Creutzfeldt-Jakob Disease (Hansard, 29 June 1992)

§ Mr. Hinchliffe
To ask the Secretary of State for Health ( 1) when her Department's survey into Creutzfeldt-Jakob disease will be published; and if this will be publicly available;
(2) how many cases of Creutzfeldt-Jakob disease (a) deaths and (b) patients were reported in the last year for which figures are available;
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(3) how many persons have died from Creutzfeldt-Jakob disease in the Yorkshire and Humberside area in the last two years for which records are available.

§ Mr. Sackville
I refer the hon. Member to the reply that my hon. Friend the Parliamentary Under-Secretary of State gave to my hon. Friend the Member for Torridge and West Devon (Miss Nicholson) on 23 June at columns155–56. The report from Dr. Will contains the relevant information requested on incidence in the Yorkshire and Humberside area.

§ Mr. Hinchliffe
To ask the Secretary of State for Health (1) how the information booklet, dealing with the cause and effects of Creutzfeldt-Jakob disease, has been distributed;
(2) how many booklets have been produced to inform relatives of patients suffering from Creutzfeldt-Jakob disease about the cause and nature of the condition.

§ Mr. Sackville
The information booklet "Creutzfeldt-Jakob Disease—A Guide" produced by the national Creutzfeldt-Jakob disease surveillance unit, based in Edinburgh, which is funded by the Department of Health and the Scottish Office Home and Health Department is distributed on a case-by-case basis to sufferers, their families, friends and carers. It has also been supplied to individuals who have written to the unit for more information.

§ Mr. Hinchliffe
To ask the Secretary of State for Health what processes are available to identify Creutzfeldt-Jakob disease in living individuals.

§ Mr. Sackville
Diagnosis of Creutzfeldt-Jakob disease in living individuals is by expert clinical assessment. There are no satisfactory tests that identify the disease conclusively, although electro-encephelographic testing can assist diagnosis. Histopathological testing of brain tissue can be used, very rarely, to confirm the diagnosis where there is a major doubt over the diagnosis.

§ Mr. Hinchliffe
To ask the Secretary of State for Health what information she has available to identify the cause of Creutzfeldt-Jakob disease.

§ Mr. Sackville
The cause of Creutzfeldt-Jakob disease (CJD) has not yet been identified. The agent of the disease appears to be small, atypical—compared to conventional microbes—and transmissible. There also seems to be a genetic influence on the development of the disease. The precise nature of the interaction between the host and the agent remains unclear, but there is considerable research under way both in the United Kingdom and abroad to elucidate the factors producing the disease.
Most cases are sporadic and the factors which cause illness in these cases are not fully understood. However, in a few cases certain routes of transmission have been identified involving the use of human dura, corneal grafts or human growth hormone, and the exposure of the contaminated instruments during neurosurgical procedures. The Department has taken action to ensure that any potentially infected human tissue is no longer used in medical treatment.

§ Mr. Hinchliffe
To ask the Secretary of State for Health (1) what action she will take to ensure that families with relatives suffering from Creutzfeldt-Jakob disease are provided with advice on the cause and effects of the disease;
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(2) what action has been taken to create a supportive agency in order to help patients' relatives where Creutzfeldt-Jakob disease is suspected to be the cause of illness.

§ Mr. Sackville
Clinicians are responsible for providing information to patients under their care and to their families. In addition, when the national Creutzfeldt-Jakob disease surveillance unit in Edinburgh is notified, the patient and family are visited and information is provided about the disease. The unit also provides advice on the cause and effect of the disease to family members, friends and carers at other times, and is available to provide more information on Creutzfeldt-Jakob disease to other people who have individual concerns.

§ Mr. Hinchliffe
To ask the Secretary of State for Health when procedures in neuro-surgery operations were altered in order to take precautions against contamination from agents causing Creutzfeldt-Jakob disease.

§ Mr. Sackville
Advice was first issued by the Advisory Group on the Management of Patients with Creutzfeldt-Jakob Disease to NHS hospitals in 1981. The guidance recommended that special precautions, including disposal of instruments, should be taken in surgical procedures involving the brain, spinal cord or eye. This advice remains current.

§ Mr. Hinchliffe
To ask the Secretary of State for Health (1) what information she has available to identify the number of Creutzfeldt-Jakob disease patients in(a) national health service hospitals, (b) private hospitals, (c) private nursing homes and (d) family homes;
(2) what provision is available within the national health service in order to treat Creutzfeldt-Jakob disease patients who suffer from the disease over a period of years.

§ Mr. Sackville
The national health service submits diagnostic information which would provide a broad estimate of the number of cases of Creutzfeldt-Jakob disease (CJD) which had been treated annually as in-patients in NHS hospitals. Information is not held centrally about the number of CJD patients in NHS hospitals, private hospitals, private nursing homes and family homes. Depending on their medical condition and personal circumstances, individual patients may be looked after in more than one location during the course of their illness.
Such patients have access to the full range of diagnostic and care facilities provided by the NHS.

§ Mr. Hinchliffe
To ask the Secretary of State for Health how many persons have contracted Creutzfeldt-Jakob disease who have not been treated with human growth hormone or involved in any neuro-surgical operations.

§ Mr. Sackville
It is not possible to determine causal or contributory factors in the majority of the 456 cases of Creutzfeldt-Jakob disease (CJD) identified since 1970. Of these, four are known to have had previous neurosurgery, which would not appear to be related to the development of their CJD, and a further 10 definite and one suspected case are known where transmission has occurred from other treatment.