‘Best day ever. I just wish I were younger’: the voices of infected blood victims | Contaminated blood scandal
The final report on the infected blood scandal details the litany of government and healthcare failures which led to thousands of people being infected with HIV and Hepatitis C. It contains harsh words for doctors, ministers and civil servants, but it also aims to shine a light on the heartbreaking stories of pain and loss from victims and their families. Here are some of their reactions to the report in Westminster on Monday.
‘It’s restored my faith in humanity’
Jacquie Stephens, 70, Bristol
Stephens spent most of her life feeling like a bad mother after being left mysteriously exhausted following childbirth in 1981. Doctors diagnosed her with postnatal depression and admitted her to a psychiatric unit, but that assessment never felt quite right.
She was later diagnosed with Hepatitis C, which started to provide answers, but things only fell into place on Monday.
“The beauty of this now is that – my kids suffered badly because of me; I wouldn’t tell them what had happened to me and I think they just thought I was a bad mother – now they’re able to see what it was really. I just feel so light about that, because I felt so incredibly guilty all my life.
“This day has been the best day ever. I just wish I was a bit younger, because 70 is too late for me. But it’s not too late for my kids. I feel completely vindicated, that I can rebuild my life. It’s restored my faith in humanity. [The report’s author] Sir Brian [Langstaff] is absolutely the best … even though I’m crying my eyes out I feel really good.”
Stephens said most people were feeling “thrilled to bits”, though some pieces were missing for her. She wanted to see Rishi Sunak “look us all in the eye and apologise”, and for a criminal prosecution to happen. She also has doubts about how the compensation scheme will work.
She said she felt empowered to seek medical care having previously found doctors reluctant to give her scans. “By the time you’ve been through all the stigma and all the things that have gone wrong, you think you’re the worst person in the world; you don’t even go to the doctors”
‘I feel that the answers I was looking for are there’
David Abdo, 55, north London
When Abdo was a teenager, his father went into a coma after receiving a kidney transplant. He was later diagnosed with hepatitis C, and died of liver cirrhosis in 1990, at the age of 52.
He recalls “insensitive questions” being asked by doctors about his father’s sexual preferences and whether he used drugs, which shook their image of him as a “very family oriented” man.
He also remembers a strange atmosphere of silence, including unexplained blood tests for other family members. “No one ever told us anything. We asked loads of questions but they were always diverted, and we still didn’t know the reasons why he had hepatitis. It was like the shutters were pulled down on you,” he said.
Years later, as an NHS staff member, Abdo started to try to build up a picture. He spent long hours trying to track down his father’s medical records and drawing up timelines, which revealed that his hepatitis C was due to receiving infected blood during his kidney transplant.
Monday’s report represents the missing piece of the puzzle. “It’s really hard,” Abdo said. “Thirty years of not knowing anything, being just pushed to the side and all of a sudden finding out all this information that’s really supported all those things you’ve been thinking.
“I had to look after my mother; she had a breakdown when my father passed away. I had to step up as a family member to look after her. Even now I feel numb, I feel a bit overwhelmed. I feel that the answers I was looking for are there. I know it’s not just us.
“I feel happy and released of this pressure, everything’s backing me up, the report’s there.”
‘I’m very angry with the government’
Jilaen Sherwood, 58, Worcestershire
Sherwood was infected with hepatitis C in a transfusion she received after a motorcycle accident at the age of 15. She experienced bad stomach pain, eating problems, fatigue and cognitive difficulties, but was only diagnosed in 2016.
She said she still finds that many medical professionals do not understand her story. “They just don’t seem to want to know. I’ve given up with them, I’ve got no faith in a lot of medical doctors after all this. It’s just up to me to look after myself. I’m not well all the time, and I feel a lot older than I am.”
Sherwood said her emotions were complicated, as she felt she was still processing the report’s contents, and she was concerned by the “loose ends” that remained. She wanted to see accountability, prosecutions and compensation for everybody involved, including those who have lost family members and children, handed out in ways that don’t replicate the “stress and anxiety” she endured in applications for ex-gratia payments.
“I’m very angry with the government, and I just think it’s horrific. I’m sad for everybody that’s lost people. I’ve met a lot of people that have already died. I think myself lucky – I’m not lucky, obviously – but I’m luckier than some, I’m still here at the moment.
“I want to feel well enough to enjoy some of my life. Too many years have been taken from me.”
‘I felt respected, I felt heard’
Jackie Britton,62, from Fareham, Hants
Britton was infected in 1983, and learned she had hepatitis C in June 2010. She paid privately to have a liver biopsy and blood tests “because I felt so ill and I just wanted to know how close to death I was”.
Yet when she went to see the “unhelpful” consultant in her local hospital, she was surprised to be asked: “Why did you pay for all this, why on earth did you do this?”
This, combined with other negative experiences, led her to seek out better care at King’s College London, where she is relieved to be able to obtain her results on the same day as her scan, eliminating the “traumatic waiting time” to find out whether she has liver cancer.
She said she feels all victims deserve the same care, instead of the “postcode lottery” at present. She welcomed the recommendation for improved support set out in the report, as well as its equal representation of transfusion victims along with haemophiliacs, of whose plight she feels there is greater understanding.
“It’s tough living with this and it was totally unnecessary because they could have found me years and years ago before I had cirrhosis and I could have had treatment then,” she said.
“Today I’m just grateful that I’m here. I wouldn’t have wanted to be anywhere else. I always had confidence in Sir Brian; he always said he would put us in the middle, front and foremost, and he has done. I felt respected, I felt heard. And he was true to his word that wherever the evidence led he wouldn’t fear going to and calling people out on it, and he’s done exactly that. He’s already got a knighthood, he should have a sainthood.”
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