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Research Portfolio

GRANT TITLE:

ERRE – Epilepsy risk reduction & e-education

GRANT TYPE:

INNOVATIONS IN HEALTHCARE URGENT RESEARCH GRANT

grant amount:

£49,618 over 18 months Awarded in 2020

lead investigator:

Dr Rhys Thomas

Co-Investigators:

-Jane Hanna (SUDEP Action)
-Dr Rohit Shankar (Cornwall Partnership NHS Foundation Trust)
-Samantha Ashby (SUDEP Action)
-Prof Michael Norton (North East Ambulance NHS Foundation Trust)
-Dr Ela Akay (Newcastle Upon Tyne Hospitals NHS Foundation Trust)
-Mr Mustafa Sultan

institution:

Newcastle University

Background

The immediate and wholesale transition from face-to-face epilepsy consultations is the most significant change to epilepsy services since the advent of specialist nurses. We are concerned that telephone reviews may not help us pick up safety-concerns that we have become used to identifying when in person.

"The COVID-19 pandemic changed epilepsy clinics overnight. These changes had no risk assessment prior to implementation; it is essential that new ways of working do not disadvantage certain patient groups and that we embed safest practice wherever possible. Can using a risk-assessment tool every time help keep people safer?

The Study

We plan to map the impact of bespoke risk-management tools for people with epilepsy. We will ‘prescribe’ an educational video about risks to 800 people with epilepsy who will then have a telephone call from our research nurse delivering the ‘SUDEP and Seizures Safety Checklist’. After six months, we will call them again and measure their risk level.

Risk conversations must also happen outside of epilepsy clinics. We will create a series of videos aimed at specific vulnerable groups to ensure that people with epilepsy have the opportunity to hear about epilepsy safety.

Significance

The aim is to introduce pre-existing gold standard tools, to the widest possible patient group and design new ways of communicating risk, at scale, that suits modern health-care delivery while assessing impact.