Sharing the vision epilepsy: life’s turning point Gavin Dimitri

---

Issue No. 2, 2008

Sharing the vision

                epilepsy: life’s turning point     

                        

Gavin Dimitri

Robert Mittan

‘beating bad seizures’

neuropsychologist

Film-maker Fiona Cochrane’s

Rachel: a perfect life

Midazolam

 

Alison Hitchcock explains

epilepsy & light

Dr Saul Mullen and the facts about

A report on our meeting with the

Parliamentary Friends

of 

Epilepsy

 Group

---

2

THE EPILEPSY REPORT OCTOBER 2008

3

                          THE EPILEPSY REPORT OCTOBER 2008

Editor

Denise Chapman

Contributing Editors

Russell Pollard, Dr Frank Vajda, 

Fiona Tito, Robert Cole.

Contributors

Marg Callaghan, Fiona Cochrane, 

Gavin Dimitri, Mark Francis, 

Alison Hitchcock, Dr Saul Mullen, 

Jaya Pinikahana, Sue Stubbs, 

Prof John Willoughby, Dr Ashley 

Walton, Dr Wenzhi Wang.

Photography

Dreamstime.com 

Print Pegasus Print Group

The Epilepsy Report is published 

by Epilepsy Australia Ltd

818 Burke Road 

Camberwell VIC 3124 Australia

Tel: [phone]

[e-mail]          

www.epilepsyaustralia.net

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

1300 852 853

PLUS

Special feature

Marg Callaghan

the personal experience of 

SUDEP

5

WELCOME

Russell Pollard, whom many readers will know, has decided 

that the time has come for him to take up new personal 

challenges. Russell has been the Executive Officer of the 

Epilepsy Foundation of Victoria (EFV) for the past 13 years, and 

the Executive Officer of Epilepsy Australia since its inception in 

2000.

An educationalist, the need for quality information about 

epilepsy for people with epilepsy was always a priority. Russell 

was the driving force behind many successful publications 

including Sudden Unexpected Death in Epilepsy: a global 

conversation,  Epifile: an epilepsy management manual and The 

Epilepsy Report. All lasting legacies to his commitment to the 

epilepsy community.

The needs of people with epilepsy were always paramount 

to Russell. On service delivery, he lifted the bar by ensuring 

all counsellors obtained professional qualifications in solution-

oriented counselling and he initiated the development of the only 

nationally accredited training course in epilepsy in collaboration 

with Victoria University.

Russell always saw the ‘big picture’. He led with passion 

and enthusiasm, nationally and internationally, and his many 

achievements include bringing Australian epilepsy associations 

together as Epilepsy Australia and lobbying tirelessly for a strong 

national voice for epilepsy. Instrumental in forming the Joint 

Epilepsy Council of Australia (JECA), his active promotion for 

qulaity social research into epilepsy led to the first Australian-

wide survey of people with epilepsy. Armed with the results of 

this survey (and a lobbyist pass), he took the concerns of people 

with epilepsy to our politicians and policy makers. The newly 

formed  Parliamentary Friends of Epilepsy is a testament to his 

determination to give ‘epilepsy’ a voice where it matters.

While he has passed on the baton, he is not lost to us. His 

passion remains and he will continue to assist the epilepsy 

community where he can. 

Editor

National Epilepsy Helpline

     Dr Wenzhi Wang

researching stigma in 

China

 10

      Gavin Dimitri

 

achieving lifelong 

goals after 

epilepsy surgery

14

CONTENTS

Research at Flinders: part 3  

13

The facts on epilepsy & light  

24

Informing our Parliamentary Friends 

3

Improving children’s memory  

12

  

What is SUDEP?

  

6

From the reading corner  

30

face2face 

with Graeme Shears 

 31

 

Midazolam: emergency treatment  

22

Medical students learn about epilepsy  

7

Epilepsy & depression: research review  

27

 

Epilepsy & alcohol  

26

 8

    Fiona Cochrane: 

the making of Rachel: a 

perfect life

 

T

he first official meeting of the 

Parliamentary Friends of Epilepsy 

was held 18 September at Parliament 

House.

In his welcome address to fellow 

parliamentarians, members of the Joint 

Epilepsy Council of Australia (JECA)  

and to the those in attendance whose 

lives have been affected by epilepsy, 

co-convenor Mark Coulton MP, spoke 

of the need for all parliamentarians to be 

better informed of the medical and social 

impact of epilepsy.  

At the launch of  the Parliamentary 

Friends of Epilepsy in May, JECA 

outlined only very briefly, the impact 

that epilepsy has on the lives of many 

Australians. We asked for their help then 

by making sure:

when matters of health care are 

 

ƒ

debated, that the decision-makers 

consider epilepsy and its impact; 

when matters of resource allocation are 

 

ƒ

considered, that epilepsy is in the mix; 

and

when priorities are considered, that 

 

ƒ

epilepsy is not left behind, once again 

in the shadows. 

At this latest meeting JECA provided 

more than an outline of the impact 

epilepsy has on people’s lives. Guest 

speaker Marg Callaghan related her 

family’s experience with epilepsy and 

the untimely death of her son Matthew, 

aged 26, to Sudden Unexpected Death 

in Epilepsy (SUDEP). Unfortunately, 

her story is not unique, and for the 

Parliamentary Friends in attendance it 

brought home the fact that epilepsy can, 

in certain instances, be fatal: a fact of 

which many were unaware.  (Marg’s 

address to the meeting is reprinted in 

full on page 5.)

Mortality in epilepsy is an issue 

that is rarely talked about. In her 

opening address, JECA Chair Jacinta 

Cummins, said “When we think of 

the big killers in Australia we think, 

rightly, of cancer and heart disease. 

But around 300 Australians die every 

year from epilepsy-related causes, 

many preventable, and around 150 of 

these deaths are due to SUDEP.”  Our 

Parliamentary Friends were quite taken 

aback by these figures.

Jacinta went on to say “Australia 

can do better to support the needs of 

people with epilepsy by recognizing that 

epilepsy is still in the shadows within 

our health system and that needs to 

change”. 

In presenting JECA’s Vision and Plan 

of Action, Dr Lindsay Vowells, President 

of Epilepsy Australia, said “JECA is 

keen not to just lump a problem at the 

feet of Government – we are also keen to 

engage in a discussion on the solutions. 

“We also accept that responsibility 

for the issues we face, is not solely 

the domain of the Government. It is 

incumbent on us, on JECA, to facilitate 

a partnership with the health sector, 

Government, the not-for-profit sector, 

the philanthropic sector and possibly 

industry.

“But to do that, we need a shared 

vision, a shared vision which will see, by 

2012, an Australia that better supports 

the needs of people with epilepsy”.

In closing, Dr Vowells said “We have a 

vision and a plan on how this vision can 

be achieved. We know the time is right 

for a concerted push to bring ‘epilepsy 

out of the shadows” - why? Simply 

because as a nation we are not doing 

enough”.

Co-convenor Jill Hall MP spoke on the 

vision and the issues it raised – the need 

for inclusive employment, the prevalence 

of stigma and the issue of men’s health in 

Sharing our 

vision with our 

Parliamentary 

Friends  

light of Marg Callaghan’s address. She 

also talked about how health services are 

not structured to deal with the needs of 

people with epilepsy. 

Jill suggested several ways that the 

Friends could gather information on 

epilepsy –  one of which could be to 

conduct a hearing similar to those 

conducted by the Health & Ageing 

Committee and proposed to explore 

these options before the next meeting.

Co-convenors Jill Hall MPand Mark Coulton MP addressing the meeting

Our Vision

By 2012, Australia will have:

an improved understanding of 

 

ƒ

the impact this condition has 

on Australia, its people and its 

economy

an appropriate proportion of 

 

ƒ

our world-class research effort 

targeted to the better diagnosis 

and treatment of epilepsy 

communities that are increasingly 

 

ƒ

aware of epilepsy, what it is, 

how to manage it, so that people 

with epilepsy can live without 

stigma and be active community 

participants

workplaces that are informed, free 

 

ƒ

of stigma, and support those with 

epilepsy to remain in employment

health services that reflect world’s 

 

ƒ

best practice in promoting the 

right care by the right health 

professional

support provided to people with 

 

ƒ

epilepsy and their carers so 

that they are assisted in their 

pursuit to manage their condition 

and actively participate in the 

community.

     Robert Mittan  

on how to 

‘beat bad seizures’

 16  

---