Memorandum by Mr David Thrower - continued
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.
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.
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
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 CommunityA 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
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.
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
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
"Autistic Children And Music
Therapy", ended 3/97.
"Collaborative Molecular Genetic
Study Of Autism", ended 3/98.
"The Diagnosis Of Spectrum Disorders"
Evaluation and Employment of the
Coding For Active Sociability In Pre-Schoolers With Autism Schedule",
"Autism" (report dissemination),
The Efficacy Of Classical Homeopathic
Treatment In Reducing Anxiety Levels In Autistic Children",
"The Psychiatric Assessment
Schedule For Adults With A Developmental Disability", ended
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
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
£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
£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
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
studies to investigate the possible
link between vaccination and learning difficulties or attention
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").
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).
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
firstly, what precisely constitutes
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.