The first witness of the day was Mr AR, a retired doctor who spoke of his experience working in haemophilia centres as well as his experience as someone who has been infected with hepatitis C through contaminated Factor VIII products.
Mr AR explained that when the worked at the Queen Elizabeth Hospital in Birmingham as a junior doctor in 1975, the treatment that was originally administered was cryoprecipitate. This then changed when a new doctor took over the centre – cryoprecipitate was phased out and replaced with NHS Lister Factor VIII. Within weeks the supply changed once more until the treatments available were primarily American Factor VIII products, with the children’s hospital taking the bulk of the Lister products.
Mr AR is a sufferer of mild haemophilia A and he had treatment for a bleed in February 1976 with Factor VIII product at the Queen Elizabeth Hospital. He noticed that he had become jaundice in March. He was soon after tested for hepatitis and it was concluded that he had contracted what was then known as non-A, non-B hepatitis (hepatitis C). At this time, he was told that this would increase his risk for liver cirrhosis and cancer. Following his own diagnosis, Mr AR spoke to virologists researching into hepatitis and offered to help in their study. For this study, Mr AR took blood samples from haemophilia patients before and after treatment with Factor VIII products. Before he took these samples, he explained to the patients why he was taking the samples and how he himself had contracted hepatitis from these blood products.
Mr AR left the Queen Elizabeth Hospital after 1976 but continued to work with haemophilia patients until he became a GP in 1984. Mr AR described how he began treatment for his hepatitis C in 1993 and the side effects he experienced over the 102 weeks of treatment. The symptoms left him unable to work and he had to retire on ill health grounds at 45. By 1996 Mr AR had cleared the virus and worked intermittently as a GP as well as working in Germany for a time with the Royal Army Medical Corps. Mr AR explained that he eventually retired once more at 59 and noted that his financial position is much worse than what it would have been if he had been able to continue his ordinary career as a GP. Mr AR further said that from his experience working as a GP over the years he has found that general practitioners were not aware at all of the Hepatitis C problem. He believes that all blood transfusion services have records and that there should be a proper look back from GPs into who received bad blood.
Malcolm and Violet met in 1978 and married in 1980. Violet noted that when they first met Malcolm was very healthy and active considering he was a haemophiliac. In 1981 Malcolm received Factor VIII treatment for the first time since 1974 for an operation. Malcolm said he was reluctant to have this treatment because of stories and rumours surrounding Factor VIII products, but he was assured by his doctors that it was safe.
Months later Malcolm was jaundiced and was found to have developed non-A, non-B hepatitis (hepatitis C). A letter between doctors referred to the need for Malcolm to cut down on drinking and improve his diet. This is something Malcolm and Violet were furious about as Malcolm’s diet was carefully managed and Malcolm rarely drank alcohol at all.
Malcolm and Violet spoke about a meeting in 1983 where the non-A, non-B hepatitis was discussed as well as the possibility of haemophiliacs being HIV positive. Although Malcolm tested negative for HIV, Violet and Malcolm remained concerned about the possibility, as they were informed the negative test was not definitive. Violet explained that she was concerned that either of them would suddenly become ill and die. It was not until 1988 that Malcolm and Violet felt confident enough in the test results for HIV that they decided to have another child.
Malcolm described the side effects he has experienced from having hepatitis C, noting how he struggled to manage the symptoms alongside his job as a lawyer. Malcolm shared that as a result of this he had a breakdown in 1995 and was diagnosed with clinical depression. Because of his ill health Malcolm had to retire at the age of 49. Although the hepatitis C cleared in the 1990s, he continues to experience the related symptoms. Violet explained that because of Malcolm’s poor health there were times where she effectively had to raise their children on her own. Furthermore, when he had to retire early there was a financial burden put on her to work longer hours and retire later.
Mrs AS gave evidence about her late husband who passed away after being infected with hepatitis C from contaminated blood products. Mrs AS explained that she met her husband in 1986. He was healthy and together they ran a successful business. In 1987 her husband was in a road traffic accident and received a total of 8 units of blood whilst being treated for his injuries. She noted that her husband was never contacted during the 1995 look back exercise as someone who had received blood in the relevant time frame.
Mrs AS described multiple occasions over the years where opportunities were missed to identify her husband’s infection. On one occasion in 1998 he had to have a liver function test to obtain his driving licence back. The result was that there was clearly a problem with his liver. At this time he was tested and found to be negative for hepatitis A and hepatitis B, but the lab did not test him for hepatitis C.
Her husband eventually found out he had hepatitis C in 2004, 17 years after he had been infected. A liver biopsy revealed that by this time his liver was 25% cirrhosis and 75% cancer, he was told he had 2-3 months to live. Although her husband remained calm and kept a brave face, he passed away in January 2005. Mrs AS shared how her husband’s passing had a massive impact upon her life. She described the financial difficulties she had which resulted in her losing her home and being homeless for a period of time. Mrs AS shared how the situation has left her questioning why this happened to her husband. She questions why her husband’s infection had failed to be identified in the look-back exercise and no attempts were made to trace him Furthermore, the medical professionals who treated him over the years failed to test him for hepatitis C earlier despite the indications of liver problems shown on his records.
The last witness of the day was Kerry who gave evidence regarding her late mother. In 1994 Kerry’s mother had a hysterectomy and was given 2 units of blood via a blood transfusion to aid her recovery. Not long after this Kerry’s mother became jaundiced and blood tests revealed that she had been infected with hepatitis C. Kerry’s mother was told she had contracted hepatitis C in 1995 but it was not until 1998 that it was explained to her that she had contracted the virus from a screened blood transfusion. Although the blood had been screened, the donor tested positive for hepatitis C.
In 1997 Kerry’s mother learnt that she had cirrhosis of the liver caused by the hepatitis C. She then began treatment for the hepatitis in 1998. The main side effect she experienced was depression, for which she was not offered any counselling or psychological support. In 2011 it was found that Kerry’s mother had chronic liver disease and the following year she underwent a liver transplant. Unfortunately, her health continued to deteriorate until she passed away in September 2018.
Kerry explained to the Inquiry how she had applied on her mother’s behalf for financial support to ease her mother’s burden over the years. Applications made to the Skipton Fund were refused as her mother had contracted hepatitis after the 1991 cut-off date. She later wrote to her mother’s MP, but it was once more made clear that her mother was not eligible for financial support for the same reasoning. Kerry shared that the death of her mother had a massive impact on her and her entire family, noting that she believes her father’s ill health has been accelerated by her mother’s death. Kerry said that she now has completely lost trust in doctors and hospitals because of what happened to her mother.