Paul’s story

‘I dearly hope this inquiry will bring us closure’

Despite years of counselling, Paul was unprepared for the emotional impact of the Infected Blood Inquiry. Paul, who has severe haemophilia A, was infected with hepatitis B and C as a result of contaminated blood products.

Paul has also used blood products implicated with HIV, hepatitis A and vCJD. He said: “The inquiry has had a far greater emotional effect on me than I’d ever considered. There have been moments that have made the hairs on my arms stand up because they bring back some quite powerful memories. After having 15 years of pretty intensive counselling I thought I’d put most of it to bed and it wouldn’t affect me, but it has.”

Paul, 53, started counselling in 2003 after experiencing severe depression and suicidal thoughts following completion of his second treatment attempt to clear his hepatitis C using pegylated interferon and ribavirin. He now believes that it is thanks to this counselling, which finished in 2018 that he is able to face up to the inquiry at all.

Paul said: “Until fairly recently I’ve not been ready to admit the need for an inquiry, on a deep personal level. It is part of the coming to terms aspect for me. Although I do find the inquiry emotional, thanks to the counselling I now have coping mechanisms, which help me keep my reactions in perspective.

“I always thought I was at the wrong place at the wrong time and everybody had done their best. It’s only fairly recently I’ve started to read different things, my knowledge has improved and I’ve started to understand things better. I now realise that this inquiry is a necessity.”

Having attended a number of inquiry sessions and followed witness testimonies online he thinks inquiry chair Sir Brian Langstaff and his team have so far struck the right tone. Paul said: “The overall nature and style of the inquiry has been impressive. Whether it is talking to someone about a travel claim or discussing your experiences, everyone listens and is respectful and helpful.

“From the evidence we’ve heard so far, I think Sir Brian has set the right tone and has also covered quite a broad range of experiences. The challenge will be to maintain that fairness and consistency so that people will accept the final outcome and not dismiss it as a whitewash.”

Establishing and acknowledging the truth about the contaminated blood scandal is what Paul hopes can come out of the inquiry, as well as clear care guidelines for the support of those infected. He believes everyone infected and affected should receive the same financial support and security, regardless of where they live in the UK and hopes the inquiry will address this.

Paul said: “Everyone will have their own deeply personal aims for this inquiry. For me, I want to feel as though everybody has now laid their cards on the table and are being open and honest about this and are not trying to hide things.

“I also want to ensure there is consistency in medical support processes and procedures for everyone affected and there is evidence that this is not happening. For example, I haven’t had a liver scan since 1995 and yet others in a similar position have one regularly. Which is right?”

The inquiry is shining a light on people living with haemophilia as well as challenging the idea that hepatitis C is a drug-­users disease, which Paul welcomes.

He said: “Everyone’s experience is unique but this inquiry is showing we are all one affected community. I dearly hope that this inquiry will allow us all to have closure to some degree.”

Paul Sartain is a trustee of the Haemophilia Society. This is his personal view of how the Infected Blood Inquiry is progressing.