SUDEP Action

Making every epilepsy death count
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Sam was a veteran who served in the British Army until he was medically discharged after sustaining a head injury during an exercise. This resulted in severe epilepsy. Sam had many difficulties after leaving the Army because of the frequent and severe epileptic fits that he suffered.

Sam was a young man in his thirties when he died suddenly. Following a post-mortem, his death was recorded as Sudden Arrhythmic Death Syndrome (SADS). The SADS finding allowed the Veterans Agency to declare that Sam’s death was not attributable to his head injury. 

I did more research and sought out the specialist support service at SUDEP Action. Our families believed that Sam’s epilepsy was too readily overlooked so with SUDEP Action’s help we appealed against the findings. SUDEP Action provided us with two documents that became key elements of the appeal and were so convincing that the decision was changed without us having to go through a stressful formal appeal.

The overview of SUDEP document was a concise, but comprehensive, summary of SUDEP and the reasons why the sudden death of someone with epilepsy should be recorded as SUDEP. The second document was based on the background to Sam’s death and highlighted the specific factors that showed that his death should have been recorded as SUDEP, and not as SADS. The documents provided by SUDEP Action were submitted to the Veterans Agency as supporting evidence to the appeal case.

My experience of the SUDEP Action support team has been very positive. Their support had a significant impact on me, and the two families affected by Sam’s death. The unexpected death of a young person will always be distressing, but in this case our distress was increased by the unfair treatment of Sam’s widow – my daughter – and the consequent need to challenge the findings of a post-mortem and coroner’s inquest. SUDEP Action’s support allowed a non-clinician to successfully challenge both findings and helped to secure a young widow’s financial situation.

Stephen (Sam’s father-in-law)


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