Everyone has a story

22-07-13 Everyone has a story

Dealing with my illness, day in and day out for several years, has made me somewhat of an expert. Unfortunately, when it comes to making decisions about my care, I am sometimes the forgotten party.

Managing my illness includes weekly intravenous immunoglobulin (IVIG) treatments. These treatments, which each take about four hours, help keep me healthy by building my immune system.

 Years of testing and treatments have left my veins too fragile for intravenous by needle, so I have a port (portacath), which gives my providers easy access for my treatments. Last December, I got a clot in my port. Because it’s such an important part of my regular treatments, I was put on the list to have a new one put in.

After a few months with no word about my surgery date (I think I was forgotten about), I asked my doctor to kickstart the process, and I was contacted to book the procedure.

I had to decline the first date the scheduler offered me. I knew none of my family members would be available that day, and because of the complexities of my care, I need to make sure someone is with me post-surgery.

She offered me a second date. As I reviewed my calendar, I realized that I had a dental appointment that day, and told the scheduler that wouldn’t work either. Unfortunately, being sick means I need many appointments. My schedule is full of them.

 Apparently, this upset the clerk. It was obvious by her tone when she advised me to rebook my dental appointment because, in her words, “those are easy to reschedule”.

Unfortunately for me, this is not the case at all. I have an anaphylactic allergy to latex, so my dentist needs to make special arrangements for my visit. My appointment had been booked months ahead so the dentist could prepare a safe environment for me.

The scheduler didn’t seem to care about my issues.  It must have been frustrating her that I wasn’t readily accepting the dates she was offering me – not just once, but twice. Her response was, “Everyone has a story.” (I swear I could hear her roll her eyes over the phone) And then she proceeded to advise me that I would be moved to the bottom of the waiting list if I did not accept the date she had offered me for my surgery.

At this point, I didn’t react rudely, but I was definitely annoyed.  I worried, not only about myself, but about other patients who encounter the same type of situation. What happens if they do not speak up for themselves?

I did speak up.  I went to the main schedule manager and told my story. I was eventually heard. A surgery date that worked for me was found.

I don’t expect an apology. Although the manager of scheduling did apologize for what I endured, I do still wonder about the scheduler’s comment: ” Everyone has a story.”

She’s right. Everyone does have a story. It is our stories that make us people first, before we are patients.

This video that I posted previously is a great reminder: Even when our stories go untold, they deserve to be considered and respected.

I’m sure the scheduler encounters difficulties every day, trying to work around the various commitments of patients and providers to book procedures.

I’m sure that she sometimes encounters frustrating situations and behaviour.

I’m sure she has good days and bad days, in her position.

I’m sure that either she, or one of her family members or friends, has had a medical procedure.

I’m sure that she too, has a story.

It’s too bad that mine was so easily dismissed.

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18 Responses to “Everyone has a story”

  1. Eugene Thiessen
    July 23, 2013 at 4:23 pm #

    Good One Heather,
    Lisa’s comment superseded mine with the sentiment that keeping in mind that everyone has a story can reduce so many opportunities for stress day to day. Patience, acceptance and understanding take the edges off a lot of situations that can pile up frustration day to day.This is a learning opportunity for me daily.

    • Heather Thiessen
      Heather Thiessen
      July 24, 2013 at 10:14 am #

      Thanks Gene. Exactly. Thank you for the support and your wise words. Take care

  2. Dale Hary
    July 23, 2013 at 12:44 pm #

    What an inspiring but frustrating story to read and feel every step of the way.
    I so agree with you that those of us with stories must speak up for ourselves and others until needs are met and we are no longer put into the category by many health care workers and “well” persons of being just difficult. Until they find themselves in the same or similar circumstances, I feel that the majority of the public (which includes our Health Care System workers) unfortunately at times have little to no genuine idea of what people with stories go through on a daily basis both physically and emotionally. This is not meant to paint them all with the same brush but part of
    the answer it seems is to further educate people in their own field. I was a good R.N.
    but now as a very handicapped person I have learned still more from the other side
    of the fence. God bless you and thank you for speaking out for yourself and others.

    • Heather Thiessen
      Heather Thiessen
      July 23, 2013 at 3:24 pm #

      Thank you Dale.

      When I read your comment I was actually brought to tears. It makes me know that this journey I am on to make sure no patient endures what I have only helps when I tell my stories. I know how worried and afraid some are to speak up. So I will continue to speak up educating both patients and staff. I am confident we will get there.

      Thanks again.

  3. Catherine Delaney
    July 23, 2013 at 12:33 pm #

    Thank-you Heather, for your tireless efforts to bring patient stories and insights to light!

    • Heather Thiessen
      Heather Thiessen
      July 23, 2013 at 3:25 pm #

      Thank you so much Catherine. I appreciate your kind thoughts.

  4. michele cozart
    July 23, 2013 at 9:16 am #

    Well said Heather! A very good reminder to hear all the details before jumping to a conclusion!

    • Heather Thiessen
      Heather Thiessen
      July 23, 2013 at 9:33 am #

      Thank you so much Michele. It is so true, in everyday life but especially when it deals with medical issues.

  5. Steven Lewis
    July 23, 2013 at 8:53 am #

    Thank you Heather for articulating what no doubt happens to thousands of people a month in Canadian health care. To transform this into a QI advance, I would like to know how the apologetic manager has dealt systematically with the problem to ensure it doesn’t happen again. Did it cause any reflection about how the unit does its work? Was there a booking clerks’ huddle to review the situation and come up with a reliable fix? Have patients ever been invited to a meeting to advise on policy and practice? Does the unit gather feedback from patients on their experience trying to arrange appointments? Did the manager make a commitment to Heather to report on what has been done to ensure no one has to go through what you went through again? And when/if the senior leaders and/or the SHR board read the story, what, if anything, did they do? I know you have quite enough to do already, but I think it would do a lot of good if you actively followed up with the manager to hold the system to account for not just apologizing (a good thing), but improving (a better thing).

    • Heather Thiessen
      Heather Thiessen
      July 23, 2013 at 9:39 am #

      Thank you Steven. I appreciate your response. To be honest, no, I have not followed up but plan on doing so. I was very worried to come forward but a very wise and good friend pointed me in the right direction to speak to the scheduling manager. I know many can learn from this situation but it is hard. My hope is that those who do the scheduling will have an opportunity to learn from my words. It’s hard being a patient let alone speak up when things don’t go right. Never want to jeopardize our care. I promise to follow up and report back to what I find. Stay tuned.

      • Deb Morton
        July 23, 2013 at 11:25 am #

        Heather, I totally agree with what Steven says. That is what QI’s are for and look what you have accomplished with the Family Centered Care because of speaking up!

        • Heather Thiessen
          Heather Thiessen
          July 23, 2013 at 3:29 pm #

          Thanks Deb. I have been pondering all afternoon again what Steven said and wonder why I need to follow up and instead why that scheduling manager is not getting back to me and letting me know what Changes have happened since this incident. I don’t think it should be once again be put in my hands to find out the outcome. If we want patients and families to continue to come forward with their stories I think we need to make sure they get the feedback. Once this happens I bet more will come forward.
          I will follow up but do hope I won’t have to in the future.

  6. Dennis Kendel
    July 22, 2013 at 4:07 pm #

    Thank you so much for sharing this story, Heather. It drove home to me the point that all us sometimes assume that the way things in healthcare work for us should be just fine for everyone else, even though their situation may be very different than our own.
    I have a confession to offer. Until I read the portion of your post that explained how difficult it is for you to reschedule your dental appointments, I also leapt to the assumption that the scheduler did that getting a blocked portacath should take precedence over a “simple” dental appointment.

    That was until I listened to your whole story! We often rush to judgement about people’s needs without hearing their whole story.

    • Heather Thiessen
      Heather Thiessen
      July 23, 2013 at 9:41 am #

      Hi Dennis.
      Exactly. Many do not listen carefully and hear the whole story. I know I may be the exceptionally very complicated patient but everyone does have their own needs that are just as important as mine. I appreciate your honesty!!!

  7. Lisa Clatney
    Lisa Clatney, CFCC Specialist
    July 22, 2013 at 2:56 pm #

    Your post made me think of a recent line in a book I am reading: “There is no view from nowhere”. Everyone brings their own perspective, their own story, to every interaction. We need to recognize this, and work in partnership to find solutions that will work. Thanks Heather, for reminding us of this.

    • Heather Thiessen
      Heather Thiessen
      July 23, 2013 at 9:42 am #

      Thank you Lisa for your response. I’d be interested in knowing the book. It could be something to share with everyone who works in healthcare!!

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