Family Feels 'Robbed' After Nicola Burns Dies from SUDEP
A woman whose daughter died from a condition linked to epilepsy has expressed that the family feels "robbed" and "heartbroken".
Nicola Burns was 41 years old when she died in her sleep from a condition called Sudden Unexpected Death in Epilepsy (SUDEP).
Her mother, Jo-Ann Burns, stated that Nicola was not informed about SUDEP despite living with epilepsy for many years.
Jo-Ann told NI that epilepsy patients should be warned about their increased risk of death and advised on measures to reduce it.
SUDEP has several warning signs, including uncontrolled and nocturnal sleep seizures, and affects approximately one in 1,000 people with epilepsy annually.
Nicola had no signs of illness during childhood but was diagnosed with nocturnal seizures in her twenties.
Even after diagnosis, she rarely exhibited symptoms and seldom required hospital visits following seizures.
Jo-Ann commented that due to this, the family had become "too complacent" about the illness and would have been more cautious had they been aware of SUDEP risks.
"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."
What is SUDEP?
SUDEP is defined by the charity SUDEP Action as the sudden death of a person with epilepsy where no other cause of death can be identified.
It is believed to occur during or after a seizure, potentially due to complications involving the heart or breathing.
Symptoms of nocturnal seizures may include sudden awakening with confusion, thrashing, violent movements, screaming, or waking up on the floor.
While most seizures resolve without complications, they can sometimes lead to injury or, in rare instances, death.
Nicola's sister, Catriona, described the loss as a nightmare they have yet to awaken from.
"I loved her to bits, she was my big sister who did everything for all of us."
She noted that epilepsy was always a background presence in Nicola's life, often underestimated because Nicola lived fully and was rarely ill.
"We probably underestimated it because Nicola lived life to the full and was rarely ill, in fact I never witnessed an epileptic fit.
"I spoke to her the night before she died and we laughed about her having a cocktail. She sent me pictures and was just in great form on a work event in London."
Catriona expressed that the situation was "made worse" by the belief that the death "could have been prevented, if we'd known about the condition."
Inquest and Health Trust Response
At an inquest into Nicola's death in 2025, the coroner questioned why SUDEP had not been discussed with her and why an annual review by the South Eastern Health Trust had not occurred.
Correspondence seen by the BBC from the trust indicated that Nicola's annual review did not take place due to "capacity" issues.
The trust issued a statement expressing its "deepest condolences" to the family and noted that following a review, an advice document including a section on SUDEP had been created for patients.
The family described the South Eastern Health Trust's response as "disappointing."
They were also informed that SUDEP is typically discussed at diagnosis, which for Nicola occurred while she lived in England, placing responsibility there.
The Walton Centre in Liverpool, where Nicola was diagnosed, confirmed there was "no written confirmation" that SUDEP had been discussed with her.
In a letter, the centre stated: "It is therefore not clear whether this was discussed with her and not documented but we have not clearly documented this."
Jo-Ann said the family remains uncertain whether the outcome would have differed had Nicola received the planned reviews.
Understanding the Risks of Epilepsy
Nicola's death led the family to contact the charity SUDEP Action, discovering many families had not heard of the condition until after losing loved ones.
Jane Hanna of SUDEP Action emphasized the importance of informing patients and families as increased awareness can prevent deaths.
"Epilepsy is a cliff edge condition. While some people may seem really well, if their epilepsy is out of kilter, there is this risk of sudden death,"
She noted the charity offers tools for patients and clinicians, including a digital app and checklist, enabling patients to monitor symptoms, understand personal risks, and reduce them.
Preventing SUDEP
The National Institute for Health and Care Excellence (NICE) recommends clinicians discuss SUDEP risks with patients who experience seizures during sleep and, when appropriate, include families and carers in these discussions.
Management strategies include anti-seizure medications (ASM), maintaining consistent sleep schedules, and using seizure monitoring devices.
In a report on a SUDEP-related death in England, Dorset coroner Brendan Allen urged the government to ensure doctors receive training on SUDEP and discuss it with patients.
