I forgot what it was like to be a patient in a crisis situation

January 7, 2020

Today I was reminded just how hard it is to be your own advocate when you are in a vulnerable position.

For the past few years, I have worked on building a tool to help people manage their health.  It’s helped them become more educated and informed with their healthcare and treatment plans, which at the end of the day should assist them in feeling empowered to advocate for themselves or their loved ones.  Today, a five-minute encounter managed to spark my motivation to continue being an advocate for patients navigating the healthcare system.

Tuesday January 7th, 2020 started as a normal day. I woke up feeling fine, got my kids ready for school, grabbed my big coffee and headed to my office. I had my third meeting of the day at 10 a.m. and when I stood to welcome the person into my office, I felt a sharp, stabbing pain in my right side and back. Weird. Feeling uncomfortable, I sat down, ignored the pain and went on with my meeting. By 10:30 a.m. I had to shift several times in my seat to get comfortable.

When my meeting ended at 11 a.m., I was feeling sweaty and nauseated. This was not good. I kept my 12 p.m. lunch meeting because selfishly, I was really looking forward to catching up with my colleague. We have massive goals for 2020 and I am anxious to get to work on them. During lunch I realized that I could no longer ignore the now constant throbbing pain. I barely made it back to my office to cancel my afternoon meetings. Reality hit and I had to do what I hate doing. I needed to go to the ER or Urgent Care.

My best friend picked me up from the office and we drove to the local Urgent Care Centre. I chose Urgent Care because they have most of the capabilities of the ER and are generally less busy, and truthfully, because they close at 9 p.m. so I cannot be admitted.

I spent the next six hours writhing in pain, feeling like I was going to be sick and waiting to have an ultrasound done. Finally, relief came in the form of medication delivered via an IV. That managed to take the edge off and allow me to rest somewhat comfortably. When the ultrasound was completed, no kidney stones were visible and the doctor provided me with two options.

I could either head to the ER for a CT scan and figure out what is happening or I could go home, rest and hopefully I start to feel better, knowing that if I developed a fever or the pain did not dissipate, I could go to the hospital tomorrow. Obviously I chose option two.

This is where things went sideways.  As the nurse was withdrawing my IV, I did what I always do – I asked her for a copy of the ultrasound report, my blood work and the discharge summary. The nurse proceeded to inform me it was against their policy to give patients copies of their medical records and that if I wanted them, I would need to submit a request to their Medical Records Office.I was taken aback.  

So I asked again, explaining that if I end up in the ER tomorrow, I will need access to the information. I said this knowing from past experience that the reports would not be sent to my GP within a quick time frame or maybe even at all. Acquiring these records helps to ensure that any treating physician has all the information they need to determine their appropriate course of action. I don’t want to waste my time or the province’s resources duplicating urine samples, blood work and ultrasounds. The nurse also told me that I don’t need a copy of my medical records because every hospital in Ontario has access to the same records system.

My years of navigating the health care system have taught me that this is not correct and kindly asked her again, to which she advised me that their system is used in all hospitals across Ontario.The nurse  informed me that any hospital go to has access to my records and finally, that my GP can also call to have the records sent over. I requested they send a copy of the information to my GP and the nurse was non-committal on that happening and again suggested I have my GP call or fax the request.

So, you know what I did next…Kristy Dickinson, founder of Chronically Simple, advocate for patient and caregiver empowerment, fighter for patient rights to their medical records? I left empty handed. I couldn’t help but feel beaten, angry, frustrated and ashamed of myself.

You see, because I have been well managed and am not in need of our hospital system as frequently or urgently in the last few years, I forgot what it’s really like. I cannot imagine what it must be like for someone who is not as well-versed in our healthcare system as I am trying to navigate what their role and responsibilities are as a patient.  I forgot how hard this was until I was confronted by it today.

Rest assured that I will come back at this problem with absolutely everything I have. Patients deserve better. Caregivers deserve better. Society has room for growth, as the state of things today needs to improve.  Rest assured I will not allow this to happen again. This is what motivates me to be an advocate for patients navigating the healthcare system.