Carole Anne Grayson, a Jesmond resident, has campaigned for over three decades for an inquiry into the infected blood scandal which killed over 3,000 people, including her husband, Peter. The long-awaited report summarising the inquiry’s findings is expected to be released sometime in March of this year.

Grayson lost her husband, Peter, in 2005, who was infected with HIV, Hepatitis B, Hepatitis C and Hepatitis G, during treatment for his haemophilia. While in boarding school in Hampshire, at Lord Mayor Treloar, Peter received treatment “three times a week”, Grayson told JesmondLocal.

Initially, the treatment that had been given to haemophiliacs, Fresh Frozen Plasma (FFP) was sourced from only one or two donors and was therefore low risk, however Grayson told JesmondLocal that the new treatment named Factor 8 “pooled together the plasma of up to 40,000 American donors, from the highest risk sources.” In a BBC article, it was reported that “much of the human blood plasma used to make it [Factor 8] came from donors such as prison inmates and drug-users, who sold their blood.”

Grayson and her husband reached out to a medical lawyer around 20 years ago to try and set up cases against the U.S Pharmaceutical companies that sold infected Factor 8 blood products to the UK. Some of the companies listed by Factor 8 that are alleged to have sold infected blood products to the UK include Armour/Revlon, Baxter/Travenol/Hyland, and Blood Products Laboratory, and Immuno.

Grayson said “we managed to trace his treatment batch numbers…right back to the prisons through our American lawyers. We knew for example that Pete had infected batches where the plasma was taken from prisoners in Arkansas. We even knew the names of some prisoners.”

Grayson, and many other family members and partners of those infected with HIV and/or Hepatitis have spoken in the inquiry, which began in April 2019 and ran until January 2023. Grayson told JesmondLocal “I’ve given evidence at the inquiry in person, and I’ve spent the last four years finding evidence for every single date of inquiry.” It has not only been the past four years that Grayson has been campaigning for this inquiry however, “we were writing letters to the government in the 90s, and we saved all of our replies, so we’ve got a very long trail”.

Grayson was fortunate enough to be able to get her hands on certain pieces of evidence for the inquiry in Newcastle. In 1991 ‘key documents’ were filed into a legal case however were never taken to court. In the 1990s, Carole Anne Grayson discovered that there were copies of the documents in a law firm “just 10 minutes from where I live in Newcastle”. Grayson has since used these documents to write her dissertation while studying for her masters degree in Sunderland, and these documents have now been submitted to the inquiry.

Jason Evans, founder of Factor 8, the UK’s leading campaign organisation for the infected blood scandal, spoke to JesmondLocal about his involvement in the campaign.

“My father died as a result of infections when I was only four years old in 1993, so I was kind of born into the scandal. As I got older, I began to understand a bit more from my mum…I think because it upset my mum so much to speak about it, it kind of forced me to learn about it online and from television programmes”.

It was in 2015, when Evans was in his mid-20s, that he decided to take a more active role in campaigning. He set up Factor 8 with the only goal in mind being to try and get a public inquiry. Evans said, “eventually through a mixture of campaigning, political stuff, legal actions, and journalistic adventures, we managed to get the inquiry.”

Evans has attended “virtually every hearing over the years, since the opening year in 2018.”

In 2020, Evans went with a group of roughly 30 people to a meeting at the Cabinet Office with the then Paymaster General Oliver Dowden, Nadine Dorries and Sue Gray. “We put forward that the Government should begin working with us on a framework for compensation.”

In 2020, the Paymaster General changed from Oliver Dowden to Penny Mordaunt. Evans said, “In March 2021 [she] finally accepted the proposal and announced that a compensation framework exercise would take place”. Evans believes it is because of the change of Paymaster General from Oliver Dowden to Penny Mordaunt that the public inquiry is taking place.

A government spokesperson told JesmondLocal via email that: “This was an appalling tragedy, and our thoughts remain with all those affected. We are clear that justice needs to be delivered for the victims and have already accepted the moral case for compensation.

The spokesperson added: “The report covers a set of extremely complex issues – and the Government intends to respond in full to Sir Brian’s recommendations for wider compensation following the publication of the Inquiry’s final report in March 2024.”

In a letter from Penny Mordaunt addressed to Rishi Sunak on 13 July 2020, when Sunak was Chancellor, Mordaunt wrote, “This is by far the largest UK public inquiry in terms of numbers of core participants, and is one of the biggest treatment disasters in NHS history.” Later in the letter, Mordaunt stresses that compensation will be inevitable.

“I fully expect the Inquiry Chair, Sir Brian Langstaff, to make recommendations about levels of financial support, and I believe it to be inevitable that the Government will need to provide substantial compensation.”

In October 2023, the Government did make interim payments of £100,000, however Evans explains that “the downside was only a third of the victims that had died were in a relationship at the time of death, which left two thirds of bereaved families intelligible for interim compensation”. As written on The Haemophilia Society website, those who were not eligible for the interim payment included “anyone who was infected but has now died, bereaved parents, bereaved children, bereaved siblings and unpaid carers.”

In December 2023, MPs backed the move to speed up compensation for victims of the scandal,  and passed a vote in the House of Commons, which put into the Victims and Prisoners Bill that the Government should send a compensation body within three months of the act being passed. Evans told Jesmond Local “we won that vote, it is now in the House of Lords, and the Committee stage in the House of Lord’s begins on the 24th of this month [January].”

Evans revealed to JesmondLocal that on 17th January the date of the inquiry decision will be announced, with Evans suspecting that it will be sometime in March before Parliament goes on recess. When asked how much compensation the victims of the scandal could expect to receive, Evans said “it’s just impossible to know.”

With the inquiry results to be released within the next couple months, Carole Anne Grayson said that the main outcome that she wants from the inquiry, “above the money because we know we’re getting compensation anyway, is a truthful narrative. That the timelines are correct. It is so important to us that it is recorded when we first presented evidence to government.”