1st Edition
HIV in the UK Voices from the Epidemic
This book explores the thoroughly human dimension of the health care and prevention responses to the HIV crisis in the UK, and the impact that such initiatives had on the progression of the epidemic.
This book presents a compelling account of the unfolding of the epidemic and the initiatives that made all the difference in the care and prevention of HIV in the UK from the early 1980s to the present time. Drawing on interviews with people with HIV, doctors and nurses involved in their care, leaders of AIDS charities, activists, and politicians, it identifies and describes the models of care developed in response to the onset of the HIV epidemic, and its impact on NHS and voluntary organisations. It goes on to explore the political responses, the evolution of HIV stigma, and the personal impact of the early high mortality rates. Finally, it discusses recent organisational changes in the provision of care and prevention services. In doing so, this volume identifies the lessons learnt from the care and prevention of HIV, both in relation to HIV infection and other conditions, such as COVID-19, and discusses future challenges.
This book will be of great value to those working in services dealing with HIV, charities, and Clinical Commissioning Groups and GP organisations, as well as social historians and medical sociologists.
Part I – Setting the scene: The Chronology of HIV hope and despair 1.The dawning of the HIV epidemic 2.The Horror 3.Slow progress 4.Hope rising and the fallout 5.They think it’s all over: ‘it’s just a chronic illness' Part II – The legacy of HIV and lessons learnt 6.The development of Person-Centred HIV care 7.The Changing Narrative of HIV Death and dying 8.Changing attitudes to sexuality and HIV 9.Prevention: What have we achieved? 10.Conclusions and Future Challenges. Postscript.What can the HIV epidemic tell us about COVID-19? Appendix:The Participants
Biography
Dr Jose Catalan 0000-0003-4636-0012 is a psychiatrist and academic who has held academic posts at the University of Oxford and Imperial College London, and as consultant psychiatrist at Central North West London NHS Foundation Trust. His area of interest is the relationship between physical disorders and mental health problems.
Dr Barbara Hedge 0000-0002-5637-0516 is a consultant clinical and health psychologist who specialises in difficulties related to HIV and sexual health. She was Director of the Clinical Psychology training programme at the University of Hertfordshire UK, and Professor of Clinical Psychology at the University of Waikato, NZ.
Professor Damien Ridge 0000-0001-9245-5958 is Research Director at the College of Liberal Arts & Sciences, University of Westminster, specialising in chronic health conditions, and is a practising psychotherapist. He has held research posts at the University of Oxford and City University London.
"HIV in the UK…provides clear yet nuanced discussions that challenge simplistic narratives of HIV and its history... As a whole, HIV in the UK provides insightful commentary on the evolution of HIV healthcare in the UK. As such, this book should be a first port of call for anyone wishing to learn more about the history of HIV healthcare in the UK."
Jaime Garcia-Iglesias, Health
"Eloquent and a mix of painful and inspiring, this book, assembled from a group of seemingly disparate but deeply interconnected actors, tells stories of suffering, mobilisation and hope. It is a form of remembrance, but it is also much more. It is an account of trauma and atrocity, understanding and advocacy, as well as partnership and collaboration. Now, more than ever, we need these rigorous, critical studies that foster a collective memory around how epidemics are iteratively experience, managed, and overcome".
Alex Broom, Professor of Sociology, School of Social and Political Sciences, University of Sydney, NSW.
"What this book accurately calls the ‘horror’ of the HIV epidemic is fading from memory. The authors have salvaged what needs to be remembered and learned from the experience of those for whom the horror was every day, lived reality".
Jonathan Grimshaw, MBE, Activist.
"Seen through the eyes of people who lived it, this unique account of four decades of HIV in the UK is part oral history and part analysis of responses to the personal, medical, and social challenges the epidemic imposed. It offers much wisdom and useful lessons for the future of humane and person-centred models of care, in pandemics and beyond".
Hilary Curtis, PhD, Freelance Researcher.
"Passionate, poignant, inspiring and timely. This excellent book recounts the experiences of those on the front line of the epidemic over the past four decades. This is history. A tribute to those who have died…and to those living with HIV today".
Christopher Sandford, Theatre and Film Director and Activist.
"This is a compelling story of HIV and AIDS that does justice to the emotions, the fears, and the hopes of the patients and health care workers who together fought battles for social justice, medical advances, compassion, and holistic care. The partnership between patients and their carers, staff in the NHS and voluntary sectors as well as politicians and the media, was at times fraught and raw, but our learning and reflection of those times can help shape our approaches and aid recovery from current and future challenges of infectious diseases".
Professor Simon Barton, Medical Director of Commissioning, NHSE/I London Region, and HIV/GUM Physician (1988-2020), Chelsea and Westminster Hospital, London.
"None of us who lived through the early years of the AIDS crisis could have realised quite how bad things would get, or how long it would last. The authors of this timely book have marshalled a wealth of voices, including doctors, nurses and other carers, activists, and patients, providing vivid personal testimony to the history of HIV/AIDS in the UK, which has until now been significantly neglected. There are many lessons to be learned from these pages, not the least of which is the role of the state in adequately funding and maintaining public health".
Simon Watney, PLWH, Art Historian and Author.
"This is an excellent and much needed book - it is certainly heartfelt, and the quotes are very much the meat of the text. It should be available in schools, colleges, public libraries, and for those on the gay scene and also for medical students and the wider profession, since the lessons learnt here spill over into general medical practice".
Mr Jeremy Booth, Former Clinical Director of Surgery and Accident and Emergency Medicine, Chelsea and Westminster Hospital, London.
"The authors have done an extraordinary exploration into the experience of people who lived with the initial shock of AIDS and the subsequent traumas in a health care system and society quite unprepared for the revolution it would create in all sectors. This book is an important insight into the perils of the time and the changes that resulted. Crises drive political change and energise creativity. This book should be a reminder not only that a great deal of suffering brought about these changes but that HIV prevention is still required.".
Professor Roy Robertson, GP in Edinburgh and Researcher at Edinburgh University.
"The book contains a history of the 40 years of HIV/Aids; a foundry where much best practice was forged – not only the clinical breakthroughs but also what was called ‘policy from below’ or what would today we’d call ‘co-production… There are valuable discussions about the political reaction and truly remarkable clinical response … and [it] is also very good on behaviour change – shifting from the stigmatising discussion about sexual orientation (‘gay plague’) to sexual behaviours (condoms, "negotiated safety" and "zero grazing") to the harm reduction measures like needle exchanges (by 1991, 4 million needles distributed a year.)… a very valuable source book from people who were there."
Mike Waddington, Central and North West London NHS Foundation Trust
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.
George Severs, Postdoctoral Research Fellow in the Department of History, Classics and Archaeology at Birkbeck College, University of London.
