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ONCE IN A GENERATION NATIONAL SURVEY OF THE UK EPILEPSY COMMUNITY The response from the epilepsy community to our UK Epilepsy Priority Setting Partnership (PSP) has been extensive. Epilepsy Research UK Research and Involvement Officer Anna Norton shares what’s next for the PSP. 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%.
WHICH OF THE FOLLOWING BEST DESCRIBES YOU? Person with epilepsy Healthcare professional From an organisation representing the interest of people affected by epilepsy Parent of someone with epilepsy Family member or friend of someone with epilepsy Caregiver or former caregiver of someone with epilepsy Bereaved family member or friend of someone who had epilepsy Other
WHERE DO YOU LIVE?
164
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46
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1673
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109
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