Jesmond contaminated blood campaigner Carol Grayson spoke of decades of vital activism and research, the harrowing deaths of loved ones and her fears over "misogynist" compensation at the ongoing Infected Blood Inquiry this week.
Carol, who saw husband Pete Longstaff die an "awful death" due to HIV and hepatitis C caused by infected blood products given to treat his haemophilia, years after his younger brother Stephen had suffered the same fate, gave evidence focussing on her fight for answers and compensation over 30-plus years.
At the end of a traumatic day's evidence, Sir Brian Langstaff - the former High Court judge leading the public inquiry - paid tribute to Carol too, highlighting how she had provided a wealth of documentation about the scandal to the inquiry, and how her dissertation on the topic was "required reading".
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He said: "I'd read your dissertation more than once, in many parts, and, having read it I fully understood why it won a prize, but more importantly I was looking forward with interest to hear what you had to say. And you certainly haven't disappointed."
The ongoing inquiry is seeking to understand the circumstances leading to thousands of haemophiliacs being given blood products tainted with lethal viruses like HIV and hepatitis C on the NHS, along with how those infected and affected were treated over decades.
Carol's husband Peter - and his brother - were both patients at Newcastle's haemophilia centre at the RVI. Along with tens of others, and like haemophiliacs around the country - they both became seriously ill and eventually died because of treatment they were given. In Peter's case, he was also studied as part of a trial at the specialist Lord Mayor Treloar's school in Hampshire, without he or his parents being told of the risks. They were told it would "do nothing but good".
At the Inquiry, Carol highlighted how over decades - and including through collaborating with Journal reporter Louella Houldcroft on the Bad Blood campaign in the early 2000s - she had used her experience as a nurse working in the HIV community and become a prodigious researcher digging up vital documents exposing how top medics and the Government had been warned of the dangers of using blood products derived from large numbers of blood donors and in some cases US prisoners.
Along with other members of the haemophilia community such as Colette Wintle and the late Peter Mossman, Carol and her husband Peter were vocally calling for a public acknowledgement of the wrongs done to them and an inquiry like this one for decades - but generations of politicians denied them before a full inquiry was announced in 2017.
She spoke of how Peter and Stephen's parents Arnold and Alice were subject to huge stigma at their Hartlepool home after Stephen's HIV infection - and death due to this - became known. Carol also said Governments of the day had "made a series of choices" leading to the scandal, which has seen well over 2,000 people die.
She said: "Government made a series of choices and that those choices seriously impacted haemophiliacs. So it wasn't an accident; it was people sitting together in a room and deciding what products people should have, what should be licensed. Those decisions are not looking at donor safety. It's not just about haemophiliac. It's also about donor safety and not looking at these key issues led to people being infected."
Last month a study commissioned by the Cabinet Office and authored by Sir Robert Francis laid out a potential scheme to finally compensate those infected and affected. But Carol has raised concerns that it would - again - exclude acknowledgement of the lost careers of people like herself who sacrificed lives to look after dying loved ones.
She told the Inquiry: "It's still an issue which I'm concerned about and flagging up. With men, it was mentioned that they [the administrators of a compensation framework] would be looking at loss of earnings. When it came to their partners, there was a mention of looking at carer costs, but we were professionals too. We had jobs. We had careers. We had loss of earnings. There could be quite a significant difference between basic carer costs and if you had quite a significant career and the potential to earn quite a lot."
Carol said she had flagged it up with her lawyers, adding: "I would ask Sir Robert Francis to consider that this could be seen as misogynist, especially as some of us were the main wage earners." Inquiry counsel Jenni Richards said she would take this up with Sir Robert when he gives evidence to the Inquiry next week.
Ending her evidence, Carol paid tribute to haemophiliacs, saying: "Our superheroes don't wear capes, they walk with crutches, they negotiate the Tube in built-up shoes. They lock their wheelchairs to railings to protest and they go on treatment strikes." She also reiterated her call for partners of haemophiliacs to receive the interim compensation payment recommended by Sir Robert Francis.
She added: "Partners are not appendages. We are separate in our own right, and I would like to call for the interim payment that has been suggested to be made for everyone. Because infected and affected - a lot of people are now that older generation. And we've waited and waited and there should not be any more division."
The Infected Blood Inquiry continues next week with evidence from Sir Robert Francis and politicians including former Health Secretary Andy Burnham. It is expected to conclude this year and deliver findings in 2023.
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