SUDEP Action

Making every epilepsy death count
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People with Epilepsy in a rural population – what can be done to reduce this?

 

A study into Emergency Department attendances in a rural community has highlighted a  significant need for action to be taken to help reduce the epilepsy burden on these services and to improve the self-management of people frequently engaging with them.

There are approximately 100,000 epilepsy-related Emergency Department attendances each year in the UK, with 40,000 of these ending in people being admitted to hospital. This makes up 1.4% of all Emergency Department admissions, costing the NHS over £56 million a year. Those who are not admitted to hospital (60%) are seen as clinically unnecessary, so a visit potentially could be avoided reducing the burden on and cost to the NHS with improved self-management and community care interventions for these high-frequency attenders.

Looking at a cohort of 155 people with epilepsy who attended a local Emergency Department over a 12 month period, the research recruited 46 people to take part in a questionnaire about their condition. The questionnaire included validated, generic and epilepsy specific questions which participants completed  on aspects such as seizure frequency, quality of life, stigma, comorbidities and knowledge.
Key findings:

•    ED admissions could potentially be reduced if ‘alternate strategies to manage emergencies are in place’
•    The mean age of those in the study was 43.5 years, with 65% of the participants being male
•    Anxiety was flagged as an important factor ; suggesting improved preventative strategies, counselling and self-management should take this into account
•    Developing confidence for ED attendees in self-managing their condition should be considered

The research suggest that people with epilepsy who regularly present at Emergency Departments may benefit from specific interventions to assist them in the self-management of their condition. However regional variations and variations between epilepsy populations frequently attending Emergency Departments would need to be considered to provide a person centred approach. 

This research is the final outcome from the Epilepsy Life Project which was pump primed by SUDEP Action and Kt’s Fund back in 2008, in order to work toward preventing future epilepsy deaths in the South West of England. The project is ongoing and supported by SUDEP Action through the work of the SUDEP and Seizure Safety Checklist and EpSMon. These tools support both clinicians and their patients in managing their epilepsy. They prompt patients to be aware of & discuss with their clinicians whether they have needed to use emergency services due to their epilepsy, and have the potential to address this area of need within Emergency Departments, improving epilepsy outcomes in both this group of patients and the general epilepsy population.