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MRSA Disclosure Legislation: Act Now!

The other day I blogged — again — about MRSA and other hospital-acquired infections and asked you to contact your legislators to ask them to pass legislation to require hospitals to disclose their infection rates.

These superbug infections kill 100,000 Americans per year, and infect almost 2 million others — all unnecessary because controlling the spread is really only a matter of “clean” — washing hands, sanitizing instruments — all those things your mother taught you about cleanliness. However — through laziness and carelessness, these superbugs continue to spread, maim and kill. Requiring this type of disclosure is truly the only way hospitals will get serious about stopping their spread, because disclosure will allow patients to choose — meaning — disclosure will affect a hospital’s bottom line.

One of my friends and co-advocates, Julia Schopick, sent me this link to make it easy for all of us to contact our legislators to make this kind of legislation happen! (Thanks, Julia!).

There are 16 states that already have legislation in place. You can get a master list of states that have enacted infection-rate legislation here.

Twelve more states are in the process of considering legislation to require disclosure. If you are a resident of any of these states, it’s VERY IMPORTANT you contact your legislators and/or your governor (see below — we’ve made it easy for you*.) Here are those states: Arkansas, Delaware, Georgia, Hawaii, Indiana, Kansas, Massachusetts, Michigan, Minnesota, New Mexico, Oregon, Texas, Washington, and West Virginia. To get more details about the actual bill numbers and their status, link here.

Consumer Reports folks — the not for profit that researches and helps consumers with their decision-making. They have devoted a website specifically to stopping hospital-acquired staph and other infections — StopHospitalInfections.org

* If your state is one of the ones that is thinking about legislation — OR — if your state is not yet considering this life-saving step, Consumer’s Union has made it easy for you. Just link to their online form — the letter is already written – you just need to identify yourself and what state you live in — and they will submit the letter for you!

It’s easy to do your part to save lives. It takes only a few minutes. Please do it today!

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If you want to read more about hospital acquired superbug infections such as MRSA and c.difficile, you can find my other reports on the subject here.

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Of Groopman, Misdiagnosis and Dr. Phil

Dr. Jerome Groopman holds a chair at Harvard Medical School, writes for the New Yorker Magazine, and has just published a book, How Doctors Think. I haven’t read it yet, but I’ve read at least a dozen reviews. What I most appreciate is that Dr. Groopman — a doctor held in high esteem by his peers, and uber-believeable by patients — may have created enough of an uproar that the medical profession may finally have to reckon with its malignancy — misdiagnosis.

Based on his own experience, where six different doctors gave Dr. Groopman four different diagnoses for a problem with his hand, Dr. Groopman acknowledges that doctors often do not listen to their patients, do NOT have “total knowledge”, are influenced by all kinds of factors that have nothing to do with the actual patient in front of them, make choices based on whether they like or don’t like a patient, and that they MISDIAGNOSE between 15 and 20 percent of the time.

Scary stuff. In a way — comforting. At least a relief of sorts. And perhaps a fresh start.

First — scary because that means 15 – 20% of patients are being treated incorrectly. Most will suffer. Some will die. Loss will be felt by patients, their families, and their pocketbooks.

Comforting — because it means that I’m not alone in my misdiagnosis odyssey. Groopman saw six doctors for four diagnoses. My story involved 13 doctors (including all the pathologists that reviewed my biopsy) and I got four different answers (or non-answers) too. And I’m not even convinced I ever did get the RIGHT answer.

A relief — because we can’t change what we don’t acknowledge (thank you Dr. Phil) — and this is acknowledgement by a highly regarded professional of a dirty little secret that has traditionally gone ignored. Groopman cites a study that shows doctors don’t listen. In fact, on average, they interrupt a patient within 18 seconds of asking “why are you here today?” Those doctors who still believe they have “total knowledge” (Groopman’s description) — in my experience, the majority of them — are going to find themselves confronting this reality — at last — or else.

And that’s where the fresh start comes in. Hopefully, in some ways, this will give those doctors the “permission” they need to see reality — and begin partnering with their patients instead of preaching to them. (And we all know what publicly happens to those preachers who pretend they are something they are not!)

Sharp patients will take Dr. Groopman’s best advice. Continually ask questions, and be a partner with your doctor. Ask questions like “What else can it be?” and “What other ways can it be treated?” and if you feel like you and your doctor aren’t communicating well? Then get another doctor.

We’ve all known it. Many just don’t want to believe it. Doctors are HUMAN, just like the rest of us. Or, as Grampa used to tell me, they all pull their pants on the same way the rest of us do.

Don’t let your health suffer because you’d rather believe doctors have “total knowledge.” We know FAR more about our own bodies than our doctors do. We just don’t have the right words to describe the problems, nor the education to determine what needs to be done to fix us. Getting the right answers requires BOTH our doctor’s expertise AND our own.

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Want to read more about Dr. Groopman’s book? Link here for the NPR interview. Link here for the TIME Magazine review. Or read Dr. Groopman’s own synopsis at the New Yorker.

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MRSA Tipping Point – Almost There

It’s that dirty little secret that hospitals don’t want you to know about… but it looks like we’re almost at the tipping point. Soon you may be able to find out what your local hospital’s infection rate is — and you can choose whether you want procedures to take place in that hospital or not.

MRSA (pronounced “mer-sa”) is just one of the superbugs — a germ that has figured out how to be stronger than any of the drugs developed to kill it. It can wreak havoc (2 million cases in America each year) — and KILL the people who acquire it (100,000 deaths of Americans each year), especially surgical patients and the elderly who are at greatest risk. To give you a sense: three of my friends have been admitted to one hospital here in Central New York state since the first of the year. All three have acquired MRSA. One died. The other two will battle the infection for the rest of their lives.

Joyce Howard Price wrote more about it in last week’s Washington Times. So far, 16 states have enacted laws requiring hospital disclosure. Twelve more are considering that legislation. When passed, hospitals must make their infection rates public so patients can choose whether they want that to be a factor in their smart patient decision-making.

Why is this important? If infection rates go public, then hospitals will be more diligent about stopping its spread. From washing their hands more often, to sterilizing equipment — just cleaning rooms! — there are usually infection-stopping policies in place, but they are often ignored. Lazy, too busy, not paying attention — sorry — but no excuse is good enough. The one thing that will make hospitals be more invested in cleaning up their acts is if they know it will negatively affect their bottom lines — and that won’t happen until patients see what an abhorance their infection rates are.

If you have an opportunity, contact your local legislators and tell them you would like to see legislation that would protect you and your loved ones by making hospital infection rates public. This kind of public service could one day save your life, or the life of someone you love.

(To see previous blog posts about hospital acquired infections, link here.)

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Medical Error Insurance?

My world as a patient advocacy consultant* exists in two camps, both of which influence each other constantly.

Camp #1 is the world of medical errors and misdiagnosis. That’s the world where my career began — although not by choice, certainly. It’s the world the Institute of Medicine referred to when it reported that infamous statistic that between 44,000 and 98,000 Americans die each year from a medical error or misdiagnosis. It’s the world of shattered lives, deaths of babies and children, loss of loved ones and lifelong debilitations.

The other world is of my own making — a reaction and result of landing in the misdiagnosis camp. On a daily basis, as I am reminded through reading or being contacted by someone who has been affected by camp #1, I quickly run to Camp #2 — my advocacy, assistance, advice, writing, broadcasting — the work I can do to help anyone else stay out of Camp #1.

Because I’ve always been a positive person, I try not to spend too much time in Camp #1. Each day I try to think of ways to keep everyone else out of it, too. One aspect I wrestle with is the fact that, no matter how hard I try, I just can’t help everyone — nor does everyone recognize their need for help.

In effect, what I’m doing is providing patient safety insurance. Which takes me to today’s point.

We buy car insurance so we’re covered if something happens to our car. We buy homeowners insurance to take care of us if our homes burn down, or get damaged in some, insured way. Same with every other kind of insurance. We’re guessing that eventually something terrible will happen to ourselves or our belongings, and if it does, we want someone else to have to pay for it — so we fork over big bucks for that guarantee.

So it occurs to me — what if insurance companies sold medical error insurance? Policy owners would know that if a misdiagnosis or medical error happened, all the expenses would be covered. In my case, the $7,000 out of my pocket for the fact that nothing was really wrong with me, would have been paid for.

After all — the insurance companies are the only ones who profit in our current, horribly dysfunctional system, right? They are the only ones that come out on the positive end. So maybe through sales of medical error insurance they could affect positive outcomes for patients and doctors, too?

And here’s an even better idea…. medical error insurance would be sold as an INVESTMENT — and then — only to medical professionals!! That means — the way those medical professionals would make money would be if they didn’t have to pay OUT for errors that were made!! Think of it — the investing doctors would make money because they didn’t make mistakes!! What an incentive!

I think I’m on to something here. Have to think it through some more — because the idea, in its infancy, is both sick and profitable. Which, of course, is exactly what we’ve already got.

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*Patient Advocacy Consultant — for lack of a better term to describe what I do — anyone have a better idea?

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Oh Say can you C? Compliance, Colonoscopy and more

Yes — today’s post is C-based! …. bear with me…. it will make sense in a moment! And we’ll discuss them — Chronologically!

Thursday, I posted a comment to a blog called AlignMap that is aimed at medical professionals (OK – so I eavesdropped) and showcases patient Compliance – issues that surround patients following a doctor’s instructions. Issues such as: Do they or don’t they? Will they or won’t they? Can we expect them to? And what if they don’t? etc etc. The website and blog belong to Dr. Allan Showalter, a psychiatrist in clinical practice who has followed and written on the topic for years. The blog I responded to regards a question about whether doctors should Coach elderly persons to comply. Here’s the post and comment.

Dr. Showalter later sent me an email thanking me for a thoughtful comment (as if most of the ones he receives aren’t thoughtful I guess?) and we exchanged a few emails. Among them, I replied that I was having my own Challenges with compliance that day because I was in the process of drinking down that gallon of gawd-awful nulitely stuff one must drink the day before a Colonoscopy. Dr. Showalter then linked me to another post of his regarding a new approach to colonoscopies, where one swallows a Camera in the form of a pill. Gives new meaning to a Kodak moment, doesn’t it?

Compliance is an important topic. I’ve addressed it previously through two of my Every Patient’s Advocate columns… and I will blog about it another day. But today I want to tell you more about the colonoscopy.

It was an awful experience. Anyone who has had one will politely tell you that the preparation the day before is the worst part, but in my experience, that was not true. Granted — I had both a colonoscopy AND endoscopy (upper — esophagus, stomach, etc) because I have GERD and have been taking medication for it for about 8 years. However — to me, the prep, as awful as it was, was the easier experience.

Now, I’m not a whiner in general. I’m a tough old broad who has handled everything from two C-sections and hysterectomy, to a Cancer misdiagnosis, to a hiaital hernia — I’m no medical slouch! But if anyone tells you the colonoscopy part is easy — don’t listen to them!! Both the installation of the IV, and the cramps really hurt! And I was sound asleep by the time they did the endo — so that doesn’t even enter into this. The nausea afterwards, and the dizziness, finally gone when I woke up this morning….?

Don’t get me wrong. I’m glad I did it. I’m even more glad I don’t have to do it again for 10 years. They did find one polyp in my stomach and I’ll know in a week or so if it’s anything to be Concerned with. They tell me it’s not unusual for someone with GERD, so no problems are expected.

And I think that’s the point — it was worth the pain and preparation to have the peace of mind that those parts of the aging-me are healthy (or maybe aren’t?) Having answers is so much better than being left with question marks.

But you know me — I’m into managing your expectations. If you are planning to have a colonoscopy, and people give you that half-smile and say “the prep is so much worse than the actual procedure” — tell them I say “bull-pooky!” And then — decide for yourself. The only good part is the peace of mind you’ll have when it’s over.

One side note — the nurse’s name was Soibhan Reilly. Some good luck on the day before St. Patty’s!

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