What you want you doctors to know-part 2 -Chronic pain patients bill of rights

[kolo13]

OK so I took some of the input I got here, and I read through many posts and some of the archives, and I met with several doctors and administrators, including the medical director and the wellness director and the CEO of one of our community health care systems. They are interested in working with me to improve their systems for dealing with chronic pain patients. With no other group of patients do we see this hostility between doctors and their patients. I've caught some of it already. Some of the doctors went off on me with their horror stories and think I am being naive about the depth of the problem and some on this site have suggested that I don't understand what chronic pain patients go through. I have been a chronic pain patient for thirty years and my wife is the above mentioned CEO. I have seen and experienced a lot of what chronic pain patients go through. And I am trying to help here. We have a system in crisis and what's happening here is coming to where you live too if it's not already there. The largest PM clinic in our state has closed to new patients and the organization that provides health care to the homeless lost their ability to prescribe narcotics. This has caused a chain reaction where a lot of doctors and the other large community health organization have also had to close their doors to new patients. This has caused the remaining providers to be under a lot of pressure and they need to find a better way of dealing with this or shut their doors too. This is causing a lot of suffering. This week my wife was trying to help a lady who had been on pain meds for years. She was angry with her doctor and went to find a new one. Well, needless to say she found that was impossible and last I heard she had gone to the ER where they gave her a referral to the state rehab clinic - the one with the endless waiting list. It is situations like these that cause me to want to help. I know that the problem might be too big for me to help at all. I might just get flamed out here and have a bunch of doctors let loose on me with their frustrations. But I do have access to this one system ( more than a dozen clinics ) and the people I am dealing with are compassionate and want to help, and we already have interest from the largest provider system in the state who want to be informed if we come up with something better than their current narc contract. So what we have in mind is a chronic pain patients bill of rights. Please, can anyone help with concrete suggestions for what we would include in this that could address the most serious concerns? I have doctors who are on board with this idea and would like to see more consistency among doctors in how they treat their patients. They are willing to set up re-training programs to give all their providers a better education on the problems faced by chronic pain patients. Some are a little resistant to this however and they all insist that it will have to be accompanied by better understanding on the part of patients about what their responsibilities are going to have to be to help deal with the epidemic of problems that accompany narcotic prescribing. What are patients willing to do to help with this? How can we be more effective in educating the patients? And the problems are huge. There is an enormous black market in pain medications everywhere in the country. I am looking at a DEA report on the retail price of pain meds on the street for the month of August for California. $10 - $120 per pill for Oxycontin, $10 - $75 for Fentanyl patches, and so on through every pain pill I've ever heard of.. Every one of these pills came from someone who told their doctor they were in pain. Now that wholesale doctor shopping has been curtailed through pharmacy reports distributed to every provider we actually have gangs that recruit senior citizens with legitimate diagnoses to go in with MRI's and cat scans and a script to follow to maximize the amount of meds given. But every study I've seen indicates that the criminals provide a small percentage of the illegal pills. Most of them come from people with a legitimate reason for pain who are selling a portion of their pills, often to be able to afford their other medications. When a doctor asks you for a drug test it is usually an across-the-board attempt imposed from above them to find out who is NOT taking their meds.  Doctors are under intense scrutiny from the medical establishment and law enforcement to be able to justify every narcotic prescription. I have noticed on this site that some patients do not understand the laws and regulations that their doctor is operating under. I've seen patients accuse their doctors of trying to pad their bill by making them come in for an appointment every month. Are they aware that the laws have changed to require patients who are receiving narcotics to come in to pick up paper scrips in person each month? No more call-ins and no refills are permitted. And while some doctors would allow their patients to come pick those up at the front desk, their insurance companies began to demand that an exam be done for each scrip. Doctors are required to make attempts to find other ways to control pain. When they are called before the pharmacy board they need evidence that they tried other methods besides narcotic maintenance to control pain, and while I realize that it is a giant hassle to feel like you are being asked to try experiments on your body when you know that the pills work, to accuse the doctors of just trying to sell you expensive treatments to make more money is in most cases going to be unfair. In fact an unwillingness to try other approaches is on the list of signs of addiction that the doctors are supposed to look for. This is one of the issues we might deal with in the patients bill of rights. Ironically, one of the most vocal groups pressuring doctors to stop prescribing for chronic pain are ex-pain patients. All you have to do is go over to the substance abuse forum to see that many people accuse their doctors of causing them to become addicted, "If only they had told me that these were addictive I never would have taken them", is something I've seen many times and in fact I've seen many people express on that forum that doctors are irresponsibly prescribing narcotics willy-nilly (again just for the money) and need to be prevented from prescribing them at all. These are the patients, by the way, who win lawsuits against their doctors and make it much more difficult for any of them to prescribe for pain. Anyway, I could go on but I think you get the idea. I have good friends who are compassionate, caring doctors who are frequently fighting for the rights of their patients against this array of forces and yet they often get accused, unfairly, of all these things I see people accusing their doctors of on these forums. But if we can come up with a way to do this better it can be implemented in this system, affecting hundreds, maybe thousands, of patients, and perhaps even have influence beyond that. If any of you understand what I am trying to do and could contribute specific coherent ideas I would appreciate it very much. Thank you.

[ginsa]

This post really touches me. I think that to begin with, educating patients about what addiction to a drug means might be helpful. I went to a pain clinic and was given increasingly higher doses of hydrocodone and told that they were addictive, but I really didn't know anything about the process of addiction/dependence. I've only learned about rebound pain since I decided to quit opiates.

Then, I think that it's important for both Dr, and patient to be willing to titer the patient down periodically to find baseline. What I've read in some of the posts on the addiction forum is that when a patient has concerns about being addicted and wants to get off the medication, the Dr. responds by cutting them off completely. This seems hysterical to me.

[concerned621]

Perhaps having volunteers who are chronic pain patients in a doctors office to pre-screen patients who are there for pain meds. A true chronic pain patient can pick out somebody with chronic pain and somebody who is using for fun. The other thing that should be in the patients bill of rights is that a doctor should be required to tell the patient when you take oxycontin or put on a fentnaly pain path on you will have to detox from these medications and here is what is involved.  I found that out only after I asked when I would be going off these medications.  Another thing chronic pain patients should NEVER need to deal with is going off a medication that has taken years to get to find out that it works only for the insurance company to say they would not pay for it any longer. Forcing the patient to try a number of other medications.  Making the chronic pain person's blood pressure drop so low she almost stopped breathing.  I think a clinic or doctors office should have a mandatory mission that when a doctor retires they will either be training the next pain management doc or hiring that next doc.  My doctors office has known me for over 10 years yet not one other doctor in the office will help me if my doctor is out.  It makes you feel like you are one of those people selling and abusing drugs when all you are is a person that lives daily with excruciating pain.  Good luck in your venture.  More is needed in this area.

[Tuckamore]

You can hear all the distrust in our members because so many have been burned, accused of doctor shopping, refused narcotics after years of pain and/or pain management or accused of being drug seekers and worse.

I hear this often that when a patient goes to a PM Clinic and they see every PMP and PA in the clinic. Ask them how this builds patient doctor relationships?  It's like these clinics are only there to dispense narcotics. What happened to being a physician? What happened to the Hippocratic oath? Why did they even bother to spend years and thousands upon thousands of dollars to enter this profession if they only a judge and jury dispensing narcotics?

PMP must be the smartest and brightest that learned compassion and understanding on the knee of their mother. Their are not Gods and so many seem to have that attitude. Education must be implemented in the initial patient screening. Inform all patients of the clinic policies, what the DEA demands and what they can expect. PM patients are required to sign a contract that protects the clinic and physician but there is no bill of rights for patients or protection for the CP Patients. They are at the mercy of drug screening that runs as high as a 60% error rate. No consideration is ever given to the patient that there could have been a error in the system or that the test was just plain faulty. I understand the term Pill Nazi given the circumstances I just listed.

CP patients for the most part do not realize the scrutiny that these clinic are under from the DEA. They are unaware of the laws and take the drug screening and questions and requirements personally, mostly due for the treatment they have received either prior to their arrival or during their approval process. Very few understand that their physician licenses are in jeopardy if they do not jump through the hoops that the DEA imposes upon them. They do not realize that often the PMP must justify every prescription they write or that they have to prove that they are doing other things to treat the patients pain besides just handing out a controled substance. Is it any wonder that they feel personally attacked? Education will improve the understanding of the consumer.

There needs to be a partnership between that patient and the physician. Good physicians know how to build this and will be surprised at how ready most patients are willing to play a positive and active role in their PM. This we against them attitude begets an fruitless environment. How can such an atmosphere treat and manage patients that live with horrid, often indescribable and irretractable pain 24/7. A physician must learn how to talk to with his patients, not talk at them. Education, patient doctor interaction and collaboration along with partnering will go a long way in changing the course and attitude in this clinic.  

For some staff and possibly patients it may be too late. The burn out and mistrust has been ignored too long. I'm not sure there is any hope or fixing for the clinic attitudes that you describe. A good house cleaning may be required. Attitude always comes from the top. If those in authority are not on board you are fighting a losing battle. I don't believe that all PM patients are demanding, screaming and unrealistic. Ppl for the most part respond to how they are treated. If you want kindness, trust and understanding you must give the same. Condescending attitudes of staff will bring out the worse in your patients. Treat me like an idiot and I will act like one. Treat me like an equal, worthy human being and I will live up to your expectations.

My PMP is my PCP. I know her 3 children's names and ages. I know her father died with lung cancer and that her relationship is rocky with her mother-in-law. I have even once met her children. She shares photos as I do also. She knows the same of my family. Yet I call her Doctor and I respect her. She is not my personal friend but I know that I can count on her. And she knows that she can count on me to use the narcotic that she prescribes me responsibly. I will not betray the trust that she has given me. I would never sell or share the narcotics that she trusts me to take. If I am in trouble with acute pain I call her compassionate nurse for directives. She has even hospitalized me for pain control. I trust her with my life, indeed I would trust her with my children's life. Everyone should have this type of relationship with their physician, everyone.

In my opinion your PMP should strive for a similar type of relationship that I have with my physician. I know that Mollyrae has the same relationship with her physician. Is this a Wisconsin thing? Is it the implementation and the delegation of chronic pain patients to PM Clinics that has destroyed the very possibility that a close, trusting patient doctor relationship could ever exists?

I don't have the answers. I am just extremely grateful that I do not attend on of the PM clinics where the physicians are viewed as Pill Nazi's.

And that ends my opinions and rambling......
Tuck

[kolo13]

Thank you so much everyone,  This is exactly the help I needed. I don't know that anything will come of this but I do have some really good people who are grappling with these issues and and want to better understand the problems from all sides who will listen. And what an incredibly good idea it is, concerned,  to find volunteers (I'm not even sure it would have to be a volunteer position although I have no doubt volunteers would be available) to intercede with patients who need or ask for narcotics. A person in that position could take care of a bundle of the issues raised here.They could be that kind, understanding voice ( who better knows patience than a chronic pain patient [like the pun?]), they could educate the patient; inform them about what they are getting into, the trade-offs made when you take opiates for pain, and how to not run afoul of the complex web of rules and regulations. They would also have a better eye for the scammers, although I'm certain that's harder to do than some of you think. And give them some power to be an ombudsman, when it seems the doctor has made a mistake or an injustice seems to have occurred. This last will be the hardest, some of these doctors will have a hard time with the idea that they don't know everything already. But I am quite sure that many of them would be happy to have some help in an arena they are uncomfortable with and just don't know how to deal with.

And Tuck, you hit it on the head with the comment about the punitive narc contracts being set up to protect the provider, this is exactly why I wanted to balance that with protections for the patient, there has to be at least some sort of mediation for problems, not my wife getting a call at night from someone who is justifiably (or maybe not) hysterical because their meds were cut off that day. I do appreciate the depth of your understanding of the problems, I only wish that you could fill one of these ombudsman positions I hope we can set up.

OK trouble, for once in my life I won't be offended by the use of the term nazi. I have seen a lot of things but few rise to the Kafka-esque absurdity of the situation you encountered. I'm sorry.

Seano, It seems so unfair that there is no good way to ensure continuity of treatment when, for whatever reason, people find themselves with a new doctor. This is such a big cause of suffering and I don't know how it can be dealt with. There is always going to be a shortage of doctors willing to deal with pain at all. I think we have to put in terms of asking doctors to respect a previous doctors treatment for the sake of the patient. But I think this one might be on the wish list.

Thank you ginsa,  I think this is the heart of it. Patients and doctors have to be more aware of what they are getting into. Sometimes pain is a permanent situation as I'm sure it is for many of us who searched for this site. But more often it's not. So many people are shocked to find the situation they are in when they have taken opiates for an extended period but then no longer want or need them. Better education will help, but they must be given more consideration than, "Here's your last scrip, good luck."

Oh mollyrae, I don't blame you for not trusting me. I sure I sound like I'm full of it when I sit up at night typing because I'm hurting and can't sleep. I try not to send until I can look at it during the day, but...  But I assure you, it is more than a handful of people having problems. Would it help if I told more of my story?  For many, many years I was a very good patient. Not perfect, but very good. I never scared my doctors and it was quite clear I had painful injuries.; I learned to detox myself occasionally to try to keep my tolerance down. But it was hard.  Things beyond my control, like my wife getting a new job or a change in insurance, caused me to get jerked around every which way. And there was always the temptation to make the pain go away instead of just taking enough to make it barely tolerable, and tolerance always crept in. Maybe that means that I was always an addict and I just kept it under control enough to be able to continue to treat my pain. But earlier in this decade things were getting worse. The reconstruction surgery that miraculously enabled me to keep my foot was breaking down and I was getting very immobile and I was in a lot of pain. My doses had gotten higher than I could easily sustain. So I went in for what I considered a risky surgery to try to rebuild it again. I saw an anesthesiologist in advance and discussed my current meds. He promised he would take care of me. Well no such luck. I had a different anesthesiologist who decided for god knows what reason that I should not receive opiates during or after surgery. My wife heard me screaming long before I woke up. When I did wake up it was literally a nightmare. They injected me with ketamine, apparently just to stop me from making noise, so now I had insane hallucinations to go along with feeling every sawed and drilled bone. There's more but I'm getting uncomfortable thinking about it. The part I meant to get to was six months later when I was supposed to be feeling better and maybe going off the meds completely because I had the surgery. It was as bad as it could get. My foot was gray and cold to the touch and hurt bad all the time. I couldn't walk at all. This is when I just started buying drugs on my own. There are all kinds of opiates for sale everywhere. This wasn't a good idea. After all these years I went and lost control and became quite an addict. Well, that is not where I am now. I was trying everything and it turned out that the reflexologist had the magic touch and woke up my leg and it started healing. I still have a lot of pain but it is not as bad as it used to be and I think maybe I can handle it without drugs, at least I'm trying to. I took opiates for too long, however, to just be clean. I'm on suboxone for now and I really don't know if I will have to take something for the rest of my life or not. So I am an addict, and a long-time pain patient, and in recovery, and on opiate maintenance. I do feel like it gives me some experience to speak from. My motives here arise from seeing people suffer unnecessarily and being just arrogant enough to think I might be able to help.

[Ella789]

I was just wondering if any of the Doctors have looked into the D-Phenylalanine ?   I am really curious about the information on some websites that seem to think that this could be an alternative to useing some opiates.  I understand it is not fesiable for severe pain but could it not be tried when considering trying other things?   Do you know anything abt. this or from other Doctors ?  

Thanks for your and others' thoughts on this.

doctorsofuse.com/condition/document/21664  
or
disabled-world.com/artman/publish/dl-Phenylalanine

Ella  

[rarebear]

First are doctors getting people addicted?
YES is it to hard for them to say you will become addicted to this everytime he writes a script//////

Two do people pay $120 for a oxy-contin  Hell No I grew up in a big city in NJ and maybe a rich junkie in withdrawals might pay that but for  $20 someone could got downtown or to NYC and buy a bad a dope.. So why would they want an oxy-contin?  Thats all DEA BS

Three Have docs tell patients what the deal is..
I do to the largest spinal care hospital in the nation and they are so screwed up..
I have to call 10x to get a call back
nurses cant give a IV injection before a epidural
1st day doc tells me about they offer Bio-feedback , acupuncture, and medical massages and I ask about them and they don't do any or them.....  

Docs get nasty when I say no to back injections that have not worked for three years

I just read some of my record and they exaggerate about injections as they can say they dont work and keep the heavy sales pitch on getting them if they dont help....

This is the biggest place whats the worst like???

Put these in your rules