Alan Burgess and Sarah Adams
Alan gave his evidence supported by his daughter Sarah Adams. Alan was diagnosed with haemophilia A in about 1967 when he had his tonsils removed. In 1976 Alan suffered a bleed to his left calf as a result of a football injury and was given Factor VIII. Alan was co-infected with HIV and hepatitis C as a result of treatment with contaminated Factor VIII concentrate.
In 1985 Alan was tested for the AIDS virus and told there was nothing to worry about. However, in September 1985 he received a letter informing him that he had contracted the AIDS virus. Alan felt the way in which this news was broken to him was wholly inappropriate and thoughtless. He felt he should have been told personally and not by letter. He was told by the doctor to “keep quiet” about his diagnosis and was actually told off by a doctor at Addenbrooks Hospital for wasting her time when he made an appointment to see her to discuss this devastating news. No information was given to him about the risks of infecting others even though he was considered a “high risk patient”. Fortunately, his wife tested negative.
Alan told the Inquiry about the terrible strain his illness had put on him and his family psychologically and emotionally. He told the Inquiry of the financial hardship his family suffered as a result of him having to give up his business as a painter and decorator because he could not cope with his illness and work. His mental health suffered as a result of the strain. Alan explained to the Inquiry the jealousy and stigma of neighbours when he received money from the HIV litigation. They vandalised his home and his mobility car and eventually forced him to move house.
Sarah also spoke to the Inquiry about her experiences of bullying at school. She explained how rumours of her father being a drug dealer were spread around because of the money they had received from the HIV litigation and how difficult it was to accept free dinners so often went without food at school. Sarah also spoke about her personal struggle with her mental health as a result of her father’s illness. On occasions over the years he had threatened to take his life and the strain of this took its toll. No psychiatric counselling was offered to Alan or Sarah.
Alan explained to the Inquiry that he had been a Trustee of the McFarlane Trust but had resigned in 2012 when Roger Evans took over. He considered the changes that Roger made were unreasonable and not for the benefit of the community. He said that the McFarlane Trust had become an offshoot of the Department of Health. Alan also became a trustee of the Haemophilia Society but resigned. He felt they did not provide enough support for the beneficiaries and he felt they were “too close” with the pharmaceutical companies. Alan became a member of the Birchgrove Trust and felt they gave more appropriate support and information to the community than the Haemophilia Society.
Alan was an active campaigner. He visited Parliament and met with David Cameron. Alan strived for financial dignity for himself and for the community.
Nicola Jones
Nicole shared with the Inquiry that she is a carrier of haemophilia A but not a haemophiliac. She had on occasion required treatment with blood products. She told the Inquiry that on 1980 she was first given Factor VIII product for the first time. Nicola explained that after this she began to have problems with her health such as fatigue and weight issues, but this was put down to psychological issues. She spoke about how she was tested for HIV in the mid 1980s and found to be negative. The issue of the potential of hepatitis C was raised in 1990. Nicole agreed to be tested but there are no records of her having this test.
Nicola’s mother saw information about hepatitis C on TV in 1995 and recognised that Nicola had had all of the symptoms. Nicola inquired about a hepatitis test. It was then confirmed to Nicola that she did have hepatitis C but was told it would not affect her for another 20 years. Nicola further shared how she had seen a positive result for hepatitis G on her medical records in 1995. Even though she saw this document it has not appeared in the records given to the Inquiry.
It was not until 2004 that Nicola discovered she had naturally cleared the virus years earlier in 1998 – information she only found out as she had been attempting to make a claim for financial support through the Skipton Fund. She was rejected as she had cleared the virus. Nicola told the Inquiry of the various issues she had with the Skipton Fund as they have continuously denied her any money for being infected with hepatitis C as she cleared the virus. She was denied this despite letters from doctors stating that the hepatitis C had elevated her auto immune antibodies.
Nicola discovered in 2013 that her haemophiliac son had been tested for hepatitis C and HIV and her daughter, a carrier, had also been tested since birth without her consent. As neither child had ever had blood products Nicola stated she does not understand why they would need to be tested. Nicola shared that because of her personal experience she lacks trust in medical professionals and finds it difficult to have to keep going back for her treatment and the treatment her children require.
Stuart Gregg
Stu spoke to the inquiry about his experience of receiving contaminated blood products for treatment of his severe Haemophilia A. Stu shared that he had been treated with cryoprecipitate until 1980 when he was switched to Factor VIII product. Stu recalled that his mother was told this was a safer product and the issue of viral safety never mentioned. Stu shared that his health first suffered significantly when he contracted TB in 1981 and had to undertake an 18-month course of treatment. Stu later tested positive for HIV in 1984 and Hepatitis B in 1985. Stu shared that he and his mother were never explicitly told about his diagnosis, it just became apparent over time because of the news and the fate of other haemophiliacs.
Stu shared how his HIV diagnosis meant he was always surprised to reach milestones like 16, 18 or 21. Stu said that is was not until 1998 that he felt he became empowered and knowledgeable about his HIV status, enabling him to make more informed choices about treatment. Stu admitted that he was unsure when he became aware that he also had hepatitis C. Compared to his HIV status it did not seem significant to him at the time. Stu told the Inquiry of the treatment he had for hepatitis C in 2010 and 2011 and the terrible impact this had on him, notably how it took his mental strength and gave him chemical depression. Stu said that since this treatment he has never been the same person again.
Stu spoke of how his parents were pressured into signing a waiver for the HIV litigation when he was a child and how he and his wife were given no financial aid for the IVF treatment they had to go through. Stu shared that as a person under 18 at the time he received little in payment compared to others from the MacFarlane Trust purely because of age. He further explained how he later became trustee for the Macfarlane trust for a couple of years. His views on the trust were that it was not funded correctly, and it was poorly resourced. Once he left the trust, he found it became even worse and he eventually distanced himself completely from the Trust.
Mrs AQ
The final witness of the day was Mrs AQ who spoke to the Inquiry about her late father. Mrs AQ shared that her father was perfectly healthy until she was 11 years old in 1971 when he was admitted to hospital with a blood clot in his leg and given a transfusion. Following this he became unwell and jaundice. On investigation it was discovered he had liver cirrhosis and was diagnosed with having serum hepatitis (later known as Hepatitis B) as a result of contaminated blood. Mrs AQ said that in in 1973 her father was prescribed a steroid which appeared to stabilize his condition until 1981 when a Doctor decided that the steroid treatment should be stopped. The reasoning behind this was that if he were treated with the steroids for more than 10 years, there would be side effects.
Mrs AQ told the Inquiry that her father’s health began to deteriorate rapidly. In June 1982 he had a liver scan but was told there was nothing seriously wrong. Mrs AQ described how her father felt so unwell he was unsure whether he would be able to manage on the day of her wedding in 1982. Mrs AQ shared that four days after her wedding her father collapsed. When he was taken to hospital it was suggested that there was a possibility of cancer. Just weeks later her father passed away.
Mrs AQ described the impact her father’s passing had upon her and her mother. She shared that her mother has struggled with her mental health after losing her husband at such a young age.