Are you epilepsy confident?

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Simple measures can help schools get the right support in place for children with epilepsy, writes Catherine Hodder

Epilepsy is one of the most common long-term conditions in childhood, affecting 112,000 children and young people across the UK. You may be shocked then to learn that four in ten education professionals say they would not be able to help a student having an epileptic seizure.

Commissioned by the charity Young Epilepsy, a new survey of 600 adults working in the education sector – including teachers, administrators, and catering assistants – highlights the urgent need for education professionals to be better supported.

Eighty-eight per cent of education professionals surveyed think more needs to be done to raise awareness in schools about how epilepsy can affect children. Two-thirds of education professionals say they received no training in how to support children with epilepsy in their care, including what to do should they have a seizure. A third say they wouldn’t know when to call for an ambulance in the event of a seizure. Experts recommend you ring 999 if it lasts for more than five minutes or you know it’s their first seizure. 

Most seizures stop without the need for emergency treatment. However, it’s crucial that schools have the information they need to keep a young person safe and to know when to give emergency medication or call an ambulance. Prolonged seizures can result in a potentially fatal condition known as status epilepticus.

Misconceptions and poor information

Many of those polled were not aware of the different types of seizure a young person can experience. Three quarters were unaware that falling to the ground and getting straight back up again could indicate that a young person is having a seizure, or experiencing strange tastes and smells (55 per cent), or staring blankly as if daydreaming (29 per cent). 

Only 29 per cent knew that they should time the length of the seizure, only 17 per cent would protect them from hazards, and only 26 per cent knew to cushion their head – all essential actions to keep the young person safe. 

Commonly held mistaken beliefs were also prevalent in the survey; six in ten respondents wrongly think that a person having a seizure can swallow their tongue, and 15 per cent incorrectly believe that flashing lights will always trigger an epileptic seizure. 

A further survey of young people with epilepsy and their parents found that 37 per cent of young people do not have an individual healthcare plan (IHP) at school. These plans set out key information to ensure young people are safe and included in all aspects of school life. Since 2014, state schools in England (including academies) have been legally required to support children with medical conditions such as epilepsy so they can participate in all aspects of education.

There are more than 40 different types of seizure which affect the brain and every young person’s epilepsy is unique to them. This means it’s essential that schools have accurate, up-to-date information to keep a young person safe and adequately supported.

How does epilepsy affect learning and school life?

Epilepsy can have a significant impact on learning, even if seizures are controlled. Young Epilepsy’s 2014 research – The identification of educational problems in childhood epilepsy: The Children with Epilepsy in Sussex Schools (CHESS) study – shows that a high proportion of young people with epilepsy have difficulty in at least one area of cognition or behaviour. These difficulties are often missed because of the pressing medical needs of epilepsy. The survey results show that only four in ten IHPs include how epilepsy might affect learning.

Children with epilepsy and other conditions should be able to access all aspects of education, including school trips and sport. However, one in six young people with epilepsy are excluded from activities or opportunities at school. Some young people are unable to take part in activities due to specific medical advice. However, in most circumstances young people with epilepsy can be included with the right support in place.

Those working in education settings are facing many challenges every day, and most are doing a fantastic job. However, these latest figures show that children with epilepsy are struggling to have their conditions fully understood by the people who play an essential role in their educational and emotional development. 

Key elements of good support at school:

  • an individual healthcare plan (IHP) for each young person with epilepsy (including where seizures are controlled or only take place whilst sleeping)
  • a school policy on supporting pupils with medical conditions
  • regular communication between the school, the parents and the young person
  • staff training to ensure everyone has an understanding of seizure first aid and how epilepsy can affect young people.

Getting it right

Although families can experience challenges in getting effective support in place, many children with epilepsy are benefitting from great support at school.

“My child receives very good pastoral help and care at school”, says one parent. “All staff are regularly trained, she has had support from the school counsellor and the SENCO (and all staff) is/are very supportive of her needs. They have also offered some recent SIBs [sibling support] talk to give to her brother.”

Another parent says: “I have a meeting with the new teacher each new school year to talk about what she should know. [My daughter’s seizures are] currently controlled but as it can change the teacher needs to understand her diagnosis and the risks attached. They provide an extra teacher to solely observe her during swimming lessons. When she was first diagnosed they brought in a council nurse to help understand more what she may need while struggling with side effects. They also suggested a buddy system so a few friends would understand.”

With effective support, young people with epilepsy can thrive at school and beyond. Getting the key elements of support right can go a long way in ensuring young people with epilepsy are safe and included in all aspects of school life.

Seizure first aid

Time the seizure

  • Time the duration of the seizure.
  • Let the seizure run its course.

Keep the person away from hazards

  • Move any hazards out of the way.
  • Cushion their head.
  • Make sure nothing hinders their breathing.

Don’t restrict their movements

  • Don’t restrain them.
  • Don’t put anything in their mouth.

Stay with them

  • Reassure them.
  • Stay with them until they have fully recovered.
  • After the seizure, put them in the recovery position (if they are on the floor).

Make a record of what happened

  • Include what happened before, during and after the seizure.

Call 999 for an ambulance if:

  • they have never had a seizure before
  • they are not breathing or are blue around the lips
  • the seizure lasts more than five minutes
  • they are not responding after the seizure has stopped
  • they have sustained an injury during the seizure.

About the author

Catherine Hodder is the Policy and Advocacy Manager at Young Epilepsy. The charity has created a free online guide for schools on supporting young people with epilepsy.

 youngepilepsy.org.uk/GuideForSchools

 @YoungEpilepsy

 @YoungEpilepsy

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