Aged just 11, brave Rob Brown sits hooked up to hospital drips… unaware he is being given a blood transfusion that will slowly destroy his health.
Rob, now 60, shared the image from 1974 of the treatment that gave him hepatitis C – which medical records indicate was known to doctors, but kept from him. The transfusion left him destined to be one of thousands anxiously hoping for answers in an official report on the blood scandal to be published tomorrow.
Rob was given the contaminated blood at Farnham Hospital, Surrey, after an op to remove his appendix went wrong. He had the bottle attached to his jugular vein during a 41-day hospital stay – months after the initial surgery – when it was found dressings had been left in his body, causing abscesses and gangrene.
Infected
Rob had to have multiple ops and was given more than 100 litres of blood. And after years of research, he is certain the bottle in this photograph had the serial number 87474 – and was the one that infected him with hepatitis.
Now married with a grown-up son and daughter, Rob tells us: “It’s a unique photo. The reason there were so many taken of me in the early stages is that I died for nearly 11 minutes. I had the last rites twice. That picture was taken by doctors as they thought I wasn’t going to be around tomorrow.”
Rob is one of an estimated 30,000 people in the UK given infected blood or blood products up until the mid-1990s. More than 25,000 got hepatitis C, while a further 1,200 ended up with HIV in treatments for haemophilia.
An estimated 3,000 people have died as a result. And tomorrow, the long-delayed report into the infected blood scandal will finally be published. The bill for compensation is expected to run into billions of pounds.
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Collects)
Astonishingly, Rob only learned he had hepatitis when he was 43 – from a blood test ahead of a family holiday to Cuba. He went on to scour more than 900 pages of his medical records, where he found doctors’ notes from weeks after the photo was taken, recording that he had “hepatitis following blood transfusions”.
He now believes the diagnosis was “wilfully hidden” from him at the time. Rob, of Wiltshire, now has a string of conditions including spinal injury, chronic pain and liver damage – many stemming from efforts to treat his hepatitis.
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He says: “For the first time in my life I get massive anxiety. I’ve always been a survivor, never a victim. I’ve never really suffered depression. But recently it’s like a Dementor [the evil creature from Harry Potter ] sucking all the happiness out of me. Then it disappears really quickly. I get huge mood swings – I shout a lot at my wife and the kids when they don’t deserve it. I regret that. That bit’s really crap.”
His plea to PM Rishi Sunak ahead of tomorrow’s publication is clear: “Just do the honourable thing for once – forget the politics.”
“A terrible family curse”
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Simon Beddow’s father John, and two of his uncles were born haemophiliacs – a condition he describes as a “terrible family curse.”
All three brothers were infected with HIV and hepatitis C from contaminated blood products, and died. He was just a child when his Uncle Norman died in the early 1980s. Norman was in his early 20s, and developed full-blown AIDS, as no HIV treatments existed at the time.
Simon’s father, John, was 52 when he died in 2008. His uncle Mark died in 2010 when he was 47.
“My dad’s HIV was actually under control,” Simon said. “What finished him off was the hepatitis C, which was causing scarring of the liver, which ends up in cancer. It’s pretty grim when you think about it,” he said. “And I do think about it daily.”
Asked what he wants to see happen on Monday, he said: “Realistically, anyone who’s been given HIV and hepatitis C, I think they should be given enough money that they never have to worry about it again.”
But he said he’d forfeit all that for those responsible to go to prison.
“They knew what they were doing,” he said.
“They knew. And they just kept doing it. I want answers. I want names.
“I want to see a face and I’ll say ‘you murdered my dad and everybody else. You are responsible for all this.”
“That’s what I get so angry about. My husband would still be…we would be retired together. We had plans to go to France.”
Greengrocer Barry Currie was just 61 when he died.
By 2009, he had undergone two liver transplants. His heart and lungs had been damaged and he’d lost the ability to speak.
He asked for his life support to be switched off in August of that year, with his official cause of death listed as pneumonia and cirrhosis.
But the real cause was being infected with hepatitis C 33 years earlier, from a contaminated blood transfusion. He’d gone into hospital to have his wisdom teeth out.
“It’s heartbreaking, isn’t it?” Gill, his widow told this newspaper. “It wasn’t until 1994 he started to feel unwell, and the doctors just said it was stress-related.”
She said he was eventually diagnosed in 2004, after a specialist took blood samples.
He left behind four grown-up sons.
“My youngest had gone to get his GCSE results,” Gill said of son Matthew.
“He phoned me as they were administering the first drugs to take Barry off the ventilator, so he got to hear Matthew’s GCSE results before he died. That was lovely.”
Looking ahead to the publication of the report, she said: “I hope things aren’t moved again. More for the people who are actually ill. Some people have got a six-month prognosis hanging over their heads, and this has been going on for six years.”
She added: “I’m very lucky. We worked hard. I own my own house and my children work. But these people, they’ve lost everything.”
“It’s the government’s fault,” she said. “I don’t blame the NHS at all. An accident can happen. But when you know the blood is contaminated and you carry on using it, that is unforgivable.
“That’s what I get so angry about. My husband would still be…we would be retired together. We had plans to go to France. These people who are ill and dying, they need to know what’s going to happen to their loved-ones. They need compensation.”