The single largest challenge for this group was the lack of accurate data in relation to the development of outcomes. This has been a long term challenge and has been repeatedly seen as ‘too difficult’ by those who have a contribution to make in meeting the needs of this group of children and young people. This has meant that for a group of children who test the interfaces of services and systems there is little currently that records their experiences or challenges and their often poor outcomes. The changes in health, and across the systems provide a real opportunity to tackle these barriers now.
Improved outcomes therefore depend on comprehensive quality assessments, access to a range of interventions, well coordinated over time and inclusive of the child’s, young person’s and family’s priorities. Outcome measures therefore need to combine life course outcomes (happiness, family functioning, educational achievement etc) with health service outcomes so that measures reflect changes in the condition, impairment or disability and their impact on the child, young person and their family.