Mum unaware of SUDEP until after daughter’s death – inquest

A Dorset mum of a 22-year-old woman who died of sudden unexpected death in epilepsy (SUDEP) said in an inquest earlier this month that she only became aware of SUDEP after her daughter’s death.

Amber Grace Walker, who had epilepsy and attention deficit hyperactivity disorder (ADHD), died on 19 April 2023. She had a consultation with a neurologist the month before her death.

During the consultation on 8 March 2023, Amber had said no to an increase in her dose of topiramate, one of the epilepsy medications she had been prescribed. Her risk of SUDEP, and the potential that a higher dose of medication may have reduced it, was not discussed then.

Amber’s mum, Amanda Walker, had attended all of Amber’s appointments with her and told the inquest that SUDEP had not been discussed at any neurology appointments.

This is despite Amber having an “increased risk” of SUDEP “given her uncontrolled generalised tonic-clonic seizures that she experienced at night” (sleep seizures), the coroner’s ‘prevention of future deaths report’ stated.

In August 2022, Amber had had a cluster of seizures, leading to a trip to the hospital, where she’d had another seizure. In November 2022, she spoke to an epilepsy specialist nurse.

In the month before her neurologist consultation, Amber had had another two seizures.

Coroner Brendan Allen outlined his concerns with the case in the report, published on 21 October, to be sent to the Secretary of State for Health and Social Care. He said: “Doctors can be reluctant to discuss SUDEP with patients and/or presume it is a discussion that has been had at previous appointments with colleagues that does not need repeating.

“Discussions about SUDEP ensure that patients are aware of the general risks of SUDEP, the risks that are specific to the patient and the measures that can be taken to mitigate the risk.”

Another concern was that “SUDEP is not covered in the medical training of doctors, despite it being the leading cause of death in patients with a diagnosis of epilepsy.

“It is not only neurologists that will encounter patients with epilepsy where a discussion regarding SUDEP may be required, as demonstrated by Amber’s experience.”

“Clear, sensitive conversations”

Alison Fuller, director of health, improvement and influencing at Epilepsy Action said: “We express our deepest sympathies to Amber’s family and everyone who loved her, who had their daughter taken away by this cruel condition. We welcome the Coroner’s report and strongly support the recommendation that the Department of Health and Social Care must take further action to prevent deaths from Sudden Unexpected Death in Epilepsy (SUDEP).

“As highlighted in this case, SUDEP is the leading cause of premature death among people with epilepsy, yet far too many families tell us they were never made aware of it. It is especially worrying that Amber, who was experiencing uncontrolled sleep seizures – a known risk factor for SUDEP – was not given information about the condition or the measures that can be put in place to sometimes help reduce risk.

“Every person with epilepsy deserves clear, sensitive conversations about SUDEP so they and their loved ones can make informed choices and feel supported and safe. We support the urgent calls for a consistent national approach to ensure these conversations happen routinely in epilepsy care, backed by targeted training for healthcare professionals and available guidance to empower and support both patients and their families.”

The coroner highlighted the use of tools, such as the SUDEP Checklist from SUDEP Action to help facilitate conversations between doctors and patients with epilepsy.

He called for urgent action from the Health Secretary to prevent future deaths.

If you have any concerns or questions, you can contact the Epilepsy Action Helpline. There is also more information about SUDEP on the Epilepsy Action website.