Introduction
Research shows that children and young people with epilepsy can be at a disadvantage in education. This is partly due to the lack of understanding and awareness of teachers and educational professionals, but also such as the impact of seizures and medication.
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About epilepsy
Epilepsy and education
Epilepsy is defined as a tendency to have recurrent seizures caused by a sudden burst of excess electrical activity in the brain. There are around 40 different types of seizures, some of which are more common in children.
Over 456,000 people have epilepsy in the UK, with around 60,000 under 18. Epilepsy Action’s work within the education sector aims to ensure that the correct provision and support is in place for children and young people with epilepsy. Epilepsy Action believes all individuals with epilepsy should be supported to reach their full potential.
Epilepsy can affect an individual’s ability to reach their full potential. For children and young people with epilepsy there can be educational impacts, both from the condition itself or the medication used to control it. Seizures can make pupils miss lesson time and medication can affect memory, concentration and information retention.
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Epilepsy and education facts and stats
The challenges
Epilepsy Action Edwards
• In the UK epilepsy affects 1 in 242 young people under the age of 18.
We believe there are three main challenges facing pupils with epilepsy in education.
• The majority of individuals will be educated in mainstream schools.
• Lack of understanding of epilepsy as a condition.
• Roughly a quarter of those known to learning disability services have epilepsy.1
• Lack of training on emergency procedures and medication.
• Half of children with epilepsy are estimated to be under-achieving academically in relation to their intellectual level.2
• Lack of understanding of the implications on academic achievement.
The Edwards is a national scheme launched to recognise schools that are going the extra mile in supporting pupils with epilepsy. Depending on the school, its resources and its approach, this can be done in a number of ways. In 2010, 13 schools were presented with an Edward for the work they are doing to support pupils with epilepsy.
• Even in children whose epilepsy is well-controlled, the effects of the powerful drugs they take can affect their educational attainment.3
1B ell GS, Sander JW.The epidemiology of epilepsy: the size of the problem. Seizure 2001; 10(4):306-314
This document showcases the winners to show why supporting pupils with epilepsy is the key to helping them reach their full potential. Each school had certain strategies and procedures in place alongside some interesting innovative ideas.
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The following terms might be useful while reading this document.
Individual education plan (IEP) An IEP is a way of recording any extra help a pupil needs or is receiving through the special educational needs (SEN) framework. It sets out strategies to be used to meet the child’s needs. It helps ensure they are supported to reach their full potential.
Individual healthcare plan (IHP) An IHP is a plan that should be written even if the pupil’s seizures are well controlled. The IHP ideally is written with a school representative, parents, the pupil (where possible), and relevant healthcare professionals, for example an epilepsy specialist nurse or school nurse. It should include information such as types of seizures, medication, triggers, and how long a typical seizure might last.
Ketogenic diet The ketogenic diet is a high fat, adequate protein, very low carbohydrate diet which is individually calculated for each child. The ketogenic diet is an alternative medical treatment for children with difficult-tocontrol epilepsy.
Vagus nerve stimulation (VNS) VNS is a treatment for epilepsy where a small generator is implanted under the skin below the left collar bone. This is connected to a lead with three coils at one end. These coils are wrapped around the vagus nerve in the left side of the neck in a small operation. The VNS stimulates the vagus nerve at intervals to reduce the frequency and intensity of seizures.
Our hope… This document highlights some of the good practice in schools across the UK. We believe all schools have a duty to support pupils with epilepsy. There are some simple strategies and procedures that can be adopted to ensure your school is supporting pupils with epilepsy. The case studies that follow range from pre-schools through to secondary, in both city and rural settings, and with between 43 and 1,203 pupils. This shows that it’s possible to support pupils with epilepsy no matter what kind of school you are. Explore this document further to see what schools are doing to make sure their pupils with epilepsy are well supported.
2 The Epilepsy Task Force, Burden of Epilepsy; a health economics perspective, Joint Epilepsy Council, 1999 3 Effects of anti-epileptic drugs on learning.
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Airedale High School Castleford, West Yorkshire
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School profile Age group: 11-16 Number of pupils: 993 Secondary school
Strategies implemented
Key elements
• Training is given to all staff members including information such as: first aid for seizures; key epilepsy facts; managing learning in pupils with epilepsy; and ways of preventing stigma.
All-staff training.
• Training in how to administer emergency medication has been undertaken by a several members of staff. This gives confidence not only to pupils and parents, but also to the staff team. • In conjunction with training, teachers are able to closely monitor academic achievement and identify if there are any issues impacting on pupils learning. • Airedale includes pupils with epilepsy in school activities and on school trips. This relies on proper planning and risk assessment of the activity to ensure that any precautions can be arranged.
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Establishing parental confidence. Total inclusion for pupils with epilepsy.
Amy’s story Amy is 12 years old. She was diagnosed with epilepsy when she was six. Since joining Airedale, Amy has grown in confidence and has learned to accept her epilepsy thanks to her school’s continuous support. She has been supported to bring her education back in line. Amy has been on a residential visit since being at Airedale, which was great for her to experience along with her peers. Airedale caters for her every need and there is nothing that she can’t do.
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Barrowby Pre-School Lincolnshire School profile Age group: 2-4 Number of pupils: 35 Pre-school
Strategies implemented
Key elements
• All staff receive annual epilepsy training, delivered by the local nursing team. The delivery of this training ensures members of staff are up to date and well informed. This also allows new members of staff to receive timely training.
Annual all-staff training.
• The pre-school holds open training sessions where possible and invites others to attend and learn more about epilepsy. • The pre-school kitchen staff were included in discussions of ketogenic diet requirements and they incorporate foods on to the pre-school menu where possible.
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Understanding and facilitation of the ketogenic diet.
Gabriel’s story When Gabriel, who is nearly four, joined the pre-school, all staff made a huge effort to learn about the condition and find ways to proactively support him. The pre-school provides one-to-one care and are now taking a very active role in Gabriel’s transition to primary school. His key worker has volunteered to attend his induction to support him. Through actions such as these Barrowby is giving Gabriel the best opportunity to thrive in his next steps in education.
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Brimble Hill Nursery and Primary Swindon School profile Age group: 2-11 Number of pupils: 73 Special school for children with severe learning difficulties and complex health needs
Strategies implemented
Key elements
• School staff are well trained in dealing with seizures.
All-staff training in epilepsy awareness and administering of emergency medication.
• Each pupil with epilepsy has an individual education plan in place which is written in conjunction with the school nurse and the epilepsy specialist nurse.
IHP written for each pupil.
• Training sessions are held on the administration of emergency rescue medication, and sessions are arranged to communicate any updates that staff need to know.
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Finlay’s story Nine-year-old Finlay has been a pupil at Brimble Hill School since he was four. Finlay has had epilepsy from birth and, although his seizures are now more controlled, there is still a possibility he will have a seizure at school. Finlay has been hospitalised at times in line with his IHP. It is reassuring for his parents that teachers have received training and they know that while he is at school he is in safe hands. All the teaching staff are confident and efficient at providing epilepsy care and management, which provides an excellent supportive learning environment for the pupils.
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Chapelgreen Primary School Queenzieburn, Scotland School profile Age group: 5-12 Number of pupils: 43 Primary school
Strategies implemented
Ruth’s story
• All school staff have received training from a paediatrician at the local hospital so that in the event of a seizure, all staff know what to do.
Ruth is five years-old and has had epilepsy since she was a baby. She has four different types of seizures and, at one point, was having up to 60 seizures a day.
• All telephones in the school have a script beside them to make sure staff get the right help in an emergency.
Ruth has an Additional Support Needs Auxiliary who has her medication with her at all times. Ruth has an ‘angel’ cushion which is taken everywhere to protect Ruth’s head in the event of a seizure. Ruth needs oxygen within 10 minutes of a seizure starting and she can turn blue and be unconscious for up to 30 minutes. This is on site, ready to be accessed.
• Good communication with parents through regular meetings providing updates.
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• After risk assessments alterations were made to the school buildings, such as replacing metal coat hooks with plastic hooks.
Ruth’s mother and an occupational therapist walked around the nursery and school to risk assess each area she would be accessing. The school have provided a special seat for the toilet and have had the door turned to open outwards, so that she can’t block it shut if she has a seizure in the bathroom. The school also know that Ruth will not always need to go home if she has a seizure so a bed is available to give her time to recover.
Key elements All-staff training. Parental involvement. Risk assessments.
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Heather Avenue Infant School Norwich, Norfolk School profile Age group: 4-7 Number of pupils: 100 Infant school
Strategies implemented • Staff at Heather Avenue receive extensive training in epilepsy from the school nurse, including awareness of the signs of seizures. All staff are informed of each individual child’s epilepsy. • Individual healthcare plans are developed for each pupil on enrolment to the school. • An individual education plan is written for those who need one, to ensure they are receiving the right support to achieve. These are updated according to changes to the pupil’s epilepsy and needs. • The school has adopted an innovative emergency ‘red cube’ system. All staff have a red cube clipped to a chain around their neck. The children are taught that, in an emergency, they are to take the red cube to another member of staff who will come to the incident
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immediately. This method was highly commended by a County Advisor. He has since recommended it to other schools. • Epilepsy-specific curriculum resources have been developed to teach pupils about the causes and effects of epilepsy and to help them understand the condition and remove stigma.
Key elements All-staff training for epilepsy awareness. Educating the whole school and providing the opportunity for open discussion about epilepsy
Caitlin’s story Caitlin was enrolled at Heather Avenue when she was diagnosed with epilepsy at the age of five. The school played a fundamental part in the diagnosis of her epilepsy, by noting any seizure activity and changes in behaviour. The school worked very closely with Caitlin’s parents during diagnosis and continues to do so. The school liaises with her healthcare professionals and follows advice they are given, ensuring her IHPs are altered or any changes are recorded. Caitlin is fully involved in school life, from everyday classroom activities to school trips, playtime to assemblies. Her needs are always carefully considered and catered for.
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Kirktonholme Primary School East Kilbride, Scotland School profile Age group: 5-12 Number of pupils: 383 Primary school
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Strategies implemented
Key elements
• All teaching and support staff received an epilepsy awareness session, through Epilepsy Connections’ Schools Project.
All-staff epilepsy training.
• Pupils are educated through story time sessions to improve their understanding of epilepsy, seizures and what to do if someone has a seizure.
Pupil education.
• Staff are trained in the administration of emergency rescue medication from the local paediatric epilepsy specialist nurse.
Kirktonholme Primary School has consistently sought to provide the best environment for eight-year-old Calum. Calum was on the ketogenic diet and catering staff met with his parents to understand why he must eat everything supplied from home. Dinner hall staff make sure he finishes all of his meals and snacks.
• An individual healthcare plan is developed for pupils with input from the local paediatric epilepsy specialist nurse. • Strong communication between the school and parents/carers is developed by regular meetings. By working together problems are discussed and addressed.
Communication between parents and school.
Calums’s story
The school recognises that, for Calum, epilepsy is not simply about seizures. He receives additional support for his learning, with one-to-one classroom
support at all times. This encourages him to stay ‘on task’ as his concentration and memory can be poor, depending on seizure activity and medication. The school has recognised, over time, that his learning, social skills and behaviour are better when he works in small groups, or directly with an adult. This has been accommodated within a mainstream environment, and is continually under review to ensure that the most appropriate strategies are used.
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Lynsted and Norton Primary School Lynsted, Kent School profile Age group: 4-11 Number of pupils: 105 Primary school
Strategies implemented • Members of staff have received epilepsy training including seizure awareness, implications for learning and receive specific information if pupils have a particular need as a result of their epilepsy. • Most of the school staff have received training to administer emergency medication. • When pupils are enrolled to the school an individual healthcare plan is produced for the pupil by the school nurse and parents. • Each pupil’s support needs are assessed for pupils with epilepsy and individual education plans are written, identifying any additional resources that may be needed. • Whole school assemblies are held to educate the school about epilepsy and teach pupils what to do if a friend were to have a seizure at school. 18
• Fundraising activities have been incorporated into the school calendar to raise awareness of epilepsy as a condition.
Key elements All-staff training in epilepsy. Parental involvement. Parent confidence.
Jacob’s story Six-year-old Jacob has Dravet Syndrome and has the mental age of a two-and-ahalf to three-year-old. When he joined the reception class, mum Melissa met with the school nurse to discuss his epilepsy. Jacob’s parents were involved in the recruitment of a teaching assistant to reassure them that he would be receiving the highest level of support. A specific timetable has been created to meet Jacob’s needs while maintaining his inclusion in the classroom.
For the first time, Jacob is retaining information and progressing, largely due to the help of the school. The school promotes an environment of acceptance and Jacob’s class mates take it in turns to eat lunch with him in the classroom. The school also uses creative ideas to make sure Jacob doesn’t feel different from the other pupils. For example, Jacob has to wear a helmet to protect him in case of a seizure. During the Christmas nativity play, Jacob was dressed as a robin and he and the other robins all wore helmets made to look like robins’ heads.
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New Oscott Primary School Sutton Coldfield, West Midlands School profile Age group: 3-11 Number of pupils: 659 Primary school
Strategies implemented
Key elements
Jessica’s story
• All staff have regular training about epilepsy and are confident in dealing with seizures.
All-staff training.
Jessica is eight years-old and was diagnosed with epilepsy in January 2010. Since then she has received outstanding support from the school. The increasing levels of awareness ensured that Jessica was in a safe environment. Jessica had previously fallen two years behind at school due to her many absences. With the help of teachers at the school, an IEP and a school action plan, Jessica is progressing well.
• On enrolment the school nurse draws up an individual healthcare plan in conjunction with parents and pupils. A photo is displayed in the staff room so all staff are familiar with those pupils that have epilepsy. • An individual education plan is written for each pupil with epilepsy to ensure the right provision is sourced.
IHPs and IEPs
Training held on sessions are of eme the administra rgency t rescue ion
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Portchester School Bournmouth School profile Age group: 11-16 Number of pupils: 878 Secondary school for boys
Strategies implemented • Portchester School ensures that all staff have regular training on how to deal with and recognise signs of epilepsy. Pupils known to have epilepsy have their photographs displayed in staff-only areas of the school, along with instructions for what to do in an emergency. • Provision is made within the Personal, Social, Health and Economic education (PSHE) curriculum to raise awareness among pupils about epilepsy, the condition, warning signs and safety procedures. • Pupils with epilepsy are included in all school activities and trips after risk assessments to identify any precautions that might need to be taken.
• Pupils can complete a Certificate of Personal Effectiveness, which includes a module on first aid training. The British Red Cross trains pupils on dealing with emergency situations, which includes understanding medical conditions such as epilepsy.
Key elements All-staff training in epilepsy. Communication from school to home. Updating and communicating any changes in medication or behaviour.
Jamie’s story Jamie was nearly eight when he was diagnosed with epilepsy. Jamie is now 14 and his seizures are still uncontrolled. He has been at Portchester School for two years. Communication between home and school has been the key to ensuring the school are up-to-date with any seizures and changes to drugs. The school is aware of any side-effects of his medication and hospital visits so staff are able to help with his learning. Jamie is thriving at Portchester, which is down to the school’s commitment to supporting its pupils.
Awareness of epilepsy among pupils.
• There is good communication between home and school about any incidents or changes in medication.
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Pupils c a Cer tific n complete a a Effectiv te of Per sona e l a modu ness, which in c le on fi r st aid ludes training
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Sandringham Secondary School St Albans, Herts School profile Age group: 11-19 Number of pupils: 1203 Secondary and sixth form
Strategies implemented
Key elements
Luke’s story
• All staff attend a training day delivered by a school nurse on epilepsy.
All-staff training.
Luke is 13. He lives with severe complex epilepsy and associated learning difficulties. At school all pupils, particularly Luke’s form group, have been made fully aware of his epilepsy and have been a great practical support to Luke. Luke’s timetable has been arranged so that all his lessons are on the ground floor, to avoid busy corridors and stairs in case of a seizure. Luke’s support worker was also was trained about his Vagus Nerve Stimulation therapy (VNS) and how to activate it, ensuring that Luke would be safe in the case of an emergency.
• Individual education plans and individual healthcare plans are written and developed when pupils are enrolled at school. • Pupils receive a home-to-school diary which helps communication. All helpers and teachers write in daily and indicate any changes in behaviour or seizure activity. • The school has a very strong inclusive ethos. The school motto is “Everybody Can Be Somebody”.
Home-to-school diary to exchange any changes or differences. Strong inclusive ethos.
Pupils r e school ceive a home d commu iar y which he tolps nication 24
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The Lyndale School Eastham, Wirral School profile Age group: 2-11 Number of pupils: 32 Community special school
Strategies implemented
Key elements
XXXX’s story
• Each pupil has an IHP written when they start Lyndale. This is produced by the school nurse, parents and the epilepsy specialist nurse.
Using different forms of communication to ensure pupils are understood.
Jamie
• Regular epilepsy training for all staff members.
All-staff training. Communication between school staff, healthcare professionals and parents/ carers.
• Pupils unable to communicate have a ‘communication passport’ developed which gives information including understanding pupils’ facial gestures. The epilepsy nurse offers annual training in seizure management and the administration of emergency rescue medication.
P written IH n a s a h il p Each pu . This is le a d n y L t r a t when they s e school nur se y th produced b
• The school’s drivers and escorts receive training on managing seizures while travelling. • The consultant paediatric neurologist holds clinics at Lyndale for pupils with epilepsy and their parents. This means pupils have as little disruption to their education as possible. 26
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Wardour Catholic Primary School St Albans, Herts School profile Age group: 4-11 Number of pupils: 71 Primary school
Strategies implemented • A full time one-to-one support worker has been appointed, largely funded by the school. • All staff receive training on epilepsy from the local epilepsy specialist nurse. • Staff are trained in administering emergency rescue medication. • The school have Walkie Talkies so that staff can communicate if a pupil has a seizure and contact other members of staff if they need help.
Pupils r e school ceive a home d commu iar y which he tolps nication 28
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• A peer-to-peer buddy system has been introduced, where an older pupil looks out for a younger pupil.
• Pupils have attended an assembly about epilepsy to educate them about what epilepsy is and how they could help if someone had a seizure. • An individual file is held for each child. Staff make notes of the details of pupil’s seizures and put them in the file, which parents can then access.
Key elements All-staff training in epilepsy.
Emily’s story Five-year-old Emily has uncontrolled epilepsy and attention issues. Emily was allowed to repeat her reception year, as she was on an anti-epileptic drug that affected her ability to learn. She is now doing much better at school. The school has regularly lobbied the local council for funding and have already been successful in gaining two hours’ support every day for Emily’s physical disabilities.
Communication between home and school. Buddy system. Peer education.
• The school has a Z-bed for post-seizure recovery if the pupil does not need to go home. • An individual healthcare plan is written when a child enrols at Wardour, in conjunction with the school nurse and parents. 29
Resources and information
SEE OUTER DOCUMENT
Positive action in education
Epilepsy policy for school
Get in contact‌
(B102 - ÂŁ5.00 per copy)
(B111 - free)
This comprehensive resource is perfect for establishing a whole school approach to supporting pupils with epilepsy. It is suitable for teachers and support staff who want to increase their knowledge and understanding of epilepsy. It provides a guide to best practice for supporting pupils with epilepsy as well as teaching and learning strategies. Template forms such as individual healthcare plans (IHPs) are included. Positive action in education should be used in conjunction with Epilepsy policy for schools.
This document is ideal for lead staff with responsibility for devising an epilepsy policy for their school. It contains an example policy and four useful forms that can be photocopied: individual healthcare plan; staff training record; parental agreement to administer medicines and a questionnaire to identify potential difficulties facing students with epilepsy.
If you would like to be told when the next round of Edwards opens, to get involved with our campaigns or for further information email education@epilepsy.org.uk
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