SUDEP Action

Making every epilepsy death count
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NIHR - Person Centred Risk Communication

This research project is a collaboration between SUDEP Action, the University of Exeter, Cornwall Partnership NHS Foundation Trust & UXClinician. This project, funded by NIHR (the UK's largest health research funder), will focus on exploring person centred risk communication for people with epilepsy, to understand what works best for them and their clinicians.

The project will produce guidance for clinicians about how to discuss risk in clinical consultations for People With Epilepsy (PWE), with the hope that by supporting positive risk communications, there will be a positive impact on how epilepsy risks are managed.

Why is this needed? 

21 people with epilepsy die each week and at least 42% could be prevented.
Sudden Unexpected Death in Epilepsy (SUDEP – when someone with epilepsy dies and no other cause can be found) is a leading cause. Other causes include accidents, drownings, suicides, & deaths from Status Epilepticus (a seizure lasting a long time, or many seizures where the person stays unconscious in-between them). 
There are risk factors linked to epilepsy deaths which many people with epilepsy are not told about. Yet some can be reduced if known about. Some people with epilepsy are not told about the risks linked to premature epilepsy deaths.

Reasons for not communicating risks vary from:

  • clinicians being unaware
  • fear of frightening patients
  • time pressures
  • these conversations being seen as others’ responsibility

Epilepsy guidelines recognise risk communication as important, a view supported by people with epilepsy, clinicians, researchers and those bereaved by epilepsy. Many bereaved people tell us they were unaware of epilepsy risks or SUDEP until after their relative died. SUDEP Action raises awareness of this issue and work to prevent epilepsy deaths. The Charity supports this research and will consult with people with experience of living with epilepsy by creating a ‘expert patient group’ to help inform and shape the research and its outcomes.

Risk levels differ between individuals and change over time, making regular risk checks important. If clinicians and patients discuss, understand & take action, risks can be reduced. Information is available from research and charities to support positive risk management.

However, a common question from clinicians is ‘HOW do I actually HAVE the conversation?’. Clinicians want specific advice on having positive, impactful conversations.

Awareness of the importance of discussing epilepsy risks/SUDEP is increasing, but HOW to have conversations with positive impact is unclear and under-researched. With no national guidance on this, clinicians decide; meaning the impact on their patient’s risk management also varies.

What we aim to do:

  • Identify what ways of communicating show best practice in epilepsy risk discussions
  • Identify how both clinicians and PWE experience risk discussions 
  • Identify what PWE and their clinicians find less helpful during risk discussions
  • Develop guidelines and/or training resources to support better epilepsy risk communications which have a positive impact on risk management/reduction and wellbeing

 How we plan to do this:

By looking at risk conversations with a variety of clinicians and their patients in different settings, we will consider:

  • How do risk conversations differ?
  • What language is used to discuss this potentially ‘scary’ topic?
  • What do patients think about this information and how they’re told?
  • Does the conversation affect how patients think about their risks/choices?
  • How can conversations better empower clinicians and patients to reduce risks?

Conversations will be recorded, and themes/patterns analysed using ‘Conversational Analysis’ (a way to study language used in conversations). Views from the clinicians and patients involved will also be collected (by follow up phone call/questionnaire). Analysis will involve the research team, expert patient group, and any willing clinicians and patients. Repeated analysis sessions will get agreement on best ways to communicate risk. Learning from clinicians and patient experience will also help identify best practice examples. 

SUDEP Action will lead on creating and publicising information and training materials for clinicians to improve risk conversations. Which we hope encourages positive patient risk management which could save lives.

Who is involved in the research:

Main research team:

Dr Cordet Smart (Research lead, University of Exeter)
Dr Rohit Shankar MBE, Consultant Neuropsychiatrist, Cornwall Partnership NHS Foundation Trust.
Dr Craig Newman, Director, UXC.
Sammy Ashby, Deputy Chief Executive, SUDEP Action

As part of the project we will also be working with 4 other clinical teams to collect the data, 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)
Dr Arjune Sen – Consultant Neurologist at Oxford University Hospitals, and Head of the Oxford Epilepsy Research Group
Professor Hannah Cock – Consultant Neurologist at St Georges, London and Chair of the Education Committee of European Academy of Neurology (EAN)

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 to te SUDEP Action newsletter here  -