After facing challenges with her health since a young age, Leya Stringer decided to become a PVN Patient Partner in 2013 to share her experience and help improve the health care system. Four years and 30 engagement opportunities later, she wrote this blog post to tell us what it was like to start participating and what she learned throughout the years:
I’ve struggled with my health since I was 19: the year I moved to Saskatchewan to attend college. When I arrived, instead of heading to the college to settle in to my dorm room, I headed to the hospital to settle into a hospital room; my home for the next two weeks. I had pneumonia and a blood clot in my lung. After that I never quite felt healthy again. I wasn’t sick on a day to day basis, but I was sick often. If there was a bug floating around out there, it would find me and it always hit me harder than most everyone else. It wasn’t irregular for me to miss classes or call in sick for work and my energy level was usually quite low.
At 29 I spent another two weeks in hospital. This time in ICU with multiple blood clots in my lungs. After some time I was able to return to work but, unfortunately, poor luck and my health seem to be synonymous: a bad fall down a flight of stairs followed by a car accident a few months later would be my body’s last straw. I haven’t been able to work since 2011. My life has changed drastically over the past seven years. I went from being a working professional with an active life to being on disability and not really know where I fit it anymore.
In 2012 my sister told me about the Patient Voices Network. She could see that I was struggling to find my sense of purpose and thought it might be therapeutic for me to meet some like-minded people and to take part in something where the differences made would affect me and my peers. There have been some glaring errors made by health care providers during my health journey. Some of which could very well have been fatal. Though this bothered me, I never felt the need to ‘go after’ anyone because of it. At the same time, I knew I didn’t want similar things to happen to anyone else. I feel it’s really important that good comes from my negative experiences. So, I joined the Network.
The Anxiety of Participating in the First Engagement Opportunities
It took me a bit of time to take part in engagement opportunities. I wasn’t sure if I had anything valuable to add. I mean, yeah, I knew what went wrong in my situation, but how was that going to pertain to the bigger picture? And who in health care was going to listen to me? Then I realized something: I joined PVN because I didn’t want anyone else to go through what I went through. And a big part of why I ended up so sick was that I wasn’t being heard. So why shy away from being heard now? These health care partners are asking to collaborate with patient partners because they want to hear what we have to say.
At first I only answered opportunities that allowed me to stay in the ‘safe bubble’ of my home—mostly teleconferences. It wasn’t long before I’d not only become quite comfortable in sharing my perspective, but I was really enjoying it. I wanted to do more.
After a couple in-person opportunities I realized that it wasn’t so much my personal health experiences that I was drawing from, it was more my position in this world as a ‘consumer of health care’—a non-health care professional. And, wow, the health care professionals I engaged with were always so welcoming and grateful for my presence! Over the past four years I’ve taken part in nearly 30 engagement opportunities and currently I sit on six different councils and committees. I’ve even had a few opportunities to share my own personal health story. In all this time, at all these engagements, I have always felt valued and respected by all involved.
My Participation as a PVN Patient Partner: Now and Then
I remember going to my first in-person engagement with a head full of worries: would I be judged for my lack of education? Would I understand the terms and acronyms being used? What if my experiences aren’t pertinent enough or my perspective isn’t what they’d hoped for or expected? What will the response be if I oppose someone’s opinion or share the impact of negative experiences? Will they feel attacked? Needless to say, I was a wee bit anxious. But that all melted away within minutes of walking into the room. The hospital’s chief of staff quickly welcomed me with a warm handshake, thanking me for choosing to join the group. Throughout the engagement everyone did their best to avoid acronyms and uncommon medical terminology. Of course, it still happened every so often, but someone always explained (I’ve developed quite the healthcare acronym dictionary now! lol).
I’ve never had a negative experience with PVN. Prior to every engagement, my Engagement Leader (Carol Stathers, you’re amazing!) ensures that the health care provider and I connect. It’s so much easier to walk into an engagement knowing that I know, even if only virtually or via telephone, at least one person in the room. It’s been my experience that both the Engagement Leader and health care partner do everything they can to prepare and support the patient partner leading up to and throughout engagements. For me, this has helped to lower my anxiety and build confidence which, I feel, allows me to speak and contribute in a more open and genuine manor.
The collaborative process has been so enriching. I’ve learned a lot from a wide variety of health care professionals which has allowed me to become more open minded. These interactions have also built up the confidence I had lost when things weren’t going so well for me and my health. I can now properly assert myself in health related appointments in a way that supports my self-management and have become more sure of myself in everyday interactions.
The only struggle I ever have when it comes to PVN is balancing my self-care. This isn’t because PVN doesn’t support self-care; quite the opposite, actually: the Network has always been fantastic about patient partners, doing whatever they need to ensure they are well. The difficulty, for me, comes from the passion I have for patient engagement. It is so important that patients be a part of creating and changing the systems that affect a huge part of their lives – that support, create and maintain life. And what’s more validating than knowing, seeing even, one’s input and opinions put into action?