By Professor Tony Marson, Consultant neurologist and epileptologist at The Walton Centre and Professor of Neurology at The University of Liverpool. Theme Lead for ARC NWC Person Centred Complex Care Theme.

When Prof. Mike Pearson and I established the National Audit of Seizure Management in Hospitals (NASH) in 2010, the ambition was to collect data that could evaluate whether the care given to people with epilepsy was good enough. Similar to the work of the PCCC team here at ARC, our goal was to understand the delivery of care in complex environments, in order to reveal how the delivery, efficiency and equity of that care might be improved.

Here is an insight into the key mileposts along NASH’s development, coupled with a compelling and timely case for its latest recommendations to be implemented across the UK.

The first two rounds of NASH took place in 2011 and 2013, collecting data on almost 8,300 emergency department (ED) presentations across the UK. The results from these initial two rounds clearly showed sub-optimal levels in many aspects of care, as well as wide variability across sites. Bespoke reports were provided for all participating sites and overall reports were published.

As an example, in the North West Coast region, the early Cheshire/Merseyside data showed that only 8% of people with suspected first seizures met the NICE (National Institute for Health and Care Excellence) recommendation of a specialist review in two weeks.

To investigate this further, with funding from the Collaboration for Leadership in Applied Health Research and Care (now Applied Research Collaboration North West Coast) the Care after Presenting with Seizures (CAPS) project was created, with the aim to find out if actively helping patients to attend an early two-week appointment will make the changes that reduce readmissions, re-attendances and improve quality of life.

A dedicated nurse was placed in three hospitals across Merseyside, who identified the patients who attended the Emergency Departments in the previous 24 hours with a seizure (regardless of whether or not they were admitted) and offered an appointment at a seizure clinic within the next fortnight. Findings were published and highlighted that a nurse-supported pathway can improve appointment rates, but the effect is modest. Further service redesign is required; the impact of which should be rigorously evaluated. This further underlines the importance of NASH and the need to implement its recommendations.

There has been some progress; findings of previous rounds of NASH directly informed the NICE quality standards for epilepsy in adults and in children. They were also presented at both the All-Party Parliamentary Working Group on epilepsy and the Northern Ireland Assembly. At more local levels, the results of NASH helped sites develop new care pathways and identified the need for epilepsy nurses.

It was against that background that a third round of the audit, NASH3, took place in 2018, hoping to be able to demonstrate that there had been improvement since the first two audits. This again audited the care and onward referral of seizure-related ED presentations. Over 85% (137) of eligible EDs in hospitals across the UK took part, recording data on over 4,100 presentations.

While there were slight improvements in some care items, the overall message was disappointing in that very little had changed over the eight years between NASH1 and NASH3. Epilepsy care remains inadequate a decade on.

Failings remain both within the emergency setting and in the wider care pathway. There is a pressing need to remove the revolving door that sees patients going back to their local hospital with seizures, in some cases, many times. We need to reconfigure how we manage these patients.

The recommendations in the NASH3 report are wide-ranging and, if the needs of people attending an ED with a seizure are to be met, care must be coordinated across the health service. This includes ambulance services, EDs, hospitals, primary care and epilepsy specialists. Some of our key recommendations include:

● Develop improved clinical pathways to join up services between neurology, emergency and primary care
● Ensure primary care identifies frequent emergency department attendees and seeks advice from neurology or refers patients on appropriately
● Increase education of ED staff, general practitioners and paramedic staff in the
management of patients experiencing a seizure, and in ways to coordinate care
● Fund further research to investigate and help put in place the best treatment pathways for seizure patients during their ED attendance. This should include more information on when to and when not to use brain scans (e.g. CT)
● Ensure useful information is provided about epilepsy and how the person and family can safely manage the condition.

These recommendations cannot be enacted overnight and will take time, but this report is evidence that the journey to improved treatment for those with epilepsy is already long overdue. The full NASH3 report can be found at https://www.nash-audit.com.