Is it time for the chronic painers to refocus their efforts ?

My “little blog” just started its 7th year… I have watched people come ready to change the world and people who are no longer around for various reasons.. some gave up fighting, some have passed away and others – unfortunately – couldn’t stand their unrelenting pain any longer and used the “ultimate option” to resolve their pain.

I have seen the number of Face Book pages that have exploded from a few dozens to hundreds or maybe even THOUSANDS.. and often you see the pictures/names of the many of the same people on many of these pages devoted to chronic pages

I have heard of pts that have sent letters to their representatives in Congress and their State representatives… as well as many in the media industry… some had some gathering of protestors in various locations.

Some states have recently implemented legislation that limits the number of opiate doses acute pts can get… but there has been rumors about many prescribers adopting them for all pts taking opiates… just like they did with the 2016 release of the CDC opiate dosing guidelines.

Often pts are told that their pain doses are being reduced or stopped over fear of losing their license… perhaps it is time for those pts who are having their pain medications reduced or eliminated going after the prescriber’s license.

Here is a list of the physical consequences of untreated pain http://www.pharmaciststeve.com/?p=20995 

Perhaps it is time for pts to start filing complaints with the state medical licensing board…  file complaints with www.cms.gov if you are on Medicare/Medicaid or your insurance company. If your insurance is thru your employer and it is a ERISA policy – your company is providing self-insursed health insurance… there is someone within the company has authority over the policy since the  “insurance company” is only a paper shuffler and paying out the employer’s money.

If your blood pressure started to increase as your pain meds were decreased and nothing was done… file a complaint

If you are no longer able to take care of personal care items – as you were able to do before your meds were reduced – file a complaint

Here is a list of all the states’ medical licensing boards… most/all should have a complaint form on their website  http://physicianjobs.us/Medical%20Boards.htm

Here is website you are able to file your opinions of a practitioner’s care for pts   https://www.healthgrades.com/

If your prescriber explains that they are concerned about their license and their livelihood and that is the reason they are refusing to properly treat your health issues…  If they have reduced your pain medication to a point that you are no longer able to function as you once were before or have totally cut you off..  if you complain… what are they going to do… discharge you from the practice .. then you have a reason to file complaints about retaliation against them.

If you live in one of the 38 states that allow a single party recording… use your smart phone to record your interaction with your prescriber and/or staff.

25 Responses

  1. I am confused as to why we can’t Sue the Government for crimes committed against us which are in violation of the Constitution ? What about All Of The Oaths Taken To Uphold the Constitution ? Since When Is Breaking The Contract, Promise, and OATH Which Is What Is Required In Order To Get The Government Position To Represent The American People And Country, Not Worthy Of Lawsuits ? Why Have The Oarh ? Why Have The Constitution ? It’s illegal and Unethical To Torture Humans; or Is It ? All Of These Barbaric And Unnecessary Crimes Are Still Crimes. Where Is it Written That Any Elected Official Who Violates Their SWORN OATH, To Uphold And Protect The Constitution Be Allowed To Continue To ABUSE AMERICANS UNDER The CONSTITUTION ? We Have Rights, don’t we ? The Whole Thing is Laughable Then, And NONE OF THE LAWS UNDER OUR CONSTITUTION SHOULD ONLY BE Applied FOR “WE THE PEOPLE” In A Court Of Law, It’s Said ” THE STATE OF ….VERSES…WHO OWNS AMERICAN ? INALIENABLE RIGHTS FOR WHO ? WE NEED ALL OF THE NAMES OF EVERY PERSON WHO IS RESPONSIBLE FOR HARMING US, EVERY SINGLE ONE. YES WE CAN SUE ANYONE WHO COMMITTS A CRIME AGAINST US, ESPECIALLY WHEN THE MAJORITY RULES.

  2. Hi Steve,

    I am wondering if you would write a piece about how to write and even meet with local Government representatives. Although I do think personal stories are important, I think that they should be very short and to the point. Emails sent or presentations that are given should be supported by documentation to establish credibility. I believe it is important to be cognitive of the Politician’s time and in regards to this, the “less is more” concept is best applied.

    • I am not a big fan of calling, writing members of Congress… because it is all handled by staff and may never be seen – other than a number on a spreadsheet – by the member of Congress themselves. Going to DC to try and meet with a member of Congress and I have been there numerous times with national organizations that organized multi day meetings…. it is like trying to get attention in a “six ring circus”.. The lobbying industry spends 9+ million/day on the 535 members of Congress to get their attention and get them to listen – and do something that they want .. There is really only two things that members of Congress cares about VOTES and DOLLARS in their re-election fund.
      Don’t bother trying to contact a member of Congress that you are not in their district… If you can’t vote for them and don’t have $$$ for their reelection campaign … you are wasting both of your time.
      Each House member represents some 700,000 – 800,000 but there are two senators per state.. in California – most populous state – each Senator represents 20 million and in Montana – the least populous state – each represents some 600,000-700,000. Members of Congress are back in their district several times a year and will often make themselves available to meet with constituents individually – or small groups – maybe getting 15 minutes on a one on one basis. Keep your talking points to 2-3 issues… have a cover sheet with bullet points and other sheets with supporting documentation… take several copies.. there may be staff members LA (Legislative Assistants) there as well. Best to call DC or local office to find out when your member of Congress is going to be back in the district and if you can get an appt
      State Senators and Representatives may have similar processes… calling their offices you find out their processes and detail.

      • I agree that most people who write get a staff member rather than the Government official which is why I believe it is important to try to get a meeting. Writing a representative who is not one’s own rep is mainly as waste of time as you pointed out. The only time I got any response was when I sent emails regarding the legalization of marijuana and and a possible solution. I guess the topic was hot enough and some responded positively to suggestions while others felt they had to save people from themselves.

        I was fortunate enough to get a meeting with a Federal representative concerning the opioid issue but the Provincial rep ignored my requests. Turned out that that rep lost his seat in the recent election so I will be working to get a meeting with the new one as soon as he is settled in. I get that people may not be able to meet personally with their representatives even though they try repeatedly.

        I wonder if any would be open to meetings via Skype. One can always hope.

      • Thank you Steve! I really appreciate your suggestions.

  3. This is the first time I have seen your information. Has anyone started a class action suit against the FDA, CDC, or Dept. Of Health and Human Services or any other governmental organization. Maybe DEA? I would be interested in any information you could provide. Thanks

    • It is very difficult to sue the government they have protected themselves against lawsuits with sovereign immunity – and to be sued they have to AGREE TO BE SUED – the only thing that could be done is challenge the constitutionality of the laws that they are functioning under.. and all you get out of that is they SHOULD STOP DOING what they have done under the unconstitutional law..or… they just pass another similar law and you start all over again. There is nothing in our Federal/State system that mandates that any new law passed.. has to be constitutional. Some believe that the Americans with Disability Act passed in 1990 actually makes prescribers treating pain and addicts legal since they are a protected class but the DEA continues to go after prescribers when a couple of their pts OD’s… dumping hundreds or thousands of legit pts to the street from the practice.

    • Lori, people need to stop believing that a class action suit will happen. People need to file formal complaints as Steve has stated. This might be the only way to get a fair hearing. If the complaints r dismissed then appeals will happen. Eventually it will end up in a court of law where the country’s own laws can be used to support the complaints. There is no cost to file complaints but if the complaint is appealed several times there will be a low cost to take it to court. The money can be raised by ChrP patients who are willing to help by way of a Go Fund Me page. I believe it would be just court filing fees of a few hundred dollars

      • Filing fee $400 certified signature request to the defendants $18 per notary $10 per that’s what I paid out to file for Washington but it helped that my chronic pain friends helped chip in and they all did a motion to join the starburst lawsuits.
        $400 is how much it cost to file in federal/ district court across the country but there’s waivers you may get if you qualify for the filing fee.

    • Yes there is fourteen lawsuits in fourteen states going on right now and we’re still needing filers for the remainder of the state’s left to file. You can check out the website of Robert Rose Jr. Sickofsuffering.com or you can contact me I’d be happy to get you started.

  4. Steve, I agree. I am so frustrated at times. I put a call out here in Canada for people to join a Human Rights complaint and only got a couple of inquiries yet I know that at least a hundred people were informed.Out of those wanting to know more, only 1 other joined. In the end it was me, two relatives and one other Chronic Pain patient. We were all from Ontario and the Federal Commission determined that we would have to file with the Provincial Commission. They also informed us that we needed to be denied a service to file, so as a result, that left me unable to move forward. The other 3 were reluctant to file on their own and it was left at that.

    I recall Terri’s essay titled “Get On the Train or Get Out of the Way” and agree completely. It is frustrating to see people such as yourself, focus so much time and effort willing to help those who suffer yet many are afraid to move forward with formal complaints that actually have the potential to turn this around much faster than just speaking with politicians.

    I guess what I am doing is lashing out. Many of us are making enemies with our advocacy work and as demonstrated with the Human Rights complaint, there are people content to let others put themselves out there yet not effectively join in the fight.

    To unclog the facebook feed I began to unfollow groups where the same unhelpful posts are repeated over and over again. I see posts of pain patients complaining and one that really bothers me is the statement, “no one is helping us”. I have seen this statement on Twitter as well. This cannot be further from the truth and it runs the risk of losing the experts who have devoted many hours, likely stretching into months,to help us. Professionals who are busy with research, collaboration, writing, editing and finally publishing scientifically supported papers are the reason many other advocates have been able to move forward at all. I am guessing that this blog can take many hours in a week to run as well. To hear people say that no one is helping us is ungrateful. Especially if it comes from a person who is not willing to help themselves. We see tweets of patients asking for class action lawsuits chastising law firms for not spending what would be millions of dollars to defend them yet the same people are not willing to take steps that would not cost a cent.

    I am sure my comment might draw some heat but it is not geared to any particular person so please, active advocators, do not feel the need to defend your work. I get it and know the hours that is invested.

    Steve, I am hoping that your advice helps to nudge patients every where into self advocacy.

    • Oh I love it when people complain about our new POTUS or Congress, when 43.9% of registered voters didn’t vote in 2016!!!

      I grew up marching against Nam, racism, poverty, women’s rights etc in 60s. We must be “in your face”, making them squirm, be uncomfortable, expose them for the frauds. We have tried for 3 years to get our Congressman to speak with us at Town Halls. Sa8d, “just a bunch unhappy liberal women” who want DC to “pay for their abortionsand STDs”….yeah.

      So nag ppl to vote, vote, vote and stop being sheeple to RNC, DNC Tea Party or extreme evangelicals that rule Deep South…..we must develop our own values, dealbreaker issues etc.

      Great discussion.

  5. Pharmacist steve; Several good ideas, though one definitely gives me pause (as well as literal flashbacks); ” if you complain… what are they going to do… discharge you from the practice….”

    Yep, that’s exactly what happened to me. A few years ago I was verbally attacked by a nurse at my then-pain management doc’s office –I mean, psycho screaming, incredible name calling, emotional abuse to an astonishing degree. I was already in a desperate state, in such severe pain that I literally couldn’t breathe enough to remain fully conscious. Between lack of oxygen & profound shock I literally was unable to say a word to the woman. When I recovered from the shock, I was near suicidal (emergency call to my therapist).

    When I recovered sufficiently, a few days later I filed an ‘anonymous’ complaint against that FNP with the state nursing board. About a month later I got a call from the office explaining that I was fired from the practice. When I asked why, they said it was becuase I’d filed a complaint against one of their FNPs. “How did you know,” sez I, “since it’s supposed to be anonymous?” “We just know” they said. And that was that; I was out on my ear with no more medications, no carry-over to the next doc, nothing. All because I didn’t lay down & accept being visciously verbally abused by a nutjob nurse.

    I later learned that at least 4 other patients had lodged ‘anonymous’ complaints against the same nurse; all 4 patients were also kicked out of the practice. When I called around the nursing & medical boards, they basically said I had no guaranteed right to have a doctor keep me on, they can dismiss a patient for any cause, tough noogies for you (that last isn’t a direct quote, but the gist).

    That little experience did wonders for furthering my sense of utter powerlessness and helplessness. I need to re-read you suggestions & focus on the constructive ideas, and dredge up the courage to once again wade into the terrifying (to me) possibility of standing up for my need for true health care.

    • The Nurse’s State Licensing Board cannot take action against a nurse for a complaint filed anonymously as there would be no way to properly investigate this. It would be like a person reporting a crime against themselves anonymously and expecting the police to do something about it. The practice would have no trouble knowing who you were just from the incident described in the complaint. For anyone willing to go this route, to be effective, a formal complaint must be filed.

      • Wanita; It was a formal complaint; the nursing board got all my & I took all the required steps to register an incident with the nursing board. The complaint was supposed to be “anonymous” in the sense that the doctor’s office wasn’t supposed to know who filed it so the patient wouldn’t suffer retaliation, like whistleblower protection…yet they knew immediately & retaliated with the nuclear option i.e. instant patient ‘firing.’ Same thing happened to the other patients who filed formal complaints against the same nurse; the doctor’s office wasn’t supposed to know who we were, but they knew before we even learned the results of the complaints –which results were; nothing other than us being fired as patients.

        The fact that the incident(s) were so outrageous that the doctor’s office would know immediately what happened & to whom should give a clue that abnormal, extraordinary things went on…though apparently there weren’t abnormal there; merely hideous behavior treated as acceptable.

        The nurse continued to abuse patients at that practice for several more years before going elsewhere, no doubt to abuse patients there. The fact is that the doctor’s office clearly knew they had a mentally unstable, abusive nurse & did nothing about it except to fire any patient who had the nerve to try to do something about it.

        • Properly investigating the complaint would mean that the State Board would have had to speak with staff about the issue. Nursing Governing Bodies in various countries are merciless when it comes to abuse. Perhaps the Board was limited because they could not investigate thoroughly beyond the nurse’s version of events.To be successful one must be willing to file a complaint and carry it through fully. This is not the same as contacting media and being protected under Whistle Blower legislation. A complaint can be appealed in a court of law by the nurse in question or the accuser. The nurse who is accused is entitled to a defense. Remaining anonymous is not an option if one wants justice.

          • Wanita,
            Once again, I’ll attempt to explain to you that the complaint was not “anonymous” in the sense that you persist in clinging to; I filed the complaint with all my information & circumstances of the incident, and provided the nursing board with everything they asked for in order to make it “a full formal complaint.” I “carried it through fully’ to the extent the process allowed & required.

            The nursing board itself used the term ‘anonymous’ to me to make it sound as if the patient (me) would be protected from retaliation. However, I was not protected & neither were the other patients who filed equally full & formal complaints against the same person.

            I used the whistleblower analogy to indicate that (supposedly) there was a system in place to (again, supposedly) protect the patient, at which it failed utterly.

            I did not drag in the media & try turning it into a circus, with me in the center ring as performing bear. It was made abundantly clear that the doctor’s side held all the power. I also had a few decades’ experience at that point as a chronic pain patient and knew damned well that had I chosen to turn despicable behavior by a member of a pain doctor’s staff into a media event, I would have had no possibility of ever being seen a by another of the few doctors in the county who took on pain patients (if you doubt this statement, all I can say is, you haven’t had as much experience of being a pain patient). Moreover, making my status as a chronic pain patient would’ve been just begging for public condemnation & attacks; I’d experienced enough of those over the decades without broadcasting my status to the world.

            As to the claim that “Nursing Governing Bodies in various countries are merciless when it comes to abuse,” all I can say is that they were more than willing to give that particular nurse a free pass when it came to her own merciless abuse of patients, especially given that multiple formal complaints were filed against her. That, or that the Nursing board in my state &/or country is not nearly as “merciless” as your statement indicates. The nurse in question did not need to bother with any form of defense whatsoever; nothing was done to her & she suffered no repercussions & no detriment to her career despite multiple FORMAL complaints.

            I’m sure the nursing board probably intends (or possibly pretends) to be a neutral-ish body designed to weed out bad apples and sadistic nurses. In actuality, it shields at least some of those bad apples in a CYA fashion to protect itself & the profession from bad press. Perhaps if the nurse had physically maimed or killed me & the other complainants the board would’ve done something to indicate that it had patients’ interests in mind. One hopes.

    • I wrote a complaint to the Board of our hospital. My pain doc was there. It wasn’t the MD, but like you, his gatekeepers were insulting, hostile (it was 2008), they called in our RXs up to 3 days late and lie about it. I was told the MD was cutting his workload Bye!.

      So, these days, especially, it could be the death knell….
      My PCP wrote a RX for Tramadol, 30 days later was given UDT, got a false pos for oxycodone and she fired me. She knows zip about pain mgmnt, so I am gathering info on UDTs, Tramadol testing, false positives, and discharging pts based on that single event.
      I have not been outside in weeks, not far from motrin, heating pad, ice and tear soaked pillows.
      Good luck, see you in the Coliseum gladiators!

      • Maggie;
        So sorry to hear you’ve had to deal with not only having dire pain, but being at the mercy (as if there is any!) of a system designed to keep pain patients prisoners of circumstance. I read a while back of a doctor who’d sexually abused patients for decades, & while reading the story I wondered why patients had followed him from practice to practice. Then (rather far down in the story) it said that he was a pain management doctor. Instantly, it was blazingly obvious why patients stayed with him & did not complain about the sexual abuse; they were hostages, and if they had tried to complain, they would’ve lost access to treatment at best, been labelled as drug-seeking addicted criminals at worst & thus been unable to have any hope of ever getting treatment from anyone else. We are pretty much helpless at defending ourselves from accusations from doctors intent on maligning us.

        I hope you are able to get relief somehow, and we all are able to get justice in this climate of propaganda-driven hysteria.

        I can’t get the image out of my mind about the Coliseum…tho I keep seeing us as naked Christians against hungry lions….

  6. Steve you have kept me well informed and knowledge is power. I cannot thank you enough. You have made a difference in my life and I’m sure others! Thanks again TRULY.

    Ken

  7. How about coming to my webinar on Thursday and learn why the attacks on opioids are a waste of time and money because they aren’t the cause of addiction that the government has claimed they are. Get that out in the public knowledge, and they will be more sympathetic to the cause.
    Get the details of the webinar at http://www.doctorsofcourage.org.

    • I am sorry that you and many other doctors have been put through hell while practicing in good faith. If I had not read the stories on Doctors Of Courage I would not have known the suffering you all have endured.

    • It is a heroin/fentanyl crisis, courtesy of the US GOVT.
      Afghanistan farmed 385 hectares of poppy in 2001, pre-invasion. By 2008, it was approx 6000 hect. By 2012, up to 9000 hect, and found in 80% of world’s heroin. The US refuses to eradicate poppy crops, it brings in 43% of their GDP….and one Fed said, “they are SO poor we don’t want any more suffering”… WHAT THE????? But 25000+ Americans dying is NOT SUFFERING?

      Once again the War on Drugs means the Feds allowing massive lots of drugs because it fits a dark agenda of the govt and use Americans as collateral damage!
      Vote em all out!

  8. Exactly what I was planning to do!
    Thanks for tips Steve.
    When our health is being affected by the severe reduction of dose after being stable for years?
    It’s time to ACT!! My bp is hard enough to control besides being caused by Doctor, that to me is negligence.
    I hope everyone else does the same!

  9. Thank you for putting those tips out there for us. I hope every person that reads this post is encouraged to continue or begin being proactive for change.
    We, as Chronic Pain Paitents, should feel encouraged to support one another amd unify our voices amd actions that we will not accept nor let inhumane and cruel (lack of) treatment continue. We have an inalienable right to be treated with respect and dignity and receive appropriate care. To have a quality of life.
    This is our modern day Spanish Inquisition/Salem Witch Hunt and the sheer absurdity boggles my mind and it is totally frightening how pervasive this anti-opioid panic has become in our medical society.
    Thank you for aiding us to have a voice.

    **How we choose to manage our Chronic Pain should be our choice.
    **There is no room for the government in a responsible doctor/patient relationship.
    **Suicide is not Pain Management.

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