Charity Young Epilepsy insists on more support

The National charity Young Epilepsy, insists the government must act on school school support for children with epilepsy

A petition launched by Young Epilepsy is calling for UK governments to ensure that schools have a current Individual Healthcare Plan in place for every child living with epilepsy.

Sign the petition Every child with epilepsy deserves to be safe and included at school | Young Epilepsy

Without an Individual Healthcare Plan (IHP) seizures are being missed or mistaken for children not paying attention. School staff are unaware of what to do when a seizure happens. Children are unnecessarily excluded from learning, sports, and trips.

Current guidelines simply do not go far enough to ensure this vital tool is put in place for every child. The Young Epilepsy petition aims to change that and insist that governments take responsibility for ensuring that schools have a current IHP in place for every child with epilepsy.

A recent survey by the charity, found worrying disparities across the UK in school policies and support for young people living with epilepsy.

1 in 3 young people or parents reported not getting the support they need for full participation in school life.

Children like 11-year-old Ruben are let down by an inadequate system in which their epilepsy and the impact on their lives is often misunderstood.

‘I had to leave the school that I loved. It hurt me. I just wasn’t treated as fairly as the other students.’  Ruben, 11 years old

Without accurate information about how epilepsy impacts him, Ruben’s seizures were mistaken for daydreaming and after reports of behaviour issues and sanctions from his school, he ultimately had to leave mainstream school and is now homeschooled.

Ruben explains, ‘I left because my teachers just didn’t get my epilepsy. I have absence seizures which means I will lose my train of thought. I stare blankly for about 10 seconds, maybe five, depends.

Some of my teachers would think that I was just daydreaming. I would get detentions and sanctions and stuff, and I’d miss out on play time. I just wasn’t treated as fairly as the other students.’

Schools in the UK are already required to have policies in place to ensure that children with epilepsy (and other long-term conditions) get the support they need for full participation in school life.  One of the most effective tools to achieve this is an Individual Healthcare Plan (IHP), setting out information about their condition and the support they need to be safe and included at school.

Yet for many children and parents, the system fails, as findings show that nearly half of young people with epilepsy don’t currently have an Individual Healthcare Plan (IHP).

IHPs are a lifeline. They help school staff understand each child’s epilepsy, ensure their safety, and pave the way for full inclusion in every school activity. Without this, school staff are left in the dark about how to recognise and respond to a child’s seizures and what support they need at school to keep them safe and included.

“School had no care plan in place despite being informed of his condition 3 years ago. Support has been shocking.” (Anonymous parent)

Even for those with an Individual Healthcare Plan there were still 64% that did not include how epilepsy might affect their learning and 26% had not been reviewed in the last 12 months.

Without the proper support and understanding of their individual needs, children with epilepsy are often simply left out, leading to a very different school experience to their peers.

As one parent shared, ’They think the different colours contribute to his seizures, colours do NOT at all. I’ve explained this to them. They still don’t allow him in the coloured playgrounds. This is where children of his own age are, he is being separated from peers for no good reason. This is making him sad, depressed and lonely.’

1 in 5 young people reported being excluded from activities and opportunities at school, with some pupils being prevented from taking part in sports and important milestones in school life, such as residential trips, prom and school photos.

Heart-breaking comments show the effect of these decisions on young people living with epilepsy,

‘I wasn’t allowed to do any PE or the like all year even though given the okay by the doctors and medical team.’ (Young person)

Young people with epilepsy have a right to an inclusive education just as any other child in the UK and the stark contrast between the way long-term health conditions are treated by schools across the country tells a worrying tale of mixed messages and a lack of understanding about how epilepsy affects young people.

The framework to remedy this already exists, but as is evident it is not being properly implemented meaning that young people are being denied opportunities and ‘falling through the cracks’.

Training and support for schools across the UK is available from Young Epilepsy with a free online Guide For Schools including information on supporting young people with epilepsy to ensure they are safe and included in all aspects of school life.

Over 1,000 families from across the country responded anonymously to the survey from Young Epilepsy around the support they received at school during the 2021/22 academic year. View the full report at Epilepsy support at school survey 2023 | Young Epilepsy .

Young Epilepsy provides a host of information and support for young people, families, professionals and more on their website www.youngepilepsy.org.uk

About Young Epilepsy:
Young Epilepsy is a registered charity in England and Wales (no. 311877) and is the operating name for the National Centre for Young People with Epilepsy (NCYPE) at St Piers Lane, Lingfield, Surrey, RH7 6PW.

Young Epilepsy supports children and young people across the UK through online and outreach services, campaigning and policy work and information services.

The national charity also provides a range of health and support services for children and young people with epilepsy and related conditions.  Specialist diagnostic services are available from their healthcare facility in Lingfield, Surrey.

Young Epilepsy also carries out research into childhood epilepsies in partnership with Great Ormond Street Hospital and UCL GOS Institute of Child Health.

About epilepsy:
There are over 100,000 children and young people in the UK living with epilepsy.

Epilepsy 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 over 40 different types of seizure and every young person’s epilepsy is unique to them. In order to be diagnosed with epilepsy, a young person must have had at least two seizures.

In most cases, epilepsy is well managed, and seizures are controlled, but it is a very serious condition and can be life-threatening.