May 2008 - Epilepsy Australia

WELCOMEThe exciting development in this issue is the formationof the Parliamentary Friends of Epilepsy Group, to beconvened by Jill Hall MHR. The Group will be launched inCanberra on the 28th May.The Joint Epilepsy Council of Australia (JECA)lead by Jacinta Cummins and Russell Pollard spentmany months lobbying Members of Parliament togain support for JECA’s submission to governmenttitled: A National Strategy for Epilepsy. Coming from abackground in disability and rehabilitation, Jill Hall, theMember for Shortland in NSW, knew very well the manydisadvantages people with epilepsy experience, andwith a record for advocating for fairness and justice, putJECA’s concerns on notice to the House.With bipartisan support, the debate took place on the17th March, with each speaker commending Jill’s motionto the House. Extracts from their speeches can be readon pages 6 and 7.Seizures force many to turn their lives around andrechart their future course. Martin Raffaele had to do justthat. In redefining himself, epilepsy is now the focus of hislife as he seeks way to help others.A theme running through this issue is about ‘makinga difference’ and whether it occurs in the halls of poweror in those communities living in rural or remote areas ofAustralia, whether it is working in research laboratoriesor as a volunteer at outdoor adventure camps, orinvestigating the social impact epilepsy has on youngpeople, you will read about those who believe making adifference is possible.CONTENTS3Special featureJill Hall MHRadvocates for fairnessand justice for people withepilepsy8 Allison Clarkeepilepsy & young people8Michael KendrickService models: doesone size fit all?14 Martin Raffaelestepping fromdarkness into lightEditorDenise ChapmanContributing EditorsRussell Pollard, Dr Frank Vajda,Fiona Tito, Robert Cole.ContributorsJohn Berrill, Jim Chambliss,Allison Clarke, Mark Francis,Michael Kendrick, Dr StevenPetrou, Jaya Pinikahana, MartinRaffaele, Lesley Ridgeway, ClareThorne, Christine Walker,Prof John Willoughby.PhotographyDreamstime.comPrint Pegasus Print GroupThe Epilepsy Report is publishedby Epilepsy Australia Ltd818 Burke RoadCamberwell VIC 3124 AustraliaTel: 03 9805 9111epilepsy@epilepsyaustralia.netwww.epilepsyaustralia.netViews expressed and informationincluded herein do not necessarilyreflect official policies of EpilepsyAustralia. Articles coveringmedical aspects are not intendedto replace competent medical, orother health professional advice.All content is copyright and maynot be reproduced without priorpermission. Contributions arewelcome. The Editor reserves theright to edit content for reasons ofspace or clarity.Epilepsy Australia Affiliates:Epilepsy ACTEpilepsy Queensland IncEpilepsy Association of SA/NTEpilepsy Association of TasmaniaEpilepsy Foundation of VictoriaEpilepsy Association of WA1300 852 853EditorNational Epilepsy Helpline11 Jaya PinikahanaChristine Walkerepilepsy & social stigmaPLUS17Sparks of Creativityepilepsy: a windowto experience &creativityChildhood epilepsy research 10Epilepsy research at Flinders 13Research Participant Register 16ACT fundraising kicks goal 18Epilepsy SA/NT on the move 19E-Camping in Tassie 22Confessions of a volunteer 24Remote & rural communities 25New partnership: miVitals 26An interview with Little Poss 27Power of Attorney: future planning 28Letters to the editor 30face2face with Jacinta Cummins 312 THE EPILEPSY REPORT MAY 2008

World leading brainexpert to deliver freepublic lectureSPLIT - BRAIN RESEARCHEXPLAINEDChildhood epilepsyresearch offersnew hope forseizure controlAt the Howard Florey Institute’s 12th Kenneth MyerLecture you’ll find out about one of the biggestdiscoveries in neuroscience from a world leader inbrain research, Prof Michael Gazzaniga.Prof Gazzaniga, Director of the SAGE Center forthe Study of the Mind, University of California, isinternationally recognised for his ground-breakingstudies on the split-brain: one of the most fascinatingsyndromes in neurology.A split-brain occurs when the corpus callosumconnecting the brain’s two hemispheres is severed tosome degree. The surgical operation to produce thiscondition is rarely performed, and only as a last resortin otherwise intractable epilepsy. After the operation,split-brain patients seem to have two minds. Whatthe left hemisphere learns and thinks is completelyunknown to the right hemisphere, and vice versa.Gazzaniga and his colleagues’ split-brain studieshave shed light on language, mechanisms ofperception and attention, brain organisation, and thepotential for false memories. Perhaps most intriguinghave been their revelations on consciousness andevolution.Prof Gazzaniga’s long and distinguished careerincludes many books accessible to a lay audience,and his participation in the TV show The Brain andThe Mind has helped make information about brainfunction accessible to the public.Date: Thursday, 12 June 2008Time: 6:15pm start for 6:30pmVenue: Dallas Brooks CentreEast MelbourneRegistrations are essential, as tickets will be issued.Registration options:Online: www.florey.edu.au/lecture/Email: rsvp@warnemarketing.com.auPhone: (03) 8610 6744Howard Florey InstituteScientists still do not know whatcauses epileptic seizures, butresearchers from Melbourne’s HowardFlorey Institute are one step closer tosolving this puzzle with the help of theirnewly developed genetically modifiedepileptic mouse.This is the first human geneticmutation based mouse model in theworld that mimics childhood absenceepilepsy (CAE). The mouse is nowhelping Dr Steven Petrou and his teamto understand the genesis of epilepsy,which will aid in the development ofbetter anti-seizure drugs.CAE involves brief staring spells,during which the child is not aware orresponsive. These episodes can occurone to 50 times per day and the age ofonset is usually three to 10 years.In about 30% of people, anti-epilepticdrugs do not adequately control theirseizures and many drugs have sideeffectssuch as rashes, lethargy andmemory problems.Dr Petrou said new treatmentstrategies were urgently needed to createbeneficial drugs without side-effects.“The problem with current drugs isthat they treat the symptoms, not the rootcause,” Dr Petrou said.“To develop new treatment strategieswe need to understand the genesis ofepilepsy, and this mouse model shouldprovide a window into that fundamentalprocess.“We all know seizures occur ifthe brain’s cortex goes haywire, butsomething is happening prior to thatevent to cause neurons to misfire, and wewant to understand that initial event.“Because mice grow so quickly,changes in the brain can be readily seenand measured.“In a week the mouse can go fromno seizures to seizures, so we caninvestigate what changes are occurringin that period and what is happening inthe critical time window that leads toseizures.“Initial findings suggest there is adefect in the brain’s cortex which maybe related to the beginning of seizuresin CAE but we are delving into deeperbrain structures as well,” Dr Petrou said.The inherited human gene mutationthat causes CAE was first detected byDr Petrou’s collaborator, Prof SamuelBerkovic from Austin Health. Throughgenetic manipulation, Dr Petrou hasintroduced this human mutation into themouse DNA, allowing the researchersto study a mouse version of the humancondition.The mutation itself is rare in humansbut it causes CAE, which is one of themore common forms of epilepsy.Dr Petrou said that modelling geneticepilepsies in mice will allow researchersto understand epilepsy from themolecular level all the way through tophysical behaviour.“Creating this link in the human brainis impossible due to the highly invasivemethodology required, so mouse modelsprovide us with a unique opportunityto discover mechanisms of seizuregenesis,” Dr Petrou added.Dr Steven Petrou is a Senior Research Fellow at theHoward Florey Institute and University of Melbourne,and an Honorary Research Fellow at the NeurosciencesVictoria and Brain Research Institute (Austin Health).Dr Petrou’s research was published by the prestigiousProceedings of the National Academy of Sciences.The Howard Florey is collaborating with Australianbiotechnology company, Bionomics, to leverage thismodel for the advancement of anti-epilepsy drugdiscovery.10 THE EPILEPSY REPORT MAY 2008

Epilepsy andsocial stigma:myths and realitiesEpilepsy is not a purely ‘neurological phenomenon’ and itrequires a juxtaposition of both the neurological and sociologicalcomponents to elucidate the ‘unexplored’ dimensions ofthis disorder. Although clinical, neurological, biological,psychiatric and even therapeutic aspects of epilepsy have beenfairly consistently reviewed, relatively little is known aboutpsychosocial aspects of this condition.From ancient to modern times,epilepsy has carried with it an‘undesirable’ amount of social stigmathat affects people with epilepsy invarying degrees in diverse culturalsettings. The father of sociologyof stigma; Goffman (1969) definesstigma as ‘an undesired difference’.He argues that the stigmatised areseen by others as ‘not quite humans’who are legitimate targets fordiscrimination. Link and Phelan (2001)define stigma contextually; that stigmaexists ‘when elements of labelling,stereotyping, separation, status loss,and discrimination occur together ina power situation that allows them’.Even in industrial nations like America,epilepsy carries a stigma that datesback to ancient civilisations. Someargue that stigma related to epilepsy isworse than the stigma of cancer or HIV/AIDS. Misunderstanding, fear, andanxiety resulting from stigma hamperscare and public recognition and resultsin social and even legal discriminationagainst those living with epilepsy. Ina WHO document ‘Epilepsy: socialconsequences and economic aspects’,some misunderstandings about epilepsyfrom around the world have beensummarised;• In Cameroon, it is believed thatpeople with epilepsy are inhabitedby the devil;• In China, epilepsy diminishes theprospects of marriage, especiallyfor women.• In some parts of India, attempts aremade to exorcise evil spirits frompeople with epilepsy by tying themto trees, bearing them, and cutting aportion of hair from their head;• In Indonesia, epilepsy is oftenconsidered as punishment fromunknown dark forces;• In Liberia, the cause of epilepsy isperceived as related to witchcraft orevil spirits;• In Nepal, epilepsy is associatedwith weakness, possession by anevil spirit;• In Swaziland, many traditionalhealers mention sorcery as thecause of epilepsy;• In Uganda, epilepsy is thought tobe contagious and so people withepilepsy are not allowed to join thecommunal food pot.Research shows that people withepilepsy in developing countriesparticularly in Africa, suffersubstantially from stigma and socialexclusion and they are more likely to beunemployed, get less educated and getless married.Fernandes et al (2007) in a recentstudy in Brazil found that the magnitudeof stigma is different within segments ofthe local society, highlighting that socioculturalfactors such as gender, religion,level of education may be importantpredictors of stigma. In a Korean studyby Lee et al, (2005) involving 400 adultswith epilepsy indicated that 31% ofthem felt stigmatised by their condition.Jaya Pinikahana PhDPrincipal Social ResearcherEpilepsy Foundation of VictoriaChristine Walker PhDChief Executive Officer,Chronic Illness AllianceDilorio et al (2003) reported that peoplereporting higher levels of stigma werethose who had their first seizure beforethe age of 50. In an Estonian study,Ratsepp and his colleagues (2000) foundthat overall 55% of people with epilepsybelieved that they had been treatedunfairly at work or when trying to get ajob, 51% of respondents felt stigmatisedby epilepsy, and 14% of them highly so.Baker et al (2000) in a review on ‘stigmaof epilepsy; a European perspective’involving more than 5000 people withepilepsy in 15 countries in Europefound that 51% of respondents reportedfeeling stigmatised, with 18% reportinghighly stigmatised. Paradoxically, oneBritish study found no evidence thatstigma affects the lives of those whoseepilepsy was not complicated by otherpathologies (Britten et al, 1984).Research shows that stigma hasa negative affect on the quality ofTHE EPILEPSY REPORT MAY 200811

life (QOL) of people with epilepsy(Jacoby, et al, 1996; Baker et al, 1997).Hermann et al (1990) found that stigmais one of seven key predictor variableswhen studying significant causes andprocesses in the development of mentalillness (psychopathology). Perceivedstigma was ranked fourth in importancein predicting quality of life, afterpsychological stress, loneliness andadjustment (Surmaijer et al, (2001).Stigma is also associated with reducedself-esteem, anxiety, depression, andhelplessness (Jacoby, 1994; Dilorio et al,2003; Westbrook et al, 1992)Educating people on the true causesof epilepsy is the key to address theissue of stigma associated with thisdisorder. Knowledge gaps have thepotential for discriminatory behaviour.Misunderstandings coupled with ancientmythologies surrounding epilepsy hauntmany parts of resource poor countries.The social value of people with epilepsyhas been so devalued for so long. Weneed to cut across the message thatepilepsy is not a disease and it is adisorder that is not contagious. Peoplewith epilepsy can lead normal livesand work regular jobs. A crucial partof getting rid of epilepsy stigma is toraise public and professional awarenesstogether with changes in legislationwhich reinforces fear and discrimination(WHO, 2001). The role of the mediain this noble exercise is paramount,perhaps in collaboration with healthprofessionals, especially GPs andneurologists.ReferencesEpilepsy social research in Australiais ‘uncharted waters’ where noinvestigation into knowledge of, andattitudes towards, epilepsy or epilepsystigma in either the general public orspecific significant populations such asteachers, nurses or employers has beencarried out. As Brown (2006) indicatesAustralian social research into epilepsyhas been a ‘shadow-dweller’ for toolong. We are lagging behind even somedeveloping countries such as India,Zambia, Kenya, Vietnam or Brazil interms of social research into epilepsy.Research program at theEpilepsy Foundation ofVictoria (EFV)The EFV has already initiated a majorresearch program into Australian’sknowledge of and attitudes towardsepilepsy together with many othersocial and applied research projects.To begin with, the EFV will adopt a‘micro’ research approach focussing on‘small sample studies’ in Victoria beforeadopting a ‘macro’ research approachfocusing on wider national surveys infuture.The EFV’s ResearchParticipant Register (RPR)The RPR founded by Dr Kevin Brown,reached the 548 mark by the end ofMarch 2008. This is the only register ofits type in Australia and we have not sofar learned of another anywhere else inthe world. We are very hopeful that wewill be able to achieve our target of 1000before the end of 2008. The RPR is avoluntary cohort of people with epilepsyand their carers who have expressedtheir willingness to participate in socialresearch into epilepsy and it will providethe basis for a series of psychosocialresearch projects into epilepsy andseizure in future.The EFV has already completed abaseline survey on ‘Characteristicsof the Research Register ParticipantsLiving with Epilepsy in Victoria. InApril 2007, we sent out a short survey toeveryone who had registered (N=520),just to capture some basic details aboutyour lives. This data will be our baselineinformation giving us a ‘snapshot’ ofwhat life with epilepsy is like in 2007.Three hundred and thirty eight (N=338)surveys have been returned, a responserate of 65%.Out of 338 respondents, 212 wereclients, 95 were carers, 6 were carersand/or clients and 15 were concerned.50% of the respondents graduated fromhigh school (year 12 or equivalent)and 38% had diploma or universitydegree. 25 % of persons with epilepsywere employed full time and 43%were unemployed. 46% of those whoanswered the survey informed that theirweekly income is less than 400 dollars.About 62% of people with epilepsy owntheir home and 24% were renting. Out of212 clients, only 118 persons (57%) hada driving licence. The number of women(60.8%) who were living with epilepsywas significantly higher than the numberof men (38.7%). A more detailed surveydata analysis will be produced in thenext edition of The Epilepsy Report.Baker GA, Jacoby A, Buck D et al (1997) Quality of life of people with epilepsy; A European study. Epilepsia, 38, 353-62Baker GA, Brooks J, Buck D, Jacoby A (2000) The stigma of epilepsy: a European perspective. Epilepsia, 41(1), 98-104Britten N, Wadsworth ME, Fenwick PB (1984) Stigma inpatients with early epilepsy; a national longitudinal study. Journal of Epidemiology and CommunityHealth, 38(4) 291-5Brown, K (2006) Social research and epilepsy in Australia. The Epilepsy Report, 4-5Dilorio C, Obborne, SP, Letz R, Henry T, Schomer DL, Yeager K, (2003) The association of stigma with self-management and perceptions of health careamong adults with epilepsy. Epilepsy & Behaviour, 4(3), 259-267Goffman E (1969) Stigma: notes on the management of spoiled identity. New Jersey, Prentice HallHermann BP, Whitman S, Wyler AR et al (1990) Psychosocial predictors of psychopathology in epilepsy. British Journal of Psychiatry. 156, 98-105Jacoby A (1994) Felt versua enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Social Science & Medicine,38(2), 269-74Jacoby A, Baker GA, Steen N Potts P, Chadwick D (1996) The clinical course of epilepsy and its psychosocial correlates; findings from a UK communitystudy, Epilepsia, 37, 148-61Lee SA, Yoo HJ, Lee BJ, (2005) Factors contributing to the stigma of epilepsy. Seizure, 14(3), 157-163Link B and Phelan J (2001) Conceptualizing stigma, Annual Review of Sociology, 27, 363-385Ratsepp M, Oun A, Haldre s, Kaasik AE (2000) Felt stigma and impact of epilepsy on employment status among Estonian people: exploratory study.Seizure, 9(6), 394-401Suurmeijer TPBM, Reuvekamp MF Aldenkamp BP (2001) Social functioning, psychological functioning and quality of life in epilepsy, Epilepsia, 42,1160-68Walker C (2007) Researching the personal impact of epilepsy. Epilepsy Australia,Westbrook LE, Bauman LJ, Shinnar S (1992) Applying stigma theory to epilepsy; a test of a conceptual model. J Pediatric Psychology, 17, 633-49WHO (2001) Epilepsy: social consequences and economic aspects, Fact sheet No 166, World Health Organisation, GenevaFernandes PT. Salgado PC. Noronha AL. de Boer HM. Prilipko L. Sander JW. Li LM. Epilepsy stigma perception in an urban area of a limited-resourcecountry. Epilepsy & Behaviour. 11(1):25-32, 200712 THE EPILEPSY REPORT MAY 2008

Martin RaffaeleSteppinga personal journeydeveloped epilepsy due to scar tissueI that formed on my left temporal lobefollowing two periods of complicatedfebrile convulsions in my first two yearsof life.I experienced absence and simplepartial seizures during my teenage years,but these were not recognized as seizureactivity. At the time it was thoughtthat the auras I was experiencing wereoccurring due to sinus problems.It was in my early twenties when Ibegan to experience complex partialseizures. Tests detected the tissuedamage caused by those febrileconvulsions so many years before and Iwas finally diagnosed with epilepsy.Singing was always an importantpart of my life, and from the age offifteen I received many scholarships tofurther my singing studies. Howeverthe scholarships discontinued not longafter I began to experience regularseizures, and while I had been trainingand working as a professional singer,the increasing frequency of the seizuresforced me to abandon my singing career.Not having received any epilepsy14 THE EPILEPSY REPORT MAY 2008education or support, I was unawarethat there were any guidelines for livingwith epilepsy. I believed if I could relaxenough and breathe through it, I couldcontrol my seizures. The consequencesof performing certain actions wereincomprehensible, such as swimmingalone in the surf. As a result I had aseizure while swimming and drowned.Thankfully a surf lifesaver was on thebeach and dragged me from the surf andresuscitated me.When I regained consciousness Ifound myself in the Intensive Care unitof Warriewood Hospital. I was told thatI had a large amount of sand in my lungsand that I was only alive because mylungs were so well developed due to myintensive singing training. All of thisoccurred because I had never been toldof the dangers of swimming alone.Over time I have experienced manyphysical injuries, including a dislocatedshoulder, broken foot, falling ontoa moving car, falling off a railwayplatform onto tracks, plus otherstoo numerous to mention, due to myseizures.Until I was made aware I was eligibleto receive a disability pension, Iworked at any job I could find. A stintat waiting tables saw me spilling redwine on models dresses while they wereattending important gatherings, anddropping trays of glasses and plates dueto shaking, a side effect of taking highlevels of epilim. Understandably, thiscareer did not last long.With the lack of understanding inthe community I began to withdrawfrom being involved in social activity.However, I was determined not to allowmy condition to control me and in 1997,at the age of 26, began studying at TheUniversity of New England.However I continued to have, onaverage, seven complex partial seizuresa week even though I was takinghigh levels of a combination of threemedications. Surgery was recommendedand in 1998 I had a left partial temporallobectomy.In 1999, around six months followingthe operation, I recommenced mystudies at the University of Sydney. Ihad been seizure free but by the Juneof ‘99 began, once again, to experiencea high level of seizure activity. Furtherneurological tests were carried out andit was found that the previous surgeryhad not been completed correctly andI underwent a second partial temporallobectomy in October, 2000.I received no support or educationfollowing either surgery on theimplications of this procedure. Itwas only my own investigation andthe reading of books such as, TheComprehensive Evaluation andTreatment of Epilepsy (Steven C.Schachter, Donald L. Schomer), thatI became aware of the symptoms and

from darkness into lightconsequence of a seizure, allowing me torecognise the actions of the pre-ictal andpost-ictal period. This knowledge gaveme the opportunity to not only recogniseand understand why particular emotionsare experienced prior to the convulsion,but also an ability to return back toregular activities without emotions suchas depression, a factor of the post-ictalperiod for many, from strongly affectingme.I purchased the audio recording of abook titled, Practicing the power of now,written and read by the author, EckhartTolle and listened to this CD seriesevery night as I went to bed. This bookwas extremely helpful and providedan insight into the personal and socialdifficulties I was experiencing.It is unfortunate that epilepsyeducation services are not readily madeavailable to both a person with epilepsyand those who are closest to them as theonset of epilepsy in adulthood can oftenlead to a division in relationships and inthe family environment.This lack in knowledge was a stronginfluence in the separation and endingof my two marriages. It has been thesetwo experiences in combination withthe ability to develop a third personperspective when reflecting on them,that I adopted following the reading ofTolle’s book. This has enabled me toobjectively understand the difficultiesthat the partner experiences.The major difficulty that I experiencedfollowing the separation in my secondmarriage in 2003 was the need to dependcompletely upon myself. This meantwalking for 30 minutes to the closestsupermarket, and bringing home severalbags of groceries by bus on a weeklybasis. I was now required to take careof both myself and the home, includingpaying the bills and maintaining thehome, which was difficult to perform.It was at this time that I began not onlyto keep a diary to remind me of allthe activities I needed to do, but alsoa journal to understand the emotionaldifficulties I was experiencing.Adopting the advice of my mother tokeep a journal, writing on a daily basisthe actions that I had performed andthe emotions I was experiencing, wasa great breakthrough after having beenthrough long periods of depression.This action saw me stepping fromdarkness into the light. I became notonly aware of the impact of surgeryand seizures on my memory, but alsothe psychological effects created by thelack of knowledgeable support and thisallowed me to recognise the difficultiesI was experiencing. In fact it was thisneed to understand that developed mystrength and dedication to continue mystudies and offer understanding andeducation to others.The two operations, and the periodsof recovery saw my Bachelor of Arts(Sociology) degree taking seven anda half years (June 2005) to complete.I began studying a Graduate Diplomain Psychology in the second semesterof 2005, and due to the completion ofrelevant subjects while studying myB.A., I was able to complete this degreeat the end of 2006. I began my presentdegree, the Masters of Philosophy at thebeginning of 2007. This two year degreewill be completed this year (2008).Following the submission and markingof this research paper I will begin myDoctor of Philosophy (PhD) studies,2009.The use of computer programs, suchas Kurzweil and Dragon NaturallySpeaking, has assisted my academicstudies immensely. There have beentimes in the past when I have beenadvised by academics and specialiststo “forget it all” and find some job in asupermarket. It has been my own beliefsthat by achieving these goals I can offerthe inspiration for others to attempt toaccomplish what seem to be unattainablegoal, and also perform academicresearch on epilepsy, offering knowledgeand understanding from an angle that, tothis point, has not been shown.At times I have felt that the hurdlesbefore me were insurmountable, butI have learnt to access help throughdisability services. During my journeyI have had help from some wonderfulpeople, but I had to find my way firstbefore I could start helping others.As well as studying and singing inthe University choir, I also offer supportfor men who have developed epilepsyas an adult and their families, assistingthem to understand the changes that arerequired to be made, both physically andsocially.I believe that many people havethe ability to attain what seem to beimpossible dreams if the necessaryknowledge and support are readily madeavailable to all concerned.Martin has chosen epilepsy as the area of studyfor his thesis and is still recruiting participantsfor this project. A detailed description of Martin’sresearch project and a call for participants can befound on the following page.THE EPILEPSY REPORT MAY 200815

An invitation from theEpilepsy Foundationof VictoriaThe Epilepsy Foundation of Victoria (EFV) invites you to become anoccasional participant in the Epilepsy Foundation’s ongoing researchprogramme into the social effects of living with epilepsy and caring for thosewith epilepsy. We need people to tell us about their experiences and views ofliving with epilepsy.What is EFV Research Participant Register (RPR)?The Epilepsy Foundation of Victoria’s Research Participant Register is anongoing initiative created in 2006 to establish a unique research sourcefrom which we can learn much valuable information about epilepsy that canbe used to improve the lives of people affected by this condition. This is theonly register of its kind in Australia and we have not so far learned of anotheranywhere else in the world.Why is it important to join in this register?The World Health Organisation has stated that: the social consequences ofepilepsy are often more difficult to overcome than the seizures themselves.They are talking about issues like finding and keeping a job, transport anddriving and the attitudes of other people towards epilepsy. Yet in Australia,there is hardly any reliable research into these social consequences. If theEpilepsy Foundation of Victoria gathers detailed factual evidence of this kind,we will be even more successful in lobbying governments for a better deal anda fairer go for all those living with epilepsy.Who is eligible to join in RPR?Following individuals are eligible to join the register.o Individuals who have epilepsy/seizure disordero Carers who look after someone with epilepsy/seizure disorderAre there risks to me as a research register participant?This is not a medical or clinical research register. From time to time, we mightcontact you and ask if you would be prepared to answer some questionsover the phone or fill in a mailed questionnaire. Sometimes there will be smallgroup meetings of participants at the Foundation’s office in Camberwell or aregional centre to which you might be invited.Does putting my name in the RPR obligate to participate infuture research projects?Putting your name does not obligate you in any way. You may be too busyor just not feel like participating at that time – that’s fine! But if you do, anyinformation you provide will be confidential, anonymous, safeguard and onlyused for specified research purposes.How would I benefit by joining the register?There may be opportunities to talk with people living with epilepsy and thosewho work with them. Most importantly, this is an opportunity to be part of alongitudinal study of living with epilepsy – the first of its kind.If you are interested in learning more about thisresearch contact:Dr Jaya PinikahanaPrincipal Social ResearcherPhone: (03) 9805 9125 Fax: (03) 9882 7159jpinikahana@epilepsy.asn.auParticipants soughtfor epilepsy researchprojectMartin Raffaele is currently studying for his Mastersin Psychology at The University of Sydney. His researchproject is titled:An exploration of the psychosocial effects that schoolagechildren with Childhood Onset Absence Epilepsy(CAE) experience when their condition is misdiagnosed asAttention Deficit-Hyperactivity Disorder (ADHD).Project OverviewThe aim of this research is to create an understandingof the psychosocial effects on school-age children withchildhood onset absence epilepsy (CAE) when theircondition is misdiagnosed as attention deficit-hyperactivitydisorder (ADHD). The nature of psychosocial effectsthat are evident in CAE children when misdiagnosis andinappropriate labelling is experienced will be explored.The aim is to understand the reactions of those closest tothe child with childhood onset absence epilepsy (CAE)at the time of the attention deficit-hyperactivity disorder(ADHD) diagnosis and sequentially, and how these reactionsaffects/affected the child with CAE psychosocially will beinvestigated.ParticipationI am seeking five adolescents/young adults with childhoodonset absence epilepsy (CAE), whose condition at an earlierage was misdiagnosed as attention deficit-hyperactivitydisorder (ADHD) to participate in the study. Theidentification of the participants will remain confidential.In-depth personal interviews will be of approximately onehour duration. A second interview can be made available iffurther time is needed to discuss the experiences and answerfurther questions. Each interview will be audio-recordedwith participants’ consent. Based on the decision of eachparticipant, the interview/s will take place either at theirresidence or in a private office at The University of Sydney.The parent (guardian) of each participant will also beinterviewed on what effect they feel the diagnosis of ADHDand the later correct diagnosis of CAE played on the child atthe time of diagnosis. The result of these interviews will beshared with the participants for their approval.This research study has been approved by the HumanEthics Research Committee, The University of Sydney.For more information please contact:Martin RaffaeleBA. GradDipPsych.Faculty of Education and Social WorkBuilding A35.518University of Sydney NSW 2005martin.raffaele@gmail.com16 THE EPILEPSY REPORT MAY 2008

Tuggeranong United FCkicks a goal for epilepsyFor the past 3 years, the Tuggeranong United Football Club(TUFC) have joined forces with Epilepsy ACT to holdtwo annual events, the ‘Adam Fry Memorial Shield’ and the‘Dawn to Dusk 12 Hour Non Stop Football Match’.Both days operate around two themes, one is thecelebration and enjoyment as a player and spectator in oneof the world’s greatest games –football. The other, and thisis even more important, is that the days are dedicated toraising awareness and funds for epilepsy. Through sausagesizzles, raffles, player and spectator donations, the events havemanaged to raise over $3000 towards local charity EpilepsyACT.In 2006, Tuggeranong United Football Club decided it wouldalso like the challenge of putting together a non-stop footballmatch for 12 hours straight and for the past two years havebeen succesful at it. The day has also been dedicated to raisingmuch needed monies for Epilepsy ACT through participantdonations. Participants in the day include males and females,young and old, professional and amateur players. The gameis split between two teams, the Kambah United “Greens” andthe Wanniassa “Golds”, and involves a series of 20-minute“roll-on, roll-off” matches. At the end of the day the scores forboth sides are added up, with the first year ending in an 83 alldraw while in 2007 the “Greens” defeated the “Golds” 109 to104. The event is held every November in conjunction with theTuggeranong Community Festival.Executive Director of Epilepsy ACT, Jacinta Cummins said‘Research shows that people with epilepsy are often excludedfrom team sports. By working together and raising awarenessof epilepsy within the sporting community we hope that willsoon be a thing of the past in the ACT.’Team Manager, Matthew ‘Macca’ McDonald added‘Tuggeranong United Football Club has supported EpilepsyACT for a number of years and as a player it is rewarding tohelp a worthwhile cause through our footballing community.I look forward to our further support through the world game!’The ‘Adam Fry Memorial Shield’ is held in memory of clubplayer, Adam Fry, who tragically lost his life at a young age in2004. This event was held for the 4th year in April and broughttogether teams from numerous clubs throughout Canberra,including Canberra Olympic, Belwest, ANU, Gungahlin, andTuggeranong who are all keen to support and play for such aworthy cause.‘It’s a great way to remember our friend who loved the gameof football and its also a day to allow everyone in the club andthe community to show its support for Epilepsy ACT,’ said‘Macca’ McDonald.Tuggeranong United Football Club Patron and FederalMember for Canberra, Annette Ellis MP on attending thisyear’s event said ‘It was a great afternoon and most enjoyablefor me, I was particularly pleased to see Adam’s parents wereable to attend. This event is a terrific concept that honoursthe memory of Adam and maintains the connection betweenAdam’s family and Epilepsy ACT. My congratulations to theTuggeranong United Soccer Club and to the other teams whocompeted. The funds raised will be welcome by EpilepsyACT who provide wonderful support to the community.’Tuggeranong United Football Club hopes to be able tocontinue these two events well into the future, with theexpectation that they will continue to get bigger and better.18 THE EPILEPSY REPORT MAY 2008

The Epilepsy Centre, SA/NTMoving MountainsThe Governor of South Australia,His Excellency Rear AdmiralKevin Scarce AC CSC RANR, in thepresence of The Epilepsy Centre’sChief Executive Officer, Robert Cole,together with the Board and more than120 special guests, officially openedThe Epilepsy Centre in Hindmarsh, onThursday, 1 May 2008.When asked the reason for the moveRobert Cole said “The Epilepsy Centrerelocated offices to Hindmarsh to allowgreater access to the region’s mostvulnerable consumers and that the newspace is well suited to the needs of TheEpilepsy Centre, offering a balance ofmeeting and office space.“The relocation was a great move asit allowed staff to work closely withthe community on projects improvingservices to people living with epilepsy.Robert added, “This Centre continuesthe tradition of excellent responseto people living with epilepsy. TheEpilepsy Centre has a 32 year trackrecord of helping those who need usmost and this service centre will help usto deliver our services more effectivelyand efficiently.“In the past 12 months alone, we haveassisted over 6,500 people. Over half ofthose enquiries were dealt with faceto-face.I’m sure the new location willensure The Epilepsy Centre assists evenmore people needing assistance.“We have grown to become the majororganisation in South Australia andthe Northern Territory representingpeople living with epilepsy. We existto improve the health, well being andquality of life of people with Epilepsyby providing services in the areasof: Advice, Advocacy, CommunityEducation, Referral Services,Counselling and Support.”The Epilepsy Centre relocation wasdriven by a need for more efficientspace utilisation, and reduced operatingexpenses noted Mr Cole.The historic Hindmarsh MemorialInstitute, built as a tribute to the citizensof Hindmarsh commemorating TheGreat War 1914-1918, was opened in1922 by Governor Weigall. It is nowhome to The Centre and is located at 266Port Road, Hindmarsh, South Australia.The Epilepsy Centre can be contactedon 1300 852 853 or for more information,visit www.epilepsycentre.org.au .Photos: Robert Cole, His Excellency Rear AdmiralKevin Scarce AC CSC RANR Governor of SouthAustralia, Mrs Scarce and Barbara Rajkowska,President The Epilespy Centre SA/NT at the officialopening of The Epilepsy Centre andThe Epilepsy Centre’s new premises, the historicHindmarsh Memorial Institute.THE EPILEPSY REPORT MAY 200819

Standardized servicemodels; innovationand the life potentialof persons whoreceive servicesMichael Kendrick is currently anindependent international consultant inhuman services and community workwith ongoing work in the United States,Canada, Australia, New Zealand,the Netherlands, Ireland, Scotlandand England, Nicaragua, Honduras,Ethiopia, United Arab Emirates,Guatemala and Belgium.His interests, involvements and writingshave included leadership, servicequality, the creation of safeguards forvulnerable persons, social integration,change, innovation, values, advocacy,the role of individual persons andsmall groups in creating advances,evaluation, alternatives to bureaucracy,personalized approaches to supportingpeople, and reform in the humanservice field amongst others.Citation: Kendrick, Michael J.,“Standardized Service Models;Innovation And The Life Potential OfPeople Who Receive Services” TASHConnections, January/February 2007,p.21-23Author’s contact details:Kendrick Consulting Intl4 Bullard Ave., Holyoke, MAUSA 01040kendrickconsult@attglobal.netwww.kendrickconsulting.orgThough many of us prefer to think ofourselves as responsive to people andtheir needs, the reality of many everydayservices practice is not at all consistentwith this self-image. This is not meant tosuggest that many people are lacking thesetraits; but rather, the possession of theseattributes does not apparently have a largeeffect on service patterns “per se.”People receiving services are typicallyoffered what amounts to standardizedservice packages or fixed models of careand support options. What is meant by“standardized” or “fixed models” is thatthe pattern of service is largely pre-set.Thus, the person is fit into the servicesavailable. Subsequently what a personneeds to maximize the inherent potentialof his/her life is often not available fromstandardized service delivery models.Alternatively, a good or beneficial serviceevolves to each situation so that supportsare customized to an individual’s uniqueneeds. Such individualization cannotoccur when the person’s uniqueness issubstantially ignored by systems levelservice practices.Fixed service models aretypically designed prior to theperson’s arrival.The vast majority of service models aredesigned without reference to the serviceuser and usually at a point well before theperson arrives seeking support. Designingservices in advance of the person arrivingsignificantly diminishes the likelihoodthat the services available are the bestoption for the person. The problem, amongothers, is that the designers are guessing orspeculating about what the person actuallyneeds. This error is further accentuated ifwhat is eventually offered draws from afixed menu of options.When one lacks vital specific knowledgeand understanding of a person it is likelyimpossible to do any more than just guessor speculate about what someone mightneed. Guessing about people in the absenceof knowing them well leaves organizationswith the option of having to design theirservices based on generalizations drawnfrom other service users. Predictably,this will result in that person receivingsomething more akin to a “one size fits all”solution to their needs. Generalizationsof service needs, in the absence ofpersonalized information, cannot help butresult in service models that only partiallymeet specific personal needs at best.Fixed service models aredesigned (by others) forpeople rather than withpeople.It is not always recognized how fewdecisions about service design andimplementation are actually made byservice users. This may be due to ourpredilection of seeing ourselves as moreempowering than we really are. Whenpeople other than the person served makedesign decisions, there is a great risk thatsuch decisions may reflect the servicedesigner’s priorities and needs rather thanthose of the service user.Fixed service models areusually substantially nonnegotiable.In order to be responsive to the needsof people who do not fit a fixed pattern,20 THE EPILEPSY REPORT MAY 2008

the provider must be willing to negotiatehelpful changes in service. Unfortunately,very few providers state and followthrough on a pledge to make servicefeatures that are consumer friendlyand flexible. As a result, service usersare presented with a “take it or leaveit” proposition. Naturally, once fixedpatterns become entrenched, servicepractice responds poorly to the potentiallylegitimate demands of service users forreasonable flexibility and responsiveness.This preference for upholdingstandardized practice may predictablydefeat efforts to change services to makethem more effective for a given person(i.e. allow services to evolve in nonstandardizedways).Fixed service models arebased on assumptions ofroutinized needs.It is not uncommon for standardizedservice models to assign a commonnumber of hours, days, weeks or monthsof service to a group of individualsand then set those assignments in placefor prolonged periods of time (e.g.weeks, months, or even fiscal years).In such models, an individual’s needsare presumed to be unvarying. Thus,the service patterns are generic acrossservice recipients. Without flexibilityin service responses, generic servicepatterns become routinized andeventually institutionalized virtuallyignoring variability in needs. Often,financing for standardized services arebased on algorithms that use generalizedassumptions about people rather thantailoring to individual variances of need.Notably, even some “individualizedfunding” models use standardizedfinancing formulas.ReferencesFixed service models aredriven by staffing patternsnot individual needs.It has already been said thatstandardized service models try to fit theperson into what is available as opposedto designing individualized servicepatterns. This lack of flexibility can oftenbe systemic and pervade beyond thebroad service pattern to all methods andthe human beings who actualize them.In many instances, the deeper driverof service models may actually be thestaffing pattern in that the logic of thispattern preempts service user priorities.This is most often seen in the restrictionof service only to those hours ofconventional operation, such as is typifiedin the “9 a.m. to 5 p.m.” availability ofservice.The need for innovationrelated leadership in order tofulfill human potential.If the possibility for people to realizetheir dreams and inherent life potentialis to be optimized, it will inevitablyrequire personalized lifestyle and supportinnovations that arise out of the specificneeds of a given individual. Innovativesupport options are often limited becauseof the overly standardized nature oftoday’s dominant patterns of service.Ironically, this is occurring at a timewhen the rhetoric of “person centered”service is highly prominent. The losers inall of this are the people whose lives andlife prospects are not receiving the precisesupports and catalysts they need to thrive.Clearly, unless we see a new generation ofservice leaders who commit to this goal,the entrenched nature of our services andsystems will preclude many people fromexploring the real potential of their lives.To transform into truly individualizedand person centered services serviceleaders will need to:• Develop service arrangements oneperson-at-a-time.• Cease developing services “for”people• Make all aspects of service modelsnegotiable• Move the necessary authority andresources to sustain and guide servicemodel implementation into the hands ofthe people most directly affected.• Provide the supports to assist peopleto “imagine better” on an ongoing basis.• Provide the various supports to betterenable people to “start from scratch”and to experiment with imaginativeor innovative ideas for life or serviceimprovements.• Expose people to options andexamples that enable them to see beyondthe options they are currently mostfamiliar and comfortable with.• Limit the extent to which invasive andprescriptive bureaucracy or managementpractices impairs the ability of people todevelop more responsive personalizedservice models.• Ensure that service users and theirallies are sufficiently educated andsupported to be more empowered andeffective in their service design andimplementation negotiations withagencies.• Devote a small percentage of agencyand system resources each year to effortsto “remodel” services that may havebecome outdated and entrenched, infavor of more personalized serviceoptions.Kendrick, M. J. (2000, March; July) “Some initial thoughts on providing right relationship between staff, professionals, and the people they assist”.Queensland Advocacy Incorporated Newsletter, Part A and B.Kendrick, M. J. (2000, March), When people matter more than systems. Paper presented at, The Promise of Opportunity Conference, State Commission onthe Quality of Care for the Mentally Disabled, New York State Developmental Disabilities Planning Council, New York State Office of Mental Retardation andDevelopmental Disabilities and the Self Advocacy Association of New York State. Albany, New York.Kendrick, M. J. (2001). “The limits and vulnerabilities of individual support arrangements”. Interaction, 15(2) NCID, Australia.Kendrick, M. J. (2001). “An ethic of modesty in the support of others.” In Fratangelo, P., Olney, M., Lehr, S. (Eds.) One at a time: How one agency changedfrom group to individualized services. Training Resource Network, St. Augustine, Florida.Kendrick, M. J. (2002). “The potential role of advocacy in imagining better”. Frontline of Learning Disability, 51, 26-27, Dublin, Ireland.Kendrick, M. J. (2002, July). “Some examples of broad strategies to shield consumers and families from invasive bureaucracy.” Crucial Times, Edition 24,Brisbane, Australia.Kendrick, M. J. (2004). “Some predictable cautions concerning the over-reliance and overemphasis on person centered planning.” The Frontline of LearningDisability, 58, Dublin, Ireland.Kendrick, M. J. (2004). “The potential role of questionable assumptions in personal planning processes.” The International Social Role ValorizationJournal, 5(1&2).Kendrick, M. J., Petty, R. E., Bezanson, L., & Jones, D. L. (2006, January). “Promoting self direction and consumer control in home and community basedservice systems”. The Institute for Rehabilitation and Research: Houston, Texas.Kendrick M. J. (2007, January). “The challenges of authentically getting what people actually need on a person-by-person basis”. The Frontline of LearningDisability, 69, Dublin, Ireland.THE EPILEPSY REPORT MAY 200821

Children with epilepsy – like all children – needto experience and enjoy outdoor recreation.Supervised camps provide a safe environment inwhich this can be achieved.meeting the gang againClare Thorne reports on Epilepsyguiding principle of EpilepsyA Tasmania’s community educationprogram is to build self esteem andconfidence in children with seizuredisorders. The friendships and learningexperiences camps provide is one of thebest ways to do this.Epilepsy camps were initiated inTasmania in December 1999 because ofrequests from parents and people withepilepsy to meet others who had similarconditions and experiences. They havealways proven to be the highlight ofevery year.Camps are often the only place aparent will feel confident that theirchild’s epilepsy will be properlymanaged and the only opportunity they22 THE EPILEPSY REPORT MAY 2008have to get a break. Many parents findthat their family members may be happyto look after their other children but arenot willing to take care of a child withepilepsy in case they have a seizure.While the major focus of our campsis to have fun, opportunities forcounselling and education are built intothe program. One of the best outcomes,people tell us, is just the chance tospend time with other people who reallyunderstand.In February the annual EpilepsyJunior Camp was held at the fantasticCamp Clayton on the North West Coastof Tasmania. Children, families andvolunteer carers from all over Tasmaniatravelled to attend.Campers arrived on Friday eveningand that time was spent getting settled inour cabins and playing some getting-toknow-yougames. It was lovely to see areal mix of first time campers and otherswho had been coming for many years.Saturday morning began with atalk about our epilepsy over breakfastfollowed by a swim at the beach. Aftermorning tea the very brave then wentover to the Giant Swing, while othersspent time in the games room. Afterlunch it was off to the Flying Fox –which was fantastic, even if the weatherwas a bit damp.As part of the evening’s entertainment,each regional group was to perform askit based around something to do with

my favouritething aboutcamp?epilepsy so in the afternoon everyonebroke into their groups to begin workon their skits. We were very lucky tohave Mr Danny Gibson, a local MusicalTheatre Director come along to give ussome tips. After dinner and with muchanticipation, the show began. This yearthe North West region proved victoriouswith a very colourful and thoughtprovoking performance. The South andNorth also did a fantastic job.The rest of the evening was spent onthe Karaoke machine, which was metwith lots of enthusiasm!! While therewere a few sleepy heads about the nextmorning, enough energy was found totackle the ‘Challenge Course’ working inteams to achieve the various challenges.Above: Campers getting on the bus at LauncestonLeft: ‘Bossie’ and helpers on the Challenge CourseBelow: Danny Gibson presenting the trophy for the‘best skit about epilepsy’ to Kay, on behalf ofthe North West TeamTasmania’s Junior Camp 2008It was wonderful to see everyone workso well together.After yet another fabulous meal wepacked up our cabins, and the Hobart/Launceston Bus left around two o’clock,with lots of sleepy people on board.Thanks must go to the CommunitySupport Levy through the TasmanianGovernment who funded this camp,as well as the Lions Clubs of KingsMeadows and West Tamar and the CarerRespite Centre in the North.The biggest thank you, however, mustgo to the volunteer carers who gave uptheir weekend to enable us to have theCamp.Playing in games roomGetting togetherAnythingSwimming and KaraokeKaraoke night andswimmingEverythingThe get together and havefun and laughsMaking new friendsEverythingEverything – I had a greattimeFlying fox and giant swingMeeting new people andsharing stories aboutepilepsyThe games roomThe food and activitiesEverythingMeeting new people andhaving funThe peopleGetting together withother families that lovehaving a great timeJust being around peopleand friendsSneaking out at nightGiant swingMeeting all the gang againGreat companyEverything – it was goodFood !!!Comments taken from Camp Evaluation FormsTHE EPILEPSY REPORT MAY 200823

unexpected rewardsconfessions of a volunteer by Lesley RidgewayBack in 1998, I took myself off toBendigo to complete a degree inOutdoor Education. At that time, I hadbeen involved in camp programs, teambuilding/personal development and trainthe trainer programs for 5 years. In myfinal year in 2000, I was required to dovarious forms of field placement. It wasthere on the noticeboard of potentialplacements that my relationship with theEpilepsy Foundation of Victoria began.I made an appointment with LisaRath in order to learn more about it alland for Lisa to assess my suitabilityas a volunteer. The contact up to thispoint was impressive. I had spokento Rosemary from Melbourne andLisa from Bendigo and enjoyed thefriendliness and professionalism thatwas given. After my appointment withLisa, I intuitively knew that I wasgoing to be more involved with thisorganisation that just a once off campexperience. I sensed and liked thenurturing and highly organised feelingthat I had so far. Lucky for me that Lisaassessed me as a suitable volunteer.I attended the adult camp that year,re-acquainting with Lisa and meetingJan Burns, the camp co-ordinator.Another staff member, Camille Heagneywas brilliant with the volunteer ‘getto know you’ activities and with theoverall camp activity program. Again,I was impressed with the efficiency,organisation and professionalism inwhich the camp was run.The following year, I attendedthe Family Camp to find that it wasCamille’s last camp as she was soon tobe leaving the Epilepsy Foundation. Imentioned to Jan that I would be happyto co-ordinate programs in the future ifthey needed someone. Jan thought thatsounded like a good idea. That was eightyears and 16 camps ago.I have really enjoyed each and everycamp experience, but it is more thanthat for me. It is about friendships andrelationships. I have developed lovelyfriendships with Jan and Lisa, twowomen that I highly respect for whatthey do and how they do it. The love,the care, the warmth that they give tochildren and their families, and adultswith epilepsy is inspirational. I havelearned from them and continue to do so.Talking with and listening to people atcamp, particularly mums and dads is sovery eye opening, rewarding, sad, joyful,heart breaking and also very funny attimes. I may never see them again orthey may come to several more camps.As a volunteer, I am giving of myselfand expect nothing in return. Butthere’s the catch because I get so muchin return. I get enrichment in so manyways. Sharing in people’s lives for afew days, people with, or affected by,epilepsy offer insight into their world– hardships and struggles, joys anddisappointments, hilarity and sadness.You know, it is largely hardships andstruggles, but for most people on camp,they find others in their very samepredicament, they share stories, theymake friends, they swap numbers, theycry (for all sorts of reasons), they laughand relax for the first time in ages.Seeing people relax, talk and laughtogether. That is what is special. That iswhat makes me feel enriched because Iam a very small part of this wonderfulprocess.I walk away from each camp havingexperienced all this, having the honourof seeing inside and sharing otherpeople’s worlds. My experiences at campmake me a better person and no amountof money or reward can do that. It is therole of a volunteer and the relationshipsthat allow me to receive more than Igive.The photo is of a mural made atthe last family camp. Every family isrepresented in their own individualunique and beautifully creative way. Wehave just started doing these at the lastfew camps. We will need a lot of walls tohang them on if we keep doing it. Thismural can be viewed at the Foundations’office in Camberwell.24 THE EPILEPSY REPORT MAY 2008

Providing epilepsy services to a region covering almost 2.5 million square kilometres– unimaginable? … not for Mark Francis, Services Manager for The Epilepsy Centreof South Australia and The Northern Territory. For this is his ‘office’ and the isolatedcommunities he assists, his ‘clients’.Epilepsy Awareness Programassisting rural and remote communitiesThe Epilepsy Awareness Programhas been a major focus for TheEpilepsy Centre.The aim of the project is to providequality services for people with epilepsy,their families and the communitythroughout regional South Australia andThe Northen Territory.The State of South Australia covers anarea of 1,043,514 sq. km. so as you canimagine many miles have been coveredalong highways and unsealed dustyroads since this program began.Just to give you an idea of thedistances covered since the programbegan – Coober Pedy to the north isapproximately 835 kms, west to Cedunais around 770 kms, the most southernregion of Mt Gambier lies 435 kms fomAdelaide and to the east it is 245 kms toRenmark. And this is only one way! Areliable vehicle is essential and we weredelighted when Community Benfit SAfunded the purchase of a vehicle thatcould handle the many road conditionsone encounters on these trips.Many rural and remote areas havebeen visited and assistance has beenprovided to indigenous communities,school communities, rural supportgroups, nuring and medical staff in ruralhospitals and nursing homes, hospitals,child care centre, GP clinics, libraries,field days and workplaces.The Epilepsy Awareness Programprovides these communities with acomprehensive range of services.Assistance varies from providing generalepilepsy education, teacher training,medical staff training, formulating careplans, referring clients to health andwelfare agencies, counselling, advocacyand support.The results of this program aretangible. There is now greater awarenessand knowledge about epilepsy in allthe communities and the provision ofnew support groups and counsellingservices for those people living withepilepsy in such remote locationshave had a marked effect on theirself esteem and confidence. We havealso seen improvement in the healthand independence of people livingwith epilepsy in these communities.The program has gone a long way indemystifiying epilepsy, particularly inindigenous communities.To date, twenty one schools haveparticipated in the program. Thisexpansion of our services for schoolsin regional areas has resulted in schoolcommunities becoming ‘EpilepsyAware’. But our work here has onlybegan as there are over 310 schools yetto be visited in rural areas.Similarly, the expanded service is wellregarded by regional medical providersas the provision of current informationon epilepsy, seizure recognition andmedications has greatly increased theirepilepsy knowledge.In the Northern Territory, we havebegun to mirror our services offeredin rural and remote SA. So far, wehave provided support, training andinformation services to areas such asTennant Creek, Jabiru, Humpty Doo,Katherine and Pine Creek. We haveestablished relationships with a numberof Aboriginal Health Centres and havepartnered with other Disability andHealth Support Agencies to deliverservices collaboratively throughout theNorthern TerritoryAs part of our commitment to ruraland remote communities, we are aboutto embark on an exciting project toconnect people in rural and remoteareas to the Epilepsy Centre via VideoLink up. We plan to pilot the project inMt Gambier in the South East of SouthAustralia. This project will enablesupport groups to have access to ourfacilitators via video link as well asenabling our workshops to be streamedlive giving participants in rural areas theability to interact with the speakers andother participants. Our plan is to extendthis service throughout South Australiaand The Northern Territory.The Epilepsy Centre provides supportto people living with epilepsy and theirfamilies and the community throughoutregions that cover nearly 2.5 millionsquare kilometres which is why thisproject is so important for us to continueto deliver vital support services to ruraland remote communities.10,000 people assisted in rural areas ...• 1360 students and over 100 education staff across 21 schools in rural areas• Education was provided to 200 nursing and medical staff in rural hospitals and nursing homes• Delivered over 5000 pamphlets to hospitals, schools, child care centres, GP clinics and libraries etc• Support groups set up in Mt Gambier and Pt Lincoln with more planned for Whyalla, Naracoorte and Pt Pirie• Provided community education / information to over 1000 people through field days, general information sessions and workplacesTHE EPILEPSY REPORT MAY 2008 25

Epilepsy Australia & miVitalspartners in promoting personal health managementAccess your health records anytime, anywhere!Living with any chronic healthcondition requires keeping a recordof doctor’s appointments, who yousaw, what tests were carried out andwhen, and the results, a history of themedications and doses prescribed, and inthe case of epilepsy, a record of seizurefrequency, hospital admissions andinjuries to name just a few.And how often do we misplace our olddiaries, or lose them when moving, ordepend on our doctor to keep the recordsfor us only to find that when we changedoctors it’s not as easy as we thought tohave our records passed on.Managing and monitoring our healthrequires a fair bit of organisation on ourpart and quite frankly, we are generallynot very good at it.However there is now an innovativesecure health management system,miVitals, that allows you to store andmanage your health records online.miVitals is like an online filingcabinet for your personal health andlifestyle information. It enables peopleto record, manage and access vitalinformation 24/7, from anywhere inthe world. Information from traditionaland complementary medicine, optical,dental, fitness, pregnancy and chronicillnesses such as epilepsy is centralisedand integrated. Members can alsoattach, or have their health professionalsattach documents such as reports, testresults, and scans. Respecting privacyissues, miVitals members have theability to share select information withprofessionals or family involved in theirhealth management. Vital informationis also accessible in the event of anemergency.Developed by an Australian company,miVitals Technology Pty Ltd bringstogether twenty years of knowledgeand networks in health care with stateof the art and commercially successfulinternet innovation. It is among the firstin the world to provide a secure onlineproduct which is people and professionalfriendly, yet consumer driven. miVitalsengages consumers directly in managingand monitoring their health, whichpromotes health and wellness.The driving force behind miVitalsTechnology Pty Ltd and its ChiefExecutive Jude Foster says “ I wanted todevelop a system that promoted healthand wellness and didn’t define people bytheir illness.”In assessing the system, it becameclear to Epilepsy Australia that miVitalsoffers a unique tool that could greatlyassist people with epilepsy in their selfmanagement. Epilepsy Australia andmiVitals agreed to work together toraise awareness that for many peopleepilepsy is a chronic health conditionthat requires ongoing monitoring andthat this can be easily achieved by usingmiVitals.miVitals is easy to use and allows youto record your medical history, keeptrack of changes to medication/s andchanges to doses, add seizure activityand record notes for each event, attachtest and scan results, store, update andaccess your Epilepsy Management/Action Plan, along with any otherinformation you consider relevant.To help you get started there is aGetting started video which clearlydemonstrates how to complete eachcategory in the core health module.Simply entering your healthinformation or the information ofsomeone in your legal care on miVitalsmeans that you no longer have to rely onyour memory or the memory of otherswhen providing medical informationabout yourself or the person in your care.And if you find it difficultremembering appointment dates andtimes, you can schedule miVitals tosend you a free reminder by SMS text oremail.“We are delighted to partner withEpilepsy Australia and offer miVitals tomembers and the wider community atlarge, says Jude Foster, Chief Executive,miVitals Technology Pty Ltd.Epilepsy Australia CEO, RussellPollard, says “the advantages of thistechnology for people living with achronic health condition like epilepsymeans your records can be accessedanywhere, anytime via a computer,whether that be at your doctor’s surgery,hospital emergency departments, oranywhere in the world, ensuring thoseresponsible for treating you have yourmedical history and current treatmentregime at their fingertips.“At Epilepsy Australia we arecontinually on the lookout for resourcesthat enable people with epilepsy toactively participate in their healthmanagement and miVitals offers themost comprehensive online resourcecurrently available.“miVitals leads the way in consumerdriven health management and asEpilepsy Australia is Australia’s leadingconsumer-led epilepsy organization, itis most appropriate that we join forcesin promoting the active participation ofall consumers in their personal healthmanagement.”The Epilepsy Report invites readers toregister with miVitals (its free), test drivethe system and email your feedback todchapman@epilepsyaustralia.netRegistering with miVitalswww.mivitals.com may be the besthealth decision you ever make.26 THE EPILEPSY REPORT MAY 2008

An interview with Little PossWhere did you come from?I was created by Anne Little (author)and Denise McMahon (illustrator). Mybirth certificate shows I was born inNingaloo in Queensland.I hope you won’t take this personally,but I have heard people debating whatspecies you areDon’t worry, I’m used to that. I’ve beenmistaken for a bunny, a cat and a rat,but I’m actually a brushtail possum. Myname is Little Poss, poss being short forpossum.Best friend?Buck (mascot of the Brisbane Broncos),Ruby Rosella and Gertie Goanna (readthe books!!).Pet hate?People pulling my tail.As this is an interview for Australia’sleading epilepsy publication, TheEpilepsy Report, I guess we should stopbeating around the bush and ask youwhat’s your involvement with the epilepsycommunity?I have epilepsy. It started when I fellout of a tree and bumped my head. Myepilepsy journey has involved scans, andEEGs to find out what was going on, andthen medication for treatment. As longas I look after myself and keep doing theright thing, my seizures are pretty muchunder control. I became the star in AnneLittle’s children’s books – the originalbook (1994) and the sequel are all aboutme – and epilepsy. The publications wereso successful there’s now a Little PossClub for kids, a website, merchandise,and activities too. And this all startedbecause Epilepsy Queensland's researchidentified there was a need to teachchildren about epilepsy to combat thelifelong stigma and discrimination thatcan be such a hurdle.What’s been the highlight?I thought we’d never top winning aninternational award for being the world’sbest not for profit site for kids at a timewhen many places hadn’t even venturedinto cyberspace, but there have beenmore highlights since. I’ve met moreVIPs than you could poke a paw atand been to some amazing events. TheBrisbane Broncos featured prominentlylast year – they hosted my birthday party.I got to meet Queensland icon WayneBennett and many Broncos players. Ieven helped entertain the crowd at aSuncorp stadium match – performing fora thirty something thousand strong crowdis hard to beat. I love signing autographsalthough it can be a bit tricky with mypossum paws. I have to cope with theusual problems associated with stardom- I can’t walk down the street withoutpeople pointing and staring! and thenthere's the paparazzi…. Just joking. But Iwas on the television news the other week– when we were involved in a Channel9 – 4BC event for the great Wally Lewis.The way he’s brought epilepsy out of theshadows is amazing.However, when I kick back and reflect,the biggest buzz of all is that I’ve helpedthousands of children with epilepsy.I know I help them understand whatepilepsy is, how to help people withepilepsy, and that people with epilepsycan achieve great things. I get beautifulletters from members of the LittlePoss Club sharing their experiences,frustrations, and hopes.How do you get to be in the Club?You have to be 12 years old and under.Members of Epilepsy Queensland getfree Club membership, or you can takeout a special membership for $10 peryear.If you could have one wish, what wouldit be?Just one wish? That this year’s Little PossAppeal will make a gazillion dollars sothat I can help more children. And thatAustralian children with epilepsy get allthe help and support they need.For more information:Epilepsy QueenslandP O Box 1457, Coorparoo BC Q 4151phone 07 34355000www.littleposs.comphoto: Wally Lewis and Little PossTHE EPILEPSY REPORT MAY 200827

Who would make your financial, medical andlifestyle decisions if you couldn’t?Considerations for appointing aPower of attorneypower of attorney is a documentA that authorises another person tomake decisions on your behalf. This canassist you when you are temporarily orpermanently unable to manage your ownaffairs.It is worthwhile thinking aboutappointing an attorney now while youare still of sound mind and able to do so,particularly if you have been diagnosedwith a serious illness or are about tohave major surgery.You are the only person who has theright to make decisions about your assetsand if you are ever unable to manageyour own financial affairs – for whateverreason – your assets will be effectivelyfrozen unless you have previouslyauthorised another person to look afteryour finances on your behalf by signinga power of attorney, or another personapplies to the relevant board, courtor tribunal in your state for an orderallowing him or her to handle yourfinancial affairs.Appointing an attorney enables youto have someone you trust manage youraffairs and make decisions on yourbehalf should you be unable to do so.Choosing an attorneyThe only legal requirement is thatthe person you choose to act as yourattorney is over a certain age specified inthe legislation (e.g. 18 in Victoria) and ismentally competent. Often an attorneywill be a relative, close friend or anindependent person such as a lawyer,accountant or an employee of a trusteecompany.Keeping in mind the following points,choose a person who:• is trustworthy.• does not have a conflict of interestthat would make it impossible to actin your best interests.• knows you and understands yourwishes e.g. Is there any medicaltreatment you would not want? Somepeople write down their wishes toavoid conflict at a later date.• can do the job. The person youappoint to make financial decisionsmay not be the same person youwould want to make lifestyle ormedical decisions on your behalf.If your State/Territory legislationallows, you can choose more than oneattorney. While two attorneys mightdisagree about the decision to be made,two attorneys can be handy if one islikely to be away a lot or you don’tcompletely trust one to make decisionsalone.If, for some reason you are unhappywith your attorney, the power of attorneycan be cancelled and you can appointsomeone else.Types of powers of attorneyThere are different types of powersof attorney each designed to coverdifferent situations and different typesof decisions: temporary and permanentsituations, and personal, lifestyle,financial, legal and medical decisions.• General power of attorney• Enduring power of attorney(financial)• Enduring power of attorney (medical)(not in all States/Territories)• Enduring power of guardianshipWhich powers do I need?The powers you need will depend onyour wishes, and your personal, financialand family circumstances. Providedthe legal requirements are met, you canmake whichever powers you wish, andyou can appoint whoever you wish totake on those powers. For example, youmay choose to make only an enduringmedical power of attorney, or you maychoose to make all three enduringpowers of guardianship and attorney.Similarly, you may choose to appointonly one person for all the powers youmake, or you may choose differentpeople for each of the powers you make.In deciding which powers you want tomake, take note of the type of decisioncovered by each document.However, it is important to note thatthere is potential overlap between anenduring power of guardianship and anenduring power of attorney (medical) inrelation to medical decisions, becauseboth have the power to make medicaldecisions. However, in practice, aguardian can make medical decisionsonly if there is no medical attorney. Ifa medical attorney has been appointed,their decisions take precedence overthose of the guardian.General power of attorneyA general power of attorney is a legaldocument that authorises another personto manage your legal and financialaffairs on your behalf and can take effectfor a specified time only, or it can beindefinitely.The powers given to the attorneycan be as extensive or as restrictive asyou choose. For example, they can beresponsible for all your financial andlegal transactions including sellingyour house, or they can be responsiblefor only some, such as writing chequesand paying bills or signing a particulardocument.However if you become incapableof providing your attorney with clearinstructions this document automaticallybecomes invalid.28 THE EPILEPSY REPORT MAY 2008

Enduring power of attorney(financial)An enduring power of attorney(financial) is a legal document thatauthorises another person to makefinancial and legal decisions on yourbehalf. It takes effect from whatevertime you nominate: immediately, on aspecific date, or if you so specify, whenyou become mentally incapacitated.The powers given to your attorneycan be as extensive or as restrictiveas you choose. For example, they maybe responsible for all your financialand legal transactions, or they maybe responsible for only some, such aswriting cheques and paying bills.The enduring power of attorney(financial) can also be used fortemporary circumstances, such as a stayin hospital or a trip overseas. However,because it is enduring, it will alsoautomatically take effect if and whenyou become permanently incapacitated.Financial attorneys are legally obliged• to act in your best interests at alltimes• to keep their property separate fromyours, except when the property isjointly owned• to keep accurate records of alldealings and transactions• to follow any specific instructionsset out in the power of attorneydocument• to maintain confidentiality.You can specify the principles andphilosophy that should underpin theway your financial affairs are managed.However, remember that the morespecific and detailed your instructions,the harder the document is to prepareeffectively. If your instructions arecomplex, consider seeking help from alawyer.There may be occasions when yourfinancial attorney and your guardian(appointed under an enduring power ofguardianship) need to work together.In these circumstances, your financialattorney is responsible only for carryingout the financial transactions associatedwith implementing your guardian’sdecisions.If the power of attorney operates onlyin specific circumstances, your attorneymay need proof that the circumstanceshave occurred. For example, yourattorney may need to provide yourbank with a letter from your doctorstating that you are no longer capableof managing your affairs. However,privacy laws mean that you must havegiven your doctor permission to writesuch a letter beforehand. Clearly,this may not be possible if you areincapacitated. Therefore, be preparedfor such eventualities by obtaining anyauthorisations that may be needed at thesame time as you prepare the power ofattorney.Enduring power of attorney(medical treatment)An enduring power of attorney(medical treatment) is a legal documentthat authorises another person to makedecisions about your medical care andtreatment on your behalf and takes effectif and when you become incapacitated.The incapacity can be temporary, forexample, due to a loss of consciousnessafter a car accident, or permanent, forexample, due to dementia. However, itdoes not take effect if your decisionmakingcapacity has been reduced onlybriefly or mildly.Your attorney holds the same powers(rights) to accept, request or refusetreatment that you had previously and isobliged to make the same decisions theybelieve you would have made.Take the time to make sure yourproposed guardian is aware of yourpersonal views and desires, so theycan take account of them when makingdecisions on your behalf.An enduring power of attorney(medical treatment) does not permityour attorney to refuse you reasonablemedical procedures for the relief ofpain, suffering and discomfort or thereasonable provision of food and water.Your attorney can refuse other forms oftreatment however the decision may beoverridden by the relevant board, courtor tribunal in your state under certaincircumstances.Enduring power ofguardianshipAn enduring power of guardianship isa legal document that authorises anotherperson to make personal and lifestyle(non-financial) decisions on your behalf.The guardianship takes effect ifand when you become incapacitated.The incapacity can be temporary, forexample, due to injury, or permanent, forexample, due to intellectual disability.The powers given to your guardiancan be as extensive or as restrictiveas you choose. For example, they maybe responsible for all your lifestyledecisions, such as where you live, whomyou live with, where you work, whocan visit you, and what health care youreceive. Alternatively, they may beresponsible for only some decisions,such as whom you live with.Your guardian is obliged to act in yourbest interests. Take the time to makesure they are aware of your personalviews and desires, so they can takeaccount of them when making decisionson your behalf.If you don’t specify the powers youwish to confer on your guardian, theirpower automatically defaults to that ofa parent over their child. Such powersinclude making personal day-to-daydecisions as well as decisions aboutaccommodation, general lifestyle andemployment. You can also give theperson the power to make decisionsabout your medical treatment, exceptwhen an enduring power of attorney(medical) has also been signed.Your guardian cannot allow you to besterilised, have a pregnancy termination,or participate in medical research andorgan transplants. Permission for theseprocedures must be sought from therelevant board, court or tribunal in yourstate.The legal requirements for preparing apower of attorney are governed by State/Territory laws. For information andadvice about guardianship and powerof attorney matters please contact TheOffice of the Public Advocate in yourstate or territory.This article was adapted from informationprepared by John Berrill from Maurice BlackburnCashman for the Chronic Illness Alliance. TheEpilepsy Report kindly thanks the Chronic IllnessAlliance for permission to draw from this material.For more information about the Chronic IllnessAlliance visit www.chronicillness.org.auTHE EPILEPSY REPORT MAY 200829

Letters to theEditorAustralia 2020 Summit:no vision for people with epilepsy.On the weekend of 19 and 20 April 2008, one thousandpeople will gather in Canberra to contribute their views onthe future of Australia to public policy development by thenew Federal Government. The stream to discuss a long termnational health strategy contains many well-known namesin the health area, particularly those associated with ageing,disabilities, indigenous health, general practice and healthpromotion. There are also people well-known for their viewson reform of the health system. As well, there is at least oneelite sportsperson. His presence, it was explained was thatsport would play a role in the future to address the ‘obesityepidemic’ and its associated ‘lifestyle diseases’ of Type 2Diabetes, heart disease, cancers and musculoskeletal problems.There is no clearer an example of the continuingmarginalisation of people whose chronic diseases are notlife-style related, including people with Type 1 diabetes, cysticfibrosis, multiple sclerosis, thalassaemia, Crohn’s and colitisand of course, epilepsy.Recent research on the personal impact of epilepsydemonstrated that most people with epilepsy felt marginalisedbecause of their epilepsy by the wider community. Peoplewith epilepsy found it difficult to obtain employment, felt theirmobility problems were widely misunderstood, and were oftensocially isolated because many members of the communitydid not like to associate with people with epilepsy. Ironically,one of the outstanding examples of social exclusion camefrom rural people with epilepsy, who found they were oftenexcluded from participating in local sports activities, eventhough they felt up to the task. The language the participantsin this study used to describe their plight was the languageof social exclusion. They were ‘left out’, ‘avoided’, ‘shunned’and were social pariahs. These participants wanted to activelyaddress these problems; they were not passive victims and theycalled for campaigns on community awareness to dispel someof the community myths around epilepsy so they could take agreater role in their communities.The Chronic Illness Alliance has argued on behalf of allpeople with chronic illnesses that the impact of illness cannotbe managed by health care alone. Policy needs to include afocus on employment opportunities, income and relationships.It also needs to consider health reforms that deliver affordablemedicines, aids and equipment and affordable health care.The current composition of the Australia 2020 healthstream is unlikely to present an integrated framework of theseconcerns because of its focus on health promotion in ‘lifestyle’illnesses and because there are too few people there to promotethe needs of a substantial number of Australians with chronicillnesses that cannot be prevented through exercise and diet.If people with epilepsy as well as other people with seriouschronic illnesses that are not amenable to behavioural change,are to receive any benefits from new public policy includingthat of social inclusion, their voices must be represented in thediscussions that will drive those policy developments.Christine WalkerChronic Illness Alliance[Christine was unsuccessful in her nomination to Australia2020.]&seizuresepilepsyanswering your frequentlyasked questions&seizureFIRST AIDSeizures &EpilepsyDeveloped and published byEpilepsy Australia, Seizures &Epilepsy answers many of theconcerns raised at diagnosis.20 pp. DL sizeA free community educationresource.Available from your EpilepsyAustralia affiliate or emailepilepsy@epilepsyaustralia.net.Amazing numbers100 billion: the number of neurons inthe human brain. Additional supporting tissuebrings the total cell count to 1 trillion125 million: the number of visual receptors ineach eye6000: the number of genes out of a total of 30,000in humans that are expressed only in the brain.750 millilitres: the amount of blood flow throughthe brain every minute; when parts of the brain areactive, their blood supply increases.12: the number of major nerves that carry sensoryor motor signals to and from the brain100% of our brain that we use. It’s a longdiscreditedmyth that we take advantage of only10%75% of the brain that consists of water - roughlyproportional to a banana or the surface of the earth2% the weight of the brain proportional to that ofthe adult body30 THE EPILEPSY REPORT MAY 2008

face2faceJacinta Cummins joined Epilepsy ACT in 2000 as ExecutiveDirector and is the current Chair of the Joint EpilepsyCouncil of Australia [JECA]. Jacinta’s achievements duringthis time include delivering the nationally accredited coursein epilepsy training, developed by Victoria University incollaboration with the Foundation of Victoria, throughoutthe ACT, developing an award winning informationresource for indigenous Australians, and raising the bar oncommunity service delivery within the ACT.Jacinta works tirelessly for the Australian epilepsy movement. As Chair of JECA and lobbyist,the recent announcement of the Parliamentary Friends of Epilepsy group is evidence of herdetermination to give epilepsy a voice in the halls of power.“Married with two adults sons, I havelived in the ACT for most of my adultyears. I grew up with three sisterson a farm in the middle of nowherethat didn’t have electricity until I wasabout 10 years old. I went to a primaryschool that had 18 kids in a goodyear and was in a class of my own. Imoved to Melbourne for my secondaryeducation and during this time I didvolunteer work at Kew Cottages, aresidential service for the intellectuallydisabled. I guess you could say myinterest in disability stemmed fromthere.In 1988 I was employed as a Homeand Community Care Case Managerfor the Aged, Younger People withDisabilities, people of Non EnglishSpeaking Backgrounds, Aboriginaland Torres Strait Islanders and theirCarers. The ethos of the service wasto achieve excellence in the provisionof services to prevent inappropriateadmission to institutions within aHCAA Case Management Framework.Since joining Epilepsy ACT I havebeen privileged to speak on behalfof the epilepsy community at bothFederal and Territory level. Suchadvocacy has included input in gettingthe question on seizures included inthe Child Disability Assessment Tool,sitting on the committee for the ACTthat produced the report Raising theStandard. A Manual to Guide QualityImprovement in the ACT CommunityService Organization. 2002, andsitting on the Access Equity andFunding Committee for DisabilityServices. I am currently a memberof the National Disability ServicesCommittee.At Epilepsy ACT our mission is toensure that epilepsy information isaccessible to all within our communityand with this in mind we undertooka program to develop appropriateliterature and counselling servicesfor our local indigenous community.In consultation with local groupsa culturally sensitive EpilepsyInformation & Resource Kit forAboriginal People was produced. Inaddition, an indigenous person wasemployed and trained as an epilepsyeducator and counsellor to work withinthe community. This program wasawarded the Pfizer Foundation Awardfrom America.With our continuing focus oncommunity education and training,I completed Cert. IV in WorkplaceAssessment and Training enablingme to deliver an accredited trainingprogram developed by VictoriaUniversity and the EpilepsyFoundation of Victoria. (CHCCS6C“Assess and deliver services toclients with complex needs” fromthe Community Services TrainingPackage CHC02). Delivery of thisprogram has further enhanced thestanding of Epilepsy ACT withinthe disability sector. In addition,professional qualifications in SolutionOriented Counselling have given depthto our counselling services.In 2003 Epilepsy ACT became aninaugural member of The JointEpilepsy Council of Australia (JECA)and I have held the Chair since 2006.During this time JECA has conductedAustralia’s largest nationwide surveyof people with epilepsy and madethe first agreed submission to theFederal Government from the epilepsymovement in the last 20 years.After Russell Pollard and I lobbiedfor the submission, several politiciansincluding Labor’s Jill Hall MHR andthe National’s Mark Coulten MHRhave taken the lead in forming theParliamentary Friends of Epilepsygroup. This can only augur well for theepilepsy movement in Australia.I am proud to be part of the JECA andEpilepsy Australia team as we are allworking together to achieve the bestoutcomes for people with epilepsy.“THE EPILEPSY REPORT MAY 200831

Sparks of Creativity Art Exhibition5 - 7 November 2008 Sydney, AustraliaShockwaveRachna Pettygrove32 THE EPILEPSY REPORT MAY 2008