§ Mr. Ashleyasked the Secretary of State for Social Services (1) how much financial assistance has been provided to the Association to Combat Huntington's Chorea since its inception; and what further assistance he intends to give;
(2) if he will ask health authorities to notify him of all persons suffering from Huntington's chorea for whom they are providing residential care to assist the development of appropriate care and 668W build a greater knowledge of the disease; and if he will make a statement;
(3) what provision is made for medical specialists to deal with Huntington's chorea; and what counselling services are available in the United Kingdom;
(4) what action he is taking to reduce the incidence of Huntington's chorea; and if he will make a statement;
(5) what is his estimate of the number of people who suffer from the neurological disorder of Huntington's chorea; what is the percentage in each age band; and what is the number of people at risk of contracting the disease.
§ Sir George Young[pursuant to his reply, 19 December 1979, c. 268]: Estimates of the number of people suffering from Huntington's chorea in the United Kingdom range from 3,000 to 6,000. No estimates are available of the numbers in each age band but the first symptoms of disease usually occur in middle age and the majority are aged over 40. On this basis it can be estimated that between 15,000 and 30,000 people are at risk of developing the disease.
The symptoms and the progress of this hereditary degenerative disease vary greatly and the management and care of the patient and his family require a combination of many services, including residential care. The plan for each individual patient should depend on an assessment of his current clinical condition and social circumstances, not solely on medical diagnosis.
The Department is encouraging close liaison, through joint consultative committees, between health and local authorities both of which may provide residential care for this group, about the provision of services for all severely physically and mentally handicapped people. But it would be ethically unacceptable for health authorities to institute a register to record the names of patients suffering from this disease without stringent safeguards on confidentiality. It would also be necessary for all patients to give their informed consent before any attempt was made to include their names or those of their children in such a register.
This Department and the Department of Education and Science are funding research carried out by the Medical Research Council. A wide range of basic neurological work is being carried out 669W which could lead to greater understanding of the causes, natural history and medical treatment and management of this disease.
Within the limits of present medical knowledge, the only way of attempting to reduce the incidence of this disease is by genetic counselling designed to discourage known sufferers from having children. The effectiveness of counselling in these circumstances is still unproven but it is available under the NHS through general practitioners who will generally refer any patient who needs expert advice to the specialist genetic advisory centres. I am advised that such referral would be usual for patients suspected of suffering from or carrying this disease.
In 1978–79 this Department made a grant of £5,000 to the Association to Combat Huntington's Chorea towards general administrative costs and the salary of the national secretary. A further grant of £2,000 was made towards the staff costs of producing booklets and leaflets. The Department has also arranged for one of the association's booklets, which describes the genetics and natural history of Huntington's chorea, to be distributed to all regional medical officers and general practitioners and placed in the libararies of all postgraduate medical centres. In
1975–76 1978–79 Fees Expenses Fees* Expenses £ £ £ £ Medical Appeal Tribunals† … … 263,129 423,139 Mental Health Review Tribunals‡ … … 47,643 18,191 87,576 National Insurance Local Tribunals§ … … 165,424 33,961 269,462 68,434 Supplementary Benefit Appeal Tribunals … … 176,843 67,937 376,991 178,816 * 1978–79 figures include the employer's share of the national insurance contribution where appropriate. † Figures relate to Chairmen and Members. ‡ The figures for both years include a sum of £1,125 paid to Chairmen as retainer fees. Figures relate to Chairmen and members, and include expenses and compensation for loss of earnings for those attending before the tribunals. §Fees figure is for Chairmen alone. Expenses relate to Chairmen and members, including compensation for loss of earnings of members. || Fees figure is for Chairmen alone. Expenses relate to Chairmen and members, including compensation for loss of earnings of members; and the figure also includes the expenses of appellants and others required to attend before tribunals, and other miscellaneous expenditure. In addition medical boards in prescribed industrial disease cases and pneumoconiosis medical boards exercise appeal functions on diagnosis questions, but this takes up only a very small proportion of their time and a breakdown of costs is not available. Vaccine damage tribunals started to operate only during the current financial year.