Epilepsy Research UK has today announced plans to radically advance research into epilepsy. We are launching a national epilepsy research collaborative to identify, prioritise and deliver a programme that will drive research breakthroughs in diagnostics, treatments and prevention of epilepsy. This programme of work will inform a strategic communications campaign led by people affected by epilepsy – and demand the government commits to a research investment of £100 for everyone living with epilepsy in the UK – that’s £100 for every 1 in 100 and £60 million in total. The campaign – #Every1EndingEpilepsy – will raise awareness of the impact of epilepsy and demonstrate how by working collaboratively we will bring about a radical change within a generation.
Epilepsy is one of the most prevalent, serious neurological conditions, with around 1 in every 100 people living with the condition – that’s 600,000 in the UK and 65 million people worldwide. The NHS spends around £2 billion every year on epilepsy services, and the economic impact of epilepsy encompasses education, employment and significant comorbidities. Despite the number of people living with the condition, research into epilepsy receives only 7% of neurological research funding – just 0.3% of the total £4.8 billion spend on health-related research. But we are at a tipping point.
There are currently shifts in awareness and policy initiatives we need to leverage – right now. Last month revised NICE Guidelines for epilepsy were released with recommendations where more research is needed, and in the Autumn, Epilepsy Research UK will publish the Top 10 research priorities of the UK Epilepsy Priority Setting Partnership. But the most pivotal development will be the publishing of the World Health Organization’s Intersectoral Global Action Plan on epilepsy – the WHO IGAP. Once the IGAP has been published, governments around the world will be tasked with responding to the recommendations, potentially bringing about real change in policy and practice. We need to be prepared and positioned to hold the UK government responsible for implementing the key research recommendations. We will show them how to do it. We will provide the road map for delivery.
The time is NOW.
As a community, we need to demand MORE for the next generation. The next generation of people affected by epilepsy, and the next generation of researchers developing innovations in epilepsy treatments and care. We need to bring everyone together to end epilepsy.
The team behind the ambition includes three of the UK’s leading clinicians and researchers. Our Programme Directors are Professor Helen Cross OBE (UCL Great Ormond Street Institute of Child Health), Professor Mark Richardson (King’s College London) and Professor Tony Marson (The Walton Centre, University of Liverpool).
But key to the success of the ambition will be people affected by epilepsy. We are immensely proud to introduce you to our campaign leaders Faye Waddams, campaigner and advocate for better information and advice for women with epilepsy, Dr Charles Steward, parent of children affected by epilepsy and genomics researcher, and Joyce Meads, who lost her sister to epilepsy when she was just 41 years old.
To drive this programme, we are pleased to announce Angie Pullen will join us as Programme Lead. Angie has worked at the forefront of epilepsy for the last 11 years as a Director of Epilepsy Action and Healthcare and Programme Lead. Angie is known and respected in the community for her extensive knowledge and expertise in epilepsy healthcare, and will begin the stakeholder engagement work with us later this summer.
In the coming months, we will be meeting with clinicians, researchers, funders, and epilepsy patient groups throughout the UK. We will seek to understand the shortfalls and challenges that need to be urgently addressed in order to build the capacity of the research environment and most importantly fast track research into epilepsy. For example, we’ve seen the success investment in data infrastructure has had in other disease areas and the revolution it has brought about in treatments and care. It will be areas such as this that we will focus on to drive the systematic and strategic change so urgently needed. Following stakeholder engagement, we will workshop the challenges identified. We will then publish a set of fully scoped and costed themes and the collaborative road map for delivery.
Equipped by the underpinning policy changes and our action plan – in partnership with people affected by epilepsy – we will go to government and demand our equitable share of research funding. We cannot underestimate the power of collaboration. We as a community must work together for every 1 in 100 people living with epilepsy.
The time is now for everyone to come together to end epilepsy.