- 95% of UK children with epilepsy struggle in at least one area of learning or behaviour
- 40% are functioning in the learning disabled range
Young people with epilepsy are unnecessarily falling behind at school and beginning their adult life at a disadvantage, according to research to be launched in Parliament today (March 24) by education and medical charity Young Epilepsy.
The findings show that 95% of UK children and young people of school age with epilepsy struggle in at least one area of learning or behaviour, and 40% are functioning in the learning disabled range.
Epilepsy is the most common childhood neurological disorder. On average there is one diagnosed child in every primary school and five in every secondary school.
The research proves for the first time that children with epilepsy have a very high rate of cognitive and behavioural difficulties. It also demonstrates that they are often not receiving the support they need in schools. This leads to further deterioration of their academic results and frustration and misery in families.
The Children with Epilepsy in Sussex Schools (CHESS) study, led by the former Prince of Wales’ Chair of Childhood Epilepsy, Professor Brian Neville, and carried out by researchers from Young Epilepsy, Crawley Hospital, Gothenburg University, UCL Institute of Child Health, Great Ormond Street Hospital, Dartmouth College and the University of Edinburgh, was conducted to better understand the difficulties experienced by students with epilepsy and offer recommendations to help schools assess their needs and manage their progress through school.
These include a new practical assessment tool – ABLE – which is designed to help teachers, school nurses, children and their families work together to understand the health, educational and behavioural problems the child is facing.
It coincides with the passing into law of the Children and Families Act, which requires additional support for children and young people with long term medical conditions such as epilepsy. It places a new statutory responsibility on schools to provide support plans which cover their health, educational and behavioural needs.
Young Epilepsy Acting Chief Executive Lisa Farmer said: “Young Epilepsy welcomes the Children and Families Act but now the right actions need to be taken to get the right outcomes for pupils with epilepsy. It is now proven that epilepsy profoundly disrupts learning and we will not rest until every child with the condition has high quality support and is able to reach their potential at school.
“We are offering information, guidance and practical help so teachers can feel confident and get the best out of their pupils. We also want all teachers trained so there is a step change in the way pupils with epilepsy are treated at school and an end to the misery and frustration they are currently experiencing.”
Young Epilepsy will launch its Manifesto for Change in Parliament today (March 24) which calls for:
- All pupils with epilepsy to receive high quality assessment and support which is informed, personalised and not subject to postcode lottery.
- Every parent and pupil to know what they are entitled to and schools to offer them Young Epilepsy’s new ABLE assessment tool to help define their needs.
- Teacher training to include epilepsy and its impact on learning and behaviour.
At the launch, Baroness Sal Brinton, Liberal Democrat Health Spokesperson (House of Lords), will urge MPs, Councillors, school governors, headmasters, teachers and parents throughout the UK to respond to Young Epilepsy’s manifesto. Baroness Brinton said: “Without the right support systems in place, we are standing by as young people with epilepsy struggle unnecessarily at school. They need help and teachers need the right information and training to teach them effectively. With the guidance of charities such as Young Epilepsy, and the commitment of everyone involved, we can ensure that all young people are given an equal opportunity to build a successful future.”
Young Epilepsy is a charity working exclusively on behalf of the 112,000 children, teenagers and young people aged 25 and under living with epilepsy. Find out more at www.youngepilepsy.org.uk