‘Best day ever. I wish I was younger’: the voices of infected blood victims
TThe final report into the contaminated blood scandal details the litany of government and health care failures that led to thousands of people becoming infected with HIV and Hepatitis C. It contains harsh words for doctors, ministers and officials, but it also aims to shed light to shed light on the heartbreaking stories of pain and loss of victims and their families. Here are some of their responses to the report in Westminster on Monday.
‘It has restored my faith in humanity’
Jacquie Stephens, 70, Bristol
Stephens felt like a bad mother for most of her life after she was mysteriously left exhausted after giving birth in 1981. Doctors diagnosed her with postpartum depression and committed her to a psychiatric ward, but that assessment never felt quite right.
She was later diagnosed with Hepatitis C, which started to provide answers, but things didn’t fall into place until Monday.
“The great thing about this now is that – my children suffered greatly because of me; I didn’t want to tell them what happened to me and I think they just thought I was a bad mother – now they can see what it really was. I just feel so light about it because I’ve felt so incredibly guilty my whole life.
“This day was the best day ever. I wish I was a little younger because 70 is too late for me. But it is not too late for my children. I feel completely justified in rebuilding my life. It has restored my faith in humanity. (The author of the report) Sir Brian (Langstaff) is absolutely the best… even though I’m crying my eyes out, I feel really good.”
Stephens said most people felt “excited to the core,” although for her there were some pieces missing. She wanted Rishi Sunak to “look us all in the eye and apologise” and for criminal charges to be brought. She also has doubts about the operation of the compensation scheme.
She said she felt empowered to seek medical help after previously finding doctors were reluctant to give her scans. “By the time you’ve gone 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 doctor”
‘I feel like the answers I was looking for are there’
David Abdo, 55, North London
When Abdo was a teenager, his father fell into a coma after undergoing a kidney transplant. He was later diagnosed with hepatitis C and died of cirrhosis of the liver in 1990 at the age of 52.
He recalls doctors asking “insensitive questions” about his father’s sexual preferences and whether he used drugs, shaking their perception of him as a “very family-oriented” man.
He also remembers a strange atmosphere of silence, including unexplained blood tests on other family members. “Nobody ever told us anything. We asked a lot of questions, but they always got distracted, and we still didn’t know why he had hepatitis. It was like the shutters had been pulled down on you,” he said.
Years later, as an NHS worker, Abdo began trying to build an image. He spent many hours tracking down his father’s medical records and creating timelines, which showed 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, just being cast aside and suddenly discovering all this information that really supported all those things you were thinking.
“I had to take care of my mother; she had a breakdown when my father died. I had to act as a family member to take care of her. Even now I feel numb, I feel a little overwhelmed. I feel like the answers I was looking for are there. I know it’s not just us.
“I feel happy and released from this pressure, everything supports me, the report is there.”
‘I am very angry with the government’
Jilaen Sherwood, 58, Worcestershire
Sherwood became infected with hepatitis C through a transfusion she received after a motorcycle accident at the age of 15. She experienced severe abdominal pain, eating problems, fatigue and cognitive problems, but was not diagnosed until 2016.
She said she still finds many medical professionals don’t understand her story. ‘They just don’t seem to want to know. I gave up on them, I don’t trust many doctors after all this. It’s just up to me to take care of myself. Things don’t always go well for me, and I feel a lot older than I am.”
Sherwood said her emotions were complicated as she felt she was still processing the contents of the report and was concerned about the “loose ends” that remained. She wanted accountability, prosecution and compensation for all involved, including those who have lost family members and children, to be doled out in a way that does not reflect the “stress and anxiety” she experienced in applying for ex-gratia payments.
“I’m very angry with the government, and I just think it’s horrible. I feel sad for all those who are lost people. I have met many people who have already passed away. I think I’m lucky – of course I’m not lucky – but I’m luckier than some, I’m still here at the moment.
“I want to feel good 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 in June 2010 that she had hepatitis C. She paid privately for a liver biopsy and blood tests “because I felt so sick and I just wanted to know how close I was to death.”
But when she visited the ‘unhelpful’ consultant at the local hospital, she was surprised when she was 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 better care at King’s College London, where she is relieved to be able to get her results on the same day as her scan, eliminating the “traumatic wait” to find out if she has liver cancer.
She said she believes all victims deserve the same care, instead of the current “zip code lottery.” She welcomed the recommendation for improved support set out in the report, as well as the equal representation of transfusion victims and haemophiliacs, whose condition she said is better understood.
“It’s hard to live with this and it was completely unnecessary because they could have found me years ago before I developed cirrhosis and I could have gotten treatment then,” she said.
“Today I’m just grateful to be here. I wouldn’t want to be anywhere else. I have always had confidence in Sir Brian; he always said he would put us in the middle, front and center, and he did that. I felt respected, I felt heard. And he was true to his word that wherever the evidence led, he wouldn’t be afraid to call people out on it, and that’s exactly what he did. He already has a knighthood, he should have a sainthood.