Involving children and young people with a chronic illness or physical disability in local decisions about health services development

SPRU research team

• Jane Lightfoot
• Patricia Sloper

Key findings

Consultation activities with chronically ill or disabled young patients were few in number, but encompassed a range of ages and service settings and used a variety of methods. Young patients were rarely involved in subsequent decision-making to develop services.

Work with young patients appeared to be developed independently from general NHS Trust strategies for patient and public involvement.

Involvement could bring a range of benefits for young people and staff.

Young people wanted a say over consultation topics and to be kept informed about the progress of their ideas for service change.

There was no single, right method for consultation. In addition to more formal consultation, young people would like a listening culture that encouraged them to approach staff at any time.

Publications

All publications after October 2015 are available on the York Research Database. 

Additional information