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Trust Wins £150,000 Grant Share To Support Epilepsy Patients

Trust Wins £150,000 Grant Share To Support Epilepsy Patients

Date of release: 29 October 2020

The Royal Wolverhampton NHS Trust has been awarded a share of a grant of over £150,000 to improve communication with its 4,500 epilepsy patients.

The Trust will share £151,199 of funding from the National Institute for Health Research (NIHR) as part of a collaboration between SUDEP Action (Sudden Unexplained Deaths in Epilepsy), the University of Exeter, Cornwall Partnership NHS Foundation Trust and UXClinician.

The project involves recording epilepsy risk communications across four sites – RWT, Oxford University Hospitals NHS Foundation Trust, St Georges University Hospitals NHS Foundation Trust in Tooting, London and the Institute of Neurology, University College London.

Phil Tittensor, Consultant Nurse for the Epilepsies at RWT, will help co-ordinate the organisation’s response.

This project will focus on exploring person-centred risk communication for people with epilepsy, to understand what works best for them. It will produce guidance for clinicians about how to discuss risk in clinical consultations for people with epilepsy (PWE).

Mr Tittensor, who is also Chair of the Epilepsy Nurses Association (ESNA), said: “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,” added Phil.

The project aims to:
  • 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
They 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. 


Notes to Editor

  • 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 the SUDEP Action newsletter here – https://sudep.org/contact-us
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