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Epilepsy and death

Support workers need to be prepared for the death of a service user, particularly if that person has epilepsy. It can happen suddenly and unexpectedly.

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Causes picture of a thoughtful female care worker

Death in epilepsy is mainly caused by:

  • accidents during seizures
  • status epilepticus
  • sudden unexpected death in epilepsy (SUDEP).

As well as supporting the person’s family, it’s important for everyone in the team to support each other after the death of a service user.

There are charity groups that can help, details of which can be found in the resources section of the full e-learning course.

SUDEP picture of an empty hospital bed

People with epilepsy most at risk of SUDEP (Sudden Unexpected Death in EPilepsy) include those who:

  • have a learning disability
  • have seizures without someone to support them, eg at night
  • don’t comply with their prescribed medication or other guidance
  • are in young adulthood
  • have poor seizure control.

About half of the people who die as a result of SUDEP, and who have a post mortem, show no obvious cause of death.