I never thought I’d become a professional patient.
From the time 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 MS. While I couldn’t continue my schooling, I was able to get married and also 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 help clients get back to work.
After the birth of my first daughter, however, the MS returned with some pretty 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 similar to 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 and being 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.
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. But I felt that doing this was an important part of my being able to be 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 event 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 is it 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.
Our main goal as patient advisors is to make sure the voice of the patient is heard, so that care can become more patient and family centered. We are not there to bash people or to place blame, but rather to work with the staff to help fix problems so things are better for the next patient entering the 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 happy when new families and patients join. I deeply care for those who have saved my life so many times. But 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 other patients.
We’ve already achieved some pretty 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. And I’ve heard positive things from physicians; 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. But I feel that we are succeeding, with patients and families both reaping the benefits of these changes.
Adding my voice, perspective to a larger dialogue
Blogging feels like the next step in my evolution as a professional patient. I see it as a way to help bring the voice and perspective of patients and families to an even wider audience, to become part of a larger dialogue about making health care better. Before HQC invited me to contribute to Qreview, I had contemplated starting my own blog to help 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 your own advocate 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 possible. 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 trying to help people.