In Health & NHS

Follow this topic

Bookmark

Record learning outcomes

The family of a 32-year-old man who died after he was unable to obtain his prescribed epilepsy medication have launched a new awareness campaign highlighting the right of epilepsy patients to request urgent repeat supplies. 

Charlie Marriage died from sudden unexpected death in epilepsy (SUDEP) alone in his South London flat in June 2021 having struggled to explain his situation to NHS111 and spent three hours in a local Superdrug branch “begging” for his prescribed Fycompa before a locum pharmacist informed him they did not have it in stock.

A coroner’s report identified numerous failings by the pharmacy and NHS111, as well as Charlie’s GP surgery and the locum pharmacist he spoke to that day. 

Charlie’s mother Henrietta Hastings believes his outcome would have been different had an NHS111 call handler explained to him that the Human Medicines Regulations 2012 state that patients can request an emergency repeat supply of their anti-seizure medication (except phenobarbone) from any pharmacy, provided certain conditions are met. 

His family have teamed up with charity SUDEP Action and the Independent Pharmacies Association to launch ‘Charlie Cards,’ a printable resource that patients can present to pharmacists in an emergency. 

Hastings commented: “In Charlie’s case, we couldn’t understand why neither the GP, NHS 111 or the pharmacist told us about this option. At the inquest, the spokeswoman for NHS England stated it was their policy not to advertise this legal right. We believe patient safety should be the top priority. 

“That’s why we’ve created Charlie Cards – to ensure the public are aware of their legal rights, and to remind pharmacists of their duties under the law.”

Jane Hanna, policy director at SUDEP Action, 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.”

Leyla Hannbeck, CEO of the Independent Pharmacies Association, said: “The tragic death of Charlie Marriage highlights the urgent need for reform in the ways emergency medications are accessed. We support the introduction of the Charlie Card, a vital step in preventing future sudden, unexpected deaths and empowering local pharmacies to fully protect the patients we serve in our communities.

“Today, pharmacists are too often held back by outdated legal restrictions. We urge the government to give this initiative the green light and grant pharmacies the authority to make essential prescription adjustments, such as changing a drug’s form or strength, without forcing patients into potentially dangerous delays.

“The Charlie Card will raise much-needed awareness of the critical role pharmacists can play in emergency care. However, for meaningful change, the law must evolve to make pharmacies a true front door to local healthcare, reducing the strain on the NHS and save lives. We owe it to Charlie’s family and every patient failed by a rigid and outdated system, to act now.”