'Nobody told my daughter about epilepsy death risk'

Amber Walker died at the age of 22 from Sudden Unexpected Death in Epilepsy

The leading cause of death in epilepsy is rarely explained to patients by doctors, a grieving father has said.

Martin Walker said his daughter Amber was never told about her 1 in 150 chance of of Sudden Unexpected Death in Epilepsy (SUDEP) before she died in 2023 at the age of 22.

In a report on the case, Dorset coroner Brendan Allen urged the government to ensure doctors are trained on the condition and discuss it with patients.

The Department of Health and Social Care has been approached for comment.

Mr Walker, from Westbourne, said: "SUDEP seems be invisible across the health service.

"Amber was nine when she started to have epileptic fits. We thought we were aware of the dangers.

"If she was in the swimming pool on holiday, I wouldn't take my eyes off her. You worry about her riding a bike or crossing the road.

"But nobody told me you could suddenly just die."

Ms Walker was found dead in her bedroom at home on 19 April 2023, despite being well a few hours earlier.

Her father said she had visited a hospital consultant a month earlier, at a time when she had started to experience tonic-clonic seizures.

He said: "She was displaying what we now know are red flags for SUDEP.

"One in 150 people with Amber's symptoms die.

"He listened to our story and said to Amber: 'You could increase one of your medications if you'd like to.'

"She declined - youngsters don't like their medications.

"What he should have said is: 'You have to take your medication.'"

In a Prevention of Future Deaths Report, the coroner said: "An increase in her medication may have reduced the risk of further seizures, which, in turn, may have decreased Amber's risk of SUDEP."

"There was no discussion in the consultation about SUDEP and Amber's increased risk"

The coroner added that SUDEP was apparently never previously discussed with the family by other health workers.

He said doctors could be reluctant to talk about SUDEP with patients and the subject was not covered in medical training.

The Oxfordshire based charity SUDEP Action, which has worked with the Walker family, welcomed the coroner's findings.