Across Canada, most people living with Parkinson’s face the burden of significant wait times for diagnosis, as well as a lack of access to comprehensive, multidisciplinary care utilizing a consistent approach. It’s time to raise the voice of people affected with Parkinson’s through advocacy efforts focused on improving care.
Parkinson’s is a highly complex disease that requires a range of therapies and approaches to manage symptoms. Roberta Wilson Garrett’s story is but one example. Roberta describes her experience upon feeling a tingling in her arm, which eventually became a tremor.
“I waited six months to see a neurologist, who told me not to worry, that it wasn’t Parkinson’s. Eighteen months later, I found out I was misdiagnosed! By this point, I had developed a tremor in my jaw and was having trouble swallowing. It took me two years to finally be diagnosed. Through a Parkinson Canada workshop, I learned I could get a referral to Movement Disorder Clinic (MDC), something I didn’t even know existed. I’m lucky to have access to an MDC, but many Canadians do not.”
Roberta is not alone – about one in five people with Parkinson’s wait more than a year to receive a formal diagnosis. Depending on the region they reside in, it can be much longer. There is only one Parkinson’s specialist in Canada for every 1,025 people living with Parkinson’s, many of whom are concentrated in urban areas.
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. Nine virtual roundtables of people living with Parkinson’s, care partners, health care providers, and community organizations will provide the foundations for this advocacy project. Over the coming months, up to 200 voices from across the country will provide insights and build recommendations on wait times, access to multidisciplinary care and an improved consistent approach to care.
Following the conclusion of the roundtables, Parkinson Canada will share the results of these roundtables by public webinar, at which time we plan to have tangible solutions that Parkinson Canada, our partners and advocates can bring to government to close these gaps in care for people in all stages of the disease. The initiative will also turn its efforts to raising and activating greater public awareness on behalf of people living with Parkinson’s.
The roundtables kicked off in July with an event that included leading Canadian and international movement disorder specialists and other key advocacy experts. Two medical experts on the panel sharing insights and experiences were Dr. Tiago Mestre and Dr. Sarah Lidstone.
Dr. Tiago Mestre is a physician with The Ottawa Hospital and a researcher with the Ottawa Hospital Research Institute. He leads clinical research programs in movement disorders and is leading the implementation of programs for the treatment of advanced PD patients. One of Dr. Mestre’s initiatives in program implementation has been to break down silos in the health system, using community and hospital resources more efficiently to provide patient-centred care. His proposal for care delivery involves building a network from existing health resources. At the centre of the network or hub is the PD nurse specialist. Dr. Mestre is also a proponent of using technology-enabled care inspired by and made for people living with Parkinson’s. An initial study involving a patient portal co-designed with Parkinson’s patients and a framework allowing for the creation of a priority map for care and a plan to address them has been a success.
“My ultimate vision is that we can further test this model and implement a standard of care across Canada.”
Dr. Sarah Lidstone is also focused on a holistic model of care for people living with Parkinson’s. She is the director and research lead of the Movement Disorder Clinic at Toronto Western and the Toronto Rehabilitation Institute. Her research and practice have led her to focus on patient-centred approaches integrating physiotherapy and mental health along with other therapies.
“The relationship we have with our patients changes and evolves over time. It is with the community, the person living with Parkinson’s and their caregivers. Healthcare needs to acknowledge patients’ work in self-care and utilize their observations to build their knowledge – working together as equals with complementary sets of expertise. When you bring these diverse perspectives together, you can accomplish a lot of things – the sky is the limit.”
Regional roundtables will continue to be held weekly across the country over the next few months, with a national roll-up session schedule to consolidate discussions.
With a federal election campaign now under way we are calling on candidates to make Parkinson’s a priority. Learn more about how you can get involved in on our call for a national framework for Parkinson’s and on the issue of access to care at: Parkinson.ca/election. No matter what we are committed to raising the voices of people affected by Parkinson’s. Together, we can improve care.