Select Committee on Science and Technology Written Evidence


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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