In our last Research Blog of the year, we hear from our final Innovations in Healthcare awardee, Dr Rhys Thomas. Dr Thomas’s project aims to improve access to information about sudden unexpected death in epilepsy (SUDEP), to help more people have conversations about SUDEP risk. Here he tells us how this team aims to increase awareness of SUDEP by rolling out an award-winning educational app and producing information videos featuring people with lived experience of epilepsy.
At the turn of the year, we all had high hopes for 2020; it feels so long ago. Everyone in the epilepsy community agrees that there is still plenty of work needed to ensure that clinical care for people with epilepsy is world-class, and at the beginning of the year, this need was recognised. A comprehensive ‘toolkit’ (RightCare: Epilepsy Toolkit) was developed involving Epilepsy Action, SUDEP Action and Young Epilepsy.
Before we had a chance to implement any of the key messages of the toolkit, the COVID-19 pandemic halted our plans and within weeks we were supervising the largest ever change to how we deliver epilepsy care. The challenge was met in different ways across the UK but essentially, we became a telephone-based service and some of our epilepsy specialist nurses, the bedrock of most epilepsy services, were redeployed to inpatient COVID-fighting roles.
What will this project do?
The COVID-19 pandemic changed epilepsy clinics overnight. These changes had no risk assessment prior to implementation; so, it is essential that new ways of working do not disadvantage certain patient groups and that we embed the safest practice wherever possible. Our project will trial two methods of looking at epilepsy risks, hoping to minimise them.
Checklist and App
We have an award-winning, free to use ‘SUDEP and Seizure Safety Checklist’ app which has been designed by a partnership of UK researchers, clinicians and SUDEP Action. The Checklist is evidence-based, focusing on nineteen risk factors, including twelve modiﬁable risks. We need to demonstrate whether it is feasible and possible to roll the Checklist app out to everyone seen in the clinic, rather than just for targeted patients. We know that everyone with epilepsy carries a SUDEP risk. We aim to use the Checklist with 800 adults with epilepsy and then contact them after six months to identify whether their personal levels of risk have changed following this intervention.
We will design modern videos that convey a patient-friendly way of learning about epilepsy risks. Patient advocates and people connected to SUDEP Action with lived experience will be involved to ensure that our messages make sense beyond the clinic room. It is our hope that this will allow our conversations about SUDEP risk to be heard by the individual’s wider family and ensure these conversations are easier to have. As well as videos aimed at people following a first seizure, we will create a series of videos aimed at people with epilepsy who are under-represented in epilepsy clinics. Amazingly there are a large number of people who may attend other services – such as drink or drug programmes, emergency care, or maternity services – but are very infrequently seen in the clinic. We hope these targeted videos will help democratise access to risk conversations, both allowing groups at greater risk to hear important lessons and to encourage clinicians outside of current services to broach these conversations with more confidence. Following extensive community feedback, these videos will be made available for all to use.
We owe it to people living with epilepsy that, when we enter a post-pandemic world, we will take the very best of what we trialled in 2020 and we will ‘build back better’. We hope that this project will help us to do just that, as well as including brave new steps to reduce epilepsy risks.
-Dr Rhys Thomas
Read more about Dr Rhys Thomas’ project ‘ERRE – Epilepsy Risk Reduction & E-Education’ here.