Canada’s Community Needs Prioritized in Roundtable Report

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by Mary Chapman |

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Improving access and care for Parkinson’s disease patients, increasing the number of practitioners, and improving healthcare providers’ education are three priorities raised in a Parkinson Canada report that explores the advocacy needs of the Parkinson’s community in Canada.

The organization, which plans to build a foundation for future advocacy efforts, regards the recently released National Roundtable Report as the first step. The next step will be development of a Parkinson Canada Advocacy Strategy that will be based on the report. The strategy will outline how the organization and Canada residents can help advocate for those living with the disease.

The 19-page report is the culmination of a nine-part roundtable discussion series among more than 150 community members from across Canada, including patients, care partners, community organizations, healthcare specialists, and government officials. The series consisted of eight regional roundtable discussions, followed by a national session, over three months.

“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,” said Bob Kuhn, a Parkinson Advisory Council member and roundtable participant, in a press release.

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“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,” Kuhn said.

The report prioritizes the following actions to help improve patients’ quality of life:

  • Identify and address Parkinson’s disease training and knowledge gaps among healthcare providers, with the goal of making earlier diagnoses and treatments
  • Examine systemic issues and barriers that exist throughout the healthcare system to determine what can be done to increase the number of healthcare practitioners who can support patients
  • Advance equitable access to care and improved Parkinson’s treatments for all Canada patients

“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 with Parkinson’s,” said Karen Lee, PhD, president and CEO, Parkinson Canada.

“The National Roundtable Report provides a roadmap for the development of our future advocacy work to support those affected by Parkinson’s,” Lee said.

More than 100,000 Canada residents live with the progressive neurodegenerative disorder. Last year, according to the report, 30 people were diagnosed with Parkinson’s daily. Within 10 years, that figure is expected to climb to 50. There is approximately one movement disorder specialist for every 1,500 patients in Canada, and one in five patients wait at least a year to receive an official diagnosis after reporting their symptoms to a medical professional.

The report provides an overview of Parkinson’s in Canada and includes roundtable discussion themes, healthcare provider education, care coordination, access to movement disorder specialists, and priorities and next steps.

The discussions and report were sponsored in part by the pharmaceutical company AbbVie.