An unthinkable death
IT was the shoes that did it. Annie McVey had known something was wrong with her daughter. Claire was stroppy, she had stopped eating with the family and was so clumsy it was like having a puppy in the house; knocking over coffee cups, smashing phones. Things kept getting broken. For God's sake, they said, be more careful, can't you? Her mood swings were so wild that no one was too surprised when she stabbed the coffee table with a pen. 'I hate you,' she said, with a venom that scared her mother. But Claire was 15 and this was a bad case of fifteenitis, Annie thought grimly. Trust her feisty, opinionated girl to have the Krakatoa of all adolescences.
And then that morning Claire came down and announced that she wasn't going to wear her new shoes to school; she thought she might wear trainers instead. And Annie knew. The flutter of mother's instinct suddenly like a flock of seagulls rising. There had been so many battles in shoe shops down the years - Claire holding out for Himalayan wedges, Annie arguing for something a little more down to earth. She knew her daughter wouldn't surrender her footwear lightly. 'Why don't you want to wear your shoes?' 'I just don't feel safe coming down the stairs, that's all.'
Annie McVey was a nursing manager with the Northern Devon Healthcare NHS Trust, so she knew who to ring. Come down to the ward, they said, and we'll squeeze you in. Because she was a nurse she knew right away. The mother watched as the paediatrician began his neurological examination. 'Claire, can you rub your heel against your shin?' She couldn't on one side. ('That's deficit,' Annie thought.) 'Close your eyes,' he said, 'and touch your nose.' She couldn't. ('That's abnormal.') Nor could she stand upright with her eyes shut without wobbling. ('That's not right.') And then Claire refused to co-operate: 'Cos I can't. Cos I can't.' Like a toddler stuck in mid-tantrum.
'Are we thinking brain tumour?' Annie asked when Claire was out of earshot, and the doctor said, 'Yes, I think so.' Mother told daughter they would have to drive to Bristol for a scan because the doctor thought she had something on her brain or her back. 'Do you mean a brain tumour?' Claire asked, and Annie said that was probably what they were looking for. Claire seemed almost relieved. 'It was as if she thought, "Oh, there's a reason why I'm feeling like this." '
They stopped at home on the way to ring Claire's stepfather and to break the news to James, Claire's brother, and Wayne Lee, Annie's new boyfriend, and to pick up a nightbag, just in case. Claire asked her mother if they would have to operate and she agreed it was a possibility. They made the first of their deals. 'If Claire had to have her head shaved, I'd have mine shaved as well.' It was August 3, 1999. Two days later, a brain scan at Frenchay Hospital revealed no tumour, but showed some subtle changes. 'I thought there can be three reasons for those changes,' Annie recalls. 'It's infection or metabolism or something genetic. Well, genetic was unlikely by Claire's age, she had no other signs of infection, so it had to be something metabolic.'
Claire had walked into Frenchay, but a fortnight later she left in a wheelchair. It was as though being admitted to hospital had finally allowed her to admit the truth to herself. Annie had always known her daughter was intensely private and proud; now, she began to grasp the lengths she had gone to to hide her deterioration. All those jagged shifts in behaviour made sense. Only recently, a relative who phoned to ask if Claire could babysit had hung up in disgust because he said she was drunk (her speech was already slurring).
Annie, who had tentatively asked her daughter about anorexia and been rebuffed with a stout, 'You must be joking', discovered that Claire had actually been avoiding family meals because she was having trouble swallowing. And Claire's solitary evening runs, it turned out, were an attempt to build up strength in the legs which were so unaccountably failing her. As for that spooked look she got in the eye of her tantrums: 'I thought it was rage; now I could see it was terror.'
The night they got back from the hospital, Annie and Wayne, an ambulance paramedic, trawled the internet looking for neurological disorders that fitted Claire's symptoms. One kept coming up: new variant Creutzfeldt-Jakob Disease (nvCJD). Believed to be caused by an abnormal form of brain protein, nvCJD was increasingly seen by scientists as being the human form of bovine spongiform encephalopathy (BSE). At least, Annie McVey thought, it's not that. Annie's job at the Trust was risk adviser, for heaven's sake; if anyone knew about medical odds it was her. Statistically, the chance of her child contracting mad cow disease - well, it was practically science fiction, wasn't it?
As the tests on Claire continued, specialists ruled out some of the nastiest and grimiest spanners in the human works. 'I told her, whatever you've got you are really rare, and she quite liked that,' Annie says. 'She'd always felt different and special - well, she was different and special - but with being rare comes all the stuff like, "we can't give you a treatment".' Not long after, Annie dived into a hospital loo and opened the doctor's note she had been given to deliver to another consultant. Inside was an incredulous scrawled query: 'McVey: nvCJD!!???'
Mother and daughter made another deal: 'I told her I would always be truthful and that I would never ever leave her.' And she never did. (Even at the graveside in January, Annie remembers thinking she had to take Claire home. You can forgive her confusion: it had taken her daughter less than five months to die.) It was as though someone had put a tape of Claire McVey's childhood in the video and held down the rewind button. The years ripped past, from skiing holidays and blooming sophistication all the way back to nappies and broken nights. 'When Claire was little, every day she could do something more; with CJD, every day she could do something less.'
Only two months earlier, in May, just before Claire turned 15, she had stood in the kitchen as her mother made dinner and said, 'When I'm 16, Mum, I'll be able to have sex.' 'Well, you don't just become 16 and have sex,' snorted Annie, and Claire laughed and laughed; she enjoyed teasing her mother. In fact, she had pretty firm views about boys - you didn't want to be getting yourself into that kind of thing too young. Claire was everyone's mate, but there was still no boyfriend. Wayne reckoned the lads were intimidated by the smart, funny girl: 'She would torture them. Couldn't help herself coming out with these one-liners.'
And her beauty must have been daunting too. Recently, she had shot up to 5ft 10in and was on course for a supermodel six foot. Blonde with blue eyes, milky skin and a generous mouth, Claire McVey was a rambling English rose. So, when it came to the moment for facing facts - for saying what Claire's real future would be, not thinking of all her possible ones - her mother dug in her heels. 'The consultant and the ward sister took me into the office and I said, "I am not grieving for her until she's dead." And they said, "Don't you understand what we're saying, Mrs McVey? This is a progressive neurological disorder." I understood perfectly. Yes, she was going to die. Yes, it's going to happen in months not years. Yes, there was nothing they could do about it. But I'm not grieving for her while she's alive.'
After that, the family got a new rule: no tears in front of Claire. If you wanted to cry, you left the room.
Almost any other disease, and mother and child would have had a fighting chance. But the enemy was no longer around to be engaged: it had planted its bomb maybe a decade ago, lit the slow-burning fuse and quit the scene.
All that remained was to manage the surrender. Annie got hold of a voice box so that Claire, whose speech was failing every day, could record some favourite phrases for use later on. They included 'Bugger off' and 'I love you'. By the end, that pretty much covered what any human being needs to say to another.
Seventy-five people have died so far of variant CJD (the 'new' prefix no longer applies). As epidemics go, it's been pretty quiet. After the doomy headlines of the mid-Nineties, when three million cattle were burnt in a bovine Valhalla and humans were said to be heading in their thousands for the same fate, the BSE crisis has slowed to a trickle of scare stories about school food (could this have been a key source of infection in the late Eighties?), the so-called Queniborough cluster in Leicestershire and, most recently, the safety of dental instruments.
Driving on a balmy summer's evening from Barnstaple to Kentisbury Ford to meet Annie McVey, I try to imagine what I would feel if it were my child who was one of the 75 dead - or only 75 dead, as the living tend to refer to them. Around the Devon hamlet where the McVeys live, England is at her most voluptuously come-hither. The hedges are high and creamy and in the fields the cows swish, dreamy with contentment. On one five-bar gate, I spot a torn Union Jack poster with a slogan: 'Support British Beef!'
The BSE crisis had the distinction - some would say the disastrous drawback - of being bound up with a product that was not just made in Britain, but at some gut level was felt to be the stuff of which Britain was made. By extension, variant CJD - a beastly disease in every sense - became an unpatriotic outrage almost before it registered as a source of human suffering. To stand up against it, to proclaim your disbelief in it - and to mock the joyless health inspectors who tried to monitor what went in our fridges - was to fly the flag. To succumb to it, on the other hand, was a source of secret shame. 'Best not mention it,' a mother on Merseyside, whose son was among the first to die, was told.
Another family held out for their boy to be buried after the authorities insisted on cremation - as if wanting to erase all trace of him, like a Plague victim or, indeed, a mad cow. The family's priest had to intervene when they were told that the police would come and impound the body. 'I'll bring this man to the church,' the priest said, 'and keep him in the church.' Eventually, a compromise was reached: the grave was lined with lime and the ceremony monitored by two council officials in white coats. 'It's just as if they punished him for something,' the boy's mother said. He had died of a disease that wasn't meant to exist.
'I don't have any problem with the farmers, except when they go round saying BSE has nothing to do with vCJD,' sighs Annie McVey. 'I know a lot have killed themselves because of money worries and I don't want to get into a debate about whether my daughter's life is worth more than a farmer's life - that's just hideous.'
We are talking in the sitting-room of the McVeys' 200-year-old cottage. It is a pretty room - cream sofas, coral cushions, stripped pine - in a pretty house, but the place has a spectral, unlived-in air. It was only a few days after they moved in that Annie drove Claire to the hospital and since then womanly touches, you guess, have been reserved for a child's brow rather than soft furnishings.
The hush of the countryside is broken occasionally by the arthritic creak of a door as James, Annie's 19-year-old son, moves between the kitchen and the television room. A tall, gentle hangdog figure, James, according to his mother, has burrowed even further into himself since Claire died. 'The other day, he told me, "When I'm out I tell myself she's at home and when I'm in I tell myself she's out with her mates." ' James loathes the freakish circus that surrounds a vCJD death - reporters at midnight, a public inquest - and cringes at the letters from research groups around the world begging tissue samples from mother and son. 'There'd be nothing left of us if we gave a bit to everyone,' says Annie. 'This time last year, I felt I had everything; I had two children I'd brought up who were not on drugs, not smoking, not pregnant, doing well in their education, a new home, a loving partner and then.'
Claire McVey was about as unfortunate as you can get in this life, but she had one great piece of luck - her mother. Variant CJD is hard to identify in the early stages and the majority of sufferers have been misdiagnosed and treated for depression. Petrified youngsters have ended up in mental hospitals or on wards for the senile. 'Nobody can believe Claire's case was spotted so quickly,' says Wayne, who has just come in with a tray of coffee. 'That's because of Annie.' Wayne - a droll Devonian Tom Cruise - sets the tray down on the table in front of us, which still bears the livid scar that Claire made in it with a pen. 'She would become hugely aggressive,' says Annie, 'but the eyes gave her away. They had this look that said, help me, Mummy, I don't know what's going on here.' Annie didn't have time to be terrified herself. 'I suppose it was scary knowing what the average mother wouldn't know. But it also made it much easier, because I was able to warn Claire prior to everything. I had to prepare myself so that I was prepared to prepare her.'
By the time Claire had returned home at the end of August, her balance had completely gone, leaving her with that cruel, drunken vCJD gait. To try and get across the sitting-room, she would grab the oak beams that run the length of the ceiling. 'She's even taller than me,' explains Annie, 'so she can hold on to those.' (I notice Annie often starts talking about Claire in the present tense; then comes an almost audible click as the brain updates itself and she remembers to put her daughter in the past.)
Annie McVey cries like someone who has had a lot of practice. She weeps fast, efficiently, palming the tears to the side of her cheeks with a single downward sweep of the hands. When I say Claire sounds like an incredibly proud person, she nods so fervently that her tears spatter like rain against my face. 'Dignity was the thing with Claire all the way through. The first time she crawled in here I thought my heart would break because I knew if she was crawling in front of anyone she had to be desperate.'
The girl who had loved drama at school now put on a show at home. When her friends came to visit, Claire would be carried upstairs and arranged to receive them. There was always a pile of sandwiches, but Claire's dribbling had got too bad to eat in public. Mother and daughter had codewords for these occasions. 'There was one to tell me she needed to go to the loo and I had to discreetly get the girls out so I could carry her to the commode hidden next door.' Another signal let Annie know Claire was tired. 'I would come the heavy-handed parent and say, "Time you all went!" And Claire would protest, "Oh, Mum, not yet." She really ran things just so. I think she didn't want to frighten them.' And, perhaps, by being the Claire they knew for just a little longer, not frighten herself.
Mother and daughter - now nurse and patient - talked a lot about pain, at least the kind you could dose from a bottle. When Claire confessed she was worried what would happen when she couldn't swallow any longer, Annie gave her the options: a tube into the stomach or one up the nose. ' "Oh, I couldn't bear one up my nose," she said, so at least I knew what she wanted.'
They often say of men that they had a good war; well, Annie McVey had a stirring defeat. She managed her daughter's dying with a combination of high professional skill and low cunning. When they told her she couldn't have an electric bed, she asked for one on trial, knowing full well that Claire would be dead before it was time to hand it back.
The disease was so rapid that officialdom panted to keep up. Overnight, Annie McVey had gone from healthcare provider to consumer and was dismayed by what she found. 'Certain individuals were wonderful, but there was a total lack of initiative from departments, they couldn't extend beyond known procedures. I'd ask for a suction machine and they'd say, she doesn't need one yet and I'd say, well, if she starts choking in the middle of the night she will.' Annie is defiant about the bruised toes she left in her wake. What concerns her is the other vCJD families who have no chance of working, let alone beating, the system. I ask Annie how she views the handling of the BSE crisis: 'Economics first, politics second, humanity third,' she snaps.
Isn't that the way of the world?
'You know, Allison, I'm not some Mad Cow Mum. I may be full of rage some days, but I absolutely understand the desire to preserve the status quo. But they made a bad mistake. They saw that BSE could jump the species barrier and they decided to take the risk that it wouldn't jump into humans. People complain about the Nanny State telling you not to smoke, not to drink, but what about the Nanny State that takes a decision not to give the children a piece of information about risk because they're not to be trusted with it? They'll only go and panic. Personally, as a parent I reserve the right to panic if there's something in the food chain that can kill my child.'
I tell Annie that a civil servant friend of mine maintains that the business of government is heartlessness and she makes a stung sound, like a wasp hitting a window.
If they'd said there was a tiny risk, they would have collapsed the beef industry, wouldn't they?
'It collapsed anyway and look at the cost.'
From a table by her side, Annie produces an album of portraits taken last October when she and Claire went up to London, paid for by the people of Ilfracombe. To me, the pair look like an advert for radiance, but Annie knows better: 'She can't sit up straight there, I'm helping her balance. And this is three months after we know she's ill. Her eye is a bit droopy already and that smile's not natural. She's having to make that smile because her face isn't working.' I say Claire looks dangerously minxy and Annie laughs, the first time I have heard that sound. 'I said to her, "I want to know where you learnt to give that naughty over-the-shoulder look, my girl!" '
It is the older woman in the pictures that I find it hard to stop staring at - a fine-boned Cherie Lunghi type with glossy hair and hazel eyes. Eight months on, the woman beside me is the ghost of her former self. The huge eyes are buried in mauve sockets, the frame skeletal - she looks like one of those Sienese Madonnas, gaunt with the burden of love.
You look lovely in those pictures, Annie.
'A vaguely healthy human there,' she laughs again, but without pleasure this time.
What was Claire like when she was little?
'Oh, big reader, total chatterbox, show-off. Opinionated, independent to the nth degree.' Annie moves her head as though trying to dislodge an idea that buzzes in there. 'I look back at photographs of her fifth birthday and I think, did she have it in her brain then? When she's smiling at the camera, did she have something that would kill her in 10 years' time? They think it was probably controlled by 1989/90, so up to the age of six she could have caught it. And I look at the pictures of her at parties back then and I think, did she eat a sausage roll? Is it then? Is it then?'
Claire Louise McVey was born on May 29, 1984, in Liverpool. When she was three months old, her mother became a single parent after the McVeys' marriage broke down and Claire's father walked out. Annie McVey herself came from the kind of home where it paid to read the signs, and she has never lost that habit of looking out for trouble and trying to head it off. She prepared almost fanatically for her own children's upbringing, reading all the books and even buying New Scientist. James and Claire both had natural pureed fruit and vegetables, no salt or sugar. Sweets only at the weekends. 'Neither of them has fillings.' Click. 'Had fillings.'
Claire informed her mother that when she grew up she would get married and have a big house with a little house for her mummy down the bottom of the garden and a husband who was going to stay home and look after the children who, by the way, would be twin girls. 'Your husband might not want to stay home and look after the children,' cautioned her mother. 'I wouldn't have married him if he wasn't willing.' Not surprisingly, this natural rationalist intended to become a lawyer - in America, because she reckoned they got to argue more in that system and she was game for a fight was Claire.
When we are first born, our mother is our whole world; as vCJD claimed Claire McVey, her world shrank until, once again, Annie's was the only face in it. Over the weeks, her tastes grew more childlike. The teenager began watching the video of Anastasia - bloody Anastasia, Annie calls it - over and over. When Annie and Claire travelled to Disneyland in Florida, paid for by local wellwishers, the 15-year-old would suddenly get agitated and her mother would take her into a toy shop where she could hold the fluffy animals, and that would soothe her. One morning, Claire woke and said, 'Mummy, if I'm in a coma and they come to you and say there's a cure but it's really painful, no matter what it is and if they ask your permission I want you to say yes. Because I want to live.' Annie pauses. 'And she did. She desperately wanted to live. I'm sorry.'
In the final stages of vCJD, Claire McVey became profoundly disinhibited - a polite word for rude. On Christmas Day, her skin was so sensitive she kept trying to take her clothes off. Annie undressed her, laid her on the sofa where we are sitting, and covered her with a sheet.
'I said, "Right, I'll bring your dinner in here," and she said, "I don't want any ffffff-fucking dinner." And as that f-word was coming out, I was so shocked because Claire never ever swore. She'd tell off James if he said "crap". I said, "For goodness sake, just say you don't want it." But in a way I was glad, it was a moment of normality; for a second she was just a stroppy teenager again.'
On the morning of January 10 this year, Claire woke her mother, who was sleeping in the bed next to her, by patting at her face and forming the sounds for yogurt. By this stage Claire had been moved to Little Bridge House hospice, near Barnstaple. 'We were lucky,' says Annie. 'I've talked to some of the other families and their children stopped being able to recognise them. That must be hard to bear. She knew me until the end.' The next day Claire died. 'I knew she was dying in the afternoon, and I just sat with her and sang and rubbed her hair and she knew I was there and that I loved her.'
Claire McVey was buried in the prom dress that she and her mother had picked out in Florida, the one she wore to London for the photographs. At her memorial service, her teacher said, 'You always heard Claire before you saw her - there was a giggle or a squeal.'
The regulations for dealing with a vCJD body are almost as brutal and incomprehensible as the disease itself. Annie McVey starts trembling when she explains that undertakers are told parents can have superficial contact, but instructions for the biopsy and post-mortem say that the dead must be sealed. Annie was told that Claire had to be zipped inside a double body bag, but then the hospice came up with the idea of making her a sealed glass coffin. 'Up to the moment of death, I was doing the most intimate procedures with her. She spat in my face two or three times, she weed on my hand, she dribbled when she went to kiss me. And suddenly she's dead and I mustn't touch her.'
Annie has asked questions about this through her MP; she is also agitated about the state of surgical instruments which, she says, cannot be said to be sterile if there is a chance they have come into contact with someone incubating vCJD. These are not trivial concerns, but when Claire was alive Annie hid from her pain in practicalities, and now she is gone her mind - anguished, restless - is still seeking a diversion.
In his epic poem of loss, In Memoriam, Tennyson wrote, 'For tho' my lips may breathe adieu, I cannot think the thing farewell.'
That paralysingly sad evening in Kentisbury Ford, I realised that the woman talking to me perfectly rationally had not begun to think the thing farewell; neither was she wholly among the living.
'It's the realising I can't touch her and I can feel her hand and I want it. The urge to have her physically present is so devastating. The last couple of months it's got worse because it's hitting in. It's for ever. This will sound mad, but I think at 15 she's too young to be wherever she is without me.'
The night has drawn in, leaving us talking in a silvery gloom. Annie invites me to stay for supper and disappears upstairs. When she doesn't join us, Wayne explains that since Claire's death, Annie has stopped eating.
What, no food at all?
'I make her Horlicks every night and I put 17 spoonfuls in the mug, till the spoon stands up in it, and that's all she'll take.'
When Annie finally joins us, I ask, Why won't you eat?
'I don't know. Penance maybe.'
Penance is for when you've done something wrong.
She shrugs. 'It's not rational, is it? But my child predeceased me. When she was growing up, I wanted her to have all the experiences I'd never had - not spoiling, but letting her see and learn things. And now she's had the biggest experience of all before me. I feel incredibly proud of the way she did it. I really do. She died with such dignity. But I'm meant to show her how to do it. Not her show me.'
Did Claire McVey die because she ate a sausage roll at a birthday party in 1989, when she was five years old? The people most likely to attempt an answer are to be found in a single-storey brick building round the back of the Western General Hospital in Edinburgh. There is something very British - a sort of Ealing Tragedy - about the CJD Surveillance Unit, a crummy warren of rooms full of brainy souls who, in another era, would have been cracking Enigma in a convivial hut.
'Forgive the mess,' says Bob Will, the head of the unit, steering me past a prehistoric filing cabinet into his office. Bob - the amiable fiftysomething neurologist Dr Robert Will - has been here since the Unit was set up in May 1990, coincidentally the same month that John Gummer, then Minister of Agriculture, fed a beefburger to his four-year-old daughter at a fete to reassure the public that British beef was safe to eat. 'Did he really do that then?' marvels Dr Will.
There are still some scientists who, while acknowledging the evidence points strongly to a link between BSE and CJD, maintain this link has not been proved.
How certain is Bob Will of the link between the disease in cows and humans?
'I am very confident the BSE agent is the cause of variant CJD and most scientists agree. Variant CJD occurs almost solely in the UK, and what happened here that didn't elsewhere? BSE. They have done transmission studies in mice - where they inoculate the brain tissue - and the protein deposited in the brain in vCJD looks remarkably similar to that deposited in BSE.'
In layman's language, the unit is no longer pursuing any other suspects in connection with its inquiries: they know who the killer is, all they need to discover is the method of breaking and entering.
Dr Will is sure the disease got into humans through infected meat in the Eighties. There have been other theories - contact-lens fluid (not one of the victims turned out to have worn lenses), childhood vaccinations (the dates don't add up and, anyway, our vaccines were widely exported to the EU, so why aren't there more cases over there?) - but diet is the only common factor among the vCJD patients and may even account for why the dead are getting younger and younger. Of the total 83 known cases of vCJD (the remaining eight are either still alive or are awaiting post-mortem results), 57 have been under 30. Was it easier for the infection to cross into children?
'That's clearly a critical question,' acknowledges Dr Will. 'It may be that age influences how the gut absorbs protein. My belief is that the most risky food was brain or spinal-cord tissue from cattle because they carry huge amounts of infectivity compared with any other tissue.' The main culprit, he says, was MRM or mechanically recovered meat, a hellish paste of bones and other garbage that goes into the optimistically named meat products. 'Is it possible that the age distribution of variant CJD in some way correlates to the usage of mechanically recovered meat in certain foodstuffs consumed by the young?' Bob Will chooses his long and exquisitely unexcitable words with care. He caused a fuss in the papers recently for mentioning school dinners and baby food as possible sources of infection, although for anyone up to speed with the subject, that was common sense rather than scaremongering.
What about Claire McVey at that hypothetical birthday party, eating that hypothetical sausage roll, I ask. Why her and not the other children?
'Let's say that there was one batch of sausages made from MRM. I think it may be wrong to assume that the infection was distributed evenly. It may be that one item of food was the critical item that had enough to initiate infection.'
So, just incredibly bad luck, then?
Bob Will gives an almost Gallic shrug of helplessness: 'The other much more difficult possibility is that there may be variation in susceptibility in people for genetic reasons. This is of great importance to the families because other siblings could be regarded as being at risk. It's certainly reassuring that at the moment we have not yet had any families with more than one member infected.'
Have we got off lightly?
'We just don't know. All we can say is there was a risk taken and that we still can't tell how many people are incubating the disease.'
The unit has mathematical models which show anything from a limited epidemic of, say, 100 or so cases to 100,000 or more. Experts have recently suggested that the upper bounds of such an epidemic look less likely to be very high. 'Personally, I think it's actually a very anxious period,' says Dr Will. 'For the first time, we believe the cases are occurring with a higher incidence. The previous highest total of deaths per annum was 18 in 1998. In the first six months of this year, we have already had 14 deaths.'
I think of one among that 14: Claire McVey, now enrolled into the mute, biddable ranks of statistics. Bob Will seems to read my mind. 'I've seen people in the papers writing only 75 cases and it's incredibly distressing for the families. Their suffering - well, you've had a glimpse of it - it's almost unimaginable. This is a terrible disease. You don't want anyone to get it.'
Dr Will never stopped eating beef. Along with many colleagues, he took the view that if brain and spinal-cord tissue was removed from the food chain as per the guidelines laid down by the Southwood Report in February 1989, then there would be little risk to anyone after that. 'Families were possibly exposed in '84 or '85, before BSE was isolated; well, maybe there was nothing to be done about that. But the minute it was isolated and safety measures introduced, public health should have been guaranteed. Now we know that those measures were not fully implemented or enforced, which is a national tragedy, and I hope that tragedy will be addressed by the Phillips Inquiry [set up in 1997 to look into the previous government's response to BSE and vCJD].'
Dr Will offers me a tour of the laboratories. As we are getting up to go, I broach something that has been bothering me. Does he think the victims will get any younger?
'Well, we now have a 12-year-old.'
'That's what I said.' He looks almost ashamed.
Girl or boy?
'I can't say.'
But if the incubation period is at least 10 years, then the child was barely eating solid food when it contracted the infection. 'I'm not saying anything,' the neurologist says wearily. 'You've got small children of your own, Allison. You do the maths.'
Along the corridor, I am introduced to James Ironside, the erect, bone-dry Scot who first identified variant CJD when he was looking down a microscope in 1996. The name is familiar, anyway. Dr Ironside is the pathologist who examined tonsil and brain samples from Claire McVey and whose written evidence, submitted to her inquest in Barnstaple, enabled the coroner to record a verdict of death by misadventure. (Earlier vCJD victims were deemed to have died of natural causes, to the disgust of relatives.) 'Now, this is grey matter,' says Dr Ironside, inviting me to join him at a microscope. 'You see those flowery shapes? We call them florid plaques - that is an aggregate of prion protein which is a hallmark of variant CJD.'
The cross-section of brain looks like a lunar landscape, with the florid plaques forming the craters. Is that vCJD itself? 'No, I think of those as the fingerprints it leaves. We don't know why it forms them.'
Suffused by a pink dye, the section of brain looks enchanting, as if the moon were made of marshmallow. 'That's memory and personality, basically,' says Dr Ironside. The prion protein got into that person's spleen, probably incubated there for 10 years, then entered the central nervous system and travelled to the brain where it started to throw its weight around like a chimp at an embroidery circle. The pretty eruptions I have been admiring are the nerve cell endings - they have exploded, taking memory and personality with them.
Does Dr Ironside ever think about the patients? 'Never.' Why not? 'I have teenage children of my own. They ate beefburgers. I can't think about it, it would be too' - he searches for the technical term - 'distressing.'
The Phillips Inquiry is due to hand its report to ministers at the end of this month, but as yet no date has been set for publication. (The families' case for compensation will start four months later.) The inquiry has been remarkably leak-proof, although some of the evidence Lord Phillips has heard was described to me as, 'like Yes, Minister without the laughs'. The same Whitehall source says, 'If you were being darkly cynical, you could say the wait-and-see policy over BSE was a qualified success. The dead still under three figures - a bit of a narrow squeak, admittedly, but hardly the calamity it might have been.'
I call Annie McVey in Devon and ask her about her hopes for the report. 'I'm worried it will just be an opportunity for this lot in government to score points off the last lot. That's not what we want. What we need is an acknowledgment of mistakes and a debate about what duty of care - what honesty - is owed to us all by the state.' If the business of government is heartlessness, then the business of mothering - as Annie has shown - is its exact opposite.
She says she has bad days and worse days, 'days when I get up with my horns and tail on'. And she writes furious letters - to Jack Straw, to the papers - but she is training herself to tear them up. She doesn't want to be a Mad Cow Mother, only because she thinks she can best serve her child's memory by being as cool and cogent as the lawyer daughter she will never know.
These days, Annie rations her visits to Claire's room, keeping the door tightly closed: 'I'm so afraid of losing her smell.' But she did go in the other morning and at the bottom of the wardrobe she found the shoes. 'They were so new, hardly shaped to Claire's feet at all. She didn't wear them again after that morning when she told me she felt afraid coming down the stairs. They're ridiculously high and I thought, how on earth are you going to walk in those, my girl?'