What is epilepsy?
Epilepsy is one of the most common neurological conditions in the world. It can affect anyone of any age, gender, race or ethnicity. It is characterised by seizures which are caused by excessive electrical activity in the brain, the effects and impact of which vary depending on which part of the brain is affected. There are 600,000 people in the UK with a known diagnosis of epilepsy. Shockingly, there are 21 epilepsy-related deaths every week.
What is the UK Epilepsy PSP?
The UK Epilepsy Priority Setting Partnership (PSP) is a national survey collating 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 in research into epilepsy.
The scope of the UK Epilepsy PSP is as follows:
- 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 UK, key epilepsy charities and people with a personal connection to epilepsy.
The initial question gathering survey opened in November 2021.