Support with investigations
Support with investigations
You deserve explanations and answers
Someone you know and love has died because of epilepsy. Right now you may feel shocked, isolated, unable to believe what has happened or how to manage the processes you have to go through. We can help.
After a sudden death, an investigation starts immediately. The coroner (or Procurator Fiscal in Scotland) is involved and there is usually a post-mortem examination. But it may be weeks, months and sometimes longer before the investigation ends or an inquest is held. There may be other processes happening in parallel: a review by the NHS or other organisation involved in the care of the person who has died.
Our Service
We’ll help you fight for answers
We know what it’s like to face systems you may know nothing about in the depths of grief and trauma; but which you need to engage with to get answers. You might have to fight for answers, and to do this means understanding how the system operates, what your rights are and how your voice can be heard. We can help with this and will work with you to get accountability where there are lessons to be learned.
Concerned about an investigation?
Investigating epilepsy deaths is important
Through our work and research, we know that deaths in epilepsy are still underestimated so it’s vital that they are recognised and properly investigated. The Royal College of Pathologists’ guidelines for the investigation of epilepsy deaths is an important resource and recognises SUDEP Action’s specialist support. They signpost to us for the Epilepsy Deaths Register (EDR). Here, bereaved people and clinicians can provide information after a death. The EDR is a vital resource for researchers working on the prevention of deaths.
Julie’s story
Julie died of SUDEP, aged 55. Her family had to fight for her cause of death to be recognised.
Also see
Speaking with others when you feel you’re able to
Those who have gone never leave you
Leave a tribute, share a memory
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
