By Jose Catalan, Barbara Hedge and Damien Ridge
Oxford: Routledge, 2021, 220 pp, hardback £120.00
Mention of ‘voices’ will draw oral historians to this book, but HIV in the UK is not an oral history. The authors do not suggest that it is: the book is published within Routledge’s Studies in the Sociology of Health and Illness series and none of the three authors are historians by training. In addition to their academic careers, Catalan and Hedge have been ‘frontline mental health clinicians’ since the early 1980s whilst Ridge is a psychotherapist (p 3).
HIV in the UK will, however, be a valuable resource for historians and students interested in the British experience of HIV/AIDS, especially where healthcare is concerned. It offers a historic and sociological analysis of the ways HIV has impacted the lives of people living with the virus and of those who cared for them. In a cautionary note in the introduction, the authors claim that this is not a ‘comprehensive history’. They should be commended, though, for the range of experiences captured and discussed in this book. HIV in the UK brings together the experiences of gay men, injecting drug users, haemophiliacs, those who contracted the virus through heterosexual sex, charity workers, and activists. The authors are sensitive to the varied experiences of people living with HIV: whilst 91% of their interviewees were white, the authors are attentive to the ways in which their Afro-Caribbean and South East Asian participants’ experiences were particular.
The majority of the participants (45%) are healthcare professionals. This, combined with the academic and practical expertise of the authors, leads to some of the book’s major contributions concerning changes in healthcare practices. Whilst it is well known that one of the major impacts of HIV was to cement more patient-centred practices within the NHS, HIV in the UK offers a more nuanced account of the undulating changes to the doctor-patient relationship from the early 1980s to the present. Chapter six studies this in detail, making clear how changes to healthcare commissioning post-2012 have threatened the degree of choice and control patients have over their treatment, but this changing relationship is a consistent theme across the book.
Those oral historians who do make their way to this book may encounter some disciplinary obstacles to fully engaging with it. The first is the book’s limited interaction with oral history theory or with oral histories of HIV/AIDS in Britain. Of course, as I have already said, this is not a book which purports to be an oral history, so I am at pains to stress that this is a frustration which oral historians are likely to experience rather than a criticism of the book. The authors do draw upon Virginia Berridge’s landmark history AIDS in the UK, but for a project so concerned with ‘voices’ and memories of HIV in Britain, one might expect to see mention of Wendy Rickard’s work on oral histories of HIV in the UK or the use of recent oral history scholarship concerning narrative and memory. Instead, the authors stick to their own disciplinary canon (I imagine that, like me, oral historians will benefit from exposure to a sociological reading list) and refer to more general-interest work on HIV history such as Tom Crewe’s 2018 London Review of Books articleand Simon Garfield’s 1994 The End of Innocence. This book could also have benefited by including analysis of archived interviews such ‘HIV/AIDS Testimonies’ and ‘The AIDS Era: an oral history of UK healthcare workers’ (each housed at the British Library). These collections are of clear interest to this book, and may have helped the authors to expand what they suggest is a heavy concentration of London- and England-based interviewees (p 3).
The second matter which is likely to linger in the minds of oral historians reading this book is its insistence on anonymity. HIV in the UK relied on what the authors refer to as ‘a tried and tested approach in the social sciences, namely qualitative semi-structured interviews and thematic analyses’ (p 2) in which ‘participants’ individual responses are anonymised’ (p 3). Of course, many oral historians have decided to anonymise their participants even when those participants would rather be identified, either because it is deemed more ethical or because it provides analytical distance between interviewer and interviewee. Such distance is reached in this book, but at times this becomes slightly too clinical and impersonal. The few details that the authors provide before a quote do not always provide enough context. For example, on page 46 the authors introduce us to ‘A nurse’ who ‘highlighted the invaluable role played by local volunteers’. Where these local volunteers were working is omitted, but if regional and local perspectives really matter to our historical understanding of the epidemic (as the authors suggest by offering this quote, and as has been so persuasively argued recently by Matt Cook and Alison Oram), then the ‘anonymous’ deployment of this quote strips it of much of its utility. This is especially important in a book which deals with AIDS in the UK: experiences of the virus varied across the four home nations just as they did from city to city and in urban versus suburban and rural contexts. Knowing where these voices are speaking from matters to how we historically assess them and without this information, they become markedly less useful to the historian of HIV/AIDS.
This book is at its best when discussing twenty-first century challenges facing people living with HIV and the people who care for them. Chapter five in particular is a valuable reminder that assuming HIV to be a ‘manageable chronic illness’ obfuscates the ongoing comorbidities for people living with HIV alongside increased pressures on HIV services. For me, the triumph of this book is its identification of the impact which Cameron-Clegg era austerity economics has had on HIV service providers. In particular, the authors identify the ways in which the Health and Social Care Act 2012, which split HIV treatment and care from prevention services (the former commissioned nationally by NHS England, the latter the responsibility of local authorities’ Public Health Commissioners), has fragmented and frustrated HIV service provision across England. This issue, alongside ongoing demands for pre- and post-exposure prophylaxis, are timely reminders that HIV-related injustices persist; the voices of frustrated clinicians and exasperated people living with HIV should prompt renewed calls for change.
