Campaign: The Young Epilepsy #UnderstandMyEpilepsy campaign features Ruben, 12, who is now home-schooled after his school failed to recognise his absence seizures – one of the more than 40 different types of seizure that children with epilepsy can suffer – in the classroom and accused him of daydreaming (image: Young Epilepsy)
Headteacher Update reported earlier this year how roughly one-third of children with epilepsy are not getting the support they need to participate fully in school life – with many not even having the Individual Healthcare Plan they are legally entitled to.
The findings came from a 2021/22 survey of families conducted by Young Epilepsy, and it is this same charity that is behind the new campaign.
Young Epilepsy already offers a guide for schools focused on supporting children with the condition and the campaign is now offering more resources aimed at busting myths and increasing understanding of the condition.
The charity says that without the proper support and understanding of their individual needs, children with epilepsy are often simply left out. Its research found that 21% of pupils reported being excluded from activities and opportunities at school, with some being prevented from taking part in sports and milestones such as residential trips and school photos.
The #UnderstandMyEpilepsy campaign is aimed at highlighting the “broad variations” of the condition and how each young person must be understood on an individual level when it comes to recognising the impact on their school life.
It is estimated that 112,000 children and young people in the UK are living with epilepsy. It is one of the most common long-term conditions that affects children.
Epilepsy is a neurological condition that disrupts the normal electrical activity our brains use to communicate with the rest of the body. This disruption causes seizures. There are more than 40 different types of seizure. In most cases, epilepsy is well managed and seizures are controlled, but it is a serious condition and can be life-threatening.
Schools are required to have policies in place to ensure that children with medical conditions such as epilepsy get the support they need for full participation in school life. According to the statutory guidance (DfE, 2014), every child with epilepsy should have an Individual Healthcare Plan for school, setting out information about their condition and the support they need to be safe and included at school.
However, only 56% of young people with epilepsy currently have an Individual Healthcare Plan, according to Young Epilepsy’s research. And even for those with an IHP, only 36% included how epilepsy might affect their learning and 26% had not been reviewed in the last 12 months.
This means that teachers will not be aware of the impact of seizures, triggers or medication alongside the emotional effects of the condition. For some this can be as simple as a teacher not recognising when a student is having a seizure.
Campaign materials include:
- A free schools guide: www.youngepilepsy.org.uk/guideforschools
- Advice on challenging misconceptions: www.youngepilepsy.org.uk/get-involved/campaign-change/understandmyepilepsy
- An #UnderstandMyEpilepsy campaign film: https://youtu.be/8sGc_ixPnl0