Parkinson Canada Roundtable Report explores advocacy needs of Ontarians living with Parkinson's

TORONTO, May 16, 2022 /CNW/ - The Parkinson Canada Ontario Advocacy Roundtable Report, the first in a provincial series of reports following the National Advocacy Roundtable Report, launches this week.

More than 150 community members, including people living with Parkinson's, their care partners, community organizations, healthcare specialists and government officials from across Canada participated in a nine-part series of roundtable discussions, which led to the creation of the report.

The reports explore the healthcare realities and needs of the 100,000+ Canadians living with Parkinson's and are the first step in building the foundation of future advocacy efforts for Parkinson Canada.

Findings from the Ontario report include the following key facts regarding Ontarians living with Parkinson's:

• With over 46,000 diagnosed, the province of Ontario has the most individuals living with Parkinson's in Canada.
• The provincial average wait time to meet with a Parkinson's specialist is 11 months. 
• It is estimated that there is only one Parkinson's specialist for every 1,379 people living with Parkinson's in Ontario.
• 54% of care partners in Ontario feel they do not have sufficient access to information or resources.
• Over 50% of individuals pay out of pocket for exercise programs and physiotherapy. 

Findings from the Ontario report include the following key priorities for improving the quality of life for people living with Parkinson's in the province:

• Wait Times
  The prolonged wait times to see a Parkinson's specialist and receive a diagnosis have serious implications for an individual's quality of life and increase the likelihood for both physical and mental health deterioration.
• Model of Care
  Integrated health care comprises a multidisciplinary, non-invasive approach involving mental health support, nutritional support, exercise/physiotherapy, and language or speech support that helps in the holistic well-being of people living with Parkinson's.
  Currently, there is no consistent model of care in Ontario.
• Access to Care
  Most Parkinson's specialists are in major cities across southern Ontario. Similarly, many Parkinson-specific services are centralized to urban regions, posing geographical access barriers to residents in northern or rural areas. Many individuals also experience financial barriers to care, having to pay out-of-pocket in some part for medication, speech therapy, physiotherapy, and exercise classes. 

These priorities will provide a roadmap to the organization in developing our future advocacy work in supporting Ontarians affected by Parkinson's.

"There's a sense of urgency with Parkinson's and the growing number of people being diagnosed, and with that, a need for change to systemic barriers in healthcare to allow for things like earlier diagnosis and treatment, which will ultimately lead to a better quality of life for people living with Parkinson's," says Karen Lee, PhD, president and CEO, Parkinson Canada. "The Roundtable Reports provide a roadmap for the development of our future advocacy work to support those affected by Parkinson's."

Parkinson's is a chronic, progressive neurodegenerative disease caused by a loss of dopamine-producing neurons in areas of the brain associated with movement. It is one of the fastest-growing neurological diseases in the world and Canada has one of the highest prevalence rates compared to other countries. More than 100,000 people in Canada live with Parkinson's and that number will grow by about 30 people a day.

For more on the roundtables and to download the reports, visit our website: Parkinson.ca/advocacy. The roundtables and National Roundtable Report were supported in part with funding from AbbVie.

More than 100,000 Canadians live with Parkinson's, a number expected to increase substantially in the coming years, with 30 Canadians diagnosed each day.

Parkinson's is a chronic, progressive neurodegenerative disease caused by a loss of dopamine-producing neurons in areas of the brain associated with movement. Symptoms include a resting tremor, slowness of movement, muscle rigidity, and balance problems. Non-motor symptoms can include anxiety, depression, and sleep problems. The average age of diagnosis is 60, but some people are diagnosed prior to that and referred to as having early onset Parkinson's.

People with Parkinson's are at the centre of everything we do. Our mission is to transform the lives of people living with Parkinson's. Parkinson Canada funds critical research, provides information and support, increases awareness and advocates for improved healthcare outcomes for people with Parkinson's across Canada. The Parkinson Canada Research Program, which includes the Canadian Open Parkinson Network (C-OPN), funds innovative research for better treatments and a cure. A national registered charity, Parkinson Canada fulfils its mission through the generosity of donors and is an accredited organization under the Imagine Canada Standards Program since 2013.

Please visit parkinson.ca or call 1-800-565-3000 for more information, to get involved or to support Canadians affected by Parkinson's by making a donation.

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SOURCE Parkinson Canada