SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

A blog from Tracy

26th Mar 2020
"The service that you, SUDEP Action, offer, is worth its weight in gold. I will always be grateful that I was able to get help from you, and the fact that it can continue as long as I need it, is wonderful." – A bereaved supporter 

 

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. 
SUDEP Action has worked hard for nearly 25 years to support the bereaved and is dedicated to raising awareness of epilepsy risks and tackling all epilepsy deaths. Our SUDEP Action badge represents the five bereaved women who started the charity in 1995, and the many dedicated people who continue to support SUDEP Action - to make every epilepsy death count. The five colours reflect the key five strands of the charity’s work, and the linked arms are a simple but powerful symbol of our unending support.
‘There was no time to prepare and no time to say goodbye. They thought they had all the time in the world to say the things they wanted to say.’ 

'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.  

 

‘[SUDEP Action] was set up by the bereaved for the bereaved and has developed...through more than twenty years’ experience of supporting bereaved people’  

'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. 

 

If you would like to contact myself or any of our support team, please call 01235 772852 or email [email protected] and we will help in any way we can. 

 

Tracy Cowdry  

Dip. Couns Reg. MBACP 

Bereavement Services Manager at SUDEP Action