'My epileptic daughter died in her sleep, with no warning'

The "heartbroken" mother of a woman who died from a condition linked to epilepsy has said patients need to be warned they are at a higher risk of death and what can be done to reduce it.

Jo-Ann Burns said her 41-year-old daughter Nicola, who had been diagnosed with nocturnal seizures in her 20s, was not told about Sudden Unexpected Death in Epilepsy (SUDEP).

SUDEP has several warning signs, including uncontrolled and nocturnal sleep seizures, and affects about one in 1,000 people with epilepsy every year.

At an inquest into Nicola's death in 2025, the coroner queried why SUDEP had not been raised with her and why an annual review by the South Eastern health trust hadn't taken place.

In a statement to BBC News NI the trust said it wished to express its "deepest condolences" to the family and following a review, its neurology epilepsy lead has developed a comprehensive advice document which is now added to patient's clinical letters, including a section on SUDEP.

Speaking to BBC News NI, Jo Ann said Nicola had so much more life to live and that her death had left them feeling "heartbroken".

"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 had not shown any signs of illness as a child and, after her diagnosis she did not show many signs of the condition, only rarely going to hospital after a seizure.

Her mum said that because of this they had become "too complacent" about the illness.

However she feels they would have been more wary if they'd been made aware of the risk of SUDEP.

SUDEP is when someone who has epilepsy dies suddenly and no other cause of death can be found, according to the Epilepsy Society.

Because SUDEP is thought to happen either during or following a seizure, it is possible that it is due to a problem with the person's heart, or breathing, during or following the seizure.

Symptoms of nocturnal seizures can include signs of sudden awakening with confusion, thrashing, violent movements, screaming, or waking up on the floor.

While most pass without complication, they can lead to injury or, in rare cases, death.

Nicola's sister Catriona said the death feels like a nightmare that they have still to wake up from.

"I loved her to bits, she was my big sister who did everything for all of us."

According to Catriona, her sister's death came even more as a shock as epilepsy was always just in the background of her sister's life.

"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.

"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 said the situation was "made worse" as she felt it "could have been prevented, if we'd known about the condition.

The family have described the South Eastern Health Trust's response to their daughter's death as "disappointing".

In a correspondence to the family, seen by the BBC the trust said Nicola's annual review did not take place due to "capacity" issues.

The family said they were told that SUDEP is normally discussed at the time of diagnosis and, as this had happened while Nicola lived in Liverpool, the responsibility lay there.

In a letter from her hospital, The Walton Centre, in Liverpool, where she was diagnosed, a letter confirmed there was "no written confirmation that SUDEP was discussed".

"It is therefore not clear whether this was discussed with her and not documented but we have not clearly documented this," it added.

Jo-Ann said the family is left wondering if Nicola had been reviewed as planned would the outcome have been different.

Nicola's death prompted the family to reach out to the charity SUDEP Action.

Jo-Ann said they discovered that many families like theirs hadn't heard of the condition until after their loved ones died.

The National Institute for Health and Care Excellence (NICE), says clinicians should discuss the risk of SUDEP with people who have seizures during sleep and if appropriate to include their families and carers.

Management includes treatment involving anti-seizure medications (ASM), keeping a consistent sleep schedule, and using seizure monitors.

Jane Hanna from charity, SUDEP Action, said patients and their families need to be armed with information.

"Epilepsy is a cliff edge condition, so while some people may seem really well, if their epilepsy is out of kilter, there is this risk of sudden death."

She said deaths can be prevented with more awareness.

The charity has several tools to support patients and clinicians including a digital app and a check list, so patients can track their symptoms and know what their personal risks are and lower them.

It also provides more information for clinicians to manage patients, to intervene in their care and even refer them on.

Families have told the charity that SUDEP is rarely explained to patients by doctors.

In a report into a SUDEP related death in England, Dorset coroner Brendan Allen urged the government to ensure doctors are trained on the condition and to discuss it with patients.