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EDITIONS
BSE Tuesday, 27 October, 1998, 08:53 GMT
CJD families' plea on care
Abattoir
A possible link between BSE and CJD was identified in March 1996
The public inquiry into BSE is hearing more evidence from the relatives of some of those who died of the human form of "mad cow" disease.

On Monday, the three members of the inquiry panel heard how new variant Creutzfeldt-Jakob Disease (nvCJD) stripped previously healthy, active young people of all dignity and individuality.

Now, victims' families are pressing for consistent health care for those who are diagnosed with the disease in future.

Members of 11 families have been telling the inquiry that they were let down by the National Health Service.

There have been 29 recorded cases of nvCJD and families want a national care programme.

Kept in the dark

David Churchill, the father of Britain's first and youngest victim of nvCJD, 19-year-old Stephen, said the family was kept in the dark about his condition.

"The only clue that we received was when we saw our son's brain biopsy operating notes and it had in the top right-hand corner 'reason for operation' and it had 'CJD?'" he told BBC Radio Five Live.

He said there was little information available at the time and they relied on the media for details.

Stephen's mother, Dorothy, said her health authority was unsure what to do with Stephen. It moved him from a psychiatric hosptial to the neurological department of the district hospital.

"He had to lie in a corridor on a stretcher for three hours waiting for a bed," she said.

"We were told the local hospital wouldn't have Stephen because he didn't have cancer. The Macmillan nurses didn't have anything to do with us because he didn't have cancer."

Eventually he was placed in a home for elderly which was equipped to care for his needs. "The idea was that Stephen could be nursed there but would come home as often as we could manage it."

The Churchills have set up the Human BSE Support Group to offer advice and information to other victims' families.

Cow with BSE
The new CJD strain alerted scientists to the link with infected meat
Earlier on Monday, Mrs Churchill said: "What we want now is a care programme put in place for future victims. This is a fast-moving disease and plans should be in place for people's care.

"An example of that is our case where our son's wheelchair didn't actually arrive until three days after he died."

BSE was first diagnosed in November 1986 and since then scientists and consumers have been haunted by the thought that it could be transmitted to humans.

Described as the human form of BSE, CJD brings on symptoms of dementia in victims who rapidly decline to a state where they cannot walk, talk or look after themselves, as their brain degenerates into a sponge-like state.

There is no cure and death normally occurs about six months after the onset of the disease.

Scientists think CJD is transmitted via an infectious protein called a prion, but the precise mechanism behind the disease is unknown.

Some victims contracted the disease by being treated with infected extracts from human pituitary glands to boost growth or aid fertility.

CJD has been known to lie dormant for 30 years before symptoms show, but the discovery of a new strain of CJD which seemingly attacked much younger victims alerted scientists to the possibility of a link with eating meat infected with BSE.

However, there is still no consensus as to the scale of the CJD threat. Some scientists have warned of an epidemic on the scale of Aids and HIV, with up to 500,000 new victims early in the next century. But others suggest the number of cases will remain very small.

 WATCH/LISTEN
 ON THIS STORY
BBC News
Lawyer David Bodie talks about the families' input to the inquiry
BBC News
The BBC's Margaret Gilmore reports on one of the families affected by the human form of BSE
BBC News
Victim's father David Churchill describes the moment he discovered his son's diagnosis
BBC News
Stephen's mother, Dorothy, tells Radio 5 Live about her son's treatment
BBC News
BBC Environment Correspondent Richard Wilson discusses the families' anger and disappointment
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