Epilepsy toolkit

In England, people living with epilepsy and the systems supporting them are experiencing challenges including high misdiagnosis rates; inaccurate epilepsy population estimates; increasing mortality attributed to epilepsy and a lack of optimal management strategies that could reduce unnecessary emergency care for people living with epilepsy.

Developed in partnership with Epilepsy Action, SUDEP Action and Young Epilepsy, this Epilepsy Toolkit will support systems to understand the priorities in epilepsy care and key actions to take. It provides opportunity to assess and benchmark current systems to find opportunities for improvement. It is produced with reference to an expert group of stakeholders and is supported by NICE.

Wider consultation has taken place with patient representatives, clinicians, social care organisations, professional bodies and other key stakeholders

Commissioners responsible for supporting people with epilepsy for their population should:

  • Use the Epilepsy toolkit to work across systems ensuring that where possible the following improvement priorities are applied:
    • Identification and segmentation of epilepsy population
    • Misdiagnosis
    • Taking a risk management approach to mortality
    • Access to epilepsy specific services
    • Support for specific patient groups including children and young people, children transitioning to adult services, people with learning disabilities, pregnant women and older people.
    • Mental health and emotional wellbeing support
    • System-wide education and training on epilepsy
    • Medicines optimisation
    • Coordination of care
    • Personalised care
    • Experience of care
  • Use the self-assessment questionnaire to baseline your services and assess the extent of your improvement activity.

Relevant links to support implementation are included throughout this resource.