Today started out like so many others, with a plethora of delays and a whole lot of question marks, but I finally made some headway with transportation so that I could schedule the Modified Barium Swallow test Dr. B. had finally updated. It has taken nearly an Act of Congress to get these few tests and the physical therapy evaluation in place and trips scheduled with transportation, and the wheelchair pressure mapping evaluation set up. I’m not happy that I am going to have to attend all these appointments in a chair that puts all this strain on my muscles. If he’d followed through when I’d asked him to in late November or December I might have already had the evaluation, had filled out the Independent Care Waiver form, sent it in, and the better chair could already by in the works. Knowing that getting these things through Medicare and Medicaid can take up to 6 months, this procrastination on my doctor’s part has only made life harder for me.

I tried calling Daria again and she was in a meeting. All the woman answering the phone could do was take a message and email her. At around 12:30 I still had no answer as to whether Dr. Baird had written the order for home healthcare, yet another day gone by that I was not receiving the help I need. Maybe he had called her today but I had no way to know and she couldn’t tell me, but chances are he still hasn’t given his recent track record.

Finally I received a call from a woman at the agency I’d called yesterday saying that Medicaid had approved me for services for the in-home help. I gave her my history and told her how much trouble I’ve been having getting what I need and that I am really drowning here trying to do all this when my GP now treats me as irrelevant and thus is under-reacting.

In tears I told her that I am a little nervous about trusting new people because of how things have been grossly mismanaged in every possible way this past year, and that I don’t want my dignity taken away by some “best-interesty” social worker and to be forced from my home and placed at the mercy of God-knows-whom, whatever this disease turns out to be. My home is really all I have, where I feel safe with my pets and familiar surroundings, my own bed, and my own type of foods, and that I would just die if people continued as many have been proceeding at Emory in taking away my freedom bit by bit. I see it happening before my eyes and it’s terrifying and it needs to stop. She said she understood.

Viewed from a sociological and humanistic perspective it is entirely understandable but often doctors live in the land of autocracy and it’s the patients who suffer because of their abuse of power. The Lord Giveth, and The Lord Taketh Away. This is really a matter of medical ethics. No doctor has the right to withhold treatment or other services just because he can. I don’t care how stressed or irritated they are, or how much they’re tired of their job. They do not have that exalted a status to wield that kind of power as a weapon. They may get way with it for a period of time, but sooner or later they will have to account.

I told the woman from the agency that I’m still waiting to hear back from Shepherd Center regarding a social worker and that I’d heard the ones they have over there are very good and would be less likely to do that sort of stuff to me. They deal with alot of people with spinal cord injuries, so they are more used to people staying in their homes and having the assistance there.

The next step is a nursing assessment through Medicaid through another agency called Faith Services. The woman on the phone today told me that when the nurse contacts me to tell her every need I have so that I can be given the maximum amount of time per week possible. I hope I can remember and verbalize everything at the time because I communicate better in writing than verbally and invariably leave a few things out when speaking, especially if the person rushes me and doesn’t wait for me to finish everything I need to convey. I will try to make a list and print it out just in case.

After noticing on several print-outs that my diagnosis of Myoclonus was missing I realized that this may also be adding to my credibility problem. Apparently it was charted as my diagnosis by Dr. T. in my record in her notes but in order for Emory to “officially” recognize it it needs to be entered into a particular list of all my diagnoses and it wasn’t. For Godsakes, I’m on Keppra for it (which works quite well), but it is not cured, just less severe and frequent than before! But in true Emory form this clerical oversight among other bungles has been used to the hilt to paint me as if I’m making it up or imagining what’s happening.

I swear to God, this record will be set straight, and my good name restored. I will not go down like this!

Dr. T’s nurse called back and read back to me some goblety gook a clerk had jotted down which said absolutely nothing. I guess she couldn’t spell Myoclonus, so just decided to say “the patient needed something changed in her record and for the nurse to call her”. I had to explain it all over again and the nurse got it right away the way I explained it. So hopefully soon that piece will be set right.

So if any doctors or other medical professionals are reading this; the lesson is think before you chart!

Things that do nothing to help your patient and may even hurt their care should not be charted, and things that should be and are not charted both can cause the patient to be misunderstood and these messages, omissions, even the lack of documentation in a patient’s chart can be and often are misconstrued by other doctors! This can cause a damaging slow-down or stoppage of care and can harm and in some instances even kill the patient because of the late intervention that results.

When I hear people say they’ve gone for 8 years being told their medical problem’s all in their head this is why! It has everything to do with spin and everything to do with bias! Those two things translate into actions (or lack therof). The writers and those who read what’s been written each bear some responsibility in what happens next.

While theoretically the electronic record can speed up diagnosis and treatment and improve continuity of care, there is a huge potential for abuse if not all professionals use it responsibly. As it currently stands, the patient who has been the victim of reckless and even malicious charting has little defense against a gaggle of medical “professionals” who see fit to sideline a given patient. I would be willing to bet this happens at a much higher rate to women than it does to men.

I would really like to see laws changed to require health systems to make all material in the chart visible to the patient, as well as printable, and would allow patients to respond to this material by entering their own entries without a board to decide whether or not they get to do this.

Since when did doctors become custodians of our bodies?

The old adage, “nothing about us without us”  is apropos here.