Guilt and anger surface as infected blood inquiry hears evidence

<span>Photograph: graeme robertson/The Guardian</span>
Photograph: graeme robertson/The Guardian

The guilt of infected blood donors and the anger of victims whose diagnosis of HIV and hepatitis C was withheld from them for years has emerged as evidence given in secret was read out to a public hearing in London.

On Monday, witnesses who did not want to appear in person had their testimony delivered by intermediaries who interviewed them for the infected blood inquiry. It is examining how as many as 30,000 people became severely ill after being given contaminated blood products by the NHS in the 1970s and 80s; many have since died.

Opening a fresh session of the inquiry, its chair, the former high court judge Sir Brian Langstaff, said 189 witnesses had so far appeared but some patients were reluctant to talk openly about conditions that are “life-shortening and life-threatening”.

Three expert intermediaries – Pam Allen, a social worker, Kay Durrant, a former detective and family liaison officer, and Jackie Wilson, a social worker who specialised in family court cases – interviewed about 85 individuals across the UK.

The infected blood inquiry will investigate how thousands of people with the blood-clotting disorder haemophilia were given blood products by the NHS which were contaminated with the HIV virus and hepatitis C.

At least 4,689 British haemophiliacs are thought to have been treated with infected blood in the 1970s and 80s. So far, half have died.

The inquiry will try to figure out the exact number of people who have been infected, examine the impact the infection had on people’s lives, investigate whether there was any attempts to conceal details of what happened, and identify any individual responsibilities as well as systemic failures. 

Some had been infected through NHS surgery, others through childbirth, treatment for haemophilia or contact with a partner. “It was the first time these people were telling their story,” Wilson explained.

“They wanted to stay away from the legal framework to ensure they [preserved] their confidentiality [because of the] stigma [if their infections were revealed] ... We were really struck by the dignity people showed and their strength in managing situations.”

Their thematic evidence highlighted problems infected individuals face. A significant issue was for those who had been blood donors and may have unknowingly passed on an infection.

One man had his life saved following a road traffic accident when he was a teenager. “He was so grateful that he went on to be a blood donor,” Durrant said. “Fifteen years later he was waiting to donate blood and the service contacted him to say that was not possible. He had to wait for a couple of weeks to be told he had hepatitis C.

“He still feels guilty that other people throughout that 15-year period could have been infected [by him]. He was thinking he was doing a good thing. Today he lives with tremendous guilt and that continues to impact on his relationships.”

Allen said she met a woman who had been given a blood transfer when she was was 14 but did not discover until she was in her 30s she was infected. When a blood transfusion van came to her factory she could no longer, unlike her workmates, donate and was called names for being scared – but could not tell her colleagues why she had stopped. “She had given blood for years but felt guilty about how many people she may have infected,” Allen said.

Another woman given a contaminated transfusion during an ectopic pregnancy had later been encouraged to donate because she had a rare blood group. “She has lived with the guilt that she may have infected other people,” the inquiry heard.

Withholding diagnosis of hepatitis C from patients caused resentment. One woman had been identified as carrier but the GP decided not to tell her for 13 years because she had also been suffering from depression. “She felt very strongly that this was a decision that had been taken away from her,” Durrant said. “Her daughter said it was ‘disgusting’ that they didn’t tell her because it put health professionals at risk.”

Other patients told the intermediaries they were informed about their conditions insensitively. One teenager was called out of college to see a consultant. He was HIV positive and that he had probably had only two years to live, must not engage in sex or exchange bodily fluids with anyone. Allen said: “The consultant said ‘Tears don’t count’, you can’t pass on infection through tears.”

Related: Haemophiliac boy's mother was labelled 'neurotic', blood inquiry hears

Some victims received the news they had the virus through letters sent through the post and had to tell their young children who were already being treated for haemophilia. “One family had to share the information with son and the response was, ‘Am I going to die?’ This was extremely traumatic for families.”

Often patients who complained about extreme fatigue were dismissed as malingerers by doctors before they were eventually diagnosed as suffering from hepatitis C. “There was a default mechanism to explain it away,” Wilson said. Where it was eventually diagnosed “there was a reluctance to acknowledge that it may have come from infected blood transfusions”.

Sometimes patients were told they must have contracted an infection through intravenous drug use or sex with prostitutes. “One guy who had been in the army during the war was asked if he had been a drug user,” Wilson recalled. “He felt it was a real slur … A lot of people were asked if they had used drugs or had contact with sex workers, which was terribly demeaning for them.”

A small number of patients were informed by letter they may have received blood from vCJD sufferers and asked if they wanted a test. “For some this was the last straw given all the other problems they had,” Wilson said.

Some confided in the intermediaries that they had chosen never to have relationships or children for fear of infecting a partner. “We met some people who would have made wonderful parents and they felt they had that chance taken away from them. One man said it was hard to go on a date … At least two men remained celibate throughout their 20s.”

One person recalled seeing a local sign that read ‘No homosexuals, no haemophiliacs’. The inquiry was also told of another individual who felt his treatment at the dentist was so humiliating, because he deemed to be a high-risk patient carrying a transmissible virus, that he later extracted his own teeth.

The hearing continues.