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Edition 33, 2020
Hi Friend,
Welcome to Brainwaves.
In this edition, we share two new research projects that we are pleased to participate with, a virtual walk and other local news.
We also recently re-submitted our State Government community consultation budget submission showing the inclusion of new initiatives that we have implemented in response to COVID-19. These have included the development of:
- a new Health and Wellbeing telephone service that has been well received but requires additional funds to continue.
- direct contact and support to over 42 additional workplaces, and in partnership with the TCCI sent support information to 9,000 people during April and May.
- development of a resource pack for all Tasmanian healthcare and specialist providers, and conducting over 214 ‘foot in the door’ visits.
You are welcome to read our updated Government funding submission here: https://epilepsytasmania.org.au/community-consultation-funding-submission-2019/
Take care,
Wendy Groot, CEO Epilepsy Tasmania.
Walk for Epilepsy
This year's Walk for Epilepsy will be a virtual event so that more Australians can engage and participate, despite COVID-19 restrictions.
It will run for 25 days in October (1st to 25th) because this represents the number of Australians affected by epilepsy (1 in 25). Participants choose their own challenge - walk, run, ride, swim, or a combination - because living with epilepsy can be a challenge.
Keep watch on our Facebook page for details soon on how to participate.
Q & A with Epilepsy Tasmania's Nurse-Educator
Emma is a registered Nurse-Educator at Epilepsy Tasmania. In this video, she explains how she helps Tasmanians with epilepsy and those around them, and what she finds most rewarding about her job.
Watch our video here https://youtu.be/enrZL_nOJ_k and subscribe to be notified when we add new videos (we are currently creating a volunteer video - keep watch!).
Help improve the future of Epilepsy Care
Are you an epilepsy nurse working in Australia?
Epilepsy Australia (including Epilepsy Tasmania) and Macquarie University are seeking participants for a collaborative study exploring the roles and responsibilities of nurses in the management of epilepsy across primary and community care settings.
The effective management of epilepsy is influenced by shared clinical care across community, primary and tertiary contexts. After undertaking research with epilepsy specialists, community neurologists and GPs, the team are now focussing on the important role of nurses. This study aims to explore and clarify the work of epilepsy nurses across primary and community care settings, e.g., in treating and managing epilepsy, connecting people to services, and providing information and support to individuals and families.
Participation in the study will involve a one-hour interview with a study researcher, and the option of participating in another interview or a small focus group at a later date.
Participation is completely voluntary and confidentiality is guaranteed. If you are interested in finding out more about participating in this study please email epilepsynurse@mq.edu.au or ring Dr Karen Hutchinson (02) 9850 2451.
The Australian Epilepsy Project ( AEP) is an ambitious large-scale project being proposed to The Australian Government as part of the Medical Research Future Fund Frontiers (MRFF) Initiative. If awarded, the AEP will change the way epilepsy is diagnosed, managed and treated for all Australians, and in the future, internationally.
The AEP will give access to advanced multimodal testing across advanced MRI, cognition and genetics through a national network of Community Hubs. These test results will then be sent back to the AEP for interpretation and integration to produce the AEP report – a decision support tool or clinicians to guide precise diagnosis and optimal treatment selection. This comprehensive testing will reduce the time it currently takes to arrive at a diagnosis and the trial and error process of optimal treatment selection. In the near future, AEP will add Artificial intelligence algorithms to look for further patterns in testing data which will be able to add a predictive capability to the AEP report.
The project is currently in a pilot phase at the Florey Institute and not accepting external referrals. Once awarded, the AEP will move quickly to open a testing hub in every state accepting referrals from neurologists ( and in the future GPs) for eligible participants. The AEP will initially focus on participants over 18 years of age, along with a few additional criteria( see website for more details).
At this stage, the MRFF is just looking to spread the word and gain support for the project from both the epilepsy community and the broader community. It aims to raise the awareness of epilepsy being a hidden, yet devastating condition, that is in desperate need for substantial funding to improve the current standard management and improve the lives of people and their families that are living with epilepsy.
The MRFF is asking for people to sign its digital support board so that decision-makers can see that thousands of supporters agree that epilepsy needs more attention, more funding and access to the best standard of testing to guide diagnosis and optimal care for all Australians living with epilepsy.
Read more about the AEP: https://epilepsyproject.org.au/support/
Show us your FingerKnitting pics!
We now have over twenty-one schools all around Tasmania (including Flinders Island District High School) participating in our #FingerKnittingChallenge to raise awareness of epilepsy.
Their challenge is to:
Step 1. Drape a room, piece of furniture or anything at all in purple finger knitting.
Step 2. Share their efforts on social media using the hashtag #FingerKnittingChallenge.
Next week we will be giving out some spot prizes (thanks to Scholastic for their book donations) so schools or students will need to post some public pics and use our hashtag to be in with a chance to win.
Competition closes Friday 11th September 2020. You can still register to join too!
For more info and to learn how to finger knit: https://epilepsytasmania.org.au/fingerknitting-register-event/
Thank You to our volunteer Friends
Volunteers, Newlyn and Cathy, came into our Launceston office last Wednesday and did a magnificent job finishing the stocktake while adhering to COVID-19 physical distancing restrictions.
“Life is 10% what happens to us,
and 90% how we react to it."
Dennis P Kimbro
Epilepsy Tasmania is a not-for-profit community organisation improving the quality of life of Tasmanians with epilepsy, and those around them, through education, coordination and support.
