Our policy work
Our policy work
Fighting for the bereaved so their voices are heard
SUDEP Action’s policy group work with a network of experts and volunteers to make sure that epilepsy deaths – and issues facing those bereaved by epilepsy – are recognised when policy makers formulate plans and take decisions.
The work includes lobbying MPs, campaigning for urgent change and sharing decades of expertise, to improve national and local guidelines, as well as NHS plans and external policies that have a direct impact on people with epilepsy, their families and those who have lost loved ones to the condition.
“I know the many entrenched myths and taboos we have overcome since, as one of four women founders, we first wondered how we could change a world view that had passed over so many thousands of sudden deaths. We have built a community of support that we believe is strong enough to overcome any hostility or prejudice that we meet.”
Jane Hanna, SUDEP Action Director of Policy & Influencing
Nationally
Epilepsy deaths the number one research priority
- • Maternal deaths (MBRRACE).
- • Accident and Emergency (NCEPOD) and on influential regional bodies (The Clive Treacey Independent Inquiry).
- • In 11 areas across the Midlands region Epilepsy and SUDEP was recognised as a public health priority following the sudden death of Clive Treacey and a four-year campaign to get an inquiry into his death.
The UK Epilepsy Research Priority Setting Partnership announced in 2023 that epilepsy deaths were the number one priority for UK epilepsy research – as chosen by the epilepsy community. We contributed to this process and are pleased the research community is now prioritising something we’ve known is vital for nearly 30 years. We have served on many national panels tackling the prevention of epilepsy deaths and emergencies including:
Our policy work
Your right to emergency medications
Sometimes, people with epilepsy experience delays in getting their repeat prescriptions because of occasional shortages in medications supply.
However, if you find yourself without your regular anti-seizure medications you can request a minimum emergency supply from any chemist, to tide you over until you receive your regular prescription.
Charlie Marriage was unable to obtain access to his medication when he needed it. He subsequently died of SUDEP in 2021. The tragedy of Charlie’s story is that no one recognised the seriousness of his situation because at the time he asked for help, he looked and sounded well. Epilepsy is a ‘cliff edge’ condition. A seizure can strike out of the blue.
Our policy work
Know your rights
• The Human Medicines Regulations Act 2012 allows pharmacists to provide an emergency supply of anti-seizure medication (except Phenobarbitone) on a patient’s request so long as conditions apply.
• Any patient can request an emergency supply of medication from any pharmacy / chemist without a prescription – and they have a duty to provide it.
• If it is not in stock, they must advise.
More information can be found at the links below:
Charlie Marriage: Prevention of Future Deaths Report – Courts and Tribunals Judiciary
Any health professional can use the SUDEP and Seizure Safety Checklist
Anyone over 16 with epilepsy can use the EpSMon App to assess seizure risk
Also see
A digital tool for reducing risks
Supporting clinicians so important info is shared
A paediatric version of the SUDEP and Seizure Safety Checklist
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
