Tainted blood: ‘the worst tragedy in NHS history’
For the families and victims of the tainted blood scandal, it has been a 30-year battle for justice. Yesterday, an independent inquiry examining how thousands of men, women and children became infected by contaminated blood products in the Seventies and Eighties, in what has been described as the worst ever NHS treatment disaster, finally began its hearings.
For many, it is too late – around 3,000 of 7,500 patients known to have been infected by HIV and hepatitis have died. Nearly 100 victims are thought to have lost their lives since the announcement of an inquiry, in July last year.
Others told the inquiry yesterday that they do not know if they will live to see justice.
Alan Burgess, 60, who is infected with both HIV and Hepatitis C, said: “It can’t come quickly enough. We’ve been waiting for so long and so many people have already died while we were waiting – I lost a friend just a couple of weeks ago.
“For me, I don’t know how long I’ve got. I take a cocktail of drugs every day to stay alive. I just hope I am still here to see justice done.”
Michelle Tolley, now 53, was infected following a blood transfusion after the birth of her child in 1987 and another in 1991 – she eventually found out in 2015 that she had Hepatitis C.
Yesterday she said: “This is the worst tragedy in the history of the NHS and it must never, ever happen again, absolutely never.”
Sir Brian Langstaff, the retired High Court Judge chairing the inquiry, suggested criminal trials could follow as he pledged to act “without fear or favour” in holding those responsible to account.
Former health secretaries will be among those compelled to answer questions in public about their involvement in the scandal, which Sir Brian revealed may have actually infected more than 25,000 people.
But first, it was time to remember the victims. Just before the hearings began, survivors and their families were invited to lay messages in front of the stage.
As a choir sang The Sound of Silence by Paul Simon, the infected and
‘It has taken away their dreams, their hopes, their dignity… their sanity, even their homes and marriages’
affected slowly lined up to each place an individual plastic vial – echoing those used to contain blood – in an illuminated display stand at the front of the stage. Each contained a private, personal message or tribute.
These will stay in the venue’s chapel during this week’s hearings, which will hear opening statements from the NHS and the Department of Health and Social Care.
Bereaved relatives and sufferers of the contaminated blood scandal were moved to tears as they watched images of hundreds of people who died in the scandal, set to the Emeli Sandé song Read All About It with its lyrics about “finally finding our voices”.
In a second film, victims starkly described how the contamination with Hepatitis C and HIV had destroyed their lives.
Many told how they had been unable to work, their relationships had failed, they had been stopped from
having children or forced into abortions and how they felt forced to hide their illness because of the stigma surrounding the illnesses.
“For many hundreds of innocent people it has taken away their dreams, their hopes, their dignity… their sanity, their potential, and even their homes and marriages,” actress Isla Blair told the commemoration service, in a speech shared with actor David Robb, who played Dr Clarkson in Downton Abbey.
He told how many of those affected were haemophiliacs, many of whom were still schoolboys, who were treated with the clotting agent Factor VIII. He said: “Factor VIII seemed like a miracle – stopping bleeds quickly and even preventing them. This wonder drug let boys be boys, play football, climb trees, mess around, fight and do all the stuff teenagers do.
“It wasn’t only teenage boys, boys much younger were also treated with Factor VIII. It was made by the pooling together of plasma from thousands of blood donations. If one donor had an infection, the entire batch would be contaminated. The blood was taken from those who were paid to donate, which included prisoners, drug addicts and those on the edges of society.”
Victims yesterday told how they had been living “half lives” under the shadows of their illnesses.
One man said he was given Factor VIII blood products as an eight-yearold child for a swollen knee, and was misdiagnosed with haemophilia.
It was not until he was 43 years old that he found out he had been infected with Hepatitis C. He said: “When they told me what they had done to me, I stood at a motorway bridge to jump off it – basically, that has been my life ever since.
“I lost everything. I lost my whole life the day I found out – everything ended.”
Others spoke of how they received the diagnosis of HIV through the post.
Sir Brian said he appreciated the inquiry needed to find answers quickly, adding: “The longer the inquiry takes, the more will not have lived to see its conclusions.”
He told victims the process would be “as fast as reasonable thoroughness will permit” but admitted it would be a “mammoth task”.
The inquiry – ordered last year by Theresa May, the Prime Minister – will be the largest of its kind, with more than 1,270 infected victims and their family members taking part and more than 100,000 documents already submitted.
Until now estimates have suggested that around 7,500 patients had been infected by HIV and hepatitis, causing around 3,000 deaths.
But in his opening statement, Sir Brian revealed that many more may be living in ignorance, never having been told that they have Hepatitis C.
“There may yet be thousands more who do not feel well, but have not yet been told that the reason for this is that their life is threatened by Hepatitis C.
“Estimates from some sources go far beyond 25,000… there is a real chance those estimates may prove right.”
The chairman also suggested the inquiry could be followed by legal action, telling victims and bereaved family members who gathered at the hearing: “[This] is not a trial, whatever it may lead to later.”
Previous inquiries have lacked powers to force witnesses to testify, meaning questions about whether the scandal was covered up have never been answered.
The independent Infected Blood Inquiry will investigate how thousands of men, women and children died after being infected with HIV and contaminated blood products in the Seventies and Eighties.
They include more than 5,000 people with the clotting disorder haemophilia, given clotting agents which used human blood plasma from the US, from paid donors including drug addicts, sex workers and prisoners.
The inquiry will consider “whether there have been attempts to conceal details of what happened” through the destruction of documents or withholding of information.
It will also consider if those attempts were deliberate and if “there has been a lack of openness or candour” in the response of the Government, NHS bodies and other officials to those affected.
The full inquiry will start next April and is expected to last a minimum of 15 months.
With reporting by Rosie Taylor