Guest post by Heather Thiessen, Patient Partner
I never thought I’d become a patient whose life is constantly revolving around the health care system. Not only am I a receiver of care, but I’m also someone who uses her experiences within the health care system to help improve it, so the next patient who receives care have a safer and easier journey than I did.
Since I was a young girl, I’d always pictured myself as a nurse. I wanted to help people when they were ill and get them back to better health. I can still remember being so excited in my early 20s, when I was accepted into nursing school. Unfortunately, that dream was shattered when I was diagnosed with multiple sclerosis (MS). While I couldn’t continue my schooling, I was able to get married and start working as a long-term disability adjudicator. I loved that job, because I could use some of my education and, more importantly, I was able to help those who were sick and sometimes even help clients get back to work.
After the birth of my first daughter, however, the MS returned with some severe flare-ups. Then, around the time my second daughter was born, I was hit with a sobering second diagnosis: myasthenia gravis, another neurological condition like MS, which causes muscle weakness and fatigue. I could no longer work professionally and was forced to go on disability myself. Thus, began my journey into the health care system, not as a nurse, but as a patient. While I went through a lot with my MS diagnosis, being diagnosed with a second serious condition caused me even more stress and worry for my young family. How was I going to handle raising three young children and stay healthy? I knew deep down that this was going to be a bumpy ride.
Speaking up for myself
Living with two chronic—and sometimes critical—neurological conditions made me realize that I had to start standing up for myself and be an active partner with my health care team. No one else would be there to tell my side of the story or speak up for what I really wanted to do when my condition worsened or when it was time to explore new ways to get me back to my normal status. Talking to my doctors when I was well helped me get my worries across better. We discussed issues beforehand, so we were prepared to deal with them when they came up. Seeing myself as part of the team, all my doctors, nurses and I work together to ensure that I am part of all decisions, and of the plan that is unique to me, for I don’t follow the textbooks when it comes to illnesses.
Speaking up for others
The next chapter in my journey as a patient began when I was invited to be part of a patient panel for the Patient, Client and Family Centered Care Workshop in October 2010. This was a very emotional event for me, because I had to share some of my worst care experiences with many of the people who had cared for me. However, I felt that doing this was an important part of stepping into my role as an advisor. Many of those who heard my stories came up to me afterwards and told me they too remembered the events and were so sorry for the pain I felt. This was a learning opportunity not only for me but for them as well. After this, I was asked to be a patient advisor in both the Neurology and Rehab departments and the ICUs in Saskatoon. I attend two meetings a month with staff from these departments, where we discuss everything from when it’s appropriate to use the call light, to bedside rounding. I have brought up some of the deepest and scariest issues that I have endured, and which have caused me considerable pain. My issues are put on the table, alongside those raised by other patient volunteers.
Ten years later, my understanding of the healthcare system has deepened. My journey has been both critical and anything but smooth. Patient and health care professional need to respect one another’s position but also let down our walls and see that as we work together, authentically together, we see safer and more inclusive health care unfold. Patients and families will feel heard, included in the team, and will become more invested in getting home. Carers will be happier as they’ll have helped ensure that the best care was rolled out for that patient and best of all, we did it together.
Our main goal as patient advisors is to make sure the patient voice is heard, and to bring our lived experiences as learning opportunities, so that care can become more of a partnership. We are not included to ‘bash’ people or to blame, but rather to work with the staff to help fix issues and potential problems so things are better for the next patient entering the care system.
Is it scary being involved in these advisory boards? Absolutely! But when I see all the wonderful things that can come out of this work, I am happy that I’m involved and I’m excited when new families and patients join. I’m grateful and I deeply care for those who have saved my life countless times. Yet, health care, like most things, is not all rosy. If I can help make things better for staff, then I know things will be better for me and future patients.
We’ve already achieved exciting things. Family members or designates now have 24-hour access to patients. And families and patients have become active participants in bedside rounds. I’ve heard that families love these changes, because they get to ask questions and hear how their loved one is really doing. I’ve heard positive things from physicians as well; family conferences are shorter or eliminated altogether because they have already talked to the families during rounds. As with most changes, the role of patient advisors is a work in progress. That said, I feel that we are succeeding, with patients and families both reaping the benefits of these improvements. The patient and family roles have evolved over the years. Now we see patient partners in more leadership roles within health care, we see patients and families be part of our senior leadership teams’ interviews and be actively involved in decision-making. Personally, I have transitioned to a new role with Accreditation Canada and HSO and participate in tangible partnerships as a patient surveyor, on technical committees as well as a patient co-lead with Helene Campbell.
Adding my perspective to a larger dialogue
Blogging feels like the next step in my evolution as a patient partner. I see it as helping to bring the voice and perspective of patients and families to an even wider audience. It’s allowing our experiences to become part of a larger dialogue about making health care better, and for me, it’s also about supporting those who were just as lost or frustrated with the health care system as I used to be. I’ve seen first-hand that becoming a patient partner can really make a difference in how your care is managed; trusting myself and listening to my inner voice has helped make me a better partner in my own care and get the best possible care. I hope that my stories and experiences resonate with others – not only patients and families – but also people managing and delivering health care. I guess, in some ways, things have come full circle. I’m not a nurse, but I am still striving to help people. Heather Thiessen Patient Partner with HSO Co-Chair, Saskatchewan Health Authority Patient and Family Leadership Council
Heather Thiessen has been a patient in the Canadian health care system for the past 30 years, as she has been dealing with two chronic neurological conditions. Now in her 10th year as a patient partner with the Saskatchewan Health Authority (SHA), Heather has sat on many advisory committees, and been involved in people-centred care (PCC) education. She co-chairs the SHA’s new Patient and Family Leadership Council. Heather has helped to develop an orientation for all new Patient and Family Advisors and with the orientation for all new employees in the SHA. Heather has partnered with Accreditation Canada (AC) and Health Standards Organization (HSO) as a patient partner, faculty member, patient surveyor, as well as patient lead (in partnership with Hélène Campbell). Heather is a champion for PCC and works tirelessly to make sure the patient and family voice is not only heard but fully integrated in health care to improve the patient experience.