This article is the final in a series following the launch of the Neuroscience IPU. Staff who specialize in stroke care from across the CIUSSS have come together along with patient partners to form a single inter-disciplinary team to provide stroke survivors with timely, customized care.
When stroke survivor Luis Rivas was asked to participate as a patient partner in developing the stroke trajectory for the Neuroscience IPU, he was intrigued, if not a little baffled.
“I wasn’t familiar with the term, so naturally I turned to the internet, and was startled to discover that I had committed to help build Invisible Pink Unicorns,” he recalls with a chuckle. Of course, Mr. Rivas quickly found out that the initials really stand for ‘Integrated Practice Unit’, but the confusion that he experienced illustrates the gap that often exists between the clinical team and the patient.
“This unique perspective of the patient is integral to the teams that map out trajectories, because it helps clinicians to identify and close up those gaps in care,” points out Sophie Leduc, a Quality, Risk Management, Accreditation and Patient Experience Specialist who is responsible for the patient partner dossier. “That’s why Luis has had such a great impact on the IPU team as a patient partner. He has drawn attention to the simplest things in his life that were affected by his stroke that we as clinicians had not directly experienced. If clinicians propose or know about a, b and c, as a patient partner, he expands their view to d, e and f.”
Mr. Rivas says that when he was asked to join the IPU Neuro Team, their first step was to create a diagram representing all of the stages of the stroke trajectory. “When we ended, it was a very messy schema,” he remarks. “It had arrows going backward and forward, and I found it hard to recognize my own trajectory. I know how I started, how I ended, but in the middle there was a lot that happened that I didn’t know.”
At every step of the trajectory, Mr. Rivas attests, healthcare professionals are very involved in the patient’s evolution, providing superb and thorough care—the weakness lay, instead, in the in-between stages. “You move from a very positive state, where you are progressing, and then there is a jump into darkness until you reach the next stage. For me personally, it was less a medical hardship. The cost of those voids was on a more emotional level. Once you’re in that blind space, you lose momentum, you lose motivation.”
“Your OT, your physio, your speech therapist, they’re no longer beside you to give you the rhythm of the day,” he explains. “That adds up to feeling alone during the in-betweens. You are pushing entirely on your own to rebuild your day-to-day activities, to restore your routine, to maintain your physical activity level.”
As an example of a bumpy transition, Mr. Rivas describes the setup of the kitchens in rehabilitation centres, where patients practice their daily tasks in preparation for their return home. The simulation kitchen is spacious, he says, and optimally designed for people to maneuver easily around equipment. Nurses are also on hand to ensure that patients are safe and at ease.
“In that setting, there are no worries,” he says. “In contrast, though, my kitchen at home is about a fourth of the size of the kitchen at the hospital. That makes any movement far more restricted and complicated. Sometimes I find myself holding a large pot of hot water, and I think ‘wow, if I drop it for whatever reason, that will not end well’. So I have to remain calm, despite the hazard, and quickly figure out where—and if—I can place the pot somewhere safe.”
The Early Supported Discharge program, which offers therapy directly in the client’s home, similar to that provided in in-patient rehabilitation centres, was piloted in 2017, several years after Mr. Rivas completed his in-patient trajectory.
“I wish the program had been available when I was recovering from my stroke,” says Mr. Rivas. “If I had had my OT with me in my own little kitchen, she would have helped me to work through the difficulties that I never confronted in the simulation space. When you get home, your reality is entirely different, and it is the one that you will face every day. You encounter struggle after struggle.”
“But I don’t like the mentality of complaining,” he insists. “So I become involved. I owe it to the system to do my part to improve it. I say that with my engineering hat on. We know what we have, but now let’s think, how would I have liked my trajectory to be?”
Stroke survivor brings second leg into the equation
It is a question Mr. Rivas is deeply implicated in resolving, says Ms. Leduc, notwithstanding—or perhaps because of—all of the life-altering struggles he faced as a result of his stroke, “Whether volunteering as a patient partner to help develop written material for patients and families or accompanying the Quality team through all their improvement projects and action plans Luis has been tireless. He will still travel to the JGH to attend the Patient and Family Partners Advisory Council meetings, as well as to other sites, such as Constance-Lethbridge and Richardson Hospital, to provide his invaluable feedback, his opinion, his time.”
Even in the years predating his stroke, when Mr. Rivas was in strong physical form, he recognized the value of, as he calls it, ‘bringing the second leg into the equation’. He was the member of a swimming team whose coach left, he says, so he quit the team and stepped in as their coach. “I know what it’s like to be in the water, so I thought it would be an important point of view for the person on the outside, screaming at the ones in the pool!”
“Similarly in healthcare, there are many devoted professionals thinking very hard about solving a problem, but they are missing our point of view as patients. We are part of that process, so we need to be a part of the solution as well,” he says. “The multi-disciplinary teams want to make resources and services more effective. They are preoccupied with giving care in the best way. But what about the perspective of the person who’s on the other side of the service? The patient must also determine what is ‘best’ so that they can receive their care well. If the clinical team’s idea doesn’t make a difference to us, then there is no point.”
Mr. Rivas says he is very gratified that when devising an ideal trajectory, the stroke team did a thorough analysis of his experiences in recovery and integrated the views he shared as a patient partner. “I arranged my life to be able to help the system progress, so it’s heartening to know that my input was valued and used in a meaningful way,” he remarks. “I am also very happy to learn that the CIUSSS has requested more of us, to participate in a whole range of projects.”
Integrating patient partners across network
The Patient Partner program supports existing partnerships within the Neuroscience IPU—between the stroke teams, the network’s missions and stroke organizations. “Together, they form the stepping stones along the continuum of care to help stroke survivors move smoothly through their recovery,” says Ms. Leduc.
Variations on Mr. Rivas’s successful patient partnership with stroke teams can be found in each of the missions across the network, she notes. There are currently several dozen patient partners involved in quality improvement projects. They can take part in a variety of ways:
- Join a committee
- Participate on the Patient and Family Partners Advisory Council
- Engage in public speaking to help educate others about patient and family-centred care
- Work on special improvement projects
- Review written material, such as a pamphlet on diabetes, to ensure that it is easily understood by the public.
- Co-developing and reviewing policies and procedures
To qualify, a candidate must be a former healthcare user or a family member who accompanied their loved one within the previous five years. They are prepared to share their perspective on the care they received, the services they were offered, and on their general path through the health system.
“It’s important to note that patient partners have reached a stage of closure from their experience, from their grief or pain,” says Ms. Leduc. “Sometimes it’s not the right moment to participate. With Luis, for example, even when recounting the worst moments in his journey, he tells his story with optimism. Once they’ve reached that place, we provide training on all aspects of partnering, such as confidentiality and how to communicate in a group or as part of a committee.” The Quality team will then identify the groups that would benefit from their perspective and knowledge.
“Patient partners help us understand what matters most to patients and their families when they come through our doors,” says Ms. Leduc. “Their collaboration is essential for us in providing person- and family-centred care, by bringing support to the clinical teams and hope to the people who move through the complex healthcare system.”
Interested candidates can apply to become a patient partner on the Volunteering website.
