Support at school for children with epilepsy

The first step to making sure your child is safe at school is to talk to the school about their epilepsy. It’s a good idea to let school know even if your child is waiting for a diagnosis. Schools don’t need a formal diagnosis to put support in place.

You could ask to have a meeting with your child’s teacher or the Special Education Needs & Disabilities Coordinator (SENDCo). In Wales, this role is an Additional Learning Needs Co-ordinator (ALNCo). In Northern Ireland, it’s a Special Education Needs Coordinator (SENCo).

The meeting will give you a chance to tell them everything they need to know about your child’s epilepsy. This is likely to include information about:

• What type of seizures your child has and what happens during them
• How to deal with a seizure and what support they need afterwards
• When a seizure becomes an emergency
• Any triggers for your child’s seizures
• Any medicine they may need at school
• How time off school will be managed
• Requirements for extra time to complete exams
• Additional support in catching up with lessons

The school may record all this information in an Individual Healthcare Plan.

Individual Healthcare Plans (IHP) have different names depending on which part of the UK you live in. It’s a written plan with information about your child’s epilepsy and the support they need at school.

Some children with epilepsy might not need an IHP. But if you think your child’s epilepsy could affect them at school, it’s a good idea to have one. The impact of seizures, medication, or living with epilepsy can affect how your child copes at school. For example, sleep seizures could mean they have fatigue or difficulty concentrating during the day.  Difficulties with learning are common in children with epilepsy for lots of different reasons.

The school should work with you and your child to write the IHP. They may also ask healthcare professionals involved in your child’s care. This could be your child’s epilepsy specialist, epilepsy specialist nurse or GP.

The school should review your child’s IHP every year, or earlier if your child’s epilepsy or needs change.

There’s no standard format for IHPs, so schools can draw up their own. There are lots of online templates. Or your school could use our template for children with epilepsy.

IHP template for children with epilepsy

IHP prompt questions

School staff need to know how to recognise your child’s seizures and what to do if they have one. Your child’s IHP should give detailed information about their seizures and what first aid they need. The IHP should be easy for all members of staff to find and use if they might be with your child when they have a seizure.

The IHP should also say what school should do after your child has a seizure. For example: does your child need a place to rest before getting back to their lessons, or do you want school to call you so you can pick them up? If your child needs to go to the school office or medical room, they should not go there alone. School staff should make sure that a suitable person, such as an adult or a responsible pupil, goes with them.

Emergency situations

Most seizures are not a medical emergency. But it’s important for school to know what an emergency is for your child and what to do if it happens. This information should be included in your child’s IHP and all staff in contact with your child must be familiar with it.

If you’re not sure what an emergency situation is for your child, ask their specialist or epilepsy nurse. But as a general rule, it’s an emergency if:

• A tonic-clonic seizure lasts for longer than 5 minutes
• Your child has one tonic-clonic seizure after another without regaining consciousness in between
• They are severely injured as a result of a seizure

Training and awareness for staff and pupils

The school should make sure staff have training to understand epilepsy and how to manage seizures at school. They should also make sure other pupils know to contact a member of staff immediately if your child has a seizure.  We have resources to help:

Face-to-face awareness training for school staff and pupils

Online awareness training for school staff and teachers

Classroom resources for primary schools

Recording seizures

The school should keep a record of any seizures that your child has at school and share this with you. They could record them in your child’s IHP or a seizure diary.

If your child needs to take their medicine during school hours (perhaps because they need to take it 3 times a day) the school should support them to do this.

If your child has emergency medicine for prolonged seizures, the school must make sure staff get training to give it. They should make sure enough people are trained to cover staff absences. Any staff who are trained to give your child emergency medicine should be named on their IHP or their emergency medicine care plan.

If your child has an epilepsy specialist nurse involved in their care, they may be able to visit the school to provide training. Or the school may be able to arrange it through the school nurse service, local community nursing team or a private training provider.

The school should store your child’s emergency medicine in a secure place that is easily accessible in an emergency. Sometimes older children are allowed to carry their own emergency medicine, so it’s always with them. Each school will have their own policy about this and it will need to be recorded in their IHP.

Your child should be allowed to take part in all school trips and activities, including those with overnight stays. The school should not stop them from taking part in any activities, unless their doctor says it would be unsafe, and there is no way of making it safe.

Most children with epilepsy are likely to be classed as disabled under the equality laws in the UK. This means it’s against the law for a school to treat them less well than non-disabled children, unless there is a good reason. If a school says that your child can’t take part in an activity because of their epilepsy, this could be disability discrimination.

When the school is planning a trip or activity, the organisers should do a risk assessment for your child. This will give them the opportunity to look at what extra help your child might need because of their epilepsy.

The school should use the risk assessment to work out what they can do to help your child take part fully and safely. This may involve being flexible and making reasonable adjustments. The school has a duty to make reasonable adjustments so that a disabled child is not disadvantaged. For example, having an extra adult on a trip who could take care of your child if they had a seizure.

Epilepsy Action’s checklist for school trips can be used to help to complete a risk assessment.

You have a very important role in helping school to provide your child with the support they need. Here are some ways you can help:

• Keep the school up-to-date with detailed information about your child’s epilepsy and needs. This is especially important if there are any changes in their condition or treatment
• Find a way to communicate important information with the school that works for both of you. This is likely to include you and school staff being able to record information on a daily basis. Some people use a communication book for this
• Make sure you carry out any responsibilities listed in your child’s individual healthcare plan
• Go to all the meetings that you are invited to. Try to think beforehand about any information you can provide that will be helpful
• Make sure that the school are easily able to contact you, if there is an emergency
• If it is needed, make sure that the school has the correct emergency medicine. This needs to be in date, clearly labelled and in the correct container
• Make sure your child knows who to tell if they get a warning of a seizure