7 October 2022: Panel of recently HCV diagnosed people - A

The seventh and (almost certainly) final Panel consisted of people who have been diagnosed with Hepatitis C (HCV) more recently. Of the four witnesses, two are to be anonymous. There was a brief delay to the start of proceedings to allow a late document to be scanned onto the system.

The first witness had an accidental fall at aged around 5 years old. He had significant injuries to his face. A second corrective operation when he was in his early teens required a blood transfusion. Soon after that he began to have health problems. He was jaundiced, with bad stomach and back pains. One doctor came to see him daily for a reason which was not explained. He did recover, but it would be years later when he discovered he had been infected with HCV. There was no link made between the ill health and the earlier blood transfusion. After a period working in the US, he worked for many years in Singapore. Over time his health deteriorated again. Eventually he was forced to go to see a doctor. This led to a referral to a liver specialist where it was discovered he had a fatty liver. He put this down to alcohol consumption. He was offered Interferon-Ribavirin combination therapy, but he did not pursue that option, nor the other test options offered. He basically buried the whole thing. He continued to have illnesses, including significant weight loss and pain. He returned to the UK with his wife during the Covid pandemic. He re-registered with a GP surgery and requested a blood test because he suspected he had HCV. After some difficulties due to NHS personnel changes, he accessed his results online and it looked like he had a high viral load. The Hepatitis C Trust suggested he was probably correct, so should get it checked once and for all, and this led to the diagnosis after so long. He was called at home by a junior doctor and given the positive test result over speakerphone. This was how his wife discovered he was actually infected. Next he tried to begin anti-viral treatment. He eventually got an appointment and that started the series of medical interactions of tests and scans. There were difficulties identifying his genotype due the Covid impacts on the NHS. Eventually, the genotype results were received, and the appropriate Direct Acting Antiviral (DAA) treatment started. This achieved a sustained viral response with the virus being rendered undetectable. He has ongoing health issues, such as not being able to close the fist of one hand (this writer knows all about that). He was told he had a body of a man at least 10 years older. This was difficult for him to hear since he had had a very active lifestyle before that. He now receives physiotherapy for his back, hands, legs, and more. While still in Singapore he applied to the English Infected Blood Support Scheme (EIBSS). He sent a large file of evidence but was asked for more. He queried this and in conversation with EIBSS he was convinced they had not actually looked at the documents he had originally sent. The application was rejected. They said there was no evidence of a blood test during the second operation, and it was assessed that it was not usually required in that type of operation. They assumed that during his 20 years as a police officer in Singapore that would have made him more vulnerable to blood-borne viruses. He had never been a police officer in Singapore. The witness tried to obtain his medical records but was told they had been destroyed. He requested an explanation as to why the application had been rejected. He also sought a copy of the assessment paperwork but was sent his own application back. EIBSS eventually admitted they had made a mistake about the police officer work. After reviewing the application, it was approved. This happened just three days before his appearance at the Inquiry. The Chair asked if EIBSS knew he was due to give evidence to the Inquiry, but the witness thought not. Counsel asked if he had ever received or been offered psychological support. He said he had not.

The second witness had received a blood transfusion after giving birth by Caesarean Section. Due to illnesses some time later, it was discovered from tests she had a fatty liver. That was initially put down to weight and diabetes. Later again she received a letter saying the liver problems were likely due to a diagnosis of HCV. This was a shock to the witness. It made her feel “dirty” due to the associations related to Hepatitis. There was a great deal of support from a nurse specialist who sent her everything she needed and kept in contact by phone. By this stage in her life, she was looking after her poorly husband. She was worried she might have unknowingly infected someone, not just at home, but also through her work with children. During her life with HCV when she didn’t know, she would suffer dizzy spells, brain fog, significant fatigue, itchy skin, thyroid problems, and diabetes (diet controlled). Over the years of being investigated or treated for all these problems there was never a discussion about the earlier blood test or HCV infection. She was given DAA therapy to treat her liver problems and it appeared to work, but any positive effect due to the elimination of HCV had still not been confirmed. Once the three month course was over there was no further contact. A whole year later, this Wednesday (only two days before appearing at the Inquiry), did the witness receive a letter inviting her for another blood test. The witness tried to obtain financial support from EIBSS, but this was refused due to the genotype being unusual for the UK. She then tried to get her medical records. Unfortunately, there was a gap in the records covering (exactly to the day) the period of giving birth to her daughter when the suspected transfusion was given. (At this point the witness had to refer to her daughter who was sitting beside her. The Chair suggested swearing in the daughter to make things easier, and this was done.) A follow-up application to EIBSS was prepared with support from the Hepatitis C Trust and online research to challenge the genotype justification for refusing the first application. A substantial pack of documents was submitted. It included a link to many of her illnesses having a connection to HCV. This was successful. The witness had been angry at the first rejection. It had been a lot of work, but they kept at it. (Who is making these decisions, a witch doctor, a tree surgeon, and a Trappist monk?)

The third witness was anonymous, a former teacher. When due to give birth for the second time she did not want a Caesarean Section, but it became necessary. The procedure did not go well due to complications and errors by the healthcare professionals. She required a general anaesthetic and awoke to a blood transfusion which concerned her. She had lost more blood during the first birth than the second, but it was the second birth where she was given blood. Soon thereafter she became unwell but put it down to a virus probably going round. There then developed a number of issues typical of HCV, but this was not identified as the cause. Her GP eventually said that the fatigue and other problems could not be treated by just trying to “paper over the cracks”. She was put on anti-depressants and has had to receive these on and off for many years. There were other symptoms such as numbness in her toes which spread. This led to a diagnosis of peripheral neuropathy. The witness saw Anita Roddick on TV and recognised similarities, but when she raised it with her doctor the response was very dismissive. She later needed a first and then a second hip replacement. The second surgeon referred her to a haematologist. Blood was taken for tests, but it turned out the wrong tests had been done. Eventually, as things got worse, she had to return her driving licence and her problems got worse still. The witness again raised the issue of HCV but was again dismissed. Later still, there was a need for blood tests for another condition. It led to more tests. She received confirmation that she had HCV. It was 42 years after the blood transfusion. The news made the witness very worried. She thought there was a risk of her infecting people over the years. She saw herself as a “bio-hazard”. She once scratched herself on a bramble thorn and broke the thorn off in case someone else was scratched by it. She was also worried about how it might impact on how she died. By now it was 2018 and there was a referral to the hospital, but unfortunately the referral had gone to the wrong department. Eventually, she did get to the right place, but when she asked about treatment she was told she would probably not be offered it. It was perhaps due to her age. She insisted and felt that since the virus had been given to her by the NHS, she had a right to be offered treatment. Throughout this time, she was being seen by registrars and it took a letter from her GP for her to have access to a consultant. The consultant was very helpful, offered the treatment, and made the connection to the peripheral neuropathy. The DAA treatment was effective and seemed to be beneficial, but it was only a year ago. Over the bulk of her life she had kept her concerns to herself, and even buried them. She has since begun to tell people. Her concern included the fact of having been a local teacher and the possible feeling that she had put children at risk, even though her’s was just a suspicion of HCV. The fatigue did impact on her teaching, and was part of the decision to retire early. Since treatment she had felt better, but not entirely. The witness was successful in an application to EIBSS. There was surprise at the fact her records had not been destroyed, despite the passage of time. (Perhaps it is occasionally helpful if the NHS don’t do something they are supposed to do at the time they are supposed to do it, even if that is only related to the perfunctory task of destroying records according to a schedule.)