Good afternoon, Mr. Chair and members of the committee.
On behalf of Neurological Health Charities Canada, I am grateful for the opportunity to provide input to the committee. Our recommendations to you are based on the collective insight of the NHCC's member organizations as well as the findings of the recently concluded National Population Health Study of Neurological Conditions.
NHCC is a collective of 24 health charities working together to improve the lives of all Canadians living with neurological conditions and their families. Neurological conditions impact individuals, families, communities, health care systems, and our economy. NHCC members recognize that more can be achieved collectively to improve outcomes and maximize value and sustainability than can be achieved individually.
My name is Bruce Ireland, and let me explain why I’m here and why it is important to me that, in its support of families and vulnerable Canadians, the Government of Canada acts on the findings of the national study.
Since 2000 I have been the primary caregiver for both my wife, Karen, who is now 65, who lives with Parkinson's disease, and for our daughter, Michelle, now 30, who has Down syndrome.
Most people are familiar with the tremors and rigidity typically associated with Parkinson’s disease, but almost 50% of people with Parkinson's also have clinical depression. In Karen's case, Parkinson’s disease initially manifested itself as severe depression, so severe sometimes that she couldn't get out of bed; and since 2000, when she was diagnosed at 51, Karen has been unable to work. Michelle is barely mobile and understands at the level of a 12-year-old, but we ensure that she is involved in all parts of my family life. I handle all the household duties and look after Karen and Michelle, including coordinating the medical and psychiatric care they both need.
Until 2009 when I took early retirement, I juggled caregiving with my full-time job as president and CEO of the YMCA in Oakville. Karen's depression has been the most challenging part of Parkinson's disease. However, new challenges present themselves regularly to our family. Because of arthritis, Karen has had surgery on both of her knees, and Michelle is facing major reconstructive surgery on her knees next year. Just moving around the house and the community is a major challenge for them, and presents its own challenges for me as their caregiver.
Our family's experience underlines a key finding of our national study, that neurological conditions cannot be addressed in isolation. However, the health system is often challenged when a person has two or more health conditions, particularly when a mental health condition is involved. For example, if a person with a neurological condition also has a diagnosis of a mental health condition, he or she may be excluded from care. An important way to improve access to services and optimize outcomes would be to educate and support health care providers in how to best address the functional impacts and needs of individuals and families.
My family has been both supported by and involved with the Parkinson Society of Canada throughout our journey, and through the Parkinson Society, we became aware of the national study. My wife and I were excited by its possibilities and supported the work through our participation, including attending the first progress meeting of the study researchers.
Being able to bring our family’s experience to the study through the researchers has been profound. I see my voice in the report. I see my wife’s voice in the report. I understand how this new evidence can be used to improve my family’s quality of life. I can take the report and advocate for action.
The report identifies key knowledge gaps and better ways to meet and manage the health needs of Canadians affected by neurological conditions. As a caregiver and a representative of NHCC, I encourage the Government of Canada to build on the study’s momentum and the successful partnership between NHCC and the government.
For your consideration, we have provided four recommendations in our written submission to the Government of Canada. The government is recognizing neurological conditions as a public priority and the momentum within the neurological community is high. We have a key opportunity right now to make a difference in the lives of people living with neurological conditions. Let's move forward together.
Thank you for your time.