IT WAS called the worst treatment disaster in the history of the NHS, which saw an estimated 7,500 patients infected with hepatitis C and HIV.
More than 2,000 NHS patients, many of them haemophiliacs, died after they were inadvertently given contaminated blood products during routine hospital operations.
Decades later and After years of campaigning by the families of those who were contaminated or died, in 2007, a new report has been published following a public inquiry into what went wrong and who was responsible.
For Newport couple Colin and Janet Smith, whose lives were devastated after their seven-year-old son Colin died after being infected with Aids and hepatitis C, the Penrose inquiry was the culmination of decades of campaigning. But the pair are not satisfied.
The £11 million Penrose inquiry was led by Scottish judge Lord Penrose and took six years to complete, only just publishing its findings in an 1,800 page report last month.
The inquiry aimed to tackle two major questions; whether the authorities did enough to protect people from being infected during the 1970s and 1980s and secondly, once the risks became known, was enough done to warn people?
On March 25 – the day the report was released – David Cameron also made a public apology to the victims and their families and promised £25 million to help compensate those affected.
But Mr and Mrs Smith said they are still fighting for justice and said more needs to be done. The couple, like so many other victims, have called the Penrose report a “whitewash."
The Smiths have been unfaltering in their campaign for justice ever since the scandal first broke. Their son Colin, who had haemophilia, was infected with contaminated blood during an operation for grommets when he was less than two-years-old. He died in 1990, aged seven, from Aids.
Mrs Smith said: “Yes we have had an apology, 30 seconds of an apology. But we want justice.
“I think the government were hoping that people would all die and it could be swept under the carpet. But people have family and these families will keep on. We have got to get justice.
“When Penrose came out there were tears. People I know made trips to Scotland hoping for this big report, they lit candles, but all it made was one recommendation. People walked out, that’s how upset and disgusted they were.”
The Newport couple were disappointed with the Penrose report which only made one recommendation – to ensure everyone who underwent blood transfusions prior to 1991, when blood screening became commonplace, is tested.
The Smiths and the thousands of others affected have said they want recognition of their suffering, accountability from those in charge and compensation payments.
“I don’t think people really understand why we are still fighting. People say why do you carry on, why do you still fight. I say we have to because people are still dying.
“Colin, and many others, shouldn’t be lying in the cemetery, we should probably have a couple of grandchildren by now. He should never have been given HIV.”
As well as the tragedy itself, many victims believe there was an attempt to cover up the scandal, with some patients reporting they received letters informing them their blood was contaminated up to seven years after treatment – by which time their chance for compensation was gone.
Mr and Mrs Smith themselves said they knew son Colin had been contaminated with Aids but only found out he was infected with hepatitis C three years after his death when they received a letter. The couple said the doctors were then unable to say whether Colin had died of hepatitis C or Aids.
Part of the problem, however, is deciding where the blame lies. Previous to Penrose was the Archer report, when Lord Archer led a privately-funded inquiry into the scandal in 2009, and to which Mr and Mrs Smith gave evidence.
Lord Archer said in his report that apportioning blame was difficult, suggesting US suppliers of contaminated blood products – who paid prisoners for blood and sent the blood abroad, including to the UK – were largely at fault.
But Lord Archer also called the slow response of the government at the time and the failure of successive governments to investigate the tragedy “shameful.”
Mrs Smith agrees it is difficult to know who to blame, but she said she still wants accountability.
“We blame the government, the NHS, the health minister at the time,” she said. “I blame the people who were making the decisions.
“I can’t believe any politicians can sleep soundly in bed at night. It’s only the last generation of politicians who are coming down on the side of the victims.”
Mr Smith added: “I would like one of them to go to my son’s grave and tell him why he died. When he was dying he asked me and I didn’t have an answer.”
But accountability – especially prosecutions – are out of the question, after Lord Penrose said no individuals or institutions would be held criminally liable as a result of the inquiry.
And the NHS claims it always sought to protect patients in line with the contemporary understanding, as during the 1980s knowledge of HIV and hepatitis C was still emerging.
Many victims, including Mr and Mrs Smith, claim there were attempts to cover up the scandal after many medical notes have been destroyed.
Mrs Smith said: “There are two issues for us, that it happened at all and that it was covered up.
“It’s like the Hillsborough disaster, it was down to all those people who were fighting constantly to get justice and that is what we are doing now.”
But the Smiths say they do feel closer to getting justice following the Penrose report and the pledge by David Cameron for compensation.
Unbelievably, Penrose was the first publicly-funded inquiry into what happened. Even though it was funded by the Scottish Government, and was unable to look at the disaster in England in Wales, both David Cameron and Ed Miliband have promised to keep the £25 million funding pledge if they win the election.
“I hope to God they come through with it,” Mrs Smith said. “They have got to sort this out once and for all. I am hopeful this will be put to rest after the election.”
Mr Smith said: “David Cameron, credit to the man, he did apologise. Cameron said whoever gets elected they will prioritise this money but let’s wait and see because we have lost faith.
“It’s been washed under the carpet so many times for us. We are not naive enough to think people are going to go to prison.
“But we want them to put it right. It’s crass to talk about money but it does make a difference.”
It is yet unknown where the £25 million is set to go to – whether to be divided among the victims’ families or as a donation to one of the main charities for haemophilia, HIV and hepatitis C.
Mr Smith said: “It’s not easy losing a child but to lose one unnecessarily is awful.
“I feel closer to getting justice now than I have for generations. Although it was a very small apology, I hope it was sincere. I hope Cameron will stick to the promise and put this to bed.”
For the Smiths, the wait until the General Election on May 7 means more than just seeing who will lead the country for the next five years. It is a chance for the Newport couple, whose own lives and those of their children’s have been shattered by tragedy, to see action finally taken to atone for the terrible disaster.
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