Mr Watters joined the Haemophilia Society in early 1981 as Coordinator, and later became General Secretary in 1986. Mr Watters told the Inquiry there was no difference in these roles. He described the office when he began as being himself and 2 part-time secretaries. Mr Watters explained his roles and responsibilities in his job. Mr Watters agreed with the 1986 annual report description of his role as day-to-day administration of the office and communication with society members. He described spending time with Haemophilia Centre Directors to gain insight. He also described how he helped with tax reclaims and provided assistance to help members access welfare benefits; Mr Watters agreed that the welfare benefits system had a poor understanding of bleeding disorders. He said he worked under the direction of the Chair and the Board.
Mr Watters explained the aims and objective of the Haemophilia Society. He agreed with the aims laid out in the Group Seminar 1981. The aims were: to provide a fellowship for haemophilia sufferers and allied conditions, to safeguard economic and social interests of sufferers, to promote the study of causes and treatments of haemophilia and allied conditions, to gather and publish information for sufferers and the general public, to co-operate with medical and allied professions for the benefit of the Society, to cooperate with other societies with similar aims and to provide financial help when necessary and practical. Mr Watters clarified the main means of communicating information to members was through the Bulletin and local groups.
Mr Watters explained the structure of the Haemophilia Society when he joined in 1981. The Board of Trustees (Executive Committee) were at the top of the pyramid, they were all people with some personal affiliation to haemophilia and were selected by nomination. Below the Board were the Council which had representatives from each local group. There were also various sub committees such as the Research Grants Committee, which would consider applications for grants on research and make recommendations to be approved by the Executive Committee. If this was approved, it also had to be approved by the council. Local groups were the local presence of the Haemophilia Society, in 1981 it was shown that there were 28 local groups. Counsel noted that some local groups would create newsletters, Mr Watters explained that this would be dependent on the capabilities of the local group.
For funding, Mr Watters said around 600 appeal letters would be sent per year, Pharmaceutical companies would sponsor their work and a significant amount of funding was raised by the activities of local groups. Mr Watters said he had the impression when he joined the Haemophilia society that it was 30 years behind in lots of respects, in comparison to the slick management he had experienced at other organisations. He noted a lack of outreach and grasp of big issues and there was a lack of understanding of the predicaments in local hospital departments.
Mr Watters spoke about the Society being invited to send members to annual UKHCDO meetings. He described society representatives as respectful and deferential to the Directors. He also explained how it was essential for the Society to have a relationship with the Department of Health and Social Services (DHSS). He would regularly attend meetings with civil servants, and less frequently with ministers. He said from 1983 onwards, AIDS became a primary topic of discussion, prior to this supply of products was the main topic. Documents were shown relating to a ministerial meeting in October 1981 with the Health Minister and the Haemophilia Society. Mr Watters said they were taken by surprise by the warm way they were welcomed and felt encouraged by the emphasis that had been put in achieving self-sufficiency and information of new funding. He said the emphasis seemed far greater than what was implied in the documents shown.
The role and make up of the Medical Advisory Panel was discussed. Mr Watters said the size of the panel varied over the years and they were made up of clinicians, primarily UKHCDO members. Mr Watters said he expected selection of members was related to seniority and number of patients. A 1982 council meeting showed the approval of Professor Bloom being sought before the appointment of members. Mr Watters suggested that as Professor Bloom was Chair of the UKHCDO it was likely he would know if those appointed were good. However, he agreed in hindsight this may exclude those with different views. Mr Watters said that with the benefit of hindsight, by taking advice from senior members of UKHCDO, the Haemophilia Society was disabling itself from scrutinising decisions made by the UKHCDO and was too trusting of the advice of the panel. To address concerns about the panel in the early 1990s, Mr Watters proposed terms of reference for the panel, laying out an expectation for members to give evidence in their best personal and unbiased opinions and for members to be appointed for one year only.
The Blood Products Sub Committee’s role was concerning safety and efficacy of blood products and to be on the back of the Department of Health regarding self sufficiency. Mr Watters said although there was no direct link between the Medical Advisory Panel and the Blood Product Sub Committee, a member of the panel would sit in on meetings of the sub committee. Mr Watters was questioned on how the Society kept up to date on risks and monitored safety. He noted they were a small organisation and relied upon the UKHCDO, Journalists, pharmaceutical companies, civil servants, medical journals and the Medical Advisory Panel as principal sources of information.
Mr Watters described his understanding of Non-A, Non-B Hepatitis in the early 1980’s as a mild, benign condition. He said the society was aware of Hepatitis and considered it a reason for self sufficiency. He recalled that concerns on the storage of blood products being tested retrospectively without consent came to his attention through the HIV testing. He noted that discussions of sources of donations of blood in the UK such as from prisoners was not talked about a lot but there was an awareness of this in the Society. Mr Watters said that the main mechanism by which the Society informed members of risks was through the Bulletin, but the publications were never intended to replace medical advice.
Mr Watters gave insight into correspondence with Professor Bloom in January 1983 regarding a newspaper article on the AIDS crisis. Professor Bloom’s response suggested it was a potential, rather than a real threat and the benefits outweighed the risk, which at the time seemed reassuring to Mr Watters. He also recalled a letter shown to him by a journalist in 2017 when he was contacted to film a Panorama documentary. Mr Watters described the letter as a heavily redacted letter to Professor Bloom from a branch of the Health Department telling Professor Bloom. The letter said there was going to be a problem with concentrate but that he should advise patients to keep using the products and that the benefits outweigh the risks.