WED/RLS Protocols

For everything and anything else not covered in the other RLS sections.
jul2873
Posts: 402
Joined: Thu Nov 15, 2012 7:32 pm

WED/RLS Protocols

Post by jul2873 »

After reading the excellent book Restless Leg Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic by Robert Yoakum, I see that there are definite protocols to follow in prescribing drugs for this disease, and that opioids are recommended for certain severe cases. I am wondering what the weight of these protocols is.

I know that there are established protocols for treating many diseases. For example, when my daughter-in-law had a certain type of breast cancer, she was put on herceptin, since that drug had been proven successful for treating Her2++ cancers, her type (and she's doing fine now, thank God).

Here's my question: Could her doctor have said, "I don't believe in using that drug, even though it is now the recommended drug for this type of cancer. I won't prescribe it." Wouldn't he be opening himself to a lawsuit?

So, can doctors treating WED/RLS say, "We don't use opioids at this clinic. We don't believe in them," even though opioids have been shown to be the only effective drugs for treating certain cases of WED?RLS? Are doctors free to ignore established protocols? Or, perhaps the question is, how do protocols become established?

I'm asking because, reading through postings, I'm horrified at the suffering people are experiencing, and their doctors who feel free simply to say, "We don't believe in using those drugs." Can't they be sued for malpractice? I'm pretty sure they could be sued for refusing to follow established protocols for other diseases. Why not WED/RLS? Is it because the protocols are not yet that firmly established?

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: WED/RLS Protocols

Post by ViewsAskew »

jul2873 wrote:After reading the excellent book Restless Leg Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic by Robert Yoakum, I see that there are definite protocols to follow in prescribing drugs for this disease, and that opioids are recommended for certain severe cases. I am wondering what the weight of these protocols is.

I know that there are established protocols for treating many diseases. For example, when my daughter-in-law had a certain type of breast cancer, she was put on herceptin, since that drug had been proven successful for treating Her2++ cancers, her type (and she's doing fine now, thank God).

Here's my question: Could her doctor have said, "I don't believe in using that drug, even though it is now the recommended drug for this type of cancer. I won't prescribe it." Wouldn't he be opening himself to a lawsuit?

So, can doctors treating WED/RLS say, "We don't use opioids at this clinic. We don't believe in them," even though opioids have been shown to be the only effective drugs for treating certain cases of WED?RLS? Are doctors free to ignore established protocols? Or, perhaps the question is, how do protocols become established?

I'm asking because, reading through postings, I'm horrified at the suffering people are experiencing, and their doctors who feel free simply to say, "We don't believe in using those drugs." Can't they be sued for malpractice? I'm pretty sure they could be sued for refusing to follow established protocols for other diseases. Why not WED/RLS? Is it because the protocols are not yet that firmly established?


I think it's multiple reasons. You raise points many of us have asked ourselves - and many times!

In terms of reasons, one is that the drug your daughter took likely had clinical trials associated. There are few (and no large scale one) associated with opioids. Dr B told me that he didn't think we'd likely get any large scale trials simply because no one can benefit financially. Without large scale, well-designed studies, doctors don't hear of these things unless they stumble upon one of the smaller studies or read one of these books.

Once doctors graduate, they instantly are behind in terms of medical knowledge. They are practicing, not studying. To keep up to date is an incredible and daunting task. If you have four or five patients every day with something, you likely stay up to date. When you have a few a month, not so much.

Attitude is part of it. We have a WAR on drugs in the US and doctors who want to ban the use - yes, I said BAN THE USE - of opioids except in certain classes of patients. This is to protect the roughly 7% of people who have addictive personalities. Many doctors are terrified of opioids. I had one doctor who said she was OK with it - leery, but OK - as long as she worked with DR B. But, when we tried to change things and I went through multiple opioids in a few months, she freaked and stopped seeing me - with no warning AND with no refill. If I hadn't had had a stash, I'd literally had no medication.

My guess I've missed a few....but that's a start as to why.

To me? It should be criminal!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
Moderator
Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: WED/RLS Protocols

Post by Polar Bear »

My opioid is at the very bottom of the scale - the thought of being without it would be sufficient to have the white coat brigade coming to get me.
And that in turn is enough to make me look like a drug seeker/ drug dependent/addict.
But my attitude would only be because it is the only drug that I know I can rely upon.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jul2873
Posts: 402
Joined: Thu Nov 15, 2012 7:32 pm

Re: WED/RLS Protocols

Post by jul2873 »

Thanks Ann and Polar Bear. I understand the fear of opioids, and I understand that many (most?) doctors are not up on current treatment protocols for RLS/WED. I think the "ignorance of the law is no excuse" means, however, that doctors have an obligation to keep up on current treatments and I'm guessing that a failure on their part to keep up would not protect them from a malpractice suit.

I think it's because of the fear of opioids that a malpractice suit would be great. Apparently some doctors are driven by fear, so let's push them from the other side with fear.

The difficulty is the lack of solid research--as you point out, Ann--and I don't know how to get around that. It may take some good researchers who are victims themselves of RLS/WED to step up and do it.

Still, if I were in the position of having gone through the DA's and other treatments, and at the point where only opioids are providing relief, I think I would consider filing (or at least threatening) a malpractice suit if my doctor refused to prescribe them. I know: easy for me to say! But this situation is so unreal--doctors refusing the only treatments that provide relief.

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: WED/RLS Protocols

Post by badnights »

I wish someone would do it... would sue for malpractice. But what WED patient has the money or energy? I know - if I wasn't getting opioids, I wouldn't have the energy to complain about it! Life is brutal.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: WED/RLS Protocols

Post by ViewsAskew »

badnights wrote:I wish someone would do it... would sue for malpractice. But what WED patient has the money or energy? I know - if I wasn't getting opioids, I wouldn't have the energy to complain about it! Life is brutal.


I've definitely thought about it. But, as you say Beth, given my limited mental (and emotional) resources, it took all I had to find a doctor both times my existing doctors refused to continue treating me. Other than complaining here, all of my time was spent making arrangements to fly to California and figuring out how to make it until I could get there.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: WED/RLS Protocols

Post by rthom »

Also what judge is going to rule in favor of increasing the opiod use.....

jul2873
Posts: 402
Joined: Thu Nov 15, 2012 7:32 pm

Re: WED/RLS Protocols

Post by jul2873 »

All good issues. As far as the financial issue, clearly we would have to find an attorney who does it on a contingency basis, which I think is how most malpractice suits are brought anyway. The attorney absorbs the expenses and, if wins, gets a hefty percentage of the award. Otherwise the attorney gets nothing.

Good point about judges. We'd need a jury trial.

And we'd need someone retired to file the suit, I'm guessing, because of the time required. But picture this: the plaintiff--someone with severe enough WED who has already augmented on DA's and not gotten relief from the other treatments--having to sit for hours at a time at the plaintiff's table, unmedicated. Ha! What a scene! The judge ordering the plaintiff to sit down; the plaintiff explaining that that is impossible; having a doctor testify that the only way the plaintiff will be able to sit for such a long time is with opioids, etc. etc.

I'm retired and I have the time, but I don't want to go through the DA/augmentation/other drug scenario, since the kratom is working well for me at this point.

Polar Bear
Moderator
Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: WED/RLS Protocols

Post by Polar Bear »

jul2873 - Without wanting to make light of our difficulties - your courtroom scenario would make a fabulous base for a movie !!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jul2873
Posts: 402
Joined: Thu Nov 15, 2012 7:32 pm

Re: WED/RLS Protocols

Post by jul2873 »

The last think I want to do is make light of the suffering so many of us are going through. Yeah, a movie, but even more all of the newspaper stories describing what is happening. Surely there is a great lawyer somewhere willing to bring this suit. Plus I am sure there are other people in pain who need opioids, and are now being deprived of them.

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: WED/RLS Protocols

Post by ViewsAskew »

jul2873 wrote:The last think I want to do is make light of the suffering so many of us are going through. Yeah, a movie, but even more all of the newspaper stories describing what is happening. Surely there is a great lawyer somewhere willing to bring this suit. Plus I am sure there are other people in pain who need opioids, and are now being deprived of them.


It's a huge issue - I get that we need to be careful with opioids, but we've thrown the baby out with the bathwater. That resolution a group of doctors brought last year was terrifying. I don't remember exact details, but seem to recall it prevented all by terminally ill people and cancer patients from getting any opioids. Really!!!!!! All those chronic pain sufferers, along with many other VALID reasons to use it.

The issue all came about because GPs prescribed those moderate opiates as if they were aspirin - and gee, people got addicted and people died. Duh. We had a long conversation about it when it happened and many of us were extremely angry (and worried).

It's hard to keep things in the middle - we tend to swing back and forth between extremes (and don't do a good job learning from either).
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: WED/RLS Protocols

Post by aveerik »

I wonder if there is an attorney out there that has WED that would take this on?

The whole issue with opiates is so stupid. If you are getting opiates from a doctor they will be in control of your use. I know some doctors make their patients sign a contract stating they will not doctor shop(get multiple rx's from different doc's), you will take only as prescribed, and I am not sure what else but I have heard of a few people having to do this. My sister takes Xanax .05mg for her wed/rls and has for 20 years, she is 47. When her insurance changed she had to get a new doctor who straight out said I do not prescribe Xanax for this condition. My sister said well you will be for me, I have no side effects and I can't just stop taking it. So her doctor made her sign a contract which was fine with her. It is malpractice to do this to patients.

A huge problem with trying to make a malpractice claim is that you have to find a doctor to testify on your behalf and doctors never want to go against another doctor no matter how bad the claim is.

Maybe I can talk my daughter into becoming an attorney but that wouldn't help us for quite some time.

jul2873
Posts: 402
Joined: Thu Nov 15, 2012 7:32 pm

Re: WED/RLS Protocols

Post by jul2873 »

My son-in-law is a V.P. in a big, national insurance company, and tells me that lawsuits work like this. If a malpractice suit is brought against a doctor, the insurance company lawyers look at it. If it looks like the plaintiff has a good case, the insurance company settles out of court. They only go to court when it looks like their doctor did nothing wrong, and they can win.

So the question is what the lawyers for the insurance company would think of the lawsuit. Since the protocols are clear--and I haven't seen any competing protocols that say opioids should never be prescribed--my guess is they would settle out of court, and put out a directive that their doctors had better start following established protocols.

I asked my s-i-l what if the insurance company said that since the doctor had not followed established protocols they would not defend him, and he said there was "no exclusion for stupidity." In other words, as long as the doctor had not committed some kind of fraud, he would be covered, and the plaintiff would get money. (Of course, he said, that doctor's insurance premiums would then go sky-high).

It's something to think about. I hadn't realized, until talking to him, that the big decisions in these cases are usually made by insurance company lawyers.

Of course, we would need a really good plaintiff--someone who had augmented on at least a couple of the DA's, not gotten relief from other non-opioids or had such horrible side effects they couldn't continue them, and who had severe RLS.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: WED/RLS Protocols

Post by rthom »

Great news, it may be easier than otherwise thought. Now just to find a person willing with the right criteria, sounds really promising though. Thanks for sharing that, boosted my spirits a bit.

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: WED/RLS Protocols

Post by badnights »

Even settling out of court, someone could ensure the media were aware. In fact, the media would love it: "Insurer admits doctors should prescribe more opioids!". Some would put a terrible spin on it, but others would give the real story. Then hopefully more and more physicians would realize this disease is legitimately treated with opioids and withholding them defies their Hippocratic oath.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Post Reply