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#Every1EndingEpilepsy: the progress so far

Prof Tony Marson

Professor Tony Marson

Programme Director, #Every1EndingEpilepsy

- Professor of Neurology, University of Liverpool
- Consultant Neurologist, The Walton Centre

Date Published: May 12, 2023

Author: James Matejka

The #Every1EndingEpilepsy programme, funded and led by Epilepsy Research UK, is working to radically advance research into epilepsy through investment, collaboration and action. The team behind the national epilepsy research collaborative is being led by Professors Tony Marson, Helen Cross, and Mark Richardson. In this Research Blog, Programme Director Professor Tony Marson explains more about the need for #Every1EndingEpilepsy and the progress already made since launching last year.

Why is #Every1EndingEpilepsy needed?

On a daily basis, as a clinician, I have the pleasure of working with a highly talented multidisciplinary team and seeing the difference good quality care makes to patients. At the same time, as a researcher, I see the barriers that are slowing down the development of better epilepsy treatment and care services.

Of course, the greatest barrier to better treatments and care is the massive underinvestment in epilepsy research, despite the significant individual, social and economic burden it causes. I still find it staggering that as one of the most common serious neurological diseases, epilepsy research receives far less funding than other less prevalent neurological conditions. It is clear that the historic underfunding has hampered research and slowed progress and has resulted in a fragmented research ecosystem. But things are changing. I’m pleased to see that the scales are finally starting to tip in our favour thanks to policy shifts such as the WHO IGAP (Intersectoral Global Action Plan), updated NICE Guidelines and the recent UK Epilepsy Priority Setting Partnership.

And now we have brought together our collective UK expertise to respond to the recommendations from these policy briefs and will build capacity to address, through research, the massive challenges faced by people with epilepsy through the #Every1EndingEpilepsy programme. Together we are working to produce a road map, to help drive investment into research and get on the radar of policymakers.  As we all know, it is only through greater investment in research, that we have the potential to reduce the £2 billion annual cost of epilepsy to the NHS.

I’m proud to be part of this research collaborative, made up of many of the best and brightest epilepsy researchers and clinicians from 12 academic institutions and universities. From genetics to diagnostics, this collaboration covers every corner of epilepsy research.

Progress so far?

The programme development is well underway. We have held a series of workshops and consultations, building on the expertise and existing strengths of the research strategy committee and knowledge and experience to identify the challenges and gaps that must be urgently addressed to increase the capacity and capability required to fast-track research into epilepsy.

The UK Epilepsy PSP Top Ten priorities have been integrated into four cross-cutting themes which are now being explored and key patient organisations are involved as PSP champions. The four themes are:  neurodevelopment; disease modification and therapeutics; mortality and risk; and pregnancy, hormones and fertility.

Our progress so far has also highlighted the many strengths of the UK epilepsy research community. The community is inclusive and collaborative, working across clinical and scientific disciplines to learn from one another. It is really exciting to see how ambitious the research community is and focussed on the potential opportunities ahead. But most importantly, the research community is united. United in rising to the challenges epilepsy presents. United in our desire to radically advance research.

What’s next?

Next week, members of the research steering group are meeting for a ‘Shark Tank’ challenge workshop. Using a model we have developed, multidisciplinary groups of researchers will be pitching their plans for each of the four cross-cutting themes. This task will enable us to think about what resources and infrastructure we will need to deliver and sustain the #Every1EndingEpilepsy programme of work. Keep an eye out on social media for an announcement on 16th May.

In the Autumn we will be coming to the epilepsy community to help us publicise the road map and encourage institutional funders to invest in the future of epilepsy research. It will be the voices of people affected by the condition that will have the potential to have the greatest impact in amplifying our message.

In summary, it is without doubt, collaboration will be key to the success of #Every1EndingEpilepsy. Collaboration across all epilepsy research stakeholders – researchers, healthcare professionals, patient organisations and people living with epilepsy – will bring us closer to one day, ending epilepsy.

I’ve been working in the field for many years, but never before have I felt so encouraged that we will be able to finally see the epilepsy research community and people with epilepsy aligned in designing and delivering a road map that will result in the investment needed to stop the devastation this condition causes to so many lives.