Dear Healthcare:
I drove 40 minutes for an iron infusion and got turned away at the door. A scheduler had changed my appointment time and never told me, no phone call and no note in my chart. That one quiet change canceled my next two infusions, and the soonest they could fit me back in was months away.
I have been working toward this treatment for six years, ever since a major surgery and a year of chemo left my iron and ferritin too low to recover on their own. I thought I was finally getting somewhere, and then it slipped away over a message nobody sent. So I gave up.
What looks like one skipped step on the clinic side turns into something much bigger on mine. Another long drive for nothing, more time off work I will not get back, and a deductible clock ticking toward the end of the year. If I cannot get in soon, that clock resets and I start over. Nobody in that building has to answer for any of it, no accountability at the costs of their mistake. And it does not stop there. It means making more phone calls, waiting on hold or a call back that may never happen, finding another provider, getting established, more testing, more delays. It means more days leaning on heavy amounts of caffeine just to function, which harms me in other ways, like financial toxicity. More stress juggling my energy, a full time job, doctor visits, travel, and supplements. And a little more distrust toward the healthcare system every time.
Here is the part I want providers and clinic teams to sit with. This happens to too many patients, too often, and most of the time it comes down to something small that could have been caught. A change confirmed with a quick call. A note dropped in the chart. A records transfer that actually goes through instead of landing back on the patient to sort out on their phone in a waiting room. I get texts, calls, emails and smoke signal reminders from all of my other providers, except she didn’t check that box when she changed the time of the appointment. The system failed and they move on to the next patient.
I know most of you who are working inside these limits did not create this system. I am not here to hand out blame, because this happens too often. I am here because the people who see these gaps up close are the ones most likely to know how to close them.
So I want to open this up as a real question. What would it take, on your side of the desk, to catch the small things before they turn into big ones for us? What has worked in your clinic? Where does the process keep breaking, and what would help you fix it?
I would rather build something better alongside you than keep pointing at what is broken. If you have found a way to make this smoother for your patients, I want to hear it, and so do the people reading this who are tired of falling through the same cracks.