Tony, the first witness of the day, spoke to the Inquiry about his late father Barry who passed away as a result of contaminated blood products. Barry and his two brothers had haemophilia A, and all passed away as a result of contaminated blood products. Tony explained that Barry was given cryoprecipitate until 1977 when he apparently developed and inhibitor and started to be treated with Factor VIII products. Tony shared that he has learnt from medical records his father was found to be HIV positive in 1984 and told of his diagnosis in 1985. It was also around this time that he was found to have hepatitis C.
Tony told the Inquiry how his father’s health deteriorated physically and mentally and due to his poor mental state, caused by learning of his HIV status, his father had to be admitted to a psychiatric ward for treatment. Barry spent 1986 in and out of hospital until he passed away in 1986. Tony spoke about the impact his father’s health had upon him as a child. Tony shared that due to tension in the family home he had not lived with his father since 1984 and he was living in a children’s home in 1985 when his father came to visit him and told him of his HIV. Tony said that the children’s home was very supportive, but he did not receive any counselling or specific support to help him cope when his father died.
Tony said that his whole family imploded after his father’s death and although he has built a life for himself, he still has to cope with what has happened to his family. Tony spoke about how he started to look into the Tainted Blood group in 2008 and in 2010 applied for his father’s medical records. Tony shared that reading through these medical records and learning about what his father suffered impacted upon his own health. Tony also spoke about the problems he has experienced in seeking financial support from the MacFarlane Trust. He believes that the children of those infected were overlooked and let down by the Trusts.
Tony ended his statement by noting that he is pleased the inquiry has happened but feels that the victims are at a disadvantage in terms of funding for the investigation that needs to be done compared to pharmaceutical companies. At this point Sir Brian reassured Tony that as far as money is concerned, although there is an obligation to safeguard the public purse generally, he will not spare the pennies in terms of funding. Tony also noted all the Ministers over the years who have said that they do not think there is a need for a Public Inquiry, Tony sated that these ministers have denied the victims the truth and they were all wrong.
David, the brother of the first witness, shared with the Inquiry his perspective of the tragic impact contaminated blood had on his family. David’s earliest memories of his father being unwell were in the late 1970’s and it was in 1985 that his father told him he had HIV. He described to the Inquiry the bullying he received at school due to his father’s illness and how it got even worse after his father died. David further described the events leading up to his father having to be sectioned under the Mental Health Act.
David last saw his father two weeks before he died. He told the Inquiry that the family became fragmented after his death. David spoke about his experience in of going into care after his father passed. He shared that there was a lack of counselling offered and that until 2005 he tried to get on with life and not think about his Dad. David shared that although he was aware of the impact of contaminated blood on his immediate family, it was not until the late 1990’s that he became aware of the vast scale of the scandal.
David told the Inquiry how devastating the infected blood has been to his family. He shared that his Uncle Vickie learnt he was HIV positive just weeks after David’s father died and he too suffered terribly until his death. David also spoke about losing his Uncle Dave who died in 2012 from hepatitis C and was almost like a Dad to him too. David also shared his experience with the MacFarlane Trust and that from his experience as an older child at the time of his father’s death he received almost nothing.
Ros and her mother Juliet spoke to the Inquiry about the impact contaminated blood has had on their lives. Juliet and her husband adopted Ros as a baby and in 1975 when Ros was 8 months old, she was diagnosed with Von Willebrand’s disease. Juliet spoke about the book she wrote about Ros, feeling very strongly that the stories of girls with bleeding disorders are not sufficiently heard or understood. Ros and Juliet spoke about the treatment Ros received, she mainly had cryoprecipitate until it was changed to Factor products in 1987. Neither could recall much discussion being had with them about the change of treatment apart from it being said that Factor products would be more convenient.
Ros shared that she was first told she had Hepatitis C after she had a surgery in 1992 and a doctor mentioned it to her after the operation. Ros said she believes doctors may have known she had hepatitis prior to when she was told about it in 1992 because the way she was told about it seemed as though they assumed that she was already aware. Ros spoke about the impact having hepatitis C has had on her life. She had always wanted to have children but has had fertility issues that were worsened by the treatment she had for hepatitis. She described in detail the side effects she experienced from the treatments she has had to clear the virus over the years, noting particularly the depression and psychological impact.
Juliet sought counselling and support because of the mental and emotional impact this has had on her. Juliet said that for her, most shocking is that when the Government knew the facts about contaminated blood, they did not act promptly to help the victims. She said she feels that successive Governments have also failed to help. Ros added that she urges the Inquiry to make a recommendation to help the victims by offering psychological support. She said she believes it is vital; something that needs to be in place and be comprehensive.
Mrs AO shared with the Inquiry how her husband passed away as a result of contaminated blood products. Mrs AO married her husband in 1974 and the couple had two children. However, in 1980 her husband was diagnosed with leukaemia. As treatment he had a bone marrow transplant in 1982 and was regularly given platelets. The surgery was successful in eradicating the cancer, but he came down with various infections and his health continued to deteriorate until he passed away in 1983. Mrs AO told the Inquiry that 9 years after her husband’s death she received a letter out of the blue and went to a hospital meeting with Professor Goldman when she learnt that her husband had been infected with HIV.
It was confirmed to Mrs AO by Professor Goldman that the HIV had been a cause of or at least contributed to his death and that he had been infected by the platelets for his Leukaemia treatment. Mrs AO was also given a study that was published in a medical journal in 1987 which she was told related to her husband. The study showed that after her husband’s death, samples had been tested concluding that he had had HIV. The study looked into how the HIV had affected the patient. Clearly this investigation had occurred prior to the publication of the journal in 1987, yet Mrs AO was not told until 1992.
Mrs AO told the Inquiry that she is frustrated that her husband died unnecessarily. The bone marrow transplant was successful in curing the cancer so she believes he would have had a good chance of survival if he had not been infected. Mrs AO spoke about the impact her husband’s death had on her family initially, and how it impacted upon the family again nine years later when she found out the truth. Mrs AO said that because of the stigma she does not tell people about the HIV apart from close family, and she only told her children when they reached adulthood.
The final witness of the day was Mrs AP who spoke to the Inquiry about her experience of being infected with Hepatitis C from contaminated blood products. She explained the various treatments she has had over the years for her rare bleeding disorder including Factor VIII products in 1980. She was eventually diagnosed with Rosenthal’s Syndrome or haemophilia C, a rare clotting disorder.
Mrs AP shared that by 1987 she was married and wanted to start a family. She had fertility problems and had multiple rounds of unsuccessful IVF treatments. Mrs AP said that on one occasion of IVF treatment he was told by a junior doctor she should be tested for infections as she has been treated with various blood products over the years. She was tested and then told at a routine appointment in 1995 she had hepatitis C.
She shared the impact this diagnosis had on her life, noting the treatment of Pegylated Interferon and Ribavirin she was on for a year which cleared the virus but was described as ‘absolute hell’. She described the horrific side effects and how she was so unwell she had to scale back work and eventually retire at 57 which she directly attributes to the hepatitis C. She also spoke about the impact on her family life; she and her husband were able to adopt two young children but the treatment and ill health as a result meant that she struggled practically to care for two babies.