Under consideration PE2237: Create a “stage not age” health and social care and benefit system for people with exceptional complex medical needs

Background information

Children with exceptional complex medical needs in Scotland receive intensive paediatric support including specialist teams, therapies, rapid hospital access and 24-hour clinical respite. However, when they reach adulthood these essential services are lost, not because their needs change, but because adult services aren't designed for individuals who remain medically and developmentally child-like for life. Families face crisis, unsafe care, and collapsing support. For young people in foster care the situation is worse: foster carers are told to either continue caring with no financial support or return the young person to institutional care. This denies stability, family life and equality.

Such young people lose vital paediatric support and family financial support when moved to adult institutional services that cannot meet their lifelong child-level needs. It is my view that Scotland must ensure continuity, safety, dignity and proper lifelong support for such young people.

Despite raising these concerns with the former Cabinet Secretary for Health and Social Care and advisers, no meaningful action has been taken. A “stage not age” system is urgently needed to provide lifelong specialist care, therapies, proper respite and a lifelong foster care model. This petition is supported by many paediatric professionals.