What is a Charlie Card?
The Charlie Card is a patient advocacy tool, designed to help people with epilepsy access emergency medication when facing delays, or issues accessing prescriptions. It highlights the legal framework allowing emergency supply under the Human Medicines Regulations 2012.

The Charlie Card was developed by Henrietta Hastings and SUDEP Action following the preventable death of Henrietta’s son, Charlie.

Where can I get one from?
You can request a Charlie Card directly from SUDEP Action here, it’s free and designed to support people with epilepsy and their families.

Who is Charlie?

Charlie Marriage died from SUDEP (Sudden Unexpected Death in Epilepsy) in 2021. He was 32.

His mother Henrietta Hastings has worked alongside SUDEP Action to develop the Charlie Card, in order to prevent what happened to Charlie happening to others struggling to access their epilepsy medication. More information about Charlie’s story can be found here.

Will pharmacists recognise this?
All UK pharmacists are legally permitted to supply prescription-only medicines in an emergency under Regulation 224 of the Human Medicines Regulations 2012, provided certain conditions are met. The Charlie Card helps raise awareness of this and encourages pharmacists to act within the law when a patient is at risk.

Check with the pharmacist that they understand the card is an awareness card for patients and pharmacists. This is because the risk of SUDEP is not always well understood outside hospital settings. Sometimes, a person may look well but be at critical risk if they cannot get hold of their anti-seizure medications.

Does the Charlie Card give me a legal right to my regular medication?

Not exactly. The Human Medicines Regulations 2012 give pharmacists the discretion to supply a prescription-only medicine in an emergency, but it is not an automatic right. The Charlie Card is designed to help you explain your situation and highlight the urgency, especially when seizure control is at risk.

Pharmacists must follow certain conditions under the regulations, including discussing your situation with you in order to understand that:

1.There is an immediate need for the medication (the Charlie Card can help evidence this)

2.That you have previously been prescribed this medication – you may be required to provide evidence that it is your usual medication (e.g. an empty box, repeat slip, or patient record).

The Charlie Card helps communicate these points clearly and respectfully, making it easier for the pharmacist to consider your request within the law.

What happens if the pharmacist refuses to give an emergency supply? 

If a pharmacist refuses to supply your medication, contact other pharmacies directly,  ask if your medication is in stock and put in a request for an emergency prescription. It is important to ask for the reason for the refusal and make a note of it before approaching another pharmacy. There may be a valid clinical or legal reason, but you have the right to raise a concern.  You may well be upset by the refusal and so it is important to seek someone else to help and support to avoid conflict. 

You can make a formal complaint through the pharmacy’s internal process or escalate it to the relevant regulatory body. Please also inform SUDEP Action at [email protected], as your experience could help our work to ensure access to emergency medication.

What if they offer my regular medication, but a different dosage?
Where the dose or formulation or the product is different from what was prescribed, it may not be clinically appropriate or safe. This is especially true for epilepsy. The Charlie Card advocates for continuity of care which is vital for seizure control.

See here for detailed information regarding specific anti-seizure medications and which risk category they fall in to if there are switches to different drug company products: Antiepileptic drugs: updated advice on switching between different manufacturers’ products – GOV.UK.

What country or countries does the Charlie Card apply to?
The Charlie Card is an information awareness card, and so the relevant legal framework for emergency medication applies to all four UK nations: England, Scotland, Wales, and Northern Ireland. The Charlie Card is based on UK law. While it may help raise awareness, it does not have relevant legal standing outside of the UK. However, please contact us and register your interest as we explore potential partners in other countries.

Can I use the Charlie Card as a parent or carer?
Yes,parents and carers can use the Charlie Card to advocate for their child’s medication needs, especially in emergencies. It can be shown to pharmacists to explain the urgency and legal basis for emergency supply, helping to avoid delays that could lead to seizure risk.

What if the pharmacist says they cannot supply my regular brand of medication?
Ask the pharmacist to contact the prescriber or supplier urgently. You can also ask that they check alternative suppliers or that they raise the issue with the pharmacy manager. If they are still unable to help, you can ring nearby pharmacies to check if they have the correct medicine in stock.

What if my medication contains phenobarbital or phenobarbital sodium?

While phenobarbital-based medications are generally excluded from the emergency prescription regulations, there is a specific exception where the medication is prescribed for epilepsy (under s225(4) of the Human Medicines Regulations Act 2012).

Do you have any other resources?

The QR code on the Charlie Card takes you to other resources that can specifically inform you and any professional of individual risks and why medicine is time-critical, e.g.

EpSMon app – SUDEP Action

SUDEP and Seizure Safety Checklist – SUDEP Action

Learning disability resources – SUDEP Action