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Huntington's Chorea

Volume 981: debated on Tuesday 25 March 1980

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asked the Secretary of State for Social Services (1) if he will ensure that all pregnant women who are known to be at risk of passing on Huntington's chorea are given prenatal screening tests;(2) if he will implement the recommendation of the Office of Health Economics to set up a single service agency to span the gap between residential and community care for those suffering from Huntington's chorea; and if he will make a statement;(3) how much Her Majesty's Government have provided towards research into Huntington's chorea in 1978–79;(4) what is the estimated cost per year of caring for patients suffering from Huntington's chorea.

I have just received a copy of the booklet "Huntington's Chorea" published earlier this month by the Office of Health Economics (OHE) and have studied it with interest. However, as the OHE fully appreciates, it would be unrealistic to expect recommendations with financial or manpower implications to be implemented until the general economic situation improves. In the meantime, the Department is continuing to encourage close liaison between health and local authorities—both of which may provide various forms of community and residential care for this group—about the provision of services for all severely physically and mentally handicapped people.The degree of disability of people suffering from Huntington's chorea varies greatly, as does the need for and cost of services. These needs are best met from a wide range of integrated services, including residential care. As the statistical data collected on the cost of providing the range of relevant services are not analysed by reference to specific diseases, it is not possible to say how much money is spent annually on helping sufferers.Within the limits of current medical knowledge, there is no test that can determine if a person with a family history of this condition is in fact a carrier of it, and there are no prenatal screening tests for the disease. The only present means of reducing its incidence is genetic counselling of potential carriers with a view to ensuring that they are fully aware of the risks attendant on their having children. Such counselling is available under the NHS through general practitioners, who may refer any patient needing expert advice to specialist genetic advisory centres.This Department and the Department of Education and Science are funding research by the Medical Research Council. As my hon. Friend the Under-Secretary of State for Education and Science explained on 14 February—[Vol. 978, c.

764–5]—the council estimates that the relevant parts of a wider research programme cost approximately £30,000 in 1978–79. In addition, this Department provided £5,537 towards a study of the disease in South Wales. Further research has been supported by Government funds in universities and medical schools, but details of expenditure in 1978–79 are not available.

The Department also supports the work of the Association to Combat Huntington's chorea and during the last two years has given it an annual grant towards general administrative expenses. The grant is being increased to £15,000 for 1980–81.