When Kevin Roberts was 12 years old he went to hospital for the first time to have two wisdom teeth removed.
It was a routine procedure, but was the start of an ordeal that shattered his childhood and early adult life. He was given a blood product to replace Factor 8, a clotting protein, and now believes that this product infected him with hepatitis C, a blood-borne virus that can cause life-threatening liver disease, including cancer.
Roberts is one of the victims of the contaminated blood scandal which killed about 3,000 people and infected about 30,000. But unlike many survivors he has never received a penny in compensation. He is among a group of people affected by the scandal whose claims have been rejected after their medical records were destroyed, went missing or were withheld.
Roberts, 52, who lives in Hayle, Cornwall, and runs a beach-side cafe, said he had been repeatedly turned down for compensation by the Skipton Fund, a support scheme, and the England Infected Blood Support Scheme (EIBSS) because he was unable to provide medical records showing when he was infected with hepatitis C.
He said: “It’s the NHS that should be finding these records. Why is it that the victims have to be a doctor, a solicitor and a detective and find their records to claim support from a scheme run by the NHS?”
Roberts said he became extremely sick after his operation at the former City hospital in Truro to remove the teeth. He said: “I got seriously ill and jaundiced. My entire body was yellow, even my eyes. I had excruciating pain, like there was glass in my joints.”
The family was told the illness was “growing pains” and he would get better. Roberts said he lived the next few years with a “fog” in his mind and severe weakness. “I went through the early part of my life thinking it was normal to be in pain and weak.”
Roberts had been diagnosed with the inherited blood clotting disorder von Willebrand when he was 11. He says that when he went in for regular three-monthly checks after his wisdom teeth operation, a nurse would appear in personal protective equipment, but the family was not told he had been infected.
On one occasion when he was 18, the medical team took 14 test tubes of blood. He asked a doctor why so much blood was required and was told: “Don’t you know? We’re testing you for HIV. You’ve already had hepatitis A, B and C and you still have C.” He says he was told by the doctor: “You may not make it to 25.” Roberts says he went home and “cried for two weeks”.
“I knew about being ostracised and that no one could know,” he said. “The HIV test came in the envelope and I couldn’t open it. I left it for more than two weeks unopened.” When he did open it, he discovered he had not been infected with HIV.
About five years later he was told it seemed the hepatitis C had cleared from his body. He said: “It took several years to sink in. I thought I was going to die when I was 25. I thought I’m going to burn myself out and live the best life with a few pennies.”
Roberts applied for financial support to the Skipton Fund, a scheme that made payments to certain people who were infected with hepatitis C, but he says a solicitor acting on his behalf was told by hospital staff his medical records were missing. He applied on two occasions to the fund but was turned down, and has since also been turned down by the EIBSS, despite obtaining some of his records.
The Royal Cornwall Hospitals NHS Trust, which holds Roberts’ records, said this weekend: “We are sorry we did not fully answer Mr Roberts’ concerns about his care when he first raised these with us. His records have not been destroyed and a meeting is being arranged for him to go through these in detail and explain the treatments he has received since 1984.”
Susan Lee, 45, who works for the Hepatitis C Trust supporting people infected by contaminated blood, said: “Most of our callers are people who have had blood transfusions and are trying to access support through one of the schemes. A lot of these people do not have medical records because of the lapse of time.”
Lee said the scheme would consider other evidence, but that people who were infected by contaminated blood and did not have their records were still being rejected for compensation.
Ann Swan, 75, who lives near Devizes, Wiltshire, had a blood transfusion at London’s Middlesex hospital in 1976, and was told only in 1995 she had been infected with hepatitis C. She was later told there was “no trace” of her records and says she considered she was unable to apply for compensation as she could not confirm what treatment she had been given.
Swan, who is now cured of the infection, said she was in the process of applying for compensation from the EIBSS. “There are so many people who have had no money. No political party has wanted to pay for this. It’s going to be a huge bill.”
Gene David, 58, from Manchester, told the infected blood inquiry, which took evidence from 2019 to 2023, that he was given a blood transfusion because of severe bleeding after an operation to remove his tonsils in July 1985. Four years later he was told he was infected with HIV.
David realised he may have been infected during his operation after seeing a report on the BBC in 2017, but was told by the hospital that his medical records had been destroyed. He has been turned down for compensation. “It has been very difficult to obtain my records and I am still fighting to do so,” he said.
The infected blood inquiry is due to publish its results on 20 May. It has been reported that the total compensation bill for the blood scandal could reach £10bn.
