Policies & reports

The aim of this project was to hear about the experiences of managing epilepsy care from children, young people, and families from groups which may be more likely to face marginalisation. Our focus was particularly on children and young people with epilepsy from Black and minority ethnic communities, those living in deprived areas, and those with a co-occurring neuro diverse condition and/or a learning disability.

• Social research
• Healthcare

Between October 2019 and January 2020, Epilepsy Action worked with Epilepsy Society and Young Epilepsy to conduct another survey of women who have taken or who are taking valproate, since the introduction of the Pregnancy Prevention Programme (PPP)

• Social research
• Physical activity

Young Epilepsy survey of young people with epilepsy and their parents and carers to find out whether schools are providing support that complies with Government standards.

• Social research
• Education

An in-depth study to gain an understanding of the views of children with epilepsy, their parents and staff regarding inclusion and participation of children with epilepsy in school.

• Social research
• Education

People who are autistic and have epilepsy face some of the starkest inequalities in the world. We know that worldwide approximately 8.4 million people have both conditions. On average, they have poorer quality of life, poor health and can die early. We’ve known this for years, but a lack of evidence-based strategic action has blocked progress.

• Social research
• Physical activity

People who are autistic and have epilepsy face some of the starkest inequalities in the world. We know that worldwide approximately 8.4 million people have both conditions. On average, they have poorer quality of life, poor health and can die early. We’ve known this for years, but a lack of evidence-based strategic action has blocked progress.

• Social research
• Physical activity

This report seeks to gain an understanding of the views of young people with epilepsy, their parents and school staff regarding educational and therapeutic provision, understanding of epilepsy and seizure management in schools

• Social research
• Education
• Physical activity

Young Epilepsy surveyed young people with epilepsy (aged 11 to 25) about their experience of epilepsy care and how this has changed as they have grown older and transitioned to adult services.

• Social research