WHAT IS THE UK EPILEPSY PSP?

Have you ever wondered why research on an area of epilepsy that affects you has not been a priority? Have you ever wondered how you could draw attention to this? Have you ever wondered how your opinion would make a difference?

If any of the above has occurred to you (or even if it hasn’t) then we want to hear from you. This national survey will collate the views of the entire epilepsy community – healthcare professionals, epilepsy charities, people living with epilepsy, their families, friends and carers, and those bereaved by epilepsy. The information gathered will help identify and prioritise areas of healthcare that can be improved by research and result in higher quality studies and increased investment.

The rigorous JLA PSP process reveals the Top 10 research questions for a particular condition, in our case epilepsy. The responses to the survey will highlight areas that are important to those affected by the condition in question, but it does not require individuals to come up with specific research questions.

The Top 10 may include broader areas of interest, where patients, carers and health professionals have agreed a need for research exists. Researchers and funders can then prioritise the most meaningful research for those who need it most.

The scope of the UK Epilepsy PSP will be defined by the health research priorities of people affected by epilepsy:

  • Causes: to include prevention and co-morbidities
  • Diagnosis: to include access to health services
  • Treatments: to include anti-epileptic drugs, surgery, treatment side effects, co-morbidities (including those as a consequence of treatment), and epilepsy that does not respond to treatment
  • Clinical management of epilepsy: to include risk of epilepsy-related deaths (including Sudden Unexpected Death in Epilepsy – SUDEP), service access, neurodevelopment, co-morbidities, social and psychological factors, and emerging areas such as epilepsy in older people
  • Dissemination of research breakthroughs to influence epilepsy care, practice and policy: to include medical education and pathways to improved care

Epilepsy Research UK has committed the funds and resources to undertake the programme and has brought together a steering committee that includes clinicians from across the United Kingdom, key epilepsy charities and people with a personal connection to epilepsy. Once the survey is live, we will be contacting all the major patient groups covering associated conditions and rare epilepsies. We want to reach as many people as possible, from every walk of life, and every corner of the country to ensure we receive representative responses from the entire epilepsy community.

Meet the steering committee

Samantha Ashby

Caoimhe Bennett

Hannah Cock

Katherine Cowan

Anne Coxon

Jon Dickson

Michael Kinney

Tony Marson

Andree Mayne

Tom McLaughlan

James Mitchell

Anna Norton

Rosemarie Pardington

Angie Pullen

Rohit Shankar

Maxine Smeaton

Rhys Thomas

Phil Tittensor

Sukhvir Wright

Alice Yandle

Sameer Zuberi

The last JLA priority setting exercise in epilepsy was undertaken over 12 years ago by Dr Rhys Thomas, Consultant Neurologist and Neuroscientist, with the Wales Epilepsy Research Network. Dr Thomas will lead the steering group for the 2021 initiative.

A new study is long overdue, the outcomes of which would benefit people living with epilepsy by providing the evidence of need and priorities to support research development. We know that PSPs can lead to increased funding from NIHR, which is so urgently needed for epilepsy, given the shocking inequalities in research funding.

Dr Rhys Thomas

WHY IS THIS THE MOST IMPORTANT SURVEY YOU’LL EVER COMPLETE?

QUESTIONS?

DOWNLOAD OUR FAQS SHEET

Please contact Anna, Research & Involvement Officer, at [email protected] to request any of the following:

  • The survey in a different language
  • The survey in a different format (eg, paper copy or braille)
  • If you prefer to dictate your answers to the survey over the phone – a member of the Epilepsy Research UK team will assist