Gaps and priorities for Parkinson’s community
By Jacquie Micallef
In early 2022, Parkinson Canada’s National Advocacy Roundtable Report was released after a series of eight regional roundtables, followed by a national session that involved diverse participant representation. Their purpose was to listen to the realities and unmet needs of the Parkinson’s community and capture key priorities for improving the quality of life for people living with Parkinson’s. Findings and recommendations reported include:
1. Gaps in the support of development and promotion of Parkinson’s curriculum and awareness for family physicians and allied healthcare professionals.
Recommendation: Work needs to be done to address these gaps and provide additional training and knowledge transfer to qualified healthcare providers, which will allow for earlier diagnosis and treatment of Parkinson’s.
2. System issues exist within healthcare across Canada, which means people living with Parkinson’s are underserved given the limited number of Parkinson’s Nurse Specialists and Movement Disorder Specialists.
3. Systemic issues and barriers throughout the healthcare system need to be examined to determine what steps can be taken to increase the number of healthcare providers available to support people with Parkinson’s. Recommendation: Equitable access to care and treatments for all Canadians living with Parkinson’s is essential. This includes exploring the availability and wait times for life-changing treatments and access to Health Canada approved medications.
These priorities will help provide a roadmap for developing our future advocacy work in support of Canadians living with Parkinson’s. “The message is clear. We Canadians struggle to respond to the vast, complex, and ever-increasing numbers and needs confronting those of us who battle Parkinson’s,” says Bob Kuhn, a member of the Parkinson Advisory Council who participated in the roundtable sessions.
“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.”
The next step is the development of a Parkinson Canada Advocacy Strategy. “There’s a sense of urgency with Parkinson’s and the growing number of people being diagnosed, and with that, a need for change,” says Karen Lee, PhD, president and CEO, Parkinson Canada. “The National Roundtable Report provides a roadmap for the development of our future work to support those affected by Parkinson’s.”ϖ
Jacquie Micallef is the Vice President of Community Engagement at Parkinson Canada and oversees the organization’s Advocacy Portfolio. For more on the roundtables and to download the report, visit: Parkinson.ca/advocacy.
