Falling through the cracks…

Some patients have always fallen through the cracks of our medical system, with unnecessary delays in diagnosis. We’re all human… a significant symptom can be ignored or misinterpreted, or we can put off investigating the cause of a nagging problem that could suggest a serious condition. But during the COVID pandemic, the cracks in the system have become wider. With fewer in-person appointments, cancelled screening clinics and hesitation to seek treatment because of worry about virus exposure, experts are warning that diseases are likely being diagnosed later when they’re harder to treat.

They worry that because early-detection procedures like PAP tests, mammograms and the PSA test for prostate cancer are being postponed, we may see cases where the diseases these tests screen for are more advanced at diagnosis. This can sometimes mean more expensive treatment and worse outcomes because diseases are more likely to have spread when diagnosed. Just like a house fire, cancers and infections are best treated sooner before they have a chance to advance and spread.

It will take time for statistics to show how much of this is happening and to what extent the problem of decreased health screening is affecting our health and our chances of surviving health problems that are detected further along in the course of the disease. But, anecdotally at least, I’m seeing that this is happening.

Of course, for privacy reasons, I don’t want to describe the cases I’ve learned about amongst family and friends, but I can tell you my story. You may have noticed that I took a break from blogging this summer… but it wasn’t because I was having too much fun to write. The truth is, I haven’t been feeling well for the past several weeks. And I still don't know the cause.

So, from my point of view, here are some of the "cracks" that it's easy to fall through...

Crack #1: one thing at a time

In mid-May I noticed some abdominal discomfort—nothing too terrible. Then a week later a sudden severe pain sent me to Emergency… Crack #1 to avoid: try not to have 2 things going on at once (not that we really have that choice…). If you do, be sure to explain that there seem to be two unrelated things going on. Turned out I had a kidney stone (perhaps obvious from the level of pain…) but since they couldn’t see the stone on a CT scan it was diagnosed as a kidney infection. I spent the next 2 weeks on an antibiotic that made no difference. A later scan showed several smaller stones, confirming what I had suspected must be the cause at the time because the pain was so severe.

But in spite of visits with 4 doctors and a nurse practitioner, along with a series of tests, there’s still something else going on that hasn’t been diagnosed yet. At least I’ve progressed from phone appointments to in-person ones as my symptoms have gradually worsened.

Crack#2: describe symptoms clearly

I can see that the system is backed up, with longer delays than usual in getting appointments and results of tests. Crack #2: make sure the person on the phone understands your symptoms and how severe they are. Avoid the “Fine, thank you” automatic response when a health professional asks how you’re feeling—be truthful and accurate. Let them know how the symptoms are affecting your daily life.

Crack #3: know your receptionist

One important lesson I’ve learned is that the receptionist is the gatekeeper of the doctor’s time. While it may seem weird to be describing details of an illness over the phone to someone who isn’t a health professional, she is the person who decides how soon you need to be seen. So, heed Crack #3 and treat the receptionist like the important person that they are… describe what’s going on politely and carefully along with any frustration or desperation that you may be experiencing! And thank them profusely for helping you to be seen in a timely manner—it’s probably due to their actions. Usually, they’re the ones who manage the doctor’s schedule and often are the ones with the connections to the receptionists in the specialists’ offices.

Crack #4: communicate well

Crack #4 is about lack of communication. If you go to an after-hours clinic or emergency department, your doctor may or may not know about it afterward. Even if the Nurse Practitioner in your Family Doctor’s office sees you and documents her observations on your chart, your doctor may not see it until your next visit with them. Your family doctor should be the central hub of your healthcare and seeing them regularly, especially when you have a health issue, helps keep your care from various sites coordinated. Make sure they are well informed and aware of any care you receive outside their office. At least now we have electronic health records in most areas, so information about various treatments in different locations is accessible to everyone who is treating you and needs it. They just need to know it’s there and to look.

Crack#5: avoid vacations!

And Crack #5 is: don’t get sick during vacation (as if we have a choice!). Many doctors are not able to find locums to cover the office when they take vacation, leaving patients to rely on after-hours clinics and emergency departments. Even our local blood collection/lab sample drop off clinic, usually lined up daily to overcapacity, just closed up for a week to take a holiday. For many like me, we were left wondering where to go and this resulted in yet another extra week's delay for me and many others in getting test results needed to help find a diagnosis.

My story...

So, where am I now? I just learned this week that my latest test, the one that should finally provide a diagnosis and the test I’ve waited 2 months to get, has a 2 to 3 month wait for results. I can’t believe it. I’m unbelievably frustrated that any lab could take 2 months to process a sample and that, as the receptionist told me, it could take an additional month in this age of electronic communication to send me a letter by snail mail with an appointment to hear the results. I think I cried on the phone in frustration. I’m hoping my newest favourite receptionist may be able to work some magic and expedite this process somewhat for me, the way the receptionist in my family doctor’s office was able to get me into the specialist more quickly. The words "possible carcinoma" on a June 30th test should have resulted in quick action but here I am, 2 months later, still waiting for a diagnosis. Whatever it is, I just want to know. It's more than a little stressful and certainly not the norm in any medical system, including ours. Might be time to send an email to my local politician...

The bottom line

I guess, the bottom line is that we all need to be proactive about our health. Even in these days of the continuing pandemic, we still should insist that routine care and screening tests are completed in a timely manner. Vaccines and well-fitting masks are tools we have to make sure we stay safe from the virus while we do this. If you have unusual unexplained symptoms, insist that they be diagnosed. Keep asking for investigations until the problem is resolved. Remember that your family doctor is usually the most important healthcare professional to work with you and to coordinate and oversee your care.

So, if you’ve missed any screening tests in the past year and a half, now is the time to book an appointment. Just like a house fire, it makes a big difference if you catch it early. If something seems to be wrong with your health, check it out right away and keep pushing until you get an answer… that’s what I’m doing, even though it seems to be taking much longer than it should.