Epilepsy Action: Positive Action in Education

Positive action in education Contents

Foreword ...... 4

Some facts about epilepsy ...... 5

Seizures ...... 7

Types of seizure ...... 8

Possible triggers for seizures ...... 11

Diagnosis and treatment - some background information ...... 12

Supporting the pupil: the role of the school ...... 15

School organisational issues ...... 18

The role of school staff ...... 20

Educational implications of epilepsy ...... 21

The role of the teacher ...... 23

Teaching and learning strategies ...... 25

Activities ...... 28

Examinations and career options ...... 31

Emotional issues and developing self-esteem ...... 32

Creating effective home/school/health liaison ...... 34

Appendices ...... 35

Appendix 1: Issues for consideration Appendix 2: A whole school epilepsy policy Appendix 3: Staff INSET: Supporting pupils with epilepsy in mainstream schools Appendix 4: Record of seizures occurring during the school day Appendix 5: Individual Healthcare Plan for pupils with epilepsy Appendix 6: Materials to support personal, social and health education

Bibliography ...... 43

Useful contacts ...... 44

3 Foreword

This booklet is based on material produced by the Educational Service for Physical Disability (ESPD), the Special Educational Needs Support Service (SENSS) in Hull and a specialist paediatric epilepsy nurse. The information is for teachers and support staff for children of school age. It is intended to increase their knowledge and understanding of epilepsy and provide a guide to best practice for the support of pupils living with the condition. Between half and three quarters of pupils with epilepsy have seizures that can be controlled with medication. This booklet should help schools develop plans to support all pupils with epilepsy, but will be particularly useful for those pupils whose epilepsy is not under control. The booklet will also raise awareness of the possible educational implications of epilepsy and suggest strategies to overcome any difficulties. Introduction

Research shows that children and young people with epilepsy can be disadvantaged at school, partly because many teachers and educational professionals are unaware of the impact that epilepsy can have on a child’s education. Some children miss out on significant periods of learning, are excluded from physical activities and experience social exclusion because of their epilepsy. Ultimately this can lead to disappointing academic results, impaired social development, restricted career opportunities and reduced quality of life. Some Local Authorities (LAs), teachers and other professionals have developed knowledge and expertise in supporting pupils with epilepsy. This resource draws on that existing expertise to help LAs develop better services and support for pupils with epilepsy. The terms “school” and “pupil” are used for convenience throughout this guide, although the content is applicable to other types of educational establishments and learners, such as colleges of further education and their students. The term “parent” implies any person or body with parental responsibility, such as a foster parent, guardian or local authority.

4 Some facts about epilepsy

• Epilepsy affects about one in 279 children of school age in the UK. • Epilepsy is the most common serious neurological condition. • A single seizure does not normally indicate that a person has epilepsy (one in 20 individuals may experience a single seizure in their lifetime). • Epilepsy can affect anyone regardless of age, sex, ethnic origin or intelligence. • Every day about 75 people in the UK will be told that they have epilepsy. Definition

Epilepsy is a neurological condition. It can be described as “a tendency for the brain to experience recurrent seizures during which total or partial consciousness is lost.” Seizures can happen in any part of the brain. As the brain is responsible for all the functions of our mind and body, what any person experiences during a seizure will depend on where in the brain the seizure is happening. Over 40 different types of seizures have been identified and a person may have more than one type. Seizures can be classified into two main groups: • partial seizures – involving epileptic activity in part of the brain; and • generalised seizures – involving epileptic activity in most or all of the brain. There are many types of epilepsy, including some epilepsy syndromes. (A syndrome is a group of signs and symptoms occurring together in a specific pattern). The different epilepsy syndromes are identified using the following criteria: • the type or types of seizures experienced; • the age at which the seizures started; • the person’s development or learning abilities; and • the results of an electroencephalogram (EEG) examination. An EEG records patterns of electrical activity in the brain and is an important tool in the diagnosis of epilepsy.

5 6 Seizures

Seizures can be divided into two groups: generalised and partial (sometimes called ‘focal’). • In generalised seizures epileptic activity occurs across most or the whole of the brain and consciousness is lost. • In partial seizures epileptic activity is restricted to part of the brain (the ‘focus’) and consciousness may or may not be impaired. NB These seizure types can happen alongside one another, an episode may begin with a partial seizure which then becomes generalised across the whole of the brain (termed a ‘secondary generalised seizure’).

This illustration shows the lobes of the brain and some of the possible symptoms occurring during seizures

Frontal lobe (motor) Parietal lobe (sensory) Possible symptoms Possible symptoms • Uncontrolled jerking of one arm or leg • Tingling or warmth down one side of the body • Head and eyes turning to one side

Temporal lobe (memory, emotions etc) Possible symptoms • Feeling of intense fear or happiness Occipital lobe (visual) • Vivid memory flashbacks Possible symptoms • Intense deja vu • Flashing lights, balls of light or colours in • Intense smells or taste one half of vision • Unpleasant sensation in the stomach 7 Types of seizure Generalised seizures In a generalised seizure, the epileptic activity affects both sides of the brain. There is a loss of consciousness, although in some cases this is very brief. Absence seizures (previously known as ‘petit mal’) This is one of the most common forms of childhood epilepsy. The pupil may look blank and stare, with possible twitching or blinking and a brief switching off lasting for a few seconds only. They may look pale but are able to continue normal activity almost immediately after the seizure has finished. NB Absence seizures can easily be mistaken for ‘day dreaming’.

Action for absence seizures • Record the time of day and frequency (to see if a pattern emerges) and pass on to parents/doctor. • Reassure the pupil. • Note information that the pupil may have missed, and remind the pupil of the current task, if necessary.

Tonic-clonic seizures (previously known as ‘grand mal’) This is the classic seizure of which most people are aware. The pupil loses consciousness, becomes stiff (the ‘tonic’ phase) and falls to the ground (with possible injury). They may gasp as air is expelled from the lungs in the initial muscle spasm. Upper limbs tend to be flexed and the child may stop breathing for a short time and become blue around the mouth. The ‘clonic’ phase that follows consists of short, sharp jerks caused by the muscles tightening and relaxing in turn. The pupil may be incontinent.

Action for tonic-clonic seizures • Stay calm. • Protect the pupil from injury – remove sharp or hard objects nearby. • Place something soft under the pupil’s head, for example a cushion or coat. • Do not restrain or move the pupil unless they are in danger. • Do not put anything in their mouth or force anything between their teeth. • Aid breathing by gently placing them in the recovery position once the seizure has finished. • Stay with the pupil until you are certain the seizure is over. If the seizure lasts more than five minutes, call an ambulance or administer emergency treatment according to the individual healthcare plan. • Reassure and re-orientate the pupil. Tell the pupil that they have had a seizure and that they are safe. • Do not give them anything to eat or drink until they are fully recovered. • The pupil may need a period of rest/sleep at school or at home. Consider whether sending a pupil home is the only option, as they may be able to return to lessons within an hour or two. • Record that the seizure has happened and ensure parents have a copy of this record. This can aid diagnosis or influence treatment plans when the pupil visits the doctor.

8 Calling an ambulance Usually there is no need to call for medical assistance if a pupil’s seizure follows its usual pattern (where this is known). However, an ambulance should be called if: • you believe it is the pupil’s first seizure • a tonic-clonic seizure lasts for more than five minutes • one tonic-clonic seizure follows another without the pupil regaining consciousness between seizures • the pupil is injured during a seizure • the pupil may need urgent medical attention.

Atonic seizures (or drop attacks) With this seizure there is a sudden loss of muscle tone and the child falls to the ground. Children with this type of epilepsy often wear a protective helmet to reduce the risk of head injury. This type of seizure is more common in children with additional neurological problems.

Myoclonic seizures The term myoclonic comes from ‘myo’ meaning muscle and ‘clonic’ meaning jerk, Myoclonic seizures can affect the whole body, but are usually restricted to one or both arms and sometimes the head. As in absence seizures, the person is not conscious but the seizure is so brief that the person appears to remain fully conscious.

Action for atonic and myoclonic seizures • Talk quietly and reassure the pupil. • Record time of day and number of seizures. • Check for injury and treat if necessary. • Give careful consideration to safety issues for these pupils.

Partial seizures In a partial seizure, the epileptic activity affects just part of the brain. Simple partial seizures In a simple partial seizure, the child remains fully conscious epileptic activity occurs in just part of the brain. The symptoms depend on the area of the brain affected. The pupil may experience twitching, numbness, sweating, dizziness, nausea, disturbances to hearing, vision, smell or taste or a strong sense of deja vu. Symptoms are often not obvious to onlookers. These seizures can progress to other types of seizures and can therefore act as a warning or ‘aura’.

Action for simple partial seizures • Talk quietly and reassure the pupil if necessary. • Record time of day and number of seizures recognised.

9 Complex partial seizures The symptoms depend on the area of the brain affected. However, the pupil’s consciousness will be affected and they are unlikely to be able to respond to anything. Even though it may appear to onlookers that the pupil is fully aware of what they are doing, this is not the case. The pupil may carry out repetitive movements such as rubbing their hands, smacking their lips, chewing, swallowing repeatedly or plucking at or removing items of clothing.

Action for complex partial seizures • Do not try to stop or restrain the pupil. • Remove harmful objects and guide them from danger. • Talk quietly and reassure the pupil if necessary. • Record time of day and number of seizures.

Status epilepticus Status epilepticus is a term used to describe a seizure that lasts 30 minutes or longer, or a series of seizures without consciousness being regained in between. Status epilepticus can be convulsive (see tonic clonic seizures) or non-convulsive (see other seizure types such as absences and partial seizures). Convulsive status epilepticus is a medical and neurological emergency and urgent medical treatment is needed to stop the seizures. Some pupils have medicine prescribed for this emergency: more information is given on page16. Further information on status epilepticus can be obtained from Epilepsy Action.

10 Possible triggers for seizures

In many people with epilepsy, seizures happen without warning, but in some people certain triggers can be identified. Some examples are given below. Stress, anxiety or excitement can cause some people to experience more seizures. This could be during or after these periods have occurred. In school, factors might include: • worrying about their epilepsy and how it might affect their school life; • worrying about their exams; • excitement/worry about taking part in school activities or events; • stress caused if they are being bullied or teased.

There may also be factors outside school that cause stress (for example, a difficult home life, bereavement etc). Not taking medication as prescribed can lead to changes in a pupil’s epilepsy, such as the pattern or severity of their seizures. Illness can make seizures more likely. Unbalanced diets or skipping meals can lead to low blood sugar levels that, in some people, may be a seizure trigger. There is no evidence to suggest that specific foods can trigger seizures. Late nights , broken sleep, or irregular sleep patterns can trigger seizures. Establishing a regular sleep pattern may help. Hormonal changes can affect a pupil’s epilepsy. This could include the onset of puberty (in either sex) or seizures associated with menstruation (sometimes referred to as catamenial epilepsy). Alcohol and recreational drugs are increasingly part of many people’s lives. Alcohol can make seizures more likely and worsen the side-effects of anti-epileptic medication. Anti-epileptic medication can also exaggerate the effect of alcohol. Recreational drugs can trigger seizures in people whether or not they have epilepsy. In people with epilepsy they can affect seizure patterns, and are often associated with other possible trigger factors such as missed sleep or not eating properly. Photosensitive epilepsy is the name given to that form of epilepsy in which seizures are triggered by flashing or flickering lights. Photosensitive epilepsy has received a lot of publicity in recent years but is much less common than people realise. Only five per cent of people with epilepsy are affected. Certain frequencies of flash or flicker are known to trigger seizures in people with photosensitive epilepsy, generally between 16 and 25 flashes a second (Hz). Modern flat screen computer monitors, digital projectors and interactive whiteboards do not flicker. These devices should not trigger seizures unless the material being displayed on them contains flashing, flickering or high contrast geometric patterns. A pupil with epilepsy or their parents should be able to confirm whether their epilepsy is photosensitive. Further information on photosensitive epilepsy can be obtained from Epilepsy Action.

11 Diagnosis and treatment – some background information Diagnosis When epilepsy is suspected, it is vital that a correct diagnosis is made. Having a single seizure does not necessarily mean that someone has epilepsy. However, it is important that a first seizure is assessed by an epilepsy specialist. A firm diagnosis will usually be made by an epilepsy specialist following a thorough investigation of the individual case. Family, friends, and professionals who work with a child on a daily basis can have an important role in diagnosis by taking note of unusual episodes or behaviour. In order to confirm or rule out epilepsy after a seizure, the pupil will be asked many questions by their doctor. These may include the following. • How did you feel prior to the seizure, for example hot, cold, tired, hungry? • Did you experience any unusual symptoms beforehand, for example nausea, dizziness, chest pain? (This helps towards ruling out other medical conditions that could be confused with epilepsy such as heart problems, migraine, panic attacks or simple fainting.) • Did you have any warning signs before the seizure? If so, what were they? • Do you remember anything about the seizure? If not, what happened when you came round? • Did you fall and/or injure yourself? • Were there any symptoms after the attack, for example numbness or weakness?

Providing as much information about the seizure to the doctor is essential. And, as most people can’t recall what happens during a seizure, it is very useful if the doctor can speak to an eye witness. The doctor may ask the eye witness a number of questions including the following. • What was the pupil doing when the seizure started? • What exactly happened during the seizure? • How long did the seizure last? • Was there a period of confusion afterwards?

After the doctor has found out as much as they can about the seizure, they may wish to organise a number of tests that will help to fully confirm the diagnosis and/or determine the type of epilepsy a person has. The following are some of the commonly used tests. • Blood tests check overall health and look for other conditions that may be causing the seizures. • EEG (electroencephalogram) is a harmless investigation that records the electrical activity of the brain. • CT Scan (computerised tomography) is a type of X-ray that looks for any areas of damage to the brain that could account for the seizures. • MRI Scan (magnetic resonance imaging) provides a high quality image of the brain using radio waves and a magnetic field.

More detailed information about the tests for epilepsy is available from Epilepsy Action.

12 Treatment Anti-epileptic drugs (AEDs) The majority of children and adults have their epilepsy treated with AEDs and these can be very effective. AEDs do not cure epilepsy, but seek to control the excitability of the brain, preventing seizures from occurring. How they do this is not fully understood, but their effectiveness has been scientifically proven. Different AEDs work in different ways and some are more suitable for particular seizure types than others. The epilepsy specialist will try to prescribe the most effective drug for each individual. This may involve some trial and error, as some AEDs may not suit some people. When using AEDs to treat epilepsy, doctors prefer to use one drug only. This is known as monotherapy. Where this doesn’t work, polytherapy, that is the use of more than one drug, may be considered. Some AEDs can work well together, complementing each other in the way they work. It is very rare for three AEDs to work where two have not, and doctors will avoid prescribing more than two AEDs wherever possible. Like any other medication AEDs can cause side-effects. This will be taken into account when deciding the most suitable treatment for an individual. Most people experience few or relatively mild side-effects from AEDs. AEDs can also interact with each other and with other medications. For example one AED could lower the level of another AED in the blood and therefore lower its effectiveness. As another example, some AEDs can affect the contraceptive pill, reducing its effectiveness. Prescribing AEDs is a complex process and there are many different factors to consider. But once a successful treatment regime is established, most people’s seizures can be effectively controlled. Surgery Some people with epilepsy find that their seizures cannot be controlled by anti-epileptic medication. In some of these cases, epilepsy surgery may be considered. If the epilepsy specialist believes that surgery may be an option, a pre-surgical evaluation will be requested. This will look at a number of things such as whether the part of the brain causing the epilepsy can be operated on, the risks involved and the likelihood of success. For some, surgery may not be feasible because there is no obvious structural cause for the epilepsy in the brain (for example scar tissue following an infection or injury to the brain), the exact site of the seizures cannot be identified, or operating would simply be too dangerous for the patient. Vagus nerve stimulation (VNS) VNS is a type of surgery that does not involve operating on the brain. This operation involves attaching an electrode to the vagus nerve in the neck. The electrode is attached to a device that is implanted below the left collarbone. The electrode stimulates the vagus nerve, which carries messages to and from the brain and has connections to the parts of the brain responsible for seizures. As with other treatments for epilepsy, VNS is not always successful. However, it can improve seizure control dramatically in some people. Ketogenic diet The ketogenic diet is an alternative treatment for children with difficult to control epilepsy. The diet uses high fat and low carbohydrate levels to mimic the effect of starvation on the body. The diet must be carried out under close medical supervision. Further information about all types of treatment is available from Epilepsy Action.

13 14 Supporting the pupil: the role of the school

Put into context, approximately one in 279 of the UK school population has epilepsy which means that in a medium sized primary school (300 on roll) one or two pupils will be affected. In a medium sized secondary school (1,000 on roll) on average three to four pupils will have the condition. Every school should therefore be familiar with epilepsy and plan to meet the needs of pupils with the condition. The head teacher and the board of governors should bear in mind the legal framework when developing policies (See appendix 2), and should look to have policies in place to support pupils with epilepsy. Developing a whole school policy • As with any area of pupil welfare it is vital to have a whole school approach to meeting the needs of pupils with epilepsy. • Developing a whole school policy will help staff to feel comfortable with the educational and social implications of epilepsy and reassure parents of the school’s ability to meet their child’s needs. • A brief example of a whole school policy that can be modified by individual schools can be found in appendix 2. • Epilepsy Action publishes an Epilepsy Policy for Schools which contains a model policy, guidance for implementation and template forms. Copies of this booklet can be requested from Epilepsy Action. • It is often the responsibility of the Special Educational Needs Coordinator (SENCO) and other relevant staff to draw up the policy under the guidance of the head teacher. This should then be distributed to staff for comments before being ratified by the board of governors.

Raising awareness The head teacher or In Service Training (INSET) co-ordinator could arrange training to • raise awareness of the condition • help with seizure recognition and the ability to describe the main symptoms • demonstrate correct first aid for all seizures, especially generalised tonic-clonic seizures (see page 8) • recognise possible triggers • develop the individual seizure response plan for each pupil with epilepsy in school • raise awareness of the possible educational implications of the condition.

If the pupil has difficult to control epilepsy, an epilepsy specialist nurse may be able to give more advice or training to school staff. For more information contact Epilepsy Action. Routine anti-epileptic drugs (AEDs) Routine anti-epileptic drugs must be taken exactly as prescribed by a doctor. Most children take them twice a day, morning and night, so they will not usually need to be taken during school hours. However, if the daily dosage does need to be taken at school, the pupil concerned should administer it if possible. This should be supervised by a member of staff, to ensure that the right dose is taken at the right time. If the pupil is unable to manage their own medication, in consultation with parents a member of staff may be willing to administer it following a parental agreement. (A template for this can be found in Epilepsy Policy for Schools Form B which is available from Epilepsy Action).

15 Emergency medicines Some children have emergency medicine, for example rectal diazepam or buccal midazolam, prescribed in case they experience status epilepticus (please refer to page 6 for more information). If a pupil has this type of medicine prescribed, the school should have plans in place so that the medicine can be administered if the pupil experiences status epilepticus at school. The head teacher must ensure that written permission for the medicine to be given is obtained from the pupil’s parents. An individual healthcare plan must be in place, and should be drawn up by the prescribing doctor, in consultation with the pupil, their parents, and other professionals such as the school nurse if appropriate. See the individual healthcare plan template in appendix 5. Members of staff may volunteer to be trained in how to administer medicine, and should be prepared to give the drug in an emergency. Alternatively, these duties may be specified in the employment contract of a member of non-teaching staff. Training should be delivered by a medical professional such as an epilepsy specialist nurse, school nurse or community paediatrician. It is good practice for more than one member of staff to receive this training and responsibility, in case of staff changes or absence. The school nurse may be able to advise on where to source suitable training, or contact Epilepsy Action’s helpline. During epilepticus status • The pupil should not be moved during a seizure, unless they are in danger. • It may be necessary to ask other pupils to leave the classroom or the area where the seizure occurs. • If rectal diazepam needs to be administered, every effort should be made to preserve the dignity of the pupil. A witness of the same sex as the pupil should be present, wherever possible. • If the seizure continues, despite the emergency medicine being given according to the individual healthcare plan, an ambulance should be called.

Storage of medicines • All medicines should be stored in the container it was prescribed in, according to the manufacturer’s recommendations and in a secure area. • Medicines should be clearly marked with the pupil’s name, the required dosage and when the pupil needs to take them. • Medicines should be accessible only to authorised staff. • The removal of medicines from the secure store should always be recorded. The date, time, pupil’s name, dose and the signature of the removing staff should be noted. • Emergency medicine should be stored securely, and may need to be kept cold, but should be quickly accessible in an emergency.

Further information about the storage, handling and administration of medicines in education settings is available in the Department for Education and Skill s/ Department of Health guide Managing medicines in schools and early years settings . See bibliography for details.

Record keeping • An accurate record of the pupil’s medication and seizures is essential in assisting healthcare professionals to monitor the pupil’s condition. Record keeping can also chart the effectiveness of drug changes. • A communication system should be set up between the pupil, parents and the school to ensure good information gathering, for example using a home to school diary.

16 Information sharing • Consider how information will be shared with staff who work with the pupil. • Some schools use an ‘Alert Card’ system: a card with the pupil’s name, class and a current photograph, together with a photocopy of a personalised seizure response is placed in the school office/staff room/head’s office. You could use the individual healthcare plan (appendix 5) for this purpose. • Be aware of issues of confidentiality when sharing and displaying such information.

Writing an individual healthcare plan (IHP) An individual healthcare plan should include: • contact details of parents/carers and relevant healthcare professionals • type(s) of seizure experienced and symptoms • possible triggers • action in the event of a seizure • details of when and how emergency treatment should be carried out • names of staff members trained in emergency procedures • an outline of the routine for replenishment of stocks of necessary materials/medicines • instructions for the procedure to follow if designated staff are absent • parental consent for emergency procedures.

The individual healthcare plan should be written in conjunction with the pupil, parents, head teacher/class teacher and relevant healthcare professionals, for example the doctor prescribing emergency medicine. Each party should receive a copy of the plan. Parents are responsible for informing the school of any changes which will affect the individual healthcare plan, for example changes to medication or the nature of the pupil’s seizures.

‘Risk’ factors Risk assessments may need to be carried out in certain situations to ensure the safety of the pupil and staff. See page 28 for details of activities which may require risk assessments.

17 School organisational issues

An individual assessment should be made in all subjects and activities for children known to have epilepsy. Some possible considerations are listed below. Any changes must be based on an assessment of the individual child’s needs: blanket restrictions must be avoided. Staff All staff should be made aware of the school epilepsy or medical conditions policy. Those who work with groups of children should know which pupils have epilepsy and be aware of their individual needs. This information should be held on the pupil’s individual healthcare plan. It should include type of seizures, what action to take in the event of a seizure, medication and any side effects, and any educational impact of epilepsy, for example problems with memory or concentration. This information should be additional to any considerations under the SEN framework. When a pupil’s whose seizures are not well controlled joins the school, all staff should know what to do in the event of a seizure. If the pupil has been prescribed emergency medication, additional training will be required: see page 16 for details.

Safety issues in lessons Certain subjects, for example science, food technology and PE, have safety issues for all pupils. Some pupils with epilepsy may require additional safety measures. Some possible considerations are listed below. Science Use of protective equipment, for example aprons, safety spectacles, gloves etc should be properly enforced for all pupils, especially a pupil with epilepsy, to minimise the risk of injury if there is a possibility of a seizure. Effective use of safety equipment, for example test tube racks and clamps, or division of tasks between group members could be considered. Food technology Cooker guards can be fitted to cooker hobs, and microwave cooking techniques can be used in lessons if appropriate. Pupils, especially those with epilepsy, should not carry hot pans, and should be encouraged to use the back hotplates/burners. Physical education (PE) PE should be assessed on an individual basis according to the individual healthcare plan, in consultation with the child and their parents. Advice should be sought from the pupil’s epilepsy specialist regarding the safety of contact sports. It may not be advisable for the pupil to play contact sports if their epilepsy was originally the consequence of a head injury. With sensible precautions, most people with epilepsy can swim safely. Issues to consider are the pupil’s seizure type and frequency. It may be necessary to seek advice from the child’s doctor. For more information on adapting activities please see page 28. Technology Activities involving the use of hot or sharp objects, tools or machinery should be assessed on an individual basis. The assessment should take into account the pupil’s seizure type and frequency, and the specific activities involved.

18 Peer support Pupils should be encouraged to gain understanding of epilepsy in order to support fellow pupils with the condition. This could be done during a general health awareness or Personal, Social and Health Education (PSHE) session. Information suitable for pupils and sample lesson plans are available from Epilepsy Action’s website. Development of life skills Encourage the pupil to develop a whole life approach to their epilepsy, which may help to reduce the incidence and potential consequences of their seizures by recognising their own trigger factors. The following may also be useful. • Keep stress to a minimum - teach coping strategies, in partnership with parents. • Teach the pupil how to pace themselves. • Allow time for rest and play. • Encourage regular exercise and healthy eating. • Consider referral to other support services such as behaviour support or child and adolescent mental health services (CAMHS) if necessary. • Develop strategies to deal with teasing or bullying. • Encourage the pupil to take part in out of school hobbies/activities.

Support staff Support staff need to work with the class teacher to support the pupil according to the individual healthcare plan and any individual education plans.

19 The role of school staff

Pupils whose epilepsy is not well controlled will require some level of additional adult support to cover the following areas.

Appropriate seizure response All staff who work with pupils with epilepsy should be trained to respond appropriately when a seizure happens, in accordance with the pupil’s individual healthcare plan.

Safety issues • Adult support may be required in subjects where extra safety issues may be involved for pupils with epilepsy, such as science, technology, PE and other practical activities. • Teaching staff should decide how the support is provided, according to the school’s Special Educational Needs (SEN) framework and any individual healthcare or education plans.

Educational support • Additional learning, speech and language programmes, and measures to support behavioural issues, may be required. This may be done through the school’s SEN framework, under the supervision of the SEN coordinator (SENCO). • School staff may require input from external services, such as behaviour support or communication therapy. • Support staff can assist in delivery of programmes devised by teachers and/or the relevant support service. • The pupil and their parents should be involved in the provision, monitoring and review of any additional support.

Monitoring seizure control • Staff should monitor seizure control, especially during changes in medication and report to parents.

Developing personal skills • Staff can play a key part in promoting independence, confidence and self-esteem.

20 Educational implications of epilepsy

Epilepsy can affect a child’s education in several different ways. The condition can cause problems with memory, communication and learning. Anti-epileptic drugs (AEDs) can also have an impact on behaviour and learning. If the epilepsy is the result of an injury to the brain, there may be additional effects. The social and psychological effects of living with a long term condition can affect many aspects of social functioning, including self esteem and behaviour. Many pupils with epilepsy show significant changes over time in their educational achievement. It is important for school staff to be aware of this, in order to make the most of good days while accepting that progress may be slower at other times.

What might affect behaviour? • Many factors may affect behaviour, including the stress of having unpredictable seizures, low self esteem, or being conscious of feeling different to other pupils. • Sometimes medication can affect mood, making pupils depressed or hyperactive. This may be dose-related. • Pupils with partial or focal seizures may demonstrate strange or repetitive behaviours as symptoms of the seizure. It is important that teachers recognise this and do not confuse it with misbehaviour. (Seizures are usually stereotyped for each individual, so should be recognisable.) • Sometimes restrictions placed on young people, particularly adolescents, can lead to anger and frustration. It is important to allow the pupil to be part of the decision-making process and to provide opportunities within school to promote independence. • Seizures outside school time, for example during the night, may affect behaviour the following day. A home to school diary may be helpful to ensure school staff are aware.

Language and communication problems associated with epilepsy • If the areas of the brain concerned with language and communication are affected by epileptic activity, this will affect the pupil’s ability to communicate. Effects may vary from delayed or interrupted development of language skills to more specific problems, for example difficulties with word-finding and slow or slurred speech. Slurred speech may also be a sign of too high a dosage of anti-epileptic medication. • Some speech and language difficulties can be linked to a specific epilepsy syndrome called Landau-Kleffner syndrome. Detailed information relating to this can be obtained from Epilepsy Action. • Jumbled or confused speech can occur during or following some partial seizures.

How memory might be affected It is common for children and adults with epilepsy to experience some memory problems, and the reasons for this vary. For example, memory problems may be due to a person experiencing epileptic activity in the temporal lobes, the area of the brain responsible for memory. Someone who has damage to the part of the brain that registers and recalls information may also experience difficulties with memory. Memory problems may also be related to anti-epileptic drugs.

Short term memory Short term memory is used to carry out given tasks or sets of instructions in the classroom and to move from one step to the next, to ‘stay on task’.

21 Implications for teaching • Pupils with short term memory problems may have difficulty remembering instructions or tasks. Teachers can provide written instructions or a tick list of tasks for all pupils, or additional adult support to keep a pupil with epilepsy on task. • It is particularly important to make sure that pupils have a record of homework tasks.

Long term memory Our knowledge of the world is gradually built up by the continuous stream of information received by the brain through our senses. The more senses involved in the process the more likely an event will be remembered, that is by creating new links and associations. More complex skills, such as reading, are made up of many subsets of skills that are built up hierarchically. For these to be transferred effectively to the long term memory, repetition and over-learning are essential.

Implications for teaching • The multi-sensory approach (page 24) is effective in helping the pupil to form links and associations. • Any sensory impairment due to underlying brain damage may result in faulty information being received by the brain. • Epileptic activity in the brain may impair the development of long term memory. Therefore there may be gaps in learning, resulting in specific difficulties.

22 The role of the teacher Teachers can make school a positive experience by supporting pupils with epilepsy in a number of ways. • Be a positive role model for pupils by responding in a confident, calm and positive manner to pupils with epilepsy. • Give appropriate responses by developing a matter of fact approach to normalise the condition. • Avoid letting the pupil use their epilepsy as an excuse. • Help to develop the pupil’s confidence and encourage them to deal with new or difficult situations. • Accept that the pupil may feel angry and resentful about their epilepsy. • Recognise and record changes in behaviour, mood and performance, physical stamina, academic achievement and social interaction (this information may help the pupil’s consultant review their treatment). • Be aware of the pupil’s seizure type, the individual healthcare plan and where their medication is stored.

Teachers can also help in the classroom. • Ensure that key words and main points are included in classroom displays for each topic/module. • Ensure the pupil is always in clear view (not sitting with their back to the teacher) so that any seizure activity can be noted. • Help organisational skills by clearly labelling drawers etc. • Provide somewhere quiet for the pupil to sit with a friend, for example a reading area, if a pupil has had a seizure or if they feel unwell, always ensure that they are within an adult’s view. • Ensure that homework instructions are clear and sufficiently detailed for pupils and parents to understand. • Consider the effect of a pupil’s epilepsy on their ability to remember instructions and carry out extended or complex tasks, and make adjustments if necessary. • Be aware that epilepsy can lead to changes in attainment from day to day. • Differentiation of activities to allow for changes in ability over time may help pupils with epilepsy.

23 Teaching techniques The multi-sensory approach illustrated below is an effective and proven teaching style to use with pupils who have problems with learning and/or memory. Try to ensure that as many of these strategies as possible are included in each learning module.

Drama • Interviews working in pairs / small groups or Physical • Role play whole class Language • Experimentation • Simulation • Discussion • Demonstrations • Re-enactments • Modelling • Questionnaires • Rhymes/poetry • Rote learning Tactile The • Simple mnemonics • Artefacts Multi-sensory • Textures/textiles approach

Visual Auditory • Art work • Tapes • Pictures/illustrations

• Music • TV/videos • Drawings/diagrams • Living history • Multimedia • Maps (visitors giving presentations) • Computer programs • Graphs (use colour, arrows, underlining etc, to emphasise information)

Also: • Plan systematic revision of work covered. • Pre-teach new vocabulary (use word webs to link concepts). • Give opportunities for new work/skills to be used in different situations (to encourage transference of knowledge). • Always use age-appropriate written or spoken language and adjust to different ability level of pupil if necessary. • Provide multiple choice answers to questions to reduce reliance on memory. • The visual and auditory elements in each module could be sent home with pupils overnight or for the weekend to reinforce the subject or fill in missed areas.

24 Teaching and learning strategies Behaviour Individual behaviour strategies should conform to the school’s behaviour strategies and policies, while accepting that behaviour may be caused by a pupil’s epilepsy, for example strange or repetitive actions during a complex partial seizure. • Be firm, set clear boundaries for behaviour and state consequences of actions. • Give simple and concise instructions with visual clues if necessary. • Be consistent in expectations – if the pupil is a part of the group they should work within expected limits. • Ensure all staff are aware of strategies being used (reinforcement) and involve parents wherever possible. • Expect compliance – give instruction and say ‘thank you’. • If no progress is seen, consult parents and consider referring to an educational psychologist, or Local Authority (LA) behaviour support service.

Language and communication • Report any noted difficulties to the SEN Coordinator who may, in partnership with parents, consider referral to a speech and language therapist for an assessment. • If a speech and language therapy programme is already in place try to integrate as many aspects as possible into daily classroom interaction. • Always ensure that you have the pupil’s attention and that they make appropriate eye contact during conversation/discussion. • Check that the pupil has understood instructions through sensitive questioning. • For problems in the area of social communication try to structure situations in which the pupil can practise a specific skill. • When planning work give as many opportunities as possible for the pupil to use language meaningfully. • Provide differentiated work if appropriate.

Short term memory/poor concentration • Provide visual clues, for example photographs or objects or reference. • Make ‘cue’ cards – pictorial for younger pupils and presented either singly for each step, or as the full sequence. • Use sticky notes to develop organisational skills. • Put key words/ideas on the board. • Provide parents with vocabulary for the next teaching module so it can be practised before starting work. • Highlight important points in notes. • Make visual timetables.

25 Long term memory • Revisit work done on a regular basis. • Teach the pupil how to make effective notes: concise, numbered points with key words underlined or highlighted. • Help the pupil plan revision for tests and exams. • Produce ‘mind maps’ for each module to give the pupil an overview of the work covered.

Tiredness or lethargy • Ask the pupil or their parents if they have sleep seizures, and if so, use a home to school diary to keep school staff aware. • Note if the tiredness or lethargy occurs at a specific time of day. • Note problem and possible learning missed. • Keep record to pass on to parents.

Photosensitivity For the small percentage of children with photosensitive epilepsy, certain frequencies of flashing or flickering light may trigger seizures. Modern flat screen computer monitors, interactive whiteboards and digital projectors should not flicker. These devices should not trigger seizures unless the material displayed on them contains flashing, flickering or high contrast geometric patterns. Some precautions may be needed for conventional televisions: • Seat the pupil well away from the screen (more than 2.5 metres). • Ensure that the room is well lit. • Use a small screen where possible.

Specific learning difficulties with reading/writing • Specific learning difficulties should be assessed on an individual basis, using the school’s SEN framework. • Try to improve self-confidence since this increases motivation. • Use individual education plans to encourage the pupil and measure their progress against targets. • Make work achievable - set ‘small steps’ and praise success. • Find out what the pupil’s strengths are and try to make the most of these. • Be aware that pupils with epilepsy can display erratic progress. • Differentiate work over time as appropriate.

Physical disabilities and visual or hearing impairment • Refer to relevant support service for advice. • Consult with the pupil, parents and healthcare professionals for more guidance if appropriate.

26 Visual perception/handwriting • Use the multi-sensory method of teaching writing, involving tactile activities, hand/eye co-ordination, whole body movement, and language etc. • Teach cursive script from the beginning rather than print, so that the hand learns whole word patterns and develops a fluent style. • If no progress is made, refer to LA support services for an assessment via the SEN framework.

27 Activities

Pupils with epilepsy should participate in all activities along with other pupils, unless medical advice is to the contrary. Excluding an individual from an activity for a reason related to a disability may be unlawful under the Disability Discrimination Act (DDA). Schools must make reasonable adjustments to ensure that pupils with epilepsy can participate in activities. School visits All pupils included in out-of-school activities should be given adequate supervision. There may be extra considerations for pupils with epilepsy, and these should be considered when planning the activity so that any necessary adjustments can be made. Risk assessments must be carried out for all out-of-school activities and this process should consider additional needs such as supervision, access requirements and medicines. Risk assessments should also specify action to be taken in an emergency, including where help could be obtained. • The pupil’s individual healthcare plan and medication should be available during the activity. • If emergency treatment is likely to be needed, a person trained to give this should be a member of the party. This may mean additional members of staff need to receive training. • An emergency pack containing items such as a mobile phone and a light cover to maintain the pupil’s dignity during delivery of emergency medication, contact numbers and the address of the local hospital, may be appropriate.

Residential visits As above but also: • be aware that excitement, fatigue and irregular eating or sleeping patterns may trigger a seizure; and • medicines normally taken outside school hours may need to be administered.

Swimming Most children with epilepsy can swim safely, but some extra safety precautions may be needed. Adequate supervision is essential. Issues to consider are seizure type and frequency. Advice from the child’s doctor may be helpful. Safety precautions to take into consideration when a child has epilepsy during swimming. • Never allow a child with epilepsy to swim alone. • Ensure that adequate supervision is in place; one-to-one supervision may be necessary. A buddy system, where all swimmers supervise each other in pairs, avoids the pupil with epilepsy being singled out. • Make all lifeguards and supervisors aware of the pupil’s epilepsy. • Do not allow the pupil to swim if unwell. • Avoid overcrowded situations. • If practical, make sure the pupil swims where they can easily be helped out of the water. NB Swimming in the sea, lakes or very cold water is dangerous. Be sensible, and only allow swimming in controlled areas with lifeguards present.

28 How to deal with a seizure in the water Absence and partial seizures do not usually need emergency action, but care needs to be taken that the pupil’s mouth and nose remain above the water. Protect the pupil from danger and, when they recover, check if they need to get out of the water. They may not realise what has happened or they may feel groggy. Tonic-clonic seizures Basic guidelines • From behind, hold the pupil’s head above water. • If possible, move the pupil to shallow water, holding their head above water. • Do not restrict movement or place anything in their mouth. • Once abnormal movement has stopped, move the pupil to dry land. • Place the pupil on their side to recover if necessary. • Stay with the pupil until they feel better.

Call an ambulance if: • you believe the pupil has swallowed or inhaled water • the pupil goes from one seizure to another without gaining consciousness • the seizure lasts longer than is usual, or for more than five minutes if you are unsure • the pupil has been injured.

Water sports This covers a wide variety of activities and guidance varies with the particular sport. Consult the Association for Physical Education for extra guidance (see Useful Contacts).

Discos and theatre visits • Check the pupil’s individual healthcare plan to see if they have photosensitive epilepsy. • People with photosensitive epilepsy may have seizures triggered by strobe or flashing lights, as in a disco, some theatre shows or in some films. • Before going to see a film or visiting the theatre, enquire about the use of flashing light effects.

Climbing and hiking Heights can be a danger to people with epilepsy, and climbing may be dangerous to a pupil whose seizures are not controlled. Schools should consider the risks and possible benefits, and seek advice from the pupil’s parents and doctor if necessary. Hiking and rambling are usually safe for people with epilepsy, as long as they are accompanied by someone who knows what to do in the event of a seizure. For all the above, more guidance is available from the DfES, in the guide Health and Safety of Pupils on Educational Visits, (available at: www.teachernet.gov.uk/wholeschool/healthandsafety/visits).

29 Examinations and career options Examinations • Be aware that seizures may be triggered by fatigue or stress, either before or during examinations. • Inform the relevant boards well in advance of any pupil with epilepsy who may be sitting exams. • If a pupil has a seizure just prior to, or during, an exam, inform the board immediately. • Absence seizures are more difficult to spot; if possible sit the pupil close to a familiar member of staff, acting as invigilator, who is more likely to recognise absences. • The following may be appropriate in some cases. i) Rest periods can be arranged. ii) In subjects where safety would be an issue, for example food technology, science, etc, pupils could be entitled to adult support. • Additional options such as 25 per cent extra time; a reader or a scribe can be considered. The national bureau for students with disabilities (Skill) can advise further (see appendix 6 for contact details).

Career options for pupils with epilepsy • Epilepsy is covered by the Disability Discrimination Act (DDA) meaning that blanket bans cannot be made (with the exception of the armed forces). • For those whose seizures are not well controlled, the range of career options will depend on aptitude, ability and interests and the requirements of the chosen career. • Entry to all other careers/professions should be assessed on an individual basis.

Specific advice • Teachers would need to be familiar with the pupil’s academic abilities, social skills, interests and type and frequency of seizures. • Specialist advice is available from Connexions, the UK Employment Service, or the national bureau for students with disabilities (Skill). The latest information regarding employment is available from Epilepsy Action.

30 31 Emotional issues and developing self-esteem

Some children with epilepsy do not have the same social skills and social maturity as other pupils. There can be a number of psychological and social reasons for this, such as the attitudes of family and other people, as well as self image. These quotes illustrate the feelings expressed by some pupils.

t invited “I never ge “My parties” mum doesn’t let me to do a nything in case I have a fit”

s “My family and friend ish other understand – I just w “I don’t like h derstand” aving fits ‘cos I’m the people would un only one who ’s got it at my house and school”

They may also experience: • bullying or teasing • frustration caused by the restrictions their epilepsy may bring • fear of what is happening to them during the seizure or what other pupils may think or feel • fear of injury during a seizure • anxiety related to seizures happening in a public place.

32 Strategies to support the pupil Developing the pupil’s confidence to the full gives them a greater ability to assert themselves. Try the following strategies. • Ensure that the pupil and parents understand epilepsy and it’s possible impacts on education. Information and advice is available from Epilepsy Action. • Acknowledge that it is reasonable for the pupil to have feelings of resentment and anger, for example, and that it is acceptable for them to express these feelings in an appropriate manner. • If required, plan regular sessions for the pupil to discuss social and educational issues with a member of staff, or consider referral to other services such as CAMHS. • Involve pupils from an early age in decision-making regarding their epilepsy and education. • In primary schools, develop structured activities at playtime to include isolated pupils (involve lunchtime supervisory assistants) for example ring games, ball games, skipping games. • In secondary schools, use Personal, Social and Health Education (PSHE) to educate other pupils about epilepsy with both the pupil’s and parents’ permission (see appendix 7 for some ideas). • Allow the pupil to be as independent as possible. • Encourage participation in clubs, including outside school hours. • Give the pupil the opportunity to participate in the same activities in and out of school as other pupils (consult the pupil, parents and other professionals to ensure that effective adjustments are made if necessary). • Ensure that bullying and teasing are not tolerated.

Developing self-esteem Pupils with epilepsy may have low self-esteem linked to achievement in school, or emotional issues related to their condition. The following strategies may help to build confidence. • Ensure all staff are aware of the pupil’s condition, their individual healthcare plan, any individual education plans, and the implications of these. • Have a positive attitude to the pupil’s epilepsy. • Encourage the pupil to be open and share information about their epilepsy with their friends, to enable them to offer support. • Make sure goals are attainable. • Always convey to the group that every pupil is a valued member of the class. • Build on the pupil’s strengths. • Reward success, academic or otherwise, with real congratulations and praise. • Include the pupil’s work in displays, along with that of other pupils. • Celebrate the pupil’s successes with their parents. • Give all pupils the same curriculum opportunities, bearing in mind particular strategies noted in the individual healthcare/education plan. • Share knowledge of the pupil as they make any transition, for example at the end of each academic year, describing strategies which have supported the pupil effectively.

33 Creating effective home/school/ health liaison

For pupils with epilepsy to be fully supported in the mainstream environment, there must be effective communication between the home, relevant health professionals, and the school. To create and maintain this relationship consider the following. • The SENCO should gain as full a picture as possible about the pupil’s epilepsy, through discussions with the pupil and their parents. • Create an individual healthcare plan (see appendix 5) for the pupil - involving parents, health professionals, school staff, and the pupil (if appropriate). • Information from the above should be disseminated to all school staff, but ensure permission is given by the parents/pupil. • Maintain a dialogue with parents, either verbally or through a home/school book. This should ensure school staff are aware of changes at home which may have implications in school, for example if a pupil has had early morning or sleep seizures. • School staff should, in turn, report any significant changes or occurrences which take place during the school day. • School staff should be informed of any changes in medication and the possible implications of this. • Joint meetings may need to be arranged between health, school staff and parents to ensure effective management of the pupil’s condition in school. • Parents should be aware of the school’s SEN framework and its implications for them. Explain the three stages of action, action plus and statement of SEN, and make sure they know which stage their child is at. • Invite parents and pupils to individual education plan planning meetings and reviews. • Involve parents in annual SEN and healthcare reviews, providing reports to parents in advance of meetings. • Parents should know who to contact if they have concerns about their child. • Parental concerns should be listened to, acknowledged, and acted upon. • Encourage parents to become involved in the life of the school. • Inform parents of visits from other professionals, for example educational psychologist.

34 All appendices may be photocopied

35 Appendix 1: Issues for consideration

1. Is the governing body aware of the educational implications of the needs of a pupil with epilepsy, and its regulatory responsibilities in ensuring that those needs are met? 2. Are all staff aware of the potential educational implications of epilepsy? 3. Is there any additional adult support for the pupil? 4. Are all staff appropriately trained? 5. What are the methods of ensuring effective communication between home and school? 6. What other agencies are involved in meeting the needs of the pupil? 7. Do you know where to seek further information and advice? 8. Are you aware of recent legislation, local, regional and national policies and guidance? 9. What strategies are there to support a pupil’s emotional wellbeing? 10. Are the staff aware of the pupil’s anti-epileptic medication and its side effects? 11. What strategies are there to promote positive pupil group relationships? 12. How do you promote positive images of the pupil? 13. Are appropriate teaching strategies in place? 14. Are any additional resources/strategies required to support curriculum delivery?

Epilepsy Action New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY tel. 0113 210 8800 fax 0113 391 0300 Helpline freephone 0808 800 5050 [email protected] www.epilepsy.org.uk

This appendix outlines a brief example of a whole school epilepsy policy. Epilepsy Policy for Schools booklet is available from Epilepsy Action. Recognising the individual needs of the pupil with epilepsy This school will encourage and assist pupils with epilepsy to participate fully in the curriculum and all aspects of school life. This school recognises and understands epilepsy as a varied condition affecting about one in 279 school children. This school has a clear understanding of what to do and what not to do in the event of an epileptic seizure. This school will ensure that all staff and pupils understand epilepsy to help alleviate the stigma and fear which are associated with the condition. This school encourages disclosure of having epilepsy as a recognised medical condition within the school’s admission procedure.

All school personnel need to be aware of the needs of individual pupils with epilepsy. This will include • the type and frequency of seizures • any known triggers • routine first aid procedures when seizures occur • medication and possible sid-effects • what to do in an emergency, for example how to give emergency medicine • any additional resources required to support the pupil with epilepsy.

Epilepsy Action New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY tel. 0113 210 8800 fax 0113 391 0300 Helpline freephone 0808 800 5050 [email protected] www.epilepsy.org.uk

Epilepsy Action is a working name of British Epilepsy Association A Company Limited by Guarantee (Registered in England No. 797997) Registered charity in England (No. 234343) Appendix 3: Staff INSET Supporting pupils with epilepsy in mainstream schools Aims To raise awareness of epilepsy To plan to meet the needs of pupils with epilepsy To encourage an interdisciplinary approach to supporting pupils To allay fears and misunderstandings about epilepsy To put recommendations into context for this school

1. Raising awareness of epilepsy • What is epilepsy? • Types of epilepsy • Treatment of epilepsy • How to deal with a generalised tonic-clonic seizure • How to recognise and deal with other seizure types

2. Planning to meet the needs of pupils with epilepsy • Whole school policy • Nominating staff to administer drugs and receiving training • Identifying area for storing/administering drugs • Record keeping • Information sharing • Individual education plan - educational implications, side-effects of drugs, etc

3. Encouraging an interdisciplinary approach to supporting pupils with epilepsy • Home/school/health liaison

4. Reducing fears and misunderstandings about epilepsy • What to do when seizures occur - refer to individual healthcare plan • Recognising an emergency - refer to individual healthcare plan/school policy • Triggers, activities to avoid etc

5. Putting recommendations into context for this school • Accurate record and description of pupil’s seizures in school/at home • Importance of forward planning for subjects, physical activities, visits (day and residential) etc

Epilepsy Action New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY tel. 0113 210 8800 fax 0113 391 0300 Helpline freephone 0808 800 5050 [email protected] www.epilepsy.org.uk

Name: ...... Date of Birth: ...... Address: ...... Telephone: ...... Emergency contact numbers ......

Date of seizure ...... Time it occurred ...... How long did the seizure last? ...... Action taken (if any) ...... Were there any warning signs (for example mood changes, restlessness, sensation, taste, sound)? The pupil may assist in answering this question ...... What was s/he doing when s/he had the seizure? ...... Did s/he fall? If so describe ...... Did s/he lose consciousness? ...... What colour was his/her face? ...... Did his/her body move during the seizure? ...... If so please describe ...... Bladder Bowel Was there incontinence? What was s/he like after the seizure? Immediately recovered Sleepy Confused Agitated

Other ...... Was s/he injured during the seizure? If so, how? ...... Was first aid required? ...... Name ...... Post held in school ...... Date ...... Appendix 5: Individual Healthcare Plan for pupils with epilepsy

Name of pupil: ...... Date of birth: ...... Name and contact details of parent(s): ......

Date form completed: ...... Date for review: ...... Copies held by: ...... Name and contact details of GP: ...... Epilepsy specialist/consultant: ...... Epilepsy/paediatric/community nurse: ......

Seizure types and full description of symptoms: ...... How long does a seizure usually last:? ...... First aid in a seizure: ...... Action to take afterwards: ...... Possible triggers: ...... Warnings/aura (if any): ......

Prescribed routine AEDs: ...... Side-effects experienced: ...... Dose and time if taken at school: ...... Member of staff responsible for administering/supervising routine AEDs: ...... What constitutes an emergency? (Length of time/number of seizures) ......

Action to take in this emergency: Call an ambulance Call parents Administer emergency medication (see next page):

Any learning difficulties or disabilities: ...... Activities that should be avoided on medical advice: ...... Safety precautions for specific activities: ...... Other medical conditions: ...... Member of staff responsible for home-school liaison: ...... Individual education plans are kept (location): ...... Seizure record forms are kept (location): ...... Name of emergency medicine: rectal diazepam/buccal midazolam (delete as appropriate) Member(s) of staff trained to administer: ...... Member(s) of staff to act as witness: ...... Head teacher/employer signature to confirm that insurance cover is in place for staff: ...... When should emergency medicine NOT be given? ...... Initial dose: ...... How to administer: ...... Usual reaction: ...... Any difficulties which may arise and action to take: ......

Action to take if seizure continues for ... minutes:

second dose call ambulance

Second dose: ...... If seizure continues for ... minutes: call ambulance Member of staff to accompany pupil to hospital: ...... Who should be informed if emergency medicine is administered: Parents. Phone number: ...... Prescribing doctor. Phone number: ...... Other. Name and Phone number: ......

Plan agreed by: (signatures) ...... Parents: ......

I hereby give consent for my child (named above) to be given rectal diazepam/buccal midazolam by trained staff (named above), in the circumstances described in this document. I will inform the school of any changes to his/her seizures or medication.

Prescribing doctor ......

Member(s) of staff trained to administer ......

Head teacher/employer ......

Epilepsy Action New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY tel. 0113 210 8800 fax 0113 391 0300 Helpline freephone 0808 800 5050 [email protected] www.epilepsy.org.uk

Primary phase Projects: What can you discover about the history of epilepsy? Many famous people have had epilepsy; can you find out more about them? Who are they and what are they famous for?

Secondary phase Discussion points: ‘Most people, including employers, tend to react to epilepsy with an uncertainty about how far someone with epilepsy can lead a normal working life’ Based on your findings do you think their fears are justified? ‘There are many famous people with epilepsy and the condition did not stop them from succeeding’ Do you think that knowing this would help a young person with epilepsy? ‘To a great extent, the social problems of people with epilepsy are created by the attitude of society towards them’ Discuss... ‘People with epilepsy themselves can be very influential in shaping the attitudes of those around them’ What information can those with epilepsy give that would influence people and how do you think they can pass this knowledge on to the general public?

Epilepsy Action New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY tel. 0113 210 8800 fax 0113 391 0300 Helpline freephone 0808 800 5050 [email protected] www.epilepsy.org.uk

Epilepsy Action is a working name of British Epilepsy Association A Company Limited by Guarantee (Registered in England No. 797997) Registered charity in England (No. 234343) Bibliography Epilepsy Action Materials and website at www.epilepsy.org.uk Understanding Epilepsy Dr M Walker & Professor S Shorvon BMA (Family Doctor Series), 1996 Epilepsy Education in Schools Helen Coleman & Alison Fielder Paediatric Nursing Volume 11 No 9 November, 1999 ‘Epilepsy & Education - A Medical Symposium on Changing Attitudes to Epilepsy in Education’ Various contributors (in particular Gregory Stores, Ronald Radley & Chrissie Verduyn) Education in Practice, Manchester, 1987 The National Society for Epilepsy Handouts & website at www.epilepsynse.org.uk The Educational Implications of Disability - A guide for teachers Judith Male & Claudia Thompson RADAR (The Royal Association for Disability and Rehabilitation) London, 1988 Common Sense Methods for Children with Special Needs Peter Westwood Routledge, 1997 The Brain Dr Martin Woods BBC Publications,1969 Managing medicines in schools and early years settings Department for Education and Skills, Department of Health. Crown copyright, 2005. Available from DfES publications, 0845 60 222 60. Epilepsy (part of the SEN series) Gill Parkinson and Mike Johnson Continuum, 2006. Disclaimer: Epilepsy Action makes every effort to ensure the accuracy of information in its publications but cannot be held liable for any actions taken based on this information. Epilepsy Action holds the copyright for this document. This publication or any part of it may not be reproduced in any way, or stored electronically, without the prior written permission of Epilepsy Action. The appendices can be reproduced, but Epilepsy Action retains copyright. Epilepsy Action acknowledges the valuable contribution of Kingston Upon Hull City Council to the information provided within this publication. Useful contacts

Association for Physical Educational Service for National Centre for Young Education Physical Disability (ESPD) People with Epilepsy Building 25 Frederick Holmes School (NCYPE) London Road Inglemire Lane St Piers Lane Reading Hull Lingfield RG1 5AQ HU6 8JJ Surrey Tel. 0118 378 6240 Tel. 01482 854 855 RH7 6PW Fax. 0118 378 6242 Email: Tel. 01342 832 243 www.afpe.org.uk [email protected] www.ncype.org.uk www.espd-hull.co.uk Contact a family: for families Physically Handicapped and with disabled children FABB Scotland (formally Able Bodied 209 - 211 City Road known as PHAB Scotland) (PHAB) London Norton Park Summit House EC1V 1JN 57 Albion Road 50 Wandle Road Helpline 0808 808 3555 Edinburgh Croydon www.cafamily.org.uk EH7 5QY CR0 1DF Tel. 0131 475 2313 Tel. 020 8667 9443 David Lewis Centre Email [email protected] Email [email protected] Mill Lane,Warford www.fabb.org.uk www.phab.org.uk Alderley Edge Cheshire Institute for Sport and Skill - National Bureau for SK9 7UD Recreation Management Pupils with Tel. 01565 640 000 (ISRM) Disabilities www.davidlewis.org.uk Sir John Beckwith Centre for Head Office Sport Chapter House Department for Children, Loughborough University 18-20 Crucifix Lane Schools and Families (DCSF Loughborough London formally the DfES) Leicestershire SE1 3JW Sanctuary Buildings LE11 3TU Tel. 020 7450 0620 Great Smith Street Tel. 01509 226 474 Helpline 0800 328 5050 London Email [email protected] Email [email protected] SW1P 3BT www.isrm.co.uk www.skill.org.uk Tel. 0870 000 2288 www.dcsf.gov.uk National Society for Epilepsy (NSE) Epilepsy Action Chesham Lane New Anstey House Chalfont St Peter Gate Way Drive Buckinghamshire Yeadon SL9 0RJ Leeds Tel. 01494 601 300 LS19 7XY Helpline 01494 601400 Epilepsy Helpline 0808 800 5050 www.epilepsynse.org.uk Email [email protected] www.epilepsy.org.uk

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Epilepsy Action, New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY tel. 0113 210 8800 fax 0113 391 0300 email: [email protected] www.epilepsy.org.uk Epilepsy Action is a working name of British Epilepsy Association B102.01 A company Limited by Guarantee (Registered in England No. 797997) Registered as a Charity (No. 234343) 05/09