I haven’t written much here lately about how things have been going as far as getting to Vanderbilt Autonomic Clinic, because I was under the impression that it was just a matter of time and having my current GP fill … Continue reading →
Ken McKim, the husband of a woman with Crohn’s disease likens fatigue to if a healthy person went around chronically sleep deprived (but at least in their case they can sleep extra and improve their situation), whereas with fatigue we can’t.
He proposes that healthy people do an experiment for one week in which they stay up all night except for 4 hours and the next day do all their normal activities, then when they go to bed set their alarm to go off every hour and stay up for 10 minutes each time they turn it off before going back to sleep.
He says that by the end of such an experiment one should have more empathy as to what those of us with fatigue go through. It occurred to me that this would be a good experiment for all medical students because even with all their cramming for exams they probably still don’t get the full effect of what it’s like to have a chronic illness.
I woke up this morning and took a shower, and felt alert just long enough to eat some breakfast, but as soon as that was over my energy drained away again. I again felt exhausted and have been finding it hard not to drift off to sleep without warning in the middle of swhatever I’m doing. I go from being exhausted but awake to suddenly finding that I’ve drifted off (only after I’ve done so and wake up).
Back when I was seeing the sleep medicine specialist at Emory I was supposed to have a daytime sleep study to rule out Narcolepsy but in order to do that you had to sleep 6 hours first and at the time I couldn’t do it because of the myoclonus keeping me from falling asleep and then once I did, people were tinkering with equipment in my room waking me up because of the noise and light coming in the door.
Nevertheless I can make a pretty educated guess that the fatigue caused by my chronic illness has alot to do with these sleep cycle abnormalities, particularly the central nervous system problems I have which affect the autonomic nervous system. In order for the brain to function correctly it first must have enough energy. The nighttime sleep studies I had did yield some important information in that my sleep/wake cycle is royally messed up showing Delta waves at the beginning (even before falling asleep) when they are only supposed to be showing up in the last sleep stage.
This was also documented in just about every EEG I’ve ever had since second grade when I was first brought to a neurologist because of near fainting spells. Some research has proposed that there may be a mitochondrial component to the severe fatigue suffered by people with chronic illnesses.
PubMed has numerous papers that have been published on the subject and in recent years there have been more and more scientists interested in this angle. The papers shown under the search Mitochondrial Component to Fatigue will bring up papers you can look through and print out those you feel pertinent to give to your doctor. It is not uncommon for doctors to try to dismiss research as being from “junk science journals” etc., but the papers linked in PubMed are considered fully legitimate professional medical journal articles from all over the world.
Don’t accept a doctor’s sweeping generalization that because studies were published in foreign journals outside the United States (or outside your country if you live elsewhere) that they are not legitimate sources. There are many fine and well designed and documented studies that come out of places like the Netherlands, Australia, and even Asian countries or India. You’d be surprised where some of the most cutting edge research comes from.
Also, don’t be afraid to write some of the investigators listed on these research teams. They often provide an email address in order to give the public an oppourtunity to communicate with them and ask questions. By doing so you just might find out about important studies that are accepting participants that would benefit people with your condition and these scientists might even have suggestions that your doctor can try to treat your condition more effectively right now!
If your doctor is offended by this and unwilling to discuss these new approaches with you, chances are you have the wrong doctor.
Remember that if you have severe fatigue you only have so much energy to work with in a day and a truly good doctor will understand this and respect and appreciate the fact that you put in the time to take an active role in your healthcare and bring him this written material. If he/she truly has your best interest at heart he/she will then genuinely look into these options for diagnosis and/or treatment and will take the legwork from there.
Way too often we as patients end up doing their jobs for them because of their stubborness and inflated ego, because they have too much false pride to admit when they need to consult professionals who know more than they do.
This is when the relationship becomes more about their needs than yours and if after trying to present them with this information they reject it out of hand more than a few times, it is likely that they ultimately won’t give you the care you need and deserve.
It should never be OK with a doctor to allow you to suffer any more than absolutely necessary and if there are still options left not to use them.
I had to learn that after I nearly wore myself out because I found myself working harder than my GP at Emory. At first when things weren’t getting completed and questions weren’t answered I thought maybe it just slipped his mind because of his patient load or the time got away from him, but I am very conscienscous about following up and at some point had to face the fact that my doctor was not the benevolent and altruistic person I thought he was and that chances are no amount of education was going to change that.
Any doctor that takes patient reports out of the equation might as well just turn in his medical license right now because he’s no longer acting in the patient’s best interest, he is treating his patient as an inanimate object.
For a chronically ill highly educated patient (which most of us become after so many years) it is imperative to have a doctor who bottom line accepts that this is the patients’ body and that with their being a competent adult over the age of 18 only the patient has the right to make the ultimate decision in treatment. A doctor can only advise based on his training. He cannot be inside your body to prove what your body is experiencing and how it affects you, nor how much suffering you can stand. Objective testing is only a tool and physicians have to realize that it can’t always detect everything beyond a shadow of a doubt. It has its limitations, and the clinical presentation is equally, if not more important in assessing what’s going on medically.
Prolonged fatigue is one of those symptoms that science does not have the knowledge to fully quantify, nevertheless it is very real and cannot be dismissed as psychological, or irrelevant information. To do so is very dangerous, because fatigue is a very good indicator that something is in fact seriously wrong in the body.
Healthy patients do not have this level of fatigue, and the distinction between fatigue and depression, for instance, is that patients with fatigue want to do things, they wish they could, but just don’t have the stamina. People who are depressed generally lose interest in hobbies and things they liked to do previously.
I can attest to this distinction, as I have interests that have continued throughout my illness and I remain enthusiastic and interested in them. It bothers me when I can only watch them in videos and not partcipate because of my level of illness. I am fatigued yet I’m anything but apathetic. I love life and look at each day as an adventure!
An example is this; I absolutely love snakes and have two Ball Pythons. Many of the people I’m involved with online surrounding this interest travel to reptile shows where they can pick out snakes and supplies and caging for them in-person and meet up. I would really love to do that, but seeing as there are only two a year a distance away outside Atlanta, (in Cobb County) I have problems getting there with handicap transportation, and it tacks at least 2 more hours onto my day including a transfer to another county service if I were to book the trip. (Not to mention it costs double fare).
Then if I were to stay a decent number of hours to be able to see everything, I would be sicker by the time I returned home. If I went in somebody’s car I could leave when I became too exhausted, but on public transit you can’t do that. (A time is prearranged to return and if you need to leave earlier they will not accommodate you no matter how ill you are).
I would love to go to the big reptile show at Tinley Park (in Illinois) but not only am I not able to afford the travel and hotel for several days, the travel itself would be too taxing for me right now.
Another example; I really love art and have been trying to come up with other forms of art I can make that don’t require so much fine motor dexterity and although I’ve found some that are easier for my hands when I actually began doing these projects I found them to be incredibly exhausting and take me much longer than they should. I actually sweat with the effort it requires, and either really pay for it in the several days that follow or have to stop before I get it done. This is very frustrating because my motivation is still there but I can’t complete the task or at the times I do I do it with great negative consequences.
My best guess in treating fatigue would be to use compounds that directly address a mitochondrial disconnect, so if any of you reading this find new developments in this area of science please feel free to post them here in the comments, as it might really help others suffering with the same barriers. Please post sources if you can.
Somehow the patient community must get these ideas across to doctors in clinical practice so that rather than disengaging from us when our illness is prolonged they look at it as something worth working on. Even if a cure is not close by, there can be a sense of accomplishment for both patient and doctor by adopting an investigative approach and trying things even if just based on theory.
Sooner or later improvement will likely happen with that type of perseverence. That is better than doing nothing, regarding the patient as hopeless and a “treatment failure”, and just tuning them out. That should never be the response to a complicated case. Just like pain, the continuing fatigue a patient experiences is a signal from the body that the doctor’s job is not complete.
I missed a week of blogging due to the difficulty I’ve been having with my Dysautonomia and my ASD (Aspergers) and the effects of the trauma from what has happened at Emory. I’ve experienced several full-on meltdowns due to all the stress and the barriers I’m encountering in trying to get my healthcare back on track.
I’ve been having fitful sleep interrupted by nightmares which are clearly due to the bullying I’ve suffered. The theme is always some sort of sabotage. In the nightmares I’m trying to achieve some goal and somebody comes along and destroys whatever I’m doing and I end up in some sort of danger as a result.
In one such bad dream I had lit a match in order to relight the pilot light on a stove and someone came up behind me and knocked the match out of my hand.
Closeup of a business man with his hands behind his back and fingers crossed. Torso and hands only, man is unrecognizable.
It fell from my hand and behind a dresser. I tried pushing the dresser aside but it was too heavy. Meanwhile the room quickly burst into flames as the fire spread from the carpet to the drapes and soon everything was engulfed. I then found that I couldn’t move to escape it no matter what I did. Just as I was about to be burned alive I woke up in a panic. It took quite awhile before I could fully come out of it and realize it wasn’t really happening.
In another dream I was getting ready to mail a very important letter and I was in some sort of cabin in the wilderness that was at the edge of a steep canyon. In order to mail the letter I had to climb down somehow on the edge. There was a crack in the wall handmade from plywood overlooking the drop below and the letter got stuck in that crevice. I tried to pull it out and was relieved when I could do it, but as soon as I did, along came somebody from behind me who swiftly pulled it from my grasp and shoved it through the crack in the wooden wall. The letter fell and was gone hundreds of feet below, never to be retrieved again.
Alot of times the sabouteur comes from behind me and I don’t see their face. I can’t tell if it’s a man or a woman because they never say anything and I wake up before I can turn around and look.
In addition to the element of danger in these dreams there is alot of uncertainty.
All this got me thinking about just how crucial it is to build a plan for safety. People with Autism and other hidden or misunderstood conditions are especially vulnerable to abuse and neglect in a number of settings; for instance, police officers often mistake people with epilepsy for being publicly intoxicated,
and many people with such conditions as Autism, Dystonia, and Dysautonomia as well as other poorly publicised conditions are mistreated in healthcare settings just as I was.
This is something that is not spoken about nearly enough in the news or in other public forums but doing so may very well save lives.
Here are some things you can do to help prevent falling victim to those who might abuse, neglect, or exploit you thinking you’re an easy target because you’re in a wheelchair, you’re frail, have communication or cognitive difficulties, or have other disadvantages which may leave you in a compromising position.
1) Wear a medical alert bracelet;
Try to get as much pertinent information on it as possible that people would need to know in an emergency and/or if you are misinterpreted in the workplace, school, by medical personnel, or law enforcement, or in any other public place.
If you can, list a contact person you know who is willing to be contacted and can advocate for you to explain your needs. Nowadays there are many types of bracelets on the market that you can buy. Some of them are even nice looking! See some medical alert bracelets on Etsy .
2) Carry a medical alert card at all times;
You may be able to fit even more information on the card than you can the bracelet but you should try to have both since somebody may not think yo look in your wallet if you are unable to tell them to do so. This organization came up with some Autism Alert Cards you can customize. This company located in the UK sells bracelets that include cards with them.
3) Carry an official diagnosis document at all times;
this can be any official letter you have which proves your diagnosis (if you have this documentation). If not, you should speak with someone about obtaining one. This can be a testing report, a letter from a doctor or therapist written to whom it may concern, or if neither are available, something from your medical record with your official diagnosis on it.
Ideally you should have something not only listing your diagnosis but specifying what your limitations and special needs are, any medications or treatments which need to be given, etc. If you have a supportive doctor or other medical professional, his/her name and contact number should be on this paperwork if at all possible.
4) Bring a buddy with you to the hospital;
If you have some advance notice that you’re going to the ER or checking into the hospital on direct-admission try to arrange for somebody to come with you.
It should be someone whom you have spoken with in advance about your needs and limitations; preferably somebody assertive who will not have a problem speaking up to authority figures in your defense while still remaining calm and rational.
This person can keep an eye out for you and can also act as a witness in case anything goes wrong. If they have a cellphone they can also videotape if somebody is mistreating you.
If you don’t have anyone in your life to fulfill that role be sure to contact one or two people before leaving and let them know which hospital you’re going to (and if possible give them the phone number so they can call and check on you). Bring your laptop or some other mobile device that has internet access. That way you can give them updates.
One of the things I learned as a patient advocate years ago is that people who have someone actively checking on them are less likely to be abused or neglected because it’s more difficult for perpetrators to get away with it and the likelihood is that they’ll get caught. This is often enough of a deterrant and they won’t even attempt it. (I’m pretty sure that if I had had somebody willing to go with me or meet me at the hospital in December that my incident wouldn’t have ever happened).
Taking these steps can’t guarantee you will never be victimized but they can make it much less likely.
If you do find yourself in a situation in which you’re abused, neglected, or exploited, be sure to document as much as you can about exactly what happened. Take down names, times, dates, what they did that they shouldn’t have, and/or what they didn’t do that they should have, etc.
Then I would recommend contacting The Dept. of Health and Human Services and filing an Office of Civil Rights Complaint.
Filing with State regulatory agencies in my experience is often a complete waste of time, as usually doctors are automatically believed carte blanche by such decision-making bodies and therefore it is not a level playing field. Usually such investigations consist of review of the records to see if anything “not meeting the standard of care” is documented (and of course doctors aren’t going to rat on themselves or each other in a patient’s record), they write up the perpetrator’s side of the story, and send it to the patient.
In some of the more progressive states filing a complaint with the state medical licensing board might yield results if the malfeasance was committed by a doctor, but often doctors are reluctant to discipline their peers (the medical boards utilize doctors to investigate the claims and determine the outcome, if any). Generally they have the option of making any action taken either public or private. If they take private action they might keep that secret and not even let you know they are doing anything about it at all.
How You Can Help Now;
You can also send letters now to HHS asking that they make Institutional Bullying of medical patients/people with disabilities an added Civil Rights violation in the same way it’s interpreted in statutes for Institutional Racism. Please also ask that clear-cut consequences be specified in any new legislation and/or amendments.
Given that this is an election year this is the perfect time for you to send your letters! The more of us who write and make our voices heard the sooner we can make this type of abuse a thing of the past and prevent others from having to endure these atrocities in the future.
HHS HeadQuarters
US Dept. of Health & Human Services
Attn: Secretary Sylvia Burwell
200 Independence Ave., S.W.
Washington, D.C 20201
Phone (Toll Free); 1 (877) 696-6775
Go here to file your official grievance if you have been discriminated against because of your condition and/or not given reasonable accommodations for your special needs. You can file by snail mail, email, fax, or via their online webform. (All communication options and requirements are explained on their website on the paged linked-to above).
Although this is covered under current law there are still many people who unfairly make allowances for it when this happens to people who are ill and/or disabled in a way they would not with other minority groups. There should be a zero tolerance policy for this type of discrimination and a recognition by all that this is every bit as heinous (in many instances even more so because this population is at a greater disadvantage than most other minority groups)
If a doctor forced you to decide whether to keep your arm or your leg which would you choose? This is a ridiculous scenario, but figuritively speaking, chronically ill patients are expected to do that on a regular basis, sacrificing one thing they need in order to have another they need just as much.
I found this out first-hand when I began receiving services through SOURCE, a Medicaid waiver program that provides personal assistant services to people with disabilities who need help at home. When I first began with them I was told that I had to utilize a primary care doctor off a list they provided but that I could also keep any other doctors I wanted to keep.
The primary care doctor I had chosen when Emory sent me the certified letter kicking me out was somebody affiliated with Piedmont Hospital and although I wasn’t sure whether she was going to be able to help me get the necessary referrals to out of town specialists a staff person from her office called last week to say that she was in fact working on a referral to Vanderbilt and just to give her some time to get it facilitated.
She was unable (because Piedmont doesn’t accept direct Medicaid payment) and unwilling (because she didn’t want to be inundated with Medicaid Patient referrals) to sign up to get on the SOURCE list but I had been told by the SOURCE caseworker that I could have one doctor through their list and also keep her if I chose.
Today I went to the appointment with the SOURCE doctor I’d picked out (whom I will call Dr. HA). Dr. HA had wavy brown shoulder-length hair and was a little taller than I was; maybe about 5 ft 4 or 5.5 and of medium build.
She seemed nice but I could see fairly quickly that there were going to be numerous problems.
First, she wanted the records from Emory. This was a non-starter right off the bat and it seemed there was no way to make it out of this minefield unscathed. She told me that she had privileges at Emory Midtown (where Dr. H, my Pulmonologist works) as well as at Piedmont, and (strike 2) that “Emory’s good.” Uhhhh…Not so much, I thought.
I told her I’d been going there for 13 years and that it used to be but this past year something has changed, but she wouldn’t leave it at that. This turned into a game of 20 questions. She wanted to know what the political stuff was and on, and on. I reluctantly told her that there are numerous inaccuracies in my medical record and that two very important consults out of town had been sabotaged at the last minute, so I was not comfortable signing a blanket release for that medical record to any doctor, but that I would give her the objective information from test results, vital signs, etc.
“I won’t judge” she said Dr. HA in her thick Russian accent. “I can just go in and pull it since I am affilliated with them.” She then said she would also like the information on my chronically elevated liver enzymes.
“No, the clinical notes are awful. I’d rather you not. I would rather just close the book on it and not re-open any of that. I don’t want this stuff passed on from doctor to doctor.”
“If you don’t want me to look I won’t look” continued Dr. HA.
I’d heard this song and dance before and no longer trusted it. Signing such a release would have given her the legal right to access the electronic record as a whole and it was too big a risk. “I can give you the objective stuff. I have some of it with me and the data on my liver enzymes I can get for you if you need those”, I responded.
This doctor utilizes students from the Carribean and often 3 or 4 heads are better than one, and could ultimately be helpful but these were not residents but medical students so they were not as far along in their training as I’d originally thought. They all looked of West Indian descent with dark straight hair and dark skin.
One woman typed my medical history while another checked my vital signs and… checked my reflexes (ick). This more irritated me than scared me this time. I resisted the urge to throw that hammer across the room, LOL. As usual I had spasticity/hyperreflexia in my legs. She did not check the reflexes in my arms; just strength.
When it came up as to whether I wanted her to be my primary care doctor I explained that yes, for Source, and that Dr. P was already working on referring me to Vanderbilt and that I didn’t want to further delay that. This was a sticking point with her and she also seemed overwhelmed with the referrals I needed. She asked why Emory couldn’t just have me seen in their Movement Disorder clinic at which point I had to further explain that the Chief Medical Officer had kicked me out and then she wanted to know why, yada, yada…and I said that besides, I had never been referred there even before all that happened and that that was a big part of my problem; that the proper referrals to specialty clinics had not been acted upon when they should have been and with all the politicization of my case it would not really be in my best interest to go to their Movement Disorder clinic now even if I had not been barred from going as it is doubtful that I would get a fair and unbiased evaluation.
I went on to explain that I have rescheduled the one at UF Movement Disorder Clinic for January but that I need a doctor to sign off on the necessary forms for my oxygen concentrator to be carried on the plane and the one for the non-profit to cover my travel expenses.
“Really you need to have a neurologist to do all those things” said Dr. HA. “I feel it would be better for me to have back-up in case there ever was a neurological problem I don’t know how to handle.”
“I had two; one in Sleep Medicine who treated my Myoclonus and one in General Neurology” (giving her their names), “but Administration came in and forbid them to keep seeing me. I trusted them because they were going to support me through this process, but I had a really bad experience with a male neurologist and after that I don’t know if I can go to another one here in Atlanta. I looked and there was nobody of the ones available that I was that impressed with, besides, that male neurologist in the Emergency room was out-and-out abusive. I just really am hesitant after that.”
“Did you report it?” she asked?
“Yes.”
“Well I know one at Piedmont who’s good…Dr. _____” (I will call this one Dr. HAA to avoid a mix-up as there are lots of these doctors who’s names start with H), I’d heard of him and can’t remember what his reviews said, but still…he’s a male neurologist. The thought of going through this embarrassing explanation as to what happened at Emory with yet one more Atlanta doctor, much less a male neurologist, was more than I could stand.
The primary care doctor, Dr. HA had me describe my Myoclonus, then looked up something on her phone. “Tramadol could lower your seizure threshold”, she said glancing over at me.
“I know, but the neurologists I was seeing didn’t think my Myoclonus was seizure-related, they thought it was due to the underlying disease-process, so I don’t think that is an issue. Besides, I’d already tested going off it for a few weeks and it made no difference in my Myoclonus at all. It’s much better on the 1000 Mgs of Keppra than it used to be before I was on it. I used to be up all night with it until 7 AM.”
The two students stared ahead making slightly uncomfortable faces at her apparent lack of clinical knowledge regarding the several different etiologies of Myoclonus. I noted it as well.
“Dr. P is in the process of setting up the referral to Vanderbilt. I’ve waited 7 months for treatment already and I really don’t want to delay it any longer. The neurologist may or may not even do that.”
“Let me speak with your caseworker” replied Dr. HA. “I don’t know why she told you to keep both of us. That doesn’t sound quite right for me to be for Source and she wouldn’t sign up but she will get paid to see you too when I went through the paperwork to get on their list.”
I handed her the caseworker’s business card and she dialed the number. “Ms. N? This is Dr. HA”, she introduced herself. “Yes, I’m here with Ms. Carlington in the office. She has told me that she was told she could see a doctor through SOURCE and also this one that she’s already established with who is not with SOURCE. I don’t think that’s right that she sees her and also me. Why did you tell her that? I don’t really appreciate it.”
Both me and the two female students in the room looked at one another awkwardly.
She put the caseworker on speaker. “I just figured she could do everything dealing with the neurological referrals” said the caseworker, “since she was already working on the referral. We really just need a doctor on record and since she was unable to get on the list I told the client to just pick one on the list for our purposes in addition.” And then speaking to me “Ms. Carlington, I guess you’ll just have to take this one on faith so that you don’t lose the home help. I don’t know what else to tell you if she won’t do it along with Dr. P.”
My heart sank “I’m beginning to think this is becoming more trouble than it’s worth. She wants me to see a new neurologist for the referral rather than her to do it if I switch to her. I don’t know any neurologist I trust and who knows if the new one would even give the referral. This could go on forever and I might never get to Vanderbilt at this rate.”I told her I just didn’t know what to do at this point, as I have had to change way too many doctors in a short period of time.
Dr. HA thanked her for speaking with her. I started to ask the caseworker if she’d be in the office when I got home so I could call her later, but she’d already gotten off the phone.
Dr. HA wrote me a refill of my Tradadol (but just 1 month’s worth) and told me that she’d give me a month to decide what I wanted to do, that she wouldn’t bother making copies of my records I’d brought with me until she knew I was coming back, then I followed her and the students back out into the hallway.
I need the referral to Vanderbilt but I also need the personal assistant. It’s not an either or situation. I need both equally. This is a real double-bind, but it seems if I get rid of Dr. P she won’t be too thrilled after she’s gone to the trouble of working on the referral to Vanderbilt, and she’s a sure thing and will save me time if she does it.
This newer primary care doctor is a question mark at best, and whether a new neurologist she recommends will follow through with the referral (if I can even get up the guts to see a local neurologist) is a total crapshoot since she doesn’t want to do it herself. It also makes me uneasy that she’s invloved with Emory on any level. Somehow in all these people’s self-interest I, the patient got left behind.
So many don’t understand the magnitude of my loss. I had two good female neurologists and they were ripped away from me when I needed them most. This is killing me. I need time to grieve. All this not being seen or heard and being required to fit into other people’s boxes I don’t fit just makes my heart ache and all I want to do is withdraw from everyone. Step out on faith? I can’t; not again for the umpteenth time. I need to eat what I like, keep to my routines, pace myself and not make too many changes too quickly. For me that’s a necessity; not a luxury.
Good charting is a skill that can be learned, but when the basic ethical principles involved are not adhered to it can actually do patients more harmed than good. As they say “The pen is mightier than the sword” and that is so true!
Charting on a patient carries power, but with that comes responsibility to carry out this activity with grace and selflessness, never forgetting that you are commenting on aspects of that person’s life and this very act can influence how the patient is treated by others who read it. One must resist the urge to “think out loud” in a patient’s medical record where such conjecture might not be in the patient’s best interest and thus hinder their care.
Doctors, if you are using a patient’s medical record to further your personal agenda or hypothesis in conflict with the patient (or with another doctor indirectly) you are not benefitting your patient, so please stop it.
The medical record is not your personal journal, it is not the place to grandstand, to take shots at the patient, to show your ego, nor is it the place to take out your frustrations from home.
Given the fact that you assume the patient will not likely read what you’ve written it might be tempting to fill the chart with your own bullish rehetoric, but this says more about you than it does about the patient and therefore it does not belong there.
When I worked officially as a patient advocate under the federal Protection and Advocacy system devised in 1986 by legislation enacted by Congress I attended extensive training sessions on various aspects of the job and I learned alot about what a proper chart is supposed to look like.
We used to have an independent contractor evaluate all advocates’ charts on patients nationwide, and my charting was actually deemed the best in the country of all Protection and Advocacy systems.
There are certain principles that exemplify skillful charting on a patient.
1) Charting must be accurate and precise
2) It must be relevant
3) It must be written to benefit the patient
Accuracy and Precision
This is pretty self-explanatory but there is often confusion as to how to interpret what is “accurate” and what is “precise.”
Let me start by saying that you are only resonsible for charting what you know to be a fact. This does not mean that what you don’t know is not a fact; one to be disputed in the chart. For example; upon receiving my doctors’ notes last week, I discovered that my pulmonologist had written some things attempting to question my diagnosis of Sarcoidosis. Why he would do this when Emory has already confirmed the diagnosis seems suspect in and of itself and smacks of personal agenda.
My diagnosis was obtained by objective tests 13 years ago.
I had a Gallium scan and other test results such as labs which showed idiosycratic markers for the disease. That is a fact.
There is no disputing that, yet the doctor did. It is true that a follow-up gallium scan this year indicated it was probably not actively in flair now, but that does not invalidate the diagnosis itself. It only means it’s not in flair at this point in time and indicates that my current symptoms are coming from something else. It has not magically disappeared as it’s a chronic and incurable disease. It’s possible that this pulmonologist may be using outdated understanding of the disease (long ago it was believed to spontaneously “go away”), but this has been disproven with the advent of more understanding of the physiological workings of the disease.
Sarcoidisis was once thought only to be a lung disease (hence why it’s often treated by Pulmonologists), but now it is known to be a multi-system disease that can and does affect every part of the human body. It was once thought to be only characteristed by non-caseating granulomas, but has since been shown to be much more complex than that and its inflammation manifests in many more ways than once believed.
It is now undrstood by the top experts in the field to be associated and most likely caused by intracellular pathogens. It is not merely an autoimmune response after an offending pathogen has been cleared from the body, but instead the resulting inflammation is a response of the body detecting a pathogen it just can’t locate and effectively kill.
My Pulmonologist, Dr. H perpetuated further inaccuracies when he charted that my Dysautonomia was “self-diagnosed” and and in his insistance on continuing this assertion in the medical record pretty much accused me of lying given the fact that I’ve told him that this came from a doctor who treated me with IV Saline at Piedmont hospital; not from me.
It is a fact that I knew nothing about Saline as a treatment modality for Dysautonomia before the doctor ar Piedmont did a blinded experiment (unknown to me at the time) by putting me on Saline infusion, then taking me off for 24 hours or so to see what happened symptom-wise.
The doctor who tried this did not explain any of this until after he trialed this method on me. This prevents any bias I could have had and thus rules out placebo effect. The factthat I responded positively when treatment was given and negatively when it was withdrawn indicates that reduced blood volume is a factor in my Dysautonomia.
Dr. H glossed over this in his charting, disregarding what I’d told him. He made no attempt and showed no interest in verifying what I had told him, merely assuming it wasn’t true. Why? The answer to that lies in an area of his mind only Dr. H can answer, but one thing is clear; that the subtext in his charting conveys that he does not believe me.
How does this serve the patient? Answer: it doesn’t. It only serves to undermine the patient. He went on to state in the record that I was “suspicious” and “defensive at having my opinion challenged.” Hmmm. Sounds like projection.
During our last appointment he got very huffy and puffy that I wouldn’t just accept as fact his theory that my problem was psychiatric in nature and wanted to end the appointment because I wasn’t buying it. He said ” Do you really think Neurlogy is helping you?” Then was very offended when I told him I wanted to give Dr. V a chance, and his statement was “OK, I’ll take a back seat to Neurology” as he rolled his eyes and heaved a huge sigh with matching dramatic shoulders shrugged up, then down.
His charting reflects that he was agreeing to that course of action, yet he contradicts that with a lengthy monologue which tries a bit too hard to invalidate my seeking expert assessment out of state (which Neurology supports my obtaining).
He says that going for these assessments is “premature” yet he suggests I go to a psychiatrist” (which should be the last resort after everything else is ruled out, and it hasn’t been). There are alot more tests that have not yet been performed before throwing me in that dustbin. For all his talk about lack of “proof” and “evidence” he has not one shred of proof that this condition is in any way psychological. Besides, psychiatrists are generally in the business of prescribing medication (indicating a physiological cause for which medication is assumed to have a beneficial effect on a patient).
So which is it, Dr. H? Let’s stick to the facts.Let’s be accurate and precise rather than subjective and vague.
1) I have dysregulated blood pressure,
2) chronic constipation,
3) near syncopal episodes,
4) Muscle weakness and spasticity, and severe fatigue
5) Etreme thirst and need ice water by the bed at all times
6) GI upset; nausea, lower GI spasticity, inability to eat solid food for weeks at a time
7) I’ve been hospitalized and treated for such problems, and said treatment improved the symptoms without my knowledge of Dysautonomia at the time (I did not read up on it until after it worked).
8) Dysregulated sleep/wake cycle (evidenced by 3 sleep studies that he ordered and interpreted)
9) I have Central Apnea and Biot’s Respiration; both indicative of a “central process”. Patients don’t develop these for no reason. Idiopathic does not equal psychological or psychiatric. It just means the cause has not been found yet and it requires further investigation.
Relevance
All the wild speculation about my condition possibly being in my head is a distraction from the task at hand and has derailed any unbiased investigation. Dr. H went way off-course with only the lack of an explanation for all my symptoms as his reasoning for wanting to send me to a psychiatrist. I don’t see how this is at all relevant, and seeing as he figured I wouldn’t see what he’d written, the intent could only be as a coded alert to other doctors who might be looking at my records to view me as less than credible. None of my sleep problems were addressed in that last appointment with him although I’d told him that the sleep attacks had returned. He was only interested in invalidating me along with all my symptoms and even my established diagnoses, as though in one fell swoop he’d completely come to revile my very core essence and viewed me as suddenly unworthy of even the most basic dignity afforded to patients because they are human beings who deserve compassion and empathy.
It was this “othering” that is unmistakably present in the room, that visceral feeling that makes the hair on the back of your neck stand up when you encounter it.
Written To Benefit The Patient
Charting on a patient must be written with the intent to do something useful for the patient.
What do you intend to accomplish?
What is your game plan?
How are you going to go about helping the patient?
These interventions should be developed in partnership with the patient, as the patient is the one who must be happy or at least content with their healthcare outcome since the patient is the one who must live inside their own body.
You, the doctor can go home and forget about the patients’ pain, fatigue, GI symptoms, movement symptoms, syncope, or other medical problems. The patient, however does not have that luxury.
Dr. H. stated in my record that he was going to go along with Neurology, but Neurology (Dr. V. to be specific) had changed course and was now on my side and no longer doubting that I have Dysautonomia. Dr. V had a very succinct plan which partnered with me to obtain the full assessment for my Dysautonomia, laid out in bullet points.
She did put the Aspergers assessment on my chart as a goal (which although I asked her at the time to keep this off the record she did not), but be that as it may, this was neuropsych; not psych as Dr. H was so blithely wanting to push.
Did he read her notes? I wonder. Perhaps he assumed that she would go in the direction he was heading and when she didn’t he lashed out using his charting as a weapon to defend his wounded ego.
Since I believe they can edit records later I have no way of knowing when Dr. H entered the voluminous material pushing the psych agenda. It may have been soon after I left his office or it may have been later once he’d seen that Dr. V. was not thinking that my problem was in my head.
Dr. V. commented on June 3rd at my last appointment that she had noticed my blood pressure had been running low. Although she did not know the underlying cause of the Dysautonomia she did not dispute it in any way, and was welcoming my going to these consults out of town, admitting that Emory does not have the facilities nor expertise to do full autonomic testing here.
Unlike Dr. H., her notes this time were constructive, laying out a plan that I was in agreement with, a list of numbered goals, (and sticking to the overall goal which was to find the underlying cause of my Dysautonomia and ultimately treating it). That is more like it.
To this day I believe that Dr. V. in her heart is sorry for how she misjudged me on our first meeting and truly wanted to make up for the scathing rush-to-judgement that is forever branded on my medical record.
I don’t know why she did not edit it when she returned from maternity leave, but maybe the reason was to show that sometimes doctors can be wrong and that they can also admit that they were wrong and can change later. It takes a bigger man or woman to admit when you made a bad judgment call and correct it than to stick to your story even once you realize your first impression was incorrect.
It did hurt to know that what she’d written the first time was the straw that broke the camel’s back and resulted in both my GP and Pulmonologist’s diverging from me and the impetus for the dissolution of those doctor/patient relationships, but she is not solely responsible. They have a part in it too, and it’s disturbing that either of them would so quickly dash my credibility on the rocks because of some other doctor’s opinion who had just met me. Those two had known me as a credible person; one for about 1 year, and the other for 13 years.
They should have known not to be swayed from my side based on some opinion espoused by a doctor that had no chance to know me as they had and had only a limited snapshot of the circumstances under which I came to the clinic.
In the final analysis Emory’s Administration didn’t allow things to work themselves out and to set the record straight once more data could be obtained. They were too invested in making sure it never would be worked out, too invested in keeping the record toxic and defamatory so that I could not obtain care in or out of Emory.
In their fervor to interfere between doctor and patient we may never know if all this might have ultimately been put in the past and whether the relationships that still existed would have become stronger once more facts were elicidated upon further testing.
Perhaps this could have been a model, a learning experience for other doctors to see how things can evolve over time and how things can be put back together after such a fire-storm of controversy sets the record on fire.
Maybe behind the scenes Administration thought such a mess had been made by their various employees that it was irreparable, but the most unfortunate thing of all was that by the time they started blocking people from working with me things had died down considerably, those who had openly turned against me were gone, and when Dr. V. returned it looked as though things might have a happy ending afterall.
Just as my care made a constructive turn, I encountered a brick wall; the corporation added insult to injury, swooped in, and never allowed the answers to play out.
Instead of becoming a teachable moment for other physicians watching it this case became a prime example ofhow not to do conflict resolution when you discover that agents of your company have engaged in unethical charting on a patient.
Aspergers and other forms of Autism were once thought to disappear once a child reached adulthood, but now experts are discovering that’s not so. Many people reaching the age of majority who were diagnosed as children who may have had services while growing up and an increasing number of undiagnosed Autistics have now “aged out” of the social service system and find themselves at a loss as to how to fully function in society.
While Autism exists on a spectrum with each individual presenting differently in both strengths and defecits, there are certain traits that people with this condition generally have in common;
* Difficulty in reading social cues from others in their environment.
* Difficulty in communicating their thoughts, feelings, and intentions to others in a form others can understand.
* Trouble in processing and making sense of the world around them.
* To some degree feeling uncomfortable making eye contact.
* May have sensory issues, and some don’t like being touched, certain tastes, textures, sounds, and/or smells.
* Literal thinking and impairment in one’s ability to decipher sarcasm, lying, disingenuousness, deception, trickery, two-faced behavior, and in some instances out-and-out meanness.
* Tend to take people at face value.
* A strong moral sense of honesty, right and wrong, and justice.
* May come across as odd or accentric.
* May have trouble regulating emotions (either appears emotionless as in showing lack of affect in voice or facial expression, and/or the opposite may present itself in that the person may get very upset at times).
* May have inflexibility in changing one’s routine.
*May have very specific and sometimes narrow interests that are focused on very intently, and difficulty “switching gears” to transition from doing those activities to doing other activities.
* May speak long-windedly and circuitously especially about those topics that interest him/her, often unaware of when others lose interest.
* Difficulty conceptualizing opinions widely divergent from their own (once believed to be a lack of empathy, but now recognized as difficulty with a particular type of abstract thinking).
*Repetitive behaviors; known as “stimming”(some of which have the function of self-soothing).
*Co-morbid conditions can include ADD/ADHD, Anxiety and/or Depression (usually situational), sometimes Obsessive-Compulsive Disorder, and more recently a variety of medical conditions are recognized as being associated with Autism such as GI conditions, Dysautonomia, allergies, Multiple Chemical Sensitivity, Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and other Autoimmune Diseases.
*Often these individuals are vulnerable to bullying by not-so-nice people who pick up on the fact that something is different about them and take advantage of their “blind spots.” This does not only happen to children in school settings, but can happen to adults also in the workplace, the community at large, and even in healthcare settings.
There are a growing number of cases documented of abuse and/or neglect in ERs and in other hospital settings. Staff often lack the training and patience necessary to accommodate such populations and therefore handle the situation very badly.
(Note that these symptoms in people with Autism often become worse when they are hungry, thirsty, or have medical issues that are not addressed in a timely manner. This is why it is especially important to pay attention to these clues and take them seriously. They are not a sign of mental illness nor of the individulal just being “difficult” nor are they a defect of character, but indicate that something is legitimately wrong that needs addressed ASAP).
It was once believed by experts that boys were affected at a 4:1 ratio to girls, though some believe the ratio is actually 16:1, more recent data suggests that the accurate statistic is likely 2:1 (male to female) or may be even more evenly matched between the genders.
Dr. Judith Gould of the Lorna Wing Center and Center for Social and Communication Disorders believes that current statistics about the prevalence of girls with Aspergers are under-representative citing a 2.5:1 ratio.
Tania Marshall did her docturate in Asperger’s in females, has published a number of books on the subject, and is currently practicing in this sub-specialty. She has found that it’s quite common for girls to fly under the radar until at least secondary school when communication and interaction among girls becomes more emotionally-based and a social hierarchy begins to develop. Females are better at concealing it and emulating those behaviors that are socially acceptable (referred to as masking).
For those adult women on the spectrum who are now in their 40s and 50s virtually no diagnosis of girls existed in the 1960s and 1970s when females of this age were children, so many women are just now obtaining official diagnosis and having to make up for a lifetime of struggle, misunderstanding, and riducule from those who mistake their condition for something else.
Back in those days nobody believed that girls could have Autism, so other euphemisms were used in lieu of official diagnosis when they were taken to neurologists and/or neuropsych tested. (I have miraculously managed to keep a report I had when I was tested at age 5).
This is in effect what happened to me. Neurologists have been telling me for years between the lines with statements such as “Your brain is wired differently” and “Your brain’s not hooked up quite right” and when I asked what I could do about it they were at a complete loss as to what to tell me.
In those days there really were no effective interventions or coping mechanisms. With all the stigma attatched and ignorant people out there confusing Autism with mental retardation, I really didn’t want to “go there” having been given the message that this was a family secret that shouldn’t be explored any further and was better left alone. I pushed it to the back of my mind telling myself it must not be true because all the media images of Autistic people were of children wildly out of control and non-verbal 24/7, 365 days of the year. That was not what I was like, but I had some of those problems at one time or another under certain circumstances and alot of the other quirks I had and still have I didn’t know were actually indicative of it.
When things went South at school due to my inability to focus my parents just switched me to a different school to avoid the inevitable questions that would ensue.
Throughout my educational years I was luckier than most in that I didn’t run into much bullying except for at a new private school in 5th and 6th grade in which the girls were especially snooty.
Then in high school I just tried to remain as invisible as I could and other than appearing a bit shy, nerdy, and separate, nobody really suspected nor bothered me.
I really thought this was something I would take to my grave as I figured things couldn’t get any worse with my just going on with my life and I was used to coping the best I could. It worked fairly well for awhile and I managed to “pass” except for a period mostly in my late teens and 20s when it was mistaken for other problems for which neither therapy nor medication did much good.
Been there, done that, so thanks but no thanks in case anybody’s thinking of suggesting that, LOL. Good old Dr. H. was and he couldn’t have been more off-target. I received some highly disorganized medical records in the mail at the end of last week which included doctor’s notes.
He and Dr. V’s Nurse Practitioner both floored me with their outlandish interpretation of what was going on with me medically; cynical verbiage that I won’t even dignify here because it is so judgmental and unkind that it’s unbefitting anyone who calls themselves a”medical professional.”
Dr. V’s first entry was pretty bad too, but she seemed as best as I can tell to reverse her opinion once more data became available about my Dysautonomia and I had a chance to disclose to her about the AS. (She did officially diagnose my Dysautonomia after our last visit on June 3rd, by the way, so that’s progress).
I’m pretty sure she’d just automatically gone into the first visit with a bias from what The Dark Man had charted. Even though she’d changed her mind later, it really scares me how easily influenced these doctors are to think the worst of a patient.
It appears that Dr. T steered clear of the pile-on and kept her notes constructive; good woman! ♥
These other people were in actuality seeing symptoms of my Aspergers and charting tidbits about my little quirks here and there and interpreting and/or knowingly misconstruing those traits as something almost willful on my part, poking and prodding at it as one would bat at a pinata!
Now I know why they were treating me like some sort of criminal or dangerous individual to be feared and loathed.
Such is prejudice in its ugliest of forms. And now it all makes sense why the spin they put on it is so ego-dystonic to me, because not only were they proposing something I don’t have in me, but it’s the very antithesisof who I am.
It is they who are dishonest and have duped me into believing they were actually trying to help me, smiling and pretending to like me and creating this ruse of positive relationship that I was unable to see through because of my Aspergers!
I find myself now unable to trust another doctor and I don’t know if I will ever be able to, at least not for a long time, because how can I trust when people are being genuine when they can so easily lie to me with a straight face? How can I know that they won’t write these terrible things again that are so untrue and unfair about me?
When I became really ill with the most recent illnesses, the protracted suffering and stress due to the institutional bullying, slow-down, and stoppage of care that I was subjected to over the past year (especially the past 7 months) caused my AS to become much more obvious.
I am now at a stage in which I don’t think I can put the Genie back in the bottle. Now there is one more problem that I need to do something about and find services for soon. Try finding services for a 55 year old adult woman in Georgia on Medicare. It’s not easy, and in fact nearly impossible.
Because of what’s happened at Emory it is no longer stable and manageable and I’m pretty sure this destabilization is permanent. People have no idea what I’m dealing with at home.
Now that I’ve decided to come out publicly I am trying to embrace it as best I can and use the positive aspects of it with which to cope. Although I didn’t want to open up this can of worms initially I am trying now to make lemonade from these lemons and educate the public so that this won’t happen to others who have to go to the doctor for some medical problem and risk falling victim to such atrocity. Maybe others can learn from my process and together we can make the world a safer place.
In 2013 A UK study published in the medical journal “Brain” began uncovering the differences between males and females who have Autism, not only in how they present symptom-wise, but in terms of brain structure.
The Cambridge research published in this esteemed neurological journalused MRI (Magnetic Resonance Imaging) to compare males with and without Autism, and females with and without Autism.
What they discovered is that overall, males had greater tissue volume, but that females’ brains with Autism more closely approximated the male brain than did Neurotypical females (those without Autism).
However, males with and without Autism did not show structural differences from one another.
A growing number of experts feel that testing remains behind the times, having been devised to detect Autism in males and that this may account for the under-diagnosis of females on the spectrum.
Many females present with symptoms often mistaken for mental health conditions such as eating disorders, drug abuse, etc…
Women with this brain orientation come from all walks of life. Some are unemployed,
some are professionals,
some are single,
and others are married and/or with children.
They come with all different combinations of skills and challenges. Some look obvious and others, you’d never know unless they told you.
Despite the fact that adult services remain hard to access, there is hope in that more research is being done with adults, and more is being learned about how to cope with it in addition to a growing advocacy movement by and for people with Autism. I will leave you with this beautiful music video by a fellow Aspie woman. Her voice is absolutely lovely. Please share and raise her up.
Just when I thought things couldn’t get any worse…on Thusday, June 30th they did. Transportation came late and my assistant and I were worried we’d get there too late to be seen at Dr. T’s office at Emory Sleep Medicine at the 12 Executive Park location. The driver was confused and was about to take us to Clifton Rd. (main campus) but I told him he was heading the wrong way and he turned around just in time stating his GPS was taking him the long way.
There was no time for wrong turns. I was on a mission to bring airline forms to Dr. T. and Dr. V. (whose offices luckily were in the same building) regarding my oxygen concentrator.
I’d printed out forms for both Delta and United figuring those were the most likely two that the GA. Medical Care Foundation might book the trips with. I would need one or the other of the two doctors to sign off on my need to bring my oxygen on board the plane so that I’d run into no problems when it came time to travel.
We got off the van and went to the 4th floor where Dr. T’s office was located. We arrived to find a packed waitingroom. There was a heavy-set black female patient at the front desk carrying out a lengthy transaction to reschedule an appointment. She was wearing a portable oxygen concentrator and the young receptionist behind the counter lingered, typing on her computer. It seemed as though I sat there for 5 minutes. I looked at my watch seeing it was 10:45 already and still not checked in. The last thing I needed was to be considered late on such a crucial day.
The night before I’d sent detailed messages via the Patient Portal to both doctors so that things would would go smoothly and hopefully the forms for the airlines would be signed and handed back to me while I was there, but no such luck.
As my assistant and I waited I saw Dr. T pass through the receptionist area. I waived expectantly to her and she made eye contact with me and smiled her acknowledgement on her way in and out of one of the adjacent rooms. All the while I had no idea what was to come. I thought she’d be coming out to see me shortly, but the next thing I knew a portly, middle-aged white woman with shoulder-length wavy blonde hair called me back.
“Hi” I greeted her. “Are you the nurse?”
The woman stammered a bit and explained that no she wasn’t but that she’d explain. I followed her to a room on the hallway to the left-side of the receptionist desk. As we entered one of the rooms she sat behind a small computer desk and I in my wheelchair, across from her. Not wanting to waste another minute I launched into my request about the airline forms that I needed the doctor to sign. I explained that I was due to travel on July 6th, just a few days away. It was clear from her response that she was fully aware of my Portal message from the night before, but she stopped me in mid-sentence.
“Before you get started, I need to tell you; I’m the Office Manager. Patient Relations has been calling us all morning telling us that you’ve been terminated from the clinic and that we aren’t allowed to see you. I was going to save you the trip over here but it seems you’d already left. Because of the termination I can’t give those forms to Dr. T. She won’t be able to speak with you or fill them out.”
I felt suddenly as though someone had punched me in the gut. I could hardly believe that after all this that Administration was still placing obstacles in my way. It was at this point that the full impact hit me. Tears began pouring from my eyes.
“Look”, I said. “This is what happened. I was abused in the ER in December and instead of doing the right thing and correcting the problem Administration is covering it up.”
“I don’t know the story” she replied.
“Well now you do,” I said looking her dead in the eye. “I am honest as the day is long! They called in a sadistic neurologist to scare me and he beat me with his hammer, then had his female resident come back into the room afterwards and plop her butt down on my foot. Then he put defamatory things in my chart to destroy all my doctor/patient relationships so I could never get help. This was an impaired professional with an anger management problem.
Think about it. If I were what they’re painting me as I would be in a mental hospital right now after the past 7 months of harrassment Administration has put me through since the incident. You have no idea the tactics I’ve been subjected to. I must be one hell of a strong woman to withstand all that and still be talking to you rationally as I am now! This is not right! I was the victim, not the perpetrator and now I’m being punished for something they did to me!“
“That’s all the more reason why you should probably get your care outside of here and start somewhere fresh” said the Office Manager.
Tears continued to flow down my cheeks. “This cannot be allowed to happen. This is not the time!”, I pleaded. “I’m actively ill! It’s not like I’m coming in for a routine check-up. I really needed this appointment. I’m so sick that I need to go out of town to these top level specialists to get more advanced testing than I can get here, but nevertheless, I still need my neurologists here locally to come back to afterwards. Dr. T treats me for the Myoclonus. and Dr. V was fully intending to help me get these evaluations but Administration is sabotaging my trip!
I’m supposed to leave on July 6th! I don’t have time to start over right now with all new doctors. Don’t you understand? I’m sick and need to go soon so they can find out why! I’m waking up multiple times a night choking and gasping for air. My hair is falling out. I’m Dysautonomic and nobody knows why. They can’t do it here in Georgia!”
“I’m not a clinical person”, said the blonde-haired woman. “I’m just an Office Manager so I don’t know what to tell you in regards to that.”
“Also, I need those sleep study tapes because the specialists need to see my abnormal movements for themselves. The reports don’t go into enough detail although they had some EMG leads on me. The report didn’t document the rate of the jerking, only said that they picked up the movements but that they weren’t PLM. They are some sort of Myoclonus but they don’t know what specifically. They present at the onset of sleep and only under certain other circumstances like when I’m lying on a hard surface or my upper body gets too cold.”
“The reports will be good enough. The problem with providing the tapes is that it requires a certain kind of software to view them that’s not compatible with anybody else’s.” On the face of it that sounded a flimsy excuse at best, and at worst it may have been a lie.
“These out-of-town appointments took months to get” I continued, “and if I have to reschedule it could be up to a year for me to get another appointment…And also…I need to tell you something. I have (condition that can’t be named at this time) which is a neuro disorder; not psych, and therefore I don’t do well with this sort of disruption to my life. What they’re doing is really not good for me.”
The Office Manager seemed to soften for a moment. “I understand, and I empathize, but there’s nothing I can do” she said lamely. “Because we’re not a private practice the doctors here have to go by what they say to do. It’s now in the hands of Patient Relations.”
“Patient Relations is just a mouthpiece for Administration”, I replied. “They aren’t going to do anything. Do you want to know what their idea of an investigation is? They ask the perpetrators what their side of the story is, write it up, and send it to the patient. That is not a fair and unbiased investigation! I used to work as a patient advocate. I was instrumental in designing the Protection & Advocacy system in the state of Georgia. I never did my investigations like that!
I pulled the forms from my white 3-ring binder. “Here. Give these to Dr. T. just in case. Without this I can’t board the plane with my oxygen concentrator.
She needs to go to bat for me as my doctor! Have her tell Administration that blocking my care here and sabotaging my trip is putting the patient at risk. Have her advocate for me!”
The office manager looked at me from across the desk. There was a sense of futility in her body language. I found it increasingly difficult to look at her.
It seemed as though tears came in waves and then in-between got stuck and wouldn’t come out. I felt as though the wind were knocked out of me. I covered my eyes and leaned forward in my wheelchair teetering on my seat. I opened my mouth and no sound would come out.
Somehow it seemed especially cruel knowing that Dr. T. was just a room or two away but could not come in and speak to me. They didn’t even have the decency to let me talk with her one last time.
Even that being the case, all they had to do was have her sign my forms and bring them back to me but The Almighty GD Administration was like a huge fart in the room, rancid and putrid and taking precedence over everything that was rational.
The Office Manager was like a deer in the headlights, a lemming walking automatically over a cliff. Only one thought entered my mind at that moment. No job is worth casting a patient still in need of care out into the street to God-knows-what fate. The finality of it all fell like a thud to the floor.
After awhile she followed me out into the waitingroom, still packed with patients. I was still crying. My assistant was not where I’d left her. The Office Manager asked me her name, I told her and she said she’d try to look for her. At first she couldn’t find her but came back and took me back the other way to a waiting area that was less crowded.
“I’m just getting you more upset” she said turning to her right as if to leave.
“No you aren’t. It’s not you, it’s them” (meaning Administration). I reached out my hand and she took it. This was bigger than either of us. She asked if I could wait there for a minute and she’d try again to find my assistant. I nodded. In a few minutes she returned with her. The Office Manager explained to my assistant what she’d said to me about Administration not allowing Dr. T. to see me. I told her to ask Dr. T. to do everything she can to stand up for me.
My assistant turned to her. “So you’re basically saying that she needs to find all new doctors?”
“Yes, pretty much”, said the Office Manager.
“Let’s go call transportation” my assistant said to me, turning away from the woman in disgust. “We can do it from downstairs.”
“I need to give these other airline papers to Dr. V. on the 5th floor first and try to talk with her nurse before we go.” We headed toward the elevators in the main hallway. As we were leaving the Office Manager called out after us “It might be a waste of time for you to go down there because Dr. V. won’t be able to do what you need her to do, but you can try. Good luck with everything.”
The first one to arrive was too full, so we opted to wait for the next. Once on the 5th floor I approached the reception desk and asked to speak with J. Dr. V’s nurse and the receptionist told me she’d call her.
In just a few minutes J. came out and introduced herself. She told me Dr. V. was only here on Fridays. I told her the situation and asked her to ask Dr. V. to advocate for me and advised her to get in touch with the Union rep about this situation because Administration is putting pressure on medical professionals to act against the best interest of patients. She said she would and wrote some notes on a small post-it pad.
I handed her the airline forms and asked her to give them to Dr. V. The nurse said she’d call me. Once we’d gotten home I checked my phone messages and found both the confirmation of that day’s appointment and a later message from A.B. of Patient Relations stating the appointment was cancelled. The following is a sound file of the confirmation and the message from Patient Relations.
By the time my assistant left at 3:30 PM on Friday no call from the nurse had come in yet to confirm that the form had been completed and faxed over.
The next call on the tape is from a contact person at Medicaid informing me on June 1st that the GA. Medical Care foundation had still not received my paperwork from my doctor. Late last night I saw a Patient Portal Message. I logged in and it was a goodbye letter from Dr. V.
Corporate had prohibited her and any of my other doctors from seeing me. A message just underneath from the nurse which merely typed the instructions for the GA. Medical Care Foundation process implied that the paperwork had never been filled out or faxed, thwarted by the top brass at Emory Healthcare.
No reason was given to Dr. V for the “release” as Corporate so euphamistically referred to the expulsion (as the real reason; discrimination and retaliation for filing a complaint is against Federal law so they wouldn’t admit to that).
I wrote back to her telling her that I don’t think I can bring myself to start over again with a new neurologist, that I wanted to keep seeing her and that maybe she should contact the Union and tell Emory to take this job and shove it if they wouldn’t budge on this issue.
I left her my number and asked her to call me if/when she goes into practice somewhere else. I said that there is a shortage of good female neurologists in the Atlanta area and especially ones who really care about patients, and that I could tell she does. When you’re ill like I am and have been through what I have, being more than just a number, having a doctor who cares if you live or die and is truly invested in you is especially important.
Until I’d spoken with the nurse the other day I thought she’d worked there fulltime but in fact it’s only half a day on Fridays, so I guess it wouldn’t be any big financial loss if she decided to tell them to stick it up their collective posterior!
I cried most of the night and woke up crying again this morning.
We are not a bunch of chess pieces (patients and doctors) for Administration to move around at will!
We are people with real relationships! To destroy those relationships which can even determine life and death for a patient is to do harm!
Logistically I don’t know what will happen to me now or who will fill out the forms necessary so that I can get the care I need.
What the suits in the ivory tower fail to understand is that in order to do those kinds of things a relationship, a connection must be there and the doctor has to care about you. You can’t just find that in any doctor, and if a patient finds a good one it’s best to keep them.
I looked out there plenty before I saw Dr. V and after the first appointment (knowing Emory had her by the short-hairs) and I didn’t find it. Then as I got to know her I realised she was it. She would have done all that…if Administration hadn’t in effect held a gun to her head not to.
If you are a patient who has been mistreated at Emory please see this post; and contact me privately to give me your written signed statement. It’s never too late to make your voice heard.
Recent events have gotten me thinking now about the need for linkage with services to help chronically ill people when it becomes necessary to seek help outside their local communities. To know just how big a need there is out there you have only to look at GoFundMe, Youtube, and a variety of other public online forums. There is help available but it’s not always well-publicized. The financial cost alone to travel out of state can end up more than you have.
Most of the specialty clinics don’t cover lodging, and consultations are usually done on an outpatient basis, so that often requires staying in a hotel for several days on your own dime. For many on a low income and/or uninsured, this is impossibility without some financial assistance. The question is; where to look? When I found out that my local Medicaid transportation broker doesn’t transport people for over 50 miles, and the hotel fee for 4 or 5 days in just one of the two cities I need to travel to next month was going to cost most of my Disability check and that I would be forced to default on my regular monthly bills (already behind) in order to go and receive the more advanced medical help I need I was frantic and really bummed out.
I was able to find a non-profit organization called The Georgia Medical Care Foundation that covers airfaire, lodging, and food for the time one has to be away for special testing, assessment, and/or treatment. This organization is connected with DFACS (Dept. of Family and Children’s Services).
If you live in Georgia and need financial assistance for such a medical trip have your doctor call (678) 527-3000 and have them fax him/her their application form. They will want to know your name, date of birth, dates and addresses of your travel, and possibly some medical information. Once the doctor fills it out, faxes it back, and you’re approved it then goes to Ginger Henry, the contact person at DFACS who cuts the check (404) 657-3596.
At first somebody gave me incorrect information that the funding was probably by reimbursement (which would have made this an inaccessible option for me), but when I spoke with another representative I was told that it is issued to the patient and/or airline/hotel up-front.
My neurologist, Dr. V. left word yesterday through one of her nurse practitioners that she’d be the one to fill out the form ( a big relief, since as of my last post no doctor had yet committed). I need to call my contact at Medicaid in the morning to follow up on where my application is in the process. I hope Dr. V. got it filled out and faxed back yesterday.
In my search earlier for other resources I found this webpage you might find useful which covers resources throughout the US that are available to help with various medical needs. There is also a section where you can search by state. You can also contact your state legislature to find out if they have set aside an indigent care fund (many states do). Your local representative can probably tell you if such a fund exists where you live and find out what the process and criteria is to access it.
There are also some illness-specific groups and organizations that will help financially.
I’m having alot of pain extending from the center of my spine inward to my abdomen, feeling as if someone has kicked me in the stomach, and waking up every few hours each night now with my body temperature all dysregulated; burning hot, then freezing cold, so I hope that the doctors at these clinics can find out what’s causing this and that there is some treatment that will get it stabilized at least. It is getting to be a bit too much.
I had about 2 weeks reprieve from the GI symptoms but they are back again. Now when I go to the bathroom my bowels feel like I’m passing shards of glass, and yesterday evening I noticed the toilet paper dotted with blood, and both back and front feels raw. I can’t tell whether I have another infection or if it’s something related to my Dysautonomia, or a combination of both. It’s 5:42 in the morning and I just took some pain medication so that I can hopefully get some sleep before the personal assistant comes at 9:30 AM.
Nothing about this diagnostic process has gone smoothly, but transportation was the one thing I thought was wrapped up. I’d called Southeastrans (Medicaid’s transportation broker for this area) a month ago to find out what the process was and was told that they’d schedule these out-of-town trips just the same way as they did the in town trips; that I just needed to call their main scheduling number and they’d set it up.
Meanwhile I set about requesting all the necessary medical records (two discs for each of the two doctors).
The sleep study tapes were elusive and I found out that Radiology nor Medical records has those accessible; that they were handled by another records department connected with Sleep Medicine. After about a full 2 days I finally got routed to the right department, but initially only the latest sleep study (July 2015) was showing up in the computer database. I had 3 sleep studies in all (each of which yield important data that any top level specialist will be able to see the significance of in the diagnosis of multi-system disease). Researchers who are up on the latest medical knowledge understand that sleep studies are often the first sign of such disease processes and they give important markers that may not be fully detectible via other tests for years. Finally after much searching around somebody suddenly located the other 2 tapes and I was told they were being copied onto dics as we spoke.
I suddenly found that people who answered the phone in the various departments and call centers were greeting me in an uncharacteristically friendly and helpful way, asking if I were “having a good day”, some almost as if they knew who I was, and this time when I called to schedule my follow-up appointment with Dr. V. the appointment went through! Suddenly people were actually returning my calls again and they were not proxys but those whom I had asked to call me back!
It remains to be seen whether or not everything is unblocked now since they received my cease and desist letter. I hope it is and that I will have no further blocks on my scheduling from here on out. I have since received no explanation via Patient Relations nor from Administration directly as to whom initiated the block and the circumstances under which their Chief Medical Officer was called in.
Good old Dr. H. the pulmonologist may have helped me much more than he knows. Even if he (the subjective human) has or had doubts in the short-term about my underlying condition(s), his objective data reveals important tuths that can’t be denied. Within these studies could lie the key to my underlying condition(s) and when viewed by the right specialists who understand patterns and correlations it could be my salvation, and will very likely get my treatment back on track.
Maybe in time he will come to understand that his hunch about a central process in the Pons and/or Medula was correct all along. (Afterall, that was one theory as to why I had the slowness of muscle transmission in my left leg EMG results). Not that anyone would want something to be wrong there, but sometimes a doctor’s admitting he was wrong in his doubts of his first instinct and the patient’s instinct is the best thing for the patient and for the doctor/patient relationship. If the underlying condition(s) can be identified, caught early enough, and treated with the best science has to offer, maybe all’s well that ends well, and all of us can go home satisfied.
I have always and will always maintain that my team of doctors need to keep their eye on the ball and avoid becoming waylayed and distracted by other agendas. The doctor/patient relationship is paramount, and anything that stands in the way of it must be removed. Such distractions are exactly that; distractions, and must be put aside if one is to serve the best interest of the patient. This is an ethical and moral imperative above all else.
There is enough evidence now that something serious is going on in my body, and so I hope from here on out my doctors can dispense with any questions they may have had in their own minds as to that reality, so that we can put our collective effort into finding out what that is.
Well, back to the transportation issue which pulls all this together; I called Southeastrans last week to set up the trips to these two out-of-state specialists and suddenly got the response from the scheduler “We don’t do that.” The scheduler got her supervisor on the phone and she told me that even my Florida trip was too far for Southeastrans to travel; that their broker system only takes people within a 50 mile radius. She did not know of anything else. My heart sank. Knowing that this is a major consideration and that I cannot afford to cover transportation out of pocket with my tiny Disability check amount, I persisted, asking what the process is to get it authorized, as I knew I’d heard from other patients that they were covered for longer-distance trips, especially when their home state did not have the proper testing facilities and specialists and were at an impasse. Surely they couldn’t just leave indigent patients up a creek without a paddle.
The hotel in Cleveland Ohio has been booked, appointments have been made, and records have been ordered on disc, along with many hours of logistical telephone calls, blood, sweat and tears on my part. I have done the majority of the work myself to facilitate these independent evaluations and I was going to be damned if a technicality so idiotic would stand in the way now. I called the Medicaid Commissioner’s office whose aid then put me in touch with another department and there I spoke with a man and a woman who basically told me it was not going to be a problem; that all I had to do was have my doctor fill out a form with a foundation affilliated with Medicaid that would cover airfaire, lodging, and food for my trips, but advised that my doctor start the process right away since time is running short.
I’m supposed to be boarding a plane bound for Cleveland, Ohio on July 6th, come home Monday afternoon the 11th, and then head out to Gainesville, Florida early the morning of July 13th to arrive there at 9:30 AM for a full day of testing. It required my scheduling the Cleveland Clinic appointment 3 months in advance, and the one in Ganesville, FL, 6 months in advance. All their other doctors were booked a full year in advance, so I was lucky to get an opening in 6 months as it is!
I couldn’t imagine there would be any problem in having Dr. V. fill out the certification form so that this non-profit organization could ensure these evaluations came to pass, but I was wrong in that assumption.
My detailed message containing the process, foundation’s phone number, and my necessary information sat on the Patient Portal for about 2 days un-forwarded (Dr. V. was unaware of its contents since somebody else needed to forward it to her first). As soon as I realized the doctor had not received it herself I called by phone and was told by a representative in “Brain Health” that she would then mark my message “high priority”.
Soon afterwards I received a reply with a nurse’s name on it as though she were forwarding a message from the doctor asking me to ask my new GP to fill out the form instead (the new GP who does not work for Emory). I could not believe this! There is no time to waste, and besides, why would Dr. V. not fill out the form when she herself wanted me to have these consults? It didn’t make sense. This is one delay that could throw a monkey wrench into the whole thing, and I don’t know how long it takes to process once the doctor does fill it out and submit it through the proper channels. My first date of travel is about a week and a half away (not counting weekends), and nothing is nailed down yet! I wrote back saying I would ask the new Primary Care doctor (Dr. P), but that if she says no and feels it’s the job of my neurologist to do since these are neurological consults, then I will still need Dr. V. to do it. I impressed upon her that time is ticking away and I can’t afford for anything to go wrong. I have not put in all this work and effort just to lose this opportunity.
With no local autonomic clinic close by, and my abnormal movements being not your average garden variety movement disorder, these doctors (if they care about me) should move heaven and earth to see that I make it to both appointments and do everything they can on their end to make it happen. It’s just the right thing to do.
After I got off the Patient Portal I immediately wrote a letter to my new PCP with the same request I’d sent Dr. V and faxed it to her. I have since found another fax number on some other paperwork from her office and am faxing it to that number as well (to make absolutely sure she receives it).
I hope to God that when I follow up on Monday that I’m told it’s been done and being processed by the foundation that issues the funds and makes the arrangements and that all this will be in time for it to go off without a hitch! It hasto! I don’t think I can wait another 3,6, or 12 months to reschedule and arrange this over again.
It seems as though these big healthcare corporations are devising boilerplate FU letters to send patients when they’ve messed up and mismanaged somebody’s care and want to shift responsibility. Such letters are very unwise. The thing is, they will not hold up under federal non-discrimination laws and patients will prevail. Any legal department will clearly see that and advise the corporation to retract such actions.
It’s always a wiser tactic to do the right thing when you realized you’ve F’ed up a patient’s care and do something to correct it and satisfy them from that point forward than to follow one bad decision with another, follow one lie with a bigger lie. In the end no amount of money or image is worth covering up wrongdoing and throwing the patient under the bus. This is the care of human lives we’re dealing with here, not inanimate objects. Earn that image and you’ll have no problems.
There really is something to be said for going that extra mile for the patient rather than doing the least you can do or standing in their way. In healthcare even more than other businesses, true customer satisfaction is very important.
I sincerely hope that Dr. V. will come through when all is said and done and that she will have safe passage to help me maximally, unfettered by competing interests and unbeholden to her employer. As I said earlier; the doctor/patient relationship is paramount. I want to trust that in the end she will put my best interest first no matter what comes. I cannot be let down by one more neurologist.
Being chronically ill there are times we need help with certain aspects of everyday life. If you’re lucky enough to have a good support system of people living with you and/or coming to your home to help with things like grocery shopping, cooking, bathing, house cleaning, running to the pharmacy then this might not pose a difficulty for you (other than the initial embarrassment of having to ask for the help you need, or worrying about whether the people in your life will feel imposed upon).
If you have nobody to help with such activities because either nobody you know commits to help out or those people in your life are limited because of work obligations during a large part of the week, you may need to look into hiring a professional service.
At the outset this can seem a monumental task especially when you’re fatigued or brain-fogged, but it is often essential.
To many homebound/bed-ridden people this can make the difference between having quality of life or not, and sometimes it can even be a matter of survival if for instance you run out of food and are unable to go to the store yourself and get what you need to eat, or you run out of medication or need a new medication urgently for an acute medical problem and have no way to get it yourself.
The idea of having a total stranger coming into your home to help with activities of daily living can be a little unnerving but there are steps you can take to make it less scary and more safe. There are a whole array of agencies and individuals who provide home-based care and their fees vary depending upon the level of skill they have, their education and licensing, and often the length of time they have experience in the field.
One can find relatively basic care-givers who have informal experience taking care of a loved-one, all the way up to people who are licensed to provide skilled nursing duties, and everything in-between. The majority of this work, though, is performed by CNAs (Certified Nursing Assistants).
You will want to ask agencies whether they’ve done background checks on those they employ and what those checks consist of, whether they do a drug-screen, check references, etc. If you are able you might also want to do your own once you have picked out or are assigned a specific care-giver. You might even want to place a “nanny-cam” in your home as a safety measure. While in-home abuse or neglect by professional assistants is relatively rare statistically (especially when you obtain someone from an agency), it does happen, so although you might never run into such an incident, having daily activities on videotape is a good idea if you have the means to do so. This also verifies that activities performed in other parts of the house not in your presence are being completed, as agreed.
Once you meet the person you should also ask them what kind of experience they’ve had with your type of illness, assess how much they know about it, how willing they are to learn about it, and tell them your needs. You will get a sense of how they are from their response. If they sound confident and receptive to what you need them to do then they are likely a good fit.
If on the other-hand they are resistant to providing this or that, or they sound oppositional, ill-equipped either experience-wise or emotionally this is a red flag and you should ask for somebody else. Even on Medicaid you have the right to request a different assistant if you do not feel comfortable with the one assigned. If you are paying privately you will have the opportunity to interview a variety of people at the outset and choose one.
You can find personal assistants on sites such as Care.com and Angie’s list, as well as through senior and disabilities organizations, the United Way helpline, and on the internet.
These agencies and individuals generally fall into two categories; private pay, and Medicaid. (Generally Medicare does not cover these services and neither does private health insurance). Occasionally a long-term care insurance policy might cover this type of help but not all of these services accept it as payment, so you might have to do alot more calling around to find one that does.
If you’re on Medicaid (either as your primary or secondary insurance) and you are having significant problems doing things such as cooking and cleaning, bathing, or getting out of the house to buy things you need you will likely qualify for one of Medicaid’s Waiver programs.
Medicaid is state-funded, so the programs in your area will vary based on what your individual state offers, but most states have some help of this type available. Generally you would call your local Medicaid office to find out what the process is and they will send you forms to fill out about your needs.
If you live in a country other than the US it is likely your country offers something similar. I know that the UK has a very good government funded system of professional care-givers (which makes ours pale in comparison and is generally free), and Australia has one as well.
Each Medicaid Waiver category has slightly different criteria and there may be several offered, so you may want to ask them to send you a booklet on all the ones in your area to decide which one best fits your needs and situation. There are usually waivers for adults and ones for children. Since there are a large number of applicants needing help and funding in this day and age is limited there is likely to be a waiting list even after you’re approved, so it is best to apply as early as possible so you’ll be less likely to end up in a bind.
Still sometimes applying promptly doesn’t guarantee that services will come through in time and when that happens getting the help you need may be costly or downright inaccessible.
I recently ran into a situation in which I had to have a colonoscopy and Emory was going to cancel it if I didn’t have somebody with me. I’d already drunk the prep and gone through considerable upheaval by the time they told me my having nobody to come with me couldn’t be accommodated, so I had to pay about 1/4 of my monthly Disability check to hire someone for the day. Had it fallen in the middle or end of the month I literally wouldn’t have had the money to do it, and even now I cannot pay other bills because I’m out the money that ordinarily would have been used to pay my monthly living expenses.
I called the same agency I’d applied for the Medicaid waiver through (ironically just a week or two later Medicaid approved me for the program). They emailed me a contract to sign and added a credit/debit card on file for them to charge once services were rendered. My experience overall was good and it gave me a chance to test-drive the service and get a feel for what it was like.
A woman arrived at my house on time the day of my procedure. She was personable and I filled her in on the situation and we talked while we waited for transportation to show up. She loved dogs which is a plus, since not all of them do, and went to speak with Carmella who was whimpering in the kitchen wanting some attention. She told me she had done this type of work for many years and told me about some of the clients she’d worked for.
Things went smoothly. The only thing I would change is I could have used somebody a little more assertive, as there were a few times when people at the outpatient center were not listening to me and taking my special needs into account where I needed her to step in and back me up. She was rather flabbergasted at these incidents though and noticed that some people were not respecting my dignity and were treating me like a number. She noticed, for instance, that after her colonoscopy they had her in recovery for about 5 hours while they rushed me out after only about 15 minutes and that they tried to unhook the IV before all the fluids had finished.
On Friday a woman from the agency came out to my house to complete a nursing assessment once they’d determined that I’m eligible through Medicaid. She asked me what my needs were and my limitations. (I believe the nurse comes out once every 90 days).
I was approved for an assistant 6 hours per day/5 days a week (which isn’t bad for the type of waiver I applied for). This is a huge relief, as so much has had to go by the wayside because I just can’t do all these things myself anymore. Just going to a doctor’s appointment and being out of bed that long is extremely taxing for me, and vacuuming the floor is now pretty much impossible. I have no way (nor the physical strength or stamina) to lug a load of groceries on my wheelchair from the grocery store, so having somebody who has their own car is crucial. Next month I am going to need to replenish alot of food and supplies, as things have run out and I’ve been unable to go to the store myself. Now that my stomach is so unpredictable I will need to have a large, ready supply of things like chicken broth and the weight of just 4 of those boxes of broth weighs quite a bit. Carmella’s dog food is more than I can lift these days too.
Apparently Medicaid doesn’t pay for mileage for an assistant to drive their own car to go to the store, pharmacy, etc, so that is charged .70 per mile private pay. I may need this once to about 4 times per month and the distance to most of the stores and pharmacy isn’t far, so I don’t think that will be too much of a problem.
I made a list of things that I need for the assistant to do. Most agencies will give you a ring binder with timesheets and other information in it. You should add your list to it so that whatever caregiver you get can easily refer back to it. Explain to them verbally (and if possible in writing as well) how and when things need to be done, whether you’re on any special diet, whether you have any food allergies, food brand preferences, what you generally eat for meals, and any other special needs you have that they should be aware of.
Make sure to ask the agency what their back-up plan is in case the assigned care-giver is out sick or has a family emergency and how quickly they can get a replacement.
With concise organization and clear communication your assistant will make your life easier and less stressful so that you can focus on things other than logistics. This is invaluable and can save you alot of frustration and prevent you from over-extending and over-tiring.
PatientsRightsAdvocate.com 