Luke Quinlivan & Riley Elson - Epilepsy Australia

Issue No.1, 2012
Luke Quinlivan
& Riley Elson
Raising awareness!
Inside
• Nathan Jolliffe: Stands up for epilepsy • RED update
• Outstanding person with epilepsy 2012: Martin Raffaele
•
•
•
•
Celebrating our young Purple Day heroes Telehealth
Tim Kennerway: a son’s tribute EFV forges partnership

WELCOME
Welcome to the latest edition of The Epilepsy Report.
Our national awareness campaign challenging public perception
and stigma of epilepsy was launched at the beginning of March,
national epilepsy awareness month, and featured Australian water
polo goal keeper, Luke Quinlivan, himself a person with epilepsy,
gaining extensive media coverage. We greatly appreciate Luke’s
commitment to improving public perception of epilepsy. We thank
Janssen-Cilag Pty Ltd, UCB Australia Pty Ltd, Sanofi Australia &
New Zealand, and GlaxoSmithKline Australia, for their generous
support for this campaign.
Also contributing to raising awareness of epilepsy and for the
work that we do throughout Australia is model and reality TV
winner, Nathan Jolliffe. Through his appearance on Celebrity
Apprentice Australia, and subsequent media opportunities where
he has taken every opportunity to speak out about epilepsy,
Nathan has contributed greatly to our awareness campaign. Also
in this issue we meet a group of amazing kids who have shown by
example that epilepsy is not something to be embarrassed about.
Proud to be Purple Day Heroes they have become beacons for a
future free of stigma.
We congratulate Martin Raffaele, Australia’s 2012 recipient of
the Outstanding Person with Epilepsy Award. Martin’s inspiring
story celebrates how achievement and courage walk side by side
with epilepsy.
Social research informs government and policy makers and
ultimately makes a difference in the lives of all living with epilepsy.
We encourage everyone living with epilepsy to join the Australian
Research Epilepsy Register, participate in the Longitudinal Study
of the impact of epilepsy, and help change the future.
Editor
Denise Chapman
Contributing Editors
Robert Cole, Dr Robert Mittan
Dr Frank Vajda,
Dr Christine Walker
Contributors
Pauline Brockett, Peter Jean,
Janita Keating, Tim Kennaway,
Dr Rosey Panelli,
Hemav Rajbhandari
Photography
Dreamstime.com,
Gary Schafer, Janita Keating,
Peter Oliver, Brydon Dunstan
Print Pegasus Print Group
ISSN 1836-747X
The Epilepsy Report is published
by Epilepsy Australia Ltd
818 Burke Road
Camberwell VIC 3124 Australia
Tel: 02 9674 9966
epilepsy@epilepsyaustralia.net
cover: Luke Quinlivan & Riley Elson
Views expressed and information
included herein do not necessarily
reflect official policies of Epilepsy
Australia. Articles covering
medical aspects are not intended
to replace competent medical, or
other health professional advice.
All content is copyright and may
not be reproduced without prior
permission. Contributions are
welcome. The Editor reserves the
right to edit content for reasons of
space or clarity.
Epilepsy Australia Affiliates:
Epilepsy ACT
Epilepsy Queensland Inc
Epilepsy Association of SA/NT
Epilepsy Association of Tasmania
Epilepsy Foundation of Victoria
Epilepsy Association of WA
National Epilepsy Helpline
1300 852 853
CONTENTS
PLUS
4
12
11
14
2012 Outstanding Person with Epilepsy Award 3
Telehealth – bridging miles 4
Reducing Epilepsy Death Project update 5
Professor Frank Vajda on use of AEDs 8
Jacinta Cummins and Epilepsy ACT 10
Standing up for epilepsy 12
– Nathan Jolliffe 12
– Luke Quinlivan 13
Young heroes work for change 14
Remembering lives lost 16
EFV and Nepal Epilepsy Association partnership 17
A son’s tribute – Tim Kennaway 18
Australian Epilepsy Research Register 20
Report: Wave 2 of the Longitudinal Study 21
Consumer updates 22
Face2Face with Lisa Rath 23
www.facebook.com/epilepsyaustralia
www.epilepsyaustralia.net
Martin Raffaele
Australia’s recipient of the IBE’s ‘Outstanding
Person with Epilepsy Award’ for 2012
The Joint Epilepsy Council of
Australia is pleased to announce the
Australian recipient of the Outstanding
Person with Epilepsy Award for 2012 is
Martin Raffaele.
This award, presented by the
International Bureau for Epilepsy (IBE)
every two years at the Asian & Oceanian
Epilepsy Congress, recognises:
• Contribution to community service
for people with epilepsy;
• Longstanding support for people with
epilepsy;
• Longstanding advocate for people
with epilepsy (community, disability,
politics, media);
• Individual achievement that
inspires others (personal, professional,
educational, sporting, creative)
regardless of their epilepsy;
• Distinguished service to a local
epilepsy support organization.
From the nominations received, the
Joint Epilepsy Council of Australia,
chose Martin Raffaele of New South
Wales to receive this award.
Martin has lived with seizures
for most of his life, although his
epilepsy, caused by complicated febrile
convulsions, was not properly diagnosed
until his early 20s, when after years of
auras, he started to experience complex
partial seizures.
A promising professional/opera singer
in receipt of many scholarships from
the age of 15, he found the scholarships
discontinued not long after he began
experiencing regular seizures cutting
short a promising career. Martin tried
many jobs but was unable to keep them
due to the frequency of his seizures and
was forced to accept a disability pension.
Not wanting to allow his epilepsy
to take control, in 1998 at 26, he began
tertiary studies, however the frequency
of his seizures led to him undergo
partial temporal lobectomy in 1998.
Six months later he recommenced his
studies at Sydney University however
his seizures returned and in October
2000, he underwent a second partial
temporal lobectomy. Through two
operations and periods of recovery, it
took Martin 7 ½ years to complete his
Bachelor of Arts (Sociology) degree in
2005. He has since completed a MPhil
(2009) investigating the misdiagnosis
of Childhood Absence Epilepsy as
Attention Deficit Hyperactivity Disorder
(ADHD), and in 2010 commenced his
PhD thesis: Subjective Well-Being (SWB)
in men with neurosurgery for Adult
Onset Epileptic Seizures (AOES).*
In August 2010 Martin was the
recipient of an Australian Postgraduate
Award. This Scholarship is presented
to students with exceptional research
potential.
During his time studying, Martin has
conducted a support group for men and
worked as a volunteer counsellor. He
has presented his research at various
conferences held in Australia and in
2011 Martin volunteered to speak about
his epilepsy and experience for the
Epilepsy Australia Keeping Epilepsy
in Mind PR Campaign where he was
interviewed on live radio, and by
journalists for print media. Martin has
been a willing, unofficial ambassador for
Epilepsy Australia since 2008, speaking
about his experience with epilepsy.
Martin continues to have seizures; his
operations while successful in reducing
the frequency of his seizures has not
controlled them and he remains on a
disability pension.
Determined not to let his epilepsy
control him, Martin takes risks everyday
living in the inner-city of Sydney,
using public transport, both trains and
buses, to travel alone to university to
pursue his studies. Martin believes that
there is a need to better understand the
impact of epilepsy and surgery from
a male perspective and how men go
about re-establishing their lives and
place in society. Martin battles with the
unpredictability of seizures on a daily
basis.
Accompanying this award was a small
travel bursary to travel to Manila to
accept the award. Martin courageously
travelled to Manila on his own knowing
PROFESSOR INGRID SCHEFFER
Mr Robert Cole, Co-Chair, 9th AOEC
congratulating Martin Raffaele on his award.
he could have a seizure at any time. He
proudly accepted his award from Mr
Mike Glynn, President of IBE, at the
opening ceremony of the 9th Asian &
Oceanian Epilepsy Congress.
The 2012 recipients from across the
regions awarded in Manila were:
• Ms Yashoda Wakankar, India
• Mr Baldwin Chua Kho, Philippines
• Mr Purevjav Tsogtsakhan, Mongolia
• Mr Fai Ming Hung, Hong Kong
• Ms Yung-Chih Chen, Taiwan
• Mr Hongquan Li, China
Martin also had a poster on his
research study accepted for this
scientific meeting.
From all of us at Epilepsy Australia,
we congratulate Martin on this welldeserved
award.
The University of Sydney
Investigate the life of men
following surgery for adult
onset epileptic seizures*
Martin is currently recruiting participants
for this study which aims to develop
stronger knowledge of the circumstances
that men often encounter in all social
environments following surgery to reduce
adult onset epileptic seizures. Eligible
participants will be interviewed relating to
the period of emotional recovery following
surgery.
You may be eligible if you are:
• a male over 21 years,
• developed seizures after the age of 18
years has undergone epilepsy surgery
• understand and speak English
If you are interested in taking part please
contact Martin Raffaele on
W: (02) 9351 6371 M: 0422 582 902
Email: mraf4695@uni.sydney.edu.au
2 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 3

Telehealth - bridging miles
Telehealth consultations provide an
opportunity for patients to meet
with their specialist health providers
using video technology and from 1 July
2011 the Australian Government began
to provide Medicare and Department
of Veteran Affairs (DVA) rebates and
incentives to promote this style of
service provision in areas outside the
designated inner metropolitan sector.
Patients who are residents at aged care
facilities, or who are receiving health
services at an eligible Aboriginal
Medical Service qualify to receive
funded Telehealth services anywhere
in Australia. Consultations can be
provided by specialists, consultant
physicians and psychiatrists. Rebates
also enable general practitioners (GPs),
other medical practitioners, nurse
practitioners, midwives, Aboriginal
health workers and practice nurses to
provide clinical assistance to the patient
during the specialist video consultation
(1,2,3).
The potential benefits to patients who
can access their specialist via Telehealth
consultations are immediately apparent.
Time lost from work due to long distance
travel, the costs of travel, and sometimes
the expense of accommodation can
be greatly reduced. For patients with
by Rosey Panelli
epilepsy, reducing the need to travel
far from home is especially helpful as
they are frequently subject to periods of
time when driving is prohibited. If they
cannot drive themselves, and if private
transport is the only way to reach their
specialist service provider, the patient
is dependent on the availability and
generosity of family and friends. Even
where public transport is available there
can be concerns about the possibility
of a seizure on public transport while
travelling long distances.
Epilepsy affects approximately 1%
of the population and the number of
physicians who specialise in epilepsy
care is relatively small. Most are
located in the major Australian cities in
association with epilepsy specialist care
centres and where patients cannot travel
easily their choice of service provider is
limited. There can be pressure to select
specialist care based on locality rather
than expertise in epilepsy, but having
access to Telehealth can facilitate more
equitable and appropriate access to care.
Easy access to an epilepsy specialist
through Telehealth has given great
peace of mind to epilepsy patient
Margot Green, whose seizures started
late in life when she was into her 70s.
Living in the rural setting of Seymour
It’s 3.30 AM when Sarah Reichelt
sets off to the Royal Children’s
Hospital for her son’s appointment.
Sarah faces a five hour drive from Nhill
to Melbourne and her two children
are more likely to sleep in the car
if the family leaves before dawn. In
any case, Ethan needs to have an
early blood sample collected before
he takes his morning medication.
So at 8 AM, by the time the family
reaches Melbourne, the children are
hungry and Sarah has to deal with the
children’s frustrations while navigating
the peak hour traffic.
Their first stop is the pathology
laboratory where Ethan has blood
taken. Once this is over they can
finally sit down for breakfast, much
to Sarah’s relief, before the round of
medical appointments begins. After
such a stressful day of tests and
consultations, Sarah is too tired to
make the return trip on the same day
so she has a suitcase packed and the
family stays the night at the hospital
before returning home the next day.
Sometimes the appointment schedule
means that big sister Ella has to miss
pre-school.
It’s little wonder that Sarah is
very enthusiastic about Telehealth
consultations which now allow Ethan
to have alternate appointments with
his paediatric neurologist using the
computer at home. ‘Halving the
number of visits to Melbourne is such
a bonus’ says Sarah. ‘The trips are
totally exhausting for the three of us
and I often end up with a migraine the
day after I come home’.
Victoria, although she is an active
woman and still able to drive, she is
not confident to tackle the journey to
Melbourne by car and is wary of having
seizures on the train or moving about
in the city. She feels fortunate that her
epileptologist Professor Terence O’Brien
is pleased to consult with her using video
conferencing. Professor O’Brien has
found that Telehealth offers an excellent
resource for improving service delivery to
people with epilepsy. ‘Sometimes I have
patients who drive six hours to see me for
just fifteen minutes and then they turn
around and drive home again. I know this
is a huge effort for them and it concerns
me, but I can’t go to them’ he says. ‘For
specialists I think it will reduce some of
the barriers they might feel to reviewing
patients regularly, because it removes
some of the logistical issues.’ Despite
his enthusiasm for the concept Professor
O’Brien still requests patients to visit
personally for their first appointment,
preferring face to face meetings for the
initial assessment, and electing to utilise
Telehealth for review visits. ‘Telehealth is
not the only solution to providing quality
epilepsy care but it is a very useful tool in
the toolbox as we work to tailor the best
possible individual management’ he says.
As Telehealth options begin to
permeate day-to day epilepsy care
Professor O’Brien is not alone in his
concern to balance the convenience of
video conferencing with the benefits of
face to face meetings. Maintaining good
personal interaction is an important
aspect of the therapeutic relationship
and some health practitioners are
concerned that patients might consider
the video screen to be creating a barrier
to communication, especially if they are
older and unfamiliar with the technology
However, satisfied patients like Margot
Green suggest that the benefits are
strong enough to outweigh any negative
factors. Margot is very comfortable with
the technology and finds no difficulty
communicating via the video link. ‘I
can see my doctor’s smiling face and he
hears me loud and clear so we can chat
away just as easily as if we were in the
same room,’ she says. The enthusiastic
response to telemedicine by both Margot
and Sarah reflects research findings which
indicate that Telehealth is positively
regarded by Australian patients. Research
also suggests that when considering the
full range of Telehealth services operating
throughout the country, although there
are some potential ethical, medical-legal
and governance problems which have
arisen they appear to be have been easily
managed (4).
Telehealth consultations depend on
the enthusiastic cooperation of service
providers at both ends of the video link,
and Margot Green is fortunate that her
local GP at the Seymour Medical Clinic
has been quick to embrace the Telehealth
concept. Figures indicate that only about
4500 video consultations involving
GPs occurred
during the first
nine months of
the program (5),
although the
Government has
an expectation
that 495,000 Telehealth consultations
will have occurred by July 2015 (6).
Some GPs see benefits in consultations
which include both GP and specialist.
Patients with a poor memory for example
may appreciate direct input into the
consultation by their GP and where
patients have a complex condition,
direct communication between the
specialist and the GP can facilitate rapid
management decisions which include
patient participation. However, in cases
where GP participation is not necessary,
and where the patient or specialist prefers
to have a private meeting, Medicare
rebates are flexible enough to allow
consultations to be coordinated by the
practice nurse.
The slow uptake of telemedicine,
despite the healthy rebates, may reflect
a lack of clear guidance regarding
the program in its early stages (7,8).
The Australian Medical Board did not
release guidelines for technology-based
consultations until January 2012 (9)
and the Royal Australian College of
General Practice (RACGP) released its
addendum to the RACGP Standards
for General Practices (4th edition),
proposing standards for general practices
offering video consultations, in October
2011 (10 ) There are plans to review
the RACGP addendum in October
Telehealth consultation with Professor Terry O’Brien (above) and Dr Rob North with patient Margot Green.
4 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 5

2012 and feedback can be sent to the
RACGP. Telehealth resources, including
a patient information sheet, are also
now available from the RACGP (11).
Nevertheless when it comes to selecting
the equipment appropriate to the task,
guidance from all sources has been
obscure. Directives highlight the need
for a secure link, but no one option has
been recommended. For the general
practice manager at Seymour Medical
Clinic, Gay Mitchell, the hardware
choices presented no problems. We
use our laptop with a webcam and
move it wherever we need it’ says Gay.
‘However, when we were considering the
software options we found that although
some programs like Skype were not
recommended because of theoretical
security risks, there are doctors who do
use it. We decided to pay a fee instead
and install the Telstra option which
guaranteed a secure service, and was a
national option that we expected might
become generally adopted. However,
every doctor we speak to seems to
have selected a different system so
there is still a great deal of confusion
surrounding the process. It is something
we must check with every specialist
we add to our Telehealth list.’ At the
Royal Children’s Hospital in Melbourne
families who link in to their specialists
from their own home, rather than from
a GP clinic, are provided with the Go
ToMeeting software by the hospital
free of charge. All patients linked to the
hospital have their appointments booked
into the family’s computer calendar
by the hospital and pop up reminder
messages ensure that nobody forgets
a consultation. More information is
available from the hospital’s website
(12).
Epilepsy patients are enjoying the
benefits of Telehealth all over Australia,
especially in larger states where the
distance to services can be as much as a
thousand kilometres. In Queensland Dr
Anita Cairns, a paediatric neurologist
does weekly Telehealth clinics from the
Royal Children’s Hospital to towns such
as Mackay or Gladstone. ‘It works well
for most epilepsy patients, allowing me
to modify medications and doses without
the long trip to Brisbane’ she says. ‘I find
it helpful to have a local doctor present
so that they are aware of the changes
I have made to the patient’s care.
Sometimes the consultation can provide
enough guidance to the local team in
terms of investigations and management
that the patient does not need to come
to Brisbane. This is an advantage where
children have associated behavioural
problems, or physical disabilities and air
travel is especially challenging for the
family’.
For clinicians with an interest in
Telehealth and a desire to stay abreast
with up to date information, the
Australian College of Rural and Remote
Medicine (ACRRM) has established a
specific Telehealth web page (13). The
online community has been created
for health and medical professionals
(generalists and specialists) who are
interested in the use of Telehealth
to improve access to care for rural,
Aboriginal and aged care patients. The
site offers a range of resources including
a provider directory, a technology
directory and regular updates to links
and current Telehealth news.
Meanwhile at home in Nhill Sarah
Reichelt needs every bit of energy
and support she can muster to care for
Ethan’s needs. A vet by profession she
has given up work to care for her son. At
the age of two and after four gruelling
rounds of neurosurgery, Ethan still
suffers from seizures. ‘On a good day
he might have four says Sarah, but on
a bad day it can be sixteen. He is on a
trial drug now and he needs very careful
monitoring. I am so thankful that one
in every two meetings with Ethan’s
specialist can be done at our kitchen
bench.’ Ethan’s epilepsy specialist,
Dr Simon Harvey is also pleased with
Telehealth. ‘The technology does not
have to be complicated or expensive’,
he says. ‘A simple USB microphone
and camera plugged into the desktop,
or a laptop with built in camera, plus a
reasonable internet connection, serves
the purpose. The concept is well suited
to epilepsy management, where there is
often limited need to examine patients
and main requirement is to discuss
issues such as seizures, medication side
effects, behaviour, and development.
I also use video meetings to follow-up
with interstate patients and to discuss
patients with my interstate colleagues,
though the Medicare Telehealth funding
does not apply in this setting’.
From the patient perspective it would
appear that Telehealth has received a
resounding vote of approval, although
the uptake by health practitioners has
so far been modest. As information
about the service spreads through the
community it seems likely that there
will be a strong patient demand for
rapid development of this new health
care alternative. The Epilepsy Report
welcomes comments on this topic
from both health care providers and
consumers.
1. Australian Government Department of
Health and Ageing. MBS Online: Telehealth –
modernising medicare by providing rebates for
online consultations. [cited 2012 May 3] Available
from: http://www.mbsonline.gov.au/internet/
mbsonline/publishing.nsf/Content/mbsonlinetelehealth-landing.htm
2. Australian Association of Consultant
Physicians. Telehealth.[cited 2012 May3] Available
from: http://www.consultantphysicians.com.au/
telehealth
3. Bruce P. Telehealth (powerpoint
presentation)2012 [cited 2012 May3] Available
from: http://www.gpnsw.com.au/www.gpnsw.
com.au/__data/assets/pdf_file/0016/4084/120313_
pres_telehealth.pdf
4. Wade V, Eliott JA, Hiller JE. A qualitative
study of ethical, medico-legal and clinical
governance matters in Australian telehealth
services. Journal of Telemedicine and Telecare.
2012; 18:109-14.
5. Australian Government Medicare Australia.
Medicare Australia Statistics- Medicare item
reports. [cited 2012 May3] Available from https://
www.medicareaustralia.gov.au/statistics/mbs_
item.shtml
6. Australian Government Department of
Broadband, Communications and the Digital
Economy. NBN Benefits - Health and Aged Care.
[cited 2012 May3] Available from: http://www.
nbn.gov.au/nbn-benefits/health-and-aged-care/
7. Hillam H. Bridging the distance. Australian
Rural Doctor. 2012;Feb:16-19. Available from
http://www.australiandoctor.com.au/rural-doctor/
features/bridging-the-distance
8. O’Brien M. Jumping on the telehealth
bandwagon. Medical Observer. 2012; Mar:20-21
Available from http://www.medicalobserver.com.
au/news/jumping-on-the-telehealth-bandwagon
9. Medical Board of Australia. New guidelines
released –Guidelines for technology-based
consultations. 2012. [cited 2010 May 3]. Available
from: http://www.medicalboard.gov.au/
News/160112-New-Guidelines-Released.aspx
10. Royal Australian College of General
Practitioners. Implementation guidelines for video
consultations in general practice: a telehealth
initiative (version 2).2011. Available from:
http://www.racgp.org.au/Content/
NavigationMenu/PracticeSupport/Telehealth/
TelehealthImplementationGuide.pdf
11. Royal Australian College of General
Practitioners. Telehealth factsheet. [cited 2012
May 3]. Available from: http://www.racgp.org.au/
telehealth
12. The Royal Children’s Hospital Melbourne.
Primary Care Liaison – Telehealth. [cited 2012
May 3]. Available from: http://www.rch.org.au/
kidsconnect/services.cfmdoc_id=15364
13. Australian College of Rural and Remote
Medicine. eHealth. [cited 2012 May 3]. Available
from www.ehealth.acrrm.org.au
Reducing Epilepsy
Death (RED) Project
The Reducing Epilepsy Deaths support for this important activity.
(RED) project, established to The online survey of GPs in Australia
investigate a range of issues associated and New Zealand proved very useful
with epilepsy-related death in Australia and the data collected is contributing to
continues to progress in 2012.
the development of quality support for
One key area of activity is to examine general practice in Australia. During
the experiences of those bereaved by the survey four random incentive prizes
epilepsy. A pilot study has now been were offered thanks to the generous
completed and Dr Michelle Bellon of support of 3M Medical. One GP from
Flinders University has joined with Dr New Zealand and three GPs from
Rosey Panelli to take this important Australia were lucky enough to win a
work to the next stage. The data will be 3M Littmann Electronic Stethoscope
gathered using an online questionnaire. Model 3200 (www.littmann.com.au).
The study has recently received ethics Epilepsy Australia thanks all GPs who
approval and details about how to took the time to assist us with the survey
participate in the survey will soon be and congratulates Dr Linda Mellor
available on the Epilepsy Australia (Wellington, NZ), Dr Bradley Forssman
website.
(NSW), Dr Gary Bourke (Bendigo), and
As the RED project has progressed an Dr Peter Davies (Launceston).
extensive bibliography has been created The work of Epilepsy Australia
and this will soon become available to improve awareness and action on
online for those who have access to epilepsy-related death continues to
Endnote web. Whilst the other aspects receive international acknowledgement.
of the project including the study of In June Dr Rosey Panelli, coordinator
the National Coroner’s Information of the RED project attended the first
System (NCIS) continue to move Partners Against Mortality in Epilepsy
forward, progress has been restricted Conference (PAME) in the US. She
by lack of funding. Several applications presented on education as a prevention
have been put forward to government tool.
and philanthropic institutions seeking
Epilepsy & Society Symposium, AOEC, Manila
SUDEP was one of four topics
for the Epilepsy & Society
Symposium at the 9th AOEC held in
Manila in March 2012. Dr Robert Alava
from the Philippines gave a very clear
presentation on What is SUDEP Denise
Chapman (pictured above) reviewed
the rise of global advocacy of SUDEP
over the past 15 years: the milestones
achieved, and the challenges that still
lay ahead. Her participation was by
invitation.
With heavy heart...
In the December 2011 issue of The
Epilepsy Report, the Oultram family
was featured in the story ‘Happy
Endings’, where we reported the
safe arrival of baby Oscar, after mum
Katherine’s seizure prone pregnancy.
I regret to advise our readers that
Katherine, 27, passed away on
Saturday, 10 March 2012, from SUDEP.
Our deepest sympathies are with her
husband Drew and baby Oscar, and
their families, as they come to terms
with their tragic loss.
Epilepsy Australia’s
SUDEP Research &
Education Fund
In 2009 Epilepsy Australia established
the SUDEP Education & Research
Fund. The purpose of this Fund is to
advance our knowledge of epilepsyrelated
death through undertaking or
facilitating research and to provide
community education on epilepsyrelated
risks.
This Fund receives donations from
families, friends and colleagues who
have lost a loved one to epilepsy, and
philanthropic donations dedicated to
epilepsy research.
To date this Fund has supported
the work of the Reducing Epilepsy
Death (RED) Project and funded the
local printing and distribution of the
publication Sudden Unexpected Death
in Epilepsy: continuing the global
conversation.
Donations to this fund can be made
online at www.epilepsyaustralia.net or
for more information, email sudep@
epilepsyaustralia.net
6 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 7

There are two aspects of antiepileptic
therapy that need emphasis
and increased recognition – the
individualisation of treatment, and dose
issues.
Reviewing our practice in the use
of antiepileptic drugs (AEDs) in the
treatment of epilepsy over the past
decades, these points need to be
highlighted, and although not new, they
have not embraced by all practitioners.
Drugs, that have a low therapeutic
index, a feature characteristic of AEDs,
imply that the dose required to exert a
beneficial effect, i.e. to control seizures,
is not very different from doses that
cause toxicity.
Hence we need to be aware that
unnecessarily high doses of AEDs are
potentially dangerous. This is true not
only because it results in severe toxicity,
but also because even mild drug related
symptoms may make patients abandon
medications, becoming non-compliant
and thus defeating the purpose of
prescribing drugs at all.
If a drug is generally well tolerated,
such as valproate (Epilim), it has been
accepted for decades, both by specialists
and general practitioners, to prescribe
it for adult patients in a standard dose
of 500mg twice or three times a day,
and maintain that dose for an indefinite
period.
We now know, from numerous
publications analysing results of
exposure, that this dosage is associated
with an increase in the incidence of birth
defects. 1
We have learnt that physical
Have we used
antiepileptic
drugs incorrectly
Professor Frank Vajda
malformations are dose-related and that
the incidence of these malformations can
be lowered significantly by using lower
doses of this most effective drug.
We have learnt also that adverse
effects on a high dose of valproate result
in cognitive side effects. Intellectual
development in young children is also
at risk when high doses of valproate
are administered and may possibly
be prevented by limiting the babies’
exposure to drugs during pregnancy. It is
worth noting that, although not proven,
the possibility exists that cognitive
adverse effects on development are
influenced not only by exposure in
the first trimester of pregnancy but
throughout gestation. 2
It is remarkable that all other AEDrelated
teratogenicity, i.e. physical
malformations, are dose-related, except
perhaps in the case of the new, so called
second generation, AEDs where the
Australian Pregnancy Register database
is not extensive enough to make
authoritative comments. 3
Until early 1990, carbamazepine
(Tegretol) was the main first line
medication for the control of partial
epilepsy. It was used to the limit of
tolerance and often beyond it. It was
not uncommon for it to be prescribed in
relatively high doses of 600 to 800 mg
per day, after the initial visit.
We now know that starting with a
low dose is preferable for a variety of
reasons. It minimises the incidence of
side effects and permits gradual getting
used to the somnolence associated with
this drug and, with improved and new
technology, antigen testing is available
to minimise the rash associated with
carbamazepine. The incidence of this
rash is high particularly in patients with
Asian background, and they should
not be prescribed carbamazepine,
unless tested. A positive HLA -b-1502
test correlates also with a potential
to develop a skin rash after taking
other AEDs, such as lamotrigine and
valproate. 4
As regards other AEDs, such
as phenytoin (Dilantin) and the
barbiturates, the neurological side effects
are clearly dose-related.
Somnolence, nystagmus, and
ataxia are loosely related to plasma
concentrations. Kutt defined this
relationship as clearcut, although this
applies only reasonably closely in the
case of phenytoin, and plasma levels
serve merely as an adjunct to treatment. 5
The new AEDs, such as levetiracetam
(Keppra) and topiramate (Topamax)
also require slow, low dose introduction.
Keppra may be effective at doses lower
than conventionally recommended, even
below 1000 mg per day for an adult.
Certainly the adverse cognitive speech
and emotional adverse effects appear to
be dose-related and readily reversed on
dose reduction.
Topiramate was originally trialled at
higher doses in the range of 1000 mg per
day, before clinical practice has shown
it to be effective often at doses a quarter
of that magnitude. The recommendation
for slow introduction and gradual dose
increase was available from the time of
its regulatory approval. It worked well
in practice. It has been recognised since
that occasionally a single introductory
dose of topiramate may be intolerable –
an “idiosyncratic “ side effect.
Lamotrigine is another example of
the benefit of low dose introduction.
Initially, in the mid 90’s it has been
used in the conventional regimen, and
prescribed in standard dose of 300-400
mg per day. A flurry of reports of severe
skin eruptions followed. Erythema
multiforme, Stevens Johnson syndrome,
and toxic epidermolysis associated with
lamotrigine may be life-threatening.
This problem was overcome with a
regimen of starting at a low dose, a
fraction of the eventual total prescribed.
The doses were to be raised gradually
over two months. This minimised, and
virtually eliminated, this serious side
effect.
Lamotrigine has a major virtue. It is
the safest AED in pregnancy. But it is
difficult to use, not as effective as other
drugs and because of its slow rate of
introduction it is too late to switch to
lamotrigine in pregnancy to provide
effective therapy in the first trimester.
Lamotrigine illustrates the second
problem of needing to individualise
treatment. Because it is induced by
phenytoin, which uses the same route
liver enzyme system of elimination, it
must be prescribed in a higher dose in
the presence of parathyroid hormone
(PTH) Conversely it must be prescribed
at a lower dose in presence of valproate.
The rash is also more likely to occur in
presence of valproate.
On the other hand the efficacy of these
drugs in combination, valproate and
lamotrigine, is enhanced in polytherapy
– a favourable feature.
In pregnancy however lamotrigine
elimination is enhanced by the sex
hormones, so that doses of lamotrigine
must be increased every 13 weeks, and
returned to baseline doses, after the baby
is born. 6
The oral contraceptive pill also
affects lamotrigine concentration, which
complicates the fact that each individual
has a characteristic therapeutic window,
or range, for lamotrigine and population
derived therapeutic ranges are a spurious
concept and do not help management.
Individualisation of doses on the basis
of the above is not sufficient.
Account must be taken of the type of
epilepsy, the epilepsy syndrome, past
history of response to an individual
drug, the age and gender of the patient,
renal function, concomitant medications
prescribed, for example, for cardiac
disease, or intolerance to a known class
of drugs.
Individualisation according to age is
well established. The above list is only
a partial compilation of possibilities that
affect the decision on how to prescribe
AEDs, and to make allowances for
individual variations in drug response.
Patients with well diagnosed epilepsy,
especially those with convulsive
seizures must be treated, in order to
reduce the risk of sudden unexpected
death in epilepsy (SUDEP), which is the
ultimate harm that may befall a patient
with epilepsy and their families. 7
In order to maintain a good quality
of life on antiepileptic drug treatment,
individualisation of therapy and
awareness of dose-related complications
must always be kept in focus.
References
1. Tomson T, Battino D, Bonizzoni E, Craig
J, Lindhout D, Sabers A, Perucca E, Vajda F;
for the EURAP study group. Dose-dependent
risk of malformations with antiepileptic drugs:
an analysis of data from the EURAP epilepsy
and pregnancy registry. Lancet Neurol.
2011;10(7):609–617. Epub 2011 Jun 5.
2. Meador KJ, Baker GA, Browning N,
Clayton-Smith J, Combs-Cantrell DT, Cohen M,
Kalayjian LA, Kanner A, Liporace JD, Pennell
PB, Privitera M, Loring DW; NEAD Study Group.
Cognitive function at 3 years of age after fetal
exposure to antiepileptic drugs. N Engl J Med.
2009;360(16):1597–605.
3. Vajda FJE, Graham J, Roten A, Lander CM,
O’Brien , TJ, Eadie M. Teratogenicity of the newer
antiepileptic drugs – the Australian
experience. Journal of Clinical Neuroscience,
2012 19, Issue (1): 57–59
4. Man CB, Kwan P, Baum L, Yu E, Lau KM,
Cheng AS, Ng MH. Association between HLA-
B*1502 Allele and Antiepileptic Drug-Induced
Cutaneous Reactions in Han Chinese. Epilepsia
2007;48(5):1015–1018.
5. Kutt H, McDowell F. Management of Epilepsy
With Diphenylhydantoin SodiumDosage
Regulation for Problem Patients JAMA.
1968;203(11):969–972.
6. Sabers A, Öhman I, Christensen J, and
Tomson T. Oral contraceptives reduce lamotrigine
plasma levels Neurology 2003 61 (4) 570–575
7. Panelli R Neurology Asia 2011; 16 (Supplement
1): 51–54 SUDEP counselling: How and when
Professor Frank Vajda AM
Epilepsy Australia congratulates
Professor Vajda on being awarded the
Member of the Order of Australia (AM)
for service to neuropharmacology,
particularly in the speciality of epilepsy,
as a clinician and researcher, to medical
education, and to the Jewish community,
in the Australia Day Honours list for 2012.
Professor Vajda’s commitment in
serving the broader epilepsy community
is demonstrated by his uninterrupted
service of some 19 years as a dedicated
voluntary member of the National Epilepsy
Association of Australia’s Committee of
Management from 1983–2000, and his
voluntary role as contributing editor of The
Epilepsy Report since 2003.
With a passion for informing and
improving the lives of Australians with
epilepsy, Professor Vajda continues
to author articles for consumers on
medications and treatment for epilepsy,
on managing pregnancy in women with
epilepsy, antiepileptic drugs, and the issue
of generics.
He has long advocated for improved
quality of life and better treatment for
people with epilepsy. Nothing better
demonstrates his commitment to
improving the lives of future Australians
than his establishment of the Australian
Antiepileptic Drug Registry for Women
in Pregnancy in 2000. Operating now
for just over ten years, this Register
continues to publish valuable data on the
effects of antiepileptic medications taken
during pregnancy: often easing concern
of prospective mothers. The work of this
Registry has also gone a long way in
dispelling the myths that a woman with
epilepsy could not have children, nor be a
good mother.
Professor Vajda’s commitment to
an informed epilepsy community and
his generosity of time and knowledge
is greatly appreciated by the Australia
epilepsy community.
We congratulate him on this recognition
of his life’s work.
8 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 9

Seeking to raise the
profile of epilepsy in the
ACT, Peter Jean, from
the Canberra Times,
met with Epilepsy ACT
executive director
Jacinta Cummins,
to find out more about
epilepsy and Epilepsy
ACT.
Formed in 1982,
Epilepsy ACT provides
services for the 5000
Canberrans living with
epilepsy, their families
and the community
in the ACT and
surrounding areas.
Services offered
include counselling and
support, community
education, advocacy,
and training in the
management of
epilepsy.
For more information
about Epilepsy ACT go to
www.epilepsyact.org.au
or call 02 6287 4555
Raising the profile of
epilepsy in the ACT
It wasn’t really an orthodox
use of work time, but
Jacinta Cummins was
planning to sneak out of her
office for an hour or so last
week to help an Epilepsy
ACT member finish off a
mammoth houseclean.
Some of my things aren’t
quite ‘normal stuff’ but I
think they’re needed for
people they just give them
that kickstart,” the Epilepsy
ACT executive director
explains.
The man Jacinta was going
to help had been unwell for
decades before medication
changes led to a dramatic
reduction in his epileptic
seizures and an end to a
prescription drug-induced
fogginess.
“Until 17 months ago he
had been living in a foggy
world and he finally found a
neurologist who’d listen to
him.
“The neurologist took him
off a lot of meds and it’s
amazing, this last 17 months
he’s started becoming his
own person.
“He’s never been able to
work, he’s never been able to
drive because of his seizures.
He even found it difficult to
walk his kids to school.”
The man may soon be able
to apply for a driver’s licence
and look for a part-time job.
He has taken advantage of
his new energy by throwing
himself into housecleaning,
cooking and completing
parenting courses.
“He’s really, really trying
to come back into the
community again,” Jaincta
says.
Jacinta’s office is a former
science laboratory on the first
floor of the old school now
called the Grant Cameron
Community Centre in Holder.
She is joined every day by
volunteer Elizabeth O’Brien
who has dedicated herself to
Epilepsy ACT after retiring
from a career in special
education and also works
with a core group of about 30
other volunteers.
From a desk by the window
Jacinta offers information and
advice to anybody who has
been told by their doctor that
they have joined about 5000
Canberrans with one of the
neurological conditions in the
epilepsy “family”.
Calm and well-spoken, she
has no desire to be recognised
publicly for her work and
suggests O’Brien or Epilepsy
ACT chairman Richard
Eccles might be better
subjects for a newspaper
profile.
But she agreed to be
interviewed to help raise
the profile of epilepsy,
a condition she believes
receives little public or
Photo: Gary Schafer
government attention despite
the fact it affects 230,000
Australians and caused the
deaths of 143 children over a
10-year period.
Married with two adult
sons, Jacinta has spent most
of her adult life working in
the community
sector and in
libraries.
She moved to
Canberra from
Victoria 27
years ago and
was undertaking
community
work with senior
citizens until
being offered the
position as Epilepsy ACT’s
only paid staff member 12
years ago.
She is a past chair
of the Joint Epilepsy
Council of Australia, was
pivotal in establishing the
Parliamentary Friends of
Epilepsy, and wrote a national
report on epilepsy and a
guide for workers and their
employers on the condition.
Jacinta says it can be
frightening for people to
discover they have epilepsy
and many newly diagnosed
sufferers are children and
adolescents.
“It’s random and some of
them will grow out of it. But
then there’s higher incidence
as you get to the older age
group because of strokes and
their impact on the brain,”
she says.
“A lot of kids seem to
develop it when they’re
starting school or uni. It’s not
a lifelong
illness and
sometimes
the sooner
you can get
people on
medication,
the sooner
they’ll come
off it.”
Jacinta
says the
onset of epileptic seizures can
be devastating for a man who
is the only breadwinner for a
young family.
“If he’s a tradesman, then
his job’s gone, then the
family’s gone, the house is
gone. Nothing left,” she says.
“You’ve got to get in
straight away, you’ve got
to put in the supports. You
need to be there to help and
support him and then get him
back into the workforce.”
Jacinta says a social stigma
about epilepsy can place
people’s jobs at risk, even
if their symptoms do not
prevent them from safely
working.
You’ve got to get in
straight away, you’ve
got to put in the
supports. You need to
be there to help and
support him and then
get him back into the
workforce.
You have people who
don’t disclose that they have
epilepsy and then when they
do people panic and then say,
We don’t want someone with
epilepsy here.’
“ And then you get the
person who’s been in the job
for years and years and has
been through about six bosses
and the seventh boss comes
along and says ‘Oh, epilepsy
desk duty, no work for you.’
They don’t take the time to
find out and they’ve got no
idea.”
Jacinta says Epilepsy
ACT will offer to meet with
employers or refer people
to lawyers. People often
require advice on dealing
with Centrelink or with ACT
Housing. You’ve got to get
in straight away, you’ve got
to put in the supports. You
need to be there to help and
support him and then get him
back into the workforce.
She tells the story of a man
with epilepsy who managed
to bring the condition under
control, stop suffering from
seizures and hold down a job.
He was living in a onebedroom
flat with his
partner when the partner fell
pregnant.
The man had been prone
to seizures when overtired
and Jacinta warned him
that he would need to move
into a bigger property when
the baby was born. But a
shortage of properties meant
public housing authorities
were unable to help.
When the baby was born he
didn’t get enough sleep and
he started back with seizures.
“So we took it all the way
up through Housing and got
to the last point and then
they gave them a house that
afternoon.
They got him into the house
and now because everything’s
in order, and he gets enough
sleep, he’s buying his own
house, holding down a job.
“Sometimes simple
interventions can stop bad
things from happening.”
Jacinta clearly loves her
job.
“I think you get addicted to
community work,” she says.
As long I think I’m doing
something right (which I
think I am) and as long as
there’s a new challenge in
front that I think I can meet,
then I’ll keep on going.”
Reprinted with permission
Canberra Times.
........................................................................................................................................................................................................................................
Remembering Adam
The Adam Fry
Memorial football
match, auspiced by
Tuggeranong United
Football Club, took
place again this year
in March. Launching
the new football
season, the day raised
awareness of epilepsy
and funds for Epilepsy
ACT. Congratulations
to State League
Division 10 for taking
out the Adam Fry
Memorial Shield for
2012.
10 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 11

Nathan Jolliffe
Standing up for epilepsy
Nathan Jolliffe, won the hearts of all
Australians living with epilepsy,
when he chose to represent Epilepsy
Australia in the latest series of
Celebrity Apprentice Australia.
By talking frankly about the
impact epilepsy had on him as
a child, and the social anxiety
that still lingers, Nathan brought
epilepsy to a national audience,
giving great encouragement to all
people living with epilepsy.
A confident, articulate and
laid-back lad, it was Nathan’s
determination, intelligence and
mettle that saw him, along with
best mate Tyler, win the Amazing
Race Australia in 2011, and
allowed him to overcome the big
personalities on Celebrity Apprentice
Australia raising $30,000 for Epilepsy
Australia along the way.
Yet Nathan reveals a vulnerable side
when he talks about having seizures as
a child.
“I was very embarrassed about it, and
I think there are a lot of kids who are,”
says Nathan. “When I had a seizure it
would happen at night, about half an
hour after going to bed. It definitely
stopped me from doing a lot of things,
because I was frightened of having a
seizure. Sleepovers would be fine until
it was time to go to bed and then I
would be so scared I’d have a seizure,
I would have to call my parents to
come and get me. School camps were
another experienced missed because
I was embarrassed and didn’t want
them calling my name to come and
take my medication.”
Diagnosed at the age of six
with Benign Rolandic Epilepsy,
an epilepsy of childhood that is
generally outgrown by the teenage
years, Nathan had around a dozen
seizures (even while taking
antiepileptic medication) until he
was 13, when the seizures stopped.
Now 26, the memory of seizures
remains.
‘It’s hard to explain what it feels like
when a seizure comes on – everyone is
different – but mine affected my throat,
and felt like I was going to swallow my
tongue, then the seizure would take me
away,’ explains Nathan.
Nathan also speaks candidly about
the hint of anxiety that sets in when he
thinks about seizures today. “It’s the
most horrible thing in the world when
you have lost complete control of your
body.
“After competing in The Amazing
Race Australia I learnt a lot about
myself. The things I put my body
through – hunger, sleep-deprivation,
stress, pushing myself to the limit – all
the things that could trigger a seizure
and I thought if ever I am going to have
a seizure again, it would have happened
then and it didn’t.
“And even though I have lived seizurefree
for the past 13 years, it is always
in the back of my mind. I suffer from
a bit of social anxiety now, but believe
it’s mind over matter, and I work at self
management techniques to overcome it.”
In choosing to represent Epilepsy
Australia Nathan says cheekily, “It was
a ‘no-brainer’. Because of my childhood
experience with epilepsy, I wanted to
reach out to kids living with epilepsy
today and remind them that they can still
achieve goals in life. What better way to
do this than to get national recognition
of epilepsy and Epilepsy Australia on
free to air television.”
Nathan made it to the final, where he
competed against Ian ‘Dicko’ Dickson
for the title of Celebrity Apprentice
Australia 2012. While Dicko won the
final challenge and the winner’s prize of
$100,000, he generously shared the prize
with Nathan, commenting ‘after the race
Nathan ran, he deserved half of it!’
With Dicko’s generous gift of $50,000,
Nathan’s appearance on Celebrity
Apprentice Australia raised an amazing
$80,000 for Epilepsy Australia!
When water polo champion
and Olympic hopeful Luke
Quinlivan had a seizure in the diving
pool at Challenge Stadium in Perth in
November 2010, it was a very ‘scary’
reminder that he had epilepsy.
As his teammates watched in
amusement, thinking he was mucking
around, Luke, in a ‘strange’ stretching
pose’ was seizing on the bottom of the
pool, seconds away from drowning.
Realizing something was wrong, his
cousin Nick O’Halloran and best mate
Mitchal Ainsworth quickly swam down
to Luke, who had been under water
for about 60 seconds, and heaved their
100kg teammate out of the pool.
“When I woke up there were people
looking over me and a pool attendant
pushing an oxygen mask on to my face
and people pushing me to sit down,”
remembers Luke when asked about the
event today.
“I didn’t know where I was or what
was going on, so my natural reaction
was to try to fight people off. It felt like I
was being attacked.”
Taken to hospital for observation,
Luke made a full recovery. Luke blames
the seizure on missing his usual morning
dose of medication for epilepsy.
Luke was diagnosed with epilepsy in
2001 at the age of 15.
“I know on a conscious level that I
have epilepsy and asthma and no hearing
in my left ear, and that I’m short-sighted,
but on a subconscious level I don’t
accept that I have (any problems) and I
just get on with it,” says Luke.
“That’s a good thing in the sense
that I’ve never been afraid . . . but it’s
also been my downfall because there
are moments when I have been lax and
forgotten to take my medication.
“This last seizure (in November 2010)
was a harsh reminder that I can’t be
complacent.”
And this is the message Luke wants
to bring to all young people living with
epilepsy – don’t be complacent with your
medication.
Luke Quinlivan
With his eyes set on a place in the
national team for the London Olympics,
Luke is training hard. But he also
finds time to help raise awareness
of epilepsy and dispel some of the
myths and stigma surrounding
epilepsy by working with Suresh
Rajan, CEO Epilepsy WA speaking
out about epilepsy, and teaming up
with Epilepsy Australia to feature
in our latest community service
announcement (CSA), Do your
best. In this CSA Luke talks about
working hard to do his best in the
hope of representing Australia in
the 2012 Olympics, whilst also
addressing the prejudice that
people with epilepsy may face
from others. The CSA, first
aired on national TV during
March, National Epilepsy
Awareness Month, resonated
with many Australians living
with epilepsy, and gave hope
and encouragement to others
not to give up on their dreams.
While Luke admits there has
been setbacks, his determination
to pursue his ambitions in spite
of his condition is proof that
people living with epilepsy can
go on to achieve great things,
overcoming the prejudices
towards their condition from the
wider public along the way.
For those who have not seen
the CSA, it can be viewed at
EpilepsyTVAustralia on
Youtube.com
Luke has also
participated in the ILAE’s
Stand Up For Epilepsy
Campaign, with Epilepsy
Australia submitting a
photo of Luke and young
Riley Elson from WA to
be part of photographic
exhibition at the 10th
European Congress on
Epileptology in London,
September 2012.
12 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 13

Purple Day 2012 – young heroes from the lead library the way
Following in Cassidy’s
footsteps...
Cassidy Megan started Purple Day
in 2008 because she wanted to tell
everyone about epilepsy, especially
that all seizures are not the same
and that people with epilepsy are
ordinary people just like everyone
else.
She also wanted kids with epilepsy
to know that they are not alone.
Now in its 4th year, Purple Day
has become a global event, raising
awareness of epilepsy in 64
countries over seven continents
(yes, even in Ross Island,
Antarctica!)
Cassidy’s dream proves the ‘power
of one’, and our young Purple Day
Heroes, across the country, have
shown us how each and every one
of them have made a difference.
Riley Elson
Western Australia
Being diagnosed with epilepsy on your
10th birthday isn’t the best birthday
present, but Riley took it in his stride.
Taking up the challenge to be a Purple
Day Hero, Riley, 11, began speaking
out that it’s OK to have epilepsy and
his message soon caught the attention
of local media with interviews on TV
and newspaper. With the support of his
family, community and school, Riley
became Epilepsy Australia’s highest
fundraiser, raising $5815.10. As a thank
you, a meeting and photo shoot with
Luke Quinlivan, Australian water polo
goalkeeper and epilepsy spokesperson,
was arranged for the ILAE Stand Up For
Epilepsy photographic exhibition Excited
to meet his hero, Luke surprised Riley by
giving him his Australian team jacket!
Mackenzie Beames
Queensland
Growing up in the small mining town of
Tieri, Central Queensland, Mackenzie,
12, is passionate about sport. A ‘mad
keen’ footballer, she plays touch football,
and is a Brisbane Broncos fanatic. Being
diagnosed with epilepsy in 2010, hasn’t
stopped Mackenzie from pursuing her
love of sport nor does she see epilepsy
as a barrier to sporting achievement or
her future dreams. Embracing Purple
Day, Mackenzie, with support from her
home town and her school community,
was the highest fundraiser for Epilepsy
Queensland, raising the outstanding
amount of $13,400. A surprise meeting
with her hero, the ‘King’, Wally
Lewis, was arranged, with photos also
submitted to the ILAE Stand Up For
Epilepsy photographic exhibition.
celebrating around the country . . .
Makayla and Blake Fittler
New South Wales
Wanting to raise funds for epilepsy
research so their one-year-old sister,
Katie, could be ‘fixed’, Makayla, 7,
and Blake, 5, joined our band of Purple
Day Heroes and set a fundraising target
of $500 for Epilepsy Australia. Both
Makayla and Katie have an inherited
form of epilepsy from their father, Scott,
and while Makayla has been seizurefree
for the last three years, little Katie,
hasn’t been so lucky with her seizures
proving more difficult to control.
Living in Lithgow NSW, Makalya and
Blake were interviewed for their local
newspaper about their wish for Katie,
and, with support from mum, Julie,
their school, and their local community,
exceeded their wildest dreams raising
the amazing sum of $1661.40.
Chris Buttner and Lachlan
Bischof-Foster, Victoria
Helping students and teachers better
understand epilepsy and seizures,
Chris, 10, and Lachlan, 13, speak out
about their experience with epilepsy in
the Epilepsy Foundation of Victoria’s
Epilepsy Smart Schools training DVD.
In talking about their individual type
of epilepsy and the way they manage it,
and their desire to treated the same as
other kids, the boys reveal a confidence
and maturity beyond their years. EFV,
with corporate partner Melbourne
Storm Rugby League Club, launched
Purple Day at the Storm vs Roosters
NRL match at AAMI Stadium. These
inspirational lads had the unforgettable
experience of running through the
banner with Captain Cameron Smith,
and onto the ground in front of a
crowd of 12,000, as well as momento
photos taken with Frank Barrett, GM
Communications and the team.
Meg Logan
New South Wales
Meg, 11, first learned about Purple
Day from our TV advert last year and
researched it on the internet. Inspired
by Cassidy, Meg decided that she, too,
could make a difference. With the
support of her school, Hunter School
of Performing Arts in Newcastle, Meg
organised a Purple Day fundraiser to sell
the dozens of purple cupcakes and stress
balls she made with the help of her mum.
Meg was excited to raise $102.70 for
Epilepsy Australia, but what made her
happier was another student, who was
embarrassed about having epilepsy and
had kept it a secret, joined in and helped
her, asking people to support them both.
As Meg said “he wasn’t embarrassed any
more.” Meg loves dancing and does not
let epilepsy stand in her way, recently
participating in Star Struck, where 3000
public school children performed at the
Newcastle Entertainment Centre.
Pembroke Public School, Victoria; Purple Picnic in Marshmallow Park with Trigger the Tiger, The Epilepsy Centre mascot, South Australia.
Purple Procession, South Bank Brisbane with Wally Lewis fronting Channel 9’s live news broadcast, Queensland; Kilmartin’s Pharmacy staff, Seymour, Victoria.
14 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 15

sharing training expertise
Photo: Janita Keating
EFV celebrates 6th Memorial Service
Heralded by the peel of the church
bell rung by Jeremy Maxwell, 160
people met at St Marks, Camberwell on
the 22nd April this year to celebrate the
Epilepsy Foundation of Victoria’s Sixth
Memorial Service.
Every two years we meet to remember
those who have died through epilepsy
and to offer support to those who are
trying to live with their loss.
Following a welcome by the CEO
Graeme Shears, the reading of a message
of unity from Epilepsy Bereaved UK and
a poem from Philip Brady, the service
proceeded with moving reflections from
David McLachlan and Janine Mifsud,
members of families who have lost a
daughter to Sudden Unexplained Death
in Epilepsy (SUDEP).
Poems, Letter from Heaven and
Masques were presented by Gillian
Davies and Wayne Pfeiffer.
Music is always an important
feature of our service and this year the
Canterbury Chorale presented beautiful,
pure renditions of Faure’s Sanctus and
Smile, words by Michael Leunig and
music by Kate Sadler, their Musical
Director. Kate’s voice also resonated in
a soaring solo of Love lifts us up where
we belong.
A most moving part of the ceremony
was the lighting of memorial candles, by
families and friends, during which the
106 names of those being remembered
were read by Rev Greg Allinson.
Dr Rosey Panelli, in her address A
line in the sand spoke of the historical
progress of the acknowledgement of
the incidence of SUDEP. She told of the
encouraging worldwide attention being
given to reducing epilepsy deaths, at the
same time reminding us that primarily,
research and funding is needed to
achieve better control of seizures in
order to fulfill this aim.
The service closed with the uplifting
hymn Morning has Broken, words by the
poet Eleanor Farjean, and was followed
by afternoon tea at the Foundation where
photos, stories and other memorabilia
of loved ones, sent by families, were
displayed.
During the afternoon tea we joined
together to drink the traditional toast to
those who live on in our memories.
Those attending the service, as always,
expressed their appreciation of the
opportunity to remember their loved
ones, amongst others who understand
their loss, for it makes them feel less
alone.
In the words of John Cafarella who
was unable to attend this year, I believe
that this event goes a long way in
helping to come to terms with losing a
loved one to this disease, as you can see
that others are as lost as you are and are
hurting as you do.
Pauline Brockett
Nepal is a beautiful country, famous
for its stunning Himalaya, rich
culture and generous hospitality. In a
country that is only 65% the size of
Victoria, its population is greater than
all of Australia! Yet, there are less
than twenty neurologists in the whole
country. A significant percentage of
people live in poverty, and most people
are dependent on agriculture for a living.
For those living with epilepsy, access
to specialist support, medication and
community understanding of this highly
stigmatised condition, life can be very
isolating and overwhelming.
A partnership between the Epilepsy
Foundation of Victoria (EFV) and the
Nepal Epilepsy Association (NEA) has
recently seen Janita Keating, Education
and Training Manager, EFV and Hemav
Rajbhandari, Vice President NEA
develop and deliver epilepsy education
to teachers and health workers in the
remote village of Nangi in the Myagdi
District of West Nepal.
The training focused on emphasising
that epilepsy is a medical condition
that should be treated by a doctor (not a
sharman or witch doctor); that epilepsy
is not contagious; that when correctly
diagnosed and treated by the appropriate
medications seizures can in 70% of
cases be well controlled; seizures are not
the result of punishment or bad gods;
and how to appropriately support the
person during and after a seizure.
Five health workers and thirty
teachers attended the sessions, with
one health worker walking nine hours
by foot to attend! Pictorial resources
were distributed to the health workers
to better enable them to continue
the educative process with newly
diagnosed villagers. Linkages with NEA
were established, so that any future
questions or referrals can be addressed
via telemedicine communications.
Feedback from health workers and
teachers was very positive.
The experience has highlighted
how beneficial partnerships between
international epilepsy organisations can
be for both countries. Future joint EFV
and NEA outreach epilepsy clinics in
West Nepal are planned for September
2013.
Janita Keating, EFV and
Hemav Rajbhandari,
Vice President NEA, are
working together to bring
epilepsy education to
remote villages in West
Nepal
16 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 17

Living with the shadow
of epilepsy
Tim Kennaway
My Shadow is the story my father
Tom Kennaway (1936–2011)
wrote for me when I was seven – to
explain his philosophy for coping with
his tonic-clonic (grand mal) epilepsy
and life – that “…you must always get
straight back up on to your horse after it
throws you.”
This book follows the trials of a young
cowboy (jackaroo) who faces several
setbacks on his way to breaking in and
taming his beautiful mare – “Shadow”.
Through dogged persistence and a
“never give up” attitude the jackaroo
triumphs in the end, as my father
eventually did over his “shadow” –
epilepsy. Tom based My Shadow on
the two wonderful years he spent
jackarooing at Brewon Station, near
Walgett in NSW, where he became great
friends with a spirited horse named
“Shadow”.
It was only after my father’s death
from cancer in April last year, that it
became possible for me to consider
publishing My Shadow. Dad and our
family kept his epilepsy a secret all
his life and we never openly discussed
it until after his death, not because of
feelings of shame, but mainly due to the
negative impact it would have had on his
employment. Tom also didn’t want to be
treated differently from other people and
he wanted to achieve things on his own
merit with no special considerations.
The first time I ever told an “outsider”
about dad’s epilepsy was when our
family was making Tom’s funeral
arrangements. The funeral director
suggested that we put green ribbon
around the nine red roses (representing
Tom’s immediate family) that we
placed on dad’s coffin before his private
cremation. I said proudly, “No, we want
purple! My dad had epilepsy.” The
purple ribbons were a secret tribute from
those “in the know!”
Dad experienced his first seizure in his
mid-teens for no particular reason. He
then had many “fits” over the next eight
years.
Throughout this period he desperately
tried to get his epilepsy under control
by adjusting his medication. As a result
of his determination and the kind
people who helped him along the way,
Tom managed to finish his Leaving
Certificate at The Scots College,
Sydney, and to graduate with a Diploma
of Agriculture from Wagga Agricultural
College. Having an education was
important to Tom. In fact, he sat his
final agriculture exam in the afternoon,
following a seizure earlier that day.
After college Tom worked at Brewon
Station, where his epilepsy remained
out of control. He had lots of seizures
at Brewon, some while horse riding. On
one occasion Tom fell from his saddle
head first into a water trough.
Tom loved his time in the outback,
but he moved back to Newcastle to
chase better career prospects. He
tried various jobs, but found it hard to
maintain regular employment due to
the unpredictable nature of his disease.
Dad resigned on his first day as a doorto-door
light salesman, after he had a
seizure on a customer’s doorstep.
Eventually, Tom regulated his epilepsy
and his job opportunities improved as
a result. At twenty-seven he got a lucky
break and he became an assistant land
valuer with the NSW Valuer General’s
Department. He worked for over
thirty-five years with the VG’s, steadily
progressing up the Public Service ladder.
By the time he retired, he was in charge
of the South Western Region of NSW; a
geographical area more than twice the
size of Belgium.
Tom was thankful for the opportunity
the Department gave him to have a
Tom Kennaway
rewarding career and lifestyle, so he
dedicated himself wholeheartedly to
public service. He always lived in fear
that the Department would find out
about his epilepsy one day, but they
never did.
Tom was happily married to Heather
since 1963. Before dad proposed to
mum he told her about his epilepsy
and she accepted Tom for the man he
was. They had three children – Tim,
Robert and Leah. They also had three
grandchildren: Ebony-Rose, Jack and
Guy Rudder.
Dad was not a morning person and
followed a ritual that kept him relatively
seizure free for all my lifetime (I was
born in 1964), except for one occasion,
when we lived in Goulburn, NSW.
With encouragement from a local
doctor dad got himself off nearly all his
epilepsy medications. These two and a
half years were a “Renaissance period”
for dad, “the fuzzy cloud” lifted and his
full intellect was unleashed at work and
socially and his coordination improved
much to my dismay because he started
thrashing me at squash!
Then one day he was plunged back
into “the Dark Ages!” He was in charge
of the local amateur athletics carnival
and he had too much on his plate.
He didn’t sleep well the night before,
skipped breakfast and hadn’t gone to
the toilet and then rushed to the track.
Tom had a seizure in the middle of the
ground, in front of everyone, including
my sister who was twelve at the time.
Mum was in the canteen and heard that
a man had gone down, straight away
she knew it was dad and she dropped a
peanut butter jar, saying, “Oh no don’t
tell me it’s happened!” I was at home
studying for the HSC, which I was
about to start sitting for the next day.
Mum said, “It’s happened!” She didn’t
have to say any more, I knew what she
meant and I drove out immediately to the
ground to pick her up.
Dad had been taken away in an
ambulance and went into Intensive Care.
(He never went back to the ground or the
athletics club again). A quick thinking
bystander who was a doctor squashed
crowd rumours that dad was having “a
fit” by making out that he was having a
heart attack instead. Mum was relieved
that the doctor was aware of the stigma
and the ramifications that epilepsy would
have had on dad’s employment.
Tom was very sick and was in hospital
for over a week. Mum tried to keep the
house calm because I was doing the
HSC. I visited dad at the hospital after
completing my first exam – English.
English was my best subject – I needed
to get a good mark to do journalism. I
showed dad the paper and I was pleased
until he noticed that I’d misread the
instructions and totally missed a section!
I could have appealed I guess because I
was worried about my father in the ICU
but what would have been the use He
had a heart attack, right! We were both
disappointed, but we had to keep going.
I had another two weeks of exams to
go and Tom had to go back on to heavy
epilepsy medications for the rest of his
life – no use crying over spilt milk!
It was sad for our family to see “the
fuzzy cloud” descend on dad again.
(My Aunty said that when Tom had his
first seizure when he was a boarder at
Scots College, his father rushed from
Newcastle to see him and the doctor
told him it was a shame because dad “...
would have been a genius!”). Tom had an
extremely high IQ, but it sometimes took
a long time for him to get his answers
out – particularly in the mornings.
He’d um and ah, and when people had
thought he’d finished he’d come up with
an addendum! His mind was constantly
fighting against the drugs that aimed to
slow him down! He scribbled down notes
and made drawings and doodles to get
his thoughts together. In his later years
Tom was worried about his memory
and he gathered and kept detailed notes
on people, friends and trivia so that the
120 or so Christmas cards he sent every
year were engaging and interesting. He
was also fairly short tempered in the
mornings, particularly before he took his
meds and we learnt to walk on eggshells
as a result.
It was a relief for us that dad did
not have another fit again. We were
particularly glad that he did not have a
seizure in the last six months of his life
when he battled an aggressive form of
prostate cancer. We were happy that the
doctor renewed his driver’s licence five
weeks before he died (even though he
never drove again) because that would
have really crushed him.
By living closely with a person with
epilepsy family members often develop a
“sixth sense” and know when that person
is feeling out of sorts or vulnerable to
having a seizure. They tend to discretely
take over a duty or responsibility usually
without being asked until the person is
feeling better and back on deck.
The families of people living with
epilepsy are often resilient people
knowing how to go with the flow –
patience is a virtue. Eventually you get
there in the end, and dad did many things
he wasn’t supposed to do! The children
of adults who have epilepsy learn to take
on responsibilities early in life, and are
often self-sufficient and sensitive to the
needs of others, which are fantastic traits
that more people in this world should
have!
I decided to illustrate and publish My
Shadow in the hope that it would help
and inspire other children of parents who
have epilepsy, just like it helped me all
those years ago!
My Shadow
an inspiring book for children of
parents with epilepsy
Tom Kennaway
Illustrations by Tim Kennaway
2012
ISBN: 978-1-4710-7039-6
Copies are available for purchase
from the Epilepsy Foundation of
Victoria’s online shop for $9.00 +
$3.00 p&h.
18 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 19
Tim Kennaway

AUSTRALIAN EPILEPSY
RESEARCH REGISTER
The Australian Epilepsy Research Register is a database of people who have
epilepsy and who have given us permission to communicate with them for the
• Please contact:
WHAT IS THE REGISTER
purpose of social research.
WHO CAN JOIN
Any person over the age of 18 with epilepsy or seizure disorder, or their carer.
WHY SHOULD I JOIN
You will help us to target the right services for people living with epilepsy.
You will contribute to a study conducted over an extended period of time of the
impact of living with epilepsy that will help shape future public policy.
You will receive regular updates on research findings.
HOW DO I JOIN
Australian Epilepsy Research Register, 818 Burke Road, Camberwell Victoria 3124
Phone +61 (0)3 9805 9111 Fax +61 (0)3 9882 7159 Helpline 1300 852 853
E-mail research@epilepsy.asn.au Web www.epilepsyaustralia.net
The Longitudinal Study
Report on Wave 2
Australia’s first longitudinal study
of epilepsy looking at needs,
perceptions and experiences of people
living with epilepsy is underway. This
project has been made possible through
the innovative direction undertaken by
the Epilepsy Foundation of Victoria
in 2006 in establishing a psychosocial
research program aimed at providing
an evidence base to argue for improved
policies and services at the government
and community levels. The latest
report on Wave 2 Out of the Shadows:
needs, perceptions and experiences of
people living with epilepsy in Australia
was released in April and is available
at http://www.epilepsyaustralia.
net/Current_Issues/Research/The_
Longitudinal_Study.aspx
This report has produced some
interesting data.
The Wave 2 survey of 2010 had 343
from 621 research register participants
(response rate 55%):
• Wave 2 results demonstrate lower
education levels amongst older people
and higher school retention amongst
the younger; however lower than
average employment and possibly
underemployment across all ages.
Education has not led to employment
amongst these respondents with only
16% of the total number having full-time
jobs even though the majority of them
were of working age.
• Income is also generally very low
with 49% living below the current
Henderson poverty line. Some people
reported not having the money for
shopping, for local travel and sometimes
for their medicines.
• Wave 2 also explored seizure activity
and levels of seizure control. This group
has less seizure control than reported in
the literature with only 33% reporting no
seizures over twelve months. There are
no data to analyse severity of seizures,
however. Injuries and hospitalisations
are high amongst this group. This is
an important finding which deserves
further exploration in the next Wave.
The analysis found that even those
with good seizure control had been
hospitalised for some injuries due to
seizures.
• People with epilepsy reported
experiencing varying levels of
stigmatising behaviour. While many felt
they had been fairly treated and had not
suffered any discrimination the numbers
who reported unfair treatment were still
high at 45%. Some of this was in the
workplace while broader community
attitudes are still a problem.
• A substantial proportion (32%) of
people with epilepsy reported that they
had experienced a lack of understanding
from Government bodies that they
had turned to for assistance including
employment and financial advice.
• Driving remains a highly desirable
and necessary component in the quality
of a person’s life; being a driver or being
driven by someone else remains the
preferred mode of transport, although
people in metropolitan areas also used
public transport.
The future of the Australian Epilepsy
Research Register (AERR): More
recruitment from states other than
Victoria is required in order to make this
a more representative sample of people
living with epilepsy in the community.
This is proceeding via members of
Epilepsy Australia and Epilepsy Action
but the AERR requires more entry
points for recruitment.
Sleeping on the job – not at The Epilepsy Centre, SA & NT!
The Epilepsy Centre SA & NT, with a grant from the
Department for Manufacturing, Innovation, Trade,
Resources and Energy, has partnered with the Flinders
University of South Australia and Roche Foam to test the
effectiveness of a prototype anti-suffocation epilepsy pillow
designed by The Epilepsy Centre in conjunction with Roach
Foam to reduce the risk of suffocation during/after an epileptic
seizure.
Initial phase of the research was to set up the experiments at
the Repatriation General Hospital Sleep Lab. The prototype
pillows will undergo rigorous testing over the next few
months to determine their effectiveness in reducing the risk of
suffocation during or after experiencing a seizure. If testing
proves positive, production of the new pillow will go ahead
early next year.
20 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 21

CONSUMER UPDATE
What is a National Disability
Insurance Scheme (NDIS)
An NDIS will be aimed at those who
are most in need, providing long term,
high quality support for around 410,000
people who have a permanent disability that
significantly affects their communication,
mobility, self-care or self-management.
It will focus on intensive early intervention,
particularly for people where there is
good evidence that it will substantially
improve functioning or delay or lesson a
decline in functioning. It will also include
a comprehensive information and referral
service, to help people with a disability who
need access to mainstream, disability and
community supports.
An NDIS will give all Australians the peace
of mind to know that if they have or acquire
a disability that leaves them needing daily
assistance with everyday life, or if they care
for someone who has a disability, that they
will be supported.
An NDIS requires fundamental change to
how disability care and support is delivered in
Australia. It is akin to designing and building
a house from scratch, getting each step right
before moving on to the next. It’s not simply
a matter of adding an extension. So this will
take time – the Productivity Commission
suggests seven years.
However, the first stage of an NDIS will
start from July 2013 in up to four locations
across the country. From mid-2013, about
10,000 people with significant and permanent
disabilities will start to receive support. By
July 2014, that figure will rise to 20,000
people.
A new NDIS Launch Transition Agency will
be established to run the delivery of care and
support to people with disability, their families
and carers in the select locations.
The initial launch locations will be
determined in consultation with the states and
territories – who have all agreed their shared
responsibility for the fundamental reform of
disability care and support.
The work done at these launch locations
will give the Government vital information on
how best to progress the national roll-out.
An NDIS will look beyond immediate need,
and will focus on what’s required across a
person’s lifetime. At its core will be:
• A lifetime approach – funding is long-term
and sustainable. People with disability and
their carers will have peace of mind that the
individualised care and support they receive
will change as their needs change.
• Choice and control – people choose how
they get support and have control over
when, where and how they receive it. For
some, there may be the potential to manage
their own funding.
• Social and economic participation – people
with disability will be supported to live a
meaningful life in their community to their
full potential.
• Focus on early intervention – the system
will have enough resources and will be
smart enough to invest in remedial and
preventative early intervention instead of
just providing support when a family is in
crisis.
To learn more about the National
Disability Insurance Scheme go to
www.ndis.gov.au
cura 1
Seizure Alert System
The cura 1 Seizure Alert System
provides peace of mind for carers and
people living with epilepsy by detecting
the shaking and jerking movements
associated with tonic-clonic seizures,
as well as detecting sounds of possible
distress.
The system integrates multiple
monitoring functions into a single
compact device that sends a signal to a
third party alarm or an (optional) wireless
remote alarm system.
For more information contact 1300 122
273 or visit www.cura1.com
EpDetect
Free Mobile
Phone App
Epdetect is an accelerometer based
mobile phone application that uses
advanced signal processing to detect
epileptic seizures. It runs on most mobile
phones that support SMS messaging,
movement detection and GPS position
location.
Epdetect monitors the wearer’s
movements, distinguishing between
normal movement and movement
associated with a tonic–clonic seizure.
If a seizure is detected, Epdetect will
contact and alert your carer with your
status and GPS position.
www.epdetect.com
Want to wear the most famous jacket of all
The gold jacket made famous by Collingwood cheer squad identity Jeff ‘Joffa’ Corfe has been worn at
weddings, draped over coffins and now is being mass produced. All, of course, for a good cause … epilepsy.
The Magpies are producing replica gold jackets and part of the proceeds will go to the Epilepsy Foundation
of Victoria. The Foundation is a charity close to Joffa’s heart as his daughter Emma was diagnosed with the
condition more than 10 years ago.
Joffa has been an Epilepsy Ambassador for the Epilepsy Foundation for over 6 years. “I don’t think people
understand the importance of the jacket and what it means to Collingwood supporters,” he said. “To have the
Epilepsy Foundation as part of that is huge, this club is the biggest sporting club in the country with over 1
million supporters.” As Joffa says “Love me or loathe me, we’re going to tell you about epilepsy: that it’s okay to
have epilepsy, and that everyone should know seizure first aid. If I can make a difference to one person’s life,
then I’m going to do everything I can to make that difference.”
The Epilepsy Foundation of Victoria thanks Allan Purvis for his great design and the Collingwood Football Club
Foundation for their generous support. To purchase a jacket go to http://shop.collingwoodfc.com.au/
“
face2face
A familiar name at the Epilepsy Foundation of Victoria, Client
Services Manager and Counselor Lisa Rath talks about the
past 23 years working for the Foundation and the experience
she now brings to this diverse role. Here, Lisa shares with us
her enthusiasm for her work that hasn’t waned over time.
began work for the Epilepsy
I Foundation of Victoria in Bendigo
just over 23 years ago when I was the
successful candidate for a 15 hour a
week position based at the community
health centre in Eaglehawk.
I still remember my first week
in the job. I started the day after
the Labour Day public holiday and
spent the remaining four days of
the working week in Melbourne at
our headquarters in Kintore Street,
Camberwell. I knew no one with
epilepsy and was attracted to the
position because I had two young
primary school aged children and my
role as their mother at this stage of my
life was paramount. I had trained as a
nurse, graduating in the late 70’s and
can remember nursing one patient who
had a padded spoon in a tray on their
bedside table!
In the early days travel was
restricted to a 50km radius around
Bendigo and anything further required
special negotiation. Gradually the
margin expanded to encompass the
Loddon Mallee region and then the
two days doubled to four when our
Hume regional worker, Lyn Bailey,
resigned. The Foundation asked me to
assume responsibility for that region,
which I happily accepted because by
then my children were much older.
We maintained a part-time
Shepparton office, also located in a
community health centre for a couple
of years, but eventually closed the
office and scheduled regular trips to
Shepparton and beyond as required.
The regional work has always been
stimulating because of the diversity of
tasks such as participation in epilepsy
clinics, education and training, and
home visits. As a regional worker,
especially in the early days, you
needed to be capable of delivering a
range of services.
I have been employed in a full time
capacity for a number of years now –
possibly ten, but I’m not sure. For the
past five to six years I have been based
in Melbourne at our headquarters
in Camberwell, but have retained
regional responsibility for the Loddon
Mallee & Hume regions.
These days I do much less training
and am more focussed on providing
direct support services to individuals
and families. I am rostered each
week to do two days of intake, which
involves telephone, email and face
to face support. Intake is a vital part
of our service and we are frequently
assisting people at very vulnerable
stages of their life.
On a personal note, I have two adult
children – a 30 year old son who lives
in Bendigo and a 32 year old daughter
who is currently living in Bristol in the
UK. My husband, Geoff, and I love
good food, wine, live music and travel.
We also love our AFL footy and go to
a game most weekends. I used to be a
recreational cross country runner but
gave that away a few years ago due
to knee problems. Swapping runners
for cycling gear, I’ve been riding my
bike to work regularly for at least
the past two years and I’m fitter now
than I have been for many years. The
24km return trip is very therapeutic,
especially after a busy day on intake.
I never get out of bed in the morning
and dread coming to work.
I am also thoroughly enjoying the
opportunity to become involved in
project work within our agency. I’ve
recently worked closely with our IT
guru, Jon Hindmarsh, to develop a
Client Information system we call
Client Manager. This system allows
us to capture information about all
elements of our client service – who
contacts us, why they contact us, what
help are they requesting, and what
service have we provided. We envisage
this new system will allow us to better
target high quality services to the areas
of greatest need.
This job has given me an
opportunity to grow and develop in so
many ways and I am as enthusiastic
today as I remember being when I first
started. It is difficult to find the right
language to describe how intensely
rewarding the position is – draining
at times, too busy and demanding at
times, but always rewarding.
I constantly meet wonderful people
who are often dealing with extremely
difficult circumstances and I consider
it a privilege to have the opportunity to
make some positive difference in the
lives of individuals and families living
with epilepsy.
“
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24 THE EPILEPSY REPORT JUNE 2012