Home / Health / SUDEP: Mother's Plea for Epilepsy Risk Warning
SUDEP: Mother's Plea for Epilepsy Risk Warning
11 Mar
Summary
- Mother's daughter died from condition linked to epilepsy.
- Patient was not informed about Sudden Unexpected Death in Epilepsy (SUDEP).
- Health trust acknowledges review and has updated patient advice.
A grieving mother is advocating for greater awareness of Sudden Unexpected Death in Epilepsy (SUDEP) following the tragic death of her 41-year-old daughter, Nicola. Nicola, who had been diagnosed with nocturnal seizures in her 20s, was reportedly not informed about the risks of SUDEP, a condition that affects approximately one in 1,000 individuals with epilepsy each year.
An inquest into Nicola's death in 2025 questioned why SUDEP had not been discussed with her and why an annual review by the South Eastern health trust had not occurred. The trust has expressed condolences and stated that, following a review, a comprehensive advice document including information on SUDEP has been developed and is now included in patient clinical letters.
SUDEP occurs when an epilepsy patient dies suddenly with no other cause found, often linked to heart or breathing issues during or after a seizure. Despite Nicola managing her epilepsy with medication, her family stated they were unaware of SUDEP, leading to a sense of being "robbed." The family also noted disappointment with the trust's explanation that capacity issues prevented Nicola's annual review.
Organizations like the Epilepsy Society and SUDEP Action emphasize the need for patients and families to be informed. NICE guidelines suggest clinicians should discuss SUDEP risks with patients experiencing sleep seizures. While Nicola was diagnosed in Liverpool, her hospital's records indicated no written confirmation that SUDEP was discussed, leaving the family questioning if earlier, documented discussions could have altered the outcome.
