The voices of children and young people in health: where are we now?

‘Make decisions about us, with us. Let us have our say!’  Royal College of Paediatrics & Child Health Youth Advisory Panel member1 Universal children's day on 20 November 2014 marked the 25th anniversary of the UN Convention on the Rights of the Child (UNCRC,1989)2 and the 55th anniversary of the Declaration of the Rights of the Child (1959).3 Twenty-five years after the UNCRC, this article explores the rights of children and young people (CYP) to participate in decisions about their healthcare, and the benefits of doing so; we then examine where we are now with respect to the voices of CYP in health. This article addresses this final question through three aspects: first, by celebrating the progress made over the last quarter of a century—particularly with respect to policy development—both in the UK and internationally; second, by identifying ongoing areas of concern, with suggestions as to where to focus our efforts next; and finally, by calling for a change in culture. This change of culture is suggested through four positive concrete steps: a greater dissemination of guidance and examples of good practice, greater evaluation of the participatory process, appropriate training and procedures in place to support CYP participation and finally encouraging increased involvement of CYP in improving their own health. Through these steps, we aim towards a culture where CYP are valued, heard, understood and, ultimately, their rights are respected. With the UNCRC having been ratified by most UN member countries (the UK in 1991), such landmark agreements focus attention on the fundamental and inalienable rights applicable to every child and young person worldwide. An important element of these rights is the right to participate in decisions about their own care, including their healthcare. Support for the participatory role of CYP includes the right to express their …