Introduction

Involving children and young people in NHS services has become an imperative for Hospital Trusts and given momentum by the Patient and Public Involvement (PPI) initiative and organisations such as National Institute for Health Research (NIHR) INVOLVE. An overriding concern with attempts to ‘involve’ children and young people in health settings has been on seeking their views or advice on matters defined by health professionals and researchers. Yet with a growing ethos towards shared decision-making, co‑production, and developments to the theory and practice of children's participation (Banks et al, 2018; Tisdall, 2013; Percy-Smith, 2018), there is a shift towards more active approaches to children's participation in healthcare settings that recognise the importance of involving children and young people in all phases of the project cycle and in a wider range of contexts. This chapter draws on a collaborative action inquiry project with a UK NHS Hospital Trust to share the experience of developing meaningful and effective opportunities for involving children and young people across the Trust. Different strategies adopted, as well as some of the issues and challenges faced, will be discussed. In particular, the chapter will critically reflect on the significance of participation as patient experience and the challenges of integrating children's participation into organisational cultures and systems. Emphasis is placed on the need for creativity and flexibility in work with children, the critical role of adults as advocates and the importance of integrating a learning ethos into systems and practices across the Trust.

Developing the participation of children and young people in healthcare settings has been slower than in many other sectors such as schools and broader contexts of local governance in local authorities (ECORYS, 2015), in spite of the PPI initiative. Emphasis in involving children and young people has predominantly focused on seeking consultation and advice from children and young people, for example, through the gold standard of young people's research advisory groups (Nuffield Council on Bioethics, 2015; Caldwell and Jarrett, 2018). Children's participation in health settings is primarily about influencing the way in which hospital services are delivered, and in turn experienced, by children and young people.