Children with childhood-onset physical disabilities arising from an impairment to the brain or neuromuscular system, such as cerebral palsy or spina bifida, are intensive users of health services. These are lifelong conditions and therefore children will be transferred from children’s to adults’ health services around 18. Transition is the process of preparing young people for the adult healthcare system. Our research shows that transition is poorly managed for people with childhood-onset physical disabilities in Ireland. They describe receiving little information, not being prepared for differences between children’s and adults’ services, and difficulty navigating the adult healthcare system. Although they have access to a Paediatrician and multi-disciplinary team in childhood, no equivalent service exists in adulthood. This means their GP becomes responsible for co-ordinating their care.
Best-practice guidelines recommend that children’s service providers meet regularly with the young person, family and GP to prepare for the move to the adult healthcare system. In Ireland, GPs are not involved in transition. They have difficulty co-ordinating the person’s care in adulthood because they have little information about their condition or medical needs. When we asked young people and parents how transition could be improved, educating GPs was one of their priorities.
We will engage with GPs, Paediatricians and health professionals in disability services, young people and parents to share our research and resources relating to transition for children with childhood-onset physical disability and create solutions to improve GP involvement in transition. Through a co-design process, we will define information needs of GPs, map existing information flows between children’s disability services and GPs, identify priorities and actionable solutions to improve GP involvement, and create and refine prototype solutions based on user feedback. We will then share research findings, the co-design process and solutions with GPs, children’s disability service providers, young people and families.