Life is like a box of chocolates. You never know what you’re gonna get

Chocolates

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.

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8 Responses to “Life is like a box of chocolates. You never know what you’re gonna get”

  1. Cindy Dumba
    July 5, 2012 at 1:31 pm #

    Hi Heather, it was one year ago yesterday that I had my totoal knee replacement. This personal experience is what led to me becoming a patient rep on the hip/ knee and surgical wait times lean value stream team. I should mention that I’ve seen great improvements over the past year and I’m so honored to be part of such an amazing team. There really are some wonderful, caring, determined health care professionals in our midst who are making great changes. My ” negative ” experiences came as a family member and advocate for my dear parents. Your first hand experience and knowledge is priceless, and the right people are listening. I anxiously await for your next blog……….thanks again………Cindy

    • Heather Thiessen
      Heather Thiessen
      July 5, 2012 at 4:50 pm #

      Hi again Cindy.

      I am so glad you became a patient rep on the hip/knee and also the surgical wait times lean value stream team. I am sure they were valuable experiences. I have had the honor of being on a few rapid process improvement workshops and really showed me the value of having patients and families included. These are interesting events and show how important the ” lean” way is.
      I would encourage you to continue your involvement in these and also on advisory boards. In order to help makes these work it is vital that we help. I know things are not perfect but little changes are huge strides. I know since I have been on the ICU advisory, we have seen more family involvement in rounding and also access for families or designated members to come in anytime. That’s huge for it was only a few short years ago visiting was restricted and participating in anything frowned upon. I know with time and working together the future in our healthcare system is going to be a leader to others in Canada.

      Keep up your good work too.

      Take care.

  2. Dr. Susan Shaw
    Susan Shaw
    July 5, 2012 at 10:51 am #

    Hi Heather! And congratulations on a wonderful blogpost. We can only what it really means to provide patient-centred care by bringing in the patient’s voice. I can’t believe it took us so long to realize at a system level what we were missing!

    It takes a lot of courage to share your personal experiences with us. Thank you for being so brave.

    • Heather Thiessen
      Heather Thiessen
      July 5, 2012 at 11:06 am #

      Hi Susan,

      Thank you so much. I agree it is a long time coming to get the patients voice heard. I am thrilled and excited to help provide that patients’ point of view.

      I know it is easier to speak up and be heard when dealing with physician like you who really ” get it ” and understand how important it is to listen. I know that there are many more wonderful caregivers out there doing this as well. My hope is that those who are a bit leary of the whole patient and family centered aspect come to see that is can be a positive experience. If I can be a help this to happen then I have achieved my goal.

      Thank you for all your support and kind words. That means so much to me.

  3. Cindy Dumba
    July 4, 2012 at 9:24 pm #

    Thanks Heather, I most certainly will get back to you. The client reps have been a wonderful resource and so helpful and caring. I did use their services many times during our hospital stays, and was encouraged by a very helpful compassionate lady to write the care for concern letter and to have our story told.
    What you’re doing is important work, and will impact many patients and their families. Your experience and knowledge is going to serve many people well. Again, I thank you, and look forward to hearing more! Take care………….Cindy

  4. Cindy Dumba
    July 4, 2012 at 9:00 am #

    Hi Heather,
    It’s so good to see your thoughts ( and experiences) written here. I was also a patient rep at with RQHR and attended the Health Quality Summit. You did a fantastic job, and I look forward to hearing more from you. I, like you always saw myself as a nurse one day, but instead, became an aide in long term care right after high school, then marrried and moved to the U.S. For a few years, thus giving up my nursing dream. While my health has been good, I spend many years in hospital with both of my parents who died too young. My mom passed away in October 2010, so when you mentioned that time……..it resonated with me. Our family also had so many negative experiences with our system. Our mother’s last hospital stay was a disaster, and I had no choice but to contact a client rep and write a concern for care letter on behalf of our mom ( and family). From that letter, came many responses, and thankfully, many policy and procedure changes. It’s a bittersweet feeling, but I feel some comfort knowing that our family’s journey will help others.
    I understand how rewarding it is for you to help affect positive change through your own experience and I urge you to continue. This is the best and only way that health care professionals can understand. I’m so thankful that they are now listening and truly asking for the patient/ family input!
    I look forward to reading more from you Heather. Many of your words are exactly what I would say……..and I’m positive many other patients and family members would tell you the same thing.
    I’ve been happy to be a patient rep on the hip and knee lean value stream, and also the surgical wait list value stream. You’re so right, there are a lot of good people trying to make improvements, and it’s wonderful to watch the process. I’m presenting my mother’s story to a committe ( board members, mgrs, etc.) in November, and I wait ” patiently” to become part of our patient and family centered care committee here in the RQHR.
    Thank you, Heather, for all that you do. Keep up the great work, and take care of you………………Cindy Dumba

    • Heather Thiessen
      Heather Thiessen
      July 4, 2012 at 7:38 pm #

      Hi Cindy,

      Thank you so very much for your note! Tobe honest I did not know what the response to my posting would be. I am delighted and encouraged by your reply. I am sorry on your mother’s passing and the negative experiences you have had to experience. I have also many experiences with the Client Reps in our hospitals and happy to report they were very helpful. So much so, that they are almost the first person my husband contacts when I get admitted. Just to make sure they are aware we are in the system, just in case we need them. I also understand the bittersweet feeling and also have had many things changed after my experiences. It is that feeling that others will not endure what I have had to that makes it that much better.

      This is wonderful that you are sharing your mother’s story in November. Please let me know how it goes. I know the first time I spoke was the hardest but so powerful knowing others were aware and will learn.

      I am excited for this blog and my wish is that with it many will understand the voice of the patient.

      Thank you again and I am excited for my next posting.

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