Communication Breakdowns in Patient Care

Remember when I told you guys that I’d be getting more aggressive with Plasma Exchange treatment? Well, when there’s a breakdown in communication between teams of doctors, between doctors and administrative staff and between doctors and their patients, things get confusing and a patient such as myself is caught in the middle and is the one who ultimately faces the consequences of this breakdown. I have NOT been able to receive more treatment yet.


Let me explain. My doctor told me that we’d need to increase treatment. She specifically mentioned a treatment schedule for me to work with – week one would be treatment twice a week, week two would be treatment once a week and then we’d repeat this cycle for the next 6 months. It’s been weeks since I’ve seen her, but I’ve only been allowed to have treatment once a week. There has been no increase in my treatments. I don’t feel very good, so of course this is a huge problem for me. My POTS is becoming more active again, migraines are destroying me and my stools now resemble a rainbow.

I spoke to the administrative team at my Plasma Exchange office. All they told me is that they’ve received no order stating that I require more treatment over the past few weeks. I of course became quite concerned. What’s the slow down?

The means for me to feel better exists, it’s right there. But somehow, it’s still out of reach. Having my symptoms act up is not a game. I have a life that I want to live. There are so many things that I want to do, but a lack of communication is what’s in my way.

I call my neurologist’s office and get told by an angry member of her staff that they know I’m getting treatment once a week, they sent to request over, and asked why am I causing a problem about all of this. I tell mention the plan my neurologist and I came up with was. She tells me that all my neurologist stated was that I’d get treatment once or twice a week, and for some reason, getting one treatment is apparently good enough for me right now so I should have no complaints.

Why am I getting yelled at for trying to receive the care I need? How am I doing something wrong as a patient? How is standing up for myself a problem?

A member of my treatment centre’s team walks in and tells me she got a call from my neurologist’s offer. I clearly ruffled some feathers here. I am told that they did get the request from my neurologist’s office, but the hematologist here has to approve it, but he’s on vacation now. I have to wait until he comes back to try to figure out how I can receive more well needed rounds of treatments.

It’s frustrating. All I want is to feel better.. and you know what’s holding me back? Technical paperwork. How is this fair? Why do I need to suffer the consequences from their issues? Is being sick not a consequence enough?


Can you spot the breakdowns in communication here? Let’s go through them.

Patient – Plasma Exchange Administrative Team breakdown in communication:
I was told that they received nothing from my neurologist’s office. It turns out that they received the documents, but they were waiting on my hematologist to potentially order more treatments.
How am I supposed to know that ‘we haven’t received anything yet,’ means that they did receive what was needed, but they were waiting for approval? I don’t inherently just know how their paperwork process works, why wasn’t I just told it was pending approval rather than saying nothing was received?

Patient – Doctor breakdown in communication:
Why was I told that I’d be following a certain treatment plan, but my doctor requested something different?

Doctor – Neurology Administrative Team breakdown in communication:
I ended up in an argument with the neurology staff because she didn’t believe me when I told her what my neurologist and I decided because that’s not what the doctor relayed to her. I have no leg to stand on because my neurologist clearly told her staff something very different than what I was told.
How am I supposed to get the care I need if my doctor doesn’t properly inform her team of what I require?

Doctor – Doctor breakdown in communication:
My doctor is away on vacation, but his temporary replacement wasn’t even informed of the request sent by my neurologist, on top of my neurologist sending out something different than what she told me.
How would I get the care I required if my doctors aren’t informed of any changes my other specialists made, and that my specialists aren’t even communicating the right messages to my team of doctors?

'According to the hospitals new electronic patients records system he's pregnant.'

When things like these happen, the patient is who faces the consequences. Communication is vital to patient care. Many issues are systemic, where it takes many pieces of the puzzle to be pieced together to find diagnosis. However, Western medicine is segmented, one specialty solely treats one portion of the body, which is just one piece of the puzzle. Doctors need to be able to properly communicate to see the big picture, solve the puzzle and find the right diagnosis and treatment plan.

For most of us, our doctors do not communicate, which causes a slow down in trying to reach a diagnosis and prescribe appropriate treatment. This lack of communication can also be dangerous, because one doctor may give you medication to treat one issue, that can potentially interact with medication given to you by another doctor and not even know it. Medication interactions can be fatal. Medication may also be prescribed to help one part of your body, but dangerously worsen symptoms in other parts of your body. If one specialist does not consult the others, health care and medication can honestly just make things worse for us as patients.

Honestly, if my mom and I weren’t afraid to get aggressive in trying to receive care as a patient, I’d probably be undiagnosed. I’d probably still be in my wheelchair. I’d probably just be rotting here. I carry all the results from all of my specialists to all of my doctor appointments to ensure that all of my doctors know what’s going on with my diagnoses and treatments. It’s silly, as a horrendously sick person, why should I have to do all the work? Why do I need to fight for healthcare? I thought the system was there to help us with ease. Why is trying to get better actually just a fight?

Our bodies are made up of many individual systems, from your circulatory system to your digestive system, but they all interact and intersect quite closely. It’s like a car, if one part of the machinery is malfunctioning, many other parts may not work because they all depend on each other to function properly as a whole. Doctors need to start seeing our bodies as an entire entity in order to properly treat us, and that begins with proper communication.


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