Chronic Pain Survey Showing Gaps in Care

Chronic Pain Survey Showing Gaps in Care

By Ed Coghlan.

A survey is underway to gauge the quality of care that chronic pain patients are receiving. The survey, prepared by Terri Lewis PhD and being promoted by the National Pain Report and others, is receiving brisk response.

Dr. Lewis, who is a pain patient advocate, is using the survey to present at the July 9 FDA Public Meeting for Patient-Focused Drug Development on Chronic Pain.

“They need to hear what patients are experiencing,” she said.

What is she finding out thus far?

Most of the respondents are over the age of 40—80% of them are women.

“This is prime working and family care age for both men and women,” she pointed out. “The loss of earnings capacity and independence for both sexes in this age group. It puts families into conditions of economic insufficiency and creates crisis conditions for which few are prepared.”

Denial or delay of diagnosis figure prominently in respondent comments. 

“This is of great concern as the current administration changes eligibility criteria for health and welfare benefits,” Dr. Lewis said. “There are so many other issues that arise from this – children are thrust into the role of caregivers for impaired parents, individuals and families become isolated by the effect of managing injury and illness, social networks shrink reducing visibility and understanding by the community at large.”

The vast majority of respondents report a profile of illnesses and injuries that meet the definition of Multiple Chronic Comorbid Conditions as defined the Center for Medicare Services. These data are reported down to the county level and grouped as 1, 2, 3, 4, 5, or 6+ chronic conditions that occur together.

“Among respondents, the majority have documented that they are receiving care for between 4 and more than 6 chronic conditions. Many have offered information about the treatments they have received that have failed,” she said.

 With this analysis, it will be possible to identify experience trends in receipt of alternative medical approaches for specific medical conditions alone or in groups. 

“Identifying what works or doesn’t work is important to the national discussion,” she said.

While nearly one thousand people have filled out the survey, she is hoping for many more to participate. If you haven’t already done so, you can by clicking on this link. Dr. Lewis will close the survey on June 17 in order to give her and her team time to tabulate the results in advance of the July 9 meeting.

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Authored by: Ed Coghlan

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Steven

Let’s cut to the chase. Some of the chronic pain patients aren’t even going to be able to make it to July 9th because they will have had to take their own lines for a lack of opiates that previous to this we’re available and or treating his or her conditions. As it is now pain medication is being taken away arbitrarily from the people who need it to stay alive. No one wants to talk about it but these are the facts and they are indisputable unless you use their carcass to point out they have a drug problem so we need to cut them even further off. They had a drug problem alright. It was that they didn’t have enough drugs. Too little too late I would say for the tens of thousands who have already gone before us and the hundreds that are going each day. Those of you who voted for change 9 years ago certainly got exactly that. Change. I just feel sorry for the people who will be getting sick in the future and we’ll have nothing to treat pain with. There’s no reason for the hospital to be there anymore except for diagnosis. We certainly don’t treat Pain any longer which is ironic since it is the number one disability in this country. What is wrong with our legislators? They seem ignorant about the very laws they’re passing in the impact that they will have on our citizens.

Kathy Spiers

I filled out the survey. I am a 66 year old female who had to take early retirement at age 62 because chronic pain from 30+ years of arthritis had taken a toll and I missed work more than I worked. Sadly, the disability system takes years for approval—if you are lucky enough to be approved so I, literally, chose POVERTY over remaining at work. Initially, my pain was helped considerably by Tramadol and Norco but after more than 10 years using them, I no longer get decent pain relief. Because of this insane war on chronic pain patients, I am terrified of telling my dr of 12 years the truth–my pain meds aren’t even close to relieving my pain. I need stronger pain medicine but if I ask, I could be labeled a drug seeker. Thanks, CDC Guidelines for the absolute hysteria you’ve created about opioids that has ended any chance I have for a decent remainder of life.

Sandy M

I would love to participate in this survey, however, I have a smart phone thst doesn’t have the apps needed, so I will use my desk computer before that date. Thank you so much for helping us.

Laura Phillips

People with CRPS truly need their medications. Our pain can get like cancer pain and childbirth pain only there is no escaping it ever without assistance of medications. We can’t help it we have this Disease but we desperately and despairingly do not want to suffer. We have suffered horrifically as it is with continual non stop 24/7 pain and need our medications to survive unless a cure can be found. I can definitely see why it is labeled the”suicide” disease. Just not fair for any human being to have to suffer and fight every day and night with this????? What are we supposed to do?????

Susan L.

I completed the survey, but, as at least one other commenter has said, the survey was VERY poorly designed. Is that really the best the FDA can come up with? If so, I weep for our future.

I expect that, like Congressional hearings, the survey is just an empty gesture to appear like they’re taking all points of view into consideration when in reality their mind is already made up. Interesting how last decade’s “crisis” was meth, today it’s “opioids” (what the hell is an “opioid” anyway? What happened to “opiates”?). Tomorrow it will be Ritalin/Adderall (hint: see the survey). Sigh.

Thanks for caring. But the survey is VERY poorly designed. It allowed me to waste 3 hours pouring my heart out in the answers to what would make things better. Then told me to shorten my answers when I tried to submit. Reformat it so you can’t waste time typing then delete it. I almost got put back on the street for doing this survey instead of chores. Please fix it so people who do good to sit up and type don’t waste time.

Steven

I want to fess up about the survey. It was a good test for my abilities as they’ve declined with the opiate withholding. I’m sorry to say that it’s too difficult for me. I honestly wanted to take the survey but when I determined that I’m so far gone that I couldn’t I just sat and cried for an hour. I’m in so much pain that I simply don’t know how long I can go on. There aren’t adjectives enough for the people that are torturing us and going to cause our demise. But remember this we have a just God they will pay for this dereliction of Duty. I was thinking today at least at the Humane Society they put the dogs down at the end. We don’t even have anybody to help us with that. I’m so tired of my family believing all all the propaganda out their spelling us out as some kind of monsters. We are people. I feel sorry for all the people that will be getting degenerative diseases in the future. They will have nothing. At least I got 16 years thanks to opiates more than I would have. This will probably be my last post. God bless you all and thank you NPR for giving us at least a virtual community

Holly

Thank you Dr. Lewis!

Skeet

 I have had RSD/CRPS for15 years
Most people suffering from chronic pain are not drug addicts, just imagine a drop of water dripping on your forehead, a broken bone, a needle stick, the worst  cramp you could imagine or a nasty burn, by it’s self no big deal. Now imagine any of it that persist 24/7 for years, it is torture. I believe it is worse than most types of torture done on a human being around the world and most countries have outlawed it’s practice. With proper medications we are able to deal with the pain but with this war on opiates patients are being denied proper dosage and some of them have been denied medication all together. Now it is plane to see our own government is torturing people, if it’s not torture, what would you call it?
They have clearly shone that they don’t care anything about the chronic pain community.
People with chronic pain that have fallen through the cracks are desperate and desperate times call for desperate measures.
It’s sad but in that desperate time nobody in the medical field wants to help because of the FDA laws and the DEA raiding Dr’s offices and in some cases Dr’s being arrested. All they see is someone seeking drugs and not someone seeking help.
So we come back to desperate times call for desperate measures and all that is left is Suicide.
We with chronic pain are not mentally ill, we are not drug addicts we can become desperate to ease the pain. There is a fix for this, let Dr’s be Dr’s not government agencies trying to be Dr’s. My question to the FDA or DEA is why have you condemned an entire class of people that are so vulnerable?
Most of the overdoses are from illegal drugs, and you the FDA, DEA are forcing people into illegal drug market,  what a wonderful thing you have done! ——–NOT————-

Steven

How could the FDA possibly not understand you’re killing me man! They’ve taken our pain medication away to the point that some of us just can’t make it anymore. It’s genocide of the sick and they know it.

Toni

There really is no care now for pain patients. Just expensive treatments that do not work and cost us money we do not have. No meds, nothing. Just a sad life.

Cindy

Hi. Newbie here. I live with a gal egos I tremendous pain. Lots of opiates indeed….
She won’t survive this mess…
What are they doing bout heroin addicts?
Creating MANY MORE IS 100% REALITY.
Now here’s a real problem.
Walmart only dispensing 500mg of opiods per day.
Who’s next?
CVS WALGREENS YOU BETCHA.
My roomie wants a platform to speak…
Where can I direct her?
THX

David Cole

Thank you Dr.Lewis for your dedicated service to the chronic pain community, there are no words that can Express for my gratitude. The Injustice that’s been done to pain patients is catastrophic. In a country that won’t torture terrorists, why are they torturing or elderly disabled and Wounded Warriors. It’s beyond belief. I’d send you a million bucks if I had it, but I don’t so I’m sending a BIG HUG!

Hayden

About 1000 patients that filled out the survey as I read and understand the complexities of substance abuse being blamed on our opioid prescribing physicians and their patients unfortunately does not come anywhere close to representing the actual numbers of patients so adversely, negatively healthwise and psychiatrically effected by a forced tapering of opioid medication as “THE” last effective therapy for a reported by the CDC some 10 million or more patients. Dot/gov can only use numbers and statisitcal information as should be to base any regulations in an issue and concerning the issue of drug/substance abuse that is inappropriately called an “opioid crisis” placing the majority of substance abuse causing death on pain management physicians and patients. I TRULY appreciate what Terry Lewis has and is continuing to do to prove that by FAR, the majority of established pain management patients do not divert, abuse, or allow our medication to be used by anyone other than the intended patient. The CDC has developed a well executed plan and states that the “guideline” for opioid prescribing physicians is only a suggested method of dosage and prescribing practice which is NOT…..Truth. I know factually that prescribing physicians, mainly pain managment specialists were required to attend meettings held by DEA officials and were literally thretened that IF the doctor prescribed and exceeded the suggested dosage of opioid medication as per the opioid conversion chart, there would be severe consequences includung physician license “surrendering” and if not so then why did every “medical board” in all the states “agree” to accept the CDC “guideline” for opioid prescribing physicians and are spending millions of dollars with computer programming such as “scrubbers” in the attempt to control and track every single opioid prescription written? Thank you also ED for your platform for the patients so badly effected with the “policy” to be able to share truths about the “opioid crisis” that is helping to reveal and expose what is so badly affecting literally millions of patients with no other form of therapy to manage painful disease, non correctable injury and even unneccessary surgery that is far less than an effective treatment or therapy to actually help the patient manage over the top lifetime pain management issues whjch re far worse out of control than before the CDC “guideline” was authored and forced upon pain managment patients.

Lance

I found out recently that I am to bet cut fro 200 mg to eventually 30 mg. .. I am at 100 mg right now… I don’t know if I am going to make it, I have to stay in bed most of the time.l can’t do to much…what’s going to happen to me?i understand the problem,but I have to be sacrificed?why don’t they care about us?

Rich Reifsnyder

Rich R. Myself and Millions Of Disabled Chronic Pain Patients and Veterans have jumped through every hoop,to do the proper things to get and keep our Pain Medication which we have been taking for years responsibly.Beside all the suffering from our pain medication being drastically decreased or cut off,we are stressed,depressed,and then the Media calls us all Opiod Medication Addicts.After all this Suffering and Suicides from Millions of CPP,S and Veterans I have one question.When is an Ethics Committee going to investigate the CDC,DEA,PROP for the lies,fraud,politicians investing in addiction centers for self interest over this disgusting scam?I haven’t seen the Media address the lies and inflated numbers by CDC/DEA yet.Every single person that works for the CDC/DEA that’s involved in this should be fired and prosecuted immediately for this torture and incredible Inhumane suffering of our millions affected.AG Jeff Sessions should “tough it out”and start an investigation on the biased committee who wrote the Opiod Guidelines,and the torture,Inhumane suffering and deaths the Guidelines caused.Iam 61 and been taking Opiod Medication since 1998,responsibly.To sum it up this is the most Inhumane disgusting scam against our weak disabled veterans and chronic pain patients I have ever seen in my lifetime.I used to be proud of my country, not any more,for what this country is doing to wounded veterans who can’t even get proper treatment for pain and fighting for our freedom.So disgusting and sad.Happy Memorial Day!!!!

Tabitha

What works is what should be used. Common sense right. Instead we are being asked to suffer more to compensate for heroin addicts . The whole mess is a money grab and a sham. If they wanted to save lives they would stop the heroin and end the war on Chronic pain patients. I hear every day what they are doing to take away pills fro. People who need them and I hear NOTHING about what they are doing to stop heroin. It’s a ridiculous joke that we are paying the price for as kite and more politicians hop on the bandwagon to limit my ability to function in the world . We need a law that protect Chronic Pain Patients from the hysteria and headline seeking politicians. What works for some is long term opioid treatment . It’s worked for me for 20 years but every pill they take away takes away a piece of.my life and I have had enough. Chronic pain patients protect act NOW

Dave

Thank You Dr. Lewis for your dedication to people who live with pain every hour of every day.

FormerPatriot

Glad to see Dr. Lewis getting responses.
As of now, the FDA docket has received only 87 responses. I applaud those that have filled out the survey please don’t stop there. PLEASE COMMENT ON THE DOCKET. Whether Dr. Lewis has one thousand or one million patients in her survey will not affect the amount of time she has to present our case in the July 9th meeting.

If you that are reading this TRULY want this NIGHTMARE to END,
this MIGHT be your ONLY CHANCE to be HEARD by someone with ACTUAL POWER!!

FOR THE LOVE OF GOD AND YOUR FELLOW HUMAN BEINGS, PLEASE COMMENT NOW!!!!

Rebecca

FEEDUP WITH MEDICAL INSURANCE AND THE BIG PHARMACEUTICAL

MEDICAL INSURANCE DENIED MEDICINAL MEDICINE. MY PAIN MANAGEMENT DR. HAS PRESCRIBED NABILONE FOR THE PAST FOUR YEARS. THE DOCTOR WOULD PREFER THAT I TAKE CANNABIS OIL TO AVOID THE PHARMACEUTICALS, AS I HAD 3 STROKES IN 2014 DUE TO MEDICINE THAT WAS PRESCRIBED.

THIS IS MY DELEMIA. THE MEDICAL INSURANCE COMPANY, WILL HAVE TO PAY DOUBLE THE AMOUNT OF NABILONE BECAUSE MY DOCTOR INCREASED THIS PRESCRIPTION. WELL TO MY SURPRISE THE BIG PHARMA HAS A SHORTAGE AGAIN OF NABILONE WHICH LEADS ME DUMB FOUNDED.

SO THIS IS SHOCKING,BUT TRUE MEDICAL INSURANCE WOULD RATHER PAY SEVERAL HUNDRED DOLLARS FOR NABILONE AS APPOSED TO $ 90:00 A MONTH FOR CBD CANNABIS OIL.

This is a very well-designed study. It seeks out folks with a wide variety of conditions that either cause pain, or complicate the treatment of pain. It’s best feature is that every page of it makes room for essay answers, as well as multiple-choice answers. If one’s condition seems to fall somewhere in between one of the multiple choices, one is free to elaborate in essay format.

I particularly like that feature, because it gives future researchers guidance on how to improve the test and administer it to more patients.

At some point, there will come an admission that political authorities have grossly harmed tens of millions of pain patients, because they misunderstood the causes and treatment of addiction. However, at present, political policies are created in a virtual echo chamber, where the voices of those harmed by the policies are never heard. Real healthcare reform has to start by collecting feedback from patients about what’s working, and what’s failing to work. Merely guessing at what patients need, then forcing us to accept what the guesswork produces, is harmful. Ignoring the evidence of that harm, compounds the harm.

I predict that in the future, questionnaires like this one will become a standard feature of any hospital visit, because they show where there is room for improvement. But we’ve got to start somewhere. Volunteering to fill this one out on your own, is a great way to help solve this problem.