'We were dying at their hands': Leicestershire victims of infected blood scandal speak out

Two Leicestershire men who are among the more than 33,000 people in the UK who were treated with infected blood/and or blood products have spoken of the trauma they have endured as a result of what has become widely known as the biggest treatment disaster in NHS history. The final report of the Infected Blood Inquiry is due out today (Monday, May 20).

Mick Mason and Suresh Vaghela were among the thousands of haemophilia patients infected with both hepatitis and HIV after being administered Factor VIII, a drug invented in the 1970s made of donated blood plasma - some of which was contaminated with deadly viruses. Only around 250 of those patients are still alive today.

Suresh, 61, of Bushby near Leicester, received Factor VIII while undergoing treatment for his haemophilia in the late 70s. In 1981 he showed signs of jaundice - a result of hepatitis. In 1984 he was given just two months to live.

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He said: "It tarred every aspect of my life. It's been like a horror story."

Both Suresh and his brother, Praful, were haemophiliacs and received contaminated blood products. Both were given just a couple of months to live and Praful died in 1995, aged 36.

While he has managed to survive into his 60s, the effects of the infections - particularly the strong medication he was given for the HIV virus - led to him having to give up work in 2004. He had been giving a presentation to colleagues when he found he could not remember what he had been talking about and soon after that it was suggested he give up working.

Since then he has been campaigning for justice for people like him, but that has not always been easy - particularly until Prime Minister Theresa May's announcement in 2017 of the inquiry. He said: "We felt like crazy people, shouting away."

The news that he had been infected with hepatitis B, hepatitis C and HIV left him "shell-shocked" and the realisation that the NHS had betrayed him by covering up what was happening and continuing to knowingly use contaminated blood was a further bombshell.

He said: "We put the doctors on pedestals and trusted them, like we would parents. When they gave us the treatment we had no reason to question it. But there were those in the NHS who knew from at least 1983 what was happening.

"They had an agenda - the pharmaceutical companies were treating them very well and they decided to inflict this horrendous treatment on everybody to stay pals with the companies and save money.

"The more you learn the more you ask yourself, 'How can any human make decisions like that?'

Having HIV, Suresh says, meant he would never be able to have children because his wife, Rekha, could contract the disease. He said: "When you get married you're expected to do things - go away for a honeymoon abroad, have kids.

"I couldn't do any of those things. I didn't know why she'd married me."

Factor VIII was designed to help the blood clot in people with haemophilia - a condition in which people have very thin blood and are at risk of fatal bleeds. The drug was made by pooling blood plasma from numerous donors and it took only one infected person to contaminate a whole batch.

As well as the betrayal of Factor VIII's continued use despite the known risks, Suresh felt cheated by the £20,000 compensation he and the other victims were talked into accepting in the early 1990s - along with the requirement they sign waivers to say they wouldn't claim any more money.

He said: "They told us they needed 100 per cent of us to sign the waivers or none of us would get any money, which wasn't true. They said we'd let down the other people if we didn't accept it but they just wanted to shut us up and avoid having to pay us any more when other infections turned up.

"We couldn't take any action until Theresa May said she would start this inquiry." Suresh will be in London today for the release of the inquiry's report. He gave evidence to the inquiry himself back in 2019.

He hopes the results of the inquiry, which will be released at about 11am today, will lead to some sense of justice. He said: "I can't believe people could do what they did.

"We were dying at their hands. The whole thing has been a shambles and so many, including my brother, are already dead. And so are some of the people who are to blame."

He said the Horizon scandal that led to the wrongful imprisonment of many sub-postmasters proved the government was "still doing it". He said: "It makes you wonder if they will ever learn."

As well as life-long health problems, financial struggles and the fear of death, a major effect on the victims' lives has been the stigma.

Mick Mason, 57, who lives in Heather, near Ashby, knew that if anyone found out he was a haemophiliac they were likely to realise he was infected with HIV - a disease that carried a lot of stigma in the 1980s. It took him about 18 months before he told his father about his situation and ever since he found out about the infections he has also avoided making close friendships.

He said: "I was given Factor VIII from the age of 13 and contracted hepatitis B and hepatitis C, as well as HIV, which I was told about when I was 18. Then in 2000 I was told I was possibly infected with CJD (Creutzfeldt-Jakob disease), too.

"There's no test for that - they only know you've had it after you've died. So I could have that - on top of everything else - and that was the thing that tipped me over the edge."

When he was told he had been receiving the infected blood product the doctors said he probably only had six months to live. He said: "My doctor told me, you've got six months so enjoy your time - but don't have sex with anyone.

"My whole world just blew apart. I couldn't have children, couldn't get a mortgage or life insurance. It was hard to have relationships - I would split before we got close so I wouldn't have to tell them.

"I daren't tell people I was a haemophiliac in case they put two and two together. I didn't have close friends. I knew there was so much stigma around HIV.

"Back then people's attitude towards anyone with HIV was, 'They're gay, they deserve it.'

"One haemophiliac I knew had 'AIDS' written on his house in graffiti and had to move. I had been training to be a post-mortem technician but after I was accepted for a job at a hospital my employer saw my medical records - which they shouldn't have had access to - and told me I couldn't work there."

As as haemophiliac, he had regular treatment and got to know a lot of others with the condition. But about five out of every six people he knew who was treated with Factor VIII is now dead.

"I am one of the lucky unlucky ones," he said. Like Suresh, Mick has been fighting for an inquiry and will also be in London today for the final report.

He has listened to the evidence over the past five years - also giving evidence himself - and has been shocked by what he has heard. "It's the biggest cover-up in NHS history and one of the biggest ever cover-ups by the government.

"It's a historical inquiry. I'm still angry but, for me, it's now about what the inquiry reports and how the Government responds."