A national Pain Crisis Protocol is imperative

There should be a pain crisis protocol for dealing with patients who present to the ER or urgent care with significant pain that is not related, or is disproportionate, to obvious pain causes (such as trauma, fractures, infections, heart attacks, organ disease, etc. — the issues that ERs are used to handling.)

The main function of the ER is to identify and stabilize conditions which pose an immediate or proximate threat to life or function. Ongoing conditions are referred to primary or specialist care for follow up.

Crises in ongoing conditions are clearly outside this realm. No wonder patients with pain flares get called drug seekers. Of course they’re seeking drugs. Their condition causes terrible pain crises at random times, often outside office hours, and their only option at those times is to go to the ER seeking the medication they genuinely need.

It puts both the ER staff and the patient in crisis into an intolerable position. A Pain Crisis Protocol, generated at the national level, could eliminate that problem almost completely.

It would provide guidance for further investigation and appropriate treatments (including patient-specific treatments) for the many pain crises that are not traumatic or otherwise obvious, such as flares of CRPS, fibromyalgia, lupus, RA, certain forms of blood dyscrasia; arthritis exacerbation; unexamined or ill-examined organ or CNS compromise; and so on — all things that do require ongoing specialist treatment and thus tend to leave ER staff ill-equipped to deal with, but which occasionally require immediate care for episodes of crisis.

It would also provide ways to move past the “you must be a drug seeker” mindset, which is prejudicial and unhelpful to all concerned. It would create useful ways to move patients out of the blame-the-patient path and into a constructive treatment path where pain gets treated as pain, addiction gets treated (not bullied or abused, but treated) as addiction, and physicians’ appropriate treatment decisions are protected from the political hysteria around the use of pain medications.

Many of these painful diseases require customized crisis management, because response to pharmaceuticals can vary so widely from one patient to another in these already fragile, destabilized systems.

Rationally, then, this would require specialists who treat people with these conditions to provide crisis-management protocols for each patient to the patient’s home ER in advance.

Since many specialists resist planning for such crises, specific guidance on this matter would lift a needlessly vicious burden from patients who suffer from diseases for which flares are an inevitable, if unpredictable, feature.

Moreover, if a patient must be admitted to an ER outside their home area, the admitting ER can retrieve the necessary patient-specific protocol from the home ER at any hour via phone and fax. Again, this would provide appropriate treatment without imperiling the patient with false, undefended, and prejudicial diagnoses or potentially criminalizing the treating physicians for using politically sensitive medication.

The Centers for Disease Control (CDC) is going through another round of tortured logic around narcotic medications and pain treatment. Never in modern history has federal policy driven so much of medical protocol. (Informed dissent would be welcome. Looking forward to being wrong about this.)

The fallout in terms of patient care has been horrific, while addicts remain less treated than ever before and doctors are so hemmed in by inappropriate limitations on care that they can be criminalized for being responsive physicians.

It’s very odd.

Nobody wins — except the professional dealers, who don’t need to follow legal processes to access their product and have a growing pool of potential customers, many with a legitimate un-met need.

So, since the CDC is now so ready to get involved in the physician-patient relationship, it may be time to do so in a constructive manner. Creating a coherent protocol for pain crisis management, which provides forward guidance for ER staff past the fatality-eliminating process, safety for patients with a legitimate need, and appropriate diagnosis with rational intervention for addicts, would be wise. The money and lives saved would pay for it in the first year, if not sooner.

Relevant links

The current CDC proposed guidelines for narcotic use in the outpatient setting: http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0001

CDC guidelines for public comment: http://www.cdc.gov/other/public-comments.html

Selection of CDC articles on narcotic policy (opens new tab): CDC search for ‘narcotic policy’

How to contact your elected officials in the U.S. government (opens new tab): Contact your elected US officials

In politics as in medicine… Speak up, because there is no guarantee that they are paying attention to your reality.

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Teaming with other orgs? (With annotated list of online CRPS resources for patients and professionals)

One of my compatriots posed interesting questions on one of my online groups: why don’t we work with larger and better-funded orgs? Why do we have no chapter-based organizations for this disease?

I strongly suspect that there are several issues intertwining to create this lack:

  1. Until recently, this disease was so poorly understood that there were no stable diagnostic criteria, let alone a stable name. This means there was no coherent banner to gather under. Coming from over a decade in health care, most of it as an RN, I can definitely say, as a matter of practical politics, that the medical community will NOT come together over an ill-defined disease. Without the legitimacy the medical community brings, it would be mighty hard to find any major or stable funding sources for an illness. It’s pretty much impossible to get more than a passing nod from larger orgs with well-defined goals.
  2. It’s still believed to be terribly rare, but in fact it’s hideously underdiagnosed. In studies where people are followed post-injury or post-surgery by professionals trained in CRPS diagnosis, it’s been noted that 7%-18% of those patients develop CRPS, and that’s just in the studies I’ve seen while looking for other data. That’s not too darn rare at all! (Naturally, with prompt and skilled treatment, there is a high rate of remission in these early diagnoses.) This level of under-diagnosis is even more worrisome for established orgs to deal with. Doctors, when acting en masse, are conservative to the point of being reactionary, and don’t welcome uncertainty.
  3. Nobody with pull advocates for CRPS, or at least nobody with the clout to make funds follow. (Paula Abdul is not widely seen as a leader, although she has many gifts, and — sadly — MacGyver has been in reruns for years.)
  4. Only in the last 10-15 years or so has CRPS treatment been functional. Until then, the most usual process was to drug us into silence and wait for us to die, which — with care — typically took 25-30 years of progressive weakness, pain, fragility, and debility. Such a flaccid population is not interesting from the outside. Sad, but true. Therefore, we only have about a decade of CRPSers who can function and advocate and ever do anything besides just try to cope. (Only a few enlightened doctors did anything differently. Pediatric treatment led adult treatment by a couple of decades, I suspect because they had parents without CRPS insisting on functional treatments; these kids then grew up.)
  5. Due to the twinned issues of ignorance about CRPS and poor communications technology, it’s only been about 8-10 years that we have had a truly networked society of CRPSers to refer to. Many of us, who’ve had it for longer, still remember how close we came to ending it all out of sheer isolation, fear, and desperation, but now we have allies at the end of the keyboard.
  6. Last but by no means least, CRPS IS EXHAUSTING. Pain is exhausting. Weakness is exhausting. Dysautonomic responses are exhausting. A cardiovascular system that can’t quite figure out which way is up is exhausting. A brain that keeps firing false signals is exhausting. It’s just exhausting. It’s worse than a full-time job with full-time overtime and no benefits. It’s worse than medical school. Worse than law school. Worse than both combined, topped by a never-ending case of the flu and being followed around by a thug with a live cattle prod. We don’t get much of a break for other work, though by gosh, some of us sure do try!

You’ll notice that successful orgs are run by our loved ones or doctors, rarely by CRPSers themselves. It takes a whole lot of energy to run an organization. (This is why I aim for full remission in my search for a cure. I want to have the physical/physiological slack to do the work I really intend to do.)

I think we’re getting on for time to have these kinds of alliances and that kind of localizable organization. I can certainly see why it hasn’t happened until now, but the situation has changed.

There are a number of organizations that recognize CRPS as something they’ll include under their umbrellas, like the (now defunct) American Pain Foundation and Women In Pain. I wouldn’t call them alliances, because we certainly aren’t equals; at this point, we’re ugly stepchildren in the world of medical movements, because we have a disease that is hugely ignored, incredibly complex, and desperately exhausting.

However, there is a future. (There is always a future.) This future includes the fact that we are better organized than we have been until now, better informed than most providers, and can pool our efforts to accomplish far more together than any of us could do alone.

When reading this list, keep in mind, these orgs are not competitive. Each org focuses on its main mission, and does it well (unless stated otherwise, and then that is my opinion.)

It’s important to leave that struggling, pushing mentality behind; we’re all in this together, and we all have something different to bring to the table. Together, we are stronger than we are alone… At times, our self-described allies may need to be reminded of that — tactfully, of course.

The more well-run orgs there are that focus on this disease, the merrier! We need to be able, collectively, to provide many points of entry and to respond to a variety of learning styles, expectations, and needs.

As far as I know, there is no decentralized, patient-run organization which provides a blueprint for opening chapters and simplifying the work of educating and informing local citizens, providers, news outlets, and legislators. While a distributed org is a great idea, up until now, it was a luxury we could not afford. Perhaps it’s time to open up and broaden our reach. (There is a Facebook group, RSD/CRPS Research and Developements, which provides striking postcards with links to current articles on CRPS to distribute to doctors, which is an important step.)

Here are the organizations I know about, and what I know about them. I’ve indicated which are CRPS specific, and which are broader orgs which admit CRPS under their umbrella. It’s not exhaustive, nor should it be. I’m including only what I think would help, and mentioning a few that won’t in order to point out what qualities to be wary of.

CRPS org: Reflex Sympathetic Dystrophe Syndrome Association (RSDSA)

This is probably the most famous of the CRPS online resources, although it still uses the deprecated name, RSD (see Point 1 above.)

RSDSA is driven by physicians and archivists. They are a clearinghouse for medical information and conventional diagnostic and procedural issues. They’re highly reputable in that area, and they don’t even try to do anything beyond that. They provide funding to update CRPS diagnostic criteria as medical understanding of the disease improves.

Great place for medical articles about CRPS to take to the doctor, and essays to help you have some idea what to expect.

CRPS org: CRPS org: American RSD Hope

The people behind this site clearly work hard on developing and maintaining content. In a field as fast-moving as neurologic anything, this is pretty impressive. Their drop-down menus are excellent, and the material they cover is exhaustive. They do a generally good job of being fair and discussing all sides of a topic with reason and clarity. One of the founders has had CRPS for roughly 40 years, which blows me away.

While RSDSA is good for things to throw at your doctor, RSD Hope is a good place to spend time for yourself and with family and friends. Highly recommended.

CRPS org: CRPS UK Clinical Research Network

This is a research collaboration between a number of United Kingdom National Health Service Trusts and British universities, including Cambridge and Southampton. The medical pedigree is nearly bullet-proof.

They are heavily oriented towards professionals, except for the part about recruiting patients for studies. They only have about 300 enrollees, so if you’re a Briton with CRPS interested in participating in a study (not just meds, but demographic and behavioral studies too, including a current study on relationships between partners when one has CRPS) then do contact them.

CRPS org: Complex Regional Pain Syndrome – New Zealand

Patient-run website, with a Links page including treatment centers in NZ and online support groups for New Zealanders. There are videos of several CRPSers, so for those who benefit from that, it’s perfect.

Caveat Emptor: We’re about to get into wobbly territory. Proceed with caution.

CRPS org: International Research Foundation for RSD/CRPS, a.k.a. International Foundation for CRPS & RSD, a.k.a. RSD Foundation

This is run by a physician in Florida who specializes in high-dose ketamine infusions. Much of the site is devoted to flames against those who disagree with his views.

The diagnostic criteria he lists are 12 years old. The intellectual and emotional biases in the site are too blatant and bitter for me to recommend the site generally. If you’re already committed to high-dose ketamine, then the videos may be useful.

Now, let’s look at some organizations that seem to make room for CRPS under a wider umbrella of relevant issues. If any CRPS org or individual were to approach them, it seems like the very first thing we’d need to do (with the exception of the first on this list) is let them know what the disease really is.

Umbrella: USC Center for Pain

My excellent doctor at USC is also head of USC’s Pain Center. The Pain Center is a charitable org which has an annual walk/run/roll in October called Quench the Fire (http://www.quenchthefirerun.org/). I hear it’s good fun, but it’s too early in the morning for my dysautonomia. There is info on the disease and they are working on a study about how the way we talk about pain affects how others see us. Send your friends and family over — better yet, send your enemies and detractors, because they’ll come off looking terrible but yielding good info about how they think: http://painnarratives.adamswenson.net/index.php

The org is credible and informative, but its brief is somewhat limited and its physical location is highly local.

Dr. Steven Richeimer has a video of his hour-long presentation on CRPS for medical students at http://keckmedia.usc.edu/Mediasite/Play/8d9f15df5f2e4cc59278a0d14ed5cf791d

Umbrella: American Foundation for Pain (AFP) — neutralized

The AFP was well known, was reputable despite/because of close ties to the pharmaceutical industry, and had solid contact with legislators, which it used to advocate for better treatment, more funding for treatment, and less in the way of punitive actions against prescribers. This has been confirmed in a tragic way, because they were thrown to the wolves over the last round of legislation against narcotics.

It went like this… Rather than holding the drug companies responsible for releasing misleading info, this org was scapegoated and had its funding pulled, because it got 90% of its info, and funding, from pharma — as does any congress-critter you care to name… so the politicians could act self-righteously shrill about narcotic abuse, without actually doing anything that costs the industry. That’s American politics. The companies are untouched; the charity gets rubbed out.

Meanwhile, there is no more funding for addiction treatment than there was before, which would be a rational and proven approach to the problem. And yet, there is less treatment for pain, because those of us in chronic pain who have flare-ups requiring emergency treatment “fit the criteria for drug-seeking behavior” and this wrongheaded approach has criminalized patients. [NB: Of course we’re seeking drugs! We go to the ER when we really need them! That’s appropriate!]

Lesson learned: I now lean away from American sources that are too close to legislators, even though the American science is so good, and is so depended on by governments and orgs around the world. American politics is toxic for the chronically ill, as are British politics now.

Umbrella: American Pain Association

Provides physician training and certification courses on chronic pain. Very corporate in its approach.

Umbrella: National Organization for Rare Diseases

Very helpful charitable site with info on state-by-state insurance, help with bills, legislation, medical summits, professional training, and support for patient organizations. Sadly, they still use the term Reflex Sympathetic Dystrophe and include CRPS as an alias, the only CRPS/RSD org they recognize is RSDSA (no surprise there — the director is incredibly good at networking), and — most problematic of all — specifically describes CRPS as simply a disorder of the sympathetic nervous system. Wrong, wrong, wrong. The first word of the current name is “Complex” for a reason.

If anyone would like to approach them with updates and information, please do. Given the link to RSDSA, you’d think this had been done already, but hey, look at *their* name…

Umbrella: Women in Pain

Women In Pain has episodic successes with legislation and a photogenic public face (a real asset), so they are certainly worth a look. They they list articles regarding women in pain, list resources for pain and for women’s health, have an online guide for approaching your state government and other intimidating bodies to make a point, and they have done some work on legislation.

Umbrella: NIH National Institute of Neurological Disorders and Stroke

This is funded by the U.S. federal government and, in this pro-science administration, is doing pretty well. It is primarily a research organization and a clearing house for information, with the specific task of translating research into usable treatments.

Their description of CRPS is not bad, although it focuses on peripheral symptomatology and changes, with no reference to the central nervous system issues or core, organ, or metabolic issues. They also have the outdated idea that kids under 5 don’t get it.

Umbrella: American Chronic Pain Association

I mention this because it’s an obvious choice, not because I think it’s a good point of entry. Says it includes CRPS, but some of the basic materials completely ignore neuropathic/neurogenic pain. The site reads like it was written by a hospital administrator, and their info for professionals was posted in 2007 — and apparently never looked at again.

This might be a good org to approach with updated info and better integration, if anyone is interested in contacting them and creating an ongoing dialogue. I have no idea if that would go well, but it may be worth trying by someone more diplomatic than I am.

A note on how old the info should be

Be deeply suspicious of older protocols or professional training tools, with CRPS. The most recent, reputable, international diagnostic guidelines are from 2013, funded by the RSDSA. (Full text here: http://onlinelibrary.wiley.com/doi/10.1111/pme.12033/full .) The IASP criteria, which are widely accepted at least partly because they are sufficiently vague and old as to let the insurance companies opt out of paying for a lot of effective treatments, date to 1994; the RSDSA has channeled funding for periodic updates, of which the “Budapest criteria” from 2003 is the most famous, but they are not necessarily accepted by insurers or providers.

A note on faith-based orgs

My focus is relentlessly secular and heavily scientific in searching for info and support sites. This is partly due to the cultural cross-compatibility of science in medicine, which is key, and perhaps partly due to an idyllic childhood in a region that’s now so torn up with religious strife that it’s hard for me not to see a long-term agenda lurking under every burning bush. I’m not equipped to evaluate faith-based orgs.

However, for those with religious or spiritual leanings one way or another, there is generally an org to be found which supports people in pain or with chronic illness (if not with CRPS particularly) and which follows your particular path. If that helps you, I suggest you look into it, whatever your faith, and please link faith-based orgs which provide solid, useful information in the comments below.

I can say, with absolute certainty, that there is tremendous value to having a strong inward life — whatever you call it, and whatever form it takes.

A note on Anglo-centricity

You’ll have noticed that these are all English-language sites. I don’t have sufficient command of any other language to assess sites in other languages. I’d appreciate suggestions, ladies and gentlemen.

As yet, as far as I know, there is no decentralized, patient-run organization which provides a blueprint for opening chapters and simplifying the work of educating and informing local citizens, providers, news outlets, and legislators. Who would like to start putting one together? I’ll help, but I’m working on this publishing and online art project…

Diagnostic guidelines for different countries

US

IASP-derived guidelines used as the basis of payment and treatment are available to physicians and insurance adjusters, but not patients or the public. I can’t find them online for free. (Now what does that tell you…?)
Complex Regional Pain Syndrome: Practical Diagnostic and Treatment Guidelines, 4th Edition
http://rsds.org/pdfsall/CRPS-guidlines-4th-ed-2013-PM.pdf

UK

Dated 12/2011, due for revision in 2016:
Diagnosis and management in adults: Concise guideline
https://www.rcplondon.ac.uk/resources/complex-regional-pain-syndrome-guidelines

Netherlands

Available in Dutch and English, with a version for professionals and a version for patients, dated 2006: http://pdver.atcomputing.nl/english.html
Bonus material here: a 5-language foldout card with very basic info (from their guidelines) for emergency treatment:
http://pdver.atcomputing.nl/sos_pages_en.html

Japan

In 2010, the Japanese published a refinement of the IASP diagnostic criteria that better served the Japanese demographic. The paper describing these refinements is available for purchase here:
http://www.painjournalonline.com/article/S0304-3959%2810%2900182-X/abstract

Korea

I looked for specific criteria used in Korea, where a lot of active research is being done on diagnosis (thermography, scintigraphy), characteristics (HPA axis and affective/social changes) and treatment (temporary immune shutdown), but they seem to rely on the Budapest criteria, established in 2003. These are considerably more useful than the original, rather loose IASP criteria, and have been the basis for every revision of the diagnostic criteria since. There have been several revisions; the most recent was in 2013.
A Korean patient site is here: http://www.crps.co.kr/web/index.php

I looked for diagnostic criteria specific to other countries, but my language and my search tools aren’t good enough to find them, if they exist.

For better or worse, English is the common language of medical science training and practice over much of the world. This makes it easier for Anglophones to find the information they need, but it presents a real problem for those who have trouble with such a strange and wordy language.

Links list

Organizations, in the order listed:

  1. Reflex Sympathetic Dystrophe Syndrome Association (RSDSA)

    http://rsds.org/index2.html

  2. American RSD Hope

    http://www.rsdhope.org

  3. CRPS UK Clinical Research Network

    http://www.crpsnetworkuk.org/index.php

  4. Complex Regional Pain Syndrome – New Zealand

    http://crps-nz.org

  5. International Research Foundation for RSD/CRPS, a.k.a. International Foundation for CRPS & RSD, a.k.a. RSD Foundation

    http://www.rsdfoundation.org/crps.html

  6. USC’s Pain Center

    http://helpforpain.com

  7. American Pain Association

    http://www.painassociation.org/

  8. National Organization for Rare Diseases

    http://www.rarediseases.org/

  9. Women in Pain

    http://www.forgrace.org/women/in/pain_home/

  10. NIH National Institute of Neurological Disorders and Stroke

    http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

  11. American Chronic Pain Association

    http://www.theacpa.org/

Diagnostic guidelines:

Bonus links:

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Serious business: reporting bad doctors, saving future patients

Most doctors do good. They do lots of good, all the time, every working day. They’re not perfect (nobody is) but they do far more good than most of us have a chance to.
Moreover, most specialists were drawn to their specialty because they thought it was the coolest and most intriguing use of their time and skills.

It’s helpful to realize that it doesn’t so much take brains to get through med school, as the ability to work really hard on your own behalf. Moderate intelligence is enough, if you can be a solid student. It’s just a lot of hard work, with a guaranteed career at the end of it. This might explain why so many docs are simply mediocre, and most of the time, that’s really all they have to be. The trick is knowing when that’s not enough.

No profession — in fact, no large human grouping — is exempt from the reality of the bell curve. And this means that, while a few physicians are truly outstanding, a few are truly vile; a  few are famous, and a few are totally invisible; most are somewhere in the middle.

Almost all docs are honestly doing their best, and when they give up (which sounds like, “It’s all in your head” if they’re chicken, or “there’s nothing more I can do” if they’re not) or screw up (which sounds like, “whoops… it’s not my fault” if they’re chicken, or “I’m truly sorry, I’m still only human” if they’re not) it’s because the science, their imagination, or their intelligence is not always up to the challenge.

And that’s fair. Our science is vast but still inadequate to match reality, and not everyone is a genius, not even all doctors. We have to be realistic.

A very few are exceptionally smart, exceptionally diligent, and exceptionally good at communicating effectively with patients. They are at one tip of the bell curve, where miracles happen and people beat the odds.

A very few are exceptionally egocentric, have an exceptionally good act, and are exceptionally good at communicating with administrators (which is a special skill.) They are at the other tip of the bell curve, where others’ losses and suffering increase exponentially while the doc’s career blossoms in the adulation of those who don’t need them for care.

A few docs are so insulated from consequences and so accustomed to power that they become something distinct: they do more actual harm than anyone outside Congress or the judiciary can manage, and since they can’t be voted out, they need to be stopped some other way.

It’s rare, but, sadly, it happens to those hardest-pressed to stand up to them — and their obvious allies.

Those of us with rare and complex diseases are bound to hear of them, because rare and complex diseases are prone to develop “cults of personality” around physicians and institutions that get a good article written about them because the subject itself is cool.

These vile docs are a tiny, tiny minority, but they do exist, and sooner or later, we have to deal with them ourselves or aid our friends who do.

In a litigious country, it’s important to know what the agendas are. So let’s be clear about one thing, before going further with this article.

  • Those of us with CRPS and related conditions are not vindictive, we are desperately in search of effective care.
  • We typically exhaust all reasonable means of resolution, long after any normal person would have given up in frustration and despair. 
  • So, by the time WE are ready to trash a doctor or an institution, they have earned it — in spades.

The merely careless, ignorant or foolish are damaging, but still not worth our very limited time and energy.

When you really have to stop a doctor, you’ll know.

While I do believe in evil, I don’t think anyone is past saving… but in order to redeem themselves, some people have to lose what they hold most dear. They have to hit bottom.

In rare cases like this, where the lives of others are fodder for the cannon of someone’s willful and soulless arrogance, I have no trouble with that. Let ‘em hit.

How does that happen?…

By them losing enough of what matters most to them, that they have to either change or fail. Bad doctors in rarefied positions have huge egos and huge paychecks, and in practical terms, that is what matters most to them.

Egos and paychecks are tied together by reputation.

If you’ve been a victim, you can help re-adjust their reputations to something more in line with reality. This could really aid their personal growth. (Nice way of putting it, eh? Still true.)

If you’ve discussed it online and you’ve kept your paperwork, you’ve done most of the work already. It just involves cleaning up what you wrote to your friends, adding a few links, and laying your hands on the documentation created and collected along the way. I’ll write more about that soon, but for now, you can start with what you can easily get.

So here are some ways to do the most good:

  • Report the physician/s to the licensing board in your state.
    You can’t do much about what happens after that, but it goes on record and makes that doctor’s/institution’s future screwups harder for them to do damage control on. And there WILL be future screwups.
  • Review the physician or organization online.
    These review sites get read by patients, doctors, and doctors’ staff, so patients are warned by your record of consistent stinkery and — bonus! — a really stinky review often gets back to the physician via other physicians, providing “reputation readjustment” among the very people they most value. It sounds cruel, but hitting them in the ego is second only to hitting them in the pocketbook in terms of the salutary effect you can have once constructive efforts have been exhausted.
     
  • Submit letters to the editor in that doctor’s or institution’s area.
    These are followed by the PR departments of hospitals, government agencies and universities (this means that university hospitals will have a double dose of PR departments.) Docs who make the institution look bad, cost money. Once they look like they’ll cost too much, they lose their jobs… And, at higher levels, find it very hard to get another one.

In the end, maybe it’s not about whether you can get what you needed in the first place. Sometimes, it’s about protecting others, your cohorts in need. There are a lot more of them than there are of either vile doctors or great ones, but at least let’s steer them away from the vile. You can save lives this way :)

Links

…With surprisingly little effort, now that you know where to find all the links you need to get started.

How to report damaging and dangerous doctors

AMA FAQ on reporting physicians:
http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/frequently-asked-questions.page
Don’t be intimidated by the prim, imperative language. You’ve probably done almost all of that already.

Contact info for physician licensing boards in all 50 states:
http://www.ama-assn.org/resources/doc/ethics/state-medical-boards.pdf
This is who has the authority to revoke a vile physician’s right to practice. A consistent record of vileness can’t be overlooked once it gets to this level.

How to review your providers online

This site is well known and widely used. Even though it’s generic, physicians themselves have told me they fear bad reviews here:
http://www.Yelp.com/

Doctor-specific review sites:

http://www.vitals.com/doctor/rate
Reputable. You need to register.

http://www.healthgrades.com/
Find the doctor, click “About This Provider”, look under “Patient Satisfaction,”  and click “Fill Out a Survey About [doctor's name]“.

http://www.ratemds.com/
Looks rudimentary, but it’s been picked up by several national news outlets. Also, it has the perfect URL for its mission, so it will grow.

http://www.healthcarereviews.com/HealthcareRating.php
Seems relatively new. Could be worth it, if it saves one more person.

http://www.change.org/
Ideal for institutional-level stinkiness. You can set up a petition and this org will do most of the legwork to get others with relevant interests to sign it. This then gets mailed to the institution with aaaaaall those names on it. Also, if it’s a good story and the news folks are awake, it can hit national TV. Now THAT’s pressure!

Letters to the editor
- Guidelines for writing letters to the editor: http://www.pnhp.org/action/how-to-write-an-op-ed-and-letter-to-the-editor
Most important advice: keep it focused, human, and snappy. Cite relevant recent news (on the institution, the doctor, the disease, health care, etc.) so it feels like part of the larger reality (which it is.)
- Links to major news outlets’ Letters pages, with submission guidelines: http://www.ccmc.org/node/16179
- Or search “letters to the editor [your state or city]” for more relevant links.
These not only come back to the hospital administrators, but are followed by politicos. It’s a good way to make a big stink, especially given a good paper trail and a link to your petition. If you’re lucky, it could trigger some investigative journalism.

You can also research investigative journalists in your area, and pitch your story as an idea for a project. This is more time-consuming than the other options, and not all of us have that time or can make those contacts.

Not the last word

Once a reputation has been trashed, it’s very hard to recover… And sometimes that’s the only way to keep these hateful, [expletives deleted], predatory, self-serving, [more expletives, really vile ones, also deleted] from hurting others.

It would be helpful if more doctors stepped up to the plate and helped corral their own. It’s this damaging minority of trolls who stain the image of all doctors.

Any physicians who know of means to do that, it would be tremendous if you’d let us know… If only to assure us that some effort is being made. Even after roughly a decade as a nurse and another as a patient, I know of no mechanism that still lets you police your own — so if it exists, it’s awfully coy. It’s too easy to feel abandoned by the profession when we wind up in the hands of someone like this, and see the colleagues near them just shut up and knuckle under. If there were a wider pool of colleagues they had to answer to, it would help us to know that.

If you’re in the awful  position of needing to use this info for yourself or a loved one, please comment and let us know how these methods work for you.

Best of luck. May all your future doctors be good, capable, and really know their jobs.

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Refocus on what works: In memoriam

Debbie died yesterday. She was a never-failing source of encouragement and intelligent support on one of my key online CRPS support groups.

She died on the table, while undergoing a medical procedure. I don’t know exactly what it was, and given my respect for patient confidentiality, it’s none of my business.

She’s the first person to die of my disease, to whom I felt personally attached. Needless to say, it’s sobering as hell.

I’ve written about the need to attribute deaths from this disease correctly. I’m preparing my own final papers. These thoughts are nothing new.

But today, they are biting deep.

I’ve recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately — and quietly — become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.

Debbie’s death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.

I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I’m going to discuss what works, whether or not it’s FDA approved, pharmaceutically profitable, or adequately studied.

Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn’t mean the modalities don’t work.

It means the studies need to be done. Period.

Where I understand the mechanisms of action, I will explain them. Where studies don’t exist, I’ll detail what should probably be explored.

But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.

I will find a better way. I will find a way that works. I’ll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it’s up to me, and others like me, to convince them of that.

I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.

For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.

No more silence. It’s too much like consent or, worse, collusion.

I do not consent to the deaths of my friends.

With my eyes now open, I’ll no longer collude.

Let’s find a real way out.

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