Dr. Pain: A Super Duper Pain in the Toosh (and a side of Spotted Dick Pudding)

Yes, I'm still talking about Dr. Pain. I need to purge the emotions of the last appointment and move on.



Also, as many of you asked or suggested I have reported Dr. Pain. I have never reported a doctor before, but I certainly feel that his behavior and that of the office staff needs to be dealt with. I am using my blogs to send to the Patient Representative at the hospital, so I feel it is important to blog the last appointment I had with him, which I felt was over the top! They all certainly outdid themselves!



A quick catch up first: After speaking with Toni on Monday August 20 she suggested that I call the office again regarding the still unreceived dictation requesting Lyrica.



Tuesday August 21: I wake up to a message on my phone from Nurse Pain #2. "Hi Emily. This is Nurse Pain from Dr. Pain's office returning your call from yesterday and I guess that Dr. Pain needs you to come in for an appointment to dictate what happened to you on the Neurontin so that he can request the Lyrica. I see in your chart that you failed on the Neurontin but I don't see anything about what happened. Please call our office to schedule an appointment."

Note: I had called Dr. Pain on call regarding the Neurontin because I was so sick. And, I had called the office the following week to ask what to do next and he prescribed the Lyrica. I told them what symptoms I had experienced on the Neurontin. At the time he prescribed the Lyrica I was told the dictation to MA would be forthcoming. I was never told that I would need to come into the office for an appointment regarding the dictation. So, I had a prescription for a drug, but no request to my insurer.

Waking up to this message immediately put me in a foul mood for the day, all before I got out of bed!

I called Dr. Pain's office back and said that he was supposed to dictate this over 10 days ago, and that no one had told me that I needed to come in for an appointment. I was very frustrated and insisted that Dr. Pain call me sometime that day and speak with me over the phone so that I could quickly tell him what had happened to me on the Neurontin. Or I could tell the nurse and she could write it in the chart.

Honestly, there was NO reason I needed to come in for an appointment. I was told that Dr. Pain does not speak to patients on the phone and I must come in for an appointment.

I was transferred to the appointment secretary. She offered me an appointment on Thursday of that week at 3:30. I could not make that appointment. I was repeatedly asked by the receptionists and the nurses why I could not make this appointment. Honestly, it is not their business, nor is it appropriate conduct. The truth is that if I went to see Dr. Pain on Thursday, I would not have been able to see my dad for his 65Th birthday, something we had planned long in advance. Given my stamina, I could not go to a doctor's appointment and see my Dad. I did choose family over a doctor's appointment. And I did choose a prior commitment. My dad does only turn 65 once.

When I asked what other appointment times might be available I was told that the next available appointment was after Labor Day! Another two weeks to wait! I asked if they had any 'sick' or 'emergency' appointments blocked out and she said, "No. He's very busy. So you don't want any of these appointments?" I said, "No, I can't wait that long." And she hung up.

So, I had to call back again and request a nurse. Again the nurse says to me that I have to come in for an appointment. I say I do not understand why I cannot speak with Dr. Pain on the phone for five minutes. She says, "Dr. Pain does not talk to patients on the phone. My doctor doesn't talk to patients on the phone either." I said, "All of my doctors speak to me on the phone when necessary." She says, "Well, I don't know who your doctors are. But you will have to come in for an appointment. I'll transfer you to appointments."

I admit that by this point I had completely lost my cool. I did lose my temper. I did yell at the nursing staff out of complete and utter frustration. I was flabbergasted that I was expected to wait at least another two weeks to come in for an appointment. When I told both nurses that I had originally scheduled an appointment for THAT day after my first appointment but had been told to cancel it because I wouldn't need to come in, they did not apologize. No nurse accepts any responsibility in that office. When I say, "I'm frustrated," they say, "Well, I'm frustrated too." Huh? I think it's supposed to be, "I'm sorry you're frustrated."????

For the second time I was transferred to appointments by another Nurse Pain. Again I was offered the same choices. Again, the appointment secretary snapped at me. She told me that he is very busy and is double and triple booked. I said, "Oh, is that why I had to wait three hours for my first appointment with him?" No answer. "So, you don't want any of these appointment times," she says. "No, I do not." Clank, the phone slams.

I call back a THIRD time and get Nurse Pain who is 'in charge' at this clinic. I tell her she is the one who told me to cancel my appointment and now I can't get one. What am I supposed to do? She says, "You're right, I did tell you to cancel that appointment. Can you come in tomorrow?" I say, "I wasn't offered a time tomorrow." She replies sharply, "I'm asking you if you can come in tomorrow? Can you come in tomorrow?" I say, "Yes." This time she calls appointments herself and the next thing I know I'm scheduled for an appointment the following day, Wednesday August 22 at 1 pm. "Suddenly" an appointment time appeared.

Losing my temper was wrong. I admit that. And I did apologize at my appointment for losing my temper. When I apologized the nurse stood completely still, kept her back turned to me (she was using the computer) and said NOTHING.

Still, I can't help but see that the squeaky wheel did get the grease. I did get an appointment after I complained enough. I shouldn't have had to do this to get the appointment. And, by the time I finished the round of calls I caught myself so enraged that I kicked a door just to hear it slam. My mom looked at me in complete shock. I'm not a yeller. I'm not full of foul language. I'm not super moody. I'm not aggressive. After lunch, I ended up with a stomach ache and horrible cramping from the stress of the entire situation--something that hasn't been happening for a long time.

Usually, my strategy is to shower them with graciousness. Keep being gracious and don't lose my cool. But it does NOT work with this office. No matter what you do, you lose.

As it turns out, when I went in for my appointment the next day the entire office staff glared at me and rolled their eyes at me. Dr. Pain walked into the exam room already angry. My conduct was wrong. I apologized. No one has ever apologized to me for his/her conduct in that office. And to treat patients rudely and 'punish' them for losing their cool under stressful circumstances is not a way to operate.

One of my favorite nurses (who works for my urologist) has told me that it doesn't matter how stressed she is, or that there isn't another nurse hired to replace the one who recently retired, or if a patient is upset with you--her job is to be gracious and NEVER take out her frustrations on the patient. Bravo Jackie!

Aaah, and we're just getting to the meaty part.

Wednesday August 22: Dr. Pain's office is gorgeous. The first time I walked in I thought, 'Wow, they have really made an effort to make this office warm and inviting. They have made such an effort to make it feel like it is not a medical institution.' But, immediately I was jarred out of that comfortable feeling by a rude receptionist. I'm not sure she knows how to smile.

Again, I took Mom with me for this appointment, as I was almost terrified to go.

When Dr. Pain walked into the office he stayed for less than five minutes. He literally stormed into the office. He did not greet me. He sat down and again began his mantra: "Now you listen to me. I cannot treat your ANS problems. I do not understand the ANS problems. You want Lyrica I can give you Lyrica."

Mom and I: "We understand that..."

Dr. Pain: "No, just listen to me. Now, I can give you Lyrica if that is want you want and if that is what Dr. ANS wants you to have. But, you need to know that I never, never talk to patients on the phone. Never. I am a severe dyslexic and I am a foreigner. I do not talk on the phone."

Me: "Okay. I have with me email exchanges with Dr. ANS describing what happened on the Neurontin."

Dr. Pain ignores this.

Me: "Dr. ANS was waiting for your call on Friday August 10 so that he could discuss things with you."

Dr. Pain: "He was not waiting for my call."

Me: "Yes, he was waiting for your call." In fact, I had received an email from Dr. ANS the morning of August 10Th in response to my email letting him know Dr. Pain was planning to call him, saying that he would look forward to Dr. Pain's call and speaking with him.

Dr. Pain: "No, he was not. Just like I won't call him, he won't call me. No doctor is going to take the time to call me. And I'm a busy man. I was out of town for 10 days. 10 days! I'm a very busy man. I will call him if I have time, if I have time."

Every word Dr. Pain speaks to me is angry and harsh. During this last sentence he gets up from his chair and begins to leave.

I say, calmly: "Dr. Pain, I understand that you are busy, but it is not fair to your patients to make them wait like this..."

Dr. Pain cuts me off, begins stepping out of the door and yells: "If you want to be my patient, you can be my patient. If you want Lyrica, I can give you Lyrica. It's your choice," and walks out, sharply closing the door behind him.

I say to Nurse Pain, who was present for the entire appointment: "Does he treat all of his patients this way?" And she says, "You have to understand he is a busy man."

Oh good grief! Aren't all doctors overwhelmed and overworked? Does that mean that they get to be rude? Aren't chronically ill people feeling overwhelmed and frustrated on a daily basis by their challenges? Does that give me permission to be rude to everyone? NO. I try every single day to put a smile on my face and treat others with respect.

After Dr. Pain leaves the office, I begin to dialogue with Nurse Pain. This is when I apologize for my 'behavior' the previous day.

As she is wrapping up, I ask her if she would like me to read her the list of symptoms I experienced on the Neurontin, as well as Dr. ANS's explanation as to why I need to treat my neuropathic pain in relation to my ANS symptoms. Nurse Pain explains that MA does not care WHY I failed at the Neurontin, they just need to know that I failed at it. She said that hopefully since Dr. Pain was going to put in the dictation that I fit the criteria for Fibromyalgia, I would get approval of the medication. (Lyrica was just recently approved by the FDA for Fibromyalgia).

However, when Toni received the illiterate dictation (which I described in an earlier post) it did not mention Fibromyalgia (or anything else that she could use for my case.).

I ask if perhaps they have samples. Nurse Pain comes back with the prescription and a coupon for 7 free tablets. She tells me it is for 14 free tablets. She counts the days on the calendar to tell me how long this will last me. I said that the problem is that Dr. ANS would prefer a dosing schedule of every day, not every other day, and this is why I really needed Dr. Pain and Dr. ANS to communicate. She tartly replies, "You will follow Dr. Pain's dosing schedule."

Dr. Pain prescribed Lyrica to me for a month at 25 mg every other day. This is NOTHING. And, he did not allow for me to increase if I was tolerating the medication. We had no discussion of dosing or a dosing schedule or a reasoning for his choice of dosing.

I say to Nurse Pain: "About how long does it take to begin to notice the effects of the Lyrica? I know with the Neurontin it takes about a month to get into your system."

Nurse Pain: "Now, I really think you need to think more positively about this."

I am completely shocked by this comment. Each time I leave the office, no one tells me about side effects, things to watch for, how long a medication takes to work, etc. I did not see asking how long it takes a medication to begin working as 'negative.'

I then try to ask nurse pain what else helps with neuropathic pain such as ice packs and heat packs.

She then turns to me and says, "Are you in counseling?"

At this point my mom says, "This is not a psychological issue. She has had 7 years of counseling."

I say: "I have been sick for nine years and have had a counseling for most of those years."

Nurse pain turns to me and sharply replies: "Well, clearly you haven't learned all of the coping mechanisms you need yet."

I'm completely befuddled and my mom takes over. Early on in my illness we fought tooth and nail to get a doctor to believe me. But it's been a long time since anyone has pulled the 'psychological issues' out of their pocket.

Nurse pain sits down next to my mom and says, "Now listen to me. A lot of our patients find a great deal of help by going to the support group for pain. That is how they learn things like whether heat or ice can help them and other ways to cope."

My mom explains that I have a very strong online support network of people with illnesses similar to mine, and many of those folks are also dealing with issues of pain. I note that I cannot sit up long enough to go to a meeting and again note how strong of a support network I already have. (She didn't ask me first if I had a support network, she just made the assumption that I 'needed' one.)

I wish in these moments I could come up with the perfect comebacks. I wish I would have thought to say how well I do cope, and how many people comment on that on a regular basis. I wish I'd had the courage to say, "I cope very well, except when I am being treated like this!"

I wish that I'd had the courage to say to Dr. Pain that it's nice that he got to go on vacation but my pain doesn't go on vacation just because he is on vacation. So, he should have taken care of the dictation before he left.

As Nurse Pain readies to leave the office she throws us for one more loop, that really put me over the top.

She says to me, "How can Dr. ANS treat you from a distance without seeing you? How can he have not seen you since 2004 and still treat you? How can he do that?"

I explain that he has made the decision that travel is too difficult for me and that he sees no reason that seeing him in person would change our decisions. I explain that I email with him on a regular basis, have phone consults with him, and can page him if need be and that he coordinates care with all of my doctors. She still says disapprovingly that she still does not understand how he can treat me.

Nurse Pain also states that she did not know that Dr. Pain was supposed to call Dr. ANS. I said that I had talked in depth about it to Nurse Pain #2. Nurse Pain says that Nurse Pain #2 didn't tell her this and so she didn't know. Nurse Pain says that she has to remind Dr. Pain to do these things or he does not remember!

Again, the office demonstrated it's lack of communication here. And, no personal responsibility was taken. When I first came in for my appointment, Nurse Pain asked about the records I said should be there. I said I had brought in detailed information about my pain and a letter from Dr. ANS. She snapped, "Well they aren't here, and we never lose records." Never? Are you sure they aren't sitting in Dr. Pain's house somewhere?

I don't know how to reply in these circumstances. They did lose my records. They did fail to communicate with one another. They did fail to coordinate care with Dr. ANS. They did not apologize. They were rude and condescending and demeaning. How can Nurse Pain question Dr. ANS in that way, when the care they are providing me is so sub-par.

All I can think is that during this appointment NOTHING was accomplished. Dr. ANS is the one that walked me through every moment of the Neurontin failure. I have access to him at any time. I'm baffled that I've just spent an hour at Dr. Pain's office just to get yelled at.

I'm flabbergasted that he did not mention how sick I had been on the Neurontin, or ask what happened that made me so sick. He has never asked me about my pain, has never examined me, and has not asked me about my experience on the Neurontin. The latter is a huge issue to me because I reacted so strongly to such a small dose of this medication. This is not unusual for me, but there is no documentation of this in their charts. Also, I question how a doctor can make the best decisions for me regarding new medication choices and dosing without understanding my past experiences.

I think what struck us the most was the comment by Dr. Pain that he is a severe dyslexic and a foreigner so he cannot talk on the phone. This explains why a nurse is present at all times during appointments and does all of the typing on the computer. I certainly want people with disabilities to have access to reasonable accommodations if it means they can perform the job well. Thank goodness for all of the technology we have today to help someone who is dyslexic.

I didn't realize however, that being a foreigner excused him from 'talking on the phone'. This is a major problem. If Dr. Pain cannot communicate with others (and his verbal problems are not the result of dyslexia) this means that he cannot appropriately coordinate care with other doctors, with his own nurses or with his patients. Why was he on call the night I phoned if he cannot talk on the phone? Scary.

I honestly believe that if Dr. Pain had simply made one five minute phone call to Dr. ANS before my visit, NONE of this would have happened. And I would not have had to deal with such treatment. I'm not asking for rocket science here. The two could have communicated about what medications to choose and why, and about a dosing schedule. Dr. ANS could have quickly briefed Dr. Pain on my underlying condition.

As I was checking out from my appointment, Nurse Pain comes out front and asks me if they can make copies of the email exchanges between myself and Dr. ANS. I said that I did not feel comfortable with them making copies of them all (as they had information not relevant to Dr. Pain) and she rolled her eyes at me and walked away. I had asked twice during the appointment if I could read the two short paragraphs in the emails that I thought were most helpful and both the doctor and nurse were not interested.

As Nurse Pain stepped out of the office at the end of my appointment to get the Lyrica coupon, I broke into tears. Mom and I agreed that I didn't want the nurse to see me crying because that way I was 'letting them win'. Unfortunately, I'm a crier, not a yeller. So, when I'm attacked I cry. I quickly said, "Tell me something funny." She pulled out the Martha Stewart Living magazine she'd been reading at the office and said, "Oh, here's something funny. Here's a recipe for Spotted Dick pudding." I did laugh hysterically right then and there. The rest of the day I just kept telling myself, "Spotted Dick Pudding. Spotted Dick Pudding." Well, if Martha Stewart can publish it in her magazine I can say it right? Mom topped it all off when she said, "He's not a spotted one. Just one without spots!"

I tried my darndest to find the recipe on Martha Stewart Living for that pudding, just for your own amusement, but to no avail!

As it turns out, after Toni, Dr. ANS and I worked tirelessly to submit a claim to the medical director at MA, Dr. Pain called Dr. ANS. He called Dr. ANS on Wednesday August 29th. I guess he decided despite being such a busy man and not being able to talk on the phone he could do these things.

All I know is that it was too little, too late.

The Lyrica was denied.

And Dr. Pain and his office staff had already demonstrated such poor conduct that it was too late.

What's at stake here? What's the bottom line?

1. Failure of communication between office staff.

2. Failure to provide adequate care (no examination, no questions about my pain, etc.)

3. Poor, demeaning, rude conduct and treatment of patients

4. Lack of coordination of care

5. Refusal to accept personal responibility for mistakes.

6. Lack of timeliness in getting things done, especially the dictation to MA.

7. Overstepping bounds of their scope knowledge (i.e. questioning my specialist's care, inappropriately approaching psychological issues)

8. Lack of availability of appointments

9. Inadequate documentation provided to MA (Nurse Pain told me that they are receiving all denials for Lyrica, however, I am wondering if it is because they are not providing proper documentation?)

And if I hear one more time, "Now you listen to me," or "I'm a busy man" I will scream!

Here's to pain free days: free of Dr. Pain AND free of neck pain!

Emily

P.S. Yes, I realize this post is a bit repetitive and could use some serious editing, but I'm thoroughly exhausted and cannot expend one more ounce of energy on Dr. Pain! Sorry for the poor writing this time around (and for the grammatical and puncuation errors!).