SUDEP Action

Making every epilepsy death count
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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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