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Epilepsy Connect in Tasmania Invaluable

Dr Rosalie Woodruff MP

Dr Rosalie Woodruff MP  -  Tuesday, 13 September 2016

Tags: Health

Ms WOODRUFF (Franklin) - Madam Speaker, I want to speak tonight about the launch I attended this morning of a new service for Tasmanians, Epilepsy Connect.  This has been funded as a pilot project to do something very novel but intuitively obvious, peer-to-peer telephone support for people living with epilepsy or who care for a family member with epilepsy.  This project is a first in Australia.  I admit to knowing too little until this morning about the experiences of people living with epilepsy.  I was aware people with epilepsy sometimes cannot drive and that people can find themselves lying on the ground without any warning, wondering what happened to them, but I naively thought that these days surely it could be fixed with medication.  What I found out today is that medication only works so far and only for some people. 

I heard a very moving story about a woman walking her daughter to school and enjoying the morning.  The next thing she felt was the rough ground under her face and the sensation of pain all over her body.  Her hands were bleeding, her face was scratched and her young daughter was standing and crying inconsolably next to her.  The worst part of the experience for her was the realisation her daughter had been standing there witnessing her seizure and no-one else had come up to comfort her.  None of the people walking their kids to school had stopped to give her a hug.

Tasmanians are not cruel people.  In fact, we like to think we are very connected with each other in our small communities, but we are just as capable of cowardly turning our back when we do not know how to approach a situation.  What should we do, how should we help?  Clearly we still have a lot of work to do to teach each other to reach out and ask when we see a person is not coping.

The other story this morning was from Kym Meers, a South Australian mother of a daughter with epilepsy.  Kym was recently awarded the international Golden Light Award for Australia for bringing epilepsy out of the shadows.  What I learnt from Kym is that there is so much more to epilepsy than seizures.  Her daughter, Izla Matilda, has West Syndrome, which is a rare and catastrophic form of epilepsy.  She was diagnosed at four months old and can have up to 200 seizures a day, either by her eyes flicking and her body jerking or she can lose control of her head and just hit the floor. 

There is not a huge understanding of epilepsy and the various types of syndromes.  Every person diagnosed follows a different path and there is no one plan for each person.  Adults have to be careful of the many stresses of modern living and people live with the constant knowledge that they need to be protective of themselves.  There is also a much greater risk for people with epilepsy of SUDEP, or sudden unexpected death in epilepsy.

Every night Kym and her husband put their daughter to bed they sleep with an eye open because she still has seizures every night.  Kym and her husband were told Izla would never walk or talk and would be delayed in her development, but through their intensive work with her physiotherapy and speech therapy, she is walking and talking.  Although she has an intellectual disability, she does get to school.  Her little friends support her.  When she falls asleep on the couch they know she has a thunderstorm in her brain.  That is the thing - people tend to kindness when they know what to do and how to act.  It is up to us all to do everything we can to break down the stigma and lack of understanding about this condition.

When Kym Meers first heard about Epilepsy Connect she was struck by this amazing Tasmanian initiative to have a telephone-based peer support program for people living with epilepsy.  It allows a person to make a phone call and have a conversation with someone who understands about the seizures, the anxiety, the medicinal side effects, the barriers and everything else that goes with that life.  There is no equivalent service in South Australia where she lives.  This is a great pilot project funded by community grants and I congratulate everybody, especially the board of Epilepsy Tasmania, for making it happen.  Here's hoping it will become a Tasmanian export to the mainland soon.