McCleary MRSA Prevention

I was seen a month or so ago for floaters and flashers in my left eye, in  Bangor, Maine.    I walked out of EMMC ER without being seen,  because of a very poor  and unprofessional reception, watching a suffering young woman being ignored, and a very long wait time.  I went across town to St Joes.  I was nicely welcomed, quickly and efficiently triaged, waited an hour in an exam room, and was seen by a competent and nice nurse practitioner for about 5 minutes, maybe less.  I had no medicines, no sterile instruments, no diagnostics, no treatments,   and nothing extra.  I walked out with instructions and an appointment with an ophthalmologist the next day.  I had a good experience of care.

Grand total   $1313.85.  HOLY CRAP!

I looked up St Joe’s list of usual ER charges online.  My charges, on my itemized bill were way out of whack.  So, even though my copay will not change ($125), I called St Joe’s billing inquiry line.  The lady was very nice until I asked to participate in the weekly inquiry meeting where they will discuss my bill.  I want to know what they have to say about my bill and be part of the discussion.   It was obvious that this was really really weird for them to deal with someone who actually wants transparency and details about how they came to this wild price for my visit.  She finally relented and said she would tell the supervisor who participates in their billing inquiry meetings that I want to be there.

I asked the billing lady if she has ever heard of the concept of “nothing about me without me”.  I know that this generally pertains to collaboration and communications about our actual care and plans for it, but why not billing and costs.

After reading Rosmary Gibson’s new book. Medicare Meltdown, I fully realize how important it is for healthcare consumers to fully engage in all aspects of quality and cost in healthcare.  We need to protect our ability to access and afford healthcare, because Hospitals, providers, medical device and pharmaceutical companies, for profit companies and others are usurping all of the cream..off the top of the fresh milk bucket of healthcare. They do this with predatory pricing and charging of all patients, and getting what they can from all payers, public and private.      If we do not engage, our existing systems will not survive.

$1313.85 for a 5 minute visit is outrageous and unexplainable….and I want to know details about how they came to that astronomical price.  We all need to become inquiring minds when it comes to healthcare costs and quality.

Since April 2012, I have met monthly with other healthcare consumers as part of the Consumer Advisory Council of the Maine Quality Counts organization (MQC CAC).

http://www.mainequalitycounts.org/page/895/who-we-are

In 2009, I was the lone healthcare consumer representative on the Maine Quality Forum Multi Drug Resistant Organism Metrics (MQF MDRO) committee. I was the only uncompensated volunteer. Other members were infection control nurses from Maine Hospitals, an attorney from the Maine Hospital Association, representatives from the Maine Health Data organization and a couple of epidemiologists.   I was there because my father died of hospital acquired MRSA and because of my passion to do stop MRSA infections in Hospitals. My goals were very straight forward and simple.   The committee worked on the legislative rulemaking for our new law to screen all high risk patients in Maine for MRSA.  I had already spent months working with my State representative, other stalwart supporters and MRSA victims to get that law passed.  The monthly  MQF meetings  were brutal.  Without the skilled mediation of our noble physician leader Dr Josh Cutler, the meetings would have been dominated by one physician, who challenged almost everything I said.  In our first meeting, he said the new law was “irrelevant” and that was how we started.    Back then Patients and/or healthcare consumers were rarely represented on healthcare committees and their opinions were generally disregarded.  There was a prevailing attitude that they were doing us a favor.    Suffice to say that healthcare committees were not accustomed to having an educated and  assertive consumer like me in their midst in 2009.  I disrupted their business as usual when I doggedly pursued better outcomes for patients.  MRSA infections certainly should never be accepted as “part of doing Hospital business”.  I remember sitting in those meetings in 2009 and feeling my face grow red and the pressure behind my ears.     I struggled to stay respectful and polite, but I never succumbed to the dominating and paternalistic behavior I was confronted with.   When I left those meetings, I was exhausted and so frustrated.  We never came to consensus.  When we “finished” our work in that  MQF committee, it was far from finished. We had not completed the work of MRSA prevention in Maine  Hospitals, and it still has not been completed.  Because the MDRO metrics  committee was shut down, my consumer “position” was eliminated and I was effectively and efficiently removed from the work.  I have repeatedly expressed an interest (to the powers that be and through the State and  Federal CDC ) in participating in the work on Hospital Acquired Infections in Maine with the Maine Infection Prevention Collaborative, but those requests have not been answered. I often wonder if there is a powerful patient’s voice in those meetings anymore. I also wonder if we have really moved beyond the perception that healthcare consumers are token representatives in healthcare committees.

When I was invited to be part of the MQC CAC my skepticism was well founded…..BUT,  these meetings are a complete turn around from the Maine Quality Forum MDRO metrics committee meetings.   I sit with other Mainers every month who are all working toward the same goals, but from many different organizational perspectives. We are all seeking safer, better, integrated and accessible  healthcare for all Mainers.  Staff of the MQC organization facilitate every meeting, and they do it with great skill, discipline and organization.   Each of the consumers on this council  was recommended by a consumer organization. I was recommended by the Maine People’s Alliance.  Others represent the  Area Agencies on Aging, the AARP, National Alliance of Mental Illness, Univeristy of Maine, NAACP, Deaf Community, The Homeless,  etc.  Each of us have already accomplished great things in our chosen advocacy work and together we are unstoppable.  Our group is making huge accomplishments for Maine patients, and we are giving them a voice!  We are all respectful equals and there are no tokens in this group.    Together we are strong, proactive and progressive.    The combined experiences and accomplishments of the healthcare consumers in our group are unmatchable.  Some of us have begun to share our work and our accomplishments from outside of the MQC circle, with each other inside the MQC circle.   How can it be that I have become part of this wonderful group of generous and brilliant Maine healthcare consumers?  Most  Maine patients will likely never know who we are, but there is no doubt in my mind that they will all benefit from our work.

It is different for me now.  My earlier days of advocacy and activism were more contentious, a struggle and very challenging.  I left meetings exhausted, angry and frustrated.  Now I leave  meetings exhilarated and inspired.   I contribute and share much of what I have learned during my 4 years of activism and advocacy to this group, and so do the others.  This group is a gift and a miracle in my work and my life.

The following press release was issued from Kathleen Sebelius, Secretary of DHHS,  today.  I wrote to Secretary Sebelius about 6 weeks ago to tell her about my father and his nightmare with MRSA.  I took great care to include truthful and painful detail .She addressed my letter to her in this press release today.  In this release, the Woman from Maine is me and the 83 year old man who died in January from Hospital Acquired MRSA was my Dad.  Secretary Sebelius is listening.  Anyone who has a similar horrible medical experience in their lives needs to let Secretary Sebelius know.  She does read these stories from everyday citizens and responds to them. The part about my father is in the last third of this press release.

http://www.hhs.gov/news/press/2009pres/09/20090910c.html