Haemophilia and HIV stories

Mary Stewart, Oral History Curator at the British Library, writes:

The British Library oral history collections contain a wealth of information about health related issues, many from a patient perspective. Two powerful collections tell the life stories of people with bleeding disorders who were infected with HIV through contaminated blood products. Of the 1200 people infected with HIV in the late 1970s and early 1980s, over 800 have now died. Between 2003 and 2005 the HIV and Haemophilia Life History Project recorded the stories of thirty people with bleeding disorders and HIV. It became clear that in addition to these important recordings, there were many more, often silenced, stories, and a follow-up project, entitled HIV in the Family completed in 2007, gave a voice to thirty-six family members who witnessed their partners, their children, siblings or their fathers face the challenges of living, and dying, with HIV infection. The core interviewing team were based at the University of Brighton and both projects were run in partnership with National Life Stories funded by the Heritage Lottery Fund and supported by The Haemophilia Society and the Macfarlane Trust. An article about the project, including a powerful speech from interviewee Paul Bateman, was published in the NLS Review 2007-2008.

Four years after the end of the HIV in the Family project, Rob Perks and I were delighted to host at the British Library twenty-three nurses undertaking specialist haemophilia training. Together with Robert James, a key team member on both projects (and himself an interviewee) we introduced the nurses to the powerful testimony contained in the collection, and the fantastic website that accompanied the two projects: www.livingstories.org.uk. It was a moving afternoon, but clearly demonstrated the importance of these testimonies for health professionals in training. Although there are – thankfully – no new cases of haemophiliacs contracting HIV and Hepatitis C through contaminated blood products, haemophilia is a hereditary genetic disorder and the nurses we spoke to will have contact with current patients whose families have direct experience of this horrific episode in the history of the health service.