Select Committee on Health Minutes of Evidence


Memorandum by Mr David Thrower - continued

AUTHOR OF MEMORANDUM OF EVIDENCE—DAVID THROWER

  13.  The author of this Memorandum of Evidence is the father of a child, Oliver Thrower (born April 1987), who degenerated into autism in the period following vaccination with monovalent measles vaccine in 1988, and further degenerated following MMR in 1991. He holds professional qualifications in transport planning and town and regional planning.

OLIVER THROWER

  14.  Oliver Thrower, born 12 April 1987, received monovalent vaccination in June 1988, and degenerated afterwards into autism. He further received MMR vaccination in April 1991, and degenerated more deeply into autism. This has been the subject of correspondence with the Department of Health and other organisations.

  15.  Details of Oliver's degeneration into autism following both measles and MMR vaccination are included as Appendix 1. Oliver was completely healthy prior to vaccination. It is emphasised that it is the underlying principles that are at issue, not the details of Oliver's personal case.

THE WAY ADVERSE OUTCOMES ARE INVESTIGATED

Introduction

  16.  The debate between parents of children who degenerate into autism (or other serious conditions) in the weeks and months following measles or MMR vaccination, and the authorities that regulate health at Government level, appears to be a battle between many "Davids" (the parents) and a handful of "Goliaths".

  17.  The struggle to interest the authorities in a suspected and apparently widespread syndrome of adverse consequences is an unequal one in logistical terms, with well-resourced public bodies lined up against individual parents with few skills or resources to call upon. The inequality of the struggle that parents have, such as when they try to investigate their child's degeneration following vaccination, includes:

    —  most parents have no detailed medical knowledge in the medical area concerned;

    —  few parents understand the machinery of health regulation, or of Goverment generally;

    —  probably only a minority of parents are sufficiently vocal to fight their child's case beyond one or two letters, if that far;

    —  few parents have the time, resources or skills available to mount a determined investigation over several years as to what has happened to their child; and

    —  all parents are already by definition in difficult circumstances, struggling to care for their child and to sustain family life, often with inadequate support and poor sleep.

FORMAL AIMS AND OBJECTIVES OF THE DEPARTMENT OF HEALTH

  18.  The Department of Health has formal aims that should, if observed, be of benefit to parents investigating an adverse outcome, but these do not appear in practice to influence actual Departmental behaviour.

  19.  An important starting-point is a quote from the NHS Executive:

    "Purchasers and providers . . . (and presumably the NHS at headquarters level?) . . . should have regard to the Children Act, the UN Convention on the Rights of the Child, and the Patients' Charter, including the primacy of the interests of children in enabling them to enjoy the highest attainable standards of health (and) protection against negligent treatment" (source: Child Health In The Community—A guide To Good Practice, published by the NHS Executive, September 1996, page 8).

  20.  The Department sets out its relevant aims and objectives in the Department's website (only those that are pertinent to the responsiveness to parents of children that have degenerated into autism are quoted here):

    "The Department of Health's overall aim is to improve the health and wellbeing of the people . . . by supporting activity at national level to protect, promote and improve the nation's health . . . We shall do this by . . . providing accurate and accessible information on how to reduce the risk of illness, disease and injury . . .

    The Department of Health is committed to making progress in a way which. . . is responsive to the views and preferences of parents, clients and their carers (my emphasis).

  21.  It is suggested that the responses that I have received as a parent during the period 1997-99 is in breach of the spirit, and possible even the letter, of the aims and objectives quoted above. The Department of Health, specifically the section that deals with vaccination, appears to be unaware of its own corporate aims.

  22.  The patients that have suffered a suspected adverse consequence to medical treatment, such as vaccination, lack a "champion".

23.  Issues for Discussion

    —  how can the balance of resources, between the Department refuting parents' claims and the parents making the claims of an adverse outcome, be made less unequal?

    —  are some of the Department's activities and attitudes, in practice, in breach of its formal aims? How can the formal aims be reinforces and applied?

    —  who/what can act as a "champion" for children believed to have suffered adverse outcomes?

24.  Suggested Recommendations for Action

    —  Improve parental resources by provision of "advice packs" setting out how they can representations, how to present their child's detailed circumstances, etc;

    —  reinforce the aims of the Department and independently verify that they are being applied; and

    —  identify a "champion" for suspected adverse outcome victims, preferably a new Office of the Health Regulator based upon a greatly-strengthened Health Ombudsman function, that can investigate the Department if necessary.

Legal Duties of Public Bodies

  25.  Public bodies such as the Department of Health are governed by a number of legal requirements. If the department does not take seriously the representations made to it, which would seem to potentially include repeated reports of a syndrome of adverse medical outcomes, of if it gives excessive weight to evidence that is favourable to its stance, and irrationally disregards evidence presented to it that is unfavourable to its viewpoint, then it could be in breach of the law.

  26.  There is also a law against showing bias. The Department of Health, due to its being in charge of the vaccination programme, has a clear direct interest in the outcome of its own decision-making process. This suggests that the Department should not be the ultimate arbiter in its own affairs, particularly where it has a direct partnership involvement with the regulated sector, and that there is a need for an independenthealth regulator to govern this, and possibly other, areas of activity. At present, the Department appears to demonstrate bias in its actions (this is explored in later sections), and it is suggested that this too could be illegal.

  27.  A note on the broader legal aspects in relation to the legal duties of the Department of Health and other Government agencies to investigate parents' concerns is attached as Appendix II.

  28.  Parents such as myself feel that there is a need for independent regulation or audit of the Department's actions where its own reputation or interests are at stake, or where the law may be being breached.

THE DEPARTMENT OF HEALTH AND RESEARCH

Introduction

  29.  The issues surrounding vaccination and vaccine safety are extremely complex, and there are very major gaps in research. Research into this this area is still at an early stage. However, some research that is now available does suggest that the two conditions are linked. Space does not permit these to be set out at length, but in view of the bearing that available research has on the concerns of parents, and the way these concerns are not being properly investigated by the Department of Health and others, references to key papers are included as an appendix.

  30.  It has yet to be resolved conclusively, one way or the other, as to whether vaccination can potentially damage a child and render them in an autistic state.

  31.  Examples of references to recent research that are suggestive of there being a link between vaccination and degeneration into autism, or are relevant to the possibility, are attached as Appendix III.

NHS RESEARCH PROGRAMMES

  32.  The Department of Health does not operate a research grant scheme. Although the Department has a budget for research, the Policy Research Programme, it is directed at the formulation of Government Health and Social Services policy, and is usually proactive in commissioning research rather than responsive to grant applications. The main agency through which the Government supports biomedical and clinical research is the Medical Research Council.

  33.  It is a primary source of concern that the UK Department of Health does not appear to be making any endeavour to explore the large vacuum of research in these areas.

  34.  In February 1999, the Minister of State confirmed in correspondence to Helen Southworth MP that there have been just two projects under the Physical and Complex Disability Programme of the NHS Research and Development programme:

    —  "Long Term Outcome In People With Learning Disabilities"; and

    —  "Auditory Integration Training For Autism; Effects On Harmful and Stigmatising Behaviours".

  35.  For the NHS Policy Research Programme, the position is even more inadequate: the Minister confirmed that the Programme is not currently funding any research projects at all that specifically address autism. The last project to be funded was as long ago as 1993. The Policy Research programme does fund a small programme of research (four studies) on learning disability, and there has been a study, "Predicting Future Trends In Severe Learning Disability," which included autistic disorders.

National Research Register

  36.  The National Research Register confirmed the following:

    —  "Autistic Children And Music Therapy", ended 3/97.

    —  "Collaborative Molecular Genetic Study Of Autism", ended 3/98.

    —  "The Diagnosis Of Spectrum Disorders" ended 3/98.

    —  Evaluation and Employment of the Coding For Active Sociability In Pre-Schoolers With Autism Schedule", ended 4/98.

    —  "Autism" (report dissemination), ended 4/93.

    —  The Efficacy Of Classical Homeopathic Treatment In Reducing Anxiety Levels In Autistic Children", ended 9/95.

    —  "The Psychiatric Assessment Schedule For Adults With A Developmental Disability", ended 8/94.

  37.  The Department explains its lack of research by stating that it does not offer a research grant scheme, and that the NHS R&D programme is managed largely through NHS regional headquarters. This approach seems neglectful in the context of the Department's stated aims, and its pivotal role in setting priorities for improving child health.

  38.  The passive Department of Health approach is summed up in a quote from an Annex to the letter of 1 February 1999 from the Minister, Tessa Jowell:

    "The national priorities for R&D are set on the advice of the Central Research and Development Committee and expert advisory groups . . . Regional R&D Directorates then take the lead for managing specific programmes of nationally-funded R&D on behalf of the NHS. Calls for proposals are made in the national press . . . Regions also have their own programmes of research . . . It is therefore more appropriate for researchers to discuss their interests and any specific proposals with their Regional R&D Directorate, rather than with the Department of Health."

  39.  The above mechanism seems to leave much of the initiative to the regions, and even to researchers themselves, and also appears to enable the NHS at headquarters level to disengage itself from any hands-on involvement in triggering research into the cause of autism.

  40.  The Department's failure to commission research could be explained in terms of lack of resources. However, if autism and associated disorders are running at a rate of 1 in 200 children under 16 (the rate quoted by the National Autistic Society), or the almost as high rates quoted by some Health Authorities, then the wider costs of autism to the community must be very great.

  41.  This would appear to be an area where "joined-up government" is needed, where expenditure by the Department of Health, on researching the incidence and causes of autism, would be more than offset in the longer term by reductions expenditure on support by Social Services and upon special educational resources by the Department of Education and Employment. But there is no evidence that such a broader approach is being taken.

  42.  To parents, the failure of the Department of Health to actively seek to ensure funding of research into the incidence and causes of autism is inexplicable.

Research Grants To The National Autistic Society

  43.  The Department of Health has made a number of grants to the National Autistic Society, but these have all been for non-controversial projects, and are not related to investigating the causes of autism. Recent grants have been:

    —  £40,000 in 1993-95 for accrediation monitoring and review for education and care services;

    —  £10,000 in 1993-94 for staff training;

    —  £30,000 for implementing and monitoring the effects of legislation;

    —  £20,000 in 1994-95 on the use of physical restraint in response to violent behaviour;

    —  £10,000 in 1995-96 for investigating options for specialist support to families;

    —  £4,000 in 1995-96 for an awareness leaflet;

    —  £30,000 in 1996-97 to promote awareness and develop strategies;

    —  £30,000 in 1996-97 to identify and publicise good practise in services; and

    —  £8,000 in 1996-97 for staff development.

  44.  The above confirms that parents of children that have degenerated into autism following vaccination have very strong grounds for concern that the Department of Health is showing the most minimal interest in researching its causes.

  45.  In suggesting possible topics for future research, the following is directly quoted from Barbara Loe Fisher, a US campaigner on behalf of parents:

    —  research to evaluate the impact over time of repeatedly manipulating the human immune system with single and multiple antigens;

    —  research to assess whether vaccination in conjunction with antibotic use and exposure to environmental toxins makes children more vulnerable to new and more virulent viruses and bacteria, or more prone to adverse events from vaccines or infections;

    —  studies to investigate the possible link between vaccination and learning difficulties or attention deficit disorder;

    —  studies to investigate the possible link between vaccines and autism; and

    —  studies that will on a continuing long term basis scientifically re-evaluate each of the vaccines currently being given to children, including their growth media, adjuvenants, preservatives and additives, and studies to screen out children at high risk.

46.  Issues For Discussion

    —  is the Department acting outside the law in its failure to systematically and proactively investigate the claims of parents?

    —  how can the Department's actions be independently audited?

    —  how can the research programme be initiated, and then accelerated?

    —  could increased finance for research in the long term be offset by reduced funding for care and education, as a result of identifying causes and reducing incidence?

47.  Suggested Recommendations For Action

    —  there needs to be a mechanism for summarising the law in relation to the Department's actions towards parents and "uncomfortable" research findings, applying it, and auditing compliance;

    —  the Department's approach to research should be reviewed, and funding increased; and

    —  an across-the-board interdepartmental review needs to be made in relation to autism research and the costs of dealing with autism ("joined-up Government").

THE DEPARTMENT OF HEALTH AND "EVIDENCE"

Introduction

  48.  The debate over vaccination and its possible linkage with autism has been fought out over quoted references to published articles, not all of these peer-reviewed. The key concerns are that there appears to be every attempt being made to play-up the degree of evidence against any link, to play-down the evidence for a link, and to present uncertainty either way as being a case of "there is no evidence for a link", or "vaccination is safe".

    "The fact that there is no evidence of harm does not mean that something is safe" (Dr Vivienne Nathanson, Head of Policy, British Medical Association, speaking on genetically modified foods, 21 May 1999).

Parental Evidence

  49.  The starting point for this section is that there may have been a fundamental failure by the Department of Health to differentiate between typical, or "Kanner's" autism, and a typical or regressive autism and childhood disintegrative disorder, where a child not only degenerates suddenly into autism, but acquires bowel problems, gut permeability and multiple food allergies and hyperactivity.

  50.  Parents have an extremely powerful experience to hand, that of witnessing their child's degeneration or other adverse event. They know what their child was like before, they know what it was like afterwards, and they personally witnessed the change in between.

  51.  For many parents, even without understanding the epidemiology, they are convinced that there has to be some association. Children do not suddenly lose skills and regress, in a matter of a few weeks or sometimes even less, without good cause. The question is, what is the cause, and if there are concerns about prior vaccination, it rapidly becomes a problem of interesting and convincing highly sceptical authorities. There are few experiences more frustrating than being sure that there has been a problem, but finding that no-one believes you.

  52.  Parents' representations appear to be highly unlikely to comprise systematic misunderstanding. They appear to offer consistency and are obviously based directly upon close first-hand personal observations. The medical community has occasionally acknowledged the solidity of parental observations:

    "The parents proved to be extremely reliable informants" (source: Measles Mumps Rubella Vaccine Induced Subacute Sclerosing Panencephalitis, Journal of the Indian Medical Association, November 1997).

    "Over 200 (parents) had come forward . . . The reports I heard were plausible" (source: Professor Richard Moxon, Professor of Paediatrics, Oxford University).

  53.  Parents assessing whether the Department of Health is investigating their child's degeneration into autism in an impartial and open-minded way are very aware that there is still only limited evidence to support their view that autism was precipitated by vaccination and gut permeability. But there is some evidence, and there is also a body of scientific investigation that points in the direction of there being a link between vaccination and a range of forms of serious damage.

  54.  There are two issues that are central to the debate as to whether the parents view, that their child has degenerated into autism following vaccination, or the Department's view, that there is no evidence of any link between vaccination and autism:

    —  firstly, what precisely constitutes convincing "evidence"?

    —  secondly, how is evidence that suggests there is a link weighed against a larger body of "evidence", but mainly from earlier years, that there is not?

  55.  The Department also clearly misjudges the capabilities of parents to compare notes with other parents, obtain information and home in upon the key issues. It also fails to appreciate that, complex though the subject is, parents will follow research closely, attend research conferences and gradually obtain a sound grasp of what is affecting, or has damaged, their child. An example of the way the Department sees parents is again revealed in the letter of 10 October:

    "We are very aware of the adverse reporting in newspapers and on televison which MMR vaccine has received . . . It is especially distressing that much of the reporting has been factually wrong and has clearly given a misleading impression."

  56.  The parents are well beyond the point of relying on "impressions" from "misleading" reporting, and those that have repeatedly raised their concerns with the Department, have based their representations upon published scientific papers and upon logical arguments, and with an open-mindedness that the Department clearly does not fully share.


 
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