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.
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.
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.