Covering Your Butt

Dealing with health issues includes many frustrating situations.
You are attending appointments constantly, writing and submitting paperwork, claims forms, banking and financial information, managing prescriptions and physiotherapy exercises. You and your pharmacist are on a first name basis, the bulk of your memory is taken up by the names of medications, illnesses, allergies, as well as your health number, your usual blood pressure and temperature levels, and phone numbers for physicians, hospitals, emergency contacts, and someone who is always willing to check in on your pup when you get stuck in Emergency.
You have an entire section of your home dedicated to medications, sharps containers, and over-the-counter substitutes for those particularly dire weekends when you run out of medications.
You often have several different medical journals: your main one in which you try to write everything, your pain scale journal, your food journal, your sleep journal, perhaps specific journals for flareups of single illnesses, plus a trigger diary.
You also have apps on your phone: alarms for your medication times, alarms for your injections, and you keep your appointment schedule on a device AND on three separate areas physically written down.
You try to document every phone call, every conversation, and every meeting with any of your health professionals and insurance providers, but let's face it, some get missed. You'll receive a call to reschedule an appointment while you are at the pharmacy or in another appointment and forget to write it down once you got home. Or maybe you will write an email update and somehow forget to press the SEND button (it happens, believe me!).

In addition to all of that, you wind up juggling several different insurance providers if you are one of the unlucky few who are physically incapable of working. (There is nothing relaxing about being far too ill to be employed). We may find moments of relaxation - like anyone else - but our pain never goes away. Our pain and nausea and excessive fatigue never give us a break. So we juggle our own struggles with insurance companies that are meant to help, but who also lay the guilt on thick.

You can be as diligent as possible. You can do everything you are supposed to do. Things can still go wrong, no matter how forthcoming or how great of a patient or client you attempt to be.

Here is the worst part of it all.
Even though you write down every conversation and every appointment, even though you do as you are expected and go above and beyond what is asked of you, you are still required to do more - and if anyone else makes a mistake regarding your chart, it is still your fault and your responsibility to ensure the error is rectified.
As an aside example: when I was about to receive an infusion of a biologic several years ago, I politely mentioned that the veins in my hands roll, collapse, or just plain do not work. I mentioned that no IV had been successfully placed in my hands for approximately 8-10 years. The nurse that afternoon still tried to use my hand veins a couple of times - then proceeded to tell me that it was MY fault...That because I was nervous and did not sufficiently warm up my hands, that I had consciously made my veins impossible to work with. As an added slap in the face, she also told me that had we been in the U.S., I would have been forced to pay for the discarded needles.
I refrained from causing a scene (of course), but I did disagree with her and reminded her that I had informed her of my uncooperative veins and that she would have been paying for the needles in that hypothetical situation.

Or how about that time when a physician did not look at my chart, and prescribed several medications to which I was very allergic. Although the medications were administered while I was under anesthesia, it was insinuated that I had not properly informed him of those allergies and, therefore, he was not to be blamed. I had given them my personal list of allergies, wrote those down on my admission chart as well, had them clearly printed on that red hospital bracelet signifying allergies, AND it had all been previously in my chart from earlier appointments and surgeries. Yet, in that circumstance, it was still considered to be the error of the patient.

These are very very tiny examples.

There are only a few pet peeves that I have that irk me to my very core:
1. When someone else manages to spend my energy for me. Like, in the spoon theory - someone spending my spoons for me.
2. When I am held accountable for another's mistake - one which I did my best to rectify or even PREVENT.
3. When I am judged for no justifiable reason.
4. Losing privileges or access to vital resources or medical care based on the abuse of others. (Falls into a similar category of being punished for another's conscious decisions).
5. Knowing how many people abuse the system and who walk away unscathed, while those who follow the rules and protocol are scrutinized to the harshest degree ...

Being this ill is similar to a full-time job - except we never get a break or a holiday away from our illnesses. We are forever juggling numerous aspects of illness.
Part of that is covering your ass.
This means:
• Ensure you leave a paper trail of when you have done what has been asked of you.
• Record ALL telephone conversations - mostly when it involves health, coverage, money, insurance providers, government programs, and even going as far as recording instructions given by physicians.
• Include your medical information in several places.
• Always submit a FOIP form to access all of your records - this helps to prevent or rectify errors in your care.
• Memorize as much of your medical history as possible - very rarely is the entirety of one's chart actually read through in detail.
• Scrutinize every contract/document or anything you must sign in order to continue. Yes - read the dreadfully long Terms and Conditions. Tedious, but it may save your butt one day.
• Keep a close eye on all things financial. Be obsessive. Be cautious. Ask questions. Request clarification if you have ANY confusion.
• Go through your insurance coverage with a fine-tooth comb. KNOW what is covered and what is not, know what you deserve.
• Re-read contracts currently active every year to remain up-to-date on the policies and guidelines. It would be beneficial to go one step further and educate yourself on the legislation that governs these contracts.

I know - it's more work.
It is worth it, in the end, to have in your possession a clear cut record of how your medical situation is being handled. Then, in the event of a monumental error, it is less likely that you will be held accountable.
On the flip side of the coin, you can do all of the above and still learn that it was not sufficient to release yourself from accountability - even if the error was not your own.
After 17 years being a constant presence within the medical system, I am still learning hard lessons.

More than anything else, I think I get the most bothered when the guilt and responsibility is placed on me, the patient, who is often too ill to even leave the bedroom let alone record and jot down every single conversation with every single health professional. I do not like feeling guilty when I have done nothing wrong.

Such is life.
This will happen again, I'm sure, though unlikely in the extreme position I currently find myself.

My advice to any patient with chronic illness:

Treat every phone call, appointment, and email as though you will one day require proof that that conversation took place.
If you cannot reach the individual you are expected to speak with, keep calling. Day after day. Week after week. Leave voicemails (record each and every one of those as well), and ask to speak to an additional party if your phone calls/emails are not returned.

Medical care does not function as a regular business.
If a cashier at a grocery store accidentally forgets to charge a person for part of their purchase, they would not attack that customer a year later and claim that they have committed theft - especially if the consumer pointed out the error and was still ignored. If I go up to a cash register and the item I am purchasing is scanned in incorrectly (like scanning in only two items when there were three), who is held accountable? If I went up to the till and told that person I had three items before scanning, but then was informed after protesting that they were scanned correctly, then should I be flagging down a supervisor or manager? If I am told that the amount is correct and that I was mistaken (more than once), should I still be tracked down a year later to repay them for the third item?
If a waitress bills a table incorrectly, those customers are not tracked down months later.
Even if a BANK makes a massive transfer error to a completely different person, often that money cannot be retrieved. This is particularly true when the individual who benefitted from the error notified the institution and was informed that there was no error.
If you accidentally hand someone a hundred dollar bill when you meant to give them a twenty, told them to keep the change, and waved them off when they attempted to tell you about the mistake, would you treat them like thieves who were purposely, and knowingly, being deceptive?
If you accidentally ordered 200 items of a product online when you meant to order 20, was asked if the number was correct multiple times and was explained that it was a final sale, and had three steps to read before entering your financial information, is it the company's responsibility to rectify the error? If you approved the amount being charged after reviewing your order, would you call that company fraudulent once you finally noticed your mistake - weeks later when the product arrived?

Some of these issues have grey area, as do all situations, but some of this must seem logical.

Every single one of us has made mistakes, there is no doubt. I, however, believe that (in most situations), the person or company the most responsible for the error should be held accountable - especially when the client attempted to prevent or correct the error, was unaware of the error, and did even more than what was required or expected.

I am in a sticky situation.
My only mistakes in this singular event are as follows:
A. I was not recording each and every conversation a year ago.
B. I expected that the answers given by the individual I was speaking with were correct.
C. I assumed that the person managing my chart was the expert in these cases at that institution (compared to myself).
D. I failed to re-read a contract I thought I understood - one which I had signed 7 years prior to this error.
E. I failed to get all answers and conversations reviewed and returned in writing.
F. I put my trust in an institution to whom I am solely a file number and a dollar sign.
G. I did not call repeatedly day after day to make sure that I had been given the proper and correct information in two separate conversations.

    My biggest mistake was assuming that, when I asked if that person required additional information and was told 'no', that there really was no other information required. I held up that information willingly and did my due diligence, and was told that it was unnecessary. My mistake was believing it.
I guess it was my responsibility to fully question that person's authority, speak to the supervisor instead, and verify at every level that what my superior was telling me was accurate.

It is sad when you put your trust and faith into someone who you believed was there to offer assistance, and then are wrongly labeled deceptive.

So, patients involved in the world of chronic illness, cover your butt!