Children with epilepsy are not getting the support they need from schools, according to a report published today.

Only half of families who have children with epilepsy say that school staff had been trained in how to support their child, the charity Young Epilepsy says.

And more than one in three children with epilepsy are at schools that do not have an individual healthcare plan (IHP) in place to support them, meaning staff may not have the information they need to recognise and deal with an emergency at school.

One parent told the charity: “I wrote the risk assessment for her swimming lessons after the blanket one they did was awful and totally useless. Her ‘watcher’ at swimming was helping another child with their hat when mine had an absence [seizure] in the pool.”

The charity is now calling for every school to put in place plans to ensure that children with epilepsy are safe and included alongside their peers. 

Every school is required to have a policy on supporting pupils with medical conditions, ensuring the support meets the standards set out in government guidance, under the Children and Families Act 2014.

The policy must cover the role of individual healthcare plans, which the guidance says may be essential in cases where there is a high risk that emergency intervention will be needed.

Plans set out what steps schools should take to help the pupil manage their condition and overcome any barriers to getting the most from their education - and may include details of the training that staff need to do this.

But the survey of 373 young people and their parents with epilepsy by Young Epilepsy found that, where IHPs were in place, two out of three plans did not consider how epilepsy affects learning, although the condition can have an impact on children’s learning and behaviour.

“It is deeply concerning that many schools in England still aren’t complying with the legislation that was intended to give parents reassurance their child will be properly supported whilst in school,” Carol Long, chief executive of Young Epilepsy, said.

She added: “Even when the right systems are in place children with epilepsy are affected by lack of understanding about their condition. We heard from one family that their child was asked to wear a sash in the playground so they could be easily identified.

“Health conditions such as epilepsy must be taken seriously in the education system. It is important that health support provided is routinely checked as part of school inspections. Schools should also be required to publish their policies online to assure parents and young people of the support that is available to them.

“Some conditions are more complex than others and it is important that every child is treated as an individual without the additional and avoidable barriers that prevent them from achieving their full potential.”

Want to keep up with the latest education news and opinion? Follow Tes on Twitter and Instagram, and like Tes on Facebook.