The first day of the long-awaited infected blood inquiry has heard from several victims about the devastating impact it had on their lives. Here is what three of them had to say:
Derek Martindale
Derek Martindale was 23 when he was diagnosed with HIV in 1985 and given a year to live. He said he was advised not to tell anyone, even his family, because of the stigma surrounding the illness at that time.
“When you’re young, you’re invincible; when you’re 23, you’re generally fit – but then you’re told you have 12 months to live. It’s very hard to comprehend,” he said.
“There was no future; the likelihood of getting married and having children was very unlikely.”
Martindale told the inquiry that his brother Richard, who also had severe haemophilia, contracted the virus and died aged 23 in 1990. In an emotional evidence session, he said his greatest regret was not being able to support his brother in the months before he died. Sitting next to his adult son, Martindale said his brother had been “full of life” before contracting HIV.
“He got a job as a painter and decorator so he spent half his days standing on a ladder – his haemophilia doctor was not very pleased about that.”
Martindale said he had returned to Yorkshire for his sister’s wedding when his brother had wanted to speak about his illness. With his voice breaking, he added: “He was very ill at the time; he was wasting away in a sense. He knew he was dying, he knew he had Aids and that he didn’t have long to live and he just wanted to talk about that, talk about his fears, how scared he was.
“But I couldn’t; it was too close to home for me and I wasn’t there for him. I wasn’t there for him and three months later he died. It was the biggest regret of my life because he has gone and I cannot do anything to make amends for that.”
Martindale said he had felt relationships were not an option for him because he was expecting to die and sex was the main way his infection was spread. He told the inquiry a long-term girlfriend he told about his infection had left him because she “couldn’t stand to watch me die”.
But he said when he told his future wife he had HIV and hepatitis C she had said: “Is that it?” Martindale added: “That was a wonderful response.”
He told the inquiry they had agreed not to tell their son until he was an adult.
Martindale said he became aware he was also infected with hepatitis C in 1997. He said there was “still a stigma” associated with HIV and hepatitis C, adding: “I think society needs to move on from that and I hope this helps.”
At the end of Martindale’s evidence, people in the room stood and clapped.
Perry Evans
Perry Evans was born with haemophilia and from the 1970s he was given factor VIII. No one ever told him about the risks. He turned 18 in 1979 and was given a variety of blood products. A letter from a consultant to his GP was read out to the inquiry, saying there was concern that a number of patients in the US who had caught Aids from “pooled factor products”.
He first tested HIV positive in July 1984 but was not informed until August the following year. “I thought it was a routine appointment. They started talking about HIV and haemophiliacs being at risk. Then they informed me that unfortunately I was HIV positive,” he said.
“I recollect that my life expectancy was two to three years.”
His first reaction was disbelief, feeling numb and failing to grasp what he was being told: “I’m pretty sure sexual transmission wasn’t discussed. They may have thought I was a Christian and would not be practising sex outside marriage.
“I was left to my own devices, that I would go home and I would suffer and die a horrible and painful death. The outlook was bleak and terminal.” Evans tested positive for hepatitis C in 1986, but was not told about that infection until four years later.
He told the inquiry that his multiple infections “made me think that having a relationship would be out of the question – certainly becoming a father. When that news come through, all your dreams are gone.”
His mother felt great sadness. “In the haemophiliac community, mums feel it a lot harder because they feel guilty for passing down that gene [which causes haemophilia],” he said.
Evans started having relationships with women. He did not share the details with them on the first few dates: “I like to think I’m fairly open and upfront. I could not live without sharing with someone I wanted to be intimate with.”
In 1987, he met Heather at their local church: “On our second date we were taking the dog for a walk. I said I needed to tell her something. She later said I had said something like ‘I’m not going to die.’” The couple eventually married, despite doctors “grilling” her about the risks to which she was exposing herself.
The couple had two children, conceived after they went through the medical procedure of sperm-washing to ensure his children were born healthy. Evans took part in a groundbreaking BBC film with the actor Stephen Fry, that explained how families live with and overcome the effects of HIV.
Evans has had a variety of conditions since then, including hon-Hodgkin lymphoma. He was admitted to hospital in 2008 and slipped into a coma during which preparations were made for his funeral. He has since recovered and returned to work.
Carole Anne Hill
Carole Anne Hill found out in January 2017 that she had hepatitis C, having been infected by a blood transfusion she had in 1987.
She had menorrhagia at that time, suffering from heavy periods, and needed a blood transfusion urgently as she was becoming more and more anaemic.
Hill was contacted in November 2016 about getting a blood test looking out for markers of gynaecological problems, and one of the tests screened for hepatitis C – although she did not know that at the time.
Asked if she was told she was being tested for the condition, she told the inquiry: “No, not at any time.”
Hill said she found out about her diagnosis “by letter, which was half-opened and not sealed properly”.
She added: “I was cross about that.”
In her statement, she described the way the diagnosis was communicated as “entirely inappropriate”.
Hill said she wrote a letter about the way she was informed.
“It seemed to me that the patient should be informed in advance of that testing and warned accordingly, and would he kindly not tell people by letter in future?” she said.
Hill said people needed to be “fully informed” about what they were being tested for, and should be informed of a diagnosis in person.
She described her treatment for hepatitis C as “almost like an out-of-body experience”, adding: “It certainly does weird things to your head as well as your body.”
She said it was “a bit like walking through deep water”, adding: “I can’t really explain how it was but it was unbearable.”
She responded quickly to the treatment and was clear of the virus after a month.
“I was very lucky. I was one of the fortunate ones,” she said, adding that she felt “a bit fraudulent” about being at the inquiry.
