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Epilepsy Deaths

Although epilepsy related deaths are rare, about 1200 people die from Epilepsy each year in the UK. Around half of these deaths are SUDEP (sudden unexpected death in epilepsy).

The Causes of Epilepsy-Related Deaths are:

  • SUDEP.
  • Accidents.
  • Status Epilepticus (where there is evidence of a seizure or seizures lasting 30 minutes or more).
  • Suicide.

SUDEP Deaths

SUDEP is when a person with epilepsy dies suddenly and the post-mortem fails to establish any other cause of death. Most epilepsy-related deaths are from SUDEP. In the UK it is estimated that there are about 500-600 SUDEP deaths each year. It is considered to be more common in young adults, in people with epilepsy who are not seizure free and in people who have seizures at night.

Causes

Several different mechanisms may be involved, and there may be no single explanation for all cases. The two primary explanations that are most likely are:

  • Cardiac: If there is an electrical storm in the brain it may spread to areas that control heartbeat. This could cause a fatal cardiac event.
  • Respiratory: An electrical storm may spread to the part of the brain responsible for respiration. It is known that many people who experience seizures stop breathing for a significant time.

Investigation of sudden deaths in a person with epilepsy

All sudden unexpected epilepsy deaths should be subject to post-mortem to ensure that other possible causes of death are eliminated. The Royal College of Pathologists provides guidance on investigation of sudden deaths in people with epilepsy. A copy is available from the Royal College website:

guidelines on autopsy practice

Sudep Action are advised by a panel of experts and can provide information that may help with understanding the cause of death.

*Figures can vary according to source but figures quoted are a representative

I've so many questions

People have many questions after an epilepsy related death, regarding the circumstances leading up to it or about what will happen next.

It is difficult to answer certain questions without knowing the individual circumstances, but below are some of the questions that our support team may be able to help you with. Please contact them on 01235 772852 or email: support@sudep.org It may be helpful to you to understand a little more about what has happened and why.

  • Why is there going to be an inquest?
  • What investigations will there be?
  • How long will I have to wait?
  • I ’m not sure that they were taking their medication properly what should I do?
  • How can it be epilepsy related, they hadn’t had a seizure for such a long time?
  • How can it be epilepsy related, there was no evidence of a seizure?
Investigations

It is important to understand the correct cause of death in order to exclude any genetic conditions. If there are no obvious signs of cause of death or if the death was unwitnessed and the person had epilepsy, then SUDEP (sudden unexpected death in epilepsy) needs to be considered.

The Royal College of Pathologists produce specific guidelines for investigating the death of a person with epilepsy and families should ensure that the coroner’s officer is aware of them.

The inquest often takes place quite some time after the death; some have been known to take over a year. However, the majority take place within 3 to 6 months. We are able to support you during that difficult time and answer some of your questions.

Contact our support team: Tel: 01235 772852 Email: support@sudep.org

Our service

We have access to a team of medical experts who specialise in epilepsy and epilepsy related deaths including SUDEP. We are therefore best placed to provide information, support and expert opinions in relation to the cause of death. We are able to ask experts to review the post-mortem findings and highlight any questions that may need answers. However, you would need to seek the permission of the coroner before sharing the post-mortem with a third party.

The coroner

The coroner is an independent judicial officer acting on behalf of the Crown. He or she is appointed to find out the cause of death and the circumstances leading up to a person’s death. They may be either a lawyer, with or without a medical qualification, or a medical professional who has undergone training in law to fulfil the requirements of the role.

The coroner’s officer

The coroner’s officer provides a point of contact for the deceased’s family, as well as carrying out the day-to-day administration of the inquest investigation on behalf of the coroner. Contact will be made with the family to ensure any concerns are clarified and relevant information is gathered. This can include information which you feel may have contributed to the cause of death. The coroner’s officer will then remain in regular contact with the family or next of kin.

Post-mortem

In most cases of deaths reported to the coroner, a post-mortem, also known as an autopsy, will be carried out. This is the examination of a body after death. Post-mortems are carried out by pathologists, who are doctors specialising in the diagnosis of disease and the identification of the cause of death. If a post-mortem is ordered by a coroner, it must take place by law – whether the deceased’s next of kin has given their agreement or not.

The Inquest

An inquest is a fact finding process, it is held in order for the coroner to find out the cause of death and to give the correct verdict. The four main things that the coroner needs to understand are, who died, where, when and how.

If there are to be witnesses called, the coroner’s officer would be able to inform you of the order that they would be called and you would be able to ask questions of the witnesses when indicated by the coroner. The pathologist often provides his or her evidence early in the proceedings and will highlight the main findings along with any important points, before answering any questions from the coroner or the family.

The coroner’s court is open to the public and to members of the media. Local newspapers are most often represented on the day. Journalists may approach you after the inquest to ask questions, but you only need to speak to them if you feel up to it. However, you may want to write something about the person who has died, to say something about them, their life and how they will be missed, as otherwise the story will only contain what was said at the inquest.

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