We exist to improve the lives
of everyone affected by epilepsy


SUDEP Action and the epilepsy deaths register

In this section:

SUDEP Action is an organisation that:

  • Provides information on sudden unexpected death in epilepsy
  • Offers support when someone has died
  • Involves people to help make change happen
  • Sponsors research and education to prevent future deaths
  • Captures data across the UK through the epilepsy deaths register

The epilepsy deaths register

The epilepsy deaths register has the potential to save lives and improve services for people with epilepsy. Researchers, doctors, government and local health and social services urgently need information if they are to:

  • Reduce epilepsy-related death
  • Decide where best to put funding to improve services for people with epilepsy
  • Improve public awareness of epilepsy-related risk, including sudden unexpected death in epilepsy (SUDEP)
  • Improve epilepsy advice and treatment plans
  • Identify and prioritise new research
  • Improve public awareness of epilepsy-related risk, including SUDEP

The epilepsy deaths register is a central reporting system where information about any epilepsy-related death can be registered. If you have been affected by an epilepsy-related death you can contact the register .

Help and support for people who have been affected by an epilepsy-related death

If someone you know has died from an epilepsy-related death, you are likely to feel shocked, confused, isolated and not able to take in what has happened. You might have questions that need answering, or you might need to talk about what has happened. These organisations may be able to help you:

SUDEP Action
SUDEP Action’s support team can help you to understand:

  • The inquest procedure
  • The investigations
  • What is going on for you emotionally

Tel: 01235 772 852
Email: support@sudep.org
Website: sudep.org

Cruse Bereavement Care
Cruse Bereavement Care will support you after the death of someone close.
Tel: 0844 477 9400
Email: helpline@cruse.org.uk
Website: cruse.org.uk

Help is at Hand
The Suicide Bereavement Support Partnership (SBSP) produce a document called Help is at Hand, which is an information guide for anyone bereaved by suicide.
Website: supportaftersuicide.org.uk/help-is-at-hand
SBSP can be contacted through an online form on their website

Child Bereavement UK
Support for families, parents and carers when a baby or child of any age dies or is dying, or when a child is facing bereavement.
Tel: 0800 0288 840
Email: support@childbereavementuk.org
Website: childbereavementuk.org/support

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Event Date: 
Thursday 31 March 2016 - 15:22

Epilepsy Action would like to thank Consultant Neurologist Dr John Paul Leach of Southern General Hospital Glasgow for his contributions to this information. He has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated April 2016
    To be reviewed April 2019

There are no comments yet. Be the first to comment...

e-action newsletter

Subscribe to our e-action newsletter and stay informed

Subscribe to e-action newsletter feed