Service User Involvement and COVID-19-An Afterthought?

We come to this paper as researchers and activists working in the field of service user involvement for many years, who are genuinely worried that, during the Covid-19 pandemic, years of progress in service user involvement are being dismantled by service users being marginalised in key decisions and matters affecting their lives. We know that service user involvement before the pandemic was not perfect, but we did have an established system in the United Kingdom (UK) in particular, where service user involvement was a normative part of thinking when it came to service provision in key areas of policy in public life. What spurred us to write this paper was our feeling that service users have been treated as secondary, what we term 'an afterthought' in regard to involvement in key aspects decisions that would impact their lives at a time of societal crisis and uncertainty. Our paper carefully examines the issues by focusing on the experiences of disabled people in particular whilst not overlooking the needs of others who have also been left on the outside. We conclude with recommendations for better ways of working going forward when it comes to re-establishing meaningful service user involvement in research, policy, practice and education. We are researchers and activists working in the field of service user involvement for many years in the UK and internationally who are concerned that, during the COVID-19 pandemic, years of progress in service user involvement have been unravelled by service users being left on the outside of key decisions and matters affecting their lives. Instead, we argue, they have become an afterthought. As authors, we combine both academic and service user experience and have been involved in advancing practice, understanding and guidance about the significant contribution that service users bring to knowledge production. This article examines the issues by focusing on the journey of service user involvement before and during the pandemic, as well as on what should come after. Turning to the experiences of disabled people as a case study example, we argue that going back to 'normal' would be fundamentally flawed, as evidenced by the marginalised way in which service users have been treated during this period of societal crisis. Our article concludes by urging a reflexive stance to ensure service user involvement re-establishes its pivotal position in public policy and practice.

COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice

EPDF and EPUB available Open Access under CC-BY-NC-ND licence. Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now largely being ignored in developing responses to it. This two-volume set of Rapid Responses explores the urgent need to put co-production and participatory approaches at the heart of responses to the pandemic and demonstrates how policymakers, health and social care practitioners, patients, service users, carers and public contributors can make this happen. The first volume investigates how, at the outset of the pandemic, the limits of existing structures severely undermined the potential of co-production. It also gives voice to a diversity of marginalised communities to illustrate how they have been affected and to demonstrate why co-produced responses are so important both now during this pandemic and in the future. © their respective authors, 2021. All rights reserved.

COVID-19 and Co-production in Health and Social Care Vol 2: Volume 2: Co-production Methods and Working Together at a Distance

EPDF and EPUB available Open Access under CC-BY-NC-ND licence. Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now being largely ignored in developing responses to it. This two-volume set of Rapid Responses explores the urgent need to put co-production and participatory approaches at the heart of responses to the pandemic and demonstrates how policymakers, health and social care practitioners, patients, service users, carers and public contributors can make this happen. The second volume focuses on methods and means of co-producing during a pandemic. It explores a variety of case studies from across the global North and South and addresses the practical considerations of co-producing knowledge both now - at a distance - and in the future when the pandemic is over. © the editors. Individual chapters. their respective authors 2021. All rights reserved.

Participatory ideology: From exclusion to involvement

The COVID-19 pandemic, Black Lives Matter movement and renewed action against climate change all highlight the increasing gulf between narrowly based dominant political ideologies and popular demands for social justice, global health, environmentalism and human rights. This book examines for the first time the exclusionary nature of prevailing political ideologies. Bringing together theory, practice and the relationship between participation, political ideology and social welfare, it offers a detailed critique of how the crucial move to more participatory approaches may be achieved. It is concerned with valuing people's knowledge and experience in relation to ideology, exploring its conventional social construction including counter ideology and the ideological underpinnings and relations of participation. It also offers a practical guide for change. © Bristol University Press 2021.