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.

[Tuckamore]

You're right Sandee none of us know the other side of the story. There are certainly incompetent physicians out there as I mentioned that may prescribe carelessly. But as you said we all need to be our own advocate. Addiction can happen to the best of us, with out without the "help" of a physician. Addiction is also a disease just as is chronic pain.

No one makes an alcoholic drink yet there are alcoholics, again a disease and certainly no ones fault. In my opinion blaming the physician is like blaming the bartender for serving the alcohol? I never ordered a drink and had a bartender warn me that drinking ti could cause an addiction to alcohol. But than I don't claim that my opinion is correct. It's just my opinion. And off the subject.

It is a sad fact that ppl divert their narcotics. And as stated it is one of the largest factors that physicians are suspicious of their patients. Indeed there are chronic pain patients that divert their narcotics for money to pay the fuel bill. There are others that have no good reason. The statistics are staggering every where.

If nothing else kolo you have certainly opened up a lot of dialog.

[sandee1818]

I am in Florida and know for a fact that oxycontin sales for a dollar a mg. therefore a 20mg pill will cost twenty dollars and so forth.
I have spoke with the Sheriff's dept on more than one occasion regarding this. I have witnessed Pt's selling their prescriptions outside the doctors office as well as the pharmacy and it makes me livid. There are so very many people who can't get the help they need because of this kind of behavior. I call the authorities and inform them anytime I see this. If I just sit back and let it happen then I am no better than the ones who are diverting their prescriptions for money.
Just in Florida alone the stats are staggering and this is only based on the ones that are caught!
We all have to be aware and do what we can to stop this.

[sandee1818]

As I told you I think you will do great things for the chronic pain patients. It really doesn't matter how much you as long as you do contribute as every little bit helps. If we all sit back and do nothing then how can we expect change. Everyone can contribute in some way no matter how small.
I applaud you for taking the infinitive to help our cause.
I believe that there are two sides to every story here.
There are those who blame their doctors for their addictions but then we do not know the whole story so we can't really know what they went thru or if the doctor was wrong, Not on a basis that everyone who blames their doctors for their addiction is wrong as there are the cases that are an exception.
I do very much believe that one has to be their own advocate and not expect the doctor to tell you everything you need to know. In this day and age there are to many avenues to turn for answers. If you are prescibed a medication it is up to you to talk to your pharmacist and to do the research on the drug. The doctors can not be expected to do
everything. They have alot of responsibility and their role in prescribing a medication is limited when it comes to explaining the drug itself. This is what your pharmacist is for.
With the Internet and all the other possibilities it is inexcusable in my opinion to blame the doctor for not being more of an informant on a certain drug.. As your own advocate you have the responsibility to
do the research of what your putting in your own body.
I think the doctors and patients each have a set of responsibilities and each should take care of those that are assigned to them.
Doctors have intense rules to follow and we as Pt's have to understand this. In turn the doctors should be aware of what we face each day being in pain and having to learn to deal with it. I have a friend who is a PM doctor that  got into pain management because he broke his neck and so he found out first hand what it was like to endure the constant pain and have no compassionate doctors willing to understand. He is a great PM doctor because he has been there and knows what we face.
Perhaps having doctors get more education would benefit the doctor as well as the Pt.
Having a great relationship with your doctor is great but it is not always possible as some do not see the same doctor each month. This leaves the doctor with feelings of mistrust as he does not really know his/her Pt well. It is not always possible to see the same doctor every month so that leaves building trust with each doctor you see which is hard to do.
The contracts cover the doctor very well but does not really cover the Pt and issues they may have, a contract with the doctor that also covers the Pt is well in order.
This bill of rights your working on is great though I have seen some before. It will take the doctor and Pt's to abide by them and this is where the problem comes in.
If the doctor or Pt has issues that are not really covered in the bill of rights then it leaves both the Pt and doctor in unsecured areas and may lead to the Pt being dismissed.
Take for instance a Pt has a drug test and they are  legit and take their meds as prescribes but the test says otherwise. The normal thing that happens is the Pt is fired and they then have this in their record and then have virtually no where to turn for help.
There needs to be something in place that will protect the innocent who are taking their meds and still catch the ones who are diverting.
The laws need to protect the doctor as well as the Pt. The way things are now we have virtually no rights and if we are blacklisted for one test that was wrong we are then out of luck.
What can we do to ensure that the legitimate Pt''s get the help they need and also catch the ones who are diverting. I believe this is the main goal between doctors and Pt's alike.
We as chronic pain Pt's do not want people who are selling the medications we need any more than the doctors want these drugs on the street. We both pay the price for the individuals who do divert their prescriptions and should try and work together to make it hard for them to do so while helping our cause too. If we can weed out the diverted then we as chronic pain Pt's have more credibility and therefore more compassion and understanding.
I have alot of suggestions I have just been limited on time the past couple weeks.
I hope the comments your getting will help you in helping our cause.
Thank you for taking the time to do this:)

[Tuckamore]

I hear your anger and frustration. However I respectfully disagree that physicians are "getting ppl addicted"  Yes ppl become addicted but generally not through the fault or neglect of their physician. Are their rare cases that a physician prescribes narcotics carelessly? I am sure there must be. They are human too and make errors and certainly there are just plain incompetent physicians out there. But that is not the norm.

We have to take responsibility for our self. We all can read. We all have media access and hear the numerous reports of substances abuse and neglectful physicians. Some of us are more predisposed to addiction of any substance while others are not. It is beleived that much of it is in our gene make up, a hereditary factor if you will.  

It's also true that our bodies become dependant on narcotics. There is a difference between addiction and dependence. Maybe I am naive but it my experience not only have I heard many a physician warn their patients about the dangers of narcotic usage, it's on the pharmacy hand outs. If we become addicted I just can't stretch it to blaming the physican.

Just my thoughts.
  

[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

[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