epilepsy action

2 Routes to success 3

About epilepsyEpilepsy 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.

Epilepsy and educationOver 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.

Introduction

Epilepsy Action believes all

individuals with epilepsy

should be supported to reach

their full potential.

Over 456,000 people have

epilepsy in the UK, with aro

und

60,000 under 18.

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.

4 5

Epilepsy and education facts and stats

•��In�the�UK�epilepsy�affects�1�in�242�young�people under the age of 18.

•��The�majority�of�individuals�will�be�educated in mainstream schools.

•��Roughly�a�quarter�of�those�known�to�learning disability services have epilepsy.1

•��Half�of�children�with�epilepsy�are�estimated to be under-achieving academically in relation to their intellectual level.2

•��Even�in�children�whose�epilepsy�is�well-controlled, the effects of the powerful drugs they take can affect their educational attainment.3

The challenges

We believe there are three main challenges facing pupils with epilepsy in education.

•��Lack�of�understanding�of�epilepsy� as a condition.

•��Lack�of�training�on�emergency�procedures and medication.

•��Lack�of�understanding�of�the�implications�on academic achievement.

Epilepsy Action Edwards

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.

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.

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 dietThe�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-to-control 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.

Routes to success

1 Bell GS, Sander JW. The epidemiology of epilepsy: the size of the problem. Seizure 2001; 10(4):306-314

2 The Epilepsy Task Force, Burden of Epilepsy; a health economics perspective, Joint Epilepsy Council, 1999

3 Effects of anti-epileptic drugs on learning.

The Edwards is a national sc

heme

launched to recognise schools

that are going the extra m

ile in

supporting pupils with epilepsy.


Airedale High School Castleford, West Yorkshire

School profile

Age group: 11-16

Number of pupils: 993

Secondary school

Strategies implemented•��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.

•��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.

Key elementsAll-staff training.

Establishing parental confidence.

Total inclusion for pupils with epilepsy.

Amy’s storyAmy�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.

Training in how to administer

emergency medicatio

n has

been undertaken by a s

everal

members of staff

8 9

Barrowby Pre-School Lincolnshire

School profile

Age�group:�2-4


Pre-school

Strategies implemented•��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.

•��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.

Key elementsAnnual all-staff training.

Understanding and facilitation of the ketogenic diet.

Gabriel’s storyWhen�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.

Routes to success

All staff receive annual

epilepsy training, delivered

by the local nursing team.


Brimble Hill Nursery and Primary Swindon

School profile

Age�group:�2-11


Special school for children with severe learning difficulties and complex health needs

Strategies implemented•��School�staff�are�well�trained�in�dealing�

with seizures.

•��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.

•��Training�sessions�are�held�on�the�administration of emergency rescue medication, and sessions are arranged to communicate any updates that staff need to know.

Key elementsAll-staff training in epilepsy awareness and administering of emergency medication.

IHP�written�for�each�pupil.

Finlay’s storyNine-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.

Training se

ssions are

held on the administration

of emergency rescue

12 13

Chapelgreen Primary School Queenzieburn, Scotland

School profile

Age�group:�5-12


Primary school

Strategies implemented•��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.

•��All�telephones�in�the�school�have�a�script beside them to make sure staff get the right help in an emergency.

•��Good�communication�with�parents�through regular meetings providing updates.

•��After�risk�assessments�alterations�were�made to the school buildings, such as replacing metal coat hooks with plastic hooks.


Parental involvement.

Risk assessments.

Ruth’s storyRuth 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.

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.

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.

Good communication with parents through regular meetings providing updates.

Routes to success


Heather Avenue Infant School Norwich, Norfolk

School profile

Age group: 4-7


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

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 elementsAll-staff training for epilepsy awareness.

Educating the whole school and providing the opportunity for open discussion about epilepsy

Caitlin’s storyCaitlin�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.

Epilepsy-specific curriculum resources have been developed

to teach pupils about the causes

and effects of epilepsy.

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Kirktonholme Primary School East Kilbride, Scotland

School profile

Age�group:�5-12


Primary school

Strategies implemented•��All�teaching�and�support�staff�received�

an epilepsy awareness session, through Epilepsy�Connections’�Schools�Project.�

•��Pupils�are�educated�through�story�time�sessions to improve their understanding of epilepsy, seizures and what to do if someone has a seizure.

•��Staff�are�trained�in�the�administration�of�emergency rescue medication from the local paediatric epilepsy specialist nurse.

•��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.

Key elementsAll-staff epilepsy training.

Communication between parents and school.

Pupil education.

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.

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.

Calums’s story

Pupils are educated through story time sessions to improve their understanding of epilepsy.

17Routes to success

18 Routes to success

Lynsted and Norton Primary School Lynsted,�Kent

School profile

Age group: 4-11


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.

•��Fundraising�activities�have�been�incorporated into the school calendar to raise awareness of epilepsy as a condition.

Key elementsAll-staff training in epilepsy.

Parental involvement.

Parent confidence.

19

Six-year-old Jacob has Dravet Syndrome and has the mental age of a two-and-a-half�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.

Jacob’s story

Whole school assemblies are

held to educate the school

community about epilepsy

Routes to success 2120

New Oscott Primary School Sutton�Coldfield,�West�Midlands

School profile

Age group: 3-11


Primary school

Strategies implemented•��All�staff�have�regular�training�about�

epilepsy and are confident in dealing with seizures.

•��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

Jessica’s storyJessica 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.

Training sessions are held on the administration of emergency rescue

20

22 Routes to success

Portchester School Bournmouth

School profile

Age group: 11-16


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.

•��There�is�good�communication�between�home and school about any incidents or changes in medication.

•��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.


Communication from school to home.

Updating and communicating any changes in medication or behaviour.

Awareness of epilepsy among pupils.

Jamie’s storyJamie 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.

23

Pupils can complete a Certificate of Personal Effectiveness, which includes a module on first aid training

Routes to success 25

Sandringham Secondary School St�Albans,�Herts

School profile

Age group: 11-19

Number�of�pupils:�1203

Secondary and sixth form

Strategies implemented•��All�staff�attend�a�training�day�delivered�

by a school nurse on epilepsy.

•��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.

Luke’s�storyLuke�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.

Pupils receive a home-to-school diary which helps communication

24


The Lyndale School Eastham, Wirral

School profile

Age�group:�2-11

Number�of�pupils:�32

Community special school

Strategies implemented•��Each�pupil�has�an�IHP�written�when�they�start�Lyndale.�This�is�produced�by�the�school nurse, parents and the epilepsy specialist nurse.

•��Regular�epilepsy�training�for�all�staff�members.

•��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.

•��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.

Key elementsUsing different forms of communication to ensure pupils are understood.

All-staff training.

Communication between school staff, healthcare professionals and parents/carers.

XXXX’s storyJamie

Each�pupil�has�an�IHP�writ

ten�

when�they�start�Lyndale.�T

his�is�

produced by the school nurse


Wardour Catholic Primary School St�Albans,�Herts

School profile

Age group: 4-11


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.

•��A�peer-to-peer�buddy�system�has�been�introduced, where an older pupil looks out for a younger pupil.

•��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.

•��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.


Communication between home and school.

Buddy system.

Peer education.

Emily’s storyFive-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.

Pupils receive a home-to-school diary which helps communication


Positive action in education (B102�-�£5.00�per�copy)�

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.

Epilepsy policy for school (B111 - free) 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.

Get in contact…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 [email protected]

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