Support when someone with epilepsy has died

What is SUDEP?

SUDEP is the sudden unexpected death of someone with epilepsy who was previously well and where the post-mortem cannot find another cause of death. SUDEP is rare. It affects around 1 in 1,000 people with epilepsy each year.

We have more information SUDEP and other causes of epilepsy-related deaths.

Getting support after someone dies suddenly

You can contact SUDEP Action if you need any support. This charity works across the UK supporting anyone bereaved by epilepsy. Their services include bereavement support and counselling.

SUDEP Action also provides a casework service that advocates for and works with families navigating the system after a death. This includes investigations, inquests, and NHS reviews and inquiries. Bereaved families and professionals can also be involved in research through the Epilepsy Deaths Register.

What happens when someone dies suddenly?

When someone dies suddenly and unexpectedly a doctor will report the death to a coroner. A coroner is a doctor or lawyer appointed by a local authority to investigate certain deaths.

A death must always be reported to a coroner in England, Wales and Northern Ireland if:

• The cause of death is unknown or uncertain
• The death was violent or unnatural. For example, suicide, accident or drug or alcohol overdose
• The death was in any way suspicious
• The death took place in prison or police custody

This can sometimes include SUDEP and other possible epilepsy-related deaths.

Gov.UK has more information about when a death is reported to a coroner.

Post-mortems

The coroner may order a post-mortem, also known as an autopsy. This is an examination of a body to find out why a person died.

Post-mortems are carried out by a pathologist. This is a doctor who specialises in understanding the nature and causes of disease.

The coroner is required by law to order a post-mortem when a death is suspicious, sudden or unnatural. So, you will not be asked to give permission (consent) to a post-mortem ordered by a coroner. But you can tell them if you have religious or other strong objections.

The coroner must tell you when and where the post-mortem will take place if you ask. You also have the right to be represented at the post-mortem by a medical practitioner. This could be your GP or another pathologist.

The Royal College of Pathologists set the standards that pathologists work to. They have guidelines for pathologists and coroners on the proper autopsy practices for epilepsy-related deaths.

When the cause of death is confirmed

The coroner’s officer will let you know what the pathologist has decided as the cause of death.

You can request a full copy of the report. There may be a fee.

In some cases, the report may be sent to a hospital doctor or GP so they can discuss it with you.

You have the right to contact the coroner if you have any concerns about:

• The quality of the post mortem
• The cause of death given
• The pathologist who did the post mortem

The Human Tissue Authority have more information about post-mortems and your rights.

Registering a death

You will not be able to register the death until the coroner’s investigations are complete and a certificate has been issued.

You may need to wait to register a death if an inquest is needed. You can ask the coroner for an interim death certificate so you can start making funeral arrangements.

Citizens Advice has more information about arranging a funeral.

Inquests

An inquest is a legal inquiry into a death. Only a coroner can order an inquest. Relatives do not have the right to insist on one. But you can write to the coroner and ask for one.

An inquest is held in public if:

• The death was violent or unnatural
• Took place in prison or police custody
• The cause of death is still uncertain after a post-mortem

Relatives may attend an inquest and ask questions. Legal aid may be available for legal advice on inquests.

It may be weeks, months and sometimes longer before the investigation ends or an inquest is held.

The inquest should:

• Provide more information about how and why the death took place and
• Whether anyone else was responsible

In some cases, a criminal prosecution may happen later.

The Coroners’ Courts Support Service (CCSS) offers support to people going to an inquest.

Other investigations

There may be other processes happening at the same time as the above. For example,  a review by the NHS or other organisation involved in the care of the person who has died.

SUDEP Action can give you support with investigations. 

More support and information

SUDEP Action

SUDEP Action aims to increase awareness of epilepsy risks and tackle all epilepsy deaths, including Sudden Unexpected Death in Epilepsy (SUDEP)

Tel: 01235 772 850
Email: support@sudep.org

Child Bereavement UK

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: helpline@childbereavementuk.org

Citizens Advice

This national charity and network of local charities offer confidential advice online, over the phone, and in person, for free.

They have more information about what to do after a death.

Cruse Bereavement Support

Cruse Bereavement Support offers support, advice and information when someone dies.

Tel: 0808 808 1677
Email: helpline@cruse.org.uk

The Coroners’ Courts Support Service Helpline (England and Wales)

The Coroners’ Courts Support Service is an independent voluntary organisation whose trained volunteers offer emotional support and practical help to bereaved families, witnesses and others attending an inquest at a Coroner’s Court.

Telephone: 0300 111 2141
Monday to Friday, 9am to 7pm
Saturday, 9am to 2pm

Gov.uk

The UK government can sometimes help with funeral costs in certain circumstances.

Samaritans

The Samaritans connect people in crisis with trained volunteers who will always listen.​

Helpline: 116 123 (Monday to Sunday at any time)
Welsh Language Line: 0808 164 0123 (Monday to Sunday 7pm to 11pm)
Calls to Samaritans are free.
There are many ways to contact a Samaritan.

Support after Suicide Partnership

The Support after Suicide Partnership provides practical information to help anyone affected by suicide find support.

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.