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A mother grieving the sudden loss of her daughter from an epilepsy-related condition has called for better awareness and communication about the risks involved. Jo-Ann Burns described how her 41-year-old daughter, Nicola, diagnosed with nocturnal seizures in her twenties, was never informed about Sudden Unexpected Death in Epilepsy (SUDEP). Nicola’s passing came unexpectedly in her sleep, leaving the family devastated and seeking answers about what might have been done to prevent such a tragedy.
SUDEP, which affects approximately one in every thousand people with epilepsy each year, is linked to seizures occurring during sleep. It is believed to result from complications related to irregularities in heart function or breathing during or following a seizure. Signs indicating higher risk include uncontrolled seizures and nighttime episodes. Despite these warnings, Nicola had not received information about SUDEP, and her periodic health reviews had been missed, as highlighted in the 2025 inquest into her death. The coroner raised concerns regarding the lack of communication and incomplete annual reviews by the South Eastern Health Trust.
Jo-Ann detailed how Nicola had lived a relatively symptom-free life, rarely needing hospital treatment for her seizures, which sadly led the family to become complacent about the severity of her condition. “We feel robbed, Nicola was handling her epilepsy, taking her medication which was reviewed periodically but she nor us knew anything about sudden unexpected death,” Jo-Ann said. Nicola’s sister Catriona echoed this sense of disbelief, emphasizing how Nicola appeared vibrant and healthy until the very end. “We probably underestimated it because Nicola lived life to the full and was rarely ill, in fact I never witnessed an epileptic fit,” she said. The suddenness of Nicola’s death was compounded by the family’s feeling that it might have been avoidable had they been better informed.
Following Nicola’s death, the South Eastern Health Trust expressed condolences and stated that improvements were underway, including the addition of a detailed guidance document on SUDEP to patients’ clinical letters. However, the family described the trust’s handling of Nicola’s care and communication as “disappointing.” Letters from Nicola’s diagnosing hospital in Liverpool noted a lack of documented discussion on SUDEP, leaving uncertainty about whether she had ever been informed. The family has since connected with the charity SUDEP Action, discovering many others are similarly unaware of the condition until tragedy strikes. SUDEP Action and the National Institute for Health and Care Excellence (NICE) advocate for open discussions about SUDEP risks, especially for patients experiencing sleep seizures, to promote preventive steps such as consistent medication management, regular sleep patterns, and use of seizure monitors. The charity also offers tools to help individuals track symptoms and assess their risk, empowering patients and health professionals to reduce the likelihood of sudden death related to epilepsy
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