Resources to support good services for people with epilepsy

This Epilepsy Awareness Week we want to take a moment to highlight the range of education, resources, tools and support currently available to help healthcare professionals, service managers and commissioners improve services and support to those living with epilepsy across the UK.

Commissioning and service planning is an essential part of managing epilepsy well, and existing tools and resources to support planning and provision of services for epilepsy include:

• Right Care Epilepsy Toolkit.
• The Purple Light service improvement toolkit

• The epilepsy OPTIMUM clinical pathway

You can read about these resources and how Neurology Academy supports commissioners and services planners here.

The OPTIMUM clinical pathways, a suite of tools, each focused on a different neurological condition, are aspirational in the sense that they depict the optimal journey of someone with the condition. Adapting the national pathway for epilepsy to local services may require a collaborative approach. Learning from other conditions can be helpful, and Dr Ian Pomeroy, who is leading a group of clinicians in adapting the MS OPTIMUM clinical pathway for his area, has shared some early learning which may be useful for those looking to implement the epilepsy OPTIMUM clinical pathway

Currently under development is a new preconception pathway for women with epilepsy. Vital for women with epilepsy who wish to plan a pregnancy, preconception care is a healthcare intervention that offers the opportunity to reduce and avoid some of the risks caused due to seizures and anti-seizure medications, which can increase the risk of problems for mother and baby. Currently, there is no agreement on the content of preconception care provided for women with epilepsy, but there are hopes to change this. A Delphi survey is currently gathering evidence to support a national pathway outlining consensus preconception care for women with epilepsy. The survey closes on 31st May - to respond, find it here.

Hearing from people living with epilepsy and their personal experiences can help focus us on why we need to invest time and energy in improving service planning, provision and delivery. Our managing director Sarah Gillett is an ambassador for the Voice for Epilepsy, a national organisation dedicated to giving people with epilepsy a platform to share their stories, and to raise awareness of the many different ways that someone can experience epilepsy.

Kasam Parker, founder of the Voice for Epilepsy, lives with epilepsy himself, and provides insight into his own journey in one of the sessions for Epilepsy Bitesize, our free, online series. The short course was developed as a starting point for healthcare professionals looking to develop a good overall understanding of epilepsy.

With sessions covering detection and diagnosis, through to treatment and management, practical service planning, and an awareness of the varied impact that the condition can have on people's daily life, the course is a good place to begin developing an expertise in epilepsy.