Still Lost in Transition?

ABSTRACT

Numerous policy directives highlight the need for planned and well-coordinated support to enable young people with long-term conditions and disabilities to negotiate the transition to adulthood, including making the leap from children-oriented to adult- centered health services. The journey is complex and multi-dimensional. For young people with a disability, long-term condition, or mental health problem there are additional challenges when transitioning between services with differences in expectations, delivery, and culture. This article explores findings from 6 case studies of young people who have recently experienced transition to adult health and care services, triangulating inter-related perspectives: those of young people, parents, and carers, and where possible the professionals involved. One of the case studies illustrates how the challenges are actually experienced. Analysis of emerging themes across the case studies leads to key messages from families to inform strategic development of services and practice.

KEYWORDS:

• Disability
• long-term condition
• mental health
• transition
• young people

Acknowledgments

The authors would like to thank all of the practitioners, professionals and partners of the Service Improvement Group focusing on Children and Young People with Long Term Conditions and Disabilities at the Cheshire and Merseyside Strategic Clinical Network (now the North West Coast Strategic Clinical Network) who contributed to this project. In particular, we acknowledge the young people and families who generously and honestly shared their experiences in the hope that the project would contribute to the continuing improvement of transition support for young people with long-term conditions, mental health difficulties and disabilities.