Learnings from supporting traumatic grief in the aftermath of sudden epilepsy deaths.

The majority of epilepsy deaths are sudden, unexpected, and most prevalent among young adults. The number of people affected by a death can be high, as extended family and social networks survive. Those bereaved are at risk of developing traumatic and complex grief reactions and need access to specialist bereavement support as soon as possible after a death. It helps bereaved families to know how the death happened. They want lessons to be learnt and deaths to be prevented in future. The process of investigation into the death - which can contribute to these aims - may alienate families if not handled well and cause further trauma. Loss of participation by those bereaved can lead to suboptimal investigation and missed opportunities for learning and prevention. With integrated specialist emotional and practical support, tailored to the individual, families can be empowered to participate as they choose, with those working to understand and prevent epilepsy deaths. SUDEP Action (formerly Epilepsy Bereaved) is a charity which provides specialist services for people bereaved by epilepsy. It is the only organization which delivers these services globally. It was set up by the bereaved for the bereaved and has developed its model through more than twenty years' experience of supporting bereaved people. If the bereaved are signposted to specialist support of the sort SUDEP Action provides as soon as possible after a death, that early intervention can help to alleviate the effects of traumatic bereavement and restore an element of control and choice as they navigate what is to come. Early intervention by signposting to skilled experienced epilepsy death-related bereavement services could be vital.