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The family of a 32-year-old man who died after a two-day struggle to get hold of vital anti-seizure drugs has launched a UK awareness initiative to ensure others with epilepsy know how to access medication in a crisis.
Charlie Marriage died in June 2021 from Sudden Unexpected Death in Epilepsy (SUDEP) after he was unable to obtain an emergency supply of his regular medication through NHS 111, his local health centre, or a London pharmacy.
Under existing NHS guidance, a patient on repeat medication has a legal right to request an emergency supply from any pharmacy until their next prescription.
The family only found out after Charlie’s death that there was legislation in place to ensure those who need life-saving medication have access to it out of hours and without contacting a doctor.
In response to his death, they have launched the “Charlie Card” to avoid others falling through the cracks and to remind healthcare professionals of their legal duty to dispense medications in emergencies.
“Getting time critical medicine to people with ‘cliff edge’ conditions in the fastest possible time is the goal,” said his mother Henrietta Hastings.
She has worked with the epilepsy charity SUDEP Action, as well as the Independent Pharmacies Association, to set up the scheme in honour of her son.
“It is your right,” she added. “If someone had just said to Charlie, ‘if it’s emergency meds and it’s on your repeat prescriptions list, you can go to any pharmacy that’s got your meds’, my son would still be here.”
An inquest was held in the wake of his death, which established that the NHS had failed him at various points.
The coroner, Mr Xavier Mooyaart, issued a Prevention of Future Deaths report to NHS England urging the public body to consider the risks posed to other patients with similar conditions that may suddenly deteriorate.
Jane Hanna, director of policy & influencing at SUDEP Action, which supports those who have lost people to sudden epilepsy-related deaths, said: “Charlie was unable to get the help he needed from those who should have understood his risk.
“The tragedy of his story is that no one recognised the seriousness of his situation because at the time he asked for help, he looked and sounded well.
“However, epilepsy is a ‘cliff edge’ condition. You may face a life-threatening crisis without your medication. Anti-seizure meds are absolutely time critical.”
Hastings and members of SUDEP Action will officially launch the free “Charlie Cards” outside the Department of Health on Wednesday.
The family has also written to health secretary Wes Streeting to request a meeting.
A Department of Health and Social Care spokesperson said: “Our deepest sympathies are with Charlie’s family and friends in this tragic case, and we thank them for putting in place a legacy for him through Charlie’s Cards.
“We consider every prevention of future death report carefully and will respond in due course.”
