‘New Charlie Cards will save lives’ says Charlie’s Mother
Charlie's mother; Henrietta Hastings, and the coroner, say the systems in place, which were meant to protect her son, failed him.
The family of Charlie Marriage, who died from SUDEP in 2021 have worked alongside our team at SUDEP Action as well as the Independent Pharmacies Association to create the ‘Charlie Card’ – to let people with epilepsy know their legal right to emergency medications in a crisis.
Charlie passed away from SUDEP after spending two days trying to get his anti-seizure medication through NHS 111, his health centre and his local pharmacy in London. His mother Henrietta Hastings, and the coroner, say the systems in place, which were meant to protect her son, failed him.
The Charlie Card will provide people with epilepsy with something they can show to health professionals to remind them of their legal right to a minimum emergency supply of their regular anti-seizure meds (except Phenobarbitone) from any chemist, until their next prescription. This is under the Human Medicines Regulations 2012. The cards are now available for free to order from the SUDEP Action Shop, alternatively you can download a PDF version of the Charlie Card to keep safely on your phone.
Today SUDEP Action and members of Charlie’s family will launch the Charlie Card outside the Dept of Health & Social Care offices in Victoria Street, Westminster at 12pm.
Charlie’s family will also be delivering a second letter to Wes Streeting, Sec of State for Health & Social Care, to request a meeting to discuss action on the Prevention of Death Report that followed Charlie’s death. They have not received a response from their first letter.
Henrietta believes Government policy is deliberately withholding the public’s right to access medicines directly from a pharmacist. She said: “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, Director of Policy & Influencing 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.”
Dr Leyla Hannbeck, CEO of 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.”
To claim your free Charlie Card, go to the SUDEP Action shop
Or click the link to download your Charlie Card
