I am proud to announce that I was recently invited by Michelle Chadwick from Hypersomnolence Australia to become a member of the CDH Consumer Forum. I now have the opportunity to connect with consumers and other consumer advocates, to collaborate on initiatives that will benefit others within the Australian Narcolepsy communities.
Health consumers have been involved in planning and decision making within Australian health services at a growing rate. This is partly due to consumers becoming better informed about their rights and seeking out opportunities to participate, resulting in services which are better designed to meet patient and consumer needs leading to better health outcomes for patients. Research shows that even clinical research is of a higher standard when it is informed by the perspectives of the end users.
As a consumer representative, I will be providing a consumer perspective to help shape the future of people living with Narcolepsy. Consumer representatives act as an important link between the forum and the wider community, helping to ensure that the voice of the consumer is heard in the healthcare discussions that take place. This ensures that the decisions made are representative of the wider community and account for the needs of all stakeholders.
The purpose of the Central Disorders of Hypersomnolence (CDH) forum is to ensure that the voices of patients and their families are included in discussions about treatments, research, and policy. The forum provides opportunities for consumer advocates to collaborate with researchers, clinicians and other stakeholders to find new solutions and strategies for improving patient care. The forum also serves as an important source of information for patients, caregivers, and healthcare professionals.
Since joining the forum I have been very busy keeping the narcolepsy community informed by posting in various social media groups on Facebook as well as fascilitating the June Living With Narcolepsy online monthly catch-up. My chosen topic of discussion was regarding clinical trials/studies and what to expect when you participate in one. I created a screenshow using slides to present this subject to everyone in attendance, and have made the slides available for everyone who wished to keep a copy for later reference. I have also assisted with updating the survey for the Central Disorders of Hypersomnolence (CDH) Advocacy and Awareness Registry which is available on the Hypersomnolence Australia website. Learn more: https://www.hypersomnolenceaustralia.org.au/single-post/advocacy-awareness-registry
I have also been involved in creating a factsheet about accessing Xyrem in Australia which you can read via this link: how to access Xyrem in Australia. This factsheet also includes information about how you can (if your qualify) apply via public hospital programs to have the cost of Xyrem subsidised. My next project is to prepare for this years World Narcolepsy Day, this will involve planning how the Australian narcolepsy community can work together to raise awareness of Living With Narcolepsy. I look forward to sharing more about these plans with you all soon.
The next Living With Narcolepsy catch-up will be held on Wednesday the 5th of July, 2023. If you have any questions about the LWN meetings please email us at livingwithnarcolepsy@hypersomnolenceaustralia.org.au
