Claire Snyman was diagnosed with a non-cancerous brain tumour in 2010 after a sudden onset of vertigo, headaches and dizziness and quickly found herself navigating the complexities of the health care system.
“I turned from being what I call a routine patient into someone who was now thrown into the healthcare system and became a non-routine patient -- someone who had multiple specialists, multiple appointments, multiple medications, and I very quickly realized I needed to take more control of my own health and not just leave it up to my health care team,” she says.
Claire's desire to become her own advocate was strengthened in 2012 when her health took a drastic turn. She began experiencing migraines and vertigo attacks, which did not go away despite her GP’s efforts. She was shuffled back and forth between her GP, who insisted she needed a CT scan, and her neurologist, who believed she was fine. “It was actually only after continually asking and asking questions, - Is this not my brain tumour? I feel like something’s not right within my body? - that it was found that my brain tumour had doubled in size," she says. "My brain was actually swollen and I needed to have emergency surgery.”
Despite the issues Claire experienced in receiving timely care, it’s taught her a lot about the power of the patient voice and the positive role it can play in an individual’s journey through the health care system. “I love this saying, I picked it up along the way: health care is a participatory sport. It is not a spectator sport," Claire says.
Since her recovery, Claire has been able to fulfill her desire for patient advocacy work by authoring a book, Two Steps Forward – Embracing life with a Brain Tumor, getting involved in research and speaking at the TedxStanleyPark in 2018, where she talked about the importance of patients becoming more engaged in the health care system. Her most recent advocacy work lies with the Canadian Medical Association’s new advisory group, the Patient Voice.
The CMA Patient Voice
The Canadian Medical Association (CMA) is a voluntary association made up of physicians working together to advocate for the health of Canadians. Their primary mandate is to “drive positive change in health care by advocating on key health issues facing doctors and their patients.” One way they are pursuing this mandate is with the CMA Patient Voice, a new advisory group comprised of people with lived experiences and caregivers who plan to lend their perspectives and experiences to the CMA’s work.
“Issues that are important to patients and the public are really fundamental to what the CMA wants to focus on, she says. "One of the mission and visions of the CMA is to empower and care for patients. So, if that’s what they are driving towards then it’s really important they have their finger on the pulse to find what is important to the patient population. So that’s what the CMA Patient Voice is hoping to do.”
Claire is among 14 patient advocates selected from over 500 applicants throughout Canada and wants to share what she had learned during her patient journey with others. “It ended up saving my life. If I hadn’t asked those questions, if I hadn’t been activated, I wouldn’t be here today. So I started looking at ways to give back, and ways to try to help others to be inspired to put their health in their own hands.”
The Patient Voice held their first inaugural meeting in December 2018 in Ottawa. While they're still finalizing the exact details around their involvement, Claire is certain that their work will have a positive impact for Canadians living with complex health issues, including chronic pain. “I think one of the areas that will be looked at is how do they take the CMA Patient Voice to a much broader level? Because we are only 14 voices, so how can we tap into the broader public voice and get more input and get more information and get more understanding of what the needs are out there so that can be brought back into the work of the CMA?"
Thoughts on patient advocacy
Claire says having a community can play a positive role in managing chronic pain. “Sometimes it can seem like the day to day is so hard to get through, and when you do find that community you can belong to, it’s really critical. Being able to give back when you have found ways to manage or tools or so forth is really rewarding, and I find that it’s a two-way street."
As someone who is very involved in patient advocacy work, she’s also aware that it’s important to prioritize her personal health too. “Always remember that you have to manage the role of advocacy vs. your personal health," she said. "I have to remind myself to do that. You can only be a really strong advocate and strong supporter when you’re looking after your personal health at the same time. Make sure when you speak to the organization or association [that you're working with] that they are aware of your needs."