The parents of a 17-year-old girl who died in her sleep after a seizure have said Jersey’s hospital “let her down” and are calling for improvements in epilepsy care and better support for families.
Highlands College student Daisy Stephenson died at home in May 2023, and an inquest into her death began this morning at Morier House.
She had lived with a rare and complex form of epilepsy since childhood and had tried around a dozen medications, none of which successfully controlled her seizures.
“Disgusted and ashamed”
The hearing was told that Daisy’s seizures had become more frequent at night in the months before she died, but her parents said they were never provided with a seizure alarm to detect them or told that charitable funding might be available to help obtain one.
They also said they were not properly informed about the risks of Sudden Unexpected Death in Epilepsy (SUDEP) – when a person with epilepsy dies suddenly.
Her parents, Warren and Claire Stephenson, told the hearing that her condition was poorly managed and that her death “could’ve been avoided”.
“The illness was not managed correctly by the hospital. We are disgusted and ashamed. The hospital let her down,” they said in a statement read at the hearing.
Calls for change
Consultant paediatrician Dr David Lawrenson told the inquest that Daisy’s condition was particularly resistant to treatment and that her care had entered a stage of “educated trial and error” as options became more limited.
The Stephenson family are now calling for seizure alarms to be routinely offered to families where children have night-time seizures, for a support group to be set up for those affected by epilepsy, and for a pathway to be created so that children can access the ketogenic diet – a treatment they say could have helped but wasn’t available in Jersey.
The inquest continues all week.