The federal election is now just around the corner, on September 20th. Despite the short window of opportunity for engagement, Parkinson Canada has been working hard to raise awareness of several key issues to federal candidates and elected officials, thanks to your support.
The Key Issues
We outline the three most crucial issues facing Canadians impacted by Parkinson’s during this year’s election campaign as follows:
Diagnosis Wait Times
Diagnosis wait times are too long in Canada. One in five people living in Canada waits more than a year to receive a formal diagnosis after first reporting their symptoms to a medical professional. These prolonged wait times have serious implications for physical and mental health, as any of you living with Parkinson’s can attest to.
Access to Parkinson’s Specialists
People living with Parkinson’s need regular access to Parkinson’s specialists, especially in the time immediately after diagnosis. But as of 2021, the national average wait time to meet with a Parkinson’s specialist is 11 months. Moreover, Parkinson’s specialists are typically located within major cities in Canada, posing geographical barriers for people living in rural parts of the country.
Affordability of Healthcare Services and Medications
Nearly half of people in Canada living with Parkinson’s and their care partners find it difficult to pay medical expenses related to the treatment of Parkinson’s, from physiotherapy and exercise to mental health services and speech therapy. For many, access to these services and medications is limited or even unaffordable.
Parkinson Canada Roundtables Update
As you may know, Parkinson Canada is collaborating and consulting with people from across the country to determine what partnerships and resources must be in place to promote earlier diagnosis and a better system of care with increased access for all Canadians. Eight virtual roundtables of people living with Parkinson’s, care partners, health care providers, and community organizations will provide the foundations for this advocacy project. As of the date of this newsletter, there have been five roundtables.
Following their conclusion, Parkinson Canada will share the results of these roundtables by public webinar. At that time, we plan to have tangible solutions that Parkinson Canada, our partners and advocates can bring to the government to close these gaps in care for people in all stages of the disease. We encourage you to sign up here to stay informed about this initiative.
The story of one family affected by Parkinson’s represents the challenges faced by many across Canada, particularly in remote areas. Jessica Brace of Yellowknife shared with the roundtable the story of her family’s difficulties in accessing care for her father after he moved there from Vancouver in 2018. There are no Parkinson’s specialists or even neurologists in the N.W.T.
“Initially, our consultations were with GPs or other specialists who knew nothing about Parkinson’s, and the recommendations were to wait until a visiting neurologist came to town, which took a year and a half and then six months for a follow-up. But in the interim, my father’s disease was progressing rapidly, so regular doctors were making changes to his medication which were inappropriate for him. When we were finally able to see the neurologist, he changed the regimen and his condition improved.”
Ironically, it was the COVID-19 pandemic that turned things around for Jessica’s father.
“The biggest problem was that nobody was able to give us that advocacy throughout his ongoing Parkinson’s journey. So, when COVID hit, and we were able to get access to virtual care that we never had before, we got a virtual appointment with a neurologist. The neurologist referred my dad to a movement disorder clinic, which we hadn’t known existed before. And now, through Alberta Health, we have been able to get him recommended to an L-dopa program, which is also exciting.”
Jessica has sympathy for those affected by Parkinson’s who don’t have an advocate nearby to take them to appointments or help them navigate the system.
“If I wasn’t there for him, I don’t know how he would get the care he needs. There are no Parkinson’s support groups in the territories.”
How To Raise Your Voice This Election
Parkinson Canada is committed to raising the voice of those affected by Parkinson’s. Together, we can call on our electoral candidates to take meaningful action towards improved healthcare outcomes for the Canadian Parkinson community.
Visit Parkinson.ca/election to learn the easy steps you can take toward meaningful action and to find helpful tools to help you engage with your candidates; raise your voice on social media (using #PrioritizePD) and communicate key messages to local media.
You can also view our election webinar, which further explains our engagement strategy and features personal stories directly related to our key messages by people living with Parkinson’s. If you would like more information, our Federal Election Toolkit provides even more ways in which you can get involved.
Together, we can ensure that the voices of those living with Parkinson’s are heard by those who can take meaningful action on diagnosis and access to multidisciplinary care. No matter what.