To the editor:
Learning you or a loved one has Parkinson’s disease can be devastating news. PD is the second most common neurological disease after Alzheimer’s and common symptoms include resting tremor, muscle joint and stiffness, lack of coordination, mood changes, pain and more.
The good news is that although it is a complex disorder with its exact cause unknown, it is one of the most treatable neurological conditions. Most people are able to control their symptoms for many years by working with physicians and their healthcare team to find the right therapies.
People with advanced Parkinson’s disease may become frail, and combinations of medications need to be delivered in the right dosage at the right time to maintain independence and quality of life. The contrast between optimal versus ineffective therapy may be the difference between independent living and a hospital or nursing home.
The key to effective treatment is early diagnosis. There is no single test for Parkinson’s and many other conditions may mimic the disease, so a comprehensive exam by a neurologist with additional experience in PD is required.
Unfortunately, patients in British Columbia can face long waits of up to 24 months, which often means delayed treatment and unnecessary disease progression. Once diagnosed, patients often find that health professionals such as nurses and physiotherapists lack knowledge of Parkinson’s and best practices. This means patients can receive improper treatment in emergency rooms, hospitals and care homes.
For these reasons and more, Parkinson Society British Columbia (PSBC) has developed a four-point plan to better coordinate and increase access to critical supports and deliver better care.
Parkinson’s already costs the B.C. health system about $112 million annually and we believe we can help reduce further impact by making strategic investments we estimate will cost $2 million a year.
We are currently looking to simultaneously raise awareness of Parkinson’s disease while executing the following advocacy strategy based on the following:
• Developing a B.C. Parkinson’s Disease Strategy: Engaging health system planners, clinical experts and the experience of people living with PD to develop an evidenced-based strategy to improve and better coordinate the services provided to PD patients around B.C.
• Adding specialized staff to existing PD programs: Adding physicians and allied health professionals to allow additional assessment capacity at PD-specific treatment programs in the province. Patients can face an 18-24 month wait to see a specialist, during which their disease will continue to progress.
• Funding PD-specific training for allied health professionals: For example, people living with PD regularly use physiotherapy services to maintain mobility, but very few of the province’s 3,500 physiotherapists have training related to PD and movement disorders. PSBC has partnered with UBC’s Continuing Medical Education to develop a proposed program that would train physiotherapists in Parkinson’s disease.
• Expanding the Deep Brain Stimulation program: This is an option for a small number of patients with advanced Parkinson’s disease. The surgery has enabled people to live independently in their own homes for many more years than they would be able to without receiving this treatment, but patients can wait many years to access it given current funding limits.
By taking action in these four areas, the province can help those with PD lead independent lives for as long as possible and reduce their overall impact on the healthcare system.
Our SuperWalk campaign has been going on for a month and culminates with a walk at Waterfront Park this Saturday Sept. 9 at 10 a.m.
Read more about advocacy efforts for the implementation of our Four Point Plan at www.parkinson.bc.ca/advocacy.