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Covid-19 and Co-Production in Health and Social Care Research, Policy, and Practice

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Covid-19 and Co-Production in Health and Social Care Research, Policy, and Practice COVID-19 AND CO-PRODUCTION IN HEALTH AND SOCIAL CARE RESEARCH, POLICY, AND PRACTICE Volume 1: The Challenges and Necessity of Co-production EDITED BY PETER BERESFORD MICHELLE FARR GARY HICKEY MEERAT KAUR JOSEPHINE OCLOO DOREEN TEMBO OLI WILLIAMS Book cover guidelines Monogram and bookmark The Monogram has been designed to keep Monogram Portrait covers all book covers anchored in the Policy Press brand regardless of book cover design. This is to ensure book covers are given the creative freedom afforded by their classification whilst ensure a strong relationship to the Policy Press brand. The monogram must always be displayed in the bottom right corner and each book cover design should allow for this. Portrait book covers The Monogram must appear no less The monogram should be 10mm height. than 7% of the book cover’s height. Landscape book covers The Monogram must appear no less The monogram should be 10mm height. than 8% of the book cover’s height. Ribbon Portrait covers Ribbon The Ribbon is used to indicate all Learning Resources and Core Texts and should RAPID RESPONSE COVID- 19 and Co- production in Health and Social Care Research, Policy, and Practice Volume 1: The Challenges and Necessity of Co- production Edited by Peter Beresford, Michelle Farr, Gary Hickey, Meerat Kaur, Josephine Ocloo, Doreen Tembo, and Oli Williams (editors listed alphabetically) First published in Great Britain in 2021 by Policy Press, an imprint of Bristol University Press University of Bristol 1– 9 Old Park Hill Bristol BS2 8BB UK t: +44 (0)117 954 5940 e: bup- [email protected] Details of international sales and distribution partners are available at policy.bristoluniversitypress.co.uk Editorial matter and selection © the editors. Individual chapters © their respective authors, 2021 British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN 978- 1- 4473- 6177- 0 OA ePub ISBN 978- 1- 4473- 6176- 3 OA Pdf The digital PDF and ePub versions of this title are available Open Access and distributed under the terms of the Creative Commons Attribution- NonCommercial- NoDerivatives 4.0 International license (https:// creativecommons.org/ licenses/ by- nc- nd/ 4.0/ ) which permits reproduction and distribution for non- commercial use without further permission provided the original work is attributed. The derivative works do not need to be licensed on the same terms. The rights of Peter Beresford, Michelle Farr, Gary Hickey, Meerat Kaur, Josephine Ocloo, Doreen Tembo, Oli Williams to be identified as editors of this work have been asserted by them in accordance with the Copyright, Designs and Patents Act 1988. All rights reserved: no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the prior permission of Bristol University Press. Every reasonable effort has been made to obtain permission to reproduce copyrighted material. If, however, anyone knows of an oversight, please contact the publisher. The statements and opinions contained within this publication are solely those of the editors and the contributors and not of the University of Bristol or Bristol University Press. The University of Bristol and Bristol University Press disclaim responsibility for any injury to persons or property resulting from any material published in this publication. Bristol University Press and Policy Press work to counter discrimination on grounds of gender, race, disability, age and sexuality. Contents Editorial statement vii List of contributors xi Introduction 1 The challenges and necessity of co- production: introduction to Volume 1 3 Peter Beresford, Michelle Farr, Gary Hickey, Meerat Kaur, Josephine Ocloo, Doreen Tembo, Oli Williams (authors listed alphabetically) Part I: The impact of existing structures 2 Whose views, and lives, truly count? The meaning of co- production against a background of worsening inequalities 19 Savitri Hensman 3 Silenced voices, unequal impact: addressing health inequities and discrimination in co- producing health and care during the pandemic and beyond 29 Josephine Ocloo 4 Co- producing and funding research in the context of a global health pandemic 39 Gary Hickey, Alison Allam, Usha Boolaky, Tess Mc Manus, Sophie Staniszewska, Doreen Tembo 5 Are we there yet? Co- production and Black Thrive’s journey towards race equity in mental health 49 Natalie Creary, Celestin Okoroji, Yasmin Ibison, Lela Kogbara, Jacqui Dyer iii iv Contents 6 Finding the voice of the people in the pandemic: an ethnographic account of the work of local Healthwatch in the first weeks of England’s COVID- 19 crisis 59 Giulia Zoccatelli, Amit Desai, Graham Martin, Sally Brearley, Glenn Robert 7 Co- production? We do community participation: experiences and perspectives in the context of the COVID- 19 crisis from Latin America 69 Cristian R. Montenegro and Felipe Szabzon 8 Sovereigns and servers: enablers and challenges to Sikh community- led activism during COVID- 19 79 Meerat Kaur, Harvinder Kaur Dulku, Bob Singh Virdee, Sarabjit Kaur 9 What are we clapping for? Sending people to die in social care: why the NHS did this and what needs to happen next? 89 Peter Beresford Part II: Infection and (increasing) marginalisation 10 Disabled people’s deaths don’t count: how a protected characteristic offered disabled people little protection during this pandemic 99 Ellen Clifford and Mark Dunk 11 Realities of welfare reform under COVID- 19 lockdown: what disabled and older people actually experience 109 The Secret Welfare Rights Worker 12 Against violence and abuse: gender- based violence and the need for co- production with women with experience 117 Sonia Braham, Naima Iqbal, Lucy Allwright, Ruth Atkinson, Cordelia Ruck 13 COVID- 19 and multi- generational households: reflections on the experience of a diverse urban community in Wales 127 Amal Beyrouty, Mashmooma Din, Eva Elliott, Allan Herbert (authors listed alphabetically) Contents v 14 Drug use and street homelessness during a pandemic: synergetic working with a vulnerable population 135 Anne Campbell, Kathy Faulkner, Chris Rintoul, Iain Cameron 15 ‘It’s all right for you thinnies’: ‘obesity’, eating disorders, and COVID- 19 143 Lauren O’Connell, Fiona Quigley, Oli Williams, Helen West, Sophie Metolli, Harry Pitham Afterword 16 Co- production in emergency responses and the ‘new normal’: an afterword for Volume 1 155 Peter Beresford, Michelle Farr, Gary Hickey, Meerat Kaur, Josephine Ocloo, Doreen Tembo, Oli Williams (authors listed alphabetically) Editorial statement The order in which editors or authors’ names appear on publications comes with specific assumptions and conventions in academic settings. Specifically, the convention is that the order reflects who had the most influence on the work or who made the greatest contribution, or indeed, who has the highest status in academia. There was tension between these academic and publishing norms and the participatory and collaborative approaches promoted and practised by the editors of this collection. These norms can perpetuate the exclusion of those who are already marginalised and largely ignore how structural inequalities render simplistic notions of meritocracy unfit for resolving inequities in academic publishing. Given this context and due to the varied but significant contributions made by all of the editors in this book, and in the spirit of collaborative and equitable ways of working, a pragmatic compromise was made to write the names of the editors alphabetically by surname; A–Z for volume 1 and Z– A for volume 2. Contributions Peter Beresford was approached by Policy Press to write a book for their Rapid Response series exploring co- production in relation to COVID- 19. He approached other service users and researchers (including those who see themselves as both of these), to see if they would be interested jointly in taking this idea forward as co-editors on a co- production basis. He has sought, from a service user researcher perspective, to support this project by working as an equal member of the editors group, writing one chapter, commissioning another, and vii viii Editorial statement editing/ reviewing several others as well as the introductions (providing an initial draft for Volume 1 Introduction) and conclusions. Michelle Farr has co- written one of the chapters in the second volume, edited five chapters, and commented, contributed to, and edited the introductory and concluding chapters. Gary Hickey has co-written one of the chapters in the first volume, edited six chapters, and commented on, and contributed to introductory and concluding chapters. Meerat Kaur wrote two chapters, one as a co- author of an initiative she was part of and another for an initiative she was aware of but which the people involved wanted writing support to share their experiences. She edited five chapters and contributed to the introductory and concluding chapters. Josephine Ocloo has written her own chapter in Volume 1, which included summarising key methods and examples of co- production discussed in both volumes. Her thinking on equity, diversity, and inclusion has made a substantial contribution to the intellectual thinking in the book and to the ideas about the need for equitable ways of recognising contributions in editorial processes. She has also edited four chapters, read all chapters, and commented on introductory and concluding chapters. Doreen Tembo was responsible
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