Health grant awarded for potentially life-saving epilepsy risk communication research
SUDEP Action, as part of a team of leading researchers, have been awarded a grant from the UK’s largest health research funder, the National Institute for Health Research (NIHR) to investigate how best to have epilepsy risks discussions, that will have a positive and potentially life-saving impact.
In the UK, there are more around 600,000 people with epilepsy (1 in 103 people). At least 87 people are diagnosed with epilepsy every day in the UK. However, 21 people with epilepsy die each week in the UK, many of them are young and otherwise healthy. Over 50% of epilepsy deaths are potentially preventable with better access to services and improved risk communication - which emphasises the need for effective discussions about epilepsy safety.
There is significant research showing the importance of communicating information about the risks linked to epilepsy deaths, including those linked to SUDEP (Sudden Unexpected Death in Epilepsy – when someone with epilepsy dies suddenly & prematurely and no cause of death can be found).
Evidence-based tools are already freely accessible to support these vital conversations. However, there is limited research into how best to actually have these conversations, so that they make a difference and help people with epilepsy to positively take actions to reduce their risks.
This study aims to identify and showcase best practice examples, to support future clinical discussions (& patient involvement in these) and produce guidelines exploring how best to hold conversations about risk. The NIHR have awarded the research team £151,199.00 to carry out this vital research.
Dr Cordet Smart (Research lead, University of Exeter), is an expert in analysing the language used in conversations, will be heading up this exciting project. Supported by a research team including:
- Dr Rohit Shankar MBE, Consultant Neuropsychiatrist, Cornwall Partnership NHS Foundation Trust.
- Dr Craig Newman, Director, UXC.
- Sammy Ashby, Deputy Chief Executive, SUDEP Action (Lead Patient & Public Involvement)
Both Dr Shankar and Dr Newman already work closely with SUDEP Action as part of the SUDEP & Seizure Safety Checklist and EpSMon projects.
The project, starting in summer 2020, will record epilepsy risk discussions between clinicians and their patients. These recordings will then be analysed using a method called ‘conversational analysis’ to find themes and to identify best practice. The clinicians and people with epilepsy will also have a follow up interview/questionnaire which will help support the analysis.
The research team will then identify the best methods for sharing their findings with the epilepsy community to enable more effective, positive epilepsy risk communication.
The project will work with four different clinical teams, led by:
- Professor Matthew Walker - Consultant Neurologist at University College London, and President of the International League Against Epilepsy (ILAE) British Branch
- Phil Tittensor - Consultant Nurse for the Epilepsies at The Royal Wolverhampton NHS Trust, and Chair of the Epilepsy Nurses Association (ESNA)
- Professor Hannah Cock – Consultant Neurologist at St Georges, London and Chair of the Education Committee of European Academy of Neurology (EAN)
- Dr Arjune Sen – Consultant Neurologist at Oxford University Hospitals, and Head of the Oxford Epilepsy Research Group
A core group of people living with epilepsy will also be involved as a group to support the project. SUDEP Action, as part of their role in this project, will be sharing updates and findings of the research and will look to engage with their supporters as part of this work so the view of those bereaved by epilepsy are also represented.
See the project’s main study page for further information
To keep up to date on progress with this research, and to hear more about SUDEP Action’s other work on tackling epilepsy deaths and providing specialist support for those bereaved by the condition, sign up here - https://sudep.org/contact-us