After a death of someone either with epilepsy or who was experiencing seizures
It is important that the bereaved are signposted to specialist support early, and do not have to distinguish between different organisations or explain what has happened over and over again. Generic bereavement support cannot provide what families need in the case of epilepsy-related deaths.
Instead what is needed is expert advocacy and casework integrated with specialist bereavement support which is what SUDEP Action aim to provide. The timing of this support is extremely important and should be provided as soon after the death as possible (whether or not the death has been confirmed as epilepsy-related or SUDEP).
SUDEP Action is the only UK charity specialised in supporting and involving people bereaved by epilepsy, including SUDEP (sudden unexpected death in epilepsy).
Our tailored bereavement service helps and empowers people after someone with epilepsy has died, through specialist bereavement support, counselling and casework, including support through investigations and inquests. The support we provide is open-ended and can be accessed at any time after the death.
Further information you may find useful:
- After a death - specialist bereavement services.
- Epilepsy Deaths Register - an online research platform to help learn lessons from epilepsy deaths (both the bereaved and health professionals can contribute)
- Cowdry, T. Stirling, J. Learnings from supporting traumatic grief in the aftermath of sudden epilepsy deaths, Epilepsy & Behavior,
Volume 103, Part B, 2020, 106416, 1525-5050, https://doi.org/10.1016/j.yebeh.2019.07.017.
- The SUDEP and Seizure Safety Checklist, a free, award-winning clinical tool to support, monitor and record epilepsy mortality risk discussions.
- EpSMon is the NHS Innovation Accelerator supported epilepsy app, is also freely available to help your patients in self-managing their epilepsy in between appointments.
- Patient & professional leaflets available freely should you like to order any for use in consultations.
- 30 minute 'SUDEP and Seizure Safety' e-learning course with the RCGP for Health Professionals
- BMJ ‘Quicktips’ session on SUDEP
If you would like to receive updates about supporting families after an epilepsy/SUDEP death, and would like the latest information, free resources & research from SUDEP Action (via our quarterly clinician enews), please leave your details below: