The WINS study (What I Need in School) took place between 2018 and 2020 in order to understand what support measures at school are important to children and young people with epilepsy, parents and school staff. As well as speaking to these different groups, we used full psychological evaluations in order to understand the needs of children and young people who participated.
The study identified that although children with epilepsy face a higher risk of behavioural and learning difficulties, many of these children were not being sufficiently supported at school. Only 15% of participating children had received psychological support despite 60% scoring within the at-risk range on a measure of behavioural and emotional difficulties.
Parents said they often feel they are the ones who have to identify and drive support in these areas and that communication between the school, health professionals and parents was inadequate. Around 1 in 3 parents (32%) said their child’s transition from preschool to primary, or primary to secondary school was not managed well.
Both parents and staff said that epilepsy knowledge was significantly better in special schools, compared with mainstream schools.Parents told us they would like more resources to help assess children’s learning, behavioural and emotional needs and to help deliver therapeutic support in these areas.
The findings from the WINS study will help us campaign for better support at school for children with epilepsy and will inform the development of Young Epilepsy resources for school staff.
Find out more about WINS and our other research - Research Report 2020.
