'my Daughter Died In Her Sleep, With No Warning'

A female whose girl died from a information linked to epilepsy has said nan family feels "robbed" and "heartbroken".

Nicola Burns was 41 years aged erstwhile she died successful her slumber from a information called Sudden Unexpected Death successful Epilepsy (SUDEP).

Her mother Jo-Ann Burns has said Nicola was not told astir SUDEP, contempt having lived pinch epilepsy for years.

She has told BBC News NI that epilepsy patients request to beryllium warned they are astatine a higher consequence of decease and what they tin do to trim it.

SUDEP has respective informing signs, including uncontrolled and nocturnal slumber seizures, and affects astir 1 successful 1,000 group pinch epilepsy each year.

Nicola had not shown immoderate signs of unwellness arsenic a kid but was diagnosed pinch nocturnal seizures successful her 20s.

Even aft her test she did not show galore signs of nan condition, only seldom going to infirmary aft a seizure.

Jo-Ann said because of this they had go "too complacent" astir nan unwellness and nan family would person been much wary if they had been made alert of nan consequence of SUDEP.

"We consciousness robbed. Nicola was handling her epilepsy, taking her medicine which was reviewed periodically but she nor america knew thing astir abrupt unexpected death."

Because SUDEP is thought to hap either during aliases pursuing a seizure, it is imaginable that it is owed to a problem pinch nan person's heart, aliases breathing, during aliases pursuing nan seizure.

Symptoms of nocturnal seizures tin see signs of abrupt awakening pinch confusion, thrashing, convulsive movements, screaming, aliases waking up connected nan floor.

While astir walk without complication, they tin lead to wounded or, successful uncommon cases, death.

Nicola's sister Catriona said nan decease feels for illustration a nightmare that they person still to aftermath up from.

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

She said it came moreover much arsenic a daze arsenic epilepsy was ever conscionable successful nan inheritance of her sister's life.

"We astir apt underestimated it because Nicola lived life to nan afloat and was seldom ill, successful truth I ne'er witnessed an epileptic fit.

"I said to her nan nighttime earlier she died and we laughed astir her having a cocktail. She sent maine pictures and was conscionable successful awesome shape connected a activity arena successful London."

Catriona said nan business was "made worse" arsenic she felt it "could person been prevented, if we'd known astir nan condition".

At an inquest into Nicola's decease successful 2025, nan coroner queried why SUDEP had not been raised pinch her and why an yearly reappraisal by nan South Eastern Health Trust had not taken place.

In correspondence to nan family, seen by nan BBC, nan spot said Nicola's yearly reappraisal did not return spot owed to "capacity" issues.

In a connection to BBC News NI nan spot said it wished to definitive its "deepest condolences" to nan family and that pursuing a review, an proposal archive had been created for patients which includes a conception connected SUDEP.

The family person described nan South Eastern Health Trust's consequence to their daughter's decease arsenic "disappointing".

The family besides said they were told that SUDEP is usually discussed astatine nan clip of test and, arsenic this had happened while Nicola lived successful England, nan work laic there.

The Walton Centre successful Liverpool, wherever she was diagnosed, confirmed location was "no written confirmation" that SUDEP had been raised pinch Nicola.

In a missive it said: "It is truthful not clear whether this was discussed pinch her and not documented but we person not intelligibly documented this."

Jo-Ann said nan family has been near wondering would nan result person been different if Nicola had been reviewed arsenic planned.

Nicola's decease prompted nan family to scope retired to nan kindness SUDEP Action and they discovered galore families for illustration theirs had not heard of nan information until aft their loved ones died.

The charity's Jane Hanna said patients and their families request to beryllium equipped pinch accusation arsenic deaths tin beryllium prevented pinch much awareness.

"Epilepsy is simply a cliff separator condition. While immoderate group whitethorn look really well, if their epilepsy is retired of kilter, location is this consequence of abrupt death," she said.

The kindness has respective devices to support patients and clinicians including a integer app and a checklist, truthful patients tin way their symptoms, cognize what their individual risks are and little them.

The National Institute for Health and Care Excellence (NICE), said clinicians should talk nan consequence of SUDEP pinch group who person seizures during slumber and, if appropriate, to see their families and carers.

Management includes curen involving anti-seizure medications (ASM), keeping a accordant slumber schedule, and using seizure monitors.