The family of Nicola Burns says the 41-year-old was never warned about sudden unexpected death in epilepsy before she died in her sleep in May 2025. Her mother, Jo-Ann Burns, and sister, Catriona Burns, are calling for people with epilepsy to receive clearer information about the risk and ways it may be reduced.
Nicola had been diagnosed with nocturnal seizures in her 20s. Her family told BBC News NI that epilepsy had seemed to remain in the background of an active life and that she rarely needed hospital care after a seizure. Jo-Ann said Nicola took her medication and had periodic reviews, but the family did not know about SUDEP.
The case raises two separate questions: what Nicola and her family were told, and whether the planned follow-up occurred. At a 2025 inquest, the coroner questioned why SUDEP had not been raised with Nicola and why an annual review by the South Eastern Health and Social Care Trust had not taken place. The trust later told the family that the review was missed because of capacity issues.
SUDEP Is Rare but the Risk Is Not the Same for Everyone
SUDEP describes the sudden death of a person with epilepsy when no other cause is found. Its mechanism is not fully understood. Death often occurs during or after a seizure, and possible explanations involve disruption to breathing, heart rhythm or brain function.
Across people with epilepsy, the estimated rate is about one death per 1,000 people each year. That population figure does not predict an individual's outcome. Risk varies with seizure type, frequency, control and other circumstances.
NICE identifies potentially modifiable factors that include not taking antiseizure medication as prescribed, alcohol or drug misuse, uncontrolled seizures, focal-to-bilateral or generalized tonic-clonic seizures, living alone and sleeping alone without supervision. Epilepsy Action also identifies frequent uncontrolled tonic-clonic seizures as the largest established risk factor and notes that SUDEP often happens at night.
Nicola's family said she had nocturnal seizures, but the reporting does not provide enough clinical information to calculate her individual risk or determine that a particular intervention would have prevented her death. Her sister's belief that the death might have been preventable is a bereaved relative's account, not a finding established by the inquest.
National Guidance Requires an Individual Conversation
NICE guidance says clinicians should discuss each person's risk of epilepsy-related death, including SUDEP, from the time of diagnosis onward. The conversation should help the person and, when appropriate, family or carers understand the risk and agree on ways to reduce it.
The guidance is more explicit for seizures during sleep: SUDEP should be discussed, and information should include taking medication as prescribed. NICE also says people assessed as being at higher risk may discuss increased night-time supervision or a monitor with their clinician or epilepsy nurse.
Those devices are not guarantees. Epilepsy Action says there is not enough evidence to conclude that seizure alarms or monitors prevent SUDEP. A monitor may alert someone to some night-time seizures, but it can miss events or produce false alarms. The decision therefore needs to reflect a person's seizure pattern, independence and preferences rather than a universal instruction.
Risk communication should also recur. NICE recommends opportunities at each appointment to discuss concerns, a copy of an agreed care plan and repeated information at later appointments according to need. A single mention at diagnosis can be forgotten or become outdated as seizure control and living arrangements change.
The Missed Review Is a Concrete System Failure to Examine
The public evidence does not establish every detail of Nicola's clinical record, but the trust's capacity explanation identifies a specific service issue. An annual review that does not happen cannot reassess seizure control, medication adherence, night-time seizures or whether earlier counseling is still understood.
Capacity is not a clinical reason to omit a review; it is an operational constraint. That makes accountability measurable. The trust can determine how many epilepsy reviews were overdue, how patients were prioritized, whether missed appointments were rescheduled and whether records document an individualized SUDEP discussion.
The same approach avoids turning one family's loss into a generalized accusation against every clinician. Some people receive clear counseling, while others report learning about SUDEP outside the health system or after a death. The policy gap is inconsistency, and consistency can be audited through appointment systems and documentation.
For patients, the practical focus remains seizure control and individualized medical advice. Medication should not be stopped or changed without a clinician. People whose seizures are uncontrolled, changing or occurring during sleep can ask their epilepsy team to review their risk and explain which precautions are supported for their circumstances.
Warning Is a Duty, Not a Promise of Prevention
Nicola Burns' death cannot be reduced to a hypothetical sentence about what one conversation would have changed. SUDEP can occur even when medication is taken and care is conscientious. Telling families about risk does not give them power to eliminate it, and it should not transfer responsibility for a death onto them.
But uncertainty is not a reason for silence. NICE has already set the standard: discuss individual risk from diagnosis onward, revisit it and agree on risk-reduction steps. In Nicola's case, the family's account and the missed annual review indicate that this standard needs a documented answer.
The strongest institutional response would not be a generic apology or another leaflet. It would show whether Nicola's counseling met guidance, why capacity displaced her review, how many other patients were affected and what mechanism now prevents the same gap.
Risk communication cannot guarantee survival. It can preserve informed choice, prompt attention to uncontrolled seizures and prevent families from discovering SUDEP only after bereavement. That is a limited promise, but it is one a health service can and should keep.