Annie McVey doesn’t write Christmas cards. Since the death of her daughter Claire, aged just 15, almost two decades ago, the festive season has served as a painful reminder of her loss.
Instead, every year as it approaches, Annie sits at her computer and taps out letters. Occasionally the list of recipients’ changes, but for the most part it remains the same. John Gummer, for instance, Agriculture Minister in John Major’s cabinet, now serving in the House of Lords as Lord Deben, is ever present.
The content varies little. ‘I email a picture of Claire, just a reminder that at this holiday time when you are sitting down to your Christmas lunch we are not because of the decisions you made and I hope any further decisions you make are with that in mind,’ says Annie, a a former nurse who now works within the Ministry of Justice.
‘Decisions have consequences,’ she adds.
For as far as Annie, now a 61-year-old grandmother, is concerned, the Government’s poor decisions and failure to act on evidence that a deadly disease in cattle could pose a risk to human health stole her bright, happy and independent daughter’s future.
Claire McVey was the youngest recorded victim of vCJD, an incurable degenerative brain condition caught by eating beef from cattle infected with bovine spongiform encephalopathy (BSE), otherwise known as mad cow disease
When she died in January 2000 — just six months after being taken ill — Claire McVey was the youngest recorded victim of variant Creutzfeldt-Jakob disease, or vCJD, an incurable degenerative brain condition caught by eating beef from cattle infected with bovine spongiform encephalopathy (BSE), otherwise known as mad cow disease.
It remains Britain’s biggest ever food scandal and fears remain that a second wave is on the horizon — with devastating consequences. It’s a worrying prospect that’s explored in a hard-hitting documentary on BBC2 tonight.
Claire never got the chance to forge a career, plan her wedding or have children. Instead the girl who her mum laughingly states would have been a ‘bridezilla’, given the chance, planned her own funeral.
‘She wanted the whole sleeping beauty thing, centre of attention and why shouldn’t she?’ asks Annie, her voice cracking.
‘She wasn’t going to have a wedding, so that was her day. It was glass coffin, lying on rose petals, flowers in her hair, the whole caboodle. It was heartbreaking.’
Annie’s agony is shared by the 177 other families who lost loved ones to this incurable disease. The last of those deaths was in 2016.
A picture taken on March 26, 1996 shows a deserted Smithfieald meat market in the City of London, at the height of the epidemic
But time seems to have faded our memories of a debacle that cast its shadow over the dinner table for much of the 80s and 90s.
Memories of news footage of cattle stumbling to their knees under the influence of a deadly new neurological condition — followed later by painful clips of human victims displaying similar symptoms.
But there is no danger of the crisis being forgotten. Even now anyone who lived in Britain for more than six months between 1980 and 1996 is banned from giving blood in most parts of the world because of the risk associated with blood-borne transmission of vCJD.
That statement acts as a codicil in tonight’s programme, exploring what remains a health crisis of cataclysmic proportions. Could there be a starker reminder that questions remain about the future cost of mad cow disease? Could there yet be a second wave of deaths among the thousands thought to be unknowing carriers of the disease? Could any relaxation of regulation in food and agriculture lead to a similar scandal?
That is what many victims’ families and campaigners fear. Scientists have long said the disease could have an incubation period of up to 50 years.
Great Warley Hall farm in Great Warley, Essex, where Ministry of Agriculture workers were building a funeral pyre for approximately 150 dead cows before setting fire to them
Evidence also suggests people previously thought to be immune could fall prey. It’s a ticking timebomb and nobody seems to know if it will go off.
In Mad Cow Disease: The Great British Beef Scandal, Richard Knight, Professor of Neurology at the CJD Surveillance Unit in Edinburgh, warns: ‘There is still so much uncertainty. And one of the things that is uncertain is how many people in the UK are silently infected. I have to say we are simply not sure, but every prediction suggests there are going to be further cases.’
Claire was a baby when the mysterious death of a dairy cow on a farm in West Sussex in 1985 became the first sign of the disaster to come.
A post-mortem would reveal the cow’s brain was riddled with holes, like a sponge, prompting frantic investigations to discover the source — vCJD didn’t even have a name until a year later, when it was growing exponentially.
It soon emerged that under pressure to produce more meat, more quickly and at lower costs, the farming industry had turned to something called bone meal: powdered feed made from ground down cattle carcasses.
The herbivore cow had been turned into a cannibal.
The practice was banned in July 1988, but by the end of 1989 nearly 10,000 cattle at more than 5,000 farms had tested positive for the disease, with fears that one million infected cows had already entered the food chain.
It was also the era of mechanically-recovered meat, a nauseating process of bolstering products with ground up animal carcasses. Margaret Thatcher, meanwhile, had dispensed with requirements ensuring the nutritional content of school dinners — leaving children most at risk.
The Government continued to assure the public that British beef was safe. Agriculture Minister John Gummer was even filmed offering a burger to his four-year-old daughter Cordelia (it was too hot, so she didn’t eat it).
Scientists who spoke out were ridiculed, with dire predictions of an epidemic that could kill thousands branded scaremongering.
Retired microbiologist Stephen Dealler was one such expert, working with Professor Richard Lacey, the Leeds University medical microbiologist who first alerted the public to the link between BSE and its human equivalent.
‘As the disease progressed, we could make better calculations,’ he says. ‘I did the statistics and it came out that we were eating about 800,000 infected cattle.’
Speaking to the Mail, he adds: ‘At that time, anyone who wasn’t working with the Government was looked on as being a bad person. It was pretty awful and researchers all over were experiencing the same thing. After I spoke out, I got moved from a research lab to a place where I couldn’t carry out further research. It went on for about five years.’
Yet he was also receiving calls from within the agricultural corridors of power, telling him ‘don’t let it drop’. His fears were realised in 1995 when the first human succumbed to the disease, a fit young A-level student named Stephen Churchill.
By the time Health Secretary Stephen Dorrell announced in March 1996 there might indeed be a link between BSE and CJD, there had been seven more deaths and public faith in the farming industry and Government ‘safety’ measures were in tatters.
Eventually 4.4 million cattle were slaughtered to beat the disease.
At her home in Devon, Annie McVey was raising Claire and son James and paying careful attention to the headlines. ‘I’m vegetarian so they had less meat than most families would, but when I heard about concerns, I said if you are going to have sausages, it’s going to be pork, we are not taking that risk,’ she says.
Now she finds herself looking back at family photos of children’s parties, surrounded by sausage rolls and party food — when food standards were lower — wondering ‘was it then?’
And if it was, why her and not him, why not another child? ‘It’s the same for my son — he was at those parties, too, he had the same genetics.’ The onset of the disease in 1999 was swift.
Claire had returned from a school skiing trip with the dubious accolade of being the pupil who fell over the most. But within weeks what had appeared to be teenage mood swings and unexpected clumsiness had become something much more alarming.
Not content with a GP prescribing anti-depressants for her daughter, Annie pulled in favours and got Claire seen by a paediatrician at the hospital where she worked. Two hours later they were on their way to see specialists in Bristol.
‘Every day she would have another test,’ says Annie. ‘They went through a list of neurological conditions — it’s not this, it’s not that, all you are left with is this [vCJD].’
Two weeks after first going to hospital, Annie read the suspected diagnosis in her daughter’s notes. She never gave Claire a name for her condition; the teenager, who lost her mobility, then her speech, then the ability to focus, just knew she was very unwell.
‘I’ve got a poorly brain,’ she says in heartrending video footage that will be shown tonight, along with other clips that document her progression from vivacious teenager to a ferociously determined, but evidently ill young woman.
‘She did ask if she was going to die,’ says Annie. ‘I said, ‘what makes you ask that?’ She said, ‘I just feel so awful’. I told her, ‘it’s one of those things that’s on the list [when diagnosed with vCJD]’. She replied, ‘well, I better plan my funeral then because I don’t want you messing it up’.’
And that’s what she did, one in the hospice where she died on January 11, 2000, and a second larger affair for everyone she knew. ‘At the time she was the youngest in the world, out of six billion people in the world, it chose her,’ says Annie. ‘Why these people? They don’t have a particularly weird genetic make-up. That’s the big question.’
Creutzfeldt-Jakob disease is degenerative, and riddles the brain with tiny holes. The exact cause is unknown, but it is believed to be spread by prions, abnormally folded proteins that accumulate in the brain and kill nerve cells.
Until 2009, all cases of vCJD had been in victims with one form of the human prion protein gene known as MM. There are three variations, and 42 per cent of the population is in this group. Then came the death of 30-year-old Scot Grant Goodwin. He had a variant of the gene known as MV.
MV types make up 47 per cent of the population, but they seem to be more resistant. The evidence comes from a British research project in Papua New Guinea into another prion disease, Kuru — a major cause of death in a group who practised cannibalism.
Some MV type Kuru sufferers were reported to have incubated the disease for more than 50 years. Grant’s death gave new credence to incubation fears, with a second MV victim dying three years ago. Only the M form of the protein can be deformed by the BSE prion, which may explain the longer incubation.
As Grant’s father Tommy Goodwin, 58, states in the film: ‘There is a second wave just round the corner of this illness and the people who are incubating this haven’t got a clue.
‘I could be incubating it, Grant’s mum Margaret could be incubating it. You could be incubating it. You’ll never know until something happens.’
Such fears have lessened slightly for Stephen Dealler, with reports of the disease dropping around the globe. ‘I hope it’s going away, but we don’t know,’ he says.
Christine Lord, a journalist whose son Andrew died of vCJD in 2007 at 24, remains gravely concerned. She’s been campaigning to find out what the Government knew about BSE and when. In 2000, a inquiry delivered a searing indictment of Whitehall’s failure to respond to the threat.
A documentary on which she worked — Cows, Cash & Cover-ups? Investigating vCJD — was released this year on Amazon Prime and features in the Royal Academy of Art’s Summer Exhibition. She has also written a book called Who Killed My Son?
She points to research from 2013 that found at least one in 2,000 people in the UK carries an abnormal protein linked to the human form of mad cow disease.
Experts said their study has ‘important implications’ for how blood and blood donations are managed and for the handling of surgical instruments — which have been found to bear traces of prion even after being sterilised.
Christine says: ‘We are still recycling this disease within the human population — and the animal population. BSE was found in a cow in Aberdeen last year.
‘Mad cow disease is a ticking health timebomb for generations. Our blood donors, medical procedures, food, pharmaceuticals, every part of the public’s lives is tainted with the threat of BSE.
‘Yet not one Government agency, politician or expert has ever been made accountable for millions at risk, hundreds dead and thousands disabled.’
There have been no deaths since 2016, when a 36-year-old man who had developed symptoms two years previously died. He was type MV. Before that there had been only one death since 2012.
The toll appears to be dwindling — but what lies around the corner remains unknown.