Overview
The objective of the National Centre for Young People with Epilepsy (NCYPE)’s Champions for Childhood Epilepsy Campaign is to improve education, health and other services for children and young people with epilepsy across the UK. The NCYPE is working with a range of organisations to find practical solutions, tackle the gaps in services, and make a real difference for thousands of children.What is epilepsy?
Epilepsy is a tendency to have recurrent seizures which are caused by a sudden burst of excess electrical activity in the brain; this disruption results in the brain’s messages becoming confused. The condition is much misunderstood and covers a wide spectrum. The common assumption is that it causes violent seizures, but these ‘tonic clonic’ attacks are just one form it can take. It is just as important to understand other, more subtle, forms such as ‘absences’ lasting just a few seconds.
At the NCYPE, our Mission is to enable better futures for children and young people with epilepsy. We are the UK’s leading provider of specialist education and health services to those most severely affected by epilepsy but our goal is to support all 60,000 children and young people in the UK with epilepsy, however mild or severe their condition.
The Champions for Childhood Epilepsy Campaign complements the NCYPE's expanding outreach and research activities which includes an internationally renowned research programme. Our Childhood Epilepsy Information Service provides expert information, training and support for professionals, parents and young people themselves. It is now expanding the courses available for health and education professionals and developing a National Schools Programme, beginning in the south east of England, to deliver awareness training to school staff and students.
Why is improvement so necessary?
Epilepsy is the most common neurological condition amongst children and young people, affecting around one in every two hundred in the population: approximately 60,000 young people in total in the UK. On average there is one child with epilepsy in every primary school, and five with epilepsy in every secondary school.
Although the national numbers can be calculated, local and regional numbers are not. For example, a recent Epilepsy Action survey found only 18% of Primary Care Trusts could even estimate how many children and young people in their area had the condition, making it very difficult for them to plan appropriate services for this important group.
Formal Clinical Guidelines from the National Institute for Health and Clinical Excellence (NICE), already exist but are not implemented in many areas. This means that …
- children who have had seizures are typically referred to general paediatricians, rather than paediatricians with training and expertise in epilepsy;
- misdiagnosis is an issue - up to 40% of children referred to a specialist clinic did not have epilepsy when fully assessed;
- children and young people with epilepsy have a poorer quality of life than children with other long term conditions such as asthma;
- over half of the deaths of children and young people with epilepsy are possibly or potentially avoidable;
- too few children are offered, or referred early enough for, the surgery which could cure their epilepsy or reduce their seizures.
Furthermore, there is no reason to believe that the following findings from research into all those with epilepsy are not equally true for children and young people with epilepsy:
- only 18% of those recently diagnosed with epilepsy had their first consultant’s appointment within the NICE recommended two week referral period;
- over 50% of those with epilepsy which is resistant to treatment would benefit from a review by an expert.
Epilepsy and the impact on education
Children and young people with epilepsy are at risk of missing some or all of an education activity whilst they have a seizure, and are likely to be sent home from school immediately after a seizure when this may not be necessary. During ‘absence’ seizures, one of the most common seizure types in children, the child may not appear to be affected and staff may not be aware of the seizures. A child may experience many seizures during one lesson and, as consciousness is lost for a brief period in this type of seizure, this can have a devastating impact on the child’s education. Furthermore, anti-epileptic drugs themselves can cause drowsiness and confusion.
Studies in the USA concluded that academic underachievement is common in children with epilepsy and that half of children with epilepsy significantly underperform compared to their IQ.
A survey in the UK showed that half of the parents of children with epilepsy believed that their child regularly had difficulties completing classwork or homework because of their epilepsy. A third of parents felt their child’s school attendance was significantly affected by their epilepsy. It is not surprising therefore that three-quarters of schools recognised that all members of staff would benefit from learning more about epilepsy.
Professor Brian Neville has commented on the negative educational impacts of epilepsy: “As well as the potential for seizures to make the child miss lessons, epilepsy can cause short- and long-term memory problems or difficulties with concentration and reduced learning and information retention. Often teachers don’t fully understand why a child may appear to lack effort and attention and achieve poorly. Variable behaviour can be misinterpreted as being wilful.”
A child’s health and education cannot be separated and one researcher concluded in relation to children with epilepsy: “It is therefore important for health professionals and educators to regularly assess the child’s academic functioning and school performance to identify those at risk for problems. Health professionals and educators need to collaborate on assessment and interventions to help maximize child academic success.”
The personal, social and economic impacts of poorly diagnosed or managed epilepsy are enormous. The NCYPE believes it is time for change and, as well as seeking support from a range of organisations including central government and regional and local agencies, the NCYPE has created two Champions for Childhood Epilepsy Campaign action plans to make a real difference on the ground – one to improve health services and one to improve education services.
The NCYPE is keen to work with organisations which provide or influence services for children and young people with epilepsy.
We would also like to hear from children, teenagers, and their parents or carers who want to be involved in the campaign or want to share their experiences of education and health services.