The BBC's Margaret Gilmore reports on one of the families affected by the human form of BSE

Members of 11 families have been telling the BSE inquiry how their relatives died and why they felt let down by a health service that knew little about the disease.

Speaking at a news conference, Dorothy Churchill, the mother of a CJD victim said she thought the standard of health care seemed "very patchy".

Stephen's mother, Dorothy, tells Radio 5 Live about her son's treatment

"I would say the vast amount [of families] have found shortcomings in the care and understanding and that's what we have to get right out for the future. There's going to more victims ... but so far the system isn't working."

She added: "It depends on your postcode whether you get good care for human BSE."

Support group

Mrs Churchill and her husband David set up the Human BSE Support Group to offer advice and information to other victims' families after the death of their 19-year-old son Stephen.

Mr Churchill said the family was kept in the dark about Stephen's 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 said.

Victim's father David Churchill describes the moment he discovered his son's diagnosis

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

It emerged that several relatives had carried out their own research in the quest for information.

Stephen's sister, Dr Helen Churchill, who was a dental student when her brother fell ill, told the inquiry she had spent many evenings in her college medical library researching neurological disorders.

And Gerard Callaghan, whose brother Maurice died from nvCJD, said that his family read up on neurological illnesses to find out what was causing Maurice's rapid deterioration.

But at a news conference later he said he was satisfied with the care his brother received.

"Maybe we were lucky but it shouldn't be a question of luck," he said.

Reliving the tragedy

Frances Hall, from Durham, was one of several distraught relatives giving evidence.

She talked about her son, Peter, who died on 8 February 1996, just before his 21st birthday.

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Peter, who had been a vegetarian since the age of 15, fell ill shortly after he began a university degree. Mrs Hall said: "He just appeared apathetic, he lost interest in his appearance, before that he had been a bundle of energy."

At first, Peter's doctor diagnosed depression but his condition continued to deteriorate and he was eventually taken into hospital.

"It was obvious this was a serious condition, and that's when I first asked about CJD," she said.

Mrs Hall added that she had stopped buying beef five years before Peter's illness, when BSE in cattle first hit the headlines.