8 July 2022: Grayson - C

Calls for a Public Inquiry have come from a variety of campaigners over the years, with Carol being one of those with a louder and longer voice. Counsel pursued this aspect of her campaigning with reference to a series of letters to various politicians. She said there had much earlier been a request to hold an Inquiry in relation to the HIV infections. Carol herself began her efforts in this regard beginning in 1994. Carol mentioned how there had never been a risk assessment carried out in the 1970s before factor concentrates were introduced. She mentioned how these were introduced in the 1960s in the US, and very quickly infections came about. Even back then, there were expert calls to delay its release until products were virally inactivated. Interestingly, the drive to get these new products on the shelves was so strong, that once the treatments were approved prior to this safety mechanism being reached, there was a massive reduction in the funding to achieve viral inactivation. That was when the narrative was created about patients being told of the risks (grrr!), and that it was a life-saving measure (ie. the trope that goes, “they would have died without it”, double grrr!). Carol referenced the Nuremberg Code requiring risks at a certain level to always be brought to the attention of potential recipient patients.

The response the witness got to a letter she had sent to Alan Milburn mis-represented her view that she was only looking for an Inquiry focus on Hepatitis C. (Even though the word “Gaslighting” had not been given its modern meaning, but it was obviously going on nonetheless.) Sir Brian sought clarification on the case of mild haemophiliacs which the witness provided, and which highlighted the complete inadequacy and ineptitude of their responses. Carol received a leaked internal document which made it clear there was a specific line to take related to the BSE Inquiry because that line was to avoid it being used to strengthen calls related to the HIV/Hepatitis situation. (At least someone had a conscience bigger than their fear of being caught.)

There was a demonstration in 2001 which called for, firstly a Public Inquiry, secondly financial recompense, and thirdly universal access to recombinant, which was signed off by five campaign groups. There eventually was a meeting with Lord Hunt which seemed productive but did not actually lead to agreeing to hold an Inquiry. In the same era, the same old narrative was continuing to be pushed and expanded through words and phrases like “unwittingly infected”, even though as the Chair pointed out, it clashes with the suggestion that the risks were discussed with patients. How could it be unwitting if risks were known? Overall, the refusals to hold an Inquiry never really got to grips with the issues being raised that ought to have been covered by an Inquiry.

At the time, the Government was relying on their connections with the Haemophilia Society to claim it was listening to patients. Of course, the Haemophilia Society was basing its support and recommendation (for its members for people to use the new treatments) on the expert advice from the same treating clinicians who were telling the Government what they wanted to hear. The series of letters to Ministers, other politicians, and anyone else who might listen continued unabated despite the constant series of negative responses to any Inquiry calls. Carol noted the similarity in the wording of these responses, as if they were simply cutting and pasting from one to the next, to the next. The claim of them only being open to re-considering their refusal if new evidence was brought forth simply did not acknowledge the plethora of new evidence being presented to them. (Brick wall, prepare to have more heads banged against you.)

These efforts continued year on year with the next stopping point being a letter to Theresa May at the end of her Premiership. Carol and Colette referenced a question to David Cameron from Rory Stewart at the end of Mr Cameron’s PM-ship. The previous PMs fine words even then had not translated into a significant, substantive, and transformational change. They pointed out one great disappointment at how long-standing campaigners such as themselves were continuing to be excluded from significant decisions affecting the community, such as the disbanding of the Macfarlane Trust. The Independent Archer Inquiry was supported to a great extent by Carol and those working with her. Among its recommendations was to initiate a system similar to the Irish scheme. The DH kept refusing this by describing the Irish settlement in terms which were simply not true. The issue of seeking to follow the pattern of the Irish settlement was a theme for Carol because she had been seeking a matching arrangement since 1996 when the Irish scheme began to pay out. The witness had tried to give evidence to the Penrose Inquiry, but her offer was refused. She later discovered through Haemophilia Scotland that some of her evidence had been accessed by the Penrose Inquiry via the Archer Inquiry archive.

From the early 1980s there was reference to an anonymous case of a young haemophiliac boy from New Zealand, who was on holiday in Scotland with his family, when he was treated for the first time in his life with commercial factor product at Yorkhill Children’s Hospital. After much research from the family and then contact with Carol, they were able to obtain the necessary evidence and receive a pay-out for the infection. It was pointed out to the Chair that this would not have been included in any previous listing of Scottish litigation.

Reverting to the time of the meeting with Ann Milton MP involving Carol and Colette, it did achieve some success, such as the affirmed removal of the word “inadvertent” from all future communications. The removal of the idea that “luck” was involved was also a victory. However, despite the apparent convincing of Ann Milton to progress other matters, she was again blocked by the Government. The main point of the meeting had been the issue of potential misogynistic  attitudes within and towards the haemophilia and infected blood world. Carol mentioned a potential continuation of that issue through the Robert Francis Report where carers are given minimal financial consideration, despite many having previously been the main breadwinner and often had to give up much higher paid jobs than that of a basic carer role. It was also mentioned how the whole case related to infected blood had struggled to gain traction towards an Inquiry. The case of the Grenfell Tower fire was cited. It was also a truly horrific and dreadful incident, but the Inquiry came very quickly, perhaps because there was a very visual and newsworthy presentation to be made, unlike the individualised and complex nature of the Contaminated Blood Scandal.

A key document throughout the Inquiry has been the note from Dr Spence Galbraith who had warned the DH of the dangers of imported factor concentrates. He named “Joe Smith” as the main culprit for ignoring his concerns and someone who might benefit from a shock. Sadly, Dr Galbraith died, but the letter goes on to be highly significant. Carol and Dr Galbraith had had long exchanges over the phone, and he was very happy to know his earlier intervention could still be useful.

On the matter of involving the Police, the first approach was to the Met Police. They suggested going first to peoples’ local Police Forces. Then there were referrals to Powys who were the ones with that type of investigative specialism. However, despite all the evidence, the investigation didn’t progress.