This report aims to answer the following questions:
- why are current services not up to scratch, and how can we close the gap?
- what’s stopping us from achieving national guidelines for epilepsy services?
- how can we improve outcomes for children and young people with epilepsy?
The work utilises a range of sources in a scoping review of the evidence; this includes peer-reviewed studies, grey literature, guidelines and standards. The other components of the report use qualitative data gained from group interviews with parents, completed questionnaires from young people and perspectives from a multi-professional forum (which included commissioners, healthcare professionals, education and social care representatives amongst its numbers).
The report provides key findings which look beyond the often-quoted statistics, to identify the real barriers and enablers to providing better care. In its key recommendations, it provides a proposed set of shared goals towards the aim of improving epilepsy services for children and young people. Policy-makers and commissioners must take these recommendations and work together - in collaboration with professionals and with children, young people and their parents - in order to achieve lasting and transformational change. It is only through this process that the type of service that children and young people with epilepsy deserve can be delivered.
