Our NHS poisoned me and thousands more. So why won’t they give us the support we need?
- Credit: Archant
For 56 years, Steve Sillett has had to contend with more health problems than most would dare to even imagine.
He's hit rock bottom on several occasions, spent more time than he'd care to remember in hospital, been diagnosed with cancer, rushed away from parties after coughing up blood in front of horrified friends and had intense pressure placed on his marriage.
All because of a condition handed to him by the same people who are supposed to cure health problems, not make them so much worse – the NHS.
For Mr Sillett, of St Paul's Close, Brockdish, is one of thousands of people infected with the hepatitis C (hep C) virus after being given contaminated NHS blood products between 1970 and 1991.
During this period an estimated 32,000 people, scores of them from this region, were infected through tainted blood and blood products, many of which were commercially manufactured and sold, without safety checks, to the British government from the United States.
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These products came from numerous suspect and high-risk sources, including prisons, drug addicts and the homeless, but the government continued to import them even after being given warnings they carried a risk of infection.
More than 1,500 people were infected with HIV along with hep C and it is estimated the scandal has cost around 2,000 lives so far.
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In terms of death toll, it is the 15th largest peacetime disaster in British history.
Although more than 30,000 people are thought to have been given contaminated blood products, only an estimated 6,000 know it.
For the rest, health problems caused by hep C could strike at any moment. It's known as 'the silent killer' for a reason.
Yet, decades on from when the scandal first began, an EDP special report has learned how the government continues to let down sufferers and their families in many ways.
a reluctance to investigate properly how the scandal was allowed to happen and hold those responsible to account;
a lack of suitable financial support, leaving many victims and their families struggling to cope;
failure to provide an acceptable one-off payment;
not providing the best drugs possible for sufferers, despite promises to the contrary;
uncertainty over the financial futures of the funding schemes set up to help;
a complex and demeaning support system
Speaking from his Norfolk home, Mr Sillett said: 'The government put us in this situation so there shouldn't be any question about them trying to do all they can to give us the best support possible.
'Even when they knew they were getting blood that could be tainted they continued to give it to us. That decision cost so many of us so much.
'But to them we're just a little community. A tiny thorn in their side that they throw a few scraps to every now and then.'
The 56-year-old, who is married to Di, was born with haemophilia, an inherited condition which affects the blood's ability to clot and meant he had to inject blood products, known as Factor VIII, several times a week.
Health bosses, faced with increased demand for blood products but not enough supply, turned to overseas drug companies to fill the gap.
What is now known is that not only did those products come from many high-risk groups, they were given to British patients by the NHS without being screened for possible infection.
By the time Mr Sillett, who worked as a lorry driver, learned of his own virus, he had been injecting potentially-contaminated products for 16 years.
Many of the victims of the scandal had haemophilia, though some contracted diseases from blood transfusions. Hep C causes the liver cells to lose function and can often lead to cirrhosis, advanced liver disease or cancer.
At diagnosis Mr Sillett was warned his liver was already significantly damaged, although it was several years before the problems caused by hep C became much worse than those by the haemophilia.
He explained: 'At first I started to get stomach aches and tiredness.
'On one occasion I suddenly fell ill at a friend's party and began coughing up blood everywhere. I ended up in the Norfolk and Norwich. That happened several times.'
In November last year came the news that cancer had developed. Doctors said he had 12 months to live unless a donor could be found, which could take a year.
His wife said: 'We seemed to get over one hurdle and then we'd be faced with something else. It was so hard for me to watch him suffer and know that I couldn't help him.'
When all seemed lost, hope emerged. Within a few weeks a donor was found and January's operation to transplant his liver was a success.
And the new liver also means he is clear of haemophilia.
It will be a few months before they know whether the cancer has cleared completely – and the strain of what he's undergone could yet cut his life short.
He said: 'To be told after 56 years I haven't got haemophilia any more, I can't quite believe it. I've found it hard to come to terms with.'
Despite some good news at long last, the family's bitterness at the treatment they have received remains raw, as Mr Sillett explained: 'I feel angry, even now. Angry that someone had taken the decision that haemophiliacs weren't worth decent blood.
'They'd taken it from junkies, prostitutes and even corpses – even when they knew it was contaminated. Someone took that decision, so someone is to blame. But no one has ever been made accountable.'
Despite years of campaigning, a full public inquiry into the scandal has never been held in this country. A six-year inquiry into several hundred Scottish cases cost an estimated £12m, came up with one recommendation and led to devastated campaigners burning the Penrose Report in front of the gathered media.
It was only in March this year that David Cameron became the first prime minister to apologise for what happened. Too little, too late say Mr Sillett, his family and the many other people in Norfolk, Suffolk and Cambridgeshire impacted by the scandal.
Tomorrow – failed by our government.
HOW DID THIS HAPPEN?
'Blood was very big business, it was a commodity, like oil.'
These are the words of Michael Colyer, 64, from Barford, who contracted hep C after being given blood products to treat haemophilia.
During the 1970s and 80s advances in medical technology increased the need for blood and blood product donations and companies in the United States in particular quickly found a way to make money from the shortage.
But there was no regulation in place to monitor safe ways to extract blood.
Clinics were set up across the US and people were even paid to donate.
One Canadian company took blood from Russian corpses, while inmates at prisons were even paid to donate once or twice a week, again with no checks on whether they were carrying a disease.
The NHS, struggling to cope with the demand, continued to buy the products into the 80s and up to 1991, despite the fact evidence suggests they were aware of the dangers some 15 years earlier.
At a 1997 independent inquiry into the scandal, Lord Archer of Sandwell said: 'By the mid 1970s it was known in medical and Government circles that blood products carried a danger of infection ... but the products continued to be imported and used, often with tragic consequences.'
Earlier this year David Cameron became the first prime minister to issue an apology to the victims of the contaminated blood scandal, stating that 'to each and every one of those people I would like to say sorry on
behalf of the government for something that should not have happened'.
He also pledged an extra £25m for the next 12 months to be spent on setting up a better payment and support system for those affected – however campaigners are still waiting for that pledge to be realised.
While the government has no plans to launch a formal inquiry in this country, on conclusion of the Penrose Inquiry, held on behalf of Scottish victims, it pledged to study its findings closely and act accordingly.
Meanwhile, in a January select committee date the House of Commons supported a motion to 'further review the circumstances surrounding the passing of infection via blood products to those with haemophilia and others during the 1970s and
That same month an All-Party Parliamentary Group Inquiry made a series of recommendations designed to make the financial support system fairer.