A scandal drenched in blood
Published by The Mail on Sunday (7th May, 2017)
Ade Goodyear was the fourth boy in his family to be diagnosed with haemophilia. Unable to cope, his parents reluctantly gave him away. He spent long periods in hospital, and on rare occasions when he could attend school he found himself at the mercy of bullies.
The day they broke his arm is one he will never forget. A boy approached him in the playground and smashed an iron bar down on his left arm. ‘He wanted to see what happened when you hit a haemophiliac,’ says Goodyear.
The attack shattered his elbow and sent him back to hospital for several bouts of surgery and six months’ recovery, complicated by his rare and potentially fatal inherited disorder that means blood does not clot properly.
So the nine-year-old boy could not have been happier to be sent to Treloar College, a specialist boarding school for disabled children in a Hampshire stately home. ‘It was like something out of Harry Potter – and lots of other boys there had haemophilia,’ he says.
Treloar was at the cutting edge of care for children with haemophilia. A unique National Health Service centre was opened on the campus, ensuring that pupils received the latest medical treatments, while their studies continued with minimal disruption.
But now it has emerged that of the 89 boys with haemophilia who attended this pioneering school in the decade after 1975, only 17 are still alive.
The other 72 have died, many of them barely reaching adulthood – victims of one of the most devastating episodes in NHS history.
This astonishing revelation provoked new calls last night for an official inquiry into a scandal that shames Britain’s medical and political establishment: the deaths of more than 2,000 haemophiliacs from tainted blood products designed to improve their lives.
‘The number of deaths at this one school alone should have warranted a public inquiry, let alone the thousands of others who have died,’ says Joseph Peaty, a former pupil at Treloar and a leading member of the Tainted Blood campaign.
One person a month is still dying as a result of this disaster. Thousands more, such as Goodyear and Peaty, struggle on with hepatitis and HIV – their lives shattered after being infected by blood extracted from drug-addicted American prisoners and Russian corpses.
Families have been destroyed, partners inadvertently infected, and people left living in fear after the authorities were shamefully slow to respond to rising concerns over contaminated supplies when dangers emerged four decades ago.
I have spoken to many victims and families investigating this issue, spurred on by having a related blood disorder in my own childhood. Most are angered by distressing events that blight their lives and dismayed by indifference to Britain’s forgotten scandal.
This week some of their shocking stories will be highlighted in a special investigation on the BBC’s Panorama. And at the heart of the powerful exposé stands Treloar, a supposed sanctuary for sick and disabled children.
With its snooker room, swimming pool and archery field, the imposing manor house offered a chance for child haemophiliacs to enjoy a more normal life.
They began being sent there from about 1975 after the opening of the special haemophilia unit. This destabilising disorder leads to recurrent bleeding, usually into joints, so even a minor knock could then lead to two weeks out of the classroom to allow for recovery.
Haemophilia left Goodyear’s elder brothers illiterate as they missed so much time at school. And sufferers often ended up isolated since they could not join the rough-and-tumble of normal childhood activities. Goodyear’s previous headmaster once held him up before the entire school asking pupils not to hurt him – instantly making him a target for bullies.
No wonder he found Treloar to be ‘fantastic, like a different world’ upon arrival in September 1980. ‘Ten others began at the same time and being with other haemophiliacs made such a big difference,’ he says. ‘We were called the Golden Boys, which gives me goosebumps even now.’
Peaty had arrived the previous year from Coventry, aged 13. ‘It was scary at first because I had been so protected by my parents,’ he says. ‘But once I settled in, I found it incredibly liberating and it really benefited my education.’
The boys were taught to manage their condition, with medical support and sympathetic staff on hand, and many rapidly improved academically since they missed fewer classes. Prince Charles and Princess Diana were among Royals and celebrities who often visited.
Inevitably this pioneering college was at the forefront of new ‘miracle treatments’ coming in for haemophiliacs, such as clotting factors, made from donated blood, that could be injected to quickly stop potentially fatal bleeds.
‘You weren’t worried about getting on your bike or your skateboard or going with friends to the park, knowing you could have your jab,’ says Goodyear.
But in 1982, boys began to develop mysterious afflictions. Peaty had flu-like symptoms and exhaustion that he could not shake off. Goodyear turned yellow and kept catching bugs. A teenage friend began wasting away, then died suddenly.
Little did they know the life-enhancing blood products being injected into their bodies were contaminated with deadly diseases, nor that their dedicated doctors were desperately trying to source the new and safer heat-treated products coming on to the market.
Stories began appearing about haemophiliacs in the United States dying from AIDS, a disease then cloaked in fear amid gross headlines about a ‘gay plague’. Treloar pupils voiced concerns to staff, but were told not to worry.
When Goodyear went home to Portsmouth in the school holidays, he was abused in the street and parents told children to avoid him, such was the stigma. ‘I was so sad. I wanted to see my friends but they all vanished. Even my parents did not know if they could touch me.’
Then their worst fears were confirmed. Goodyear was called into a room with four fellow pupils in 1985, and three of them were told they had HIV. ‘They said we had two or three years to live,’ he recalls. ‘I remember looking through the blinds and wondering how many more sunrises I would see.’
Peaty learned of his HIV infection during a hospital visit, when a doctor reading his notes inadvertently revealed the devastating news. ‘I was crushed,’ he admits. ‘A dark cloud descended. I could not see the point of going to university or having a career when I would soon be dead.’
Yet he was not told formally by his family doctor until the following year, despite having a girlfriend at the time. ‘It was very fortunate that she was not infected,’ he says. ‘Many of us had wives and girlfriends who also ended up with these diseases.’
Goodyear and Peaty were among thousands of British haemophiliacs given hepatitis and HIV. Yet even as these boys were told the bad news and others with the disorder began developing AIDS and dying, patients were still being given tainted blood products.
It has taken years for the full story to emerge, but it is now clear that England and Wales especially were lethally slow to react as evidence emerged of deadly viruses in the donor pool. Sixteen other Western countries acted faster to screen for hepatitis C, known as the ‘silent killer’.
The country’s leading haemophilia specialist reassured patients, despite being told American haemophiliacs given the same products had developed AIDS. Another expert’s desperate plea to stop using imported blood products was rejected by officials.
British haemophiliacs were being diagnosed with AIDS by the end of 1983. Yet the then Health Minister Kenneth Clarke infamously insisted ‘there is no conclusive evidence that AIDS is transmitted by blood products’ in November that year.
Haemophiliacs were hit hard because each dose of coagulant was created from pooled donations of blood from thousands of people – and, according to previous revelations, it was being harvested from some of the highest-risk donors on Earth.
It is illegal to pay blood donors in Britain on safety grounds, yet clotting factors using blood taken from people abroad were being imported. These included blood from prison inmates in Arkansas paid to donate twice a week.
One Canadian company was found to have repackaged blood removed from Russian corpses as coming from Scandinavian donors, while also relabelling out-of-date blood for sale in Europe and buying supplies from desperate Haitian slum-dwellers.
Among Goodyear’s first friends to die was a boy who only ever had three injections of clotting factors. Then in the early 1990s, after leaving school and before the arrival of effective AIDS treatment, they began to drop with frightening regularity.
‘One year we lost seven people over Christmas. Another time I saw a friend and he looked fine, then three months later he was so ravaged by disease that he looked awful. We cried and cried after seeing him, but I saw so many friends emaciated and killed by AIDS.’
Peaty eventually stopped asking about friends. ‘Every time I spoke to people from the school it was bad news. It felt as if we were being picked off one by one, and I was left wondering where I was standing in the firing line.’
Sure enough, by 1996, Peaty, then aged 30, was sliding towards the grave. ‘I was so emaciated and gaunt,’ he recalls. ‘I was in an electric wheelchair, and I had carers to feed me and turn me in bed.’
He was saved by a new wave of antiretroviral drugs that enable patients to manage their chronic condition.
Peaty remains in a wheelchair and is angered by the legacy of depression, the destruction of his career and his inability to have a family. ‘This has permeated every corner of my existence and taken away everything that gives life meaning, from children to simple holidays,’ he says.
Goodyear worked in the music business, hiding his illness while touring as an engineer with bands including Bucks Fizz and The Human League. His ambition was to go on a world tour, but he had to reject an offer from Peter Gabriel since he knew he could not get insurance.
He last worked in 1996, abandoning his career to care for his dying elder brother, even as his own health deteriorated. ‘I am well enough now but I feel such guilt because so many of my friends have died,’ he says.
In Canada, France, Japan and the US, where thousands more haemophiliacs have died, there were prosecutions of companies, ministers and officials for negligence. But in Britain there were no prosecutions, nor even a national inquiry with full statutory powers. Instead, key records have been destroyed – allegedly in error – and victims have had to fight for paltry ex-gratia packages.
An independent, privately funded inquiry condemned the failings in 2009. But it took another six years before the then Prime Minister David Cameron apologised to the victims, offering slightly bigger payments to those still suffering.
Last month, former Health Secretary Andy Burnham used his final Commons speech before being elected as Manchester Mayor to demand an inquiry into ‘criminal cover-up on an industrial scale’. He said the scandal had ‘disturbing echoes’ of the Hillsborough stadium disaster.
The Department of Health responded that it had published all relevant information still held on blood safety, while Ministers argue that a public inquiry would detract from the efforts to support victims and their families.
Yet the tragedy of Treloar stands as testimony to the terrible state failure that haunts survivors. Goodyear told me of an emotional meeting with a former nurse there shortly before she died. ‘She cried on my shoulder because she thought she had failed her Golden Boys,’ he says.
Treloar and its dedicated team were not to blame for the tragedy. Yet, even now, decades later, we still cannot answer Goodyear’s simple question: ‘How could 72 children go to one school and leave with a death sentence?’