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 is collating the views of the entire UK epilepsy community including people living with the condition, families, friends, carers, those bereaved by epilepsy, healthcare professionals and charity or patient organisation representatives. The priorities we are gathering will enable us collectively to:

Fund research based on evidenced priorities that matter most to people affected by epilepsyDrive collaborations with associated condition charitiesGenerate the evidence needed to influence government and institutional funders to give epilepsy an equitable share of research funding for epilepsy

 

We need your help

I am getting in touch to ask you to join us in sharing the UK Epilepsy PSP survey with your supporters and membership. By doing so you will enable the survey to build a more complete picture of the priorities of the epilepsy and associated condition community, which will provide more accurate evidence of need to convince funders to invest in research into epilepsy.

 

To ensure the UK Epilepsy PSP is truly representative, everyone must have their say. We want to hear from people living with and working in epilepsy, including rare epilepsies and associated conditions, and their families and carers. Whilst we have had an excellent response to the survey, we do need to highlight that we have had a limited responses from men, ethnic minorities, people aged 25 and under, and people aged 65 and over.

 

Our communications team have found the following methods most effective to promote the project:

Our E:bulletins have generated the most responses. Single issue emails, featuring just the PSP and with one survey link, have performed bestRegular social media posting – Facebook has been the most successful mediumOur website news piece about the PSP and linking to the PSP survey page also received good engagement

 

We have created a ‘UK Epilepsy PSP Launch social media toolkit’ which contains supporting materials and resources to assist you with any publicity, which can be found here.

 

We are acting now to ensure that innovations in the diagnosis and treatment of epilepsy and associated conditions will no longer lag behind other conditions.  The priorities of your community are an essential component of this programme of work.

 

Thank you so much for taking the time to consider this request, and please do not hesitate to contact us at ukepilepsypsp@eruk.org.uk.