APPENDIX 20
Memorandum from Focus UK
1. I am writing on behalf of the UK branch
of Focus Families, which is a support group for parents and carers
of children with the developmental disorder, Septo Optic Dysplasia.
As a group we are very concerned about the proposal from the Medical
Research Council to close the National Institute for Medical Research
on its Mill Hill site and move its scientists into Central London.
As parents we understand more than most the value of basic research
into the causes and impacts of the many debilitating and sometimes
crippling developmental problems which our children suffer. It
is crucial to support the best medical scientists who work with
our doctors to improve the understanding of these disorders, and
to develop better approaches to prevention, diagnosis, and treatment
for our children.
2. The scientists and doctors at this prestigious
Institute are conducting cutting-edge research on the understanding
of the fundamental processes of life and the basis of diseases.
They have long term links with the best medical specialists in
many different hospitals in London, throughout the UK, and abroad.
They have made unique discoveries on the genetic basis of rare
brain, eye and growth disorders, and their discoveries have a
continuing and developing impact on the health of our children.
The Institute also provides a wonderful training environment for
the next generation of clinical scientists, where young doctors
can learn the latest research techniques and apply them directly
to medical problems such as those affecting our children. We see
the expansion of the medical knowledge base surrounding these
disorders is vital to facilitate early diagnosis and treatment
which can mitigate the long-term impacts of the condition.
3. Having reviewed the publicly available
information on this proposal, it is very disturbing to learn that
all the scientists at Mill Hill and their clinical colleagues
feel that the case for closing the Institute and rebuilding a
new one in central London has not been properly established. It
appears that an objective review of the background to and reasons
for the proposal is vital, to ensure that the grounds for the
proposal are based on achieving real scientific benefits rather
than merely financial savings. The MRC have already spent a lot
of money on the proposal which it could be argued would have been
better spent on research. Although we are not experts, it is worrying
that the MRC's relocation proposal appears to ignore the opinions
of the large majority of the UK biomedical community, who favour
maintaining the Institute at Mill Hill.
4. We are also very concerned because this
move could disrupt or even restrict the ongoing research on which
our hopes for our childrens' future health depend. In the case
of Septo Optic Dysplasia, the hope is for this research to identify
and prevent this disorder occurring in future generations. The
NIMR has excellent facilities and expertise for creating and studying
animal models of human diseases, which have proven critical for
discovering and evaluating the developmental processes that sometimes
go wrong, as in our children. These and other facilities attract
top scientists and doctors from all over the world to work at
the Institute. We support the view of these scientists that it
is neither appropriate, nor value for money to destroy these facilities
at Mill Hill, only to try to recreate them in central London.
Many of these scientists are internationally renowned, and if
the MRC tries to relocate them against their better judgement,
many could be attracted to better facilities abroad, disrupting
the close clinical links they have developed in the UK. As a result,
our children will be the losers in the long run.
5. Given the costs to the public purse,
and the long-term impact of a wrong decision on medical research
in the UK, we think it vital that MRC listens to its staff who
are actually doing this work and the patients who are directly
benefiting and reconsiders the case for retaining and building
on the investment in this successful Institute at Mill Hill.
12 November 2004
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