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They called me crazy!

June 19th, 2013 33 comments

I recently ran into a doctor, that I knew during my work on MRSA prevention in 2009.  Well, actually I corralled him in a lobby after he did a presentation at a recent conference I attended.  He remembered me, and he didn’t call on me for Q&A, so I decided not to let him get away with that.  I have never been rude to anyone in my work, but I am certainly determined and honest.

His demeanor has changed drastically from when he testified against the bill I wrote in 2009, to prevent MRSA infections in Maine Hospitals.  I don’t know  if he was afraid of me because I am bigger than him, or if he agreed with others who called me crazy 4 years ago, but I sensed his discomfort while talking with me.    Even so, he was incredibly candid.  He actually told me that “they” called me crazy and they thought I would quit and give up on my endeavor for safer healthcare.  He was a more humble and agreeable man than I remember.  I believe that his personal healthcare experiences with his beloved parents  have changed his tune.  It’s amazing how humbling an experience with healthcare harm can change just about anyone’s perspective on the whole issue.

Imagine…calling me crazy.   Perhaps I was a little crazy.  I was crazy with anger and grief, because a downright dangerous healthcare system killed my father. His infection WAS preventable, but his facility failed him.    I believe that my craziness was justifiable.   My craziness  led to passion and an obsession of sorts.  That passion was to make a change in the lax and cavalier system that allowed this to happen to my father, and as I learned later, hundreds of thousands of others.   Passion led me to others, MRSA activists and experts, the internet, other MRSA victims and their families, legislators here in Maine,  media both written and TV, the Consumers Union Safe Patient Project, Maine Quality Counts, Maine Quality Forum, Maine CDC, CDC headquarters, the Federal DHS HAI stakeholder meetings, speaking and presentation opportunities, conferences, blogging….and on and on it goes.   My trip because of my craziness continues to be amazing.  The most amazing part of this work has been the other “crazy” people I have met.  Some of the most amazing patient safety experts and advocates in the world are on my email list.

Call me crazy, but I’m feeling pretty good about what I am doing….and if it helps to eliminate healthcare harm….we can add craziness to the list of necessary ingredients for success.

 

 

 

 

 

 

Sorry, but I am not accepting new doctors at this time

June 1st, 2013 No comments

This past week, I got an email from my independent doctor saying that she is going to close her practice.  Darn.  I have gone to her for about 10 years and I am pretty settled in.  I only had to get on her case a few times and she was pretty responsive to my ideas and complaints.  I wasn’t a whiner, but I never hesitated to pursue an issue with her.    So, after my July annual exam, I will be shopping for a new doctor.  Fortunately, I will be able to take my time, because generally, I am pretty healthy and I don’t deal with ongoing chronic health problems (well, except for excess weight).

Yesterday I was part of a “patient panel” at the Maine Quality Counts educational session for 75 Patient Centered Medical Homes.  Most of them were brand new to the PCMH brand and ideology. The model for PCMHs  includes Patient and Family Advisory councils for each practice.    This was the 3rd time that MQC has asked me to be part of a panel, so I am getting more comfortable with it as I go along.  3 other brilliant and engaged patients/consumers were also on the panel.  Our moderator was Bev Johnson, CEO of the Institute of Patient and Family Centered Care.  My only discomfort with being part of this panel was that I didn’t feel that I was prepared very well and didn’t really know what was expected of me.  The four of us met with Bev before the panel discussion, and she didn’t tell us what to do.  She gave us a simple format and the rest was up to us.  OK…I can handle that.  Bev is all about Patient Centeredness, and that must be what it is like to be in a practice or Hospital that embraces that concept.  The voice of the patient is wanted and necessary and the patients are  highly respected and honored.  Bev is such a wonderful, gentle teacher and so highly regarded for her work, and I completely understand why.

So, each of us patients introduced ourselves and told our stories of Patient engagement.  I was stunned by the powerful stories of the others on the panel. Amazing really!  When I finished my story about becoming engaged before my hysterectomy for uterine cancer in 2011, I added a little zest.

I told the audience…almost all of them providers…that I was not part of a PCMH, and in fact my independent doctor was shutting down her practice and I wasn’t a patient of anyone.  I said I lived in Bangor, on Pearl St, and that  I was up for bids!!   It was perhaps the lightest moment of the day….and the entire group cracked up.  BUT, surprisingly 2 Bangor PCMH practices bid on me.   That was so funny…   I told them if I chose one of their practices that I would help them with their Patient and Family Advisory council.   The one thing that occurred to me after I got home was that I didn’t make a choice after their bids.  Maybe I should have politely told them  “I’m sorry, but although my doctor is closing her practice, I will not be accepting new doctors at this time”.  Talk about turning the tables!  Patients hear that a lot…”Dr X is not accepting patients at this time”.  I spent 10 years in my previous practice under the care of a very young PA waiting to become a patient of the practice’s doctor.  When that PA told me she was leaving and I would get yet another very young, inexperienced PA, I asked again about becoming a patient of the doctor who co-ran the practice with her husband.  Again, I was told…”she isn’t taking any new patients”.  My arguments about being a patient there for 10 years didn’t pan out, so I found the newer doc….who is now shutting down her practice.

All joking aside, when patients lose their regular doctor for any reason, it is a big deal.  The established relationships, trust and the comfort that comes with a long time provider is gone, and we, the patients, are burdened with the chore of finding someone new.  There is nothing like the trust we put in our regular doctors….just think about it.   We engage with them on our  journey of staying well or attaining wellness. That patient/provider partnership is the key to success.  So, finding a new doc to fill an old doc’s shoes is a daunting proposition.  I will find one, but I will take my time and do some asking around and quality and review checking online.

In the meantime, I will keep those two practices in mind, because they were brave enough and interested enough to actually  bid on ME!!