While waiting for results, I've been doing a lot of research online so that I would have information to help me make an informed decisions. One site I found has a discussion board of other people who are waiting for their diagnosis. I skimmed through some of the posts and found that nearly every person experienced exceptionally long delays in learning the results of their biopsy and exceptionally poor communication from their medical team.
This was my post in response to these threads:
The problem(s) you describe - the delays in notifying patients of test results, the poor communication, the fragmentation of patient care because we divide the individual into a myriad of systems to be treated by a myriad of specialists - is endemic to our medical system.Having an illness can be very scary. Waiting for answers can be even more so. But over the next few days, I'm hoping to provide readers with some thoughts about how you can be your best health advocate.
A close relative had a wicked case of pneumonia which led to an 8-day hospitalization and a seesawing recovery that lasted for months. He was treated by a series of specialists: an urgent care clinic physician, an emergency room physician, several hospitalists, several infectious disease physicians, a pulmonologist, a PCP, and an interventional radiologist.
Even though I'm a nurse, and even though I was with him every day and for every appointment... even though I was a knowledgeable and persistent advocate... I found the lack of follow-through and communication to be absolutely deplorable.
Now that I'm going through my own medical issues, I find myself starting every conversation with a new practitioner with a description of the problems we had with poor communication in my relative's case and an insistence that I know when to expect information from them and how to reach them if I don't hear by then.
I don't know how to fix this problem - it's so widespread in our medical system - but I know that first-hand experience with it had influence my practice as a nurse and my actions as a patient.