For Optimal Healthcare, Doctors Need to Speak to One Another

When patients get conflicting information, communication may be the answer

Jennifer van Amerom avatar

by Jennifer van Amerom |

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My family has recently become obsessed with the “Overcooked!” video game. With up to four players, we work against the clock chopping vegetables, frying fish or meat, and assembling plates, all while going up against obstacles like the frozen tundra or mice that steal your supplies. It’s incredibly stressful; the only way to win is with clear communication and strategy. In this game, you can’t have too many cooks in the kitchen.

The game is also a great way to explain what navigating the healthcare system is like. For the first 11 years of my neuromyelitis optica (NMO), I worked with the same team of doctors. My neurologist took the lead, my rheumatologist managed medication that my lead needed support on, and my general practitioner (GP) refilled my prescriptions and managed my overall health. At some point, we even added a psychologist who specialized in patients with rare disorders.

But then things got messy. My GP left his practice. My neurologist no longer needed support of other doctors for my treatment, so I lost my rheumatologist; we added a second neurologist instead. And with the pandemic, my psychologist is managing a lot more patients, so we haven’t had a chance to connect. Add in new tests, routine bloodwork, and a pain management clinic, and it’s easy to understand how patients grow frustrated with our healthcare system here in Canada.

Over the years of living with NMO, I’ve come to realize that what works for some patients doesn’t necessarily work for me. It also means that both treatment plans — theirs and mine — may be right, but they may also both be wrong. While that might sound confusing, there are constants that all patients experience.

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The need for multidisciplinary management

In a perfect healthcare system, doctors would have all the answers. They would never disagree with one another and never provide conflicting information to their patients. This, of course, will never happen because doctors aren’t fortunetellers. At best, they’re making educated guesses, made even more challenging when they look at things solely from the lens of their expertise.

While conflicting information can make me feel like I’m a real-life character out of a video game trying to manage what to do next, it’s in my best interest to get different points of view. We can’t be great at everything, so as a patient I try not to feel frustrated when I’m referred to another specialist.

The term “holistic healthcare” is when doctors stay in their own lane, but manage to communicate with other doctors and develop a strategy for the patient. This makes sense to me because our bodies work as a united front. We can’t silo any treatment, organ, or part of our body.

The key is to find a way for all the doctors to speak to one another.

The professional patient

Ask any patient with a rare disease, and we’ll tell you that managing our health is a full-time job. It feels particularly cruel to me that on any given day, I start with less energy than the average person. With all the medical appointments, however, I have so much more to do.

Even more difficult is how some patients struggle with their organization. There are medications and doses to manage, regular bloodwork to complete, and various appointments to attend. I only half-joke that I need a whiteboard to keep track of my medical needs.

Living in Canada, we have a diverse population, so adding in miscommunication from different languages, patients find it even more challenging to navigate the healthcare system. The only solution is time, patience, and — like everything else in life — experience.

When I was new to the medical system, I was like an infant: unsure of the medical world and helpless. Now, I’d consider myself a professional patient.

The communicator

During the pandemic, securing a new GP was impossible, so I’m grateful that a new doctor finally accepted me a few weeks ago. My previous GP was my go-to person. While my specialists ran tests, prescribed treatments, and managed doses, my GP told me what they were thinking and why.

My GP played an important role in my NMO journey. He was always my point of contact, my first and last call when I had to make difficult decisions. Without this key role filled, patients can easily miss important information.

Even the most seasoned patient can feel lost trying to navigate healthcare.

If you’re struggling with any part of your healthcare, the greatest resource for me has been the nursing team and the administrators that work closely with the specialists. If you can establish a relationship with them, they may end up being your communicator and greatest advocate for care.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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