EPILEPSY

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FEBRUARY 15, 2007 THE WORLD’S MOST COMMON SERIOUS NEUROLOGICAL DISORDER

AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES2

CONTENTS

Epilepsy – an individual condition p. 4

Finally seizure free p. 5

Diagnosis p. 6

Epilepsy in children and young people p. 7

Epilepsy in women p. 8

Living with epilepsy p. 9

Brain imaging & epilepsy p.10

Genetics research p.12

A global perspective p.13

SUDEP p.13

Therapies & treatment options p.14

Helen Hollis – liberated by surgery p.15

Vagus nerve stimulation p.16

Coping with memory loss p.16

Government initiatives p.17

Economic burden p.17

Who looks after your epilepsy? p.18

Resources & helplines p.19

EPILEPSY – A TITLE FROM MEDIAPLANET

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Epilepsy is the most common serious disorder that affects the brain. Oneperson in 20 will have an epileptic seizure sometime in their life and 50per 100,000 people develop epilepsy every year. In the UK, this translatesto 450,000 having epilepsy at the present and 30,000 developing it everyyear. Whilst two thirds of those who develop epilepsy have the conditioncontrolled with medication, the remainder do not do so well and continueto have seizures.

Our ability to understand the causes of epilepsy has come a long wayin the last decade as result of sophisticated imaging with magnetic reso-nance imaging (MRI), that visualises not only the structure of the brainin exquisite detail, but also the function of the brain: both normal func-tions such as language and memory, and abnormal activity that givesrise to epileptic seizures. These data are vital for planning potentiallycurative surgical treatment for those in whom medications are not suc-cessful at controlling their epilepsy.

With the mapping of the human genetic code, much current effort isgoing into understanding how variations in the genetic make-up ofindividual people causes them to be at high or low risk of developingdifferent types of epileptic seizures. Of even more importance is theunderstanding of how individual genetic make-up determines whetherparticular medications are likely to be effective or not, and whether they

are likely to have adverse effects or not. The combination of sophisticat-ed brain imaging and genetic analysis, with the traditional tools of adetailed clinical history, video recording of seizures and study of thebrain’s electrical rhythms with the electroencephalogram (EEG) are nowallowing us to individualise therapy for each person so they have thebest possible chance of control of their epilepsy without side-effectsfrom treatment.

Epilepsy remains a condition that is serious, common and misunder-stood by many. With the advances in understanding and treatment thatare being made, however, the future has never been brighter for thosewho develop epilepsy. A wider understanding of epilepsy by the publicat large is also needed to eliminate the stigma that many still feel andthis report will go a long way towards achieving that goal.

Professor John DuncanHead of the Dept of Clinical and Experimental EpilepsyInstitute of Neurology UCLAlso Medical Director of the National Society for Epilepsy

Welcome to Epilepsy

NSE – excellence in epilepsy servicesThe National Society for Epilepsy(NSE) is the UK’s largest epilepsycharity, offering the broadest rangeof services of any charity workingin this field. Services include resi-dential, respite and domiciliarycare; medical services includingoutpatient clinics and inpatientassessment, diagnosis and treat-ment; information, support andtraining services, including a confi-dential epilepsy helpline.

Working in collaboration withthe National Hospital for Neurologyand Neurosurgery, part of Universi-ty College London Hospitals Trust,NSE’s consultants run the largestepilepsy outpatient clinics in thecountry seeing more than 3,000

patients every year. The Sir WilliamGowers Centre, also at Chalfont StPeter, admits around 400 in-patients every year for a detailedassessment of their diagnosis andtreatment. Patients are referredthrough the NHS.

NSE’s research is renownedthroughout the world. Much of theresearch centres on the quest todevelop new and improved methodsof imaging the brain using magnet-ic resonance imaging techniques.The charity runs a powerful 3-TeslaMRI scanner, housed at it’s Chalfontheadquarters, which is used for bothclinical and research scans. Visitingresearchers come to NSE’s ChalfontCentre from all over the globe to

share in the research programmes.NSE is also becoming increasinglyinvolved in research into the genet-ics of epilepsy, unravelling the DNAcode to discover the causes andimplications of epilepsy with a goalof developing personalised treat-ments for each individual with thecondition.

The charity has been providingtreatment and care for people withepilepsy for more than 110 years. Itwas founded to offer a safe homeand employment to people livingwith epilepsy in late Victorian Eng-land, who more often than not werebeing confined to asylums in themistaken belief that their seizureswere a sign of lunacy or possession

by evil spirits.Today, the Society’s residential

and respite care options cater foradults who are most severely affect-ed by their epilepsy, most havinglearning disabilities and some alsohaving physical disabilities. Carepackages are funded by the refer-ring local authorities. Care homesare primarily located at Chalfont StPeter in south Buckinghamshire,but the charity is now seeking todevelop more care services in thecommunity to ensure clients and allinvolved can have a choice of careoptions. This includes an increasingemphasis on domiciliary care andsupported housing.

Information and training services

are extensive. Training is deliveredto lay and professional audiences.Information includes a comprehen-sive range of information leafletscovering almost every possibletopic, from diagnosis to medication,seizures types to surgery, livingwith epilepsy, coping with memoryloss, complementary therapies,pregnancy and parenting, educa-tion, employment. Specific infor-mation packages are available forpeople with learning disabilities.Information resources also includevideos and DVDs.The epilepsy helpline is a caller-led,confidential helpline. It is open eachweekday from 10am to 4pm.01494-601 400

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An individualcondition

EmergencycareMost people’s seizures follow anindividual pattern in how long theylast and usually stop by themselves.However, sometimes seizures do notstop by themselves or one seizurehappens after another without theperson recovering in between. Thisis called status epilepticus and is amedical emergency requiringurgent care and treatment. Atdiagnosis and review all peoplewith epilepsy should be giveninformation about what to do andwho to contact in an emergencysituation. This should also be cov-ered in a care plan.

Healthy tips● Take anti-epileptic medication

regularly and at the required times.

● Check with your doctor or pharmacist before using any other medication as some treatments may interact with anti-epileptic medication and may cause seizures to occur.

● Take simple safety precautions to reduce risk of injury during a seizure.

● Identify trigger factors such as tiredness, stress or heavy drinking that may bring on a seizure and avoid them.

● Keep fit and relax – many enjoyable activities help to lower stress and improve seizure control.

Photo sensitiveepilepsyEpileptic seizures can sometimes betriggered by flashing or flickeringlights or by some geometric shapesor patterns. Contrary to popularbelief, photosensitive epilepsy israre and only affects between threeand five per cent of people withepilepsy. It is more common inchildren and young people.

Common triggers for people withphotosensitive epilepsy include:

● Watching television, playing computer games or looking at other computer graphics

● Watching a faulty television or other light source that flickers slowly

● Strobe lights

Tips which might help people withphotosensitive epilepsy includewatching television or using a com-puter in a well lit room, using an LCDscreen which is flicker free and cov-ering one eye if suddenly exposed toa flashing or flickering light.

Epilepsy is one of the oldest medical conditions knownto man. Aristotle, Socrates and, later, Julius Caesar, wereamong the earliest great people who are said to have hadepilepsy. Through the ages the condition has been muchmisunderstood.

In the middle ages theories aboundedthat epilepsy is caused by evil spirits,and in the Victorian era people withepilepsy were often condemned toasylums in the mistaken belief thatepilepsy is a mental condition.

But epilepsy is a physical conditionthat can affect anyone, of any age,background and race. It may becaused by anything that affects thebrain, including a genetic defect, amalformation in the development ofthe brain, or may be the result ofphysical trauma or an illness such asstroke, meningitis or a tumour. Insome people there will be no evidentcause.

People with epilepsy will haveseizures that arise when there is anabnormal electrical discharge of thenerve cells in the brain. Whilst manypeople will have a single seizure atsome time in their life, a person withepilepsy will have recurrent seizures.

Epileptic seizures can take manyforms. Long gone are the days whenpeople were said to either have ‘grandmal’ or ‘petit mal’ seizures. Theseterms are now outdated, particularlyas they do not, in any way, convey thecomplexity and multiplicity of the dif-ferent seizure types. While most peoplewill imagine the stereotypical fallingto the ground, jerking, shaking andfrothing at the mouth, most seizuretypes do not involve convulsions.

Different types of seizuresSeizures can be divided into two

groups: partial seizures and gener-alised seizures, although a partialseizure can spread throughout thebrain to become a secondarily gener-alised seizure.

Partial seizures always start in justone hemisphere of the brain, some-times involving the whole hemisphereor possibly just a small area withinone of the lobes. There are three typesof partial seizure.

Partial seizuresIn a simple partial seizure only a

small part of the brain is affected. Theperson will be totally conscious andmay recognise that they are having aseizure. Signs of the seizure mayinclude twitching of a limb or part ofa limb, or the individual may justexperience an unusual smell or taste,or a tingling like pins and needles.These symptoms are sometimesreferred to as an aura.

Complex partial seizures willinvolve a greater portion of the brainand the person will be in a state ofaltered consciousness, possibly wan-

dering about, fiddling with clothesand other objects, sometimes mum-bling or making other noises, chew-ing or smacking their lips. The behav-iour will often seem bizarre to others,especially as the individual may reactwhen another person speaks to them– but may not understand or properlyhear what is being said. People expe-riencing complex partial seizures mayoften be mistaken for being drunk orunder the influence of drugs, or theymay find themselves being compro-mised by their actions during theseizure.

Sally Gomersall, a mother of twofrom Newark, experienced complexpartial seizures for many years beforehaving successful surgery. She said: “Iwould come out of the seizure notknowing where I was or where I hadbeen, only to see the faces of otherpeople looking at me as if I was drunkor just simply weird. One time I had acomplex partial seizure on a stationplatform. I fell onto the railway line,yet no one came forward to help me, Iguess because they were ignorant ofwhat was happening.”

Both simple partial and complexpartial seizures can spread across thebrain into a secondarily generalisedseizure with total loss of conscious-ness, sometimes spreading so quicklythat the partial phase may not even benoticed.

Generalised seizuresGeneralised seizures involve the

whole brain from the outset and oftenhappen with no warning whatsoever.The individual will be totally uncon-scious for the duration of the seizure.Such seizures include the tonic clonic– convulsive – seizure in which themuscles will tighten and relax rhyth-mically making the body jerk orshake; if standing, the person will fallto the ground, their breathing maystop or become difficult, their skincolour may change turning blue-grey,they may cry out at the start of theseizure, may bite their tongue orcheek and may be incontinent. This isthe seizure type that used to be knownas ‘grand mal’.

Cosima Pole, a London-baseddesigner, said: “I will sometimes comeround from a tonic clonic seizure witha scratched face and bruised body, alacerated tongue and blood every-where, with every single musclescreaming at me, yet I won’t know myname, where I live or where I am. Butby the feelings in my body and thefear and horror rushing through myblood, I know I’ve just had a seizure.”

Embarrassment following theseizure can be one of the worst effects– knowing you have been completelyout of control and unconscious yethaving no knowledge of what youhave done during the seizure. It’s theloss of dignity – and the indignanceon other people’s faces – that can beso hard to cope with.

At the other end of the spectrum ofgeneralised seizures is the absenceseizure, formerly known as ‘petit mal’.During an absence seizure the personis briefly unconscious and unrespon-sive, possibly staring blankly for afew seconds or with the eyelids flick-

ering. Such seizures may be so briefthat they go unnoticed. Other gener-alised seizures include tonic seizuresin which the muscles suddenly stiffen,atonic seizures in which the musclessuddenly relax, and myoclonicseizures which involve sudden jerkingof a limb or limbs.

Between these seizure types aremany variations. Epilepsy is verymuch an individual condition. No twopeople’s experiences will be exactlythe same and some people may expe-rience just one seizure type while oth-ers may experience a varied mix.

What to do if someone has aseizure● Make the environment safe, moving things away if there is risk

of injury● Only move the person if they are in a dangerous place and, if the

person is convulsing on the ground, place something soft under the head to protect it

● Allow the seizure to take its natural course; do not try to restrain the individual and never put anything in the person’s mouth

● Stay calm, noting how long the seizure is lasting● Do all you can to minimise crowding and embarrassment

There is usually no need to call an ambulance, unless:● The person has been injured during the seizure, or has trouble

breathing after the seizure● Another seizure follows on, with no recovery in between● You know it is the person’s first seizure● The seizure lasts for two minutes longer than is usual for that

individual – or, if you don’t know the person, the seizure continues for more than five minutes.

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Finally seizure freey

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UCB are committed to improving the lives of people withepilepsy. As one of the world’s leading biopharmaceuticalcompanies, we market and develop innovative treatmentsfor epilepsy which exploit the very latest scientific discov-eries.

But we are doing much more than this, the patient is al-ways at the forefront of our research. We aren’t just devel-oping the most effective treatments for epilepsy, we wantto make a meaningful difference to the epilepsy commu-nity: to patients and their families, and to the doctors,nurses and all those who care for them. From laboratorybench to bedside, the patient comes first.

Epilepsy affects over 450,000 people in the UK (that’sone in every 131 people). But an estimated 70% of pa-tients could be free of seizures if they had the right treat-ment for their particular epilepsy. Over the past 12months, we at UCB have made significant progress in de-veloping a portfolio of medicines to ensure that more peoplecan get the treatment they need for their type of epilepsy.

Our planned acquisition of Schwarz Pharma – an inno-vative pharmaceutical company with a pipeline of excitingnew medicines which complements our own – will enableus further to expand our capabilities and investment intreatments for brain and nervous system diseases, and tobecome a global leader in the field.

But our work does not end when our products leave thebuilding.

At UCB, we believe that more people need to under-stand what epilepsy is – and what it isn’t. We want tospread the word that, around the world, millions of peoplewith epilepsy are leading happy, healthy fulfilling lives.That is why we are supporting educational initiatives thataim to broaden both medical and public awareness andunderstanding of epilepsy.

We are focusing on empowerment. Through the ‘TakeControl’ initiative, established by Epilepsy Action, wesupport efforts to reach out to those who are disengagedfrom the health care system and to encourage them to be-come more involved in the treatment process and themanagement of their own condition.

We also support a number of projects from the Na-tional Society for Epilepsy. One of these – the Epilepsy In-formation Network (EIN) – helps patients to accessinformation about epilepsy and provides volunteers whooffer valuable help and support to patients at hospitalsacross the UK.

We work with health care specialists on the best ways tohelp patients live with epilepsy. Our Epilepsy Masterclassprogramme helps doctors and nurses who care for peoplewith epilepsy to keep up to date with the latest advances.Our Epilepsy Ambassador scheme enables people withepilepsy to talk about their experiences to both medicaland non medical audiences, thus improving understandingof the needs of patients, and the challenges of living with

epilepsy. We also support the Epilepsy Action Sapphirenurse programme, which pump primes the specialistnurse positions that are critical to creating a personalised,effective treatment programme for patients.

UCB is not just a biopharmaceutical company. We area company committed to developing holistic, innovativesolutions to diseases of the brain and nervous system,such as epilepsy. From our dedication to cutting-edgeresearch, to our commitment to education and training, toour engagement with our partners in the field of epilepsy,we are improving the lives of patients here in the UK andfurther abroad. It is this ‘patient-centred’ ethos that is atthe core of our culture.

UCB – dedicated to epilepsy

For more information on the Take Control initiative please visit: www.takecontroluk.org

07KP0023

Throughout his childhood he experi-enced dozens of small absences, whichwent unnoticed, and he learned tocope with. He was finally diagnosedwith epilepsy as a teenager following adramatic tonic clonic seizure shortlyafter passing his motorcycle test.

Now in his 40s, Mark has been pre-scribed most of the anti-epilepticdrugs available.

Mark said: “I had mixed feelingswhen my diagnosis was confirmed. Isuppose that there was a sense of reliefthat there was a reason for what hadhappened to me. At the same time I feltreally vulnerable. I had just started atuniversity and despite medication myepilepsy wasn’t controlled. I felt Iwould stand out from everyone else if Ihad a seizure when all I really wantedto do was blend in. I found myself fac-ing the dilemma, who should I tell andwhen should I tell them.”

The ketogenic dietThe Ketogenic diet is a high fat, low carbohydrate, adequate protein diet,which has been shown to dramatically end or reduce seizures in children. Itmay used as an alternative to, or in conjunction with, AEDs. It can be a diffi-cult diet to follow but may be effective in a significant number of children withepilepsy, though not all. Trials are on-going at Great Ormond Street Hospital.

The diet was first developed in the early part of the last century. It works bymimicking the effects of starvation. When fasting or starving, your body firstuses up glucose and glycogen before burning up stored body fat. In theabsence of glucose it produces chemicals called ketones which provide ener-gy. The diet alters the body’s metabolism by replacing glucose with fats as amajor energy source. The broken down fat produces ketone bodies that helpto alleviate seizures in some people.

Calories and proportions of nutrients on the diet are carefully controlled.Weight gain can sometimes be a problem if the prescribed amounts are exceed-ed, but in most cases this does not happen as the child’s weight is carefullymonitored and the dietary prescription altered as necessary. Close partnershipworking between the child’s family or carers and the clinical team is vital.

Some children’s seizuresrespond very quickly to thediet, others can take up tothree months and somewill not respond at all.How long a child stays onthe diet will depend onhow much they seem tobe benefiting. If thechild is seizure free fortwo years, most doc-tors would suggest atrial of slowly return-ing to a normal diet.For more information,contact Matthews Friends0788 4054811

Top London lawyer and legaladvisor to many celebrities,Mark Stephens has lived withepilepsy for most of his life.

Eventually Mark told his universityfriends and was reassured by theirreaction. He said: “Despite that, I didgo through a period of rebellingagainst the condition. I did all thedangerous things I’d been told not todo and went through a period ofrefusing to take the medication.”

As Mark’s professional career flour-ished, he struggled to gain control ofhis seizures. He experienced 20 to 30seizures a day and tried almost everyanti-epileptic drug available. “It wasas if the neurologists were playing agame of battleships with pharmacolo-gy, making guesses as to which drugmight work best.”

Then five years ago a new drugturned his life around. He is nowseizure free, is able to drive and nolonger needs to employ coping strate-gies to help keep him at the top of hisprofession.

He said: “There needs to be a greaterawareness of epilepsy and its com-plexities. I was honest with my col-leagues and clients about how epilep-sy affected me and they were under-standing. Epilepsy is so common, andyet there is still a stigma attached to it.I just hope that by telling my story itwill help raise awareness.”

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DiagnosisEpilepsy can be very difficult to diagnose and misdiagnosis rates are high. About 50per cent of newly diagnosed or suspected epileptic seizures at primary care level will,after appropriate assessment, turn out not to be epileptic in nature. Similarly, between20 and 30 per cent of people diagnosed with chronic epilepsy at secondary care level,when later fully diagnosed at a tertiary referral centre, are found not to have epilepsy.

A person is diagnosed as havingepilepsy if they have repeatedseizures that start in the brain. Any-one can have a single seizure at somepoint in their life but a one-off seizureis not epilepsy.

There are more than 50 differenttypes of epilepsy. Many only last ashort time whilst others are life long.

The National Institute for Healthand Clinical Excellence (NICE) guide-lines state that any person who hashad a possible epileptic seizure shouldbe seen within two weeks by a spe-cialist practitioner with training andexpertise in epilepsy. This specialistshould have an open mind in makingthe initial diagnosis, which mayinvolve specialist tests (see adjacent).Where required, these tests should be

available within four weeks of a spe-cialist asking for them, says NICE.

Key to diagnosis is an eye witnessaccount of the seizure and the circum-stances leading up to the seizure.Wherever possible any witness shouldattend the specialist appointment withthe patient. If this is not possibleattempts should be made to talk to thewitness or to obtain a written account.If a number of episodes take place,video footage can be very helpful.

The specialist will want to knowwhat events took place in the lead upto the seizure, if there was a change inmood, if the individual experiencedany unusual sensations such as anodd smell or taste, or if they had anywarning that the seizure was going tohappen.

Part of the diagnosis will alsoinclude looking at a person’s medicalhistory and any other medical condi-tions they may have.

The specialist may arrange for teststo be done. These might include ablood test, to rule out other possiblecauses of the seizure such as lowblood sugar or an electrocardiogram(ECG) to check the way the heart isworking.

Reactions to a diagnosisPeople react in many different waysto a diagnosis of epilepsy. Often thereis a feeling of shock. Others may reactto the loss in independence and therestrictions imposed on their life suchas having to surrender a drivinglicence.

Electroencephalograms (EEG)An EEG is used to record the electrical activity of the brain by pick-ing up the electrical signals from the brain cells, via electrodes onthe head. The electrodes only record electrical activity. When some-one has an epileptic seizure, their brain activity changes. However,unless a seizure occurs during the recording process, the test mayjust show as normal.

An EEG test normally lasts about half an hour but if activity ofthe brain needs to be monitored for longer, an ambulatory EEGmight be undertaken. During this type of EEG the electrodes areattached to a small recording machine worn around the waist. Thisallows brain activity to be recorded for hours, days or weeks.

Video telemetryThis test is done in hospital over a few days. As well as having anambulatory EEG, a video camera records what the person is doing.

This test means that the electrical activity of the brain can becompared with what the person does during a seizure. This can helpto work out what type of seizures the person has.

Magnetic Resonance Imaging (MRI) scansMRI produces high quality images of the brain. MRI is based on theprinciples of nuclear magnetic resonance (NMR) to obtain micro-scopic chemical and physical information about molecules. Thisinformation is then processed through a computer and images areproduced. As science advances and stronger magnetic fields areutilised the effect on the molecules in the brain is more obvious.Images are clearer, more detailed and with greater contrast. Theycan show scarring, damage or tumours which may be the cause ofepilepsy.

Computerised Axial Tomography (CT or CAT) scans CT scans use x rays to produce pictures of the brain. The picturesmight show an obvious physical cause for the seizures.

Information is vitally important in coming to terms with a diag-nosis of epilepsy. The NICE guidelines state that informationshould be available so that the individual is empowered to man-age their condition as well as possible and be fully involved withtheir specialist or GP as a partner in all decisions about healthcareand lifestyle.Once a diagnosis of epilepsy is established medical professionalswill assess how much information should be given, or indeed howmuch can be assimilated by the individual. The professional needsto choose carefully the right time to deliver the right informationfor that person. Access to voluntary groups is important as they can provide addi-tional information and support. Their details should be madeknown to all people with epilepsy.

Specific tests for epilepsy:

Information

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Epilepsy in children and young people

Epilepsy affects around one in 279 children.It can develop at any age, but its incidenceis highest during the first ten years of life.Around 75 per cent of epileptic syndromesbegin in childhood.

Epilepsy is not a single condition;there are many possible causes ofepilepsy and many factors that willaffect how the condition progresses.A single seizure does not mean a childhas epilepsy and a diagnosis will onlybe made on the evidence presented bymore than one seizure. Equally, whilefive per cent of children will havefebrile seizures in the pre-schoolyears this does not mean that theyhave, or will develop epilepsy.

Seizure types Seizures will vary from one child toanother in their pattern, type andintensity. A child may experience onetype of seizure or a combination. Insome children, as in adults, seizureswill only occur at night, while in othersthey may arise at any time. Seizuresrange from ‘absences’ in which there isa brief lapse of consciousness, throughto ‘tonic clonic’ seizures which are typ-ified by convulsions. Between theseextremes are many other seizure types,not all of which involve total loss ofconsciousness.

Absences occur in around 10 percent of children with epilepsy andmay be undiagnosed for many years.These brief lapses in consciousnessare often very fleeting and very fre-quent. If undiagnosed they can bemistaken for daydreaming.

Undetected absences can have aprofound effect on a child’s ability tolearn.

A known trigger of seizures is pho-tosensitivity, although it is very rare –in only around five per cent of peoplewith the condition are seizures trig-gered by flashing or flickering lights.Most children with epilepsy can usecomputers and watch television with-out any problem.

DiagnosisIf there is a possibility that a child hasepilepsy they will usually be referredto a paediatrician for diagnosis. Oftenthe paediatrician makes the diagnosisusing an eyewitness description of theseizure and other information aboutthe child’s medical history. However,to help with diagnosis a number oftests may be used. These tests aredescribed in the box to the left, andare usually painless but younger chil-dren or children with learning disabil-ities may be given a light anaestheticto help them relax and stay still. Nor-mal results from these tests do not ruleout a diagnosis of epilepsy.

Syndromes If a child has been diagnosed with anepileptic syndrome their seizureshave a particular group of character-istics that occur together. Seizuresclassified within a syndrome have atypical pattern, a typical age whenthey start and produce specific EEGrecordings. The syndrome may also

follow a definite pattern of progres-sion. Around 75 per cent of epilepticsyndromes start in childhood.

If a syndrome is described asbenign it is expected to respond wellto anti-epileptic medication and maygo away as the child grows up. Somesyndromes are more difficult to treatand may also involve learning orbehavioural problems or some physi-cal difficulties.

Treatment The majority of children with epilepsytake anti-epileptic medication (AEDs)to control their seizures. Around threequarters of children on medicationwill become seizure free.

All drugs have the potential tocause side effects. Whether sideeffects occur or not will vary accord-ing to the child and their reaction tothe drug. Medication can potentiallyaffect a child’s behaviour as well astheir cognitive, social and emotionaldevelopment.

Identification of the type of epilep-sy and type of seizures or syndrome isimportant for correct treatment. It isnormally recommended that childrenwith newly diagnosed epilepsy aretreated with one drug at a time(monotherapy) and that only onedrug alteration is made at a time.

Dosages are usually based on thechild’s body weight. The dose willgradually be increased until theseizures are controlled or unaccept-able side effects develop. If sideeffects do occur another drug may besubstituted or added to the first (poly-therapy). Gaining good seizure con-trol can sometimes take a long time.Keeping a diary of the child’s seizurescan help the specialist identify anypatterns that are emerging and helpdetermine the best treatment plan forthe child.

Most AEDs usually have at leasttwo names, a chemical or genericname and a trade or brand namegiven by the manufacturer. For any-one with epilepsy it is advisable totake the same manufactured prepara-tion all the time as preparations canvary slightly which could have aneffect on seizure control or the devel-opment of side effects.

How does the medication work?Different drugs work on differentseizures so each drug is selectedaccording to the type of seizure achild is having. Although each drughas a slightly different way of acting,they all act on the brain to suppressseizures. They do not treat the under-lying cause and do not ‘cure’ epilepsy.

AEDs do have to be taken regularly asprescribed. Most AEDs are availablein various forms to make them morepalatable for children. Some tabletsmay be chewed, sprinkled on food,crushed or dissolved.

Epilepsy and educationEpilepsy can affect children in differ-ent ways and it is important that theschool is aware of the extra supporteach child may need. Staff may needto take extra care in supervising someactivities to make sure the child andothers are not put at risk.

An individual healthcare plan canhelp staff identify the necessary safetymeasures to support a child withepilepsy. This may include informationsuch as side effects of medication, whataction to take in an emergency, what

not to do in the event of an emer-gency and who to contact. An indi-vidual care plan including all thisinformation should be agreed betweenthe parent, the teacher and appropriatehealth professionals for every childwith epilepsy. This should also includeinformation on how to manageseizures, determining if, or at whatstage, an ambulance needs to be called.

Generally calling an ambulancewill not be necessary. Most seizurestake their natural course and the childwill recover and be able to continuewith school activities. Sometimes thechild will feel drowsy and this needsto be taken account of.

However, occasionally, seizuresmay not follow the anticipated pat-tern and a situation known as statusepilepticus may develop. This is whenthe seizure continues or one seizurefollows another. Medical interventionwill be necessary.

Some children may need to taketheir medication during a school day.The school should have a medicinespolicy in place which should coverprocedures such as managing pre-scription medicines in school and ontrips and outings, a clear statement onthe roles and responsibility foradministering or supervising theadministration of medicines, and aclear statement on parental responsi-bilities in respect of their child’s med-ical needs.

If a child is having seizures, othersin the classroom may think he isstrange or may even be afraid.Knowledge and understanding arekey to breaking down fears and theteacher has an important role to playin ‘normalising’ both the child andthe situation.

Epilepsy and learning disabilitiesEpilepsy itself does not cause learningdifficulties, though as the cause isoften underlying brain damage thismay result in learning difficulties.However there is evidence that asignificant number of children withepilepsy underachieve in certain sub-ject areas. Problems in reading and, toa greater extent, in spelling and arith-metic are common. Learning capacitymay be affected, as can planning abilityand reasoning. Some AEDs mayreduce the child’s ability to concen-trate. Disturbed sleep patterns, theeffects of high levels of medicationand the likelihood of more absenteeismalso give rise to potential for under-achievement.

With all of the above taken intoconsideration, it is important toremember that children with epilepsyshould be able to participate in allschool activities, extra curricularactivities and have as normal as pos-sible a childhood.

“Keeping a diary of the child’sseizures can help the specialist identify

any patterns“

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Epilepsy in womenThere are aspects of epilepsy and its treatment which are particular towomen only. Hormonal changes can affect the way epilepsy progresses.

Although epilepsy can occur at anytime in a person’s life, research hasshown a link between hormones andseizures. This means that there can betimes in a woman’s life when epilepsyis more likely to start or seizures aremore likely to happen, such as hor-monal changes during the menstrualcycle and throughout pregnancy.

The two female hormones, oestro-gen and progesterone, stimulate orslow down brain cells. This can loweror raise a person’s level of resistanceto seizures (seizure threshold). Whenoestrogen levels are high and proges-terone levels fall, women are morelikely to have a seizure. As changes inhormone levels occur during puberty,this can be a common time for epilep-sy to start.

One in three women with epilepsyfinds that their menstrual cycleaffects their seizure pattern. Althoughthey may have seizures at any time,some women find they are more fre-quent before and during their periodor regularly occur at another stageduring their menstrual cycle such asat ovulation. Some women haveseizures only during their period andat no other time.

Polycystic Ovary Syndrome (PCOS),which can give rise to irregular orinfrequent periods is thought to bemore common in women with epilep-sy and those taking the anti-epilepticdrug sodium valproate.

ContraceptionThere are many methods of contra-ception and some may not be as

effective in preventing pregnancy forwomen taking AEDs. There is no evi-dence to suggest that taking the con-traceptive pill affects epilepsy,although it may affect the efficacy ofthe AED itself.

AEDs can be divided into twogroups, enzyme inducing and nonenzyme inducing drugs. Enzymeinducing drugs result in the hormonesin the oral contraceptive pill beingbroken down more quickly in the liver,making this method of contraceptiveless effective. Even if the dose of thepill is increased it will still be less reli-able than if enzyme inducing drugswere not being taken. The morningafter pill dose would need to beincreased by 50 per cent if an enzymeinducing drug was being taken.

Non enzyme inducing AEDs do notaffect any type of contraceptivemethod and women can use anymethod of contraception.

Contraception should always bediscussed with your GP or epilepsyspecialist.

Conception and pre conceptioncounsellingBetween 1,800 and 2,400 children areborn every year to women who haveactive epilepsy. Before consideringstarting a family there are a numberof important issues which should beconsidered.

Ideally, women with epilepsyshould talk to the doctor responsiblefor their epilepsy treatment beforethey start to plan a family, to reviewtheir epilepsy and treatment. This

allows them to be fully informedabout taking their AEDs during preg-nancy or the possible consequencesof having seizures during pregnancy.Alternatively, if a woman becomespregnant she should speak to herepilepsy specialist as soon as possibleto consider how best to manage herepilepsy during pregnancy.

Seizure patternsMost women with epilepsy do not seeany change in their seizure frequencyduring pregnancy. For those who seean increase in seizures, it is normallyassociated with not taking AEDS asprescribed, vomiting within an hourof taking medication, sleep depriva-tion or reduced drug levels. Somewomen have better controlledseizures during pregnancy.

The menopauseSome women may develop epilepsyduring a phase in their life cycle suchas the menopause. Others may findthat their seizure control improves ortheir seizures stop completely.

Hormone Replacement Therapy(HRT) does not usually cause anyproblems for women with epilepsy.

Osteoporosis is more common inwomen taking AEDs. For all womengoing through the menopause calci-um and vitamin D might be recom-mended to minimise loss of calciumfrom the bones.

In 1996 the UK Epilepsy and Preg-nancy Register was established. Itsaim is to identify which anti-epileptic medication women aretaking during pregnancy and tocollect information on the healthof their babies after birth. The pos-itive finding of the study so far isthat 96 per cent of pregnantwomen with epilepsy will producenormal babies with no major con-genital malformation.

The study has focused on estab-lishing the risks of major congeni-tal malformation, such as spinabifida, cleft palette or damaged kid-neys, to the baby due to AEDs takenwhilst the mother was pregnant.

The study has found the risks tobe increased if the mother was tak-ing more than one AED.

Further information about the UKpregnancy register, and its findingstelephone 0800 389 1248 or onwww.epilepsyandpregnancy.co.uk.

The UK PregnancyRegister

Pregnancy

● Women taking AEDs who are planning a pregnancy are recom-mended to take higher supplementof folic acid (5 mg per day) as research shows this to reduce the risk of neural tube defects .

● Women who are likely to stillhave seizures during pregnan-cy need to continue taking AEDs although their specialist may adjust the dose.

● The dangers to the baby and the mother herself from not taking medication are usually greater than those associated with taking AEDs.

● For any woman having a child there is a three per cent risk that the baby may be born with a malformation. Taking AEDs during pregnancy may increase this risk, and some AEDs could carry greater risks than others.

● The developmental abnormalities associated with AEDs may include cleft lip and palate and malformation of face, limbs and internal organs.

● During pregnancy the body uses up more AEDs, and the levels of the drug in the blood may fall. Monitoring blood levels can give a good indication if medication needs increasing. Women affected by morning sickness may need to change the time of taking their AEDs.

● Just as for all pregnant women, ultrasound scans at intervals during the pregnancy are useful to monitor a baby’s development.

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Living with epilepsy

Epilepsy is a very individual condi-tion so choices about what activitiesto participate in and how to live lifeneed to be made on an individualbasis, depending on the type and fre-quency of seizures and the level ofcontrol with medication.

What effect epilepsy has on your lifedepends on what your seizures are likeand how well the medication works.Most people carry on a normal life.

However you may feel you don’twant to go out or do the things youwould normally do in case you have aseizure.

It may help to find out more aboutepilepsy, think about some simplesafety measures or find out what sup-port there is. Finding ways of doingwhat you would like to do and keep-ing as mentally and physically activeas you can might help to make epilep-sy just part of your life and not themost dominant part.

When you are diagnosed withepilepsy the reaction of family andfriends can vary. They may feel con-cerned and want to offer help andsupport. Some may not understandwhat epilepsy is like or may becomeoverprotective. Helping them tounderstand more about the conditionand how it affects you may help.

EmploymentNearly all jobs are open to peoplewith epilepsy and having epilepsydoes not necessarily prevent peoplefrom working in the job they choose.

Epilepsy is a condition covered by

A diagnosis of epilepsy should not prevent someone from living a full and active life.

the Disability Discrimination Act. Thetype of work you can do will dependon whether you still have seizures,what they are like and how often theyhappen. However jobs in the armedservices can still be restricted by lawto people with epilepsy. Other profes-sions may have their own specifichealth regulations if a person’s

epilepsy could present a risk to safety.The point when someone tells their

current or future employers that theyhave epilepsy is a personal choice. Ifyou develop epilepsy or if your epilep-sy changes and starts to cause difficul-ties at work, your employer is expectedto make reasonable adjustments sothat you can continue to work.

DrivingFor many people one immediateeffect of having a seizure is that theyhave to stop driving. There is a legalobligation for anyone to inform theDVLA of any medical conditionwhich may affect their ability todrive. This responsibility lies with theperson themselves.

DVLA regulations say you muststop driving for a period of one yearfrom the date of your last seizure. Ifyou have no further seizures for 12months you can apply to the DVLAfor a new licence.

The DVLA recommends that any-one who is changing or stopping theirmedication should stop driving whilethey are doing this and for six monthsafterwards.

Under the Disability DiscriminationAct motor insurance companiesshould not add a premium to insurancejust because a person has epilepsy.

Air travelHaving epilepsy does not usually stoppeople from being able to travel byair. However, some people find thattheir seizures are triggered byextreme tiredness such as jetlag,excitement or anxiety, all of whichcan be caused by travelling or flying.

Risk assesmentPeople who have seizures may havelittle or no warning when they willhappen and may be at risk of injuryduring or after a seizure. The riskdepends very much on the type andnumber of seizures. Looking at waysof lowering risk can help people to dothe things they enjoy and be as inde-pendent as they would like.

There are some simple measureswhich people with epilepsy can taketo make the home a safer place. Theseinclude taking a shower rather thanbath and using a microwave ratherthan a cooker.

LeisureThe way in which we spend ourleisure time is important and individ-ual to us all, regardless of whether ornot we have epilepsy. Most leisureactivities can be made safer by adopt-ing simple safety measures to helpminimise any potential risk.

Watersport activities are oftenthose which people with epilepsyoften have concerns about. Choicesneed not be restrictive – just realistic.

For example, when swimming it isa good idea to go with someone whoknows about the type of seizures youhave and how to deal with them, andto inform a lifeguard.

Water sports such as windsurfing,sailing and canoeing are popular andneed not be a problem to someonewith epilepsy providing there issomeone on hand to manage a seizureif necessary.

Scuba diving, however, is really notrecommended for people with epilep-sy. People taking AEDs are more like-ly to experience ‘nitrogen narcosis’ –a condition which affects rationalthinking.

Having and living with epilepsy willaffect different people in different ways.What they all have in common is theability to ensure appropriate precau-tions are taken, allowing them to leadtheir lives to the fullest possible extent.

Epilepsy in the elderlyEpilepsy can affect anyone at any time of life. However, it is more common inpeople under the age of 20 or over the age of 60. One in four people who devel-ops epilepsy is over the age of 60. There are many causes of epilepsy, and someare more common in later life. As we get older our bodies start to change. Forexample, the blood vessels that supply blood to the brain sometimes becomenarrower and harder, which can affect the flow of blood to the brain. This isoften the cause of seizures in later life.

There are other medical conditionsthat can look like seizures, so as partof the diagnosis a specialist may lookat other possible causes besidesepilepsy.

For example, your specialist maytry and rule out causes like diabetes,fainting, heart problems or a cere-brovascular (CV) condition whichaffects the blood vessels of the brain.They may ask you to have a bloodtest, check your heart, blood pressureand cholesterol levels. By doing testsfor other conditions, your specialist

may be able to avoid any future prob-lems such as finding a CV conditionat an early stage.

TreatmentOnce a positive diagnosis of epilep-

sy has been made, your specialist willstart treatment. The choice of anti-epileptic drug (AED) is important,particularly if you are taking drugsfor other medical conditions. Somedrugs interact and affect how wellother drugs work. Other AEDs mayaffect memory and the ability to think

quickly. Some AEDs may increaseyour risk of osteoporosis. These areall points that have to be consideredby the specialist when prescribingmedication.

If you are taking several drugs fordifferent conditions it may be useful touse a chart, pill box or drug wallet toremind you which tablets to take andwhen. Your specialist or GP will alsohelp by putting together a treatmentplan which might include a way oftaking your AEDs at a time to suit you.

FOR MORE INFORMATION ONANY ASPECT OF LIVING WITHEPILEPSY:call the National Society for Epilepsyhelpline on 01494-601 400or visit www.epilepsynse.org.uk

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Brain imaging & epilepsy

Epilepsy arises in the brain as an electrical disturbance and may have many causes.Only for the last 30 years has it been possible to take images of the brain in life andthereby be able to visualise the many causes of epilepsy and also their consequences.

X-ray CT scans came into clinical usein the mid 1970s and for the first timeshowed the structure of the brain.Large abnormalities such as tumours,blood clots, strokes and abscessescould be demonstrated. In addition toleading to a better understandingabout the causes of epilepsy, this alsounderpinned the development ofepilepsy surgery, that is surgery toremove the cause of the epilepsy withthe hope of stopping the occurrenceof epileptic seizures.

In the subsequent years, magneticresonance imaging was invented inNottingham and the first reports ofMRI in individuals with epilepsyappeared in 1984. It rapidly becameapparent that MRI provided muchbetter definition and identification ofsubtle abnormalities in the brain thandid X-ray CT. Over the last 20 years,MRI has become more and moresophisticated as a result of manytechnological advances, not only inthe design of the magnets and instru-ments, but also in the computingequipment required to programme thescanner to take images in differentways and to analyse the enormous

amounts of data that are now pro-duced by an MRI scan.

The core of the MRI scanner is themagnet with the strength of the mag-net being measured in Tesla. The firstMRI scanners had magnet strengthsof 0.3 Tesla. The current state-of-the-art standard for clinical MRI scanningis 3 Tesla. Current MRI scans show thestructure of the brain in exquisitedetail, showing the details of the greymatter and the white matter and theprecise folding of the brain, with theability to show structures and abnor-malities no more than a few millime-tres across. Increasingly we are ableto see subtle malformations of partsof the brain in addition to small areasof scarring that commonly give rise toepilepsy.

Imaging methodsThere are many new ways of acquir-ing scans that give more informationin addition to the standard scans inwhich the images are essentiallybased on the concentration of waterin different parts of the brain tissue.For example, magnetisation transferimages reveal the interaction and

binding of water with large mole-cules, particularly proteins, in thebrain. Diffusion tensor imaging visu-alises the movement of water withinthe brain. If an area of brain is dam-aged or disorganised there will com-monly be more space between theindividual nerve cells and so water ismore mobile and this can be visu-alised with a diffusion scan.

The nerve fibres in the brain arearranged like small tubes. Water maymove along these tubes much moreeasily than it may move from side to

side. The analogy would be that watermight move up and down a stick ofcelery much more easily than it canmove sideways. With the visualisationof the movement of water within thesenerve fibres, the nerve fibre connec-tions within the brain can be pickedout, using the technique known astractography. This is giving us dramat-ic new insights into how one part ofthe brain is connected with other partsand how these interact with eachother. For example, we have been ableto show that the connections in thebrain between the part of the brainthat understands language and thepart that generates words on the left-hand side of the brain is reduced inthose with epilepsy arising in this area.

We have also recently been able toshow, for the first time, the connec-tions in the brain that appear to carrythe spread of epileptic activity fromone part of the brain to another. Thisinformation is beginning to beextremely useful in the planning ofsurgical treatments. In addition to pre-dicting the risks of surgery, the infor-mation can be made available to thesurgeon so that an operation may beplanned to minimise the risk of dam-age to the important connections. Theanalogy in day-to-day life would bethat the grey matter of the brain is thecity and towns and the connectionsbetween the areas of the brain are themotorways joining up the cities andtractography demonstrates thesemotorways.

Functional MRIOver the last 10 years what is knownas Functional MRI has been inventedand put into practice. Essentially inthis process, the MRI scanner is tunedinto the delivery of blood into variousparts of the brain. If the activity of thepart of the brain is increased, the flowof blood increases and this can bepicked up by the scanner. This may beused to visualise the parts of the braininvolved in normal functions forexample moving a right hand willcause an increase in blood flow to themiddle outside part of the brain onthe left-hand side. Similarly, morecomplicated tasks such as memory,thinking of words, looking at a fearfulface as opposed to a neutral face willall result in activation of the relevantparts of the brain.

Thus, functional MRI can be used forseeing which part of the brain carriesout functions and how the differentparts of the brain interact and workwith each other. We are beginning tounderstand, using this technique, howepilepsy arising in different parts ofthe brain may affect memory andcognitive processes. For example, inthose with epilepsy arising in thetemporal lobe on the left, trying toremember new words, which normal-ly would activate the left temporallobe, is much reduced. By recordingthe electrical brainwaves and epilep-tic activity during such a functionalMRI scan, we can also now mapwhere in the brain epileptic activity isoccurring. By combining this withfunctional MRI of normal actions andexamining the white matter tracts wecan assemble a 3-dimensional map ofareas of the brain that are functioningabnormally and normally and use thisto plan the best treatment approach.

SpectroscopyIn addition to looking at the structureof the brain, the MR scanner can beused to measure the concentration ofdifferent brain chemicals such as glu-tamate and gamma-amino butyricacid (GABA). Glutamate is crucial tothe working of the brain, is released bynerve cells and makes other nerve cellsfire off. When present in excess, in thewrong area at the wrong time, anepileptic seizure may occur. In con-trast, GABA (also produced by nervecells) makes other nerve cells quietendown. The measurement of these vitalchemicals in the brain using MR spec-troscopy is giving us vital new insightsinto the chemical process for brainactivity and how this may go wrong inconditions such as epilepsy.

“Increasingly we areable to see subtle malfor-

mations of parts of thebrain in addition to small

areas of scarring thatcommonly give rise to

epilepsy“

“If the activity of thepart of the brain is

increased, the flow ofblood increases and thiscan be picked up by the

scanner“

BY PROFESSOR JOHN DUNCAN, HEAD OF THE DEPT OF CLINICAL AND EXPERIMENTAL EPILEPSY, INSTITUTE OF

NEUROLOGY UCL. ALSO MEDICAL DIRECTOR OF THE NATIONAL SOCIETY FOR EPILEPSY

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MRI, or Magnetic Resonance Imaging, is usedto help in the diagnosis of many types of neu-rological disorders, including epilepsy. Thescans, which take between 15 and 30 minutes,require patients to lie absolutely still. Anymovement and the resulting image may notbe clear enough for doctors to make an accu-rate diagnosis.

The stark fact is, up to one in 10 people need re-scanningbecause motion causes blurred images, making their MRIscans impossible to read. With MRI scanning costs ataround £360 per hour, the expense of uncontrolled move-ment soon mounts up. The prospect of an MRI brain scanto investigate a suspected neurological disorder can be up-setting enough. In people with suspected epilepsy, anMRI scan may be used to look for scar tissue, tumours orphysical damage that may be causing seizures. For a pa-tient who may already be a little nervous, the prospect ofa re-scan if they cannot hold still is of little comfort.

For some, the answer has been sedation. However, onein six children does not respond adequately to the seda-tion used during such scans, and one in 14 does not re-spond at all. Adult sedation or general anaesthesia servicesare not generally available in MRI suites. Now a techno-logical breakthrough from GE Healthcare is revolution-ising the use of MRI in neurology by using a software

sequence to dramatically freeze patient motion.GE Healthcare has produced the world’s first high def-

inition magnetic resonance system. Its PROPELLERHigh Definition technology now gives doctors unprece-dented image clarity even if patients move. This is criticalin epilepsy research, because looking at lesions in the hip-

pocampus of epileptic patients requires very high reso-lution images with good tissue contrast to see the inter-nal structures. It is also of immense benefit in all sortsof clinical settings, from imaging in restless children topatients with Parkinson’s Disease, Alzheimer’s and otherconditions that cause involuntary movement.

“Studies with our clinical partners show that even if pa-tients rock their heads from side to side continuously dur-ing a scan, doctors using our system still get good qualityimages to aid in diagnosis. It’s remarkable, saving time andmoney,” says Nigel Mason, Country Manager at GEHealthcare UK. PROPELLER benefits anyone having anMRI brain scan by improving the quality and resolutionof images by allowing more data to be acquired, and re-moving many other causes of image degradation. It pres-ents the highest quality images possible to help with aneffective diagnosis, making life easier for patients and doc-tors alike.

Professor John Duncan, Medical Director at the Na-tional Society for Epilepsy, says: “The use of the PRO-PELLER method of acquiring MRI scans is a major stepforward as the blurring of images that result from evenminute movement is taken out. This gives greater clarity ofimages in everyone, as no one can stay completely motion-less during a scan. Further, it is now possible to get goodimages of the brain in those who are restless and have dif-ficulty in keeping still.”

Difficult diagnosis simplified by hi-tech MRIMoving during an MRI scan can ruin the images. Fortunately there is a hi-tech solution

Above: Intermittent 90°-left-to-right, and up-and-down head movement without(left) and with (right) PROPELLER HD

Serial scanning It has long been questioned whetherepilepsy and epileptic seizures mayresult in brain damage. By taking pre-cise scans at intervals and measuringthe sizes of different parts of the brainthis can be addressed. In a large studythat we recently carried out, we con-cluded that in those who have epilep-sy that continues despite treatment, 1person in 3 will have loss of nervecells in the brain that result in shrink-age that can be picked up on the MRIscans. This information will be veryimportant to evaluate whether treat-ment designed to prevent damage tothe brain are effective.

Other imaging methodsComplementary to MRI scans are theisotope-based techniques of PositronEmission Tomography (PET) and Sin-gle Photon Emission ComputerisedTomography (SPECT). These tech-niques involve the injection of aradioactive isotope into the blood-stream, which is then taken up by thebrain.

The main use of SPECT is to imagethe distribution of blood-flow to thebrain. If this can be done in-betweena seizure and then at the time of anepileptic seizure, a subtraction ofthese images will show the change inblood-flow that occurs when a seizurehappens. This can then be mappedonto the anatomical detail provided

by the MRI scan and give an impres-sion of the part of the brain that isinvolved in generating the seizures.This can be very useful in those indi-viduals who are candidates for epilep-sy surgery when the MRI scans andother data have not given sufficientlyclear information to pin-point thesource of the epilepsy.

The main use of PET is to visualisethe usage of glucose by the brain and,in epilepsy practice, can be used to

identify areas where there is reducedusage of glucose that acts as a markerfor the area where seizures are likelyto be arising from. In a research con-text, PET can also be carried out withspecific chemicals labelled withradioactive tracers that pick out spe-cific chemical pathways in the brain.For example, opioids are chemicalsproduced in the brain that are the nat-ural analogue of drugs like morphine.Opioids are released in the brain fol-lowing seizures and are believed to

have role in the suppressionof seizure activity. By usinga PET scan to measure theopioid receptors in the brainin-between and followingseizures, it has been possibleto show that in the hoursfollowing a seizure thesereceptors are increased, withthe inference that the anti-seizure defence mechanismsare being tuned-up at thesetimes. PET scans with spe-cific chemicals and tracersare extremely demandingand expensive and will beconfined to the researcharea rather than to regularclinical use, but they givevery important insights intohow the brain works andhow it malfunctions inepilepsy and can give a leadas to possible future direc-tions of pharmacologicaltreatment.

Ongoing epilepsy careThe National Institute for Health and Clinical Excellence (NICE) guidelines state that:● Adults with epilepsy should have a review at least once a year by their GP or

specialist. Those who continue to have seizures or side effects or need particularadvice, such as women planning a pregnancy, should be referred to a specialist bytheir GP.

● Children should be reviewed by a specialist at least once a year, or more often ifnecessary.

People with difficult to manage epilepsy should be referred to a specialist centre if:● Their epilepsy is not controlled with medication within two years● Their epilepsy is not controlled with medication after two drugs have been tried● They are experiencing, or at risk of, unacceptable side effects from medication● Their epilepsy is associated with a psychological or psychiatric condition● There is a possible doubt over the diagnosis of the seizures or syndrome

The specialist service should include a multi-disciplinary team who are experienced inthe assessment of people with complex epilepsy and have access to investigations andboth medical and surgical treatment. Individuals with controlled epilepsy but with con-cerns about specific issues such as pregnancy should also have access to this service.

The treatment gapAlthough anti-epileptic drugs have the potential to stop seizures in around 70 per centof people, in reality only around 52 per cent of people achieve control with thesedrugs due to lack of optimal services. This equates to around 82,000 people withepilepsy having seizures when they could be seizure free.

It would cost around £130 million a year to improve epilepsy healthcare and reducethe number of people falling into this treatment gap. The payback would be a savingin excess of that figure by reducing the cost of misdiagnosis, estimated to be morethan £160 million, and disability living allowance.

“The main use of SPECTis to image the distribu-tion of blood-flow to the

brain“

Professor John Duncan

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The role of geneticsTwo thousand years ago Hippocrates recognised thatinheritance, or genetics, plays a role in epilepsy. Todaywe know that there are many different types of epilepsy,and have identified over 12 different genes’ mutationswhich cause epilepsies that run in families. Sometimesthis allows us to identify the genetic change that isresponsible for causing the condition, giving us insightsinto how epilepsy occurs and how it might best be treat-ed. There are however also cases where people withepilepsy have no family history of the condition, but alsoturn out to have mutations in some of these same genes.

Most of these genes encode proteinsthat act as controllable pores in thewalls of brain cells, or neurons. Theactivity of these pores is usually close-ly coordinated and controlled and isresponsible for the firing of neuronsand thus eventually for much of theactivity – normal and abnormal – ofthe brain. Mutations in the genes thatencode these pores often lead to dis-ruption of their function, and eventu-ally to seizures and epilepsy.

Genetic research into rare epilep-sies, more common epilepsies, andinto responses to treatment, is helpingus achieve a fundamental understand-ing of the very basis of the epilepsies,and to think in new ways in the searchfor better treatments for them.

In my own research group at theNational Society for Epilepsy, work-

ing in partnership with the Institute ofNeurology and Duke University in theUSA, we are running the largestepilepsy genetics project of its type inthe world to date, in more than threethousand patients. Amongst othermilestones, we have identified geneticvariations that influence the dose ofcertain anti-epileptic drugs. Hopeful-ly, this type of research will provideimportant information on how genet-ics influences epilepsy in many peo-ple with the condition.

Such research is also likely to pro-duce tests that will guide treatmentwith anti-epileptic drugs, perhapsallowing us to make better choices ofwhich drug, and how much, to use inwhich patient, and what adverse reac-tions we might expect – or prevent. Itis predicted that relatively soon,

genetic profiling, based on analysis ofa single blood sample, may signifi-cantly improve the lives of peoplewith epilepsy. In the longer term,genetic research may direct thedesign of new treatments, and per-haps even begin to generate rationalcures and preventions.

The genetic code – a blueprint Each person’s genetic code might beconsidered a blueprint or manuscriptjust as a manuscript for a play guidesactors who make it an entity with life,character and individuality. Manu-scripts that have been around for cen-turies often come in slightly differentversions. In the same way every personhas the same basic set of genes, ormanuscript.

However as a result of changes

accrued by generations over millennia,each of us has our own, unique, indi-vidual version inherited from our par-ents, distinguished by slight differencesbetween individuals at several pointsthroughout our individual manu-scripts. The manuscript is the“genome”.

Broadly speaking, the humangenome contains some 30,000 genes,each of which encodes a protein –which might be considered the actorsin the play. Variations in genes comein several different forms, of whichthe most well-studied, and probablythe most common, are called “singlenucleotide polymorphisms”, or SNPs.Currently, we believe SNPs underliemany of the inherited differencespeople have in a range of characteris-tics. Such characteristics encompass

not only normal attributes, such asheight, but also traits such as suscep-tibility to various diseases andresponses to the drugs used in theirtreatment.

Most SNPs are comparatively com-mon. Some variations in the genome,however, are rare or very rare. Suchmutations may be harmful to thosethat bear them, causing rare, oftenserious, diseases. Familiar examplesare Down’s Syndrome, usually causedby an extra copy of an entire part ofthe genome bearing several genes,known as a chromosome, andhaemophilia, at least one type ofwhich is caused by a genetic muta-tion, usually inherited, in a gene thatencodes a protein essential for theclotting of blood.

These enormous strides in ourknowledge of the human genome,and in our ability to examine largenumbers of SNPs in large groups ofpeople with epilepsy, have enabledstudy of how common genetic vari-ants both affect the risk of developingmore common types of epilepsy, andthe responses to anti-epileptic drugsin those epilepsies. Such work isbeginning to show how genetic vari-ants might increase the risk of certainserious adverse reactions to anti-epileptic drugs. For example, we nowknow that certain patterns of SNPsinherited together greatly increase therisk of developing severe allergicreactions to carbamazepine in peopleof Chinese ancestry.

In order for this important work tocontinue, the NSE now needs a multi-million pound investment in itsresearch facilities, to create a worldclass epilepsy genetics centre whichwill enable its research to be useddirectly in clinical practice.

For more information, seewww.epilepsynse.org.uk/genetics

Dr Sanjay Sisodiya, Consultant Neurologist, National Society for Epilepsy.

BY DR SANJAY SISODIYA

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A global perspectiveon epilepsy Epilepsy is a global condition, respecting no geographical borders and potentiallyaffecting anyone, irrespective of race. A lot is known about potential risk factors forepilepsy in the so-called developed world although it is fair to say that even today,with the benefit of sophisticated diagnostic tests, the causes of epilepsy for a signifi-cant minority of people remain unclear.

The great majority of patients withepilepsy, are not in rich countries butin resource-poor countries where lessis known about the possible causes ofepilepsy. Over 80% of the world’spopulation lives in resource-poorcountries and therefore it is no sur-prise that well over 80% of peoplewith epilepsy live in such countries.Indeed, it is often said that people inpoor societies are more likely to devel-op epilepsy than those in wealthier

populations. The reasons are not fullyunderstood but are likely to be associ-ated with lower standards of livingand poorer sanitation and hygiene.

Different causes of epilepsySome causes of epilepsy, including

diseases of brain blood vessels andhead injuries, exist throughout theworld. Some causes, however, such asbacterial, viral, fungal and parasiticinfections, are more frequent inresource-poor countries. A largenumber of people who developepilepsy in the tropical world do sodue to potentially avoidable causes –from diseases, infections and para-sites. These could be avoided withbetter sanitation, hygiene and nutri-tion, and by better healthcare. Unfor-tunately, in resource-poor countrieshealthcare is sometimes non-existentand diseases are often widespread.

Some of the most preventablecauses of epilepsy include infectionssuch as malaria and neurocysticerco-sis. A study of children in Kenya whosurvived cerebral malaria found thatmany went on to develop epilepsy.

This is also likely to be happening inother regions in which malaria isendemic. It is no surprise that theWorld Health Organisation (WHO) hasdeclared the eradication of malaria asone of its main priorities. Malaria cankill but also has the potential to causesuffering many years later if the per-son survives.

Neurocysticercosis is another infec-tious condition often associated withepilepsy. It is said to be the most com-mon cause of epilepsy in many partsof the developing world and isresponsible for 50% of all neurologi-cal problems in some parts of Indiaand Latin America. Neurocysticerco-sis is caused by the pork tapeworminfection. The worm sits in the humanintestine and releases eggs which arepassed in stools. If these eggs areeaten by a pig, they develop into cystswithin its muscles. If people eat thesecysts in undercooked or raw pork,they can get tapeworms, but not neu-rocysticercosis. However, if humansingest the eggs through contaminatedwater or food then they may developneurocysticercosis. In humans the

cysts often develop in the brain ratherthan in muscles. Once in the brain acyst may cause inflammation andswelling which in turn may triggerepileptic seizures. Improving sanita-tion, so that pigs and humans do notcome into contact with human waste,could help reduce dramatically therisk of this disease and consequentlythe burden of epilepsy.

It is interesting that not everyonewho develops these brain infectionsgoes on to develop epilepsy. Part ofthe answer may lie in the person’sgenetic make-up. The interactionsbetween genetic factors and environ-mental factors such as poor sanita-tion, poor diet and poor healthcaresystems are not well understood butare likely to play an important part inthe risk of developing epilepsy. This isan area in which further studies areurgently needed to decrease the glob-al burden of epilepsy.

The treatment gap in resource-poor countriesIn developed societies up to 70% ofpeople with epilepsy may have theirseizures fully controlled with appropri-ate medication and the majority ofpeople with the condition do receivetreatment in the form of anti-epilepticdrugs. However, in the poorer countriesthe great majority of people receive notreatment and suffer as a result. TheWHO has estimated that over 80% ofpeople in resource-poor countriesreceive no attention, medical or other-wise, for their epilepsy. In many ofthese countries epilepsy is a costly con-dition to treat, and often not consid-ered a priority. Often anti-epilepticdrugs are not available. Coupled with ashortage of facilities and medical per-sonnel, this makes diagnosing andtreating epilepsy very difficult.

In some countries there is alsostrong stigma surrounding epilepsy;people may prefer not to disclose

having the condition, or the personmay be hidden away from society. Insome cultures epilepsy is not seen as amedical or neurological condition butas a spiritual one, as possession byevil spirits. In parts of Africa manypeople with epilepsy are cast out.Managing epilepsy as we do in the UKwould not necessarily work every-where. When it comes to developingservices for epilepsy, we need to takeinto account the local structures forhealthcare and people’s belief sys-tems, and provide services tailored toeach individual country.

Bringing epilepsyout of the shadowsA few years ago the WHO, in collabo-ration with a number of non-govern-mental organisations in the field ofepilepsy, launched a programmecalled the Global Campaign againstEpilepsy aiming at increasing aware-ness and decreasing the treatmentgap. Initiatives have been developedin several countries with variousdegrees of success. Projects in Braziland China have been particularly suc-cessful. In Brazil, the project served asthe embryo of a national epilepsyprogramme which is now beingimplemented. In China, epilepsytreatment has reached rural areas andthe Chinese Government is now tak-ing the programme into 16 provinces,reaching thousands of people. Muchremains to be done to increase globalunderstanding of epilepsy, its diagno-sis, treatment and management andto get it out of the shadows – but afirst step has been taken.

Professor Ley Sander

Epilepsy related deaths

BY JANE HANNA, DIRECTOR, EPILEPSY BEREAVED

Many people, often including healthcare professionals,mistakenly think that epilepsy is a benign condition. It isnot. There are at least three seizure related deaths everyday in the UK. Sudden Unexpected Death in Epilepsy(SUDEP) accounts for just over half of these deaths, withyoung adults most affected.

When SUDEP occurs families and car-ers often experience bewilderment,isolation and prolonged distressbecause they do not realise that aseizure can be fatal; the death usuallyoccurs during sleep and is whollyunexpected. Although the mecha-nisms are not fully understood,research shows that a seizure can trig-ger a person’s breathing to stop, orcause a fatal heart rhythm. Prelimi-nary research has identified that someSUDEP deaths may be preventedthrough the use of a pacemaker inpeople with epilepsy who experience

seizure-related cardiac events. Nightseizure monitors are also beingresearched for their effectiveness inalerting other members of the familyor professional carers to a night-timeseizure.

Just because someone has a diag-nosis of epilepsy does not mean thatthey are at risk of SUDEP so it isimportant that people with epilepsyaccess accurate individualised infor-mation from the clinician or nurseresponsible for managing theirepilepsy. Like other chronic condi-tions such as asthma it is then impor-

tant for there to be discussion on thedifferent options for managing anyrisk. Tailored information on SUDEPis part of the general package ofessential information that people withepilepsy need so that they can makerelevant treatment decisions and life-style choices.

In terms of general statistics,although SUDEP can affect any age itis much rarer in children and morecommon in young adults. The mostsignificant risk factor for SUDEP isthe occurrence of seizures with stud-ies reporting a 23-fold increased riskof SUDEP for people who have notbeen seizure free during the precedingyear compared to people with fullycontrolled seizures. Generalisedtonic-clonic seizures and night-timeseizures are the types of seizures mostassociated with SUDEP, yet there aresome types of seizures carrying littleor no risk. National guidelines on theepilepsies state that the risk of SUDEPis very much lower if a person’sseizures are being controlled and peo-ple with epilepsy and their carers arealert to the risks of night-timeseizures.

The good news is that for every 10patients with epilepsy, 7 can be

seizure-free on the right medication.Seizure-freedom is the major factor inimproving quality of life for peoplewith epilepsy, but it is also the mostimportant way of reducing the mostsignificant risk factor for fatalities inepilepsy.

The problem is that many peoplewith epilepsy do not have the choiceof accessing a specialist epilepsyservice offering prompt and accurateinvestigation, diagnosis and treat-ment. We know that four out of 10patients in every GP Practice could beseizure free, but are not.

In 2002 a UK government fundedreport on epilepsy deaths led byEpilepsy Bereaved working with med-ical royal colleges found that up to400 of 1000 epilepsy deaths werepotentially avoidable. Some deathsoccurred whilst patients were on longwaiting lists to see a doctor withexpertise in epilepsy. For manypatients, the nature and frequency ofseizures they were experiencing werenot being monitored by GPs and, ifthey were, action was not alwaystaken to refer to specialist services.Most did not access epilepsy specialistnurse services and many of those whomight have benefited from epilepsy

surgery to stop their seizures had notbeen considered. There was a totallack of information on managementof the risks of fatality from a seizureeven though the people who diedwere not known to be seizure-free.

The numbers of deaths from epilep-sy have not fallen since 2002. Propos-als for new legal powers for Coronersto insist on a report from a hospital orgeneral practice on preventabledeaths may provide a valuable legalchallenge to drive improvements toservices, but there remains an urgentneed for political action by govern-ment to tackle the low priority afford-ed to epilepsy.

Whilst bereaved families wait foraction, NICE recommends that whenSUDEP occurs health professionalsshould offer information on SUDEPsupport services. Epilepsy Bereavedoffers a confidential SUDEP servicefor anyone affected by a bereavementthrough epilepsy and an opportunityfor bereaved families to be active inthe SUDEP campaign.

Contact Line – 01235 772852 www.sudep.org

BY PROFESSOR LEY SANDER, NSE PROFESSOR OF NEUROLOGY & CLINICAL EPILEPSY AND HEAD OF THE WHOCOLLABORATIVE CENTRE FOR RESEARCH & TRAINING IN NEUROSCIENCES, LONDON UK

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Bio-feedback – consciouslycontrolling activity in the brainBio-feedback is a technique which may be helpful for people who experi-ence partial seizures or secondarily generalised seizures that begin withsome kind of warning or aura. Over time some people can learn skills tohelp to consciously control activity in the brain. In some people this mayhelp stop the seizure spreading. Furthermore, the technique may increase aperson’s self-esteem by giving them a sense of control over their epilepsy.This therapy is not widely used, as it requires a lot of input from the thera-pist, and much practice and time on the part of the patient to achieveresults. Biofeedback may be offered to adults and young people in clinicalpsychology departments in some hospitals.

ComplementarytherapiesResearch into the use of complementary therapies inepilepsy is currently limited. Although there isgrowing interest and more work is being carried out,there is currently little scientific evidence as to theeffectiveness of many of complementary treatments,and the outcome is often variable.

Complementary therapies are often referred to as alternative therapies. Inthe case of epilepsy they should not be considered an alternative to anti-epileptic drugs. They can, however, sometimes be used as a complementto conventional medicine, to help improve wellbeing and give people asense of taking control of their own bodies and their lives. However,while some people may find complementary therapies beneficial, othersmay find they interfere with seizure control.

Relaxation therapies, such as massage, acupuncture or reflexology, canbe helpful for those people who find they have more seizures at times ofstress of anxiety, but great care needs to be taken with aromatherapy.Although certain aromatherapy oils such as jasmine, ylang ylang,camomile and lavender have a calming effect and may be helpful inimproving seizure control, other oils such as hyssop, rosemary, sweetfennel and sage are thought to have an alerting effect on the brain andmay trigger seizures in people with epilepsy.

Some herbal medicines may interfere with seizure control. In particularAyuverdic medicines may aggravate epilepsy and may best be avoided.Ayurverda is an ancient Indian branch of medicine which uses herbalremedies and other therapies.

There are different views concerning the safety of St John’s Wort. Areview of 30 patients at Birmingham University Seizure Clinic has so farshown no evidence of any significant increase in seizures in people tak-ing anti-epileptic medication and St John’s Wort. However, otherresearch suggests that St John’s Wort may affect the blood levels of manytypes of medication including anti-epileptic drugs. The Committee onSafety of Medicines recommends that people taking anti-epileptic drugsdo not take St John’s Wort, and that anyone already taking this herbalremedy see their doctor to discuss the possibility of withdrawing it. It isimportant to speak to the doctor first if considering stopping St John’sWort, as the dose of anti-epileptic medication may need to be altered toprevent side effects.

When considering any area of complementary therapies, it can behelpful for the person to discuss the possible effect this may have on theirseizure control with their GP or epilepsy specialist, and with a qualifiedpractitioner in that particular field of complementary medicine.

Epileptic seizures can have a major impact on every aspect of a person’s life and, insome cases, are potentially life threatening. The highest risk factor in having epilepsycomes from the seizures themselves and the goal of treatment must be to give completeseizure freedom as soon as possible after the onset of seizures. It has been said that oneseizure, once in a while, is one seizure too many.

AEDs – the potential to control seizures

Most people with a diagnosis ofepilepsy will be prescribed anti-epileptic drugs (AEDs). These have thepotential to control seizures inaround 70 per cent of cases. However,starting treatment with an AED is amajor event for a patient and shouldnot be undertaken without a carefulevaluation of all relevant factors anduntil a diagnosis has been establishedbeyond any doubt.

AEDs act by suppressing seizuresand are not curative. Once treatmenthas begun the therapy is likely to belong term – sometimes, depending onthe circumstances, for life. The drugsare powerful and adverse side effectsare common. Possible side effectsinclude drowsiness, weight loss orweight gain, and allergic reactionssuch as skin rash.

More than 20 different AEDs arecurrently licensed throughout theworld. The choice of drug prescribedis influenced by the type of seizure orepileptic syndrome. The selection islargely empirical rather than rational,with the prescriber selecting the drugon the basis of experience of what islikely to work best for the particularseizure type, rather than being able topredict precisely, at the outset, whichdrug will be effective.

Treatment is usually started with asingle drug at a small dose. Dosage isgradually increased, if necessary,until the seizures are brought undercontrol. The key is to start low and goslow. If the first drug is not successful,a second drug may be tried and thefirst may be gradually withdrawn.This process may continue until theright regime is established. Around 47per cent of individuals will respondsuccessfully to the first drug they try,32 per cent of the remainder to thesecond and nine per cent of theremainder to a third.

Some individuals will need to taketwo or more drugs in combination(polytherapy), but the ideal result is toachieve seizure freedom with a singledrug (monotherapy) in the lowestpossible dosage, with the fewest sideeffects. Even within a particularseizure type, one individual willrespond well to a particular drugwhereas another might not; also onepatient may experience adverse sideeffects and another may not.

Twelve new AEDs have been intro-duced in the UK in the last 20 years –three have already been droppedbecause of adverse side effects andeven the best of these new drugs haveonly increased the potential for

seizure freedom by around 10-20 percent. The quest for new drugs is there-fore on-going as is the need toimprove existing drugs for first lineuse (monotherapy), in terms of theirefficacy, safety, pharmacokinetics(metabolism of the drug) and theircost effectiveness.

The National Institute for Healthand Clinical Excellence (NICE) under-took an appraisal of the newer AEDs,reporting on their clinical and costeffectiveness in 2004. They looked atseven drugs that were licensed in theUK between 1989 and 2000. Theynoted that almost all studies compar-ing the older drugs with the newerfound no statistically significant dif-ference in seizure outcomes. Also,while it is generally believed that thenewer AEDs carry fewer side effectsand are better tolerated than the olderdrugs, the appraisal committee deter-mined there was, at the time, insuffi-cient evidence to support this.

Particular consideration was givento the teratogenicity – potential tocause defect in the unborn child – ofAEDs. All the older AEDs have beenassociated with malformations andthe risk is higher among those takingmore than one drug. But the commit-tee found there was insufficient data

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Surgeryavailable to assess the teratogenicityof the newer drugs. The greatest riskcomes with sodium valproate – a fac-tor that is clearly stated in this drug’sSummary of Product Characterisa-tions. Nevertheless the experts advis-ing the appraisal committee advisedthat this drug may still be an appro-priate choice for women of child-bearing age with some types of gener-alised seizures, providing an informedchoice has been made.

These findings, coupled with anassessment of the cost of the drugs(the older drugs being significantlyless costly than the new), led to therecommendation that the newerdrugs should only be tried when peo-ple are not achieving seizure freedomwith the older formulations – or whenthe older drugs are not suitable forparticular reasons. A re-appraisal ofthe epilepsy drugs by NICE is nowdue.

UNSUITABILITY COULDARISE BECAUSE:● There are contraindications;

there is a possibility of interac-tions with other drugs the personis taking, for example oral contraceptives

● It is already known the drug is poorly tolerated by the individual

● The patient is a ‘woman of child-bearing potential’.

Helen Hollis – liberated by surgeryHelen Hollis felt she had been thrown a lifeline whenshe was offered surgery in May 2005. Although shestill experiences the occasional seizure, she feels herlife has been turned around.

She speaks candidly about herepilepsy, and her thoughts prior to,and after surgery.

The mother of two was 19 whenshe had her first tonic clonicseizure at her grandfather’s funer-al. It took another five years for herepilepsy to be diagnosed, duringwhich time Helen felt ‘detachedfrom reality’.

She said: “The diagnosis wasalmost a relief, it gave an explana-tion for my experiences. But inspite of the diagnosis I struggled togain control of my seizures. Themedication made me tired andslowed down my thinking. Myconfidence suffered and there weretimes when my dignity wasbruised.”

Helen regrets that her children,now aged 12 and 9, have neverknown their mum ’without epilep-sy’. She said: “When I had a seriesof seizures it must have affectedthem and their school life. Theydealt with the situation admirablyand I am very proud of them. Itcan’t be easy for them and I regret

things like not being able to run themabout in the car like other mums.”

In a typical day Helen would expe-rience up to eight complex partialseizures. In her words: “These are thetype of seizures where I was aware ofwhat was happening but my con-sciousness was altered. I often felt asthough it might progress to a gener-alised seizure and it was very fright-ening. I did not want to lose con-sciousness and I was anxious aboutwhat my family might have to copewith. At these times my confidencewas rock bottom.

“I would have to go in to town withmum when I was having a bad day.Mum had to watch me like a child. Idared not go anywhere alone as I wasworried about putting down cash orcredit cards and losing them.”

In 2005 Helen was referred to theNational Hospital in London andunderwent tests at the NSE’s Assess-ment Centre in Buckinghamshire tosee if she was a potential candidatefor surgery.

She said: “The tests showed myseizures stemmed from the right hip-

pocampus which meant that surgerywas an option. I was thrilled and excit-ed! I did worry about the risk I was tak-ing but the medical staff were wonder-ful. They explained the risks and bene-fits and were very reassuring.”

A few weeks later, Helen underwentsurgery and her life turned around.That was almost two years ago.Although she still experiences thevery occasional seizure, Helen realises

that surgery has released her inde-pendence. “I looked at an old seizurediary the other day and there were somany seizures recorded in it everyweek. I have to remember just howfrequent and severe they were beforethe operation. I am vastly better off. Ihave had just three seizures since myoperation. My confidence has grown.I have travelled on a train alone. I gointo town alone. Liberation is great!”

Surgery is a treatment option for some people whoseepilepsy is proving resistant to anti-epileptic drugs(AEDs). It will only be considered if the part of thebrain from which the seizures are arising (the focalpoint) is clearly identifiable, is accessible to the sur-geon, and if it can be assessed that removal of that partof the brain will not adversely compromise the patient.

Epilepsy surgery usually involvesthe resection of the damaged orabnormal part of the brain. Thismay be a small amount of tissuesuch as a lesion on the brain, or, inextreme cases when there is a lotof damage to one half of the brain,may involve the removal of thecomplete hemisphere. The otherstrategy for surgical treatment ispalliative, either to interrupt path-ways of seizure spread by discon-necting the area of the brain that iscausing seizures, or vagal nervestimulation.

Success rates are high and someprocedures, such as the removal of

part of the brain known as the hip-pocampus, located in the temporallobe, can result in complete seizurefreedom in more than 70 per cent ofcases. But even in those patients whodo not achieve complete seizure free-dom, the surgery can result in farfewer seizures and a greatly improvedquality of life. In children, surgerycan also lead to improved develop-mental outcomes.

Before the decision to go for sur-gery is finally made, the patient willundergo many tests to pinpoint pre-cisely the epileptogenic tissue andany potential adverse effects, and toestablish the individual’s suitability

for surgery. A multi-disciplinaryapproach should be undertaken inthis pre-surgical assessment, includ-ing the neurologist, neurosurgeon,psychologist, psychiatrist, neuro-physiologist and radiologist.

Tests will include a thoroughreview of the clinical history andseizure pattern, MRI and, in somecases, other imaging techniques suchas PET and SPECT (see article on brainimaging). Scalp electroencephalo-gram (EEG) will be included, as mayEEG-video telemetry in which videorecordings of the patient havingseizures are compared with the EEGtraces of electrical activity within thebrain to give a clearer correlationbetween the way the seizures are pre-senting and the electrical activity thatis taking place.

In some cases, a decision will bemade to undertake intracranial EEG, asurgical procedure using subduraland depth electrodes.

Psychometric assessments will alsobe carried out to establish that cogni-tive skills will not be impaired andpsychiatric assessments will also beundertaken. Equally, it is essentialthat the patient, families and carers,are fully informed and counselledbefore any decision to go ahead withsurgery is taken.

Currently around three per cent ofpeople with intractable epilepsy willbe considered eligible for surgery,totalling around 500 cases a year.However, it is thought that there arebetween 750 to 1,500 people eachyear in the UK who could have epilep-sy surgery. This is perhaps becausemany patients who could be eligiblemay not be being referred to specialistcentres and therefore remain under-investigated.

With advances in brain imagingtechniques, it is hoped that more peo-ple can be identified who may be ableto have this form of surgery.

“Currently aroundthree per cent of peoplewith intractable epilepsywill be considered eligible

for surgery, totallingaround 500 cases a

year““AEDs act by

suppressing seizures andare not curative “

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Vagus nerve stimulationVagus nerve stimulation(VNS) involves mild elec-trical stimulation of the leftvagus nerve as it passesthrough the neck. It is usedto treat epilepsy as well asdepression.

The vagus nerve is a major communi-cation link between the body and thebrain. VNS Therapy works by sendingmild electrical signals to the brain viathe nerve, disrupting the abnormalelectrical activity that can causeseizures.

It may reduce the number andintensity of seizures in some people,but it is unlikely to completely stopthe seizures happening so anti-epileptic drugs will usually still beprescribed. VNS Therapy may alsoreduce the length of the recovery timeafter seizures, and some people findthat it has a positive effect on theirquality of life. It has been suggestedthat VNS Therapy enhances themood, memory and alertness for somepeople. Also, after findings showingthat it has a positive effect on individ-uals suffering from depression, VNSis also indicated for the treatment ofchronic or recurrent depression.

In epilepsy treatment, a stimulator,a little like a heart pacemaker, isimplanted under the skin in the per-son’s upper chest. Electrodes are con-nected to the stimulator at one endand are coiled around the left vagusnerve in the neck at the other end. Thestimulator is programmed to transmit

regular electrical signals to the nerve,usually giving 30 seconds of stimula-tion every five minutes during theday and night. These signals travel upinto the brain, spreading out widelythrough the nerve fibres.

The signal can be boosted by pass-ing a magnet over the stimulator. Thiscan be helpful for people who have anaura or a warning that a seizure isabout to happen as it may prevent theaura from developing into anothertype of seizure, or may reduce thelength of the subsequent seizure orthe recovery time. If the person has nowarning before their seizures, some-one else could use the magnet forthem when a seizure happens, poten-tially reducing the seizure length orthe recovery time. The magnet is usu-ally worn on the wrist like a watch.

It is not clear who will respond bestto VNS therapy and it is usually con-sidered if a number of anti-epileptic

Memory lossIt is not unusual for people whohave epilepsy to have difficultieswith their memory.

Any type of epileptic seizure hasthe potential to affect a person’smemory – and the more seizures anindividual has the more frequentlymemory difficulties may occur.

The location of the seizures with-in the brain may influence the typeof memory loss a person mayencounter. For example, seizures inthe frontal lobe of the brain maygive rise to problems in remember-ing what to do in the future as thispart of the brain is responsible forprospective memory. Seizures aris-ing in the temporal lobe may pres-ent difficulties in rememberingthings, as this lobe is responsible fornew learning. And people whoseseizures start in the left side of thebrain may have problems remem-bering words and get stuck in mid-conversation, because the left sideof the brain is usually the side thatcontrols language and words.

Some people experience post-ictal confusion, ie in the periodimmediately after a seizure, andhave difficulty recalling any sortof information. This will usuallygo away once the person has had achance to recover from the seizure,

drugs have failed to fully controlseizures. It may also be used for peoplewho are not suitable for, or who donot want to have brain surgery.

Side effects can include discomfortin the throat, a cough, difficulty swal-lowing and hoarseness of the voice,though these usually only happenwhen the vagus nerve is being stimu-lated. These effects may reduce withtime or the person may get used tothem.

The effects of VNS improve overtime and full effect is usually seen12–18 months after the implant. Ifafter 18–24 months there is noimprovement in seizures, the personmay choose to have the stimulatorswitched off or removed.

though it will vary from one per-son to another and some peoplemay find their memory is perma-nently affected after a seizure.

The side effects of taking anti-epileptic drugs (AEDs), such asdrowsiness or attention problems,can have an effect on short-termmemory and may make it difficultto learn and store new informa-tion, although when AEDs bringseizures under control this canhelp to improve memory. Thisimprovement is probably not duedirectly to the AEDs, but is morelikely due to the cessation of theseizures.

Surgery may have an impact ona person’s memory, if the part ofthe brain that has been operated onis important in memory function –but for some people a reduction intheir memory may be a price worthpaying if the surgery successfullystops or reduces their seizures.

There are several techniques andaide-memoires. A psychologist canadvise on ways to manage memorydifficulties, and can also undertakea memory assessment to determinethe extent and impact of the diffi-culties. Referrals for a memoryassessment are usually made from aperson’s GP or from their specialist.

VNS Therapy

NICE Clinical guidelines state that VNS Therapy is indicated for use as anadjuntive therapy in reducing the frequency of seizures in patients whoseepileptic disorder is dominated by partial seizures (with or without secondary generalisation) or generalised seizures.

To date approximately 35,000 patients worldwide have been implantedwith the VNS Therapy System and the UK figure amounts to 1,800 patients.

The American Academy of Neurology has concluded that: “Sufficient evi-dence exists to rank VNS Therapy for epilepsy as effective and safe based ona preponderance of Class 1 evidence” of intractable partial epilepsy.

In addition to having a positive impact on seizure control, VNS Therapy can enhance alertness, mood, memory retention and reduce daytimesleepiness.

A psychologist can advise on ways to man-age memory difficulties and can undertake amemory assessment to determine the extentand impact of the difficulties.

®

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Frustratingly, health strategists large-ly ignored these reports until the pub-lication of a Department of Healthfunded report on epilepsy relateddeaths. It is estimated that perhaps athousand people a year die of epilepsyrelated causes of which half are sud-den and unexpected2. This reportpublished in 2002 showed that abouthalf the number of sudden unexpect-ed deaths might have been avoided ifepilepsy care was improved.

The Chief Medical Officer for Eng-land promised an action plan3 andthis was launched in 2003. This sug-gested several initiatives to improvecare.

The Action plan was broadly wel-comed by the epilepsy charities, buttheir fear of effective improvement incare being restricted by lack of ring-fenced funding and poorly definedobjectives was indeed proved correctwith the restricted impact of the NSFfor long term conditions.4

However, four developments havehad a positive effect for people withepilepsy. The first was a professional-ly driven independent non-govern-ment initiative and the other threedriven by the Department of Health.

The first was the development andgrowth of Epilepsy Specialist Nurses.This was an independent initiativeand had nothing to do with govern-ment. It came about as an improve-ment identified and driven by doctorsand nurses working in the NHS. Thisservice gap was initially identified by

GovernmentInitiativesOver the last twenty years, a number of governmentreports highlighted the poor quality of epilepsy care inthe UK and a clinical standards audit (CSAG)1 publishedin 2000 even suggested ways of changing the way thatepilepsy care was provided.

a GP working in Doncaster whosedaughter had epilepsy. His groupworked with the voluntary sector andthe Pharma industry to address thesuboptimal care and the paucity ofspecialists by becoming the first GPwith a special interest in epilepsy andtraining 2 specialist nurses to workalongside him and develop a satelliteservice under the supervision of aneurologist in Sheffield.

This was found to be clinically andcost effective and so the charityEpilepsy Action funded an increasingnumber of ‘sapphire nurses’ to com-memorate its fortieth birthday. Thenumber of specialist nurses grew toabout a thousand but are now beingcut back because of the financial diffi-culties of the ‘modernised NHS’.

The second was the publication ofguidelines (by SIGN in Scotland andNICE in England and Wales). Bothguidelines are based on best clinicalevidence but the NICE document alsoconsidered cost effective data. Theseguidelines were developed to set outhow epilepsy could be better man-aged. They are slowly being adopted.

The third was the inclusion ofepilepsy in the new GP contract aspart of the Qualities and OutcomesFramework (QOF) and set out mini-mum ‘targets’ for epilepsy care ingeneral practice. This QOF frameworkhas some drawbacks but at leastbrings epilepsy into the NHS radar.People with epilepsy are now invited

for an annual review of their condi-tion. There are toolkits and guidelinesto assist clinicians in providing bettercare and these can be interested pro-fessionals in both primary and sec-ondary care.

The final service development is thepost of ‘GP with a Special Interest’ inepilepsy (GPSIE). Some PCTs up anddown the country have embraced thisidea and identified and trained GPs tospend some of their time workingwith the Primary Care Trust (PCT) tosupplement specialist care. Arrange-ments about how to structure a GPSIEservice are worked out locally. Ofcourse not all PCTs feel the need forGPSIE and so if anyone with epilepsyfeels their condition is not well man-aged they should put pressure on theirPCT to consider improving serviceswith either specialist GPs or nurses.This service can support and informpatents, families, friends and carersand reduces the stigma and impact ofthe condition. Regrettably servicedevelopment is currently underfinancial pressure in many areas.

(1) Clinical Standards AdvisoryGroup. Services for Patients withEpilepsy. London: DoH, 2000.(2) Hanna NJ, Black M, Sander JW etal. National Sentinel Clinical Auditof Epilepsy-Related Death: Epilepsy– death in the shadows. London: TheStationery Office, 2002.(3) Department of Health. The Annu-al Report of the Chief Medical Offi-cer of the Department of Health2001. London: DoH, 2001.(4) National Service Framework forLong Term Conditions. Departmentof Health 2003SIGN. The Scottish IntercollegiateGuidelines Network in EdinburghNICE. The National Institute forHealth and Clinical Excellence inLondon

Economic burdenIt is estimated that there are around 456,000 peoplewith epilepsy in the UK – this is the equivalent of oneperson in 131. Of these, 42,000 (one in 279) are chil-dren under 16, and one in 91 are over 65 years of age.

Approximately 131,000 are women of ‘child-bearing age’, ie between 12 and50. Around one in five people with epilepsy will have a degree of learningdisability or impairment. The number of new cases diagnosed every day inthe UK is around 75.

Misdiagnosis rates, where a diagnosis of epilepsy is wrongly made, areestimated at between 20 and 31 per cent. At an assumed midway rate of 23per cent misdiagnosis, this equate to 105,000 people having a diagnosis andreceiving anti-epileptic drugs even though they do not have epilepsy.

The Clinical Guidelines for the management of the epilepsy, published in2004 by the National Institute for Health and Clinical Excellence (NICE)reported that the medical cost of treating people with epilepsy in Englandalone was over £23 million, rising to almost £28 million across the whole ofthe UK. The non medical costs are significantly higher at more than £111million in England (over £132 million across the UK), bringing the combinedcosts across the UK to in excess of £160 million. In addition it is estimatedthat 58,900 people with epilepsy are claiming Disability Living Allowance ata cost of £184 million per year.

It will cost £15 billion to treat the total current UK population of childrenwith epilepsy during their lifetimes. This figure does not include social serv-ices and educational costs. This is equivalent to £0.5 billion per annum totreat children with epilepsy.

Despite this economic burden, epilepsy attracts very little governmentfunding. In 2002/03, only one per cent (£3.78 million) of the grant from theUK government’s medical research council went to fund epilepsy researchand only 1.4 per cent of the total overall grants given by UK neurologicalfunding bodies went to fund epilepsy research.

All the information provided in this article is taken from the Joint EpilepsyCouncil’s report Epilepsy Prevalence, Incidence and Other Statistics, publishedin 2005. The Joint Epilepsy Council is an umbrella body representing morethan 20 epilepsy organisations throughout the UK and the Republic of Ireland.

BY DR W HENRY SMITHSON, GP ESCRICK NORTH YORKSHIRE,

CHAIR EPILEPSIES GUIDELINES GROUP AT NICE, HON SEN

CLINICAL LECTURER HULL YORK MEDICAL SCHOOL

Please join us at the upcoming AED IX conference March 21-23, 2007 in Sunny Isles,Florida or the 2nd Eilat International Educational Course September 2-9, 2007in Eilat, Israel!

Find out more about our grants, programs, and conferences at epilepsy.com and epilepsytdp.org

Advancing New Therapies For

People Living With Epilepsy

AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES18

Who looks after your epilepsy?The best answer is that you do! Individuals living with long term conditions have tomake personal decisions about their health and their treatment and how to managethat condition. Doctors, nurses and other health professionals who help in manage-ment must remember that epilepsy is a poorly understood label that encompasses awide range of potential seizure activity and brings with it a feeling of stigma, of loss ofcontrol, restrictions on driving, leisure, education and employment.

Epilepsy care can assist in this self-management by providing a timelyand accurate diagnosis, investiga-tions tailored to the individual, treat-ments specific to the type of epilepsy,information about the condition, reg-ular monitoring and rapid access tospecialist services if seizures changeor become more frequent.

The increasingly complex healthservice now offers a number of differ-ent ways of managing epilepsy andthe ‘care pathway’ will depend on theage of the patient, on the type andseverity of the epilepsy and on puregood luck. The key to good care is byagreeing a ‘management plan’ takinginto consideration the views of theindividual, the specialist and the gen-eral practitioner. For children and forpeople with learning differences thefamily or the carers’ views are alsoimportant.

ChildrenChildren with epilepsy will meet theirGP, their local specialist who shouldhave an interest and expertise in thecondition, an epilepsy specialist nurse

and may be referred to a paediatricneurologist if the epilepsy is of a com-plex type or is difficult to control.

The Paediatrician: is a specialist inchildren’s illnesses and has experi-ence in treating most of the childhoodepilepsies. They usually work from

hospitals but some paediatricianswork in the community. The main roleof a paediatrician is to make the diag-nosis and start treatment that is tai-lored to the type of epilepsy. They willalso help the patient decide on longterm treatment and refer to a neurolo-

gist if the sort of epilepsy is complexor isn’t responding to regular treat-ments. They take on most of the careof children with epilepsy and oftenhave the assistance of a specialistnurse.

The Epilepsy Specialist Nurse: is anurse with training and experience inlooking after either children or adultswith epilepsy and provides informa-tion and support to individuals andfamilies and sometimes acts as a linkbetween hospital and GP services.They monitor the effects of treatmentand may recommend a change indose or type of medication and referyou back to the consultant if there areproblems. They also inform organisa-tions and members of the publicabout epilepsy and work with patientgroups. The number of ESNs grewfrom a handful fifteen years ago toabout a thousand. The developmentof the specialist nurse has trans-formed epilepsy care in the UK but

regrettably some of these posts arenow under threat because of thefinancial difficulties in the NHS.

The Paediatric Neurologist: is aconsultant paediatrician who spe-cialises almost exclusively in disor-ders of the nervous system. There areonly a handful of paediatric neurolo-gists in the UK and they are generallybased in a university hospital. Theyact as a second opinion for generalpaediatricians and have specialknowledge of rare epilepsy syn-dromes and other treatments whenregular medicines fail.

AdultsAdults with epilepsy may see a rangeof professionals in primary and sec-ondary care but more routine moni-toring now takes place in generalpractice. Again, care must be tailoredto the individual’s needs and the typeand severity of their epilepsy.

The General Practitioner: acts as aco-ordinator and guide to ensure bestreferral when epilepsy is suspected,when changes occur in seizure char-acteristics and for monitoring theestablished condition. Your GP prac-tice is now able to offer an annualreview of your condition by using theskills and strengths of British familymedicine in knowing patients andbeing a source of long term continu-ing care.

The Medical Specialist: is the doc-tor with an interest and expertise inthe condition and is usually trained inneurology but psychiatrists, generalphysicians and elderly medicine spe-cialists may all have the necessaryexperience to run a specialist epilepsyservice. Your GP will know the bestperson in your part of the country.

The Epilepsy Specialist Nurse: hasthe same role as their paediatric coun-terparts.

The GP with a Special Interest inEpilepsy: some PCTs have appointedand trained a few GPs to have a moreextensive knowledge of epilepsy. ThisGPSI service is yet to be standardisedbut these specialists may well workwith neurologists to diagnose andtreat the more complex epilepsies. Ofcourse, you may find that your ownpractice has a GP or nurse with a par-ticular interest in the condition.

Quite an array of talent! But the cru-cial thing is to find a professional whounderstands you and your conditionso you can all work together to man-age it better.

“The crucial thing is to find a professional who understands you and

your condition“

Epilepsy Action campaigns tosave epilepsy specialist nurses

Epilepsy Action is currently cam-paigning to save the jobs of the manyepilepsy specialist nurses who havebeen threatened with redundancy,reduced working hours, or spendingless time on specialist epilepsy dutiesdue to cuts in NHS funding.

The All-Party Parliamentary Groupon Epilepsy (APPG) met on 4 Decem-ber 2006 to discuss the threats toepilepsy specialist nurses and to spe-cialist nurses in other neurologicalconditions. Since then, John BattleMP has tabled an Early Day Motion

(no. 541) in Parliament to gather sig-natures from MPs to show their sup-port for a particular issue.

Epilepsy Action has written to itsmembers and local MPs in the areaswhere there is a threat to epilepsy spe-cialist nurses asking them to put pres-sure on local health trusts to reviewthe proposed changes. The media hasalso been used to generate publicityabout posts that are under threat, anda number of MPs have asked ques-

tions in Parliament about the situa-tion.

The response to the campaign fromEpilepsy Action members and MPshas been fantastic. The post of anepilepsy specialist nurse in Ipswichhas been saved through media workand the publicity that was generated.The post of an epilepsy specialistnurse in Leeds is no longer at risk.

However, the jobs of epilepsy spe-cialist nurses are still at risk in many

other areas of the UK. An epilepsyspecialist nurse who left their post inNottingham will not be replaced;resulting in the service being reducedby 25%. Epilepsy Action is calling onNottingham University Hospital’sNHS Trust to review its decision to cutepilepsy services in Nottingham andthe surrounding areas.

BY: DR W H SMITHSON GP ESCRICK NORTH YORKSHIRE, CHAIR EPILEPSIES

GUIDELINES DEVELOPMENT GROUP NICE, PRIMARY CARE LEAD AUDIT

AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES 19

Epilepsy resources

Would you like there tobe a cure for epilepsy?You are not alone.

“I can't think of anyone betterto support than the EpilepsyResearch Foundation becausemore research into epilepsycan only be a good thing.”

Damian Cronshaw

• Epilepsy affects over 450,000people in the UK alone.

• Every day 75 people are diagnosedwith the condition in the UK.

Even with control of seizures, quality of life for people with epilepsy can be poor.However, new research offers the very realpossibility of developing therapies thatcould transform the lives of those affected.

The Epilepsy Research Foundation is anational charity at the forefront of theseresearch developments. We identify andfund promising research at its earliest stagesand our track record is excellent.

• Over the past five years everypound of Foundation funding hasled to a further two pounds beingallocated to epilepsy research byorganisations such as the MedicalResearch Council.

The Foundation is also very efficiently run.

• Last year 87 pence in every poundwas spent on research andassociated charitable activity.

Great progress in understanding the causesof epilepsy has been made in recent years,but there is still much to be done.

Registered Charity No. 1100394

To make a donationtoday visit:www.erf.org.uk/givenow.htmcall 0208 995 4781or send a cheque madepayable to EpilepsyResearch Foundation to:

Epilepsy Research FoundationPO Box 3004, London, W4 4XT

JEC Members

• Joint Epilepsy Councilwww.jecuk.org 01943 871852

• National Society for Epilepsywww.epilepsynse.org.uk01494 601 300helpline 01494 601400

• Brainwave: The Irish Epilepsy Association

www.epilepsy.ie+353 1455 7500

• Enlightenwww.enlighten.org.uk0131 226 5458

• David Lewis Centrewww.davidlewis.org.uk01565 640000

• Epilepsy Actionwww.epilepsy.org.uk0113 210 8800helpline 0808 800 5050

• Epilepsy Bereavedwww.sudep.org01235 772850

• Epilepsy Connectionswww.epilepsyconnections.org.uk0141 248 4125

• Epilepsy Research Foundationwww.erf.org.uk020 8995 4781

• Epilepsy Scotlandwww.epilepsyscotland.org.uk0141 427 4911helpline 0808 800 2200

• Epilepsy Specialist Nurses Associationwww.esna-online.org.uk0114 2712186

• Epilepsy Waleswww.epilepsy-wales.co.ukHelpline 08457 413774

• Epilepsy West Lothianwww.epilepsywestlothian.co.uk01506 464446

• Fund for Epilepsywww.epilepsyfund.org.uk020 7592 3270

• Gravesend Epilepsy Network01474 351 673

• Gwent Epilepsy Group01495 763 131

• International League Against Epilep-sy (ILAE)www.ilae-uk.org.uk

• Meath EPILEPSY Trustwww.meath.org.uk01483 415 095

• Mersey Region Epilepsy Associationwww.epilepsymersey.org.uk0151 298 2666

• National Centre for Young Peoplewith Epilepsy (NCYPE)

www.ncype.org.uk01342 832 243

• Organisation for Anti-ConvulsantSyndrome

www.oacs-uk.co.uk01253 790022

• Quarrierswww.quarriers.org.uk01505 612224

• St Elizabeth’s Centrewww.stelizabeths.org.uk01279 843 451

Other useful contacts

Brain Injury Rehabilitation Trustwww.birt.co.uk01924 896100

Epilepsy imaging Groupwww.ion.ucl.ac.uk020 73918905

FABLE (VNS)www.fable.org.ukhelpline 0800 521 629

Global epilepsy campaignwww.who.int/mental_health/neurology

Headway: the brain injury associationwww.headway.org.ukhelpline 0808 800 2244

HemiHelp: Info & Support for Children with Hemiplegiawww.hemihelp.org.uk helpline 0845 123 2372

Matthews Friends (the ketogenic diet)www.matthewsfriends.org0788 4054811

The Muir Maxwell Trustwww.muirmaxwelltrust.com0131 454 0606

Neurosupportwww.neurosupport.org.uk0151 298 2999

Support Dogswww.support-dogs.org.uk0870 609 3476

UK Epilepsy & Pregnancy Registerwww.epilepsyandpregnancy.co.uk

Voluntary Organisations DisabilityGroupwww.vodg.org.uk07857 886 134

The Joint Epilepsy Council is the representative body ofthe UK’s main epilepsy organisations.

THE EPILEPSY INFORMATION NETWORK

The EIN is an innovative service developed by the National Society for Epilepsy (NSE) in response to the 1999 Clin-ical Standards Advisory Group report to Government which highlighted the need for quality information to beavailable at a local level to support people with epilepsy. The importance of information provision for all peoplewith epilepsy was further highlighted in the NICE clinical guidelines, 2004.

The EIN primarily provides epilepsy information services in healthcare settings, working alongside healthcareprofessionals. The services are manned by trained volunteers, who are supported by regional managers.

Today there are more than 100 such services in hospitals and clinics throughout England with more in develop-ment.

The service is regularly evaluated by NSE and the neurologists and specialists it works with. In the most recentsurvey, all who responded said the EIN complemented the services they already offered and 95 per cent said theirpatients benefited from speaking to an EIN volunteer during their hospital visit.

The EIN is showcased in a Good Practice guidance document supporting the Government’s National ServiceFramework for long term conditions, as a model of good practice for its innovative services.

The EIN has latterly expanded to schools with a programme to make pupils more aware about epilepsy and how torespond to someone having a seizure. Developed by NSE and delivered by EIN volunteers, the Schools Awareness Pro-gramme ties in with the national curriculum at Key Stage three.

For more information, contact the National Society for Epilepsy