Register of Victims

To date, the Department of Health has refused to make CJD a notifiable disease. Spongiform disease is notifiable in cattle, cats, pigs and chickens. And, of course, it is imprinted in the minds of most medical students and nurses that the likes of AIDS and hepatitis must be reported immediately. But, at present, there is no obligation on a doctor to report suspected CJD cases to the CJD Surveillance Unit in Edinburgh.

The advantage of making CJD notifiable would be considerable. Not only could the sufferers and their families be afforded immediate and appropriate support. The public would no longer be kept in the dark as to the true extent of the CJD problem. As things stand, there is good evidence that many CJD cases are being misdiagnosed, and that others are being misclassified.

With your help, I would like to compile a register, region by region, that would give a more accurate picture of CJD in the UK. The usual, first symptoms of CJD rang from memory loss and dementia clear across to loss of balance and shaking. If you would like to tell me of a friend or a relative whom you suspect is showing signs of CJD, please contact me by e-mail or fax. No information would be made public without your express approval.

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