Involving disabled and chronically ill children and young people in health service development

AIM: To investigate the extent and nature of involvement of physically disabled or chronically ill children and young people in local health service development. METHODS: A postal survey of all health authorities (n = 99) and NHS Trusts (n = 410) in England. RESULTS: Seventy-six per cent of health authorities and 59% of Trusts responded. Twenty-seven initiatives involving chronically ill or disabled children and young people in consultation regarding service development were identified. Over half of these were carried out in partnership between health services and other agencies, usually local authorities and/or voluntary organizations. A variety of methods was used for consultation, including child-friendly methods such as drawing, drama and making a video. Seventeen initiatives reported that children's involvement had resulted in service changes, but only 11 went beyond consultation to involve children and young people in decision making about service development. Only a third of the organizations had someone with designated responsibility for children's involvement. DISCUSSION: The involvement of this group of children and young people in service development in the NHS is at an early stage. The failure of policy documents on user involvement to identify children and young people as a group for whom methods of consultation need to be developed, and the lack of people with designated responsibility for developing children's involvement may be a reason for slow progress in this area. The initiatives identified show that such involvement is possible and can have a positive impact on services.