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

The fourth witness was also anonymous. He was very ill when he was born and received blood transfusions at the time. He was told he had jaundice among other things back then. As a young adult he had a serious road traffic accident and again received blood. Later on, in the course of seeing his GP, a note was discovered reporting an abnormal liver function test. The note included a suggestion to discuss the patient’s alcohol intake. This apparently significant medical note about a serious health issue was very roughly handwritten, as if it had been a quick scribble before the person forgot, and then did. The witness was never actually spoken to about his liver problems but was sent for annual tests. It was really only his medical records that told him his HCV viral status, not a member of the medical team. An entry in 2019 about the witnesses’ liver was exactly the same wording as one from 2009. (It seemed like this witness was being kept in the dark, even if that was simply down to very poor communications.)

A general panel discussion was entered into by Counsel. The first explored theme was the time it took for the witnesses to be told they had a viral condition. There were comments about how so many medical professionals do not know much about HCV or understand what it meant for their patients, including; how it is transmitted, the effects it has on someone who has it, and the treatment options. Having been diagnosed makes a big difference because before that, every time they went to see a doctor, it was as if they were being seen as lazy or making it all up, or something else. It had certainly reduced their confidence in the medical profession. The witnesses suggested it is still something many doctors do not want to talk about, although nowadays it is as if HCV is something that happened in the past and is now not an issue with which to be bothered.

There were particularly positive reports about specialist nurses, but the NHS generally seemed to suffer from breakdowns in communications, especially internally and with the patient. This included them taking what is entered in a computer file as something not to be questioned. People felt the doctors didn’t want to consider the HCV factor. Health professionals were, and still are, resistant to carrying out tests. People have to justify requesting a test and they wondered if it was a cost issue or something else.

The experiences with financial support schemes were not positive. The issues included: forms being lost (not by the witnesses); always feeling you are having to prove you are not lying just to get money; jumping through too many hoops only to be rejected; and (as if it was a deliberate ploy), predicting that many people would not know what to do with a rejection so would just drop it and therefore save the Government money even though they caused the problem in the first place; the lack of clarity over how applications are assessed; the issue of the NHS being the culpable body yet them destroying records which became the crucial barrier to obtaining support.

The Chair had nothing additional to ask.

The witnesses reinforced the need for raising awareness of Hepatitis C. One person had become involved in the Hepatitis C Trust, in particular by volunteering with the Helpline. The thanks and hopes were that the Inquiry would bring the issues into the light and that would make a difference. There was reference to the apparent reluctance by some in the medical world to allow patients to have access to “their records”. It should not be a fight to get information about yourself. The schemes need to be a help not a hindrance. The Inquiry was again thanked for its work.

The Chair noted how the evidence demonstrated how there is still much to do in awareness-raising. He thanked the witnesses for bringing the matters right up to date. Most of the witnesses had found out about their HCV infections during the course of the Inquiry. The Chair acknowledged how their evidence had highlighted that there might still be matters for him to consider even as the evidence gathering process comes towards the end. He welcomed the suggestions about what they wanted to see from the Inquiry. He also made observations about the challenge of giving evidence which they had overcome, despite the stigma. It showed how much they wanted to help others.

The Chair then took a few moments to make some comments about the stage the Inquiry had reached. He noted the latest milestone being that of the end of the oral evidence hearings (apart from the two days rescheduled due to the funeral of the Queen). Recalling the commitment to have core participants at the start and end of the Inquiry, he said that commitment had been met. There was mention of the particular order in which the evidence was heard. It was reported that during the Inquiry 230 infected and affected people had given oral evidence, and about 3,500 had given written evidence in some form.

The Chair then spoke directly to all those who had contributed evidence, either for themselves or for a loved one. He recognised how each contribution has helped to piece together the jigsaw of what has happened. There had been revelations of information that had never been heard before. He paid tribute to those who had given evidence since it could not have been easy, and he also acknowledged the community of people who have been around one another to provide support and encouragement, including by attending the Inquiry, being there as friendly faces. Sir Brian spoke specifically about the people who had attended the oral hearings. He recalled his desire that every witness should be treated with respect, including those who said things which might be disagreeable to the listeners in attendance. He expressed his thanks for the respect and sometimes the restraint shown.

Finally, he admitted that the challenge he was facing was not an easy one, but it had been made easier by those who had participated in the Inquiry. November would have a focus on possible recommendations on topics such as continuing to identify infected people. For these purposes there were still a number of witnesses to be scheduled, but it was hoped to publish the timetable the following week.