Intended for healthcare professionals

Letters

Diagnose and be damned

BMJ 2000; 320 doi: https://doi.org/10.1136/bmj.320.7240.1004 (Published 08 April 2000) Cite this as: BMJ 2000;320:1004

Corroboration is important when children's illnesses are diagnosed

  1. Derek Pheby, director (Derek.Pheby{at}uwe.ac.uk)
  1. Unit of Applied Epidemiology, University of the West of England, Bristol BS16 1QY
  2. 6 Melville Court, Clayton, Newcastle-under-Lyme, Staffordshire ST5 4HJ
  3. 4 Rawden Place, Riverside, Cardiff CF11 6LF
  4. King's College Hospital, London SE5 8AF

    EDITOR—Marcovitch's arguments about treatment of the chronic fatigue syndrome (myalgic encephalomyelitis) in children are illogical.1 He writes of the “hatchet job” performed by Panorama in the programme of 8 November and refers to the Washington Post's policy that news requires corroboration.

    One of the responses to his article, by Wessely [published here, p 1005], states, “contrary to the message of the programme, the management of chronic fatigue syndrome in children is not contentious.”2 In referring to a case reported by Panorama Marcovitch states that “parents' views and those of the local medical team were in conflict.” Yet the programme made clear that the dispute was between the parents supported by their own medical advisers and the local medical team, so perhaps there is greater disagreement than has been asserted.

    Marcovitch discussed at length Munchausen's syndrome by proxy; Panorama labelled one of the cases of myalgic encephalitis as being a case of this syndrome. No one likes receiving emotional, intemperate outbursts, even from people who think they have been wrongly accused. But what is sauce for the goose is surely sauce for the gander. Even doctors sometimes make mistakes, yet Marcovitch disregards the possibility that parents, knowing themselves innocent, may feel themselves to have been receiving exactly the same type of vituperative attack that he objects to when doctors are on the receiving end. Such allegations turn on fact rather than clinical opinion so should be subject to Marcovitch's own test of corroboration.

    Innocent people are made angry by accusations that, if made without justification in any other context, could end in High Court actions for defamation. They often react vigorously to them, to give paramount importance to the interests of their children and to preserve the integrity of their families. Clinical opinion may be highly speculative in nature. Yet alone of professionals, some doctors seem to regard their opinions as paramount, even when they fly in the face of the facts. Lawyers may form professional opinions about cases but expect to see them challenged during legal proceedings. Journalists, as Marcovitch himself has suggested, should seek corroboration of their views.

    Much heat could be taken out of the situation if some doctors approached the care of children with myalgic encephalomyelitis with greater humility and understanding. They should attempt to build the type of partnership with parents that is clearly best practice and in line with the intentions of legislation on child care.

    References

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    Doctors must remember their rights and obligations to infants and children

    1. Carl Henshall, parent/carer (carlhenshall{at}netscapeonline.co.uk),
    2. Deborah Henshall, parent/carer
    1. Unit of Applied Epidemiology, University of the West of England, Bristol BS16 1QY
    2. 6 Melville Court, Clayton, Newcastle-under-Lyme, Staffordshire ST5 4HJ
    3. 4 Rawden Place, Riverside, Cardiff CF11 6LF
    4. King's College Hospital, London SE5 8AF

      EDITOR—Marcovitch's article on doctors who have exposed cases of child abuse is unfair.1 The NHS inquiry into some of the work carried out by the department headed by Professor Southall was set up to investigate concerns with research that we had raised through our member of parliament. To date no one has been able to refute our allegations or alleviate our concerns. All our evidence is written by the researchers themselves, and we have never accused any clinician of anything we could not substantiate.

      The complaint about continuous negative pressure ventilation has never been a campaign directed at Southall or child protection issues. We have attacked a system that allows maverick clinicians to conduct research in an ungoverned manner and the culture of subterfuge that surrounds the gaining of consent and the patient information given. We have attacked the handling of complaints and the attitudes of the trusts, which close ranks.

      Doctors should be accountable for their actions and should be able to justify their decisions to their patients. Patients are often forced to look to the media to expose their plight because of the lack of cooperation and misleading information from the trusts.

      The Guardian was probably the only newspaper to write an article based on the BMA's and Southall's press release about a campaign to obstruct his child protection work2 —the other newspapers realised its inaccuracies. The Guardian quickly made a public apology after publishing the article, and the BMA, which also published it,2 is considering its position after we suggested that Southall's statement in the press release could be libellous.

      If Southall had made it clear to Channel 4 that he could not discuss the use of continuous negative pressure ventilation before the broadcast, why did he then proceed to answer questions around the issue? He was not obliged to and could have refused. Indeed, his own hospital was not happy that he should be involved with any media that pre-empted the various inquiries about research in general and more specifically his own work.

      Marcovitch ends by saying that it is time the profession hit back. Surely now is the time for the medical profession and the public to work together. Scandals have evolved because of self regulation and damage limitation. This outdated “them and us” attitude has no place in a modern system of public involvement and working in partnership. Openness, transparency, and accountability are the only way forward.

      References

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      Inquiry should be held into doctors involved in child abuse investigations

      1. Brian Morgan, freelance journalist (brianmorgan{at}btinternet.com)
      1. Unit of Applied Epidemiology, University of the West of England, Bristol BS16 1QY
      2. 6 Melville Court, Clayton, Newcastle-under-Lyme, Staffordshire ST5 4HJ
      3. 4 Rawden Place, Riverside, Cardiff CF11 6LF
      4. King's College Hospital, London SE5 8AF

        EDITOR—Since the publication of Marcovitch's article on doctors who have exposed child abuse1 and my initial electronic responses to it (published here, in the following cluster)2 there have been several developments. Professor Southall and Dr Samuels (one of his colleagues) were suspended without prejudice during investigations into their child protection work.3 The expert opinion given by Professor Sir Roy Meadow in a murder trial was criticised by colleagues, 4 5 and concerns are to be incorporated into an inquiry into Munchausen's syndrome by proxy by the Royal College of Paediatrics and Child Health (L Tyler, secretary of the college, personal communication). The BMA's press release6 was withdrawn. With inquiries under way Marcovitch might have been wiser to wait rather than to offer hostages to fortune.

        Marcovitch claims that doctors who work with cases of child abuse are being hounded. But most doctors work unobtrusively, and without generating complaints, to protect children from abuse within the framework laid down by parliament after the “Cleveland scandal,” when child abuse was reported in Cleveland. He should ask why a very small proportion of doctors—paediatricians for the most part—have exposed themselves to sustained complaints. The answer is that they would not accept after the Cleveland scandal that child protection was a multiagency task and that doctors must not use untested diagnoses before they had been accepted by the profession.7 The diagnosis that has led to so much reaction—Munchausen's syndrome by proxy—may at last be given proper scientific review.

        When Marcovitch says: “Southall…has received threats of violence, and…his charity's equipment has been destroyed. There is, however, no evidence to link this darker side of campaigning to Morgan or the public faces of the movement…” I have to speculate that the second sentence was inserted on legal advice, because what follows (“Surely Channel 4 News, the Sunday Times, the Independent, and others have been barking up the wrong tree. The real story is what drives Morgan and others like him, how the ‘loose network’ is funded, the backgrounds of its supporters, and whether its campaign has destroyed some children's protection”) suggests that there is after all a sinister side.

        Marcovitch's suggestion is a two edged sword; he and the colleagues he defends must submit to an investigation as well. I would welcome an inquiry by the health select committee into the part played by paediatricians and child and adolescent psychiatrists in child abuse investigations in the decade after the Cleveland scandal. The inquiry should also look at the quality of evidence given by medical experts behind the closed doors of family courts in secret proceedings under the Children Act 1989.

        References

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        Management of CFS in children is not contentious

        1. Simon Wessely, professor of liaison and epidemiological psychiatry (s.wessely{at}iop.kcl.ac.uk)
        1. Unit of Applied Epidemiology, University of the West of England, Bristol BS16 1QY
        2. 6 Melville Court, Clayton, Newcastle-under-Lyme, Staffordshire ST5 4HJ
        3. 4 Rawden Place, Riverside, Cardiff CF11 6LF
        4. King's College Hospital, London SE5 8AF

          EDITOR—I congratulate Marcovitch on his exposition of the methods used by some activists to hound those paediatricians who are prepared to consider that parents do not always act in the best interests of their children.1 He draws attention to an edition of Panorama on the equally contentious subject of the chronic fatigue syndrome in children. This was a particularly biased and pernicious account of an area where balance and reason are needed, not polemic and distortion.

          Contrary to the message of the programme, the management of the chronic fatigue syndrome in children is not contentious. Programmes of rehabilitation rather similar to those now shown to be effective in adults—including some form of support, encouragement, behavioural management, and activation—are now the mainstay of treatment in virtually all centres helping children with the syndrome and their families. Indeed, it is hard to find dissenting voices in the professional literature.

          Such programmes, including the one run at King's College Hospital, necessarily involve collaboration, not confrontation, with both the child and the family. Colleagues and I will shortly be presenting an uncontrolled case series, adding to the literature showing both the effectiveness and the acceptability of such approaches. We have just started a randomised controlled trial as part of the normal process of showing efficacy in the most scientific fashion.

          Any parent who watched the one sided Panorama programme might be forgiven for thinking that management of the chronic fatigue syndrome in children involves coercion and the courts and might be discouraged from seeking help. Of course cases of parents harming their children—even, occasionally, with good intentions—do exist. Some appear nowadays under the guise of the chronic fatigue syndrome or bizarre allergic disorders,2 and when a doctor believes that this is happening he or she has statutory duties to fulfil. But such cases are fortunately extremely rare—we have not yet encountered such a problem at King's—and tell us little about the general management of the syndrome.

          References

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