Did you know that your “confidential” medical information is worth 10 times more than your credit card number? Yes, there is much more to fear than just losing your name, address, and social security number. Recently I was notified by … Continue reading
Often medical blacklisting is done in more insideous ways and rarely in the literal sense of the word do you find it as a physical list. Blacklisting deniers commonly use this as a reason to doubt that such things … Continue reading
Yesterday I received a letter from Emory Healthcare notifying me that there had been a security breach affecting patients’ electronuc medical records and that I was one of the people affected. Two years ago after defamatory statements had been written … Continue reading
For my second post for #Blogmas 2017 I came across a story that every mother and father should read! A mother, Mandy Drew in Alberta Canada was told her daughter, Cheyenne was hopelessly ill and that she should “take her home and create memories.” Doctors threw up their hands and gave up on the little girl after she continued to worsen in traditional chemotherapy. Tumors were wrapped around vital parts inside her body, making the situation that much more complicated.
Her mother, faced with no options from her daughters treating professionals considered medical cannabis given the fact that at this point there was really nothing to lose. If she’d done nothing death was a 100% certainty! Although a little skeptical at the outset, Cheyenne’s mother decided to give it a try, but she had no idea that her daughter would be medically blacklisted nor the level of hostility she would receive from the medical establishment. One doctor who during a phone call asked Mandy what she was doing in her alternative treatment literally hung up on her when the mother told her she was treating her with cannabis oil.
Despite the rejection and anger directed at her for this treatment choice, the Alberta mother reported that her daughter began responding with just 1 gram per day. She began to notice her apetite return, her mobility improve, and eventually it was discovered that her tumors were calcifying (a sign of apoptosis, the scheduled death of the cancer cells)! Now at age 4 and having already beaten the odds, Cheyenne functions like any other 4 year old, is symptom-free, and doesn’t even have any awareness of her diagnosis.
Her mother appeared on this radio show which was posted to Youtube on January 24, 2007 to speak about her experience. The host also gives some very interesting information from research suggesting that many illnesses may be caused by a deficiency in the body’s own cannabinoid system. Apparently there is a lab in the US offering a test to see whether your illness(es) are due to this deficiency or dysregulation. Watch the video for yourself to hear this woman and her daughter’s amazing story!
Yes, medical blacklisting happens to children too, even dying children, and it’s a shame that doctors and the corporations they work for are so arrogant that they would turn their back on someone like this when they have nothing better to offer. Corporate healthcare has in effect taken the patient out of the equation, when in fact the patient (or parent when the patient is a minor) should have the last word when it comes to treatment decisions, and more often than not, the patient is correct about what is likely to work.
Whatever a doctors opinion on cannabis or any other treatment for that matter, he or she should keep an open mind and support the patient’s treatment decision. Most patients who have decided on a particular treatment they want to pursue do so after alot of careful reading, research, and thought. Therefore they should not be treated as crackpots or loose cannons when approaching their doctors.
These patients are already suffering and it only increases their suffering for a doctor to work at cross-purposes with a patient that he has stopped or refused to start treatment on. It is not only heartless, but unethical for a patient’s treating professionals to ostracise a patient for doing what they have to do to save their life or the life of a relative who is in their charge. It may be OK with a doctor to throw in the towel, but it shouldn’t be, especially when there are other things to try which he/she either have not looked into or flatly refuses to consider.
A doctor or a healthcare system should never be a gate-keeper between a patient and the possibility of improvement, preservation of or quality-of-life. To do so is in clear violation of the Hippocratic Oath. Healthcare professionals must keep in mind at all times that they are in this field to help others. What they do in the course of any given day should not be about their own needs and biases, but should be undertaken for the sole benefit of the patient. Sometimes that means being willing to put your own opinions aside and giving the patient the means to reach further without impedence.
The practice of medicine should be a selfless act, not one whose primary motivation is to save face. In this day and age physicians are not expected to know everything, (and get a clue guys, the cat’s out of the bag! Patients are well aware that there is no way that a doctor seeing patients all day long back to back has the time to read up on all the latest research. Many patients now know how to read medical journal articles and have to become experts in their own conditions in order to ensure they get the best treatment available, so it’s high time that was acknowledged.
And medical professionals, The crackpot defense no longer holds water anymore. Instead of shutting patients out and shutting them down when they engage you in discussion about a certain treatment, or diagnostic possibility, instead of writing backhanded and snarky comments in a chart, why not treat them like the respected partner that they are and approach this undertaking as a challenge to be solved rather than a threat to your authority.
It’s not personal. It’s not about you. It’s about their best health, and their life.
It’s been 2 years now since that fateful day I entered the ER of Emory Healthcare. Back then almost nobody else was speaking out publicly in blogs and/or video and although it was common knowledge within the chronic illness community that these kind of things happens, mostly it was only discussed in groups and on forums with little exposure to the open internet. Search yielded almost no trace of the undercurrent that was about to explode onto the scene as patients quietly compared notes. It seemed each patient this happened to was contained in their own little bubble of isolation and only 1 organization existed at that time to advocate on behalf of patients whom medical corporations targetted.
The mainstream media didn’t mention the thousands of cases that were routinely brushed under the rug and when approached tiptoed around the issue as though their bread was buttered on the wrong side of the law, so they dared not speak of it. That 1 organization that existed at that time was overrun with requests for help, not only from US citizens but from patients all over the world and its director was in the process of putting it on hold until she could complete a book on the subject.
Nobody else was really organizing around this insidious but deadly problem inextricably woven into the very fabric of our society, so it became my mission to get the ball rolling and start a concerted effort to change the law.
For those of you just now subscribing to my blog and/or coming across it for the first time, a short re-cap. I began having new symptoms outside of my already diagnosed chronic illnesses that progressed very quickly over the period of about 1 year in 2014-2015. They became so severe that I ended up hospitalized for 11 days because of severe near syncopal episodes, blood pressure wildly erratic, insatiable thirst and the taste of salt in my mouth, lower GI spasticity, severe myoclonus, other abberant movements, weakness, spasticity, and difficulty walking.
While in that particular hospital I was treated for Dysautonomia (a dysregulated autonomic nervous system) a condition which likely may have been causing some or even all of those symptoms. One of the doctors there sat down at my bedside one day during rounds and talked with me about my dysregulated blood pressure and the other symptoms I was having and about treating it with IV saline. I had no idea at the time that that was an accepted treatment for dysautonomia. I had not yet read about it, but he explained that he had tried this for a few days when I first came in to test out if it would get the symptoms under control and found that I started to stabilize.
He went on to say that there weren’t alot of options to treat this autonomic dysfunction but that he’d noticed when he took me off the saline that my symptoms got worse, so he would like to put me on it continuously to see if I would stabilize again. I did notice that I had started feeling better for a few days but had no idea why. When he explained this to me it made sense and so I agreed to it.
I was grateful to have something that worked. He put me back on it and wrote the order for it to be continuous, and sure enough, after about 4 more days I again began to stabilize. I was able to eat again, the thirst subsided, I was able to go to the bathroom more regularly, and the near syncope and dysregulated blood pressure became more stable again. I figured if that’s what it took to keep me stable, then so be it.
What I didn’t know is that this doctor failed to document what he’d said to me verbally and although he documented the order for continuous IV saline infusion, he did not state the reason nor the detailed rationale that he’d given me that he had tried this (what they call in medicine a “therapeutic probe”, something doctors sometimes do as a clinical diagnostic tool in which a positive response to a given treatment indicates that their diagnostic hypothesis was correct).
At the time my muscular symptoms were presenting like ALS so the admitting neurologist (another doctor) began the process of looking into that as a possible diagnosis. By the time I was discharged they were still unable to diagnose what was wrong but the admitting neurologisy suggested I go to some major medical center such as Mayo Clinic’s movement disorder clinic, since the system where I had been going for healthcare previously had not been aggressively routing me to appropriate referrals and I was rapidly becoming more and more disabled.
She told me that their facility (a smaller system than where I was getting all my outpatient care) was not advanced enough to do the more involved testing that would be needed to find out exactly what was wrong. I was discharged on a Saturday, the saline order was not written for home health as I was told it would be by one of the attendings, and just a few days later I ended up back in the same shape as when I went in. I awoke one morning feeling intensely faint even lying flat on my back, and no matter how long I waited for it to pass it would not.
I ended up back in the ER, this time at the hospital where all of my outpatient doctors worked, but instead of stepping up and expediting my care the facility (unbenownst to me) began building a malicious case to discredit me in my medical records to cover up the mismanagement of my condition(s) now that they were aware of my rapidly declining condition.
During that ER visit I suffered numerous human rights violations and nearing the end of my visit was physically assaulted and interrogated by an on-call neurologist who posited that there was nothing neurologically wrong (because I had not yet been given a diagnosis while I had been hospitalized at the other hospital, taking bits and pieces of the incomplete record from there out of context).
Soon it became clear that he’d been called in by administration to shake me down and to try to debunk me, not only the new illness(s) yet undiagnosed, but he pointedly questioned even my established diagnoses.
This was no legitimate neuro exam and as it progressed from undue roughness to an outright beating I was 100% sure that this was outside the standard of care and that he had not come to help me, but to maliciously sabotage me. In his mind I was wasting people’s time and resources and he was bound and determined to make me pay.
After he left the room he had his resident come in alone and slam her butt down on my foot (this is a very unethical practice that is done to find out whether a patient is faking). Not only was it reckless but misplaced given that although I was weak, I had never claimed to be paralyzed nor unable to feel, so it did hurt.
To make a long story as short as I can; the sadistic neurologist who’d abused me put libelous statements into my medical records and incited his resident and others to do the same, it got passed on from doctor to doctor, ruined the good working relationship I had with two other doctors I’d seen for years.
The corporation that employed these people refused to do anything to correct the records, discipline those who acted improperly, nor to protect me and my record as I had requested from any further damage.
My case became highly political and administration itself went after me using numerous people who worked for them to carry out their corrupt agenda. I was mercilessly harrassed by letter and even got a threatening phone call, my care suffered more and more because of the firestorm of loose gossip flying around the facility about me, administration admitted they’d been reading this blog and when I wouldn’t take all this lying down they got their Chief Medical Officer to send me a letter kicking me out. (Note that this is the largest and most powerful healthcare system in Georgia).
The libel in my medical records continues to hurt my ability to obtain unbiased medical care long after I’m gone from their clinics, and thus my health continues to decline.
I’d filed all pertinent grievance procedures and went through every proper channel, but to no avail. This corrupt facility got off at every turn.
Why? Well here’s the answer in a nutshell;
1) Regulators base their investigation solely on what’s written in the record regardless of whether it’s accurate, inaccurate, or blatant lies!
2) Apparently the law has a loophole in it which says basically that a doctor or facility can get away with libel in a patient’s medical record as long as the facility’s administration answers the complaint by stating that they “find the record as written to be true and correct.” They aren’t even required to have personal knowledge of the validity or invalidity of the defamatory statements in question. They can merely say it’s true with no proof whatsoever.
The above clause in currently law directly conflicts with federal anti-discrimination laws and I argue is therefore unconstitutional. Constitutional law was supposed to override administrative policy, but it was not enforced.
In addition; the facility receives federal funding and therefore cannot legally retaliate against by refusing service to a patient for making an official grievance, yet that is exactly what they did to me.
These two key points are what regulatory agencies ignored, so it became clear to me that the law must be made much clearer than it currently is worded, and that this particular type of abuse; gaslighting and blacklisting of patients must be given it’s own designation as an unequivocal hate crime.
I have set about deeply researching this topic to find out just how common this is and a petition was written with my story and my proposed legislation which would fill the current loopholes, and now over the past few years patients who have been abused in these ways are coming out in droves!
To read, sign, and add your story to our petition please click here. Your signature and story will be auto-forwared to Secretary Sylvia Burwell of Health and Human Services Committee (US Congress). Please be as specific as you can describing exactly what happened to you, state when it happened approximately (don’t just say something vague such as “This happened to me too” or “I have been abused by doctors” or “I have been blacklisted”, tell what was said, direct quotes if possible, and what was done if there was abuse and/or medical neglect. This way statistics can be compiled about specific types of human rights violations. We need to band together as a community and continue to hold those in positions of power accountable, to insist that state and federal regulators regulate, and that these inhumane and destructive practices are brought to an end.
This is my Christmas wish; not only for myself, but for all patients that similar atrocites have happened to, and those who may become victims of this type of abuse in the future. We must change and strengthen our civil rights laws!
I’ll be participating in #Blogmas this year. Over the next few weeks I will feature 1 patient’s horrendous story on this blog every week to raise awareness of these abusive practices in medicine.
Please share and leave a comment here on each corresponding blog entry so that we can continue to raise awareness and push our public officials/legislators to enact concrete solutions now! I hope to live to see the day when not one more patient is gaslighted, blacklisted, bullied, discriminated against nor abused by the medical establishment.
What better gift is there than to make it possible for patients to obtain the respectful and compassionate care they need for their medical conditions without fear, and to give them back their dignity.
This is my Christmas wish!
The phone rang this evening waking me from a sound sleep. It was a friend from one of my chronic illness groups on the other end. “You’ve got to hear this!”, a sense of urgency in her voice on the other end. “I thought you would want to know that Emory has done it again. This time they’re denying a 2 year old boy a kidney transplant!” She related to me the story of a family who was being blatantly discriminated against simply because the boy’s father, Anthony Dickerson, the potential donar and a match, had been jailed for a parole violation.
Initially it appeared that they were willing to work with the family and that the only stipulation holding up the life-saving surgery was that the child’s father needed to come in to have some preliminary pre-op bloodwork done on September 29th, but as the man was still in jail and could not be released by the date Emory had requested he come in, by the time he was released it seemed suddenly all bets were off.
What had started out as a relatively simple hurdle to overcome now became a growing list of demands and scrutiny made by the Emory Living Donor Transplant team; now requiring Mr. Dickerson to supply evidence of compliance with his parole officer for 3 months before his son would be considered again. The the only option now given the family was the regular transplant list. We all know that many have died without expedited transplant offered by such hospital teams, and for a young child who was born premature with malfunctioning kidneys such a wait could very likely result in his early death.
Although none of us witnessed what went on in that meeting behind closed doors, it is more likely that Emory’s top officials such as its Chief Medical Officer, whose letter to me denying me care at a crucial time; copy uploaded in a previous post, were the real ones behind these new obstacles placed in the family’s path. Emory keeps its doctors on a short leash, especially where it concerns delicate matters that might garner bad publicity for the biggest healthcare system in Georgia. There is little doubt that risk management and their legal department were consulted regarding the ramifications this situation might have for Emory, possible liability and/or possible negative impact on its public image. For all the cases that go public there are probably many more that are routinely brushed under the rug, patients too exhausted and demoralized to fight for their rights.
One might ask “Can’t they just go to another hospital for the transplant”? but in this state it’s not as simple as one would assume. Patients that are outcast from Emory’s system find themselves in an ongoing awkward situation in approaching other local doctors and hospitals for the care they need, as although there are facilities not directly owned or affiliated with Emory, there is almost always a soft connection somewhere; either that doctor or hospital utilizes Emory’s medical equipment, labs, certain clinics, or they have a “one-hand-washes-the-other” working relationship in which they give mutual referrals. This is even true with their direct competitors to some extent. Therefore this child’s father would likely face the same scrutiny at these other local facilities as at Emory, and there is no telling what has been written in the records regarding the boy’s father’s criminal record and the requirements placed on him for his son to receive the transplant any time in the future. De’Aja Asbury has created an online petition similar to the one that was created for me. The petition can be accessed at https://www.change.org/p/emory-hospital-approve-life-saving-kidney-transplant-for-2-year-old-boy-before-it-s-too-late
A local news team has covered the story. See this footage below;
At this point the family’s best chance for this child’s survival is to try to get a compassionate release for the child’s father so that they can go to an impartial hospital for the transplant, as soon as possible. They will most likely have to approach officials on the federal level in order to have a fair chance of having their request accepted. Godspeed to this child in getting the surgery he needs.
All too often the mistreatment of patients with disabilities/medical conditions/chronic illness is regarded by society as a lesser offense (or not an offense at all) and its survivors’ resulting trauma not acknowledged by the general public, including those agencies whose … Continue reading
I’ve been so busy working on the out-of-state referrals to upper level clinics and just living my life to notice why I’d been crying more lately and thinking more about the incident at the ER on December 3, 2015 and … Continue reading
It was no big surprise when I received the long, white envelope with the Georgia Composite Medical Board logo on it that the outcome was a bust. Georgia’s track record for disciplining doctors for infractions is especially bad compared to … Continue reading
Attribution given; <a href=”http://www.freepik.com/free-photos-vectors/background”>Background vector designed by Olga_spb – Freepik.com</a>
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.
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.
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)
And now for a good protest song;
This Land Is Our Land