The BSE link: 'My wife says it's like looking after a baby, but a baby grows'

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The Independent Online
Each case of 'new variant' CJD is a family tragedy, in which parents usually end up caring for the victims. Charles Arthur talks to one struggling parent

"Our basic concern is for Pamela. This news isn't going to help her. Anything which gets some help for her - that would be good news." For Arthur Beyless, yesterday's new scientific evidence about BSE and CJD will make little difference to the 24-hour routine of care which he and his wife June provide at their home in Leicester to their daughter Pamela, who will be 23 next month, if she lives that long.

Laboratory evidence is all very well; but what they want to know is, when will the health and social services recognise that this new disease affects people around the nation, and set up formal support for it?

"My wife often says it's like looking after a baby," said Mr Beyless, 50. "But of course a baby grows more capable with time." His pounds 12,000 annual income from his work as a self-employed milkman means hiring a nurse to help is not possible.

Pamela's life began to go awry last year. "It was about July of last year that she came up from her place in Southampton to visit us for the weekend. She was wondering how she would get her work done in her new job," Mr Beyless said. "She was working at Barclays Mercantile in Basingstoke, and they were giving her new tasks and she turned to us and said 'I just don't get it'. That wasn't right, for her to say that: she had always picked things up so quickly before. She should have been able to do it."

A month later, Pamela's company advised her to take sick leave. Arthur and June visited and discovered that her coordination was failing and her driving was becoming dangerous. Subsequently, v-CJD was confirmed in hospital by a tissue biopsy. In March Pamela was released from hospital into her parents' care. At the time, the specialists expected she would live until July.

But Mr and Mrs Beyless had no idea what to expect - particularly how the disease would progress. They were shocked by how her ability to communicate fell away. In March she could talk. Now she can only grunt, and needs 24-hour care.

"We don't know if she can focus on the TV," Mr Beyless said. "But we try to keep things as normal as we can. We don't want her to think that she has come home and is going to lie upstairs to die."

Mr Beyless feels angry that so little help is available. "Nobody has monitored Pamela or Donna [Mellowhip, another v-CJD victim of roughly the same age]. Nor any other patient. That would help the other families as new cases come along. If monitoring had started with the first case, then we would have had a better time. But instead we were learning from the start."

A loose-knit group, consisting of the families and relatives of victims, of whom there are almost 30, offers some help. But to the health and social services, v-CJD is a new phenomenon which lies outside their experience. Mr Beyless's biggest battle at present is with the social services. "We've only just been allocated a social worker," he said. The v-CJD Support Group is on 01630 673 973