Medical incompetence wins again

November 16, 2007

I called my case analyst this afternoon at the Minnesota Board of Medical Practice regarding the medical complaint against my former rheumatologists. Bad news – the case was closed because the board thought there wasn’t enough evidence to justify disciplinary action. This is very disappointing, yet I’m not really surprised. Doctors are so well-protected and even untouchable, it seems. The arrogance, apathy, negligence, and complete disrespect of my doctors put me through months, years even, of hell. In a just world something should have been done to try to remedy this situation. But no. They get off without so much as a slap on the wrist and are free to treat other patients like dirt. Below is the full and actual complaint I submitted as a result of the most recent mistreatment by my doctors. Thanks to them, I was basically left stranded in France last winter unable to get crucial medication and medical help while abroad.

STATEMENT OF COMPLAINT

I feel I was unjustly and unethically treated as a patient by Dr. H_____ and Dr. G____ and the group Arthritis ___________ regarding three issues: 1. I was unfairly discharged as a patient, 2. I was refused assistance getting an important and needed medication before I left the United States to live and work abroad, 3. Since June 2005 I received improper care regarding a serious and very painful chronic issue with both of my ankles, from unnecessary treatments to wrong diagnoses.

Unfair Patient Discharge

I received a letter from Arthritis _________ written by S______, Administrator, dated Wednesday, December 27, 2006 stating that my doctors and the group decided they found it necessary to discharge me as a patient (see attached letter). The letter arrived at my house Friday, December 29, 2006. My parents, L____ and R____ L_____, opened the letter for me because I had left for Europe very early the morning of Thursday, December 28, 2006 and did not receive the letter before I departed. My physicians and others at Arthritis _________ knew that I was leaving the country the morning of December 28, 2006 and that the letter would not reach me in time. My parents and I were all in complete shock after reading and hearing this news and had no idea why I had been dropped as a patient and in this manner. The letter from S_____ [Administrator] does not state a reason for discharging me. It does state,

We will continue to provide medical care on an emergency basis
only until January 26, 2007. We feel it is in your best interest
to obtain follow up care with your primary physician. Your
primary care physician can recommend another rheumatologist
as needed
( December 27, 2006).

My father first attempted to speak with Ms. S_____regarding this letter on January 5, 2007. He was told that she was not in or was unavailable and he left a message for her. She did not return his call. He attempted to call Ms. S_____ numerous times after the initial call and had great difficulty being able to speak with her. He left multiple messages which she did not return. He also made attempts to call other physicians for assistance. He spoke with my former rheumatologist, Dr. S______ who is also a physician with Arthritis _______ and asked if Dr. S_______ could help me get the care and medications I needed. Dr. S______ was very unhelpful and refused. My father also contacted and spoke with my primary care physician, Dr. C______ at ____ Clinic in R______, Minnesota, on January 5, 2007. She was very understanding, but because she is not a rheumatologist, she was unable to help and prescribe the medication I needed. According to my father, Dr. C______ expressed that Arthritis _________ discharging me as a patient in this manner was inappropriate, and that if she could have helped me, she would have done so.

Ms. S_______ finally returned my father‘s phone calls and informed him that Dr. H_____ and/or Dr. G_______ would not provide any medical care for me while I was in France, which is contrary to what the letter said stating they would provide medical care on an emergency basis. She did not offer any help. She also would not give a reason why I was discharged. The date was well before January 26, 2007 when my father spoke with her. The fact that I was refused any further medical care meant that my doctors would not help me get any of my rheumatoid arthritis medications, including the most important and difficult of my medications to obtain and administer – Humira, which is crucial to my health. Without this drug my health and quality of life usually worsens and deteriorates at a rapid pace. At this point I was left stranded in France with no rheumatologist in Minnesota and not enough Humira or other medications to last for the approximately five months I would be in France and Europe.

After weeks of stressful work and research, I did find access to a doctor in France who could write a prescription for Humira for me, however I was repeatedly told by my insurance company, Health Partners, that they would not cover and pay for this medication unless it was prescribed and filled in the United States. Upon receiving this news, I had only two options: 1. Return to Minnesota and find a new rheumatologist who could prescribe Humira for me, therefore being forced to give up my teaching job in France, 2. Use the French prescription for Humira and pay for the drug out-of-pocket, which would cost approximately $1,500 per month (I could not afford this!). After weeks of trying to figure out what to do about this situation, luckily things worked out, thanks to help from Health Partners. Health Partners made an exception because of my situation and agreed to reimburse me the cost of getting the Humira prescription filled in France. However it was an extremely difficult and long process, and I was nearly forced to either go without my medication or to give up my job and plans in France and return home. It should be noted that Health Partners also tried to contact Arthritis _________, requesting for my doctor to call in a prescription for Humira for me, for which they were also denied. My father called Health Partners January 10, 2007 and filed a complaint against Arthritis __________. The complaint was submitted to Health Partners’ “Quality Measurement and Improvement” January 11, 2007. I do not know the results of that action.

Medication Refusal

I arrived back in Minnesota May 8, 2007 and I recently requested and received copies of all of my medical records from the nearly ten years I’ve been a patient with Arthritis _______. After reading the final record/note dictated by Dr. H_______ on December 30, 2006 regarding my final appointment with her on December 26, 2006, I am upset to see the false allegations against me, with Dr. H_____ declaring me a “difficult patient.” I have no official statement from Dr. H______ or from Arthritis _________, but from my own assumptions I am inferring that perhaps a possible reason I was discharged is because of this accusation that I was a “difficult patient” – which is false.

Regarding this final medical record, dictated by Dr. H_______ on December 30, 2006 at 4:12 P.M.,

Angela is a difficult patient. She does not want to take responsibility
for her disease (having labs in a timely fashion) yet she wants every ache
and pain attended to immediately (see multiple phone calls over the last
4 months). I told she and her father that medications cannot be refilled
until she has blood work. I made it clear for her father that the ACR
recommends blood work every two months to monitor patients on
methotrexate and she is now almost 4 months from her last labs. She
has known this for a month and ignored it. She has also known that she
is going to France since early in the fall and she has really made no attempt
to find a doctor and figure out her coverage. She just assumed that we would
give her what she wanted which was basically enough meds to cover her
entire time away
(H______, December 30, 2006).

The reality of this statement from Dr. H______ is that in fact I was unaware that the ACR recommends blood work every two months. I don’t even know what the ACR is, much less that I’m having blood work based on their recommendations. I was also not made aware that it was necessary to have this blood work done in order to have my prescriptions refilled. It is true that I spoke on the phone more than once with Dr. H_____’s assistant about coming in to have blood work done before I left the country. I did not object to this and I had planned to do it. However she never said it was mandatory or that if I didn’t get this done that I could not receive my medications. I spoke with her only a week before I left and at this time she still did not inform me of this. She very casually suggested that I have it done. Had I known prior to the late afternoon of December 26, 2006 that I couldn’t get my medication without the blood work, of course I would have found a way to come into the office to do this. I did not feel that it was mandatory and unintentionally forgot about it amidst all of the other stressful things I was dealing with at the time. I thought that if I didn’t have time to come into the office, then I would find a way to get the blood work done once I arrived in France.

Fall 2006 was an especially difficult time for me health-wise, mainly due to my rheumatoid arthritis. I had surgery on my right ankle November 7, 2006 and during this time I was trying my best to recover in the hope that I could still go to France to teach English. I had already been forced to alter my plans and delay my job in France due to the surgery (the teaching program was from October 1 – April 30), yet I was still very determined to not give up on this job and experience. My COBRA plan with Health Partners was also coming to an end in December and my parents and I were in a panic, scrambling trying to figure out how to get me insured in time before I left the country. Having surgery (significantly limiting my ability to walk and causing serious pain), figuring out new health insurance, planning to move to France, and trying to work all at the same time were all incredibly stressful things to handle.

During the entire month of December I had problems trying to sort out getting my health care and medication issues taken care of for when I would be living in France. Because I was changing over to a new health insurance plan, I had difficulty reaching and speaking to people at Health Partners about my issues – or even getting correct and accurate information regarding these issues. At the same time I had problems trying to figure out how I was going to get my medications in France. Humira is an injectable drug that needs to be kept at a specific temperature range at all times and is therefore very risky to try to transport anywhere. The safest option would be to bring as much of the drug as possible with me on the plane and to my destination, rather than having my parents try to ship it to me (Health Partners could not assist in sending the drug to me in France, which was another long, drawn-out problem I was trying to work on at this time).

The weeks went by quickly while I was trying to get everything organized. I was in contact with the Arthritis ___________ office and Dr. H______’s assistant numerous times. It should be noted here that Dr. G_____ is “officially” my physician, yet because she does not work full time, Dr. H______ takes over her patients in her absence. As a patient I find this practice to be very inefficient, not to mention confusing in terms of what is being communicated between the doctors and the patient. Anyway, during this time I was once again unable to see Dr. G_______, and instead had to deal with Dr. H______ and her assistant. What eventually happened is that I needed Dr. H_______ to call in a new prescription for Humira so that I could have extra doses to bring with me when I left for Europe. The insurance company could not authorize this themselves and I needed the help of a physician. I requested this of Dr. H________ and left multiple messages for her with her assistant. My phone calls were not returned until the very end of the day on December 26, 2006. I stated many times that it was urgent, because it was the last day a new prescription could be called in to ensure that the medication would be delivered to me in time before I left the country. I also do realize that this was very last-minute of me, however in my defense, I also did not know until the last minute that I needed this physician authorization and what the status of my refills were with Health Partners and my pharmaceutical company, CuraScript.

One of the last times I called the Arthritis __________ office regarding this matter was on the morning of December 26, 2006. I left an urgent message for [Dr. H______’s assistant], explaining my situation to the receptionist. I waited for hours and received no return call. I believe I called at least two more times and still received no return call. [The assistant] finally returned my phone call late in the afternoon and proceeded to treat me in a very unprofessional, condescending and insulting manner. She stated that Dr. H______ would not call in a new prescription because I didn’t have the blood work done. I explained the situation and she grew even more disrespectful, reprimanding me as though I were a stupid, spoiled child who only wanted her own way, which was untrue and upset me, naturally. In tears and humiliated, I exclaimed and asked, “Why won’t you help me?” I explained the situation again and stressed that I wasn’t refusing to go against their treatment. She hung up on me. I waited until my father got home from work and then the two of us went to the office to try to meet and speak with the doctor, hoping she could help me with my medication. We did meet with her and I was again treated in a very condescending and arrogant manner and reprimanded like a child. I got my blood work done, which as I already stated, I had no objection to doing in the first place. However by this time it was too late to get the Humira prescription called in, and we left, insulted and not helped. Three days later my parents received the letter addressed to me stating that Dr. G______ and Dr. H______ and Arthritis __________ were discharging me as a patient.

Poor Care

As quoted earlier, Dr. H______ describes in my chart how I am a “difficult patient” with this statement:

She does not want to take responsibility for her disease (having labs
in a timely fashion) yet she wants every ache and pain attended to
immediately (see multiple phone calls over the last 4 months)

(H______, December 30, 2006).

I feel strongly that I must comment on this because: 1. It’s incredibly insensitive toward myself as a person and patient, 2. It implies that my “multiple phone calls” were excessive and unimportant, which is quite the opposite, and in fact were related to a serious long-term arthritis issue that I feel has been dealt with improperly by my physicians at Arthritis ___________(see attached document).

Referring to my “aches and pains” in the manner of this quote snidely implies that my physical pain is insignificant and that I’m an unreasonable patient, overreacting and causing Dr. H________ an inconvenience by calling the office for help. As a rheumatologist she should realize and understand what a serious and painful disease rheumatoid arthritis is and how strongly it can affect and hurt the lives of the patients who suffer from it. I deal with a very high level of pain on a daily basis and for nearly ten years I have not called in “bugging” my doctors over “every ache and pain,” demanding that they be attended to immediately. I have quietly suffered and endured a lot of pain all of these years and I find it completely unprofessional for a physician, and especially a physician in this field, to make such statements about her own patient — someone she should be helping and supporting instead of causing additional distress and pain.

In response to the “multiple phone calls” comment, many phone calls were indeed made by myself during those last four months mentioned and even longer ago than that. The reasons were not simply due to “every ache and pain,” but because of a very painful and difficult arthritis problem going on with both of my ankles since April 2005.

Since April 2005 both of my ankles have been inflamed and in serious pain that has never once gone away. My quality of life has diminished significantly, rendering me unable to walk, stand, and function like a normal, healthy person. The pain and swelling began at the end of April 2005 while I was on vacation. I returned home at the end of May and immediately called Dr. S______ at Arthritis _________ in the hope of getting help for my ankles. An injection and MRI scans were done, which did not show much of anything, which was puzzling and frustrating. After these results, Dr. S______ basically dismissed the problem saying there was nothing he could do and left me to try to get help elsewhere. Weeks had passed and I still had very bad pain in both of my ankles. Dr. S_____’s apathetic attitude left me feeling disappointed and alone, and it also bothered me that I had to “pester” him just to give me the name of an orthopedic doctor I could try to see.

Since June 2005, I have seen so many different doctors and specialists, such as podiatrists and many orthopedic doctors, including a rheumatologist and sports medicine physician at the Mayo Clinic in Rochester, Minnesota. I also endured months of physical therapy that were not necessary, not to mention the wasteful and large amounts of money I paid for all of these office visits, therapy appointments and MRI and X-ray scans.

Around August, I believe, I wound up changing to a different doctor within the Arthritis ______ group — from Dr. S_____ to Dr. G______. My reason for changing doctors is that I was frustrated with Dr. S_____’s seemingly lack of care and interest. I also felt he was quite rude and condescending toward me the very few times I ever asked him questions. If I had questions or concerns about my own body and health, I did not feel comfortable asking him. I felt he had no interest in working together with me to help solve the problem with my ankles.

Dr. G______, like Dr. S______, was also impatient and apathetic in regard to the problem with my ankles which I had been suffering with for over a year at this point. Dr. G______ repeatedly told me that nothing was wrong with my ankles, that it wasn’t the arthritis and that arthritis damage was not going to occur. She had me go to physical therapy for a second time, and I went to see more orthopedic doctors. After weeks of leg exercises, foot exercises, and ankle taping, it was clear to me that my ankles were not getting better. My worst fear was that it was the arthritis, and I wanted to believe Dr. G______ that it wasn’t arthritis, but my deepest gut instinct told me that it had to be arthritis or arthritis-related. I was really frustrated that my doctors would not believe or listen to me.

At this point I was feeling very stressed out and afraid because the pain itself was difficult to deal with, and I was growing more and more worried about if it was actually arthritis and about possible permanent damage (I suffered permanent damage to my right wrist in 1999 after waiting too long to have surgery on it, due to Dr. S______’s unwillingness). After months of going to doctors and therapy I never should have gone to, and after practically begging to get the name of an orthopedic surgeon who could perform a scope on my ankle (Dr. G______ and Dr. H______ discouraged me from having surgery), I was put in touch with Dr. J. C_______, who specializes in feet and ankles. At this time I was also stressed trying to get this sorted out in time before I was supposed to leave for France in October. As one can see, Dr. H______’s statements in my chart from December 26, 2006 (as I previously stated in this statement) asserting that I refused to take responsibility for my disease and had done “nothing” to prepare for France are completely false. I have been working very hard since June 2005 to take care of my health and arthritis, and without adequate help from my rheumatologists.

In September 2006 I finally got Dr. J. C______’s information, but Dr. H______ refused to call Dr. J. C_______ to try to get me in for an appointment sooner, rather than having me wait months because I was a new patient. I was very surprised and upset by her refusal to help me, especially when she knew that I had hoped to leave for France soon, and after all of the months I had been dealing with this problem regarding going to wrong doctors, wrong treatment, etc. Luckily Dr. J. C_______ is a very understanding and kind person, and he agreed to see me right away after I personally called and explained my situation. Based on my MRI scans and his physical examinations, he believed that my ankle problems were indeed from the rheumatoid arthritis. Everything I described concerning my symptoms matched with what he said. We scheduled a scope for my right ankle on November 7, 2006.

Contrary to Dr. S______, Dr. G_______, and Dr. H______’s assertions that my ankle problems were not caused by arthritis, Dr. J. C_______ found a lot of inflammation and damaged synovial tissue in my right ankle that had been building up for over a year and a half, which he removed.

In conclusion, Dr. S______, Dr. G______, Dr. H______ and administrator S_____ and the group of Arthritis __________ behaved unethically in their treatment of me as a patient with regard to unfairly dismissing me as a patient from the practice with no prior notice, in the poor medical treatment I received by them, and most recently the false statements regarding my character and branding me a “difficult patient.” I wholeheartedly believe I have been wronged as a patient by my physicians and Arthritis _________.

5 Responses to “Medical incompetence wins again”

  1. peter Says:

    Thanks for writing so thoroughly about your experience.

    I have similar experiences all the time, and so do millions of other people. Most people just accept it and assume they are idiots and destined to suffer.

    The problem is not medical incompetence. It is not even medical indifference. What it is is medical narcissism. Basically, doctors and staffs are so involved in gratifying their own needs, whether it be getting really rich, or avoiding having to work hard or carefully, or being accountable for their errors, that they do not have the psychological equipment to care about their patients. They just have lip service mottos like “patients come first”. These are of course just PR lies.

    Think about it: tens if not hundreds of thousands of people die each year in hospitals because of medical error. Tens if not hundreds of thousands of people get infections in hospitals because doctors, nurses, and aides don’t want to be bothered to wash their hands.

    Doctors and hospitals actually get paid more if they screw up, because then they get to do even more work on you to fix their screwups.

    But, it’s all just business. If you start being more trouble than you are worth in the amount of business you are providing, then they will drop you like a hot potato. Or, if they decide they don’t like you, for whatever reason. Like, for example, you didn’t have infinite patience with some passive-aggressive moron who answers the phone in their office. Or if you didn’t agree to go quietly in pain and wait a month for them to get around to you.

    This is all par for the course. You are not alone. God only knows how we fix this at this point, since the whole system is rotten. But, by writing this blog, you are doing us all a great service.

    (No, I don’t have RA.)

    –peter

  2. Elena Says:

    Thanks for this article. I have RA too and very so unhappy with my rheumatologist. We have this lifelong disease and it is unfortunate that we have to see a rheumatologists for life. So it is important that we find a good one. I wrote some articles on my blog about it also:

    http://likeliliesofthefield.blogspot.com/2008/05/good-rheumatologist-hunting.html

    http://likeliliesofthefield.blogspot.com/2008/05/chill-pill.html

  3. Ailyana Says:

    Hello,

    I read your story randomly while looking at ways to receive methotrexate for my sister right now that we are studying abroad in France. It really touched me. You had it very tough during the time this all happened. I really do not want my sister to have to return to the states for the medication. loosing her educational opportunity of studying in France. Those are the plans of this moment, looking for an affordable way to receive her medications. Only God knows how we will do that. Thank you for sharing your story.

  4. andy Says:

    despite all this, you might look in to low dose natrexone,

  5. Natalie Says:

    Your experience must have been so very frustrating!

    The first specialist I visited appeared rushed & angry & told me to come back when my hands appeared deformed, end of 30 second visit. (Very glad it wasn’t cancer of the breast I was seeing this specialist for – would hate to go back after waiting for my breast to deform.) I made the appointment hoping we could discuss this DX of RA, talk about a plan of care with options for TX that might prevent any deformities. I guess there is some wisdom to the suggestion that individuals interview prospective physicians before choosing one to work with.


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