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.
Key Problems Identified
- Fragmented Services: Health, education, and social care often work in silos. Families struggle to navigate the system, and professionals find it hard to coordinate care.
- Lack of Integration: Children with epilepsy need support from many agencies, but there’s little collaboration between them.
- Poor Communication: Both families and professionals reported that communication between services is inconsistent and often ineffective.
- Limited Access to Specialists:
- Many areas lack epilepsy specialist nurses.
- Mental health support is often missing, despite its importance.
- Funding Issues:
- Services are underfunded or misdirected.
- Parents often have to fight for support, which wastes time and resources.
- Inadequate Data:
- We don’t have enough information about children with epilepsy.
- Without proper data, it’s hard to plan services or measure outcomes.
- Training Gaps:
- Teachers, social workers, and even some healthcare staff lack epilepsy-specific training.
- This leads to misunderstandings and missed opportunities to support children properly.
- Stigma and Cultural Barriers:
- Misconceptions about epilepsy still exist, affecting how children are treated in schools and communities.
What We Learned from Families and Professionals
- Parents feel excluded from decision-making and often aren’t listened to.
- Young people want more control over their care and better access to support.
- Professionals are eager to improve services but need better tools, leadership, and funding.
Recommendations
- Establish a registry of children and young people with the epilepsies: This would allow professionals to learn about and map the needs of their population - informing the design and structure of services, and enabling crucial research.
- Create an individualised plan for every child and young person: This plan (Education, Health and Care Plan) must reflect their needs across a full range of professional services.
- Develop a patient-held (or parent-held) electronic record: As well as enabling better integration across different service organisations, this would empower young people to take greater control of their condition allowing the use of helpful self-management strategies.
- Design a ‘year of care’ tariff for the epilepsies: This would better reflect complexity and heterogeneity of the condition and would allow commissioners to take a condition-wide view, encompassing the broad associations that are unique to the epilepsies (such as the impact on education and mental health).
- Audit annual review of relevant outcomes for each child and young person: These should be a mix of health-related, quality of life, functional and experience measures. It is imperative that regular national audits continue.
- Commission economic evaluation of good epilepsy care: A robust economic analysis would better map out the advantages of an integrated approach, and enable many of the other recommendations of this report.
- Improve and expand networks: Regional professional networks (reflecting all relevant professional agencies) aid integration by allowing regular liaison allowing them to communicate with policymakers with a collective voice. The organisation of young persons’ and parents’ groups should also take place on a similar basis
