Major new research project to reveal the true lifetime cost of epilepsy

Epilepsy comes at a significant cost to individuals, families, public services and society, but the true financial cost, and where money is being lost or poorly spent, is not yet fully understood. A major new research project from the Epilepsy Research Institute and SUDEP Action will examine how funding and resources are being spent across epilepsy care, and where gaps and inefficiencies are creating risk and harm. The project will also make recommendations about what could be done differently to improve the lives of those living with the condition.

The project will provide the most comprehensive assessment yet of the economic impact of epilepsy, generating vital evidence to strengthen the case for greater investment in research, care and support.

Epilepsy affects around one in 100 people, yet for around half of people living with the condition, the cause remains unknown. Around 30% continue to experience seizures despite treatment. Tragically, there are at least 21 epilepsy-related deaths a week in the UK, with 80% of these thought to be preventable.

While the annual cost of epilepsy to the NHS is estimated at around £2 billion, there is currently no comprehensive understanding of the wider costs and consequences of the condition. This lack of evidence makes it harder to demonstrate the scale of unmet need, make the case for investment and understand the potential value of interventions that could improve outcomes and reduce the long-term impact of epilepsy.

The project will examine the financial impact of epilepsy for individuals, families and wider society – including health and social consequences – from birth through to the impact of epilepsy-related deaths and the wide-ranging, long-lasting costs they create for the communities affected.
The findings will provide vital evidence to inform future decisions about epilepsy research, healthcare and investment, helping to build the case for greater support and better outcomes for people affected by the condition.

Rosemarie Pardington, Chief Executive of the Epilepsy Research Institute, said: “Epilepsy has a profound impact on people’s lives, but we still do not have a complete picture of the true financial cost of the condition to individuals, families and society. This project will help us understand the scale of that cost and, crucially, provide us with the evidence we need to make better decisions about research, care and investment. By making the full financial impact of epilepsy visible, we can strengthen the case for action and help drive change for everyone affected by the condition.”

Sammy Ashby, CEO of SUDEP Action, said: “This project is truly exciting. By exploring the economic realities of living with epilepsy, and by exposing the often-overlooked costs of preventable epilepsy deaths, including those endured by the families and communities left behind, we hope to demonstrate why it is more urgent than ever for epilepsy to become a national priority. You can never put a price on an individual’s life or death, but failing to understand the scale of the problem comes at a cost we can no longer afford to ignore.”

We are also delighted to be supported by Epilepsy Action and Young Epilepsy on this important project. Together, we aim to make the true impact of epilepsy and preventable epilepsy deaths visible, providing the evidence needed to drive greater investment in research, services and care. In the longer term, this work could help improve outcomes and quality of life for people affected by epilepsy and their families.