the parents is denied. This makes complaints procedures unworkable. One parent in South Wales has been trying for 11 months to get access, under the Data Protection Act, to relevant social services and medical files from Cardiff and Vale NHS Trust. Important documents continue to be withheld.

    Innocent families say that their telephones and letters are being intercepted, even though this can be done only with the permission of the Home Secretary. The purported basis for this injustice against parents is Section 47 of the Children Act, under which a local authority has a duty to investigate when it has "reasonable cause to suspect that a child is suffering, or is likely to suffer, significant harm". For a care order to be made, two criteria must be satisfied: that the child is suffering significant harm, or is likely to suffer significant harm, and that the harm, or likelihood of harm, is attributable to unreasonable parental care.

    Once child protection proceedings have started, a family can be subjected to months of court hearings. The inexorable momentum leading to a care order is difficult to reverse. Family proceedings are behind closed doors; there are no effective means of challenge; and an emergency protection order can be obtained within an hour by a social worker applying to just one magistrate, outside court hours.

    Whenever presented with evidence of the parents' innocence, social workers resort to "moving the goalposts". Allegations are changed during the proceedings. So, parents who have provided an alternative competent medical opinion on their child's illness are then steered away from the issue of medical treatment to other concerns.

    Are doctors and social workers losing sight of the law? In the case of ME, the "significant harm" criteria cannot be attributed to parental actions or lack of care. Therefore the case is not within the remit of the Children Act. To accuse parents of abuse, on the evidence of ME, is a misdiagnosis and distressing for the families. The whole thing is tragic, because professionals are operating out of a feeling of duty and in what they see as the best interests of the child.

    There is, though, a possibility of judicial review of such cases. In 1998, a family with a child with ME, under the care of his GP and a consultant paediatrician, sought judicial review of decisions (by the consultant community paediatrician and social services) to use child protection procedures to overrule the child's doctors' advice.

    The case was argued on the basis that the original court that ordered treatment should have prescribed it only in accordance with a competent body of opinion. In an illness where there is not a generally agreed method of treatment (and given that the child is already following competent medical advice), it is outside the remit of the Children Act for the court to enforce alternative advice.

    In the case in point, a court order was made (with consent of all the parties in the case) declaring that, "B's parents have a right to give or withhold consent to elective forms of medical treatment in respect of B". Is it not time for doctors and social workers to stop using care orders as a back door to enforce medical treatment on children with ME?’



    The Countess of Mar is a Deputy Speaker of the House of Lords

    http://www.telegraph.co.uk/comment/...ng-abused-to-force-treatment-on-children.html

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