Despite interrupting the lives of millions around the world, epilepsy has never received the attention or the research funding it deserves. But that could be about to change. In the Research Blog this month, we’ll be looking at new initiatives with the potential to make a lasting difference for people with epilepsy.
Epilepsy is one of the most prevalent, serious neurological conditions. Around 65 million people worldwide live with epilepsy – in the UK, that’s around 1 in every 100. Millions live with seizures which can’t be controlled by existing treatments and many face stigma, discrimination and a lack of support.
However, the attention given to epilepsy – in politics, healthcare and research – has not yet matched the impact that the condition has across the world. Research into epilepsy receives only 7% of neurological research funding, and 0.3% of the total spent on health-related research in the UK. As a result, progress for epilepsy has lagged behind other conditions affecting similar numbers of people, and countless lives continue to be interrupted.
But things could be about to change. Momentum is building which we hope will help shift the way epilepsy is viewed. There is a new focus on increasing investment in research, and in turn providing better care for people affected by epilepsy. The case for government and institutional support is mounting and we need to seize the moment. We are at tipping point.
There are many things giving us this optimism, and on the Research Blog this month, we’ll be looking in more detail at three exciting initiatives.
First is the release of a report which will potentially bring about real change in policy and practice across the world. The World Health Organisation (WHO) will soon publish an Intersectoral Global Action Plan (IGAP) for epilepsy and other neurological conditions. Governments around the world will be compelled to respond to the recommendations set out in the IGAP, which will cover areas such as improving access to treatment, fostering research, awareness raising and preventing epilepsy.
Epilepsy Research UK President Professor Helen Cross OBE is the global president of the International League Against Epilepsy and played an important role in the development of the WHO IGAP. In her blog next week, Professor Cross will explain how important the IGAP will be for people affected by epilepsy and for epilepsy research globally.
Another development which will influence epilepsy care closer to home is the release of new guidelines from the National Institute for Health and Care Excellence (NICE). The NICE guidelines will provide the NHS in England with up-to-date recommendations on best practice in epilepsy care, including diagnosis, treatments, support needs and reducing the risk of epilepsy-related deaths. The guidelines will also provide an insight into the key areas of epilepsy where more research is needed. This will help ensure organisations like Epilepsy Research UK are funding research that matters the most to people affected by epilepsy.
Angie Pullen is Director of Epilepsy Services at the charity Epilepsy Action and a member of the NICE panel which develops new guidelines for epilepsy. On the Research Blog later this month, Angie will be sharing the importance of the updated NICE guidelines, and how they will improve the quality of care and services and inform future research into epilepsy.
Later this month, we’ll provide an update on the UK Epilepsy Priority Setting Partnership (PSP). This national survey spearheaded by Epilepsy Research UK is creating a set of key research questions prioritised by people in the UK affected by epilepsy. This will ensure that research is focussed on addressing the needs of people affected by the condition and the issues that matter most to them.
Anna Norton, our charity’s Research and Involvement Officer, will be explaining what the PSP has achieved so far, and what’s next.
These are just a few examples of the many promising developments making epilepsy a priority in policy and healthcare. One thing they all have in common is the focus on research and identifying key questions which still need to be answered.
And finally, in the lead up to National Epilepsy Week (23rd to 29th May) we’ll be announcing the new research projects funded by your donations through our annual grant round. Our annual funding process lasts around ten months and involves researchers, our Scientific Advisory Committee, independent external peer reviewers, and, most importantly, members the Epilepsy Research UK Shape Network. This process culminates in the funding of exciting, innovative and vital new research projects, all which aim to stop epilepsy interrupting lives. Our Head of Research, Caoimhe Twohig-Bennett, will provide an update on the incredible research made possible by your support.
Epilepsy interrupts the lives of millions of people around the world. But it finally feels that we are approaching a tipping point where – with everyone working together – the condition receives the attention it has long deserved.
Keep an eye on the Research Blog during May where Professor Helen Cross, Angie Pullen and Anna Norton will be telling us more about how these exciting initiatives are helping to push epilepsy care and research forward. And then learn about the projects you’ve funded and how you can help make a difference for research during National Epilepsy Week.