Nicola Burns, aged 41, died in May 2025 from a condition linked to her epilepsy. She had nocturnal seizures diagnosed in her 20s. Her mother Jo-Ann Burns stated that patients require warnings about higher death risks and steps to lower them.

An inquest in 2025 questioned why Sudden Unexpected Death in Epilepsy (SUDEP) was not mentioned to Nicola Burns. The coroner also asked why the South Eastern Health Trust skipped her annual review. SUDEP affects about one in 1,000 epilepsy patients yearly and links to uncontrolled nocturnal seizures.

The trust expressed condolences to the family. After review, its neurology epilepsy lead created an advice document on SUDEP now included in patient letters.

Jo-Ann Burns noted that Nicola took medication with periodic checks but no one knew of SUDEP risks. The family called the trust's response disappointing. The trust cited capacity issues for the missed review and pointed to Nicola's initial diagnosis in Liverpool.

A letter from The Walton Centre in Liverpool confirmed no record of SUDEP discussion at diagnosis.

Nicola's sister Catriona Burns said her sibling showed few epilepsy signs and lived actively. Catriona spoke to her the night before death when Nicola attended a work event in London and appeared well.

The family contacted SUDEP Action charity after the death and learned many others first heard of SUDEP post-loss. Jane Hanna of the charity stated that awareness can prevent deaths. The charity offers tools like a digital app and checklists for patients to track symptoms and reduce personal risks.