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of everyone affected by epilepsy

Support when someone with epilepsy has died

If someone you know has died from an epilepsy related death, you might be looking for support and information. We know that everyone’s experience is different and there is no right or wrong way to grieve. There are many different tools and organisations available to support you.

If you would like to talk to someone about epilepsy you can call the Epilepsy Action Helpline on 0808 800 5050.

SUDEP Action

SUDEP Action exists to increase awareness of epilepsy risks and tackle all epilepsy deaths, including Sudden Unexpected Death in Epilepsy (SUDEP).  With over 20 years’ experience, it is the only UK charity with specialist expertise in supporting and working alongside anyone bereaved by epilepsy. The free support service is tailored, led by what the bereaved need and want - which can include advocacy, information, advice and involvement including in research through The Epilepsy Deaths Register. SUDEP Action can assist and empower the bereaved in their interactions with the coronial service and other agencies, which can be combined with ongoing support.

support@sudep.org or 01235 772852
www.sudep.org
 

Child Bereavement UK

Supports families 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

Cruse Bereavement Care

Offers support, advice and information when someone dies.
Tel: 0808 808 1677
Email: helpline@cruse.org.uk
Website: cruse.org.uk

Gov.uk

The UK government can sometimes help with funeral costs in certain circumstances.
Website: gov.uk/funeral-payments/eligibility

GriefChat

GriefChat is an online chat service that is part of Professional Help Limited. It provides online emotional support, access to trained bereavement counsellors and referral into other specialist bereavement services. Find out more.
Website: www.griefchat.co.uk

Help is at Hand

The Support after Suicide Partnership has produced 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

The Epilepsy Deaths Register

The Epilepsy Deaths Register provides researchers with anonymised information on epilepsy deaths. You don’t need to be related to the person who has died, and you can register their death at any time.
Website: epilepsydeathsregister.org

Turn2Us

Provides practical help to people who are struggling financially.
Website: turn2us.org.uk/your-situation/bereaved

Winston’s Wish

Supports children and young people after the death of a parent or sibling.
Tel: 0808 8020 021
Email: ask@winstonswish.org
Website: winstonswish.org

Code: 
F006.06
Event Date: 
Thursday 31 March 2016

Epilepsy Action would like to thank Dr Heather Angus-Leppan, consultant neurologist and epilepsy lead, Royal Free London NHS Foundation Trust, for her contribution to this information.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated August 2019
    To be reviewed August 2022

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