Document Directory

13 Nov 98 - Supply of blood puts women at CJD risk
13 Nov 98 - Major rejected appeal for BSE public inquiry
12 Nov 98 - MPs told of CJD fear over pregnancy jab
12 Nov 98 - Dobson foiled by computer crash
08 Nov 98 - Surgical instruments could pass CJD between patients
07 Nov 98 - Public may have been misled on beef threat
06 Nov 98 - Advisers clash over BSE
31 Oct 98 - 'Spin-doctoring misled public in BSE crisis'
29 Oct 98 - Medical chief 'forced to say beef was safe'
29 Oct 98 - Scientists find method to screen all sheep for BSE
27 Oct 98 - London to get research centre to lead the fight against CJD
27 Oct 98 - Parents fear passing CJD to children
27 Oct 98 - BSE families attack Government's 'cavalier' attitude to care
27 Oct 98 - Families urge better care for CJD victims
26 Oct 98 - Families describe CJD horror
25 Oct 98 - Blood products ban to curb CJD
25 Oct 98 - Families want early care fund for CJD victims
23 Oct 98 - Scientists find method to screen all sheep for BSE
22 Oct 98 - Data on BSE 'blocked by secrecy'
22 Oct 98 - BSE official hits back at Calman
21 Oct 98 - Government 'had no plan to cope with BSE disaster'
20 Oct 98 - Former chief vet refuses to hand over BSE tape




13 Nov 98 - Supply of blood puts women at CJD risk

by Jill Sherman, Chief Political Correspondent

Times ... Friday 13 November 1998


The Government admitted yesterday that thousands of pregnant women faced a remote risk of contracting the brain disease CJD until Britain received new supplies of a rare blood product from abroad.

Frank Dobson, the Health Secretary, said in a Commons statement that British supplies of an antibody needed to prevent birth defects "should be made available in a few months". But health chiefs made clear that the benefits of using present supplies of the antibody, which could stop fatalities in pregnant women and their babies, outweighed the tiny and unproven risk of contracting CJD.

Mr Dobson's statement followed concern by Stephen Dealler , a microbiologist, that up to 80,000 pregnant women in Britain could be put at risk by using anti-D immunoglobulin to protect against haemolytic disease, a disease that Mr Dobson said could cause fatalities, cerebral palsy or deafness. The antibody is given to pregnant women whose rhesus factor is opposite to that of their baby.

Mr Dealler said that pregnant women were being exposed to potential transmission of new variant CJD, which has been linked to "mad cow" disease, because British supplies of the antibody were still being used.

Anti-D was included in a ban announced by the Department of Health eight months ago on products manufactured with blood donated in Britain after research suggested that new variant CJD could be transmissible. But health chiefs admitted yesterday that global supplies were so scarce that hospitals were still using British stocks.

Mr Dobson said: "There has always been a worldwide shortage of anti-D immuno_globulin. It has therefore taken longer to obtain sources of plasma for use for anti-D from non-UK sources than for other blood products."

Supplies of plasma from abroad were hard to obtain because donors were rare and had to be immunised. But he told MPs: "We don't know how many people are suffering from new variant CJD and it is unlikely we will know for some years. We don't know how nvCJD arises or is transmitted, so it is extremely difficult to deal with. At all times I have sought expert advice, acted promptly on that advice, made the advice public and found the necessary funds."

The Department of Health said in February that it was halting British-derived supplies and going over to production using imported blood and plasma. New versions of the blood products, including Factor VIII for haemophiliacs and albumin used for burns victims, were ready for the original autumn deadline with supplies imported from America.

But health chiefs say that the anti-D shortage and, to a lesser extent, of an injection protecting holidaymakers from hepatitis A, means a balance must be struck between the risk of managing without and that of nvCJD.


13 Nov 98 - Major rejected appeal for BSE public inquiry

By David Brown, Agriculture Editor

Telegraph ... Friday 13 November 1998


John Major and his Cabinet blocked a proposal for an independent public inquiry into the BSE epidemic just before the official announcement on March 20, 1996, that the disease was linked to the deaths of young people.

As the Cabinet considered new scientific evidence that BSE may have spread to man, Douglas Hogg, then agriculture minister, argued that pressure for a judicial inquiry would become "irresistible". But his plan "proved unacceptable to ministers collectively", Richard Packer, the most senior civil servant at the Ministry of Agriculture, disclosed yesterday.

One of the first acts of the new Labour Government was to set up a BSE inquiry under Sir Nicholas Phillips, an Appeal Court judge, which has been sitting in London for the past eight months. It is due to report by June.

Mr Packer, Permanent Secretary at the ministry since February 1993, told how Mr Major and most of the Cabinet rejected the idea of the inquiry . On Tuesday, the inquiry was told that Mr Major resisted demands to spend public money fighting the BSE epidemic while he was Chief Secretary to the Treasury in 1988 under Prime Minister Margaret Thatcher.

Mr Packer referred to a confidential letter sent by Mr Hogg to Mr Major on March 18, 1996, calling for urgent measures to protect the public in view of a new report from the Government's independent Spongiform Encephalopathies Advisory Committee. Mr Hogg wrote: "The balance of probability concerning the transmissibility of BSE to man has been fundamentally altered by the committee statement."

The letter explored options including the total withdrawal of all beef products containing material from British cattle more than 30 months old - a a measure which, he estimated, would have cost about 1 billion in compensation and other expenditure. He also referred to the "cataclysmic view" shared by Michael Heseltine, Deputy Prime Minister, that the BSE human link announcement would "finish the British cattle industry for decades" and that it should be accepted.

Mr Heseltine favoured wiping out the entire British cattle herd and starting again with new stock. But Mr Hogg said that, if dairy cattle were included - as they must because most BSE cases were in dairy herds - it would cost the taxpayer "several billion" pounds. Finding replacements would also cause serious problems.

The farm minister did not consider that course of action to be "proportionate to the admittedly very major problems with which we are undoubtedly faced". Mr Hogg concluded his letter by saying: "I believe that it is inevitable that we will need to accept an inquiry into the Government's reaction to BSE probably headed by a High Court judge."


12 Nov 98 - MPs told of CJD fear over pregnancy jab

By Charles Arthur, Technology Editor

Independent ... Thursday 12 November 1998


The Government last night urged mothers not to abandon injections which may save up to 80 newborn babies each year, after worries resurfaced that Britain's blood supply is contaminated with the human form of mad cow disease .

Frank Dobson, Secretary of State for Health, admitted to the Commons that there was a "theoretical" risk from the Anti-D immunoglobulin injection, given to about 80,000 pregnant women in Britain each year to prevent their babies developing a potentially fatal form of anaemia.

The Anti-D supplies now in use came from British donors , and so could theoretically could be contaminated with the "prion" that causes the fatal "new variant" Creutzfeldt-Jakob disease (nv-CJD), the human form of BSE.

Four of the 31 people who have so far died of nv-CJD were blood donors, and studies suggest that the prions can be carried by white blood cells . There is no test to detect prions in blood, and symptoms may not appear for decades after infection.

However, Mr Dobson said there was a worldwide shortage of Anti-D immunoglobulin, and it will take a few months to introduce fresh supplies from the United States.

The Government decided in February that British donors should not be used for a range of blood products which involve white cells, a move that will cost 100m annually.

But the National Blood Service said it had taken until now to find suitable sources free of the HIV and hepatitis viruses. And a spokeswoman admitted that it could take months to acquire non-British supplies of Anti-D, which has to be made specially by inoculating men with foreign blood cells.

The Department of Health said last night: "The CJD risk remains theoretical, but the risk to babies without Anti-D is known.

"In our view, the balance of risk and benefits is far greater towards Anti-D than the theoretical risk of nv-CJD."

The Tory health spokesman Alan Duncan urged Mr Dobson to issue a list of all products at risk of contamination.

"Patients need to know the risks and they need to exercise an informed choice," he said.


12 Nov 98 - Dobson foiled by computer crash

by Julia Hartley-brewer Political Reporter

Evening Standard ... Thursday 12 November 1998


Health Secretary Frank Dobson was today given a foretaste of the millennium bug chaos when a computer crash left him fuming in his ministerial office when he should have been making an emergency statement to the Commons.

MPs awaiting an statement from Mr Dobson on the risk of mad cow disease in blood products were instead informed by Speaker Betty Boothroyd that he had been delayed because of a computer glitch which shut down every computer in his department.

Tory frontbench spokesman Sir Patrick Cormack told MPs: "I hope this isn't a foretaste to the millennium bug."

And he called on the leader of the House, Margaret Beckett, to investigate the computer systems in various key departments to ensure that the glitch did not delay House business again.

Mr Dobson's staff were not amused. A Health department spokesman would comment only: "If you want to make something of this - help yourself."

Mr Dobson was to have allayed fears that injections given to 230,000 people in Britain each year may carry the risk of mad cow disease . He was due to tell the Commons that there was only a "theoretical" risk of contamination by CJD, the human form of BSE, in injections given each year to 80,000 new mothers and 150,000 holidaymakers.


08 Nov 98 - Surgical instruments could pass CJD between patients

by Michael Prescott and Steve Farrar

Sunday Times ... Sunday 8 November 1998


The government faces a new health service crisis and a potential billion pound bill, because of fears that equipment used in surgery is spreading CJD , the human equivalent of "mad cow disease".

Scientific advisers to the department of health confirmed yesterday that a specialist group has been appointed to advise on cutting the risk of patients who undergo routine operations contracting the fatal brain condition from the implements used upon them in surgery.

The most radical option under discussion is destruction of almost all equipment used in NHS operating theatres , at a cost which would run into billions of pounds - especially as new equipment would then need to be routinely disposed of after each operation, to ensure CJD was not passed from one patient to another.

Although this is one of several options, scientists say it is the only way to be 100% safe.

No known sterilisation technique can kill the "prion" organism that causes CJD, and nobody knows how many people harbour the disease, meaning any estimate of the number of surgical implements carrying the fatal "prion" is impossible. One scientist said yesterday that the number of people incubating CJD could run to millions , meaning many operations were being carried out on infected people, and infected implements then reused.

Already, the government's advisers have called for more equipment to be routinely disposed of after each operation than is currently required. Ministers, they said, would have to decide how much money they could afford to spend on the tougher policy, and on what scale the destruction of implements took place.

"Even if it leads to a small reduction in the numbers who contract CJD it will be worth it," said Dr Michael Crumpton, chairman of the joint Transmissible Spongiform Encephalopathy working group.

He stood down last month from the chairmanship of the the Advisory Committee on Dangerous Pathogens (ACDP), which is studying the problem of CJD.

Crumpton also revealed that the ACDP has ordered that equipment used in brain surgery should be separated from other implements, and not used in different types of operation, because of the CJD risk.

Another scientist said this could prove just an interim step, and that an order to destroy all equipment used in brain surgery could be on the way.

"The risk wouldn't need to be very high at all before it would be economically worthwhile throwing away instruments used on brain and peripheral tissue," said Dr Stephen Dealler, a microbiologist hired by the Department of Health to devise a test to detect CJD in donated blood.

A doctor said the problem was "immense". Scalpel blades were already thrown away after operations, but the operating theatre equipment sterilised after each operation included the operating table and even light switches.

Alan Duncan, shadow health minister, criticised the health department: "It is time for ministers to stop being cagey about this. The public needs to know the extent of the problem and the likely cost."

Tony Minson, professor of virology at Cambridge University, said there had been "a few cases where surgical implants have transmitted CJD " and that precautions were needed.


07 Nov 98 - Public may have been misled on beef threat

By Michael Hornsby, Agriculture Correspondent

Times ... Saturday 7 November 1998


A former Chief Medical Officer confessed yesterday that he might have misled the public over the safety of beef at the height of the "mad cow" epidemic.

Sir Donald Acheson, who held the post from 1983 to 1991, was confronted at the BSE inquiry with television film of an interview he had given on May 16, 1990. In it Sir Donald said: "There is no risk associated with eating British beef, and everyone - children, adults, patients in hospital - can be quite confident with the safety of beef."

Sir Donald said yesterday that he should have stuck to the more cautious line , previously agreed with his scientific advisers, that there was "no scientific justification for not eating British beef".

Instead, Sir Donald said, he had used the phrase "no risk", adding: "I should not have done that, because the advice of my [expert] groups was that there was a remote risk, not no risk."

It was for the inquiry to judge, Sir Donald said, whether in using the term "no risk" he had conveyed the wrong impression to the public.

In his defence, Sir Donald said that he had been under huge pressure to issue reassuring statements in a climate of panic after the discovery of the first case of a BSE-like disease in a cat in early May 1990.

He and his advisers had also assumed that the Ministry of Agriculture was enforcing abattoir controls to keep dangerous cattle parts out of the food chain. They had not known that serious breaches of these safeguards were occurring.

In earlier oral and written evidence , Sir Donald had insisted that he had never said there was no risk from eating beef. He criticised John Gummer, a former Tory Agriculture Minister, for rushing out a statement soon after an announcement of the cat's illness, saying that beef was "perfectly safe" to eat. He had not been consulted about the statement and would never have used such a phrase himself, he claimed.

Sir Donald also attacked Keith Meldrum , the former Chief Veterinary Officer, for appearing to suggest during a meeting with leaders of the farming industry in June 1988 that he did not consider BSE a threat to public health. "The idea that I said there was no problem was complete nonsense," he said. He had gone out of his way to force ministers and officials to "address worst-case scenarios", and had made clear his view from the outset that there was "an unquantifiable risk" that BSE could transmit to people.

Sir Donald also criticised the Ministry of Agriculture for delaying for six months before telling him about the discovery of BSE, and complained about "incessant" expenditure reviews and threats of staff cutbacks during his time as Chief Medical Officer.

He estimated that about 25 per cent of his work involved "defending my people against more cuts", which had taken up time and energy that could have been spent on tackling the BSE crisis.

Sir Donald said he also deeply regretted that he had not pressed harder for the appointment of a "research supremo" into BSE, as had been done successfully with Aids.

Sir Donald told the inquiry that the Ministry of Agriculture had tried to pressure him into making overly optimistic statements about food safety before, during the scare over salmonella in eggs.

Sir Donald also criticised the ministry for delaying the publication of evidence that linked BSE with infected cattle feed and for continuing to allow the export of feed despite its being banned at home.


06 Nov 98 - Advisers clash over BSE

By Andy Gales

Independent ... Friday 6 November 1998


Two former senior government advisers clashed yesterday over allegations that the human risks from the BSE epidemic were wrongly played down.

Sir Donald Acheson, the former chief medical officer, defended his actions during the early years of the BSE crisis. He attacked the former chief veterinary officer, Keith Meldrum, for comments Mr Meldrum made during a meeting with leaders of the farming industry in June 1988.

But Sir Donald later admitted errors he also made in trying to calm public fears in 1990.

Mr Meldrum had told the 1988 meeting with farmers that Sir Donald "advised that no immediate action was called for" to deal with the problem.

But when it was put to Sir Donald at the BSE inquiry in London yesterday that he had felt no cause for concern 10 years ago, he replied that it was "absolutely not the case".

He said that the Ministry of Agriculture had already sent him a letter in March 1988, about BSE-infected cattle.

Of Mr Meldrum's comments, he said: "That is quite inconsistent with what my actions were when I got the letter. It was also quite inconsistent with the minute put out to ministers following a meeting on 17 March 1988."

Sir Donald added that the subject of that meeting with various experts in the field had been to get them to "address the worst case scenarios".

Despite his criticism of Mr Meldrum, Sir Donald admitted using the wrong words in a press statement he issued aimed at reassuring the public of the safety of British beef.

He told a news conference on 16 May 1990: "There is no risk associated with eating British beef."

He also said that everyone, including children and hospital patients, "can be quite confident" with the safety of it.

But at the inquiry yesterday he revealed that his statement should have read that "there is no scientific justification for not eating British beef". He said: "Instead of saying no scientific justification, I said no risk. I should not have done that because the advice from my groups [experts] was that there was a remote risk and not no risk."

Sir Donald expressed concern that the ministry had allowed a six-month delay to develop before passing on information to him about the BSE epidemic. He also criticised the "incessant" cutbacks and reviews being carried out on the Civil Service during his time as chief medical officer.


31 Oct 98 - 'Spin-doctoring misled public in BSE crisis'

By David Brown, Agriculture Editor

Telegraph ... Saturday 31 October 1998


Sir Donald Acheson, who was the Government's Chief Medical Officer when the bovine spongiform encephalopathy crisis first broke, has denied telling the public that beef was safe to eat and claims that a key statement attributed to him was the result of spin-doctoring by Department of Health press officers.

Sir Donald, CMO from 1983 to 1991, said in written evidence to the BSE Inquiry in London, that a "superscription" was added to a statement he issued on May 16, 1990 after the death of the first cat from brain disease linked to beef, saying: "British beef is safe - says Chief Medical Officer."

Sir Donald admitted telling the public that "beef can be safely eaten by everyone" but denied implying that this meant "no risk". In the press release, which he approved, he saidBritish beef can be safely eaten by everyone, both adults and children , the Chief Medical Officer, Sir Donald Acheson, confirmed today. This advice has been given to the National Health Service."

The statement said: "I have taken advice from the leading scientific and medical experts in this field. I have checked with them again today. They have consistently advised in the past that there is no scientific justification for not eating British beef and this continues to be their advice. I therefore have no hesitation in saying that beef can be eaten safely by everyone, both adults and children, including patients in hospital."

BSE has since been linked with the deaths of 29 people from a new form of Creutzfeldt-Jakob disease.

Sir Donald, who gives evidence in person next Friday, claimed that he found it "impossible" to reconstruct the considerations which led to the wording of the statement or why he "chose to follow" the Ministry of Agriculture in the use of the word "safely".

The statement provoked a "fraught" aftermath. While the public seemed to accept his statement, some of his medical colleagues claimed that he had gone too far. But, after risk assessments by Seac, the Government's independent advisory committee on these diseases in people and animals, he decided to let the statement stand. He said: "It was several years after the events that I became aware that for some people the word 'safe' without qualification means zero risk. "

In evidence two weeks ago, Sir Donald's successor, Sir Kenneth Calman, who retired last month, defended his repeated advice to consumers that beef was safe to eat. "In ordinary usage safe doesn't necessarily mean 'no risk'," he said.

Sir Donald also accused the ministry of secrecy and failing to keep him fully informed about BSE. He said that MAFF "had a different perception of the implications of BSE to health than I did". He said that in May 1990 he came under pressure to say that British beef was safe, without including "an element of uncertainty due to incomplete knowledge" about BSE and the risks to humans.

He cited a press statement from John Gummer, the then food minister, which said on May 15, 1990: "British beef is perfectly safe to eat," explaining that moves to remove specified "high risk" offals from cattle before they were sent to the butcher were simply precautions to protect people from "a remote and theoretical risk".

Sir Donald said: "I can think of no circumstances in which I would have approved the formulation 'perfectly safe'. "

Paul Tyler, the Liberal Democrat Chief Whip, said that everyone who had suffered from the BSE disaster was entitled to an explanation from the former Agriculture Minister, Mr Gummer, and his fellow ministers. He said: "No wonder they resisted our campaign in the last Parliament for a full, open public inquiry. It is turning into a spectacular detective story, with a whole series of skeletons falling out of the Whitehall cupboards."


29 Oct 98 - Medical chief 'forced to say beef was safe'

By Steve Connor, Science Editor

Independent ... Thursday 29 October 1998


The government's most senior medical advisor at the height of the BSE epidemic claimed yesterday that he was forced to make statements about the safety of British beef.

Sir Donald Acheson, chief medical officer at the Department of Health between 1983 and 1991, said he was pressurised into saying that beef could be eaten safely by everyone.

In written evidence to the BSE inquiry, Sir John detailed the tension between the health department and the Ministry of Agriculture, Fisheries and Food (Maff) which erupted over the risks to humans from BSE in cattle.

He accused Maff of secrecy in failing to inform him about the BSE outbreak and the crucial scientific research that could have a bearing on its potential transmission to humans.

Sir Donald explained how he came under pressure in May 1990 to say that British beef was safe following the announcement that a cat had been diagnosed with a BSE-like condition. He wanted to wait a day for a meeting of the Government's Spongiform Encephalopathy Advisory Committee but was told that a statement had to be issued immediately saying that British beef was safe. "I find it impossible to reconstruct the considerations which led to the wording of my own contribution, in particular why I chose to follow Maff in the use of the word 'safely' rather than 'with confidence' as had been the phrase agreed [the day before]," Sir Donald said.

In retrospect it would have been preferable to introduce "an element of uncertainty due to incomplete knowledge" about BSE and the risks to humans, he added.

"The aftermath of the issuing of my public statement in May 1990 was fraught. The public in general seemed to accept the advice I had given but not all of my public health colleagues did... it was several years after the events that I became aware that for some people the word 'safe' without qualification means zero risk ," he said.

Sir Donald said Maff had tried to pressurise him: "A junior minister sent for me and put intense pressure on me to make a less carefully qualified statement about the safety of eggs. Bearing in mind that there were several thousand cases of food poisoning annually due to infected eggs and some deaths, I was not prepared to do this."

Sir Donald detailed several areas of tension with Maff over BSE, such as the delay in telling him about the cattle epidemic for at least six months after Maff became aware that it had implications for human health.

He also criticised Maff in delaying the publication of evidence which linked BSE with infected cattle feed and the practice of continuing to export the feed despite it being banned at home. The Department of Health was also not informed about an important international scientific meeting about BSE, he added.


29 Oct 98 - Scientists find method to screen all sheep for BSE

By Roger Highfield

Telegraph ... Thursday 29 October 1998


A technique has been developed that for the first time makes it practical to screen the national flock of 42 million sheep for mad cow disease .

So far only nine sheep have been checked for BSE, says Prof Jeffrey Almond, a member of the Government's spongiform encephalopathy advisory committee, SEAC, He urged the Government to test the national flock "as a matter of urgency" .

British sheep may have been fed BSE-infected bonemeal made from cattle which had the disease until at least 1988. Two years ago it was confirmed that BSE can be passed to sheep through their food.

Until now there has been no simple way to distinguish the effects of BSE on sheep from those of scrapie, a related spongiform disease that has affected the national flock for centuries with no apparent consequences for human health.

Today, in the journal Neuroscience Letters, another SEAC member, Prof John Collinge, and colleagues at St Mary's Hospital, London, working with the Central Veterinary Laboratory, Weybridge, Surrey, publish the results of a preliminary survey to establish a new screening method. Their work demonstrates that "molecular screening" for BSE in sheep should only cost a few pounds per test .

Currently, the "gold standard" method is a bioassay, which involves inserting suspected infectious tissue into the brains of laboratory mice and observing them.

However, it takes two years for the mice to succumb to the disease, under careful observation and carefully controlled conditions. The overall cost, approaching 30,000 per sheep, and the time, makes the method impractical to use, said Prof Collinge.

The new method is based on a type of test called Western Blot analysis, which smashes up the abnormal prion protein thought to cause the disease into fragments and detects different strains by the different pattern of fragments.

More work must be done to perfect the test but "it looks as though it is going to be an effective means of differentiating BSE in sheep from sheep scrapie ", said Prof Collinge. Recently, another method with the potential for mass screening was announced by the Nobel laureate Prof Stan Prusiner, Dr Jiri Safar and colleagues at the University of California, San Francisco.


27 Oct 98 - London to get research centre to lead the fight against CJD

By James Meikle

Guardian ... Tuesday 27 October 1998


The struggle to identify, understand and treat human BSE moved up a gear yesterday with the announcement of an international research centre to look at the disease.

The programme of the London unit will include developing tests on blood and tonsils to help early diagnosis of the fatal condition, and warning the Government if the disease becomes epidemic.

The centre has been guaranteed long-term funding . It will co-ordinate and support other researchers, and also work on other diseases thought to be caused by the prions, or rogue proteins which destroy their healthy neighbours.

The unit will be headed by John Collinge , of St Mary's Hospital and Imperial College, London, whose research group is already a world leader. Another specialist, Charles Weissman from Zurich, will join the team next March.

At first, new laboratories will be built at Professor Collinge's base at St Mary's, but another London site is being considered for the unit, which will be largely funded through the government's Medical Research Council.

Prof Collinge said yesterday: "I have tried to build a critical mass of people to tackle the problem of human prion diseases. Until recently we have had to weld together a lot of separate research grants... and we had reached the point where you don't do any science anymore, you write grant applications."

The unit will have about 60 staff . Early work will include developing tonsil checks for potential victims of human bovine spongiform encephalopathy, officially known as new variant Creutzfeldt-Jakob disease, to see whether the prions are present.

Prof Collinge said tests on about 20 patients so far had been positive. These tests provide far less of a shock to the system than brain biopsies, which cannot give final confirmation of human BSE. This has to wait until a brain examination after death.

In addition, researchers have begun collecting thousands of tonsils removed from normal patients in routine operations to see if they can find the proteins. Prof Collinge hoped he would find none, but "failure would tell scientists nothing reassuring, while small numbers would be worrying". Even one in a 1,000 might indicate 50,000 of the country's 50 million population suffering the disease.

Twenty-nine people have so far probably died from eating infected beef in the late 1980s, but Prof Collinge said: "I would not be reassured by the small number of cases so far . It is an extremely long incubation period for humans."

The unit will seek other blood-based, and trustworthy human BSE tests - considered vital to protect transfusions - and drugs to combat the so-far incurable disase.


27 Oct 98 - Parents fear passing CJD to children

By Charles Arthur, Technology Editor

Independent ... Tuesday 27 October 1998


Families whose relatives died of "human BSE" described yesterday their fears that they or their children could also succumb to the fatal disease.

They also told the BSE Inquiry in London of callous treatment at the hands of coroners, doctors and funeral directors immediately after the victims' deaths - and in some cases the cause is still not recorded as Creutzfeldt-Jakob disease (CJD). Lack of co-ordination may also have slowed significantly the identification of the emerging disease, suggested one family.

Clare Callaghan, whose husband Maurice died in November 1995 of the "new variant" of the disease (nv-CJD) - caused by eating BSE-infected food - broke down as she said: "We live with this every single day. Not enough is being done to help people like me, parents who constantly face the possibility that it could strike again . I couldn't cope with going through that again."

Mrs Callaghan has a young daughter: "I still don't know what to tell her when she asks why her father died. How do you explain to a six-year-old it was because of meat?"

Anthony Bowen, whose son Anthony was born by Caesarean section three weeks before his wife Michelle died of the progressive illness, said: "I live with the prospect that my son may succumb to nv-CJD by maternal transmission. I could still lose my three children to nv-CJD ."

The cause of Mrs Bowen's death is still listed as "bronchial pneumonia, dementia and kidney failure", though Mr Bowen is trying to have it changed to nv-CJD.

David Churchill, whose son Stephen was the first to die of nv-CJD in May 1995, aged 19, told the Inquiry that if neurologists and hospitals had shared fully the news of the unusual case, the fatal illness could have been identified three months before the March 1996 Government announcement.

"Our understanding is that the National CJD Surveillance Unit knew of five cases, but because of medical protocol, they couldn't intrude," he said.

Gerard Callaghan, brother of Maurice, said the family was prevented from holding a traditional wake with an open coffin. Instead, local health officials "policed" the burial of the lead-lined coffin in a grave dug almost twice its usual depth , and filled with quicklime to destroy the body.

"We tried to register the death and were told that the coroner would not accept 'dementia' as a cause of death in a 32-year-old," he said.

Other families described similar struggles with officials. At the inquest of Alison Williams, who died in February 1996, the coroner described fears that nv-CJD was caused by eating infected food as "imaginary" and remarked: "It has reached the stage where, by calling oneself a doctor, you could say that eating lettuce causes CJD."

Frances Hall, whose son Peter died aged 20 in February 1996, did not receive a death certificate until August because the coroner refused to accept that CJD could be the cause.

The Inquiry continues.


27 Oct 98 - BSE families attack Government's 'cavalier' attitude to care

By David Brown, Agriculture Editor

Telegraph ... Tuesday 27 October 1998


Families of young victims of the new form of fatal brain disease linked to BSE in cattle demanded aid from the Government yesterday and attacked "piecemeal and unacceptable " standards of care.

Lawyers representing relatives of the 29 victims hit out against "a cavalier approach " to families which, they claimed, had led to "distressing and undignified" ends for some of the victims and mental turmoil for those they left behind. They challenged the Government to set aside a special fund to pay bills estimated to be up to 45,600 a year.

The cost, in terms of shattered families, careers and personal bank accounts was spelled out at the BSE Inquiry in London, which heard some of the most harrowing evidence from relatives of the dead and dying since it began in March. But hopes of a special national fund were dashed by Dr Eileen Rubery, head of health protection at the Department of Health, who said in a statement: "While the number of new cases diagnosed each year remains at the present level there is no indication for special central provision for this group of patients, and local health and social services departments are expected to provide the medical and social care appropriate for each individual case."

Fifteen relatives lined up to give evidence and the inquiry team, headed by Sir Nicholas Phillips, the Appeal Court judge, heard how victims - all under 50 - were sent to psychiatric hospitals and homes for the elderly because there was no other accommodation. There was also inadequate professional back-up to allow relatives to look after them at home when the disease rendered victims as helpless as babies, the inquiry learned. It also heard a catalogue of complaints that wheelchairs for victims arrived after death, doctors and consultants were unsympathetic and district nurses avoided tending to the victims at home.

In one case, a hospital refused to treat toothache in a victim dying from the new variant of Creutzfeldt-Jakob disease (nvCJD) because it was feared that his blood would contaminate its instruments, the inquiry was told. Even the CJD Surveillance Unit in Edinburgh, which has been at the forefront of raising awareness about the disease, was criticised.

David Body, a lawyer with Irwin Mitchell Solicitors, which is representing the relatives, said that the firm had conducted a survey of the families. He said: "It is clear from our survey that care provision is piecemeal and, whilst acceptable or above standard in some regions, it falls far short of reasonable and acceptable standard in others." Due to the "cavalier approach" by the authorities to care of the victims, relatives had been forced to abandon full-time careers and shoulder heavy financial, physical and mental burdens.

Mr Body said: "This situation can best be alleviated by setting up a central fund from which monies are paid out to the families of nvCJD patients once a diagnosis is suspected, so that they can deliver care to their loved one with the support and supervision of a specialised team, centrally funded, which can assess and set up the necessary systems to ensure the patient is well cared for."


27 Oct 98 - Families urge better care for CJD victims

writes Michael Hornsby

Times ... Tuesday 27 October 1998


A 'flying squad' of nurses would save relatives from struggling alone

Families of victims of the human form of "mad cow" disease called yesterday for government funds for a "flying squad" of nurses to make the standard of care consistent.

A report prepared for the families, and released yesterday, estimates that it costs 40,000 a year to provide the kind of 24-hour nursing required. Since 1995 there have been 29 confirmed cases of new-variant Creutzfeldt-Jakob disease (CJD).

The testimony of relatives was often harrowing, describing the frantic search for information about a disease that rapidly destroyed the patients' mental and physical control.

A solicitor representing the relatives said that while some families got very good care, others were left to their own devices: "It depends on where you live and what time of year it is, whether local budgets have been used up." He said that the report had been sent to the Chief Medical Officer.

The Department of Health said it could not comment directly during an inquiry, but there should be full access to the NHS and social services.

Dorothy Churchill, of Devizes, Wiltshire, whose son Stephen was the first person known to die from new-variant CJD, said: "To relive what happened, and hear the stories was very, very difficult.

"But we have to get it right for people in the future. At the moment it depends very much on your postcode."

The Churchills found care for their son in an old people's home. Stephen's sister Helen said: "We received no help from our local social services or health services. Weeks after Stephen died a wheelchair was delivered to our home. It saddens me to learn that this continues to happen, nearly three years on."

Marie Lawrence, of Redditch, Worcestershire, whose partner, Michael Clifford, died in 1996, said that when his condition was found to be terminal, the hospital said "very abruptly and coldly that they could not do anything for him and they needed the bed".

After giving her evidence, she said: "I asked social services to provide a chairlift for Michael... I was telephoned to say it was ready on the day of his funeral."

Henry Carey described his difficulties in getting equipment from social services in Kent for his wife, Susan, who died in 1997, aged 36. "For weeks Sue slept on a mattress on the floor to prevent her from rolling out of bed as she had no cot sides," he said. "They arrived at the end of February but without brackets.

"The district nursing service was non-existent . I borrowed a commode from someone."

Anthony Bowen, of Manchester, said that two days after the death of his 28-year-old wife, Michelle, in 1995, he went to collect her belongings from the hospital and found her room "was closed and being cleaned by people in full protective clothing ".

Her body was taken to the undertaker in a sealed coffin. But he still could not get firm information about what had killed her. He found out four months later when reporters came to his house and told him that his wife was one of 10 cases referred to in Parliament by Stephen Dorrell, the Health Secretary, as having died of the new strain of CJD.

Beryl Rimmer, whose granddaughter Vicky died aged 20 in November last year, said that a doctor had told her to keep quiet about it. "He said: 'Think of the economy, think of the EEC.' I said: 'For God's sake, this is a child's life.' "

Gerard Callaghan, from Belfast, brother of Maurice who died in November, 1995, aged 30, said he could find no fault with the help they had received. "Maybe we were lucky," he said. "But it should not be a matter of luck".


26 Oct 98 - Families describe CJD horror

by Patrick Mcgowan

Evening Standard ... Monday 26 October 1998


Close relatives told today how their vibrant and active loved ones became strangers as they fell victim to CJD.

The BSE inquiry heard the terrible stories of the relatives of the 27 human victims of "mad cow" disease.

The stories had an awful similarity - of people whose hold on reality inexplicably slipped away.

Witness after witness told how those nearest to them became strangers as their character changed for no apparent reason until, inevitably, the diagnosis of new-variant CJD was made.

The inquiry in south London has heard of cover-up and delay after the disease was first discovered, and many of today's witnesses were angry.

Angela Shepherd, who lost her younger brother, said: "It should not have happened to him or any of the other victims of this hateful disease created by man himself."

She called for action by those in authority so that her brother's death should not be in vain. Jean Haig, whose son Andrew died two years ago at 24, said: "I'm angry about farmers who totally ignored the precautions they're supposed to follow in order to ensure that meat is safe.

"I'm also extremely angry that farmers have been compensated for their loss of cattle . How does one compensate for the loss of my only son, my heir?"

Victoria Lowther was 19 when she died of new-variant CJD. Her father John said of the daughter who had been deputy head girl at school: "The family adored her, she was a very independent teenager with a sparkling, bubbly personality."

The first sign of illness was early in 1996 when Miss Lowther said she felt tired, but then distressing mental signs appeared.

"Victoria started worrying about her job, complaining that the girls were getting at her," said her father. "More than once we heard her crying in the shower before going to work. It was obvious that something was not right."

Tests by doctors proved negative and ME was diagnosed. But Mr Lowther said his daughter grew slower daily, no longer took pride in her appearance and had to be urged to wash her hair and take a shower.

She became angry with her parents and younger brother, pushing them and swearing.

"We had to help her with everything from running her bath to deciding what she was going to wear," said Mr Lowther. "It was almost as if she had gone back to her childhood." In September 1996 a scan showed grey areas on he brain and an expert in CJD questioned her parents.

Mr Lowther said: "She had to be bathed, fed and changed just like a baby. The loss of our beautiful daughter does not make sense and until we can make sense of our deep loss, we cannot come to terms with it."

The inquiry continues.


25 Oct 98 - Blood products ban to curb CJD

by Lois Rogers and Cherry Norton

Times ... Sunday 25 October 1998


The government is to ban the use of British blood products from next month , following fears that they could be contaminated with new variant CJD (nvCJD), the human form of "mad cow" disease.

Doctors will be told that no more products will be made from British blood and that they must switch to American supplies. It follows revelations earlier this year that three of the 29 people who have died of nvCJD in Britain were also blood donors. It is not known if they gave blood after becoming infected.

Blood products derive from a constituent of the blood known as plasma, the fluid which carries red and white blood cells around the body.

The reason for the ban is that plasma also contains white blood cells which, doctors fear, may carry prions , the infectious agents thought to transmit nvCJD.

However, the move does not affect blood used for transfusions. This is derived from single donors and so carries less risk, unlike blood products which can be an amalgam of several donors' supplies.

The use of imported blood has prompted other health fears. Blood donors in America are paid for their donations, meaning drug users regard this as a way of generating extra income. In the past such blood has been blamed for transmitting HIV and hepatitis, forcing medical authorities to introduce rigorous screening procedures.


25 Oct 98 - Families want early care fund for CJD victims

By Victoria Macdonald, Health Correspondent

Telegraph ... Sunday 25 October 1998


The families of new variant CJD victims will tomorrow ask the Government to set up a central fund to pay for the care of patients from the time they fall ill to their death.

In a 26-page submission, the families explain the "hell" they went through in attempting to persuade local authorities to provide them with aid and equipment to ease their loved ones' last few months . Dot and David Churchill, whose son Stephen was the first victim of the nvCJD, said they had asked for a wheelchair which was finally delivered three weeks after he died in May 1995.

The families will give oral and written evidence to the BSE inquiry in London tomorrow and Tuesday. At a press conference following Monday's hearing, many of the families whose lives have been devastated by the disease will make public details of the care package. They want it funded from central Government, and to be "triggered" on diagnosis. It is not intended for those whose relative has died but for families who may yet be affected by nvCJD.

The minimum costs of the package, which are based only on the time spent by a relative looking after the patient, are estimated to be 40,479 a year , but total costs would be likely to run into the millions - or more if there was an epidemic . It includes help with equipment, such as bath hoists, wheelchairs and stairlifts, and nursing help, physiotherapy, and transport to and from hospitals or hospices.

David Body, of Irwin Mitchell, the law firm representing the families of nvCJD victims, said each case would have to be calculated individually. The care package submission was compiled at the request of the families who had found that access to even the most basic requirements, such as wheelchairs, varied widely across the country.

Mr Churchill, of Devizes, Wiltshire, said it had become apparent the care provision was patchy. He said: "It is post code driven. Some people have had superb social services help and there are those who have had nothing to do with them. It has not improved, even though awareness of the disease has improved."

Mr and Mrs Churchill will be giving evidence to the BSE inquiry in London tomorrow. Last night, Mr Churchill said they were pleased at the tenacity of the inquiry so far in obtaining information. His one criticism was for Prof Sir Kenneth Calman, the Government's recently-retired chief medical officer (CMO), who last week told the inquiry that when he had said beef was safe to eat "safe did not mean no risk" .

Mr Churchill said: "The CMO rewrote the English dictionary. He moved safe from a bold statement of something objective. We looked the word up in our dictionary and it said free of risk."

Twenty-nine patients have been identified as having had nvCJD and each of their cases will be looked into by the inquiry. But it is not clear whether the question of aid or compensation will be addressed by the inquiry. None of the families has received central government help and a request to the Tory Government for financial help to nurse the patients was turned down.

The submission for a care package, which has been sent to Liam Donaldson, the Chief Medical Officer, states: "It is clear from these reports and personal communications from the families of the victims that care provision throughout the UK, whilst variable, is uniformly limited. In addition, the support which can be provided by statutory and other bodies set up to provide care and other services to those suffering from nvCJD is wholly inadequate."

The report highlights endless delays in installing necessary provisions such as stairlifts and bath hoists. Mr Body, of Irwin Mitchell, said: "The nature of the disease, the speed of the patient's degeneration, means that the response has to be urgent. It cannot be allowed to rest on whether the local authority has the funds for a stairlift, nor on whether they can install it today or next month or in six months."

Rosemary Statham, an independent care expert, provided some of the estimates for the report, based on interviews with families of patients who contracted iatrogenic CJD after treatment with growth hormone. Mrs Statham found that one health visitor went to the home of a patient on a fortnightly basis at the request of the GP. She said: "Her sole remit, it appears, was to provide the family with incontinence pads. During the late stage of her illness this patient was nursed on a mattress on the floor in the family's living room."


23 Oct 98 - Scientists find method to screen all sheep for BSE

By Roger Highfield, Science Editor

Telegraph ... Friday 23 October 1998


A technique has been developed that for the first time makes it practical to screen the national flock of 42 million sheep for mad cow disease.

So far only nine sheep have been checked for BSE, says Prof Jeffrey Almond, a member of the Government's spongiform encephalopathy advisory committee, SEAC, He urged the Government to test the national flock "as a matter of urgency".

British sheep may have been fed BSE-infected bonemeal made from cattle which had the disease until at least 1988. Two years ago it was confirmed that BSE can be passed to sheep through their food.

Until now there has been no simple way to distinguish the effects of BSE on sheep from those of scrapie, a related spongiform disease that has affected the national flock for centuries with no apparent consequences for human health.

Today, in the journal Neuroscience Letters, another SEAC member, Prof John Collinge, and colleagues at St Mary's Hospital, London, working with the Central Veterinary Laboratory, Weybridge, Surrey, publish the results of a preliminary survey to establish a new screening method . Their work demonstrates that "molecular screening" for BSE in sheep should only cost a few pounds per test.

Currently, the "gold standard" method is a bioassay, which involves inserting suspected infectious tissue into the brains of laboratory mice and observing them.

However, it takes two years for the mice to succumb to the disease, under careful observation and carefully controlled conditions. The overall cost, approaching 30,000 per sheep, and the time, makes the method impractical to use, said Prof Collinge.

The new method is based on a type of test called Western Blot analysis, which smashes up the abnormal prion protein thought to cause the disease into fragments and detects different strains by the different pattern of fragments.

More work must be done to perfect the test but "it looks as though it is going to be an effective means of differentiating BSE in sheep from sheep scrapie", said Prof Collinge. Recently, another method with the potential for mass screening was announced by the Nobel laureate Prof Stan Prusiner, Dr Jiri Safar and colleagues at the University of California, San Francisco.


22 Oct 98 - Data on BSE 'blocked by secrecy'

By David Brown, Agriculture Editor

Telegraph ... Thursday 22 October 1998


The Cabinet Office was alerted to the dangers of mad cow disease only when the first person died in 1995 from a new form of brain disease linked to BSE, a leading scientist said yesterday.

BSE was discovered in cattle 10 years earlier. Sir William Stewart, chief scientific adviser to the Cabinet Office from 1992 to 1995, told the BSE Inquiry that the Ministry of Agriculture rejected his advice that it should make use of independent experts to help tackle the BSE epidemic and "did not keep me up to date with what was happening".

One of the experts he had in mind was Prof Roy Anderson of Oxford University, an authority on epidemics, who has criticised the ministry for using flawed statistics in its attempts to control the outbreak.

Prof Anderson told the inquiry in March that 250,000 cattle had been infected needlessly with BSE because a "culture of secrecy" in the ministry had prevented him having access to important data. This prevented him correcting flaws in the ministry's disease control efforts.

BSE was discovered in 1985. Twenty nine people have died from a new variant of Creutzfeldt-Jakob disease which has been linked to BSE. News of this link was made public on March 20, 1996, which led to the EU's global ban on British beef.

Sir William said: "BSE was a highly sensitive issue with implications for the food and farming industries and to some extent the secrecy surrounding the issue was understandable."


22 Oct 98 - BSE official hits back at Calman

By David Brown, Agriculture Editor

Telegraph ... Thursday 22 October 1998


The Government's former chief veterinary officer, Keith Meldrum, yesterday defended his role in the mad cow disease affair following criticism by Sir Kenneth Calman, the former chief medical officer.

In a 290-page statement released by the BSE inquiry in London, he says that Sir Kenneth said in November 1995, only four months before BSE had been officially linked to brain deaths in people, that "we had done all that was needed to safeguard public health... beef continued to be safe".

The statement, to be presented to the inquiry on Monday, is the longest of any witness so far. Last Monday Sir Kenneth criticised Mr Meldrum for "understating" the importance of the failure of abattoirs to remove specified offals from beef carcases before they were sold for human food.

Mr Meldrum described how he had clashed with ministry officials about the tone of press statements relating to the safety of beef. He said he wanted to tell the public that some high-risk offals could have entered the food chain , although they should have been removed.

"The ministry clearly felt that was a step too far for them and wanted to change that," he said. Defending his statements at the time that beef was "safe", his statement says: "In ordinary usage, safe does not necessarily mean 'no risk'."

Relatives of people who died from the new variant Creutzfeldt-Jakob disease, the human form of BSE, are expected to attend Monday's hearing when Mr Meldrum will be cross-examined.


21 Oct 98 - Government 'had no plan to cope with BSE disaster'

By David Brown, Agriculture Editor

Telegraph ... Wednesday 21 October 1998


The Government made no plans to protect the public if scientists found "mad cow disease" could be caught by humans, Keith Meldrum, former Chief Veterinary Officer, admitted yesterday.

"It would have been the equivalent of planning for a disaster," he told the BSE inquiry in London.

So far 29 people have died from a new variant of Creutzfeldt-Jakob disease which has been linked to BSE in cattle. BSE was discovered in 1985 and ministers were informed in 1987 that it was a fatal new cattle plague. The announcement on March 20 1996 that scientists had linked BSE with a new variety of CJD in young people provoked the beef crisis and the European Union's international ban on exports of British beef.

Asked by Sir Nicholas Phillips, the Appeal Court judge heading the inquiry, whether any contingency plans were put in place up to March 1996 in the event of evidence being found that BSE could be transmitted to humans, Mr Meldrum said: "No." That was a scenario that was virtually impossible to discuss in a sensible way because of the extreme nature of the issue, he said. All actions taken were based on the best scientific advice.

He said: "It was frankly too difficult to predict... you are having to plan for a disaster situation." On the evidence available, he dismissed any connection between BSE and spontaneous outbreaks of CJD in farmers but was worried about cases of CJD in young people.

"The issue of CJD in youngsters raised a new dimension... it would be very difficult to plan ahead," he said. But he disclosed that in June 1990 the Government considered slaughtering all cattle in the UK after an EU threat to the home beef trade emerged. He described how he, John Gummer - then Minister of Agriculture - and Richard Packer, Permanent Secretary at the Ministry of Agriculture, talked through the night at an emergency meeting in Brussels. One option considered was the slaughter of the national herd - but they decided against it because BSE had not been found in beef muscle.

If BSE had been found in muscle "it would have raised a totally new scenario", he said. But he said: "We had to work on the basis of the evidence at the time."

This meeting followed alarm in Europe after the news a month earlier that a BSE-like disease had struck a Siamese cat. Mr Meldrum's handling of the cat incident in the media was attacked at the time in a confidential memo sent by Dr Gerald Wells, the Ministry of Agriculture's head of neuropathology, on May 11, 1990, as "unfortunate" and "inappropriate" . He claimed Mr Meldrum's public reassurances about the incident amounted to "an over-optimistic response which may... result in a loss of credibility for the veterinary profession in this whole sensitive subject area".

Julie Sheppard, public affairs spokesman of the Consumers' Association, said after the hearing: "It was absolutely astonishing that as late as March 1996 when it was finally conceded that BSE could infect people that no contingency plans were in place - even though the possibility was discussed by Government officials".

The BSE inquiry team said yesterday that it was pressing the Ministry of Agriculture to release the so-called North Report - an internal document which is said to trace the history of the BSE epidemic and pinpoint blunders.


20 Oct 98 - Former chief vet refuses to hand over BSE tape

By David Brown, Agriculture Editor

Telegraph ... Tuesday 20 October 1998


Keith Meldrum, the Government's former Chief Veterinary Officer, yesterday refused to allow the BSE inquiry to study a taped interview in which he gave his views on how past ministers handled the events leading up to the beef crisis.

Mr Meldrum, who was chief vet from June 1988 until March 1996, told the inquiry in London that the tape contained "personal" information about himself, his family and colleagues in addition to his views on ministers, including John Gummer - who was minister of agriculture from 1989 to 1993. He said: "Some of my comments might be of great interest to the media."

Inquiry officials later confirmed that the Ministry of Agriculture (Maff) had also refused to hand over an internal report on the handling of the bovine spongiform encephalopathy crisis despite a request from Downing Street at the outset of the investigation that all Government departments should give their full co-operation . The inquiry has no powers to seize evidence.

Mr Meldrum's decision to block access to the tape emerged at the end of his first day of evidence in which he denied taking part in any cover-up over BSE. He also insisted that the Government should be open with the public so that it could make up its own mind about the risks of eating beef.

The tape is a record of a confidential interview by the Department of Psychology at the University of Surrey as part of an exercise carried out for the Government's Food Safety Directorate to assess attitudes towards risk assessment among senior civil servants . He was re-thinking his decision last night after Sir Nicholas Phillips, the inquiry judge, said that his team was interested only in "the different attitudes to communication with the public" which ministers and civil servants had at the time.

The ministry has also refused to hand over a report written by David North, a Maff official, on the history of the BSE epidemic. It is alleged that it identifies ministry blunders . Inquiry officials said last night that they would be considering the ministry's reasons before deciding their next step.

Sheila McKechnie, the director of the Consumers' Association, said: "If evidence is being withheld , there is a danger that the effectiveness of the inquiry will be undermined."