Aims Care for children and young people (CYP) with epilepsy in the UK has been deemed inadequate, with service-level indicators showing only marginal improvements over time, despite national guidelines and standards and training. Meanwhile, increasing evidence has demonstrated the broad functional impact epilepsy can have on individuals, yet no attempts have been made to address this. The voice of CYP and families has remained absent in analyses, despite increasing opinion this should be at the centre of care.
This work aimed to work alongside CYP to identify the underlying reasons as to why epilepsy care has not appeared to improve, to recognise factors that would drive improvement and examine potential solutions.
Methods To adequately represent the wide range of CYP affected by epilepsy, subjects included CYP with both relatively well-controlled seizures (via young people’s groups in London), and with complex and severe epilepsy (in full-time residential care). Semi-structured group interviews, one-to-one conversations and questionnaires were used, involving 24 young people aged from 8–23 years. Thematic analysis of the resulting data transcripts was carried out and distinct, cross-cutting themes identified.
Results The following six themes were identified as barriers to good epilepsy care:
difficulties in navigating the system
lack of resources
inadequate professionals’ training
the voice of CYP not being heard
a lack of a tailored approach for individual CYP.
The following factors were identified as enablers for improvements in care:
better communication (between CYP/families and professionals, and between professionals)
a more tailored approach
increased, improved, meaningful data that is individualised
a strategy that works across all sectors (including mental health, education and social care).
Conclusion Our work identified factors preventing good care for CYP with epilepsy, and ascertained avenues for improvement. Crucially, these findings derived from the perspectives of CYP themselves. Any solutions to improve epilepsy care must be person (or family) centred, individualised, and better integrated across all relevant sectors, and measured against meaningful outcomes.
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