Huntington's Chorea (Hansard, 7 August 1980)

§ Mr. Ashley

asked the Secretary of State for Social Services (1) whether his Department has taken any action to ensure that 282W general practitioners are informed when it is known that one of their patients is at risk of developing the disease Huntington's chorea; and what efforts are being made to ensure early diagnosis whenever practicable;

(2) whether there has been any specific attempt to ensure a follow-up by social workers and general practitioners of those suffering from Huntington's chorea and those at risk of developing the disease;

(3) whether there are any special units or consultants with a particular interest in Huntington's chorea;

(4) whether any special efforts are made to ensure that patients suffering from Huntington's chorea are enabled to stay at home for as long as possible prior to permanent hospitalisation; and if there is any provision for day, weekend or holiday relief for families of sufferers;

(5) if he will ensure that in-patient admissions for those suffering from Huntington's chorea should be available when it is necessary that the number of emergency situations is reduced;

(6) how many patients suffering from or carrying the disease of Huntington's chorea have received genetic counselling; and if any steps have been taken to encourage doctor-initiated genetic counselling;

(7) if he will list the centres where research which might be relevant to the early diagnosis or treatment of Hunting-ton's chorea is being carried out; and if he will give the nature of the research, the cost, the source of funding and the date the research is expected to be completed;

(8) if he will take steps to identify those who are at risk of being carriers of the gene of Huntington's chorea, whilst at the same time ensuring confidentiality; and if he is unable to accede to this request, if he will give the reasons for not doing so, distinguishing between those arising from cost and those based on other factors;

(9) what advice his Department has given to general practitioners on the nature, management and implications of Huntington's chorea; and what advice general practitioners are receiving from other sources.