Ruth Spellman, a mother of three, gave evidence about her late husband Bill who was infected with hepatitis C after being given contaminated blood during treatment for acute myeloid leukaemia.
Bill was a scientist, so he was concerned about the risk of transmission. He underwent clinical trials which made him constantly tired. He also lost his eyesight, suffered sore skin patches and serious mobility issues. Bill was forced to give up his role as head of a school science department and work part time while Ruth began working full time.
Bill worked up until four weeks before he died. Ruth described that in 2008 Bill had to see a podiatrist as he had lost sensation in his feet and this led to him walking with a watch in his shoe for two weeks which resulted in necrosis.
Ruth described the multi disciplinary meetings that took place between the health care professionals involved with Bill’s treatment, where they discussed whether or not Bill was a candidate for a liver transplant. She felt completely excluded, saying that it was like being ‘in a parallel universe’ and that she felt that hers and Bill’s presence was incidental to the process.
Bill died aged 65 in 2009. Ruth told the Inquiry how her biggest regret is that Bill didn’t walk down the aisle with his two daughters, that he would not be at his son’s wedding and that he and never met his grandson.
Adrian was born with severe haemophilia A and after suffering bullying in his mainstream school because of his condition, Adrian was moved to Lord Mayor Treloars School and College in Hampshire.
Adrian told the Inquiry how in the 1980s, the doctor at the hospital chose 50 boys, including himself, to take part in a clinical trial of American blood products. Adrian recalls the nurse being nervous upon administering it.
Soon after this a number of boys given the American blood product started becoming unwell and dying. Adrian found out that he had been infected with HIV in 1989 along with a few other boys. He described how the doctor pointed at each of the boys to identify to them who had HIV and who didn’t.
Adrian described how the children were also provided with gifts from pharmaceutical companies such as backpacks, stationery and watches and told the Inquiry how when he looks back, he feels that the children were being ‘groomed’.
They were told not to tell anyone about their infection, especially the media who would question them outside the school gate. He recalls how some of the staff at his school were openly discriminatory towards him and the other boys who were infected. He described feeling ‘infectious and infected’.
Adrian had a promising career in the music industry as a tour manager but his HIV infection meant that he was prohibited from travelling abroad to work, causing him to miss out on lucrative opportunities.
He told the Inquiry how he often feels guilty for being alive as so many of his schoolmates have died.
Su spoke about her late husband Steve who was a mild haemophiliac. Steve was reluctant to undergo treatment for his haemophilia as he had heard rumours about the blood being infected with hepatitis. He was eventually treated for the first time with Factor VIII in 1976 when it was described as a ‘wonder drug’.
It was not until 1993, when they were living and working in France that it was discovered that Steve had hepatitis C. Su described how Steve lost his concentration and intellectual sharpness and was subsequently forced to give up his post graduate studies. His infection also impaired their hopes of having a family. They were removed from an IVF program after Steve’s hepatitis C infection was discovered.
Steve felt diminished at being deprived of a normal family life and financial security. He attempted suicide by driving into a tree. Before his death in December 2018, Steve endured cancer of the liver, portal hypertension and a pulmonary embolism on his lung.
Su describes her frustration with the English Infected Blood Support scheme after Steve’s death and their lack of compassion towards her emotional and financial situation. Su concluded her evidence by displaying a short video clip of Steve saying what he would like to see come from the Inquiry.