The transition from children’s to adult health services for young people with exceptional needs and their families is complex, multifaceted and fraught with concerns and fears. CEN Scotland commissioned Talking Mats to carry out a study to collect the views of 10 young people and their families who are experiencing this transition in Scotland.
The families in the project have given us clear views about their problems and fears and also some thoughtful suggestions for what could be made better. It is often in making small changes that significant improvement can occur. These suggestions include:
- Courses for parents on transition
- More specialist nurses e.g. transition nurses, acute liaison learning disability nurses
- Start preparing early – at least 2 years
- Transition wards for young people
- Training for doctors and nurses about complex needs
- More respite, not less
- Emotional support for parents
- Longer appointment times
- A hotline to GPs
This study captures the complexity and variation of transition health services for young people with complex health needs from the perspective of both the young person and their parents. Despite the problems and fears we also saw evidence of good practice and suggestions, such as those above, which give hope for the way ahead.
To read the full report, including a moving case study, and direct comments from families, please click here CEN Transition Report