For several years now, I’ve been a patient-partner for my own care. This has been important because, as someone living with cystic fibrosis, I’ve learned more about my disease and have been able to talk about it with my health care team. All my life, I’ve been sailing on this big cruise ship that is the health care system. I have experienced some important failures as well as great successes, including my successful bilateral lung transplant six years ago. I’ve always received the highest quality care in a system that is often out of breath and travelling at top speed. I’m very grateful to all health care staff.
I wanted to do something to express my thanks, but I didn’t know if there was anything I could do. For a long time I had been carrying around a large “backpack” where I had stashed my experiences of receiving care and living with a chronic condition, but I could never figure out if this backpack had a purpose to serve. I talked about it with one of my doctors and a door was kindly opened for me. That’s how I became a patient-partner.
For the past several years I’ve been collaborating with the SPOR Pan-Canadian Primary and Integrated Health Care Innovations Network (PIHCI Network), of which Réseau-1 is the Quebec member. As part of this network, I’m one of the Quebec representatives on the Pan-Canadian Patient Council. Every month, for a little over two years now, I’ve been meeting with about ten colleagues from every province in the country. We get together to talk about best practices in patient partnership across the country. We talk a lot. This networking is rewarding because it breaks down some barriers. It helps us to better understand the partnership realities of each province and, at the same time, to work collaboratively.
One thing is for sure, the atmosphere is definitely dynamic and there is no shortage of projects!
At the end of last winter, things were going along well, and then came March 23rd. Quebec was put on hold and a series of similar measures were deployed in all Canadian provinces. Despite all the turmoil created by the pandemic, we continued our activities. And it was my involvement as a patient-partner on the Pan-Canadian Patient Council that enabled me to get through the first wave without sinking. It was thanks to the strength of the group that we got through it.
Our March meeting, which had been scheduled for some time, went ahead as planned. However, as we went around the table at the beginning, several of us had to admit we weren’t doing well: anxiety, stress, trouble concentrating, things were not looking good. We had a thousand and one questions on our minds, and no answers. It was very scary! That day, when it was my turn to speak, I burst into tears and said, “I’m afraid of dying. I’m afraid I won’t be able to receive care.” I had become obsessed with the issue of “non-Covid” patients, an issue that still worries me just as much, I have to say.
As a group, despite our individual difficulties, we decided to continue our activities, if only to overcome our isolation, among other things. From this common decision, an interesting proposal arose: what if we saw each other more often? We accepted the idea with great enthusiasm.
While we each experience the pandemic in our own way, no one should have to spend every day coping with this kind of obstacle in fear, isolation, and without resources. We increased the pace of our meetings to twice a month. The meetings were more informal so we could support and encourage each other. These meetings became a beacon in the fog that had invaded my daily life since the start of the pandemic. They helped me to regain confidence in my abilities and to feel less alone with my “covidian” worries. Eventually, I was able to tap into my “backpack of experiential knowledge” where I found resilience and a great capacity to adapt, which have helped me to live better since then.
This summer, the patient-partners in that group participated in the PIHCI Network webinars, and we had the privilege of hosting one: Rendre l’invisible visible: le pouvoir des partenariats entre les patients et leur communauté (“Making the invisible visible: the power of partnerships between patients and their communities”). We’re also planning to produce podcasts in the near future, where we will discuss patient partnership based on each individual’s experiences. Our meetings have gone back to a regular schedule, and we’re doing well despite the second wave now surging across the country.
Sometimes, when I’m asked what it’s like to live with illness, I like to use the image of a house of cards. Through the winds of adversity, I’ve had to deal with some really surprising things to be able to move on more effectively. I’ve rebuilt certain aspects of my life. I’ve gone through a lot of grief and major changes. It is a complex life that has become meaningful through happiness, resilience, and above all, tenacity. Always remember that when a patient-partner speaks to you in the context of a patient partnership, it’s done in a spirit of openness, generosity, and often because he or she considers it to be an important added value in the broader picture of the health care system.
Recently, I’ve had conversations with patient-partners who tell me they’ve had no news of the research teams they were involved with. Some even said they felt abandoned, as if their contribution didn’t really count. Times are hard for everyone; a short follow-up, a callback, a little “hello” can make a difference in a situation where many patient-partners have been isolated for several months and are going through difficult times.
Even though I present my own opinion in this essay, I’m speaking here as a patient-partner member of the Pan-Canadian Patient Council. Everything I’ve said above are purely my own thoughts. Don’t worry, I don’t pretend to speak for all patients. I want to make it clear that I’ll be here, once the pandemic is over, ready to help you, to collaborate in sharing my experiential knowledge, which I hope will continue to contribute to the enrichment of primary care. My wish for us all is that whatever we learn from this will be used to improve the quality of patient care.
Having said that, I can also tell you that, after eight months of confinement, I’m really looking forward to seeing you for “real”. There is a light at the end of this long tunnel—it’s called 2021.
Karina Prévost, Patient-partner, member of Réseau-1 Québec