Introduction

Less than a year after it was first described, COVID-19 has had a profound impact on children and young people (CYP) and their families. While CYP have been relatively spared from severe clinical manifestations of COVID-19,1 there are growing concerns about the collateral impact of the pandemic on their health, well-being and development.2 Health services have adapted to meet these challenges, but patient and public involvement (PPI) in research, policy-making and service reconfiguration has been largely overlooked.3 The complex consequences of the pandemic cannot be addressed sustainably without community engagement, which takes on renewed importance in our era of ‘fake news’ and scepticism towards authority figures. How can we know what support patients and carers want, or what they need their future health systems to look like, without asking them directly? Meaningful engagement benefits all; health professionals can improve mutual understanding by developing equitable relationships with citizens, and this helps citizens to provide peer-to-peer support and better navigate complex local health systems.4

As a group of citizens, clinicians and researchers, we have worked together to mitigate the collateral damage of COVID-19 on CYP living in North West London (NWL). We have built on existing relationships with members of our communities to understand concerns and inform service co-design. Here, we explore the concerns of CYP and their carers and highlight examples of good practice to inspire others to strengthen PPI as the COVID-19 pandemic evolves.