Epilepsy Blog UK Rebecca Bromley

Tipping Point
Once in a generation survey of the UK epilepsy community

Anna Norton
Research and Involvement Officer

Epilepsy Research UK

The response from the epilepsy community to our UK Epilepsy Priority Setting Partnership (PSP) has been extensive. This national survey 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. In this Research Blog, Anna Norton, our charity’s Research and Involvement Officer, will be explaining what the PSP has achieved so far, and what’s next.

For too long inequalities in research funding have slowed progress for epilepsy, impacting countless lives and costing the NHS billions every year. To drive the greater investment necessary to address these funding inequalities, we needed to understand and evidence the priorities of the entire epilepsy community.

In November 2021, Epilepsy Research UK launched the UK Epilepsy Priority Setting Partnership (PSP) in conjunction with the James Lind Alliance and NIHR. This once in a generation national survey has gathered the views of the entire UK epilepsy community: people living with the condition, families, friends, carers, those bereaved by epilepsy, healthcare professionals and organisations representing the interests of people affected by epilepsy and associated conditions.

This national survey is far bigger than one organisation. To ensure the UK Epilepsy PSP was truly representative, we reached out to all charities connected to epilepsy. With the help of our charity collaborators – Epilepsy Action, SUDEP Action, Young Epilepsy, Epilepsy Society and the International League Against Epilepsy (ILAE) British Branch – and our national and regional partner organisations, our collective networks have reached every corner of the UK, and we have achieved a true representation of the diversity found in the UK and its epilepsy community.

We received 2014 responses from the length and breadth of the UK – from Aberdeen to Aberystwyth, Dover to Derry, Newcastle to Newquay, Shetland to Southampton. These responses have resulted in over 5418 priorities for research. Collectively, they present a wide range of themes, from sudden unexpected death in epilepsy (SUDEP) to surgery, seizure triggers to support, side effects to stigma. The inclusivity, scale and diversity of responses to the UK Epilepsy PSP survey reflects not only the enormity of the epilepsy community, but your desire to be heard, treated equally and to drive change.

Contributing 46% of all responses, people with epilepsy were the loudest voice in the survey, while the parents, family and friends of those who have or had epilepsy collectively represent 32%.

WHAT HAPPEN’S NEXT?

With the support of the UK Epilepsy PSP Steering Group, our research team are currently reviewing and categorising the priorities received into a longlist of in-scope and currently unanswered priorities. Once identified, this longlist will be interpreted into summary questions and shared with the epilepsy research community.

To ensure the UK Epilepsy PSP continues to be truly representative, everyone must have their say in shortlisting these research questions. Every voice matters, so we will once again be asking you to get involved.

The shortlist of research questions chosen by the epilepsy community will be discussed at the UK Epilepsy Priority Setting Workshop, where representatives from across the epilepsy community will be present to discuss the shortlist and determine the Top 10 priorities for research into epilepsy.

UK Epilepsy Priority Setting Workshop details to be announced on our website and E:Bulletin shortly. Please sign up here to be the first to know.

WHY IS THIS WORK SO IMPORTANT?

Together, we are shaping the future of research into epilepsy. The priorities we publish will unite epilepsy and associated condition charities, driving collaborations between them. It will ensure that the research championed by Epilepsy Research UK and other funding bodies is rooted in the priorities of the entire epilepsy community. It will also help us to influence government and institutional funders to give epilepsy an equitable share of research investment, so innovations in the diagnosis and treatment of epilepsy will no longer lag behind other less prevalent conditions.

-Anna Norton

Find out more about the UK Epilepsy PSP and much more in our 2022 Focus Spring Newsletter here.

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