30 September 2022: Panel from minority ethnic communities - A

The fifth Panel was made up of members who were representative of infected and affected people from minority ethnic communities. The viruses seem to make no differentiation over who and how people were infected, so the prospect of gaining a greater understanding of the unique aspects of viral infection and care in relation to this distinct dimensional cohort of the collective making up the Contaminated Blood community was welcome.

The first witness was a British Kenyan woman who has lived in the UK since 1972. Her third child was born in the UK and she lost a lot of blood during the birth. She had never needed blood when her first two children were born. She was given a blood transfusion of two pints. Over the years after the birth of her third child she suffered progressive back pain but was otherwise well. In 1994 she gave blood and then received a letter saying she could not donate due to being jaundiced. She went to the hospital but was told she was alright. (The witness became quite emotional at this point, but was happy to continue.) Another letter came out saying she had been infected by Hepatitis C (HCV). There was a plan to carry out a liver biopsy, but she refused after it was described what it entailed. After a series of monitoring blood tests, she was told her liver was not damaged and that somehow she was “clear” of HCV. A new GP carried out a test which confirmed she still was infected. This annoyed the witness since she was told she was clear and had been living her life that way. It made her feel dirty. It was also discovered her liver was affected and required treatment with Maveret(?), a bespoke drug for her. The side effects were very severe. It caused stomach bloating, cramps in her feet, and she was physically sick with blood involved. The treatment did clear the virus. However, the witness continues to struggle with her physical and mental health. She has had no counselling and was scared to say too much in case they gave her more medication. She had previously been prescribed tranquilisers and it was not a good experience. Her body aches with pain that is almost unbearable. Her sleep is badly affected. Her feet are painful, like fire. One particular doctor was very dismissive so much so that she refused to ever be treated by that doctor again. On advice, she applied to the English Infected Blood Support Scheme (EIBSS). The application was rejected. A Dr Wright gave an explanation based on the witnesses’ Genotype 4 designation being mostly an African Genotype. There were no medical records to allow the witness to challenge this decision or the asserted assumption it was based on.

The second witness was born in Pakistan. He came to the UK in the early 1970s. He underwent a few small operations (bladder stone removal) in Pakistan which did not involve any blood transfusions. Later in the UK the same operation was required, in 1984, and blood was required this time. Yet another bladder stone issue arose and again the surgery was successful. From about 1994 his health began to deteriorate. His legs and feet would swell up at night. Tests revealed very high liver enzyme levels. He was getting further difficult symptoms and eventually he had a stroke. Since then, he was having more health issues such as uncontrollable shivering and high temperatures. He was referred to a liver specialist. His wife happened to notice on his medical notes that he was HCV positive. Nobody had told the witness about this. (At this point the witness was struggling to maintain his composure.) The treating doctors said he had to be kept separated from his family, which consisted of three children and his wife. This was said to be necessary to avoid passing on the virus. It affected his family life and his friendships. His wife did not want him to see or be near the children. She herself was unwell as a result of being pregnant. It was very hard not to be able to be a father in the normal way to his children. A close family member shut him out due to making the link between HCV and HIV. People just stopped seeing him. At the time he was running his own business, but due to his worsening health his business failed. It was decided he could not be treated with anti-viral therapy due to his poor health. Eventually, he was started on a course of Interferon. It went on for 10 months and was very difficult. Sadly, it didn’t work. A while later he was put on a course of Interferon and Ribavirin. The witness says he was never actually told that he was cleared of the virus. He was told he was getting better, and the treatment was stopped. He has remained unwell, in part due to the stroke. A later biopsy revealed liver disease. He was told about the Skipton Fund. He had been well supported by his step-sister who worked hard for him to collect his medical records. When these were received there was no record of a blood transfusion. There were also no GP records either. The Skipton Fund was declined “due to the lack of supporting medical records” – the standard response.

The third witness had attended the Inquiry to speak about her mum. The mum was born in Pakistan. She had started her own family in Pakistan before the family resettled in England where other children were born. On a trip back to Pakistan the witnesses’ father died. The family remained there until she developed a heart problem whereupon the now single-parent family returned to the UK. After a heart attack it was revealed the mum had been infected with HCV. This was not known to the family. They didn’t even know a test had been done. There was at least a two year gap between the first HCV test they come to know about and the family finding out (by accident) about the HCV infection. Anti-viral treatment (Interferon and Ribavirin) went on for 7 weeks but was stopped due to a negative effect on the mum’s already vulnerable heart. Some time later the mum was told she had cirrhosis of the liver. The combination treatment was started again. It was very hard on her. She had been a very active person, independent, and able to do everything for herself. She was becoming more and more dependent on her children, not least for interpretation when being involved with the health services. The treatment was stopped at 43 weeks because the doctor who phoned the family home said it would be fatal for her mum if it continued. The virus had not been cleared. The witness did not understand what was happening to her mum (… whereupon she became very emotional and was offered a break). She wondered if she had done something wrong in assisting her mum in the treatment. She also worried she was going to lose her mum. The next step was that the mum was offered a liver transplant. That was also not a straightforward process but required more consultations. The multidisciplinary team decided she was not well enough to have the transplant. They worried that the mum would not wake up from the general anaesthetic. By 2009 it appeared the mum’s health had significantly improved. It appeared that the liver was better than it had been. In 2016 there was the option of the Direct Acting Antiviral (DAA) treatment. Initially the mum was minded to refuse due to the terrible side effects of the previous treatments. The cost was cited as between £30,000 and £40,000 to complete. After encouragement by the family, she eventually agreed to take it. This time it worked. In 2018 it was discovered there was a pea-sized cancer on the mum’s liver. The suggestion was that it would be 5 years until her health would deteriorate to any significant degree, but quite quickly things got bad. She had developed encephalopathy, and this had a challenging effect of her mental health such as being very forgetful to the extent of being a danger to herself and others. Another scan to check a possible bowel problem revealed that the cancer had spread, including to her lungs. The doctor very coldly told the witness that her mum might have maybe three days to live. The witness was alone when she was told. Her mum was asleep in the hospital bed. She immediately called family members to come to the hospital. (At this point the emotion of the experience was overwhelming for the witness and a short break was called.)

Counsel resumed by reading directly from the witnesses’ statement. The family was told their mum would not leave the hospital alive. Questions were asked because the family felt that something was not right. They managed to convince the hospital to let their mum come home. She initially refused to use the hospital bed which was sent back with her. The family gathered, including from Pakistan. The mum was not told of her terminal condition, thinking she was just recovering from a bowel blockage, but the witness supposed her mum had worked it out. Her mum died in 2019, happy with her family around her. An application had been made to the Skipton Fund. The part completed by the doctor was inaccurate, noting pregnancy in the UK in the 1960s, despite her mum not being in the UK until long after that. There had been difficulties obtaining records. They even tried the West Yorkshire Archive as a resource. There were no records their either, but the response did illustrate an interesting piece of information about records being held in those types of places for longer than they were thought to be normally held by the NHS in hospitals. An appeal was unsuccessful. The family felt that the Skipton Fund did not give proper consideration to the application and were basically calling her mum a liar by assuming that despite what she said she must have been infected in Pakistan.