28 September 2022: Panel of Hepatitis B infectees - B

The witness underwent chemotherapy for three years. During that time, she was told she had Hepatitis B. She was told this in hospital in a single room and was just left with the information, alone and frightened. She was later told she did not need to continue with monitoring, but not told why. Some time later a doctor noted blotches on her face and put it down to a badly damaged liver. The assessment in hospital for that was in a mixed ward which was horrendous, with alcoholics and others who were difficult to be around. It was determined she needed a transplant, and this was successful. It changed her life, she said. After the transplant the witness was given anti-viral treatment for HBV. This was later changed to a different treatment, but it had to stop due to the impact it was having on her kidneys. More cancer issues arose, including tongue cancer. There was never any discussion about any connection with the HBV infection. Medical records were discovered to be not complete, which she thought was strange due to the six-monthly tests.

The third witness had a heart operation involving blood being transfused. Some time later a letter was received advising the witness she had contracted HBV. She was referred to the appropriate clinic, but the information given did not really mean much to her. Initially, she was told it was not affecting her liver. The impression given was that she could “live with it”. Later there were cists discovered on her liver. There were other emerging health problems such as tiredness, unexplained bruising, breathlessness, (yes, the usual suspects). She was told it was just because she was getting older. As the symptoms got worse the witness saw several consultants but nothing could be found to explain it. Of course, the elephant in the room was the potential link to the original HBV infection. She has spent her life worrying about possibly having infected others since she went undiagnosed (or not told) for so long. She feels that people were/are not telling or not explained what her health issues meant, other than there was nothing to worry about. In time, the witness has tried to track the course of her HBV infection and the possibility of it causing any of the problems. Upon obtaining her medical records, she noticed errors in what was recorded. She still has many questions about her infection, how it happened, and what it has done to her.

Counsel then began the panel discussion. Asked about any conversations with doctors about possible connections between HBV and the various health problems, the responses included not being told anything, being told that a liver scan should not have been done, and that there was an assumption of drug misuse. Being described as a “leper” was discussed. One person takes sticking plasters everywhere in case a cut or graze might infect someone else. Psychological support would have been very helpful. People get asked about why they are not moving on (e.g. with relationships), or told they were “lucky”, or seeing news programmes and noticing again and again how there is never a mention of Hep B. The sense is that NHS staff think it was someone else’s job to notice a problem and do a test. In the meantime, people are not supported but just left with their worries and ignorance of what has happened to them and what will happen to them. Obtaining insurance has been a continuing problem for all of the Panel members. They have been excluded from the financial support schemes while still suffering all the viral hepatitis symptoms so there have been continuous financial impacts, too.

The Chair wondered if it was possible that the minimisation of the ill-health symptoms was influenced by the fact of those appearing being women, since the off-hand comments are about typical women’s problems. The witnesses had not really thought about it that way but agreed the link was there.

The witnesses final comments included feeling “dirty” and being at the bottom of the pile, even within the infected blood sphere. Hep B never gets to be discussed. The same sense as expressed by other infected people was re-stated that someone should be made to answer and apologise for what happened to them. Gratitude was expressed to the Inquiry for giving them a chance to speak up. Just by way of an illustration, there was an example given of a relative who was found to have HCV and due to the support available appears to be doing better with that terrible enough infection compared to the HBV infected relative. HBV still impacts people in very serious ways.

The Chair thanks the participants in the Panel for coming to give evidence and for being willing to speak about these difficult issues. It was important that peoples’ voices are heard.

(A final Panel member was not able to appear until the afternoon, so there was an extended lunch break until that time.)