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.