A blog from Tracy
I have been part of SUDEP Action for eleven years, in that time I have supported hundreds of people bereaved by epilepsy. Often, they are left shocked, traumatised and devastated. An epilepsy death has taken them to the worst possible place, the tragic loss of someone very close to them. Their world has been completely shattered and life will never be the same again. 
'Learnings from supporting traumatic grief in the aftermath of sudden epilepsy deaths'
in Epilepsy & Behavior Journal; ‘Prevent21 Summit – Time to Listen. Epilepsy Mortality; Consequences & Solutions’
There is a deep sense of loss that follows any death, yet with one that is sudden and unexpected, there are added dimensions that are extremely difficult to deal with for the bereaved and they are left with many agonising and distressing questions.
Could anything have been done differently?
Could any action have been taken to prevent this from happening?
This happens at the same time as navigating the unfamiliar, and extremely stressful processes, that happen after a sudden death, including the inquest, with little guidance.
In circumstances when the worst happens, we, SUDEP Action, are here to support the bereaved in any way we can and offer help and support through the unique situations that can follow an epilepsy-related death.
Together with SUDEP Action’s Bereavement Case Worker, Julia Stirling, who joined us in 2018, we provide integrated support through confidential, ongoing and free counselling, as well as advice and guidance on any aspect of an epilepsy-related death, including the inquest process.
We know from our experience that support provided quickly, and soon after a death, can be protective and a vital provision.
Our services are also now signposted in the Ministry of Justice Coroner Services Guide so that more people can gain access to vital support at the earliest opportunity.
Our support service has evolved over time, through working alongside the bereaved, and is tailored to what the bereaved ask for. This can include, advocacy, information, advice and involvement in research, through The Epilepsy Deaths Register.
'Learnings from supporting traumatic grief in the aftermath of sudden epilepsy deaths' in Epilepsy & Behavior Journal; ‘Prevent21 Summit – Time to Listen. Epilepsy Mortality; Consequences & Solutions’
We know that those bereaved are the experts in their own situation, so they, and the support we offer, are at the heart of all we do at SUDEP Action.
This Purple Day, in amongst raising vital awareness of epilepsy and epilepsy safety, we would like to remind you that we are here for you if you need us.
Tracy Cowdry
Dip. Couns Reg. MBACP
Bereavement Services Manager at SUDEP Action
