8 July 2022: Grayson - B

Having re-visited the harrowing personal history of Pete and Carol, the focus of questioning shifted to campaigning. But first, some time was given to acknowledge the tremendous support of Alf Morris. The impetus for Carol and Pete getting involved in campaigning sprung from the way Pete was told about his HCV infection and the subsequent discovery about the waiver, the lack of consent for or even knowledge to the patients of testing, the non-disclosure of test results, and the overall paternalism of the health delivery system in the UK.

Quite early on in the campaigning efforts, the witness reported their recognition of the minimised role of women, both as main carers who had often been required to forego their own valid careers, and as people with bleeding disorders in their own right. The example was given of Carol’s campaigning friend and person with a bleeding disorder, Colette, who was accused of not actually having a bleeding disorder with the implication that women were not patients and did not have the same validity. This difficulty caused Carol and Colette to present a 70-page document to Ann Milton MP to highlight the issues for women. Carol also produced a very significant Masters dissertation, which was written in an era when most exchanges were by “snail-mail”. The Internet at this stage was in its infancy.

Carol has won awards for her campaigning, including her research and report-writing. She also supported groups overseas, for example, on AIDS issues in nations who had judgemental attitudes, and related to young Russian soldiers who had major drug misuse problems, but whose needs could not be met due to the need of the State to control (deny) information.

With Pete, Carol set up a campaign group, “Haemophilia Action UK”. They built up a strong relationship with local media, which allowed many stories and articles to first be aired in the Northeast, which then spread to London media, Scotland, etc. With her training as a health professional, she almost naturally fell into the role of offering telephone and other support. It was not uncommon for the phone to ring at 3am because someone needed to chat.

Another associated campaigner, Peter “Mossy” Mossman worked closely with Carol and Colette. During the mid-1990s there was considerable inwardly looking campaigning with, for example, the Haemophilia Society at the point when non-A-non-B (HCV) Hepatitis was growing as an issue. From Carol’s learning as a nurse and in social care, it gave her knowledge of how to find her way around discovering and understanding medical documents. A great deal of time was spent by Carol doing research, to the extent that she became intimately familiar with the content, look, and relevance of many of the key documents which are central to the Inquiry’s investigations.

A key area of focus for the witness was to press the Government to produce “The Blood Product and Self-Sufficiency Report”. However, when this was eventually published, Carol used her Masters dissertation as a way to critique and correct the report since she knew there were significant errors within it. This was not the sole focus of the dissertation, since it also covered wide-ranging matters such as the global commodification of blood, and the use of politico-medical language to keep ordinary people, including patients and other lay-people at a distance (as per Foucault), and as a way to manipulate information and hide it by its deliberate over-complexity. When asked, the witness said she stood even more strongly on what she wrote, as Counsel commented on how damning the dissertation was about the Government Report.

Part of the data for the dissertation was derived from a survey of people with bleeding disorders who were living with the consequences of contaminated blood. It highlighted the disempowerment of patients arising from their experiences of how they were treated, or not treated, or simply mistreated. Additionally, the research opportunities arising from the passing of the Freedom of Information Act, was a major advance in the opinion of the witness since there was much greater access to official material than had ever been before.

When a new organisation was established related to medical accidents, Carol contacted them to see how the case of haemophiliacs fitted their work. It turns out they didn’t fit, apparently. Carol was left to speculate that it didn’t fit the classical model of someone suffering by having the wrong leg amputated.

Counsel mentioned the large number of politicians, such as Health Ministers, who have been contacted by Carol. While some have been helpful, the overall experience was very negative due to the continual clinging to the set “line to take”, despite piles of evidence to the contrary being presented. They also did not minute any meetings, so the campaigners had to take their own minutes to have a record of what was presented. As a result of this, it became harder and harder for Carol to get people to agree to meetings. The witness gave the example of when she was due to attend a Question Time programme in her area. At the last minute she was called to say her place was withdrawn because the Health Minister, Alan Milburn, refused to appear if Carol was there. (What a woose!)