SUDEP Action

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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.

Dr Cordet Smart commented: “Having the opportunity to lead on a project that could have real world impact for people with epilepsy is both exciting and humbling.  I feel lucky to work with SUDEP action who work so closely with people with epilepsy, their families, and bereaved families.  This has enabled me to really connect with how important communication of epilepsy is. Conversation Analysis is a method of really understanding how communication works, and I am really hopeful that it will provide us with insights into how clinicians can best use language to have helpful conversations with their patients that will impact on people with epilepsy and their lives.”

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.

Sammy Ashby commented, “SUDEP Action are delighted to be involved in this crucial project, and to have it recognised by NIHR as being important shows how recognition is increasing of the need to tackle epilepsy deaths through improved risk communication. With 21 epilepsy-related deaths each week in the UK, and nearly 50% of them thought to be potentially avoidable, action needs to be taken now to save these young lives.This project could bring us one step closer and will hopefully lead to better conversations between clinicians and people with epilepsy about risks. We know that knowledge saves lives, so now is our chance to prove it.”

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
​Dr Rohit Shankar commented: “The quality of communication is the bedrock of good clinical practice. However, there is little work and evidence on how and what to communicate especially in sensitive issues such as discussing risk of harm in epilepsy. I am delighted that CFT and I are not only part of this innovative national research but leading it clinically. We hope this study will contribute to improving outcomes for people with epilepsy significantly.”
Phil Tittensor commented, “The communication of risk and the ways to mitigate that to keep people safe needs to be at the core of epilepsy management. However, unfortunately, it’s often not well done and patients are not clear about red flags for risk and what to do about them. This important project aims to shed light on why risks associated with epilepsy are poorly communicated, and give clinicians the tools to improve their practice, thereby saving lives,”

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  -