SUDEP Action

Making every epilepsy death count
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The NHS and Healthcare




2013 saw the start of a large scale reorganisation of the NHS – shifting control over creating, planning and delivery of local services to Clinical Commissioning Groups, also known as CCGs (clusters of GPs in local areas). With the upcoming election, these changes may well keep happening to the NHS and how services are provided.  

We work with these new changes and structures to make sure that policy and decision makers include vital services to those with epilepsy; ensuring that epilepsy risk, SUDEP and bereavement support are all included in future planning for neurological care. 

Working together to improve neurology care pathways

As part of this work we are working with other neurological charities to raise awareness of our concerns regarding epilepsy care across the UK. We are part of the Neurological Alliance, a collective voice for 80 organisations working together to make life better for millions of people in England with a neurological condition. Within this groups, we work together to campaign nationally and regionally for better services for people with neurological conditions. You can read their manifesto for improving neurology care here. 


In January 2015, the Neurological Alliance released their ‘Invisible Patients’ report into neurological care within CCGs They conducted a quality of commissioning audit and neurological patient experience survey, and the report identifies significant variation in the quality of the commissioning of neurological services among clinical commissioning groups (CCGs). We are working with them and others to continue to improve the standards of care for people with epilepsy. Find out more here: http://www.neural.org.uk/    

As part of our collaborative work on policy regarding healthcare, we are part of a group along with Epilepsy Society, Epilepsy Action, The RCGP, Public Health England, NHS England & NICE among others to produce a Commissioning Toolkit for epilepsy. This toolkit will enable CCGs across the country to carefully plan, implement and maintain epilepsy services in their area. A model of the toolkit was launched in March at the Neurological Intelligence Network annual conference & will be available for CCGs to use in their practice later this year.