The government was yesterday urged by its own MPs to set up a compensation fund for future victims of new-variant Creutzfeldt-Jakob disease (CJD) and the families of those who have already died.
A number of Labour back-benchers, concerned at the possible extent of claims from the families of future victims, have warned Yvette Cooper, the Public Health Minister, that it would be better to act voluntarily before circumstances forced such a fund.
For the first time, official figures showing the number of "probable" victims will be released next month on the orders of the deputy chief medical officer, Dr Pat Troop, after advice from the Spongiform Encephalopathy Advisory Committee, the Government's body on CJD and BSE (bovine spongiform encephalopathy).
The interim figures showthere are 12 living patients in the UK with probable CJD.More than 50 Britons have died of the disease so far but the true extent is unknown.
Following an announcement yesterday that tests have been established to diagnose the human form of BSE before the victims die, Dr Troop said: "Being able to count and record the number of living victims will allow us to make more accurate predictions about the future of this disease."
Mass screening is not planned and there is no test available to detect those who may be infected with CJD in the pre-clinical stage. "Developing such a test remains a research priority," Dr Troop said.
Victims have the debilitating disease, which has no cure, for an average of 14 months.
A cross-party delegation of MPs was told by the Public Health Minister that a coordinator was being appointed at the CJD surveillance unit in Edinburgh to provide expert advice to families and the victims. The MPs are campaigning for a £1m fund to be established at the unit to pay for support for the victims when they fall ill.
A Department of Health spokesman said: "There is a strong case for proper support for CJD sufferers and their families to be commissioned by local partnerships who are best placed to access local services and respond directly to theneeds and wishes of families."Reuse content