They made choices – it wasn’t an accident
CAMPAIGNER GIVES EVIDENCE AT INFECTED BLOOD SCANDAL INQUIRY
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 last week.
Carol, from Jesmond, 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 focusing on her fight for answers and compensation over 30-plus years.
The 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 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. She 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 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 haemophiliacs. 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.”
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.”