Monday, March 07, 2011

In Pain? Too Bad! Part One

I've had some problems lately at my clinic. This, as you will read, may be the understatement of the century.

Now faithful readers of ZPT will note that I've had problems there before, particularly where prescription refills are concerned. Lately, however, that issue had seemed a thing of the past: the Rx Dick was taken off of refill duty and the new procedure (calling the receptionist and making the request through her) has thus far worked pretty well. I personally had preferred Dr. Fetus' method of simply seeing me every 3 months and writing out 3 months' worth of prescriptions at that time, but I understood why Dr. Forthright (Dr. Fetus' replacement) wasn't comfortable with that and honored her wishes.

And then Dr. Forthright finished her fellowship and moved on.

When I got the letter announcing her departure, I was disappointed. I had, over the years, built up a great doctor/patient relationship with Dr. Fetus, and considered myself fortunate to have found a like-minded physician in Dr. Forthright. For me, it's essential that I trust my doctor, and my doctor trusts me...that we can both speak freely and air concerns without fear of censure. I am not one of those people who likes a doctor who "pussy-foots around," as we say in the South: I want to be told directly, honestly and then get on with it. Having had success with three doctors in a row (The Well-Accessoried Doctor, Dr. Fetus & Dr. Forthright), I had high hopes that the new physician would be in the same vein.

Little did I know the awful sequence of events that would be unleashed as a result of Dr. Forthright's departure.

Below is a letter I've written to Patient Relations and the clinic, and it explains it all:


PLEASE PLACE THIS LETTER IN MY MEDICAL FILE. THANK YOU.

To whom it may concern:

I have been a patient at the clinic for a number of years. During this time, I have had numerous difficulties in obtaining prescription refills (both for narcotic and non-narcotic medicines). I entered into a pain management contract, but the problems did persist. Most of these ongoing issues, however, were resolved some months ago when the clinic re-vamped its prescription refill process. I had been happy overall with the new clinic procedures, but unfortunately these procedures failed me in the months of February and March 2011.

I have secondary-progressive multiple sclerosis and MS-related trigeminal neuralgia. It took some time before a suitable medicine regimen was found to adequetly treat my severe chronic pain. Before that regimen was found, I was frequently forced to go to the ER for pain in addition to numerous office visits. Eventually, the combination of medications that I am currently taking was prescribed. That was four years ago, and in that time I have not once been to the ER for TN pain, nor have I exceeded my monthly medication allowance. I have been randomly drug screened during this time and never failed. I have upheld my pain management contract to the best of my ability. I even sent my former doctor, Dr. Fetus, a thank-you card every January in appreciation for the regimen that has made my life bearable again.

A few months ago, my doctor finished her fellowship and I was switched to an NP. I requested, both by telephone and in person at the office, to be switched to an MD and assumed that had been done. When I called to get my prescriptions refilled in February, I was told I could not have them until I was seen and that I could not be seen until the 10th. I was also told I was still on the NPs rotation, but that I could fill out a form to request a change (this was the first time I had been told about this form).

As a result, I went several days without my medication. The medication takes some time to build a "level" in your bloodstream; because I didn't have my medication on time, the entire month I dealth with much more pain than I am accustomed to dealing with. I am permitted to take my oxycodone every 6 hours and at times I unfortunately had to do so. This has led to side-effects that are most unpleasant, and to my running out of medication prior to March 10th.

While at the clinic on 2/10, I was randomly drug-screened, which I passed. I then asked again to be switched to an MD. I filled out the form, and the NP made a note in my chart as well. I was given my prescriptions, and at no time did anyone inform me that I would need to make an appointment for March or I would once again be denied medication. Had I known this, I would have made said appointment while I was in the office and the following situation would not have occured.

On March 1st, I contacted the office to request my 3 hard-copy prescriptions as I do on or around the first of every month. I was told for the second month in a row that I could not have my medications unless I came in to be seen. I assumed the note had been left in the computer from the month before, and told the receptionist I had just been seen 2 1/2 weeks prior to the call. I was told it did not matter, I had to be seen again. I explained the situation I was in, with higher levels of pain because of the delay the month before and that further delay this month would only lead to more pain and even possibly hospitalization. I was told I could be seen on the 8th, but that was all they could do. I was then asked if I wanted to discuss the matter with the office manager, and I agreed.

I spoke at length with Office Manager "Norene," who was both cordial and helpful. She agreed that my current situation with the medication was due to the clinic's mistakes, and assured me they wanted to do everything possible to "keep me out of pain." She told me more than once, "We certaintly don't want you to be in pain." She suggested I come into the office to "brainstorm ideas" to "help me get over the hump" until I could be seen on the 8th. I argued that the only thing that could be done was to give me medication or a shot, and I did not want a shot. She insisted again that I should be seen. I told Norene I felt I could make it another day or two, and then revisit the matter at that time. She pointed out that another day or two would be the weekend, and my contract disallowed medication requests on the weekend. I would be better off, she said, if I came in to see the NP at 7PM that evening. I was still hesitant, but after considering it for a few minutes, I agreed and the appointment was set.

After my conversation with Norene, I was under the impression that my appointment was set for the sole purpose of finding a way to help me manage my pain until my appointment with my new MD on the 8th. However, when I arrived at the appointment, I discovered that the NP did not believe this to be the case.

When I arrived, the first thing I noticed was the cup for a urine sample. I was taken aback; I just took a random drug screening the month before and as I said above, I have never failed a urine screening. I felt insulted, so I asked the nurse to allow me to speak with the NP before taking it. I wanted to know why I was being asked to take the test.

When the NP entered the room, she immediately told me that she "didn't know why I'd come in." I was surprised, and told her about the medication mishap of the past two months. She was aware of this, and told me there was nothing she "could or would do" about it, and couldn't fathom why I had made the appointment. I told her I had not wanted to come in that evening, but had been persuaded to do so by Norene and repeated to the NP Norene's assurances that we could "brainstorm" a way to "help me over the hump." The NP told me that she had no such intention, and that she was under the impression that I had "insisted upon coming in" for the appointment. I asked if Norene was still in the office so we could resolve this obvious miscommunication, but was told she had already gone home.

At this time I was told I had violated my pain management contract by using all my medication before the date of refill. When I tried to explain what had happened and why I was put in the position of needing more medication than is my usual wont, I was told it didn't matter: I was wrong, I was in violation, and there was no way I was getting any medication or help from her. She asked me what I had "expected" out of this appointment. I became upset and told her that I had obviously been misinformed, as I was talked into coming in to see her under the impression that she would at least have some ideas on how to help me. I pointed out that I was in this position not of my own accord, but because of mistakes and miscommunications by the clinic. I invited her to check my records to see that I had not violated my contract in the many years I'd been there, nor had I been to the ER for TN pain in four years. I had recently been seen and both took and passed a urine test, and had not been in to the office for a shot in nearly a year. There was no evidence that I was drug-seeking, so why was I being treated as if I were?

The NP's attitude became more and more combative. She inquired as to how issues of the pain being out of control had been handled in the past. I told her that years ago, I would go to the ER, but had not done so in four years. I had, however, come into the clinic for a shot twice during that period. She asked what I meant by the word "shot," and did I mean the drug Toradol? I told her that such NSAIDs had stopped working for me years ago and generally were ineffective against trigeminal neuralgia in any case. The shots I had received in the office in the past were either demerol or morphine. She then told me "they don't carry those anymore" and had not done so for months. I pointed out that such shots were covered under my contract, and why had no one told me that part of my "safety net" was now gone? I then asked what I was to do if the pain got out of control, did I have any options other than the ER? The NP then told me I could not go to the ER, either! I was amazed. I informed her that I had an ER addendum to my pain contract and it was my understanding that I was absolutely allowed to go the ER if needed. I was then told I could go, but they (the ER) would have to call the office and they'd be told not to treat me!

I was repeatedly told that this was all my fault, that I had run out of pills and violated my contract, and that I had put MYSELF in the situation I was in now. I asked her to explain, and she said, "If you have to take pills every 6 hours one day, then you have to know you can only take one or two the next day, or none." I asked her if she had any idea what chronic pain was like; it simply does not work like that. She said it had to work like that, if I intended to follow my pain contract. I asked her if I was permitted, as the label says, to take the pills every 6 hours if needed. She agreed that I could, but that if I did so I would run out of pills and "face the consequences of violating the pain contract."

I then remarked that I should probably leave, as she had made her intentions to not treat me quite clear and was making me uncomfortable. She then told me I could not leave without taking the urine test. I asked her why it was necessary and she said, "Because I said so." I asked again, and was told, "Because I said so, because I want you to." I rephrased, asking for the medical reason behind the test. She repeated again, "Because I want you to," and then let me know that I had every right to refuse, but if I did, not only would I not get medicine that day, I wouldn't get it on the 8th, either! I felt threatened and coerced, and I told her so. She again told me I was in violation of my contract and this situation was my fault entirely, and the need for this test was also my fault entirely.

I told her I would take the test and pass it as I always do, but that I felt coerced and insulted. It was beyond my understanding why I was being treated in this matter, and being required to take a drug screening while at the same time having treatment for my pain withheld. I told her that I often wished medical personnel could spend a week in my shoes, that they'd be better for it. She asked what I meant, and I told her I felt I was being treated unfairly, as if I were a criminal or a junkie. She insisted she was not doing so, and I told her she did not know how it feels and to not diminish my pain. But the fact is, everyone "ends up on my side of the bed sooner or later," and how would she feel if when that time comes, she is not believed or told to take a urine test first while she agonized in pain? She told me again that I could refuse the test, but the clinic would then refuse to give me any medications; the choice was mine. She told me she couldn't understand why I was "choosing to be offended" by the test, when they were permitted to drug test me randomly by the pain contract. I told her that coming so soon after the last test, and only because I came in looking for help and being told none was forthcoming, it felt both insulting and accusatory. I told her I was amazed that mistakes on the part of the clinic had put me in such a position, and that same clinic was refusing to help me and blaming me for it, not to mention threatening me with further refusal of treatment.

I related an incident that had occured in March 2010: I had an appointment set up and could not get my refills without it; unfortunately, my father died unexpectedly (I have the death certificate, if necessary). I called the clinic begging for an earlier appointment or for them to simply write the prescriptions this time and allow me to be seen when I returned. I was refused, told nothing could be done. I had to wait until 3:45 the next afternoon to have my appointment, then have my prescriptions refilled before I could begin the 3-day trip to arrange my father's funeral. I had believed this was the worst treatment I had ever gotten at the clinic, but at least in that incident I had been apologized to and not told that I myself was to blame!

I could see that attempting to continue talking with the NP was useless; she had no interest in "brainstorming ideas" to help me, and certaintly was not at all concerned that I was and would continue to be in pain. I told her I was taking the test, and was told to give the sample to the nurse and await the results.

In tears, I went down to the bathroom and took the test. I also took a moment to compose myself. I felt let down and insulted by my medical providers, abandoned and humiliated through no cause of my own, and then blamed entirely for it. I had days of suffering to look forward to, and every means my pain contract gave me as a safety net had been taken away from me. I resented the fact that I was being held to every word of the contract, while the clinic felt no need to uphold their end. And charging me for the pleasure!

On the way back to the room, I met the nurse at the computer station and she took the sample from me. I then returned to the room and contacted my husband to come and pick me up. I was crying, and he did become understandably upset. I waited for 20 minutes before my husband arrived, and then waited 10-15 more minutes before the nurse poked her head in the room and asked why I was still there. Again, I was taken aback. I told her I was under the impression I was supposed to wait for the results. She told me my test was "fine" and I could leave now, as the clinic was closing.

It is hard to describe how I felt at this time. I am not ashamed to admit I cried, which only made my pain worse. In all the years I have gone to this clinic, I have never been treated in such a way, nor do I believe I have done anything to deserve being treated that way.

On the following morning, I again spoke with Norene. I was then told that the NP had considered me "aggressive" and that I had talked about death! I was shocked. I explained my comment earlier, and it seemed that perhaps Norene had been told something different, I am not certain. I was also told that my husband was "acting aggressive." I said yes, he was upset at how I had been treated, but the security gaurd was in the corridor when my husband was there and never once approached us, so I find the charge of being aggressive a diversion from the actual issues at hand.

I asked Norene if what I had been told about the ER was true, and she did not know. She told me that I could feel free to call the doctor on call if needed during the weekend. When I asked if there was a note or order prohibiting my treatment at a hospital, she did not have that information. I let her know I had no intention of visiting the ER (and in fact did not go), but I was distressed at having the measures that constituted my safety net taken from me without due notice or cause. I felt I was being told by the clinic that I simply had to suffer with no recourse. Again, she was cordial and attempting to be helpful, but nothing was accomplished.

I then contacted "April" at Patient Relations and told her all that had occured. I was encouraged to document my experience in a letter, which I could mail or email. She assured me she would also contact Norene and try to discern how and why this situation had arisen. I assured her that I had found Norene to be helpful as much as was possible and was grateful for her efforts.

I spent a very unpleasant weekend, simply suffering, as I apparently had no other option. I find this unacceptable, and I am concerned that I am not being given due consideration in my long-standing pain contract with the clinic. I am apparently expected to uphold my part, and threatened with "consequences" if I do not, but apparently cannot count on the clinic to uphold theirs.

I am extraordinarily disillusioned and offended by my treatment. The clinic is keen for me to renew my contract with my new MD, but I cannot help but wonder if I can hope to expect an honest meeting of the minds, or any form of due consideration.

It is my fervent hope that all of this unpleasantness is the result of miscomunnications and minor mistakes that can be easily rectified. I do not wish to believe that the clinic is in the habit of using pain contracts to decieve and coerce pain patients who are, after all, at the mercy of their treating physicians. It is also my fervant hope that my meeting with my new MD on March 8th will be productive and pleasant, and that I will receive both my medications and a reasonable pain management contract at that time.

Thank you for taking the time to read this, and for your efforts on my behalf. I look forward to resolving this issue in a positive manner in the very near future.


Sincerely,

Angel
March 7th, 2011


I did not receive a response to my letter until the second week of June (the letter is dated June 3). Here is the response to my five-page letter detailing my experiences and concerns:


Dear Angel:

Thank you for contacting the Patient Relations Office expressing your concern regarding the clinic. I am sorry for the experiences that were upsetting to you. The appropriate people have been notified and action taken where appropriate.

If you would like further assistance with this, please contact Norene at the clinic.


Sincerely,

Molly


Yes, I got a response three months later....all of four sentences long.

Think things couldn't get worse? So did I.

I was wrong.

Stay tuned for Part Two....

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2 Comments:

At 1:47 AM, Anonymous Anonymous said...

AMEN OMG How i feel your pain. Long Story... you can email me at fever83@ymail.com my name is christina, chronic pain sufferer =(

 
At 10:55 PM, OpenID prisoneroftoday said...

Oh man, what a nightmare! I'm a TN sufferer as well and a possible MS case. When I was diagnosed with TN, I wasn't having attacks so my MD decided to hold off on prescribing tegretol for me (despite that she is a good doctor though, but it will be months before I see her again). I ended up having to beg an extremely judgemental ER doctor for a prescription and convince my PCP to give me a second prescription once the ER one ran out. It's such a horrible feeling being at the mercy of others that do not understand how horrifying the pain is. All the best to you, I hope this mess gets settled soon and your new doctor is reasonable and willing to work with you instead of above you.

 

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