Epilepsy Society

We envision a vibrant life for everyone impacted by epilepsy. Our goal is to ensure that all individuals affected by epilepsy can live life to the fullest, with as few seizures as possible. We are committed to making a positive impact on every person connected to epilepsy, regardless of their background, the severity of their situation, or whether they have the condition themselves or support someone who does.

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Epilepsy Society appoints Transformation Director to help revolutionise treatment of epilepsy

2 weeks ago | epilepsysociety.org.uk | Nicola Swanborough

We are thrilled to announce that Sanjay Sisodiya has been appointed to the new role of Transformation Director at the Epilepsy Society. Professor Sisodiya will combine this role with his clinical and research responsibilities at UCLH and UCL. This is as part of our much-valued partnership with UCLH and UCL that brings so many benefits to people with epilepsy.
New study shows how our genes could help explain drug resistance in epilepsy

4 weeks ago | epilepsysociety.org.uk | Nicola Swanborough

The Epilepsy Society has welcomed the findings of an international study that throws new light on why some people with focal epilepsy do not respond to anti-seizure medications. It is the first research to provide evidence that common genetic variants significantly contribute to drug resistance in epilepsy. One in three people with epilepsy have drug resistance, meaning their seizures cannot be controlled with current treatment options.
Stress, stairs and epilepsy in the House of Commons

2 months ago | epilepsysociety.org.uk | Nicola Swanborough

Nicola Swanborough 17 March 2025 Stress, stairs and epilepsy in the House of Commons Rosie Wrighting is one of just 10 Gen Z MPs. She is the youngest female to be elected at the last election and has recently been appointed as a Labour Health Champion. But here she puts politics to one side to speak, for the first time in public, about another important part of her life – her epilepsy.
Ley Sander stands down as Medical Director of the Epilepsy Society

2 months ago | epilepsysociety.org.uk | Nicola Swanborough

Ley Sander is to stand down as Medical Director of the Epilepsy Society, a position he has held since 2012. During his time at the charity, he has consistently been ranked as one of the top epilepsy specialists in the world. Ley is a professor of neurology at UCL but has worked at the Epilepsy Society’s Chalfont Centre for over 40 years, joining in 1984 as a Senior House Officer.
Ley Sander stands down as Medical Director of the Epilepsy Society

2 months ago | epilepsysociety.org.uk | Nicola Swanborough

Ley Sander is to stand down as Medical Director of the Epilepsy Society, a position he has held since 2012. During his time at the charity, he has consistently been ranked as one of the top epilepsy specialists in the world. Ley is a professor of neurology at UCL but has worked at the Epilepsy Society’s Chalfont Centre for over 40 years, joining in 1984 as a Senior House Officer.
45 MPs sign letter asking Health Secretary to end medication shortages

2 months ago | epilepsysociety.org.uk | Nicola Swanborough

Forty-five MPs have joined the Epilepsy Society, Epilepsy Action and SUDEP Action in calling on Health Secretary Wes Streeting to end the misery endured by people with epilepsy as they struggle to get their medication. Last month news broke of the death of 44-year-old David Crompton from Yorkshire who died after being given an IOU for his epilepsy medication from his pharmacy.
Men taking valproate no longer need sign off from two specialists

2 months ago | epilepsysociety.org.uk | Nicola Swanborough

New guidance has been published around the prescribing of the epilepsy medication, valproate for men under the age of 55. Following advice from the Commission on Human Medicines, the medicines and healthcare regulator, the MHRA has confirmed that men (males) in this category who are already taking valproate, will not need to see two specialists in order to remain on the medication.
Scotland gets new drug for Lennox Gastaut syndrome - now England waits

Feb 10, 2025 | epilepsysociety.org.uk | Nicola Swanborough

Children over the age of two and adults with Lennox-Gastaut syndrome (LGS) in Scotland can now be prescribed the anti-epilepsy medication, fenfluramine. The news follows a decision by the Scottish Medicines Consortium (SMC)to allow restricted use of fenfluramine for patients with LGS by NHS Scotland, where seizures have not been controlled after trying two or more anti-epileptic medications.
Epilepsy Society Writes to Health Secretary Following a Death Linked to Medicine Shortages

Jan 16, 2025 | epilepsysociety.org.uk | Nicola Swanborough

The Epilepsy Society has written to Health Secretary Wes Streeting, following the death of a 44-year old man with epilepsy, after he was given an IOU for medication to control his seizures. We have been campaigning relentlessly for the Government to commission a full review of the medicines supply chain, but the death of David Crompton from Yorkshire, has brought new urgency to the campaign.
Study suggests risk of harm for babies fathered by men taking valproate

Jan 13, 2025 | epilepsysociety.org.uk | Nicola Swanborough

A man with epilepsy, David Crompton, died after a fall downstairs last December, and in a report issued on New Year’s Eve, the West Yorkshire senior coroner found that his epilepsy was a contributing factor. Mr Crompton had been prescribed with the anti-seizure medication Tegretol but on two occasions his pharmacy had been unable to supply it. Waiting for relatively lengthy times on two occasions was a matter of concern the coroner said.