Victims' families welcome end to 'culture of secrecy'

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The families of victims of variant Creutzfeldt-Jakob disease delivered a guarded welcome yesterday to the Phillips BSE inquiry, reserving scathing criticism for ministers and officials in charge at the time of the crisis.

The families of victims of variant Creutzfeldt-Jakob disease delivered a guarded welcome yesterday to the Phillips BSE inquiry, reserving scathing criticism for ministers and officials in charge at the time of the crisis.

More than 130 relatives crowded into a Westminster conference centre for a long day of apologies to those who had had to watch their loved ones ravaged by the degenerative brain disease.

The 16 volumes of the report on the bovine spongiform encephalopathy (BSE) inquiry were presented shortly after midday, but after six hours of reading and analysis the most common reaction was that no amount of words could do justice to the "long nightmare" of witnessing a vCJD sufferer.

An announcement by Nick Brown, the Minister of Agriculture, of a compensation package for the families of victims combined with a care package for those who have yet to succumb to the disease met with almost universal relief.

David Churchill, a retired senior fire officer whose 19-year-old son Stephen became the first victim of vCJD when he died in May 1995, spoke for many when he pointed out that the multi-million pound package, co-ordinated by the CJD Surveillance Unit in Edinburgh, would provide facilities from which his son did not benefit.

Along with his wife, Dorothy, Mr Churchill, 62, set up the Human BSE Foundation to help relatives and campaign for the public inquiry. "We were the first people to experience vCJD so we can expect that Stephen's case caught some in authority unawares. But the level of support and information for others was lamentable," he said. "Today we had the announcement that finally, finally, something is being done."

Many emerging from the Queen Elizabeth II Conference Centre commended the report's balance and thoroughness. For others, there was a feeling that it had not done enough to bring to account those whom they saw as responsible for the spread of the cattle disease.

Roger Tomkins, 54, had spoken about how his daughter Clare died aged 24 in 1998, years after becoming a vegetarian, when vCJD reduced her to "howling like a sick injured animal" with "eyes filled with fear". He said: "This inquiry has uncovered a culture of secrecy and trying to keep from the public a truth that was inevitably going to come out."

Mr Tomkins said he was now focused on the meeting on Wednesday with Alan Milburn, the Secretary of State for Health, to start the process of deciding what form the Government's multi-million pound compensation package should take. Mr Milburn has said that £1m will be made available to the Edinburgh unit to begin "parachuting" care to the five out of the 85 known vCJD sufferers still alive and those who may yet develop the disease.

The families' distress was never far away. John Keleghar, a former chairman of the Human BSE Foundation whose son Mark died, 23, of vCJD in May last year, said: "I went to some of the hearings at the BSE inquiry and when it comes to these ministers and officials I have never come across such a smug and arrogant bunch of people in my life. I don't know how they think apologies can make any difference. I don't accept them."

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