They also told the BSE Inquiry in London of callous treatment at the hands of coroners, doctors and funeral directors immediately after the victims' deaths - and in some cases the cause is still not recorded as Creutzfeldt-Jakob Disease (CJD). Lack of co-ordination may also have slowed significantly the identification of the emerging disease, suggested one family.
Clare Callaghan, whose husband Maurice died in November 1995 of the "new variant" of the disease (nv-CJD) - caused by eating BSE-infected food - broke down as she said: "We live with this every single day. Not enough is being done to help people like me, parents who constantly face the possibility that it could strike again. I couldn't cope with going through that again."
Mrs Callaghan has a young daughter: "I still don't know what to tell her when she asks why her father died. How do you explain to a six-year- old it was because of meat?"
Anthony Bowen, whose son Anthony was born by Caesarean section three weeks before his wife Michelle died of the progressive illness, said: "I live with the prospect that my son may succumb to nv-CJD by maternal transmission. I could still lose my three children to nv-CJD."
The cause of Mrs Bowen's death is still listed as "bronchial pneumonia, dementia and kidney failure", though Mr Bowen is trying to have it changed to nv-CJD.
David Churchill, whose son Stephen was the first to die of nv-CJD in May 1995, aged 19, told the Inquiry that if neurologists and hospitals had shared fully the news of the unusual case, the fatal illness could have been identified three months before the March 1996 Government announcement.
"Our understanding is that the National CJD Surveillance Unit knew of five cases, but because of medical protocol, they couldn't intrude," he said.
Gerard Callaghan, brother of Maurice, said the family was prevented from holding a traditional wake with an open coffin. Instead, local health officials "policed" the burial of the lead-lined coffin in a grave dug almost twice its usual depth, and filled with quicklime to destroy the body.
"We tried to register the death and were told that the coroner would not accept `dementia' as a cause of death in a 32-year-old," he said.
Other families described similar struggles with officials. At the inquest of Alison Williams, who died in February 1996, the coroner described fears that nv-CJD was caused by eating infected food as "imaginary" and remarked: "It has reached the stage where, by calling oneself a doctor, you could say that eating lettuce causes CJD."
Frances Hall, whose son Peter died aged 20 in February 1996, did not receive a death certificate until August because the coroner refused to accept that CJD could be the cause.
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