27 September 2022: Panel on "natural clearers" still facing ill-health - B

The Panel moved into discussion mode. On the question of the information provided about HCV, the collective view was that it was insufficient. There was no detailed discussion, no printed material, and no opportunity to be supported with the new knowledge of infection diagnosis or clearance. They were just meant to be happy that they had “cleared” the virus. The way they were told about having cleared the virus was generally in a brief informal chat with no scope for discussing what it actually meant. The idea of being the “lucky one” was clearly problematic. It minimised the impacts of when they were infected and minimised the remaining health consequences. Even those with a bleeding disorder mentioned how it was never brought up in subsequent regular monitoring meetings at the Haemophilia Centres. There was no clarity around any ongoing monitoring in case the virus reactivated. The witness with the medical background would ask questions but the clinicians had no answers. The treatment options were never really explored.

Counsel asked about experiences of ongoing monitoring. There seemed to be no opportunity for this in a consistent way. One thought blood tests might be happening during regular reviews but did not know for sure (but would ask next time). Another felt that the doctors did not see it as necessary to do further fibro-scans, ultrasound scans and blood tests. On pressing for these, some clinicians considered that others should be followed up on since they might have fallen through the net. Generally, it appears that once the virus is “undetectable” according to the sensitivity of the test, a patient is classed as ”cured” and so can be removed from any further clinical monitoring. One person was contacted for research purposes after 10 years of nothing, but that went quiet and no contact followed.

The value of support organisations was stressed. Even within families, people generally do not talk about these things. The charities and support groups are invaluable. People are still not revealing what happened to them, even to close friends. The sense is that the NHS has abandoned them, particularly in relation to HCV. The sense is also that nobody wants to talk about the issue. It is a taboo subject. Those who clear the virus are made to feel like they should see themselves as the fortunate ones.

Insurance has been a major problem. People were either refused, simply for having had a test for HCV, or the premiums are excessive and there are restrictions to what is covered. Insurance forms just ask the “yes/no” question and there is no chance to give an explanation. The sense is that they assume you are a high-risk drug user and there is nothing a person can do to counter that view. Some people have just given up trying to get insurance. The example was given for holiday insurance where the premium for the one previously infected can be ten times more than the cost for the rest of the family.

The experiences with the Skipton Fund and other financial support providers have been very poor. People feel they are victimised for being a victim. The NHS has made things worse, not better. It is so unfair to be refused for support that became necessary due to actions by the NHS, but then that support is withheld because the same NHS lost the patient records. It is fundamentally unfair, but nobody seems to be listening. The appeal process was useless. The one on the Panel who had received financial support – eventually – felt guilty that the others have not been supported. He had to be reassured by those others.

The Chair asked how people felt about coming to give evidence. Coming to speak at the Inquiry might cause them to review the past bad experiences but speaking out was welcomed. It was a chance to speak about what happened to them and their families, as well as for those who have no voice. There is still a great deal of “wrongness” and unfairness, including with respect to the support schemes.

The witnesses made final comments. They expressed thanks for the way the Inquiry had supported them and given them a chance to say their truth. They were grateful to those they had met who were also infected and affected people. Having “cleared” the virus has left them still with a lot to live with. It has taken away so much of what people had planned for themselves and their families. This information had to be heard.

The Chair thanked the Panel members of their coming along to give evidence. He said they had given voice for themselves and others, the community they are now part of. He appreciated their appearance, despite the daunting prospect of speaking in front of others.