Contaminated blood may have been given to NHS patients after the date when transfusions were supposed to have screened out hepatitis C, the infected blood inquiry has been told.
Testimony from a woman who believes she contracted the disease during treatment for cancer in 1992 also revealed how blood batch numbers had been mistranscribed in health service records, making it impossible to trace donors.
Evidence given by Carolyn Challis, now 63, has raised questions about the accuracy of assurances given by medical authorities that blood was safe after a cut-off date of September 1991. Compensation schemes have refused to pay out to claimants after that date.
Challis, who lives in Devon, was diagnosed with non-Hodgkin lymphoma and received three blood transfusions during 1992 while undergoing chemotherapy.
Her health deteriorated, she told the inquiry, and as she prepared for a bone marrow transplant the following year she was found to have contracted hepatitis C. Despite being given only a 50/50 chance of living and being jaundiced, she survived.
Over the following years Challis developed chronic fatigue, “brain fogging”, tinnitus and other symptoms she believes were caused by hepatitis C. She was eventually treated and the virus cleared from her body.
In 2004, she applied for a grant from the Skipton Fund, a state-backed body providing financial support to patients who contracted hepatitis C through NHS blood or blood products before September 1991. She was repeatedly turned down on the grounds that no awards could be paid after that date.
She later tried to track down details of the blood she had been given through the hospital and transfusion service. “I went through the batch numbers,” she told the inquiry. “I obtained the copies of the reports and I cross-referred the batch numbers and [discovered] they had not been transcribed exactly right.”
The inquiry, which is being held in central London, was shown images of the mistakes on her medical records showing how “0’s” had been miswritten as “2’s” and other recording errors.
The transfusion service had previously told her that none of their records showed any of the donors whose blood she had received were infected with the virus. The transcription errors raise questions about whether the correct donors had been checked. Challis believes there could have been no other sources of her infection.
At the end of her evidence, she pleaded for the NHS to carry out national screening of everyone. “There is a £12 test, OraQuick, which is now available, and a cure,” she said. “The NHS is talking about eliminating hepatitis by 2025 but they are not going to do this unless they test everybody.”
Challis said she wanted greater medical and public awareness that infected blood was still slipping through the screening process after 1991.
Outside the inquiry, Rachel Halford, the chief executive of the Hepatitis C Trust, confirmed the charity was aware of other cases where patients had sought help reporting they had been infected by transfusions after September 1991.
“A lot of people believe errors were made,” Halford said. “There’s a strong case building that more people may have been infected after 1991. It may be because antibodies [used for spotting contamination] don’t appear in the blood up until six months after infection. It may have been from frozen blood taken earlier [and not tested].”
The latest NHS estimate is that there are 113,000 people in England infected with hepatitis C. On the day the inquiry opened, the health service announced it was launching a treatment programme with pharmaceutical companies to identify and treat sufferers.
The inquiry also heard evidence from Steve Nicholls, a 52-year-old with haemophilia from Farnham in Surrey, who contracted the virus after being treated with blood products.
At the age of eight, he was sent to Treloar’s school for children with disabilities outside Alton, Hampshire. He was one of 89 boys at the school with haemophilia offered treatment onsite. Of his contemporaries, he believes, 73 are now dead.
His final years at school were overcast with media stories about the dangers of Aids and how haemophiliacs were at high risk of catching the disease.
Nicholls and his friends made a pact. “It was my last year at a school when the first haemophiliacs were starting to die and everyone was really scared.
“We realised that this is really serious, and this is killing us or killing haemophiliacs,” he told the inquiry. “There were four or five of us in a room and we said: ‘This is going to happen to us, we can see it.’
“We said: ‘Right, we’ve stuck together right through our childhood. If it happens and it kicks off we’re going to rely on the person still alive to pursue it and find out why and what went wrong.’ I’m the only one left. That’s tough. I think about that every day.”
It was only after leaving the school that Nicholls was diagnosed with hepatitis C in 1991. One of inquiry’s aims is to investigate treatment that students at Treloar’s received.
He worked in the parks department of a council until he was discovered to be haemophiliac and asked to leave. “They made it very clear that they were uncomfortable with me being there,” he told the inquiry. Nicholls eventually married and had a family.
Another witness, Kate Ashton, who contracted hepatitis C after multiple transfusions during cancer treatment, told the inquiry she had become depressed as a result of the infection and had tried to take her life in 2013.
She discovered she had hepatitis C in 1997 when a doctor mentioned it in a letter. “Since becoming infected and as the years have gone by I have suffered more and more from depression and I have been told by the liver specialist that depression is something that is often linked with hepatitis C.”
The inquiry heard that she was pronounced clear of hepatitis C last year, but continues to need six-monthly checks because of the cirrhosis damage to her liver.