Grieving parents of CJD victim's vow as report into BSE bungle is published

AS the Phillips Report into the BSE crisis is published, a couple who fought to get cash support for families, talk to LEWIS COWEN about the next stage.

DAVE and Dot Churchill have vowed they will make sure the Government sticks to its promises in the wake of the publication of the Phillips Report into the BSE crisis.

Their son Stephen was the first victim of variant Creutzfeldt-Jakob Disease, the human form of mad cow disease. He died, aged 19, in May 1995 after being ill for eight months.

Because his was the first death from the disease, now definitely connected with BSE, the Churchills, of Bath Road, Devizes, and their daughter Helen, had little support from health or social services. During Stephen's eight-month deterioration through depression, dementia and dependency they felt isolated and vulnerable. Stephen's short life ended in a nursing home for the elderly, the only place that would take him.

Their experiences during Stephen's illness and its aftermath, prompted the couple to set up the Human BSE Foundation to support families of other victims. They were its first chairman and secretary and they set up a helpline at their Bath Road home. Mr Churchill said: "If we hadn't done it, someone else would have."

Now, with the death toll from the disease standing at 85, a three-fold increase from what it was when the Phillips inquiry opened two and half years ago, there are more than enough families prepared to take up the fight and Mr and Mrs Churchill stood down from their posts at the end of last year.

Among the foundation's demands was a public inquiry into the BSE crisis and its connection with CJD. The Tory Government resisted and it was only after the last General Election that Lord Phillips was called upon to open one.

The report of the inquiry was published on Thursday, and Mr and Mrs Churchill found themselves at the centre of a whirlwind of publicity. A BBC TV crew spent all Thursday with them and they finished off the day taking part in a studio discussion on the BBC2 Newsnight programme.

"We got to bed about 2.30am, absolutely shattered," said Mrs Churchill.

But they are encouraged by the progress so far and, although they had not had time to read all 16 volumes of the inquiry report, they were impressed by what they had gleaned so far.

Mr Churchill said: "It is fair, thorough and detailed like the inquiry that produced it."

He added that there were no surprises among the criticisms levelled at politicians and civil servants, and the 24 named as making errors of judgement would have been on their list as well.

The Human BSE Foundation was treated with great respect by the inquiry, in contrast to its early days when the victims' pressure group was seen as a bunch of cranks. Members of the foundation were singled out by Agriculture Minister Nick Brown and Health Secretary Alan Milburn immediately after the official publication of the report.

Mr Churchill said: "They came into the room where we were all gathered, said their piece, took questions and seemed genuinely concerned. There were no media there so they were not playing to the press."

However, the Churchills are dubious about Government compensation. In particular, they are worried about a proposed trust fund from which victims' families can claim assistance.

Mrs Churchill said: "There are too many limitations attached to a trust fund. What we want is an across-the-board, no-fault compensation scheme that won't have to be means tested.

"We managed to cope but there are other families who are on benefit. One man had to give up his job when his wife died and left him with four traumatised kids to look after."

Mr Churchill added: "Now there is a strong admission of guilt and the Government is taking responsibility. The families should receive the same kind of recompense that the farmers had."

The couple have welcomed the Government's care package which will be administered by the Edinburgh-based CJD Surveillance Unit. One million pounds will be put at the unit's disposal to provide emergency help to the families of victims for nursing care.

Mrs Churchill said: "If the figures are right, there could be 2,000 cases being nursed each year for the next 40 years."

Is their job finished now?

"No," said Mrs Churchill, "It's the end of another phase but we're heading in the right direction." The next thing is the scientific review next year, the search for a treatment and, hopefully, a cure.

Butchers' customers carry on buying beef

MARLBOROUGH's only butcher John Sumbler said his sales of beef picked up during the BSE scare because his customers knew he got all of his meat from known and safe supplies.

Mr Sumbler, whose family has been in business in London Road for more than 50 years, said he had been concerned beef sales would fall and his business would be hit by the crisis.

However his customers trusted his meat came from reliably safe sources and continued to buy beef. They were joined, he said, by many other people who switched from buying meat at supermarkets.

Beef sales at supermarkets fell dramatically after the Government revealed a link between mad cow disease and its human form CJD.

Mr Sumbler said: "From the start customers realised that the traditional family butcher knew where his beef was coming from.

"People turned to their local butcher's shop instead of the supermarkets which they do not know as well and could not rely upon to know the sources of their meat.

"In the past five years our business has gone up rather than down and that includes sales of beef.

"In fact beef sales have never been so good. There is a trust between the traditional butcher and his customers which apparently does not exist with the supermarkets."

In Aldbourne the village butcher Francis May, of W Humphries Butchers, also found his regular customers carried on buying beef after an initial blip and that he picked up custom from people who decided they could not trust their usual supermarket supplier.

Mr Francis, who has been in business in Aldbourne for 35 years, said beef sales were at least as good as they were before the BSE crisis.

"There was a small blip right at the start but we have our regular customers who stick with us and they carried on having beef."

He said one peculiarity was that during the period when the sale of beef on the bone was banned he had more customers ask for it than before or since.

He said: "I think it was the case of asking for what they knew they could not have."

In Ramsbury Gilbert Mills, who runs the High Street butchers, said his beef sales were equally as good now as before the scare and that beef was the most popular choice of his customers.

Mr Mills said he agreed traditional butchers were trusted more than the supermarkets.

He said: "The pattern of people buying beef did change slightly.

"If people were having guests for dinner they might not have had a roast of beef just in case one of the guests had some objection to it."

He said sales of most beef cuts especially steaks and mince were maintained right through the BSE crisis.

Supermarkets have consistently refused to comment on the beef crisis.

Vet seeks answers on Europe imports

MALMESBURY vet Ray Williams wants to know what the Government and the Foods Standards Authority are doing to stop BSE-contaminated beef from entering the UK from European countries.

Dr Williams and his partners at Malmesbury's George Veterinary Clinic, spotted what could have been the first recorded case of BSE in Britain more than 17 years ago.

Dr Williams said this week he had not seen a single case of BSE in North Wiltshire in more than 12 months.

But he was now concerned that beef imports from Europe and Ireland may be contaminated with BSE because farmers abroad could still be feeding cows with food containing meat and bonemeal.

In addition, various beef products imported into the UK were still being made from cows which were more than 30 months old.

Dr Williams said evidence was also available suggesting that European countries were not revealing the full extent of their own BSE cases, or number of CJD victims.

He said: "Why isn't our Government and the Food Standards Authority giving us information on the importation of meat products. Who is to say that some of our cases of CJD did not come from abroad?"

Dr Williams and practice partner Peter Oura, who has since retired, were asked to look at an unusual case of a staggering cow at a dairy farm in Castle Coombe in 1983. The cow's symptom's included tremors, mania, weight loss and lack of co-ordination.

Dr Williams said: "Looking back it was showing the classic signs of BSE but we had never come across anything like this before."

When two more cases appeared, the vets sent tissue samples for analysis to Ministry of Agriculture laboratories. The labs failed to reach conclusions about the samples, as did Bristol Veterinary School which examined tissues from another Wiltshire cow in 1985.

Dr Williams said: "What was so frustrating for us at the time was the inability to get other people interested in the condition, which we believed was something quite different."

It was because of that earlier frustration that the practice was now calling on the Government for a statement about beef imports from Europe.

He said: "We are not going to be frustrated again by a lack of interest and people not asking the right questions. And we need answers sooner rather than later."