There can be “no victory” for people affected by the worst treatment disaster in the history of the NHS, a campaigner has said, as officials prepare to publish the final report of the Infected Blood Inquiry.
Jason Evans’ first campaign meeting took place when he was aged one – when his father, infected with HIV and Hepatitis C after receiving the Factor VIII blood product, took him to meet their MP to seek advice on potential compensation.
Mr Evans has few memories of his father Jonathan Evans, who died when he was just four years old.
The 34-year-old, from Coventry, said the last recollection he has of his father was on his fourth birthday, when he remembers being with his ill father who had been “ravaged” by Aids.
Mr Evans said that years of tireless campaigning have, in some way, been a way to find some connection to his father.
Now a father himself to a 13-month-old girl, Mr Evans said that the scandal had “blanketed” his entire life – from his father’s death, to seeing his mother “crumble” in the aftermath, to being called “the Aids boy” in school.
He said that he started the Factor 8 campaign group in 2016 because he “couldn’t let it go”.
“For me personally, I first went to a meeting with my dad to see his MP in 1990 when I was one year old,” he told the PA news agency.
“And the purpose of that meeting was my dad was asking his MP about compensation for victims infected blood scandal.
“That fight has gone on for me ever since then – 30-plus years, and it feels like we might finally be at the end of that very, very long road.”
On the publication of the final report of the Infected Blood Inquiry, he told PA: “This whole scandal has blanketed my entire life.
“For me, there was no life before the infected blood scandal – my first memories of my dad are of him dying of Aids, being at his funeral, dealing with the fallout of that, seeing my mum just crumble to pieces because of everything that happened, being at school and hearing kids call me ‘the Aids boy’ and me not knowing why they were saying that and having to ask my mum what Aids is.
“My whole life it was just there.
“I think to some extent, I have become quite numb to it.
“A question I’ve thought about is: ‘What will I tell my one-year-old daughter about this when she’s older?’ and I’m really not sure. One thing I do know is that I don’t want this scandal to alter the life course of another generation of my family.
“It certainly altered the trajectory of my life and what I otherwise may or may not have done with my life.”
He added: “When I first decided to set up Factor 8 and to go at this – not part-time, not in the evenings, but 24/7 – a number of people that around me said the same thing, which was: ‘This has ruined your dad’s life and ruined your mum’s life, do you really want it to ruin yours as well?’
“And it’s something I thought about very carefully and I just couldn’t let it go… I went to sleep thinking about it and I woke up thinking about it.
“It was always about the truth in the answers – the biggest mystery in my life not knowing my father, I think in some strange way this whole thing has been about trying to find some connection to my dad.”
The Inquiry has announced the publication date for its Report.
For more information, and to find out how to register, see here: https://t.co/R8JPyN39c7
— Infected Blood Inquiry (@bloodinquiry) January 17, 2024
He continued: “I think when the inquiry does issue that find a report and we get that truth and get those answers, what does it mean? It doesn’t bring my dad back, he’s dead, that’s the way it is.
“And do I feel better now? Do I feel better knowing that it could have been avoided? Do I feel better knowing that actions could have been taken which meant he wouldn’t be dead? No.
“And that’s why I think there’s no victory in this campaign.
“As far as I see it, maybe there will be compensation, maybe some people will be stripped of their honours, maybe some doctors will be struck off the General Medical Council register – none of it is a victory in my eyes.
“There is no victory in this, there is no glory, there is no day where we say: ‘Wasn’t this campaign of great success?’”
Mr Evans’ father was born with a blood clotting disorder haemophilia and in the 1970s and 1980s he was given the Factor VIII product.
“My father was infected with hepatitis C, he was also infected with HIV, and he died in 1993,” he said.
“He was age 31 so I am now older than he was when he died.”
Mr Evans’ father was adopted at a young age.
He said that after his father’s death he decided to track down his father’s biological family.
During his searches he discovered that his uncle also died after he was infected with Hepatitis C and HIV from Factor VIII products.
Asked about memories of his father, he said: “Very little to be honest.
“My dad knew he was dying and he took many home videos, which I’ve got and replayed over and over and over and over again growing up because that’s really all I had.
“The last time I saw my dad alive. It was my fourth birthday in 1993. He was at his parents house – he had chosen basically to die there and he was in a bed very ill – Aids just ravaged him.
“I can remember being stood in this room holding the first Gameboy, the grey one with the purple buttons, and just not really having any understanding of what was really happening.
“But I remember that day clearly. I guess somehow my mind knew to retain that.”
