The evidence given by 15 relatives from 11 families to the BSE inquiry yesterday offered few encouraging reports. John Williams was told by a neurologist that his daughter, Alison, had the inherited condition Huntington's chorea, which would have had health implications for the whole family. The neurologist insisted on this diagnosis for months, even as Alison was dying, and only admitted he was wrong after a post-mortem three weeks after Ms Williams had died.
In some cases, the relatives had to inform medical staff of the possibility that the victim had a form of CJD - and had only realised this possibilitybecause of media coverage.
Some families had consciously avoided beef because of the BSE crisis. "My son had been vegetarian since he was 15, but I stopped buying beef five years before, in the 1980s, when I heard about BSE," said Mrs Frances Hall, a nurse whose son, Peter, died in February 1996, aged 20.
"It was clearly a new disease in cattle, and it seemed a logical progression that it would go to other species," she said.
The levels of care also fluctuated widely, creating what David Body, a solicitor for the families, called "care by postcode". In some places, wheelchairs did not arrive until after the sufferer had died, or visiting nurses refused to help, apart from delivering bedding supplies. Essential items to make a bed safe took weeks to arrive - and then came separately.
One family found that in moving from Lincolnshire to Kent, the quality of care plummeted as their requirements became entangled in red tape.
The low quality of diagnosis and care still persisted, despite the growing awareness of nv-CJD, the families claimed.
In written evidence, Arthur Beyless, whose daughter, Pamela, died aged 24 earlier this month, said that apart from a doctor from the National CJD Surveillance Unit in Edinburgh, "no one else talked to us about CJD and its implications on the sufferer".
The Beyless family, of Leicester, also found that "the Department of Social Services are entrenched in their rules: one of which is not to pay carers who live with those requiring care. Social Services are also governed by their dogma as to what their staff can and cannot do, and because of this they are quite impotent."
Yet the families' solicitors released yesterday a paper calculating that round-the-clock care - which nv-CJD patients need toward the end of their incurable illness, when they lose speech and muscle power and become incontinent - costs about pounds 40,000 annually.
The families will continue giving evidence today, in the sixth stage of the inquiry into the causes of the BSE epidemic that affected hundreds of thousands of cattle.
Gerard Callaghan, whose brother, Maurice, died in November 1995, said: "Today marks the point where the inquiry changes direction. If any group can claim ownership of this inquiry, we can."
Unanswered Questions: The Pain of Victims' Relatives
JOHN WILLIAMS is the father of Alison, who started showing unusual behaviour in the early 1990s.
"She used to be very active, liking sailing and walking and golf. Then she locked herself in her bedroom and wouldn't have anything to do with us. Her weight dropped. She entered a psychiatric wing of a hospital. But after a week they said it wasn't a psychiatric illness, it was physical. When the diagnosis came through, my GP said 'It's a tragedy. Her life expectancy is three to 12 months, and it will be horrific as a disease'. There was a social worker, but all she provided was incontinence pads."
FRANCES HALL is a nurse. Her son Peter died aged 20, one of the first victims of nv-CJD.
"The hospital had said it was a degenerative neurological condition. So I expected to lose Peter. But when it came to caring for him, he was a young lad: I didn't want a stranger changing his clothes, his bed. But it got so much more difficult when it got to the stage where we couldn't lift him up the stairs, or get him out of the bath because he was so frightened that he couldn't help himself.
By the time he went back into hospital most of his faculties had gone. He couldn't do much. He ... just smiled."
MARIE LAWRENCE learnt that her husband Michael Clifford had been diagnosed with nv-CJD while he was in hospital.
"I was told quite abruptly, quite coldly, by the ward nurse that I should find him other accommodation, that there wasn't anything they could do for him ... I didn't know it was a terminal disease; nobody told me. I got to the stage where I asked for help from social services at the hospital. But there was never anybody available to speak to me. The consultant [who made the diagnosis] wouldn't speak to me, avoided me like the plague. My GP was willing to help but the district nurses were ...always too busy."
ANTHONY BOWEN's wife Michelle died, aged 29, three weeks after giving birth. She began showing symptoms of nv-CJD while pregnant.
"We were going to take her to the neurologist for an appointment and we found that she had peeled all the skin off one foot ... We first mentioned CJD to [the neurologist]. I had read about three cases in the newspaper. His reaction? He was flummoxed ... They were umming and ahhing. I think it took them aback ... One doctor would be telling me she was going to die, another that she had something physical wrong. Finally Dr Martin Ziedler from the CJD Surveillance Unit came the day after our son was born."Reuse content