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Thread: Are We Slaves to Pain Treatment Steered by Politics and Profits?

  1. #1

    Exclamation Are We Slaves to Pain Treatment Steered by Politics and Profits?

    Is it true that we have little to zero power in the treatment of our constant hell of chronic pain? Many of us have been dealing in this hell for so long that our knowledge of treatments available, many times surpasses, or at least, has a perspective no book can teach. Studies are by nature generalistic. Good starting point, but we are complex individuals. Each with different body chemistries, injuries, tolerances, emotional realities, and on and on. Yet, physicians, for the most part, find it easier to dictate life changing decisions, without a real discussion of ones holistic being. Sure, I understand that medicine is a business. A doctor must see so many patients a day in order for the billings to meet the comptrollers income goals. So, that leaves a certain amount of time per patient and then the doc has to move on to the next exam room. I understand. But, it doesn't work! Each of us have individual complications that need considerable scrutiny. But, by whom? The docs don't have time and we, for the most part, can't read an MRI report without a medical dictionary, and then the clarity has the consistency of muddy water.

    What we are somewhat expert at, is what works for us, individually. The ones who experience the different drug cocktails, and over the years have a good idea what works for us, responsibily, and what doesn't. Yet, we aren't given the respect of that knowledge. Somehow, the discussion comes down to medications of which we are not supposed to have the ability to intellengently discuss because of the bias the drug has instilled in our brains. We're addicts or highly dependent. Not objective. I find this thinking to be elitist arrogance. But, guess what, we have no choices anymore. You can't go looking for a new doctor. The news gets out. You want to have input into your treatment? Doctors want no part of that type of patient. !5 minutes in, nurse or PA for 10 minutes, and, if you're lucky, you can see the doctor for 5 minutes. If you have an issue, you best word it in 3 minutes or less. My experience has been that you really are gratuitously listened to, then the doctor tells you what the next step is in your treatment. Should you have an objection, well, "let's try this, and we'll talk about it next time". But, next time, the time sequence is the same. So, it takes 4/5 months to get a point across that could have been handled in one visit, if there were such a thing as patient respect. In the mean time, YOU get to live in a hell that the doctor seems to have no idea as to what that means on a hour to hour basis.

    Now I must give the doctors some slack. The government has put them in such a dangerous position, that doctors must now consider politics in YOUR pain management treatment. Ludicrious!! The compassion tha may have existed when you first started at the clinic 10 years ago, has evaporated into a parinoid assessment of "is this going to stand out to the feds?" "Will I be challenged in my treatment decision?".

    Is there and answer? Does anyone have an idea or thought that can give some hope to this hell. I'm not going to be any better next year. In fact, each year is going to get worse. Now, if they take away medications that have been found to keep the pain at a point of having a bit of a life. WTF are we to do?

    We work so hard to make those around us think that we are handling the situation, when inside, we wonder how we're going to take the next chunck out of our self respect.

    I know I'm not the Lone Ranger in this outlook. I've read this blog for a number of years. You are a very couragous and intellegent group. Full of differing views. These things have helped me so many times, but I just don't see anything but hardtimes ahead in these political times.

    Legislators should legislate and doctors should practice medicine. Each performing their profession in a responsible manner. Drug corporations are capitalistic slime and doctors are becoming just as afraid as we are.

    In honor of "Speak like a Pirate Month", ARRRRRRRR!
    No matter how cynical I try to be, I just can't seem to keep up with how bad things really are!

  2. #2
    snorp

    I saw a journal where a doctor is shown talking to a patient, but has his fingers crossed in back of him, indicating there are things he is not telling the patient, such as constraints placed on him by THE SYSTEM.

    You have certainly raised many issues which frustrate us as we try to get care for pain.

    In addition to the issues you raise, I see a few related issues.

    1. The doctor is the face of medicine, but not necessarily the one driving the standards any more. On TV, Dr. House (our legendary hero because he cares about pain) gets away with manipulating Lisa Cuddy, the administrator. In real life, such a doc gets his ______ handed to him.

    2. There is a national, state, and even a corporate notion of standards in care. Some of these derive from the accrediting bodies. Some are economic considerations. We are seeing the emergence of "economic credentialing", which means if a doctor does things which are not economically what the "head" honcho wants, he may lose his privileges.

    3. Pain must be recognized, and in particular central pain must be recognized as an actual thing. Thanks to the efforts of the IASP, central pain finally has an ICDE number, which means institutions and doctors can bill specifically for it. This ICDE number is 338.0 The number AFTER the decimal point typically (in many other diseases) gets turned into other numbers such as .1, .2 etc. This kind of thing is yet to come, but may allow for more time to be spent as billing is increased for the more severe cases of central pain. Many of the family practice docs who routinely fill meds, do not know about this billing number, but as they become aware of it, they may be more willing to see more of us, especially if it gains acceptance for greater reimbursement, than say a common cold. This is of immense help. Prior to this we had to go under a different designation. As knowledge of the condition grows, perhaps our coding will provide to us access to greater care.

    4. Presently, much of the increased billing ability at pain clinics is linked to "blocks". Thus, a person may get treatment for certain "blocks" which often refer to something an anesthesiologist or rehab doctor does. For example, a block of the C2 nerve gets reimbursed at 600 dollars. This injection is not necessarily more time consuming than trying to juggle complex pain meds, but the latter visit may get reimbursed at 35 dollars. Many doctors say they must get sixty dollars per patient visit to break even.

    Beside patient gowns, equipment, malpractice insurance, office salaries, and merchant costs, the price of office space is very high. Many communities have zoning laws which will only allow doctor offices in certain zones. In many, if not most communities, this is used as a way to "rehabilitate" certain run down areas. "Professional office zone" space is typically either limited or in undesirable areas. The idea is that a doctor is rich enough to tear down old worn out buildings and erect a nice new building, which he has still had to buy at a premium, although the land was junky, since little land was zoned for office space. This is bad policy. At one time, virtually all communities allowed a doctor to have an office in his own home. What usually happens is that investors are savvy enough on zoning change to buy land cheaply, get it rezoned for professional office space, and then sell or rent it to docs at a high price. Requring docs to lease or purchase land held by large conglomerates raises costs greatly. By comparison, many large institutions are granted "charitable entity" status, which means they pay NO property tax. The doctor cannot compete with this, so he ends his private practice and becomes an employee of the hospital. This in turn allows control over how he practices medicine.

    This makes Central Pain profitable where a block is involved, but not necessarily for the extended amount of time which this complex condition needs for ordinary office visits etc. So there is still need for provision for severe conditions of central pain, ie. creation of more coding provisions, so the terribly sick patient can get more time for which the doctor is reimbursed. If all this sounds hopelessly complex, you get the idea why mahy docs prefer NOT to care for central pain. There is also the issue of narcotics licenses, and the possibility some regulator may think a CP patient is getting too much medication.

    5. Doctors seem to be losing power rather than gaining it. As more power goes to administrators, patients increasingly need recognition of the complexities involved in pain treatment. Surprisingly, administrators tend to be receptive to groups of people who meet with them to educate them about pain needs. I think part of it is a consequence of administration by people who do not know pain medicine. Administrators tend to be responsive to public concerns.

    So I think books like The Pain Chronicles, recommmended by Cass, and other works are very helpful. They articulate the special problems. It is not just the doctors who need education, it is the administrators as well. Rather than fight the imposition of standards, people well enough to get the standards promulgators on their side by meeting with them should do so. If you can't beat them, join them. I see no alternative but letters, private meetings with administrators, and whatever media help we can generate, to create greater pain consideration.

    That is why I encourage central pain subjects to use the term whenever they speak of their pain. Just speaking of "neuro pain" , or "pain", does not necessarily carry the same benefit. Many are too sick to get out, but conversations with local news reporters etc. is all good, when it can occur. It is sometimes embarassing to be so sick and frantic when we are in pain. Rather than be ashamed of our predicament, we have to realize that if you don't ask, you don't get. Sometimes our relatives can speak for us. So there is a need for communication wherever it can be accomplished.

    It is not enough to just relate our concerns to doctors. When feasible, it is helpful to meet with administrators, and write letters to our elected officials, asking them to support pain treatment and research. These letters should specifically mention central pain, and maybe a little about it. If one takes five minutes per week, and keeps the letter to one page, revising a little each time, and sends it by email to all your federally elected representatives, eventually someone reads it, and you may get a reply, A helpful reply typically indicates the congressperson has communicated his concern to a relevant agency, such as Kathleen Sibelius, who is administrator over health care for the U.S. govt. I always ASK my rep to write to Sibelius. Can't hurt.

    Save your letter and then improve it a little the next time you send it. Everyone can get email addresses of their rep here;

    http://www.conservativeusa.org/mega-cong.htm

    Put the URL address in your favorites, and then it is easy to send another email on succeeding occasions.

    If we have time to write to this website, we have time to write to those in power.

    I may seem like I am putting too much responsibility on the patient (who is admittedly too sick to do it) in this matter, but I don't see anyone else taking care of business (except for Wise Young), so I guess we have to get involved.
    Last edited by dejerine; 09-22-2011 at 07:33 AM.

  3. #3
    2 easy links to contact legislators in the House and Senate

    http://www.senate.gov/pagelayout/general/one_item_and_teasers/contacting.htm
    UNITED STATES SENATORS
    Contacting Senators
    By E-mail


    https://writerep.house.gov/writerep/welcome.shtml
    Write Your Representative

    This service will assist you by identifying your congressperson in the U.S. House of Representatives and providing contact information.

  4. #4
    Senior Member Tarkus's Avatar
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    Take control, educate yourself and then fire all doctors with a different agenda. I've fired many and now never have a problem.

    I dictate my treatment it's not dictated to me.

    Be Big,
    AMAC
    L4/L5 CES

    www.DRAFT.cc
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    Messages from Alan Maccini and are produced utilizing voice recognition software. As a result of this on occasion a misrecognition of a word will occur and while spelled correctly will result in an unintended word appearing. We apologize for any errors.

  5. #5
    dejerine, Thanks for your professional and personal insight. As always, you come through with a point of view that is not usually available to members out in the world. I hope there is a large number of members that follow through with your letter writing suggestions. It can only help in these times when we are getting swepted into the cracks of a movement to politically control prescription drug abuse.
    avictoria, Your addresses are very much appreciated. I urge everyone to contact your Congressional Reps and Senators to educate them of the people who have so much to deal with personally in the chronic pain world. Without our input, they may not realize the obsticles that the new presciption drug "war" has placed in the way of legitimate pain sufferers. Let's not forget our State legislatures. They may be the closest political power to our individual situations.
    Tarkus, Segs4Vets is a wonderful idea and movement, along with other supporting initiatives for our couragous soldiers. They deserve so much more than is being offered. I congratulate you on being able to seek out physicians that you can communitcate with and be cooperative in your treatment. I'm sure that we all would like to have the availability of doctors and clinics to search, but many locales just don't support that many. Still, your advise is sound.

    With the diverse membership at Care Cure, I would hope that there are professionals in the PR arena. I think an expose documenting the reality of legitimate chronic pain population would serve our issues best. Something that the Discovery Channel or a News documentary would air. From what I hear from friends, most are curious and interested in our realities. The fact that many of us are being swept into the cracks with political initiatives needs to be publically exposed. As well as the delema of pain management physicians. Everyday people are interested in stories that conceivably can be their, or their loved ones, reality at any time.

    I have a couple of aquantences that have been able to use this avenue for different topics they promoted. One medical and one just entertaining history. Everyone wins. The media loves a unique issue, not yet covered by competition, and are willing to pay nicely for well produced product. With our issues, I think there are schools of video production as well as established companies that may like to be involved in such an effort. Perhaps one of you that has the ear of Dr. Young would care to see if he would care to help in such an endeavor?

    Our letters to politicians are a good start. We all know what pace the political push has. Slow and slower. Please, don't misunderstand me. I feel the letter campaign is necessary and a good, on going effort. However, it doesn't stop there. I strongly feel the story needs to be told to the public and, in most cases, that's how the political arms are really made aware of a particular issue. Should the public write additional letters, well, the squeaky wheel doctrine does really work! Each point of view, historic patients to new patients, well insured to minimally insured, rich to poor, educated to uninformed, independent doctors to contract physicians, legislators to enforcement professionals and the general publics perception of the status quo, each have a story and perspective to be told and assessed.

    So, I guess I'm calling for a Care Cure all out effort to see if we can make a substantial difference. If anything, we have a force that has time on our hands. Perhaps we're not always as focused as we'd like to be, but desire and experience has taught us to overcome many obsticles thus far. Then again, I could just be pissing up a rope. What do ya think??
    Last edited by snorp; 09-26-2011 at 01:38 AM. Reason: typo
    No matter how cynical I try to be, I just can't seem to keep up with how bad things really are!

  6. #6
    Senior Member Tarkus's Avatar
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    You're not pissimg up a rope. As one who deals with constant central pain I'm with you.
    Power in numbers but I have seen small groups do amazing things.

    Let me know what I can do, my letters have been written and sent.

    Be Big,
    AMAC
    L4/L5 CES

    www.DRAFT.cc
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    Messages from Alan Maccini and are produced utilizing voice recognition software. As a result of this on occasion a misrecognition of a word will occur and while spelled correctly will result in an unintended word appearing. We apologize for any errors.

  7. #7
    FYI.... just ran across this article from The Seattle Times dated Sept.27th. I saw it posted in the American Pain Society's newsletter. If this doesn't scare the bejesus out of anyone utilizing opiods in their pain management, then please share the alternatives. Check this out: http://seattletimes.nwsource.com/htm...7_pain28m.html

    This is becoming a very serious situation! Please write your elected officials and post any ideas you have that we may use as a group to expose this injustice to the mass population. Afterall, anyone is just an accident or illness away from a life of chronic hell!
    Last edited by snorp; 09-27-2011 at 01:50 AM. Reason: typo
    No matter how cynical I try to be, I just can't seem to keep up with how bad things really are!

  8. #8
    Senior Member
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    Quote Originally Posted by snorp View Post
    FYI.... just ran across this article from The Seattle Times dated Sept.27th. I saw it posted in the American Pain Society's newsletter. If this doesn't scare the bejesus out of anyone utilizing opiods in their pain management, then please share the alternatives. Check this out: http://seattletimes.nwsource.com/htm...7_pain28m.html

    This is becoming a very serious situation! Please write your elected officials and post any ideas you have that we may use as a group to expose this injustice to the mass population. Afterall, anyone is just an accident or illness away from a life of chronic hell!
    My pain doctor had her license suspended for alleged over-prescription of opiates to a few long term patients. It took me three months to find another pain and rehab doctor, and I had to pull some strings at that. It was a very humiliating and ultimately infuriating process. This is a real problem for those of us with chronic pain. It's also a real problem for doctors who treat patients with long term chronic pain and who must be given ever increasing doses of opiates.
    2012 SCINetUSA Clinical Trial Support Squad Member
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  9. #9
    Senior Member Tarkus's Avatar
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    Again the "Nanny State" wants to dictate how we receive medical care.

    This is not a new problem as for many years the Feds have gone to extremes after they left the barn door open. In the 60's and early 70's it was Valium. A useful drug that was over prescribed to every housewife that was feeling down. The long term effect was that doctors stayed away from prescribing it. Of course they just moved on to other new school drugs.

    The sad fact is that the opioids are over prescribed . Guy has a tooth pulled, here's a bottle of Vicadin. High ankle sprain take these Percocets and on and on. In time these people become hooked if they are not careful.

    I have seen many on massive doses of Oxcy that can't tell the difference between their pain and jonesing for a hit. Their doctors thought they were helping but without the proper follow up they were doing their patients a disservice.

    Ok that's legit Docs now let's throw in the "Oxy Factories". Those of us that live in Florida see it first hand. A clinic pops up with full service, Comsult, MRI then a script. Until recently there was no data base to tell if someone was cross-filling scripts at multiple pharmacies in Florida. That led to the "Oxcycontin Super Highway" in the sunshine state. As soon as the Feds would close one down they would spring up elsewhere.

    One one hand I understand the problems. Years ago a doctor at my request my doctor perscribed Valium. The old school drug goes to work right on the nervous system and in my case had a dramatic effect. After that doctor retired I had to search for a doctor to write a Valium script. Most refused but were more than willing to give me Oxy.....hmm.

    To cover their collective asses doctors will now either have to screen all who take these drugs or bail out of the pain management business.

    So caught in the collateral fire are those with long term cronic pain. In an attempt to stop a industry they created the Feds , once again, uses a axe when a penknife was called for.

    The blame falls in many laps. Good docs, bad docs , junkies etal. But the problem for us remains. Many here NEED these drugs to survive, not for sport. Write those letters, call your reps and let your feelings be known. Also have your friends and relatives write. The more the better.

    Don't be fooled the rules can be changed by even the smallest groups, I've seen it first hand in DC so keep pounding them. I have some thoughts on grass roots a course of action but won't make them public, not at this point at least.

    Keep fighting the good fight, I feel for you all.

    Be Big,
    AMAC
    L4/L5 CES

    www.DRAFT.cc
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    Messages from Alan Maccini and are produced utilizing voice recognition software. As a result of this on occasion a misrecognition of a word will occur and while spelled correctly will result in an unintended word appearing. We apologize for any errors.

  10. #10
    Quote Originally Posted by Tarkus View Post

    So caught in the collateral fire are those with long term chronic pain.
    AMAC
    Well put.

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