Sudden unexpected death in epilepsy (SUDEP)

This information is for prison staff dealing with prisoners with epilepsy. Further information on sudden unexpected death in epilepsy is on our website.

Risk of dying from epilepsy

Many people know you can die as a result of an accident connected with epilepsy, such as drowning. Not everyone realises you can die from epilepsy itself.

One cause of death is ‘status epilepticus’. This is where a seizure lasts for 30 minutes or more, or where one seizure follows another without recovery between. If the person doesn’t get emergency treatment, eventually the lack of oxygen to the brain and the stress placed on the major organs can lead to death.

Another cause of death is sudden unexpected death in epilepsy (SUDEP). This is where a person with epilepsy dies suddenly and no other cause of death is found.

People with epilepsy tend to experience depression more than people without epilepsy and, unfortunately, are also shown to be at higher risk of committing suicide than the general population.

Sudden unexpected death in epilepsy (SUDEP)

If a person with epilepsy dies suddenly and no obvious reason can be found after a post-mortem examination has been carried out, it’s called sudden unexpected death in epilepsy (SUDEP).

There are around 500 cases of SUDEP in the UK every year. Some of your prisoners with epilepsy will be at more risk of SUDEP than others. It is important to consider this when thinking about their safety. For example, would it be safe for them to be in a single cell, or in isolation?

Not everyone who has epilepsy knows about SUDEP and it can be frightening to hear about it for the first time. So this is a subject for their doctor or epilepsy nurse to discuss with them.

Risk factors for SUDEP

• being a young adult, particularly male
• having brain damage
• not taking anti-epileptic drugs as prescribed; taking more than one type; frequently changing doses
• poor seizure control
• having seizures during sleep
• having tonic-clonic (previously called grand mal) seizures
• being alone at the time of the seizure