People who contracted serious diseases after being given contaminated blood were kept in the dark, ostracised and blamed, says a new report. And authorities’ failure to inform victims of their infections put untold numbers of others at risk.
Thousands of people developed hepatitis C, HIV and other diseases after being treated with tainted blood largely during the 1970s and 1980s. The report says victims want to know why the blood was used, who knew about the risks, and for those responsible to be held to account.
The trauma and stigma they still feel means many felt unable to give evidence in person to the ongoing Infected Blood Inquiry. Instead, a group of intermediaries visited 85 people to interview them.
Their report details the horrific way that victims have been treated. Interviewers heard repeatedly that those infected had been made to feel like “lepers” by health professionals and others.
Several “described themselves or their loved ones being asked about their lifestyle” with the implication that they were to blame for the infection.
People were given news of life-changing illnesses that could potentially severely cut short their lives in hospital corridors, during routine appointments and by letter. Sometimes the information was “brutally delivered” with what the report calls “insensitive language”.
One woman was told, “You could be dead by the time your child is 12.” A consultant told another victim that he was imagining his symptoms of hepatitis C. The consultant wrote in the victim’s medical notes that he was “a miserable man who was always complaining”.
The report found “many examples of people being denied treatment or isolated from other patients”.
One man spent his last weeks in a psychiatric ward due to the “perceived need to nurse him in isolation”. His wife had to travel on two buses to visit him.
The report said his family weren’t informed that he was nearing the end of his life. “On the day he died his wife took her usual lengthy bus route, with flowers to celebrate their wedding anniversary,” it said.
“It was only when she got to the ward and saw the empty bed that she was told he had died.”
Victims suffered debilitating physical problems, as well as psychological and emotional trauma.
Some hid their conditions from their closest family for decades due to stigma, or because they feared burdening them. Others felt unable to form any sexual relationships or have children for fear of infecting others, while other relationships broke down.
One victim said, “This put my life on hold. It was like marking time.” Another wrote, “This virus has destroyed my plans for the future and I have lost the ability to dream.”
Many people weren’t told they were infected until years after being diagnosed. They could have gone on to infect others, with several even giving blood “for many years”.
Victims are furious that the government failed to take steps to limit the damage.
One victim, now dead, left a written testimony about her experiences. “I feel that my country knew where they were sourcing this blood from and when they had the opportunity to correct this terrible disaster by completing a recall programme they failed to carry it through,” she said.
She said had this taken place when it was first suggested, in 1985, her condition would not have deteriorated to the extent it did.
British governments imported blood cheaply from the US throughout the 1970s and 1980s. They were repeatedly warned it was unsafe. But disgracefully the victims were made to feel at fault.
The report described “an enduring sense of being blamed and feeling shame about the infection”. Some victims were “ostracised” or abused in the street. One moved house.
The report said some victims feel there has been a cover up over the scandal. “Some were told that records of deceased relatives had been destroyed but persevered and successfully retrieved them,” it said.
One woman told interviewers, “I feel like I have been fobbed off. Why did they make me sign things? I believe it was to stop me taking things further and to protect the government.”
And the report heard of one man who died of an HIV-related illness, but whose cause of death was recorded as something else. “His brother recalls there being some discussion that the doctor had ‘done them a favour’ as there was such a stigma,” it said.
Victims of the contaminated blood scandal have been treated with contempt by the authorities. And today, Tory cuts mean victims and survivors live in fear of losing the little support they have.
“All expressed anxiety that this support might be reduced as part of austerity measures,” the report said.