With more than 100,000 Canadians living with Parkinson’s and many more touched by the disease having known a loved one, friend or co-worker diagnosed, the need to hear from those affected is critical. We are pleased to share some details of our Parkinson Canada Advocacy Roundtable meetings where we heard from more than 150 community members from across the country. From Newfoundland to Nunavut to Vancouver Island, we heard from people living with Parkinson’s and their care partners, regional community organizations, and a variety of researchers and healthcare professionals.
From these discussions, we’ve identified a crucial need for increased government support to address several areas of concern related to promoting earlier diagnosis and a better system of care with increased access for all Canadians. Some of these issues include reducing wait times for diagnosis, increasing access to multidisciplinary care, and facilitating the development of a comprehensive model for holistic care in Canada. These key recommendations and insights based on the roundtables will be included in a soon-to-be-released report.
Bob Kuhn, a member of Parkinson Canada’s Parkinson Advisory Council, attended the roundtable sessions and shared his thoughts.
“The message was clear. We Canadians struggle to respond to the vast, complex, and ever-increasing numbers and needs confronting those of us who battle Parkinson’s. I heard the pain of a broad array of dedicated medical professionals who experience daily the inadequacy of time and the insufficiency of support systems. I know that we have a big country with big unmet needs. But we must not leave the patients and those who serve them in constant threat of being forgotten.”
Parkinson’s is one of the fastest-growing neurological conditions in the world and Canada has one of the highest prevalence rates. With more than 100,000 people currently diagnosed in Canada, that number will grow by 30 people tomorrow and the day after that until we reach 50 new diagnoses per day in just 10 years. Today, one in five people wait more than a year to receive a formal diagnosis and the average wait time to see a specialist is 11 months. There are not enough Parkinson’s specialists and most of them are in major urban centres, posing a geographical barrier for rural Canadians living with Parkinson’s. These are just a few of the concerns Parkinson Canada looks to your support to help make real change.
We at Parkinson Canada urge our government for supportive measures to address these issues, which have serious implications for the quality of life of people newly diagnosed or living with Parkinson’s. This advocacy work is made possible by your generous donations.
To find out more about what we learned and the work to come, sign up here for the National Advocacy Webinar, which will provide an overview of the cross-country roundtable conversations, highlight stories and experiences, and look ahead to our future advocacy plans.
This webinar will be in English with simultaneous French translation.
4 Comments on “Parkinson Canada’s Advocacy Roundtable Wrap Up”
My husband has Lewy Body Dementia. My husband has been panelled for a care home. Choices are limited in Winnipeg, with locked facilities needed. Our projected wait time is 18 months! There are also cases of patients being sent to small towns, hours away from Winnipeg, without the consent of family. The phone call to family comes after the patient has been moved! Our health care system is strained beyond belief. Winnipeg is also critically short of respite workers. Our case manager has pulled every “ string” she can utilize to get me home care, as my husband is almost totally dependent on me . Nursing homes have such a horrid reputation thanks to the deaths due to COVID. Action needs to implemented as soon as possible to make sure these very vulnerable people are given a safe and enriching support they desperately need. One positive – we participate in a 6 week outdoor walking programme (despite the Winnipeg frigid weather) , at Fort Whyte Nature Centre,with a group of people suffering from Alzheimer’s /Dementia. Despite the frigid temperatures there have been few absences. Getting out in nature, with a naturalist talking about what we see : animal tracks, squirrel nests, birds, migration, deer, and why Aspen trees are found almost all over North America have been fascinating . The campfires get people talking and we have been building community. Our tour guide for “Tales Along the Trails” make certain we are safe with 2 volunteers available to assist anyone. Barret Miller, our naturalist, is passionate about the outdoors and my husband is so happy in participating in this weekly event. Thank you for asking for input!
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We have been hearing this story for over 26 years since
my husband was diagnosed. More action is needed !
Are we going to have some kind of a social / get together in Halifax this year?
Cheers
Louis
Hello Louis, this year we are hosting a virtual webinar called The Parkinson’s Prairie Shindig. The event is set for the 25th of March. A registration link will be made available closer to March. We hope to see you there.