Aims To explore whether the rhetoric regarding children and young people being involved in healthcare decisions about them is reflected in reality.

Methods This paper will report on a study that compared what is said in relation to children’s involvement in healthcare decision-making within policy documents and professional guidelines (the rhetoric) with the results of research relating to children’s involvement in decision-making in the healthcare setting (the reality). Sociological theories of childhood will be used to explain why the reality does not match the rhetoric.

Results Children’s right to be involved in decision-making in the healthcare setting is apparent in English policy documents. However, this is not the case in professional guidelines or always the reality in practice. The prevailing viewpoint in relation to children’s participation in decision-making appears to be parentalist or protectionist.

Children, on the whole, are considered in need of protection and so are not able to make decisions relating to their care. This could be related to how society views children generally. Children are seen as becomings rather than human beings. There is evidence that the social world is generationed and that children are not given agency in this context. In relation to children’s participation in decision-making in the healthcare setting it appears that the rhetoric does not match the reality.

Conclusion Over a quarter of a century after the ratification of the United Nations Convention on the Rights of the Child (UNCRC 1989) children and young people’s voices still do not appear to be consistently heard in relation to decisions about their healthcare. Strategies need to be found to challenge Society’s prevailing view of children as being in need of protection so that it becomes easier, and more acceptable, for them to be involved in decisions about their own healthcare.