So I personally live in the united states, so I'm not speaking about other countries. Nor am I speaking about anyones else's experiences here. I have talked to many other patients in the community that have had the same struggles but that won't be quoted here, I am just sharing one perspective on a country-wide issue. I hope that those who read this and have their own thoughts share their message too! The more voices that are heard the quicker changes might be made. Last disclaimer- There are amazing doctors, nurses, and healthcare workers out there. Some that have saved my life! However, the bad ones have almost cost me my life.
The average person goes to the primary care doctor for yearly check-ups and if they get a common cold. At worst an er visit for a random injury or sickness. So when you try to explain the issues you have getting appointments and being blown off by doctors, they look at you a bit funny. Yet once you start having to see specialists and have multiple surgeries the appointments become monthly and many times weekly. We are at the doctors more than anywhere else in my case. Many with chronic illnesses are barely holding on, whether that be due to pain or literally their body is failing, but we NEED doctors to survive. So when there is waitlists months if not years long it makes holding onto life that much harder. Whether it be your mental health can't take it anymore or you have a physical issue that is harming you, we need help. We shouldn't have to plead and call every doctors office in the country to get help.
Before you get to the point of being waitlisted or even denied care you have to go through the processing. Which is understandable, they need your files and imaging. However, when each place needs all of the stuff and then their personal paperwork filled out it's a full time job. Most specialists require imaging and reports and then fill out their papers. The paperwork is normally between 10-20 pages long! I think we are advanced enough to create a way to sync portals or electronically share this. Some offices will but others will not. Try to think of this from the sick persons perspective. Thankfully, I have a mom that is trying her hardest and is basically my secretary. I would never have made it past the initial paperwork to see all my doctors. When having a migraine or after seizures it's impossible for me to read and write. I spend most days in a dark room with headphones on. It's taken me several different sessions to even write this. So not only have you been told an extremely long wait time you also have to spend hours faxing papers.
Then you often wait a week to hear back from the office to see if your case was even accepted. If the doctor accepts your case then you can schedule to get an evaluation appointment. The average wait time we have had is two weeks to two months out from the day they call to schedule. So now you are often times a month or more out from even meeting a doctor to discuss the issue. OK, now you have waited however long or maybe got lucky with a cancellation appointment. You get to the appointment and talk with a doctor and they order more labs and imaging. Now you wait to get those done before anything else can move forward. Maybe they'll get you in quickly for your work up but often again we get put on hold until the doctor has another opening.
So I believe you can imagine the frustration and pain that comes on during this process. I am back having issues with my cerebral spinal fluid. When this happens for me I start having seizures. I just had brain surgery in January, so we tried to go back to the neurosurgeon. I was told- "It's not my problem, see someone else". After being beyond upset by being totally dismissed by your surgeon, we now are having the problem that no other doctors want to take my case since my surgery was so recent. They tell me "go back to your neurosurgeon." Well I would if I could. I'm not saying my surgeon did anything wrong as goes the surgery part but follow up care for issues is kinda paramount. We are also having trouble getting the images from that hospital, and no office will even see my case without the latest images. So I am stuck suffering due to negligence and lack of effort.
I say lack of effort because, the radiology department said over a week ago the disk would be sent to us in the mail. I had surgery in Wisconsin but live in Maryland. My mom had called to confirm it was sent last week and was told it had been shipped. We call back, frustrated, a week later and the disk is still in the office.So not only have we been delayed in all other aspects of healthcare due to the wait, we have also been lied to. On another occasion we have been lied to, is an application to an office went missing. My lovely mother again spending hours doing paperwork recognized forms she already did. She did some digging and found the records from September of 2021. Our application was never sent through to the doctors! It sat in the receptionists email this whole time. When calling to address this of course no answers and minute apologies are given, even told us the lady who had the file no longer works there. But that is years of my life gone- we've traveled the country trying to find help and I could have seen doctors semi-local to us. And this is a well known facility! For legal purposes I am not disclosing names in this. Accidents do happen for sure, but how many people have had this very same thing happen. The most recent incident was that I needed a prescription refilled as the doctor upped my dosage. The pharmacy refused to fill the medication which was keeping my CSF pressure in check. On day 8 without medication, I was taken out of an appointment by ambulance as the seizures wouldn't subside. A pharmacy rejected a NEW prescription which caused me more medical issues. Why does a pharmacy have a right to withhold medication? Especially because my medication wasn't a narcotic of any sort. These are the sorts of things that need reform from a government stand point.
The game of hurry up and wait gets old VERY quickly. You are already suffering due to whatever medical reason and then you have the lack of empathy from medical professionals.I understand we are all human but this is their job! Receptionists are paid to take calls and file reports yet that never seems to be getting done. Doctors and surgeons are here to help people solve their issues not blow them off once they've received their money. Not to call patients crazy and blow them off. The average person begging for help isn't a hypochondriac or looking for attention. We want help! And just because you don't know the answer doesn't mean we are crazy. Dig deeper, send us to other specialists. Yet many times the patient has to fight for decent care and pray the doctors care enough to believe them.
The system we have isn't working. Patients are complaining but this system makes money, so big companies don't care to listen. Why do we live in a world with such greed and apathy? When did so many people stop caring?