McCleary MRSA Prevention

On December 23, just 4 days ago, I had Robotic surgery to remove my Uterus, Fallopian tubes, Ovaries and lymph nodes because of endometrial cancer.  After surgery, I got encouraging news that  most likely I will not need further treatment for cancer. I will get further information on this at my recheck appointment on January 11.  I am forever grateful to my surgeon, and my entire Maine Medical Center healthcare team for exemplary care and a good healthcare outcome.  My great outcome didn’t come  by accident.  It was becasue of  my Healthcare Team’s  attention to detail and careful, safe care.

Just a few weeks before my surgery I sent the following Holiday greeting to my Healthcare team, through an assistant Chief Medical Officer at Maine Medical Center.  My hope was that this letter would be widely distributed. With a few changes, this letter could have come from any empowered patient.  Empowerment is essential in patient safety, but it does not remove the fears that all patients face.  Being frightned is human nature and is experienced by everyone when facing surgery or other medical endeavors.  My intention in writing this letter was not just to get “special treatment” for myself.  I expect special treatment for every patient.  I also wanted to point out the vulnerability that all patients experience and how we put our complete trust in our Healthcare team. 

This letter was distributed and widely read at MMC.  I had visits from nursing and department leadership and staff members and they thanked me for this letter and asked for me to come back to address some of their groups.   Iwill do this gladly and proudly.  I am forever grateful for the safe and excellent care that I recieved at MMC. I believe this was accomplished by hard work, experience,  dedication and partnership with me throughout my healthcare experience.   

Here is my Holday Greeting to my Healthcare team……

 

Happy Holidays to my Hospital Healthcare Team                             December 23, 2011

 

I haven’t met any of you except my GYN/oncologist before I came here today to have surgery, and yet, I trust you, as my healthcare team, with my life.  I am one of you and I am one of “them”.  Today I am a patient (them), but I worked at MMC in 1970 for a few months as a freshly minted RN.  Your ER and your Hospital have grown so much that they are no longer recognizable to me.

 

Today my dedicated husband Mike is with me and will stay by my side and be my advocate.  I am his wife, and I am also a mother, grandmother, daughter, sister, aunt, niece, cousin and friend to many.  Before becoming a trusting but vulnerable patient today, I have been the “strong” one for my family, friends and many thousands of patients during my 41 years as an RN. 

 

Your work is more important to me than you know.  I have had a tragic personal experience with Hospital care. In 2009, my own father died of Hospital Acquired MRSA Pneumonia that he contracted in a small Maine Hospital.  It was an earth shattering experience for me and my family.  So, since then, it has become my quest to make healthcare safer for everyone by working as a patient safety activist.  My work has taken me to the State and Federal DHHS, and the Federal CDC. I affiliate with the Consumers Union Safe Patient Project.  I volunteer my time to make healthcare, and particularly Hospital care, safer for everybody.

 

The work that you do is challenging even on your best days. I know that it seems downright chaotic and impossible some days.   Keeping me safe isn’t easy; it will take a lot of work, skill, coordination, collaboration, communication and care.  Care is the key word.  In current political discussions on Healthcare…the true meaning of care seems to get lost.

 

So, here I am, meeting you all, for the first time today.  This visit wasn’t an option.   I came to MMC to get rid of cancer. Admittedly, I am frightened.  Certainly in that respect, I am exactly like all of your patients.  I chose your hospital and doctors after a great deal of research and comparison to others.  I trust you to keep me safe.  I need your expert care. So, please………  Take the important “time out” before surgery and complete that check list. Give me the appropriate pre op antibiotic and give it at the right time. Keep me warm and clip, don’t shave my hair.  Tell me your name and I will tell you mine, on every contact.  Do it even if I scowl after a half dozen times.  Be patient with my questions, because I don’t know the answers if I ask. Listen to my concerns and my husband’s.  Remember that although he is not medically trained, after 40 years of marriage, he knows me a whole lot better than any of you do. Once I am in my room, please don’t ask him, my lifeline, to leave my side.   He will take a load off your nursing staff and help keep me safe.    Wash your hands every single time you touch me, my stuff or my immediate environment.  Please, help to keep me and my room clean thereby protecting me from infection.  Pain Control is very important to me. Use the 5 Rights for every medicine you give me. Remove my urinary catheter as soon as possible. Involve me in all discussions about my healthcare plan and even if something has gone wrong.  Secrecy erodes trust.  This is a short list of steps that can keep me safe and sustain my trust. .   Push me hard to walk, cough, deep breath, and take fluids. I plan to cooperate with this plan, but I may whine a little.   I want to be out of here as soon as possible, hopefully in just one day.   It’s not that I don’t appreciate the hospitality and your tremendous efforts, it’s because I know it is the best thing for me and my health.

 

I am giving you my trust, gratitude and sincere admiration for the incredible work that you all do.

 

In return, you are giving me the best possible Christmas gift today.  You are giving me the safe, clean and expert healthcare that I need, so I can get back to my family for Christmas and begin my recovery from cancer and surgery.  I plan to be the “strong” one again in no time.

Thank you and Happy Holidays to all of you and your wonderful families. 

Sincerely, Your Patient, Kathy Day RN, Patient Safety activist and advocate

Kathy Uncategorized Cancer, Cancer surgery, handwashing, Healthcare team, Maine Medical center, patient empowerment, patient fears, PATIENT SAFETY., safe hospital care

  December 1, 2011

 

Not anymore.   I have worked very hard to be patient and positive cancer patient over the past month.  That is exactly how long I have had to wait to be seen by my carefully selected Gynecologist/oncologist.  I was given a diagnosis of Grade 1 endometrial cancer on October 19, 2011, by my local gynecologist.   I was seen 2 days prior to that for some intermittent scant bleeding since the first of the year. The bleeding didn’t really bother me except that I knew it was abnormal for it to continue like that and for so long.   I am post menopausal.  Robotic radical hysterectomy and lymphadenectomy was recommended for this cancer.  There is no gynecology/oncologist in my community.

 

When my personal gynecologist gave me my diagnosis, I asked how urgent this was.  She advised that I have the surgery within a couple of months. I made phone calls, talked with medical/nursing/surgical and patient safety experts, sought out infection rates for the hospitals I considered, and did a ton of online research.  I took 9 days to make my decision.  It took 4 days for my local doctor’s office to get my appointment for the consult, and on November 1, I was given an appointment for November 30.  On November 2, I called the new doctor’s office and asked why there was such a long wait.  They assured me it was not unusual and that was the soonest possible appointment.  I called a second time a little later in the month to see if they could put me on a cancellation list to get in sooner.  That did not happen.  At that time, an office manager told me that surgery was usually scheduled within 2 weeks of an appointment . I was also told this when I was doing my healthcare “shopping”.  She also told me that one of the office nurses would be in touch with me within a week or so.  That call didn’t come, so I called the doctor’s office again on Nov 29^th, the day before my appointment, and the office nurse (patient navigator nurse…like I am a ship lost at sea) finally called me at around 3pm that day…less than one full day before my appointment.)  This was about the 3^rd time I was told by personnel from that office that surgery is usually scheduled about 2 weeks out from the consult appointment. Usually is the key word here.   And, this was my first opportunity to talk to my new provider’s office about my cancer and my concerns.  I did feel lost at sea for the whole month of November.  Perhaps contact from the doctor’s nurse would have been a comforting and considerate gesture about a week or two into my wait for my appointment.  I don’t think that I am the only cancer patient that ever suffered a great deal of anxiety of my new cancer diagnosis and the need for major surgery. Patient centered care should be all about the patient, and allaying their anxieties.

 

I was hanging on, being patient and thinking that a surgical date two weeks after my appointment wouldn’t  be too bad.   But, I was still very anxious and stressed over that wait, and at one point, I had even asked my local doctor’s office to call on my behalf to see if I could get in for an appointment sooner….no luck on that either. She refused to make that call because she “has no control over the other office’s practices”.  ‘Thanks a heap’ I thought.    

 

It has been 6 weeks since my diagnosis and today I was given a date for surgery by my carefully chosen specialist…January 6, 2011……….another 5 weeks and one day from today.  My wait for surgery has essentially doubled.  This is absolutely outrageous and I am livid!   I am definitely questioning my choice of practices.  If I had chosen the practice I was considering in Boston, my surgery would be completed by now, and I would be recovering.  I hate making mistakes….and I hate waiting with around with cancer inside me even more.   Both of my doctors have assured me that the cancer I have is the “best” cancer I could get.  Why is that so hard to swallow?  Because NO CANCER IS A BEST CANCER!!  WHEN A PATIENT RECEIVES THE DIAGNOSIS OF CANCER OF ANYTHING, THEIR  FIRST AND BIGGEST PRIORITY IS TO GET RID OF IT AS SOON AS POSSIBLE!

 

When I was carefully shopping for my new doctor, their patient representatives (people who answer the phone) said they generally schedule surgery within 2 weeks of a consult. I was told the same thing during several subsequent telephone conversations with that office.   I was mislead and misinformed .  I planned my life around that information and fully expected to have my surgery completed in advance of the upcoming holidays and to be recovering over the holiday. What a great Christmas present that would be…to have my surgery over with, my cancer removed and my recovery progressing.   Apparently, the office staff was unaware of the following reasons that could delay a surgical date.

 

1. It is the Holidays and the doctors have families and will be taking time off. (I fully expected to NOT interrupt anyone else’s Holiday because I thought my surgery would be well over with and I would be spending my own holiday recovering.)  When I was told this, it was the only time I was snarky and nasty to the doctors staff.  I responded with “I am sorry my cancer came at an inconvenient time.”
2. Some other people need to have surgery before the end of the year because if they wait until 2012, they would have to meet another insurance deductible.  (I wonder if those other patients have a new cancer diagnosis, and if so, I certainly would not want to displace them in the doctors schedule, but if not…….this simply is not reason enough to postpone or delay MY surgery and the possible cure of my cancer)
3. The doctors only have certain blocks of time to do these robotic surgeries in the operating room where they practice and scheduling is tight.  (If this is happening, then the Hospital needs more surgical space or more robots and/or they need to get more qualified GYN/oncologists in this practice.)  This should not be my problem.  My cancer is my problem.

 

Wow, these are some pretty crazy reasons to make me…a newly diagnosed cancer patient, wait another full 5 weeks for surgery.  I have always proclaimed, I don’t want special treatment, I just want efficient, safe and timely care. This is an expectation that every patient should have.    This whole experience makes me really sympathetic toward poorly prepared, uninformed, intimidated, frightened and passive patients.  How must they be treated when a big mouth with great health insurance, like me, is facing all of these hurdles.   Every patient needs a course on Patient empowerment.

 

I really liked my new Gyn/oncologist.  She was very patient with my concerns and questions and she spent a great deal of time with me.  I am pretty sure I went over my allotted/scheduled time and into someone else’s time.  My biggest concern is that she did not seem to be aware that MRSA colonization is a real and big threat to pre operative patients and it is important to be screened far enough in advance of surgery to allow for decolonization and a possible change of preop antibiotics.   My request for MRSA screening kind of threw her off, but she was willing to put me in touch with the Hospital epidemiologist.  I am waiting for him to call me.   The other concern was that she told me that my cancer is slow growing and it is not a risk to wait.   I don’t believe she can know that for sure until she has my female organs and lymph nodes in her hands and they are examined under a microscope by her and a pathologist.  She has no way of knowing how deep my cancer has grown  into my endometrium or uterine wall or if other organs or surrounding tissues are affected by it.   I know this because I have researched my diagnosis and my surgery constantly since the day I got my diagnosis.  I know doctor said these things to comfort me and to allay my fears, but I am afraid…and I’m afraid that it didn’t’ do any good. By the way, my tissue sample had not been sent to this practice before my consult, so the new second tissue exam/biopsy had not been completed. She told me that was a problem within her office for not requesting it and she would look into it.

 

My new office is setting up pre operative testing in Bangor so I don’t have to travel to Portland for a pre op visit. So that is nice.  I asked that they send me the surgeon’s consent form so I can preview it before signing on my surgical date (whenever that might be).  Hmmmm, she said, nobody has ever asked for that before, and she would have to check on it.  I told her I would actually like to read it before I am in the pre op area under a great deal of stress or under medication.

 

Just a few more crazy things that have happened recently during my healthcare journey…. I was nearly given the CT scan copy disc of another patient by my local medical center imaging department.  The alertness of the lady in the office saved me from receiving someone else’s CT scan on a disc and saved that other patient from a HIPPA (medical information privacy) violation.  The person I spoke with earlier,to get this disc, did not verify my birth date. This is an example of how important patient identification information validation is. Also, the copy of my medical records from my regular doctor did not have any lab, xray or other diagnostics from 2010 or 2011.  I thought those things might be important so I went back to get them.  My new doctor didn’t ask for my records.  And, (this is actually kind of funny if I wasn’t so angry) Yesterday, after Mike and I were put into a conference room to meet with the doctor ,prior to my exam, there were 3 fire alarms, one after another.  We were forewarned that they were testing the fire alarm system that morning.  During the first alarm we stayed in the room.  During the second and third we had to evacuate.  The doctor had started our consult, but when the second alarm went off, she had gone to answer a phone call.  During the third alarm, we were in the middle of the consult.   This was just too many interruptions during a single consult…..Chaos aplenty….

 

Summary.  I was given a diagnosis of endometrial cancer Oct 19.  I had a few minute conversation with my personal GYN doctor about it on Oct . 20, while I sat in a pool of blood and pus from an abscess I&D (incision and drainage) that I’d just endured. Jeesh, so much of women’s care is still barbaric and messy.   Then I was hung out to dry for a full month…with my questions and concerns. My consult appointment wasn’t until November 30, over a month after the referral was made.    I fully expected to be recovering from my surgery over the Christmas holiday because that is what I was told several times by my new doctor’s office.  Now I am hung out to dry again until January 6.  But, they “ are working on it” to see if they can make it happen earlier.

 

 

 

November 2, 2011

 

I spent a sleepless night, suffering with heartburn and anxiety.  After I pulled myself together in the morning, I started making phone calls.  Passively waiting for a “better  surgical date” for surgery is not an option.  I needed to take action for myself.  I called 2 more Hospitals in Boston to see if they could send me a rescue boat.  One was encouraging and will call on Monday.  I also called my doctors practice administrator.  Her name and number were given to me by the woman who called with my surgical date.  She was very nice, asked a ton of questions and sympathized with my concerns.  She is also looking into getting an earlier date.  Then I called the assistant Chief Medical Officer of Maine Medical Center who is in charge of Patient Safety and HAI prevention, Patient satisfaction and improved quality of care.  I worked with this gentleman and scholar when I was on the Maine Quality Forum committee for MRSA prevention.  He is a serious and compassionate doctor and I was very glad to receive his return phone call.  If anyone can help me, he can.  It is good to know effective and smart healthcare leaders like him.  It’s too bad every patient did not have the same privilege.   My new doctor had already emailed him about my requests for pre operative MRSA screening and possible decolonization and pre op prevention of MRSA.   His call gave me a lot of encouragement.

 

I’m beginning to wonder if I might be the most challenging patient they have had in quite some time.  I hope so, because the things I teach them by being empowered (difficult and demanding may be the words they are using) may have a positive impact on other patients.  My actions might improve my healthcare experience, and it might help others as well.  My ears are burning. That must mean that many people in Southern Maine Healthcare systems are talking about me.

 

I am not a patient patient anymore.  I am a stressed and frustrated patient, but I am also in full battle mode for my best healthcare experience.    I do worry that this wait and the stress will affect my prognosis.

Kathy Uncategorized

 In my fantasy world, once a patient is told they have cancer, things move along very quickly to give them the fastest and best possible treatment necessary to get rid of it. That is how it is in on Lifetime Movies and in novels anyway.  Once the patient has been given the alarming news of their cancer, within a week or so, every local and nationwide expert is at their service and helping them to beat the disease.

 

Four  weeks ago tomorrow (Oct 19, 2011), I got a call from my Gynecologist telling me I have Grade 1 endometrial cancer. I had gone for a check for some abnormal bleeding and a biopsy had been done 2 days prior to this call.  It is a call that nobody wants to get.  I didn’t flip out or faint or anything, but I was quite shocked and frightened by that call.    My personal Gyn’s recommendation was to seek robotic assisted total hysterectomy.  That means that a doctor spends his/her  time at a console with a magnified 3 dimensional image on a screen and he/she is controls the 4 arms of a Da Vinci robot, while it removes my uterus with cervix, my fallopian tubes, ovaries and some surrounding lymp nodes.  I had the presence of mind to ask how urgent it was to get my cancer taken care of.  She said certainly I would not want to wait a full year, but that I probably should get it done within a few months.

 

Her response to my question allowed me a little time to do some online research, consult with my Patient Safety colleagues, and make some phone calls.  My Patient Safety activism has taught me about what and who to seek out and the appropriate questions to ask.  I did my homework and made a determination that a GYN/oncologist in Portland, ME and Maine Medical center would be my choice. It is tough to decide who to trust with your major surgery.   I called my personal GYN’s office again and asked them to make the referral.  Apparently, we patients are not accepted on a self referral.  I know, because I tried.

 

I took  9 days to make my choice. It took 4 more days to get an appointment.  Total so far 13 days.  On November 1, I was given an appointment on November 30.  Tomorrow it is 28 days (4 weeks or 1 month) since I learned of my cancer.  November 30 will be 41days.  Then I don’t know how long after that before my surgery will be scheduled.  That “couple of months” recommendation is frittering away.  I honestly never dreamed I would have to wait for a full month to see an expert GYN/oncologist for cancer surgery.

 

I am a little nervous about this wait.  In fact this wait is agonizing.  I took a day to cool off before I called my carefully chosen Gyn/oncologist’s office to ask about the wait.  I spoke first with the intake people.  I was put through to the office manager, so I still have not spoken to a nurse.  The office manager was calm and kind and assured me that they “triage” all of the patients that are referred to them, and schedule accordingly.  I expressed my concern that my cancer could grow and spread and perhaps that would impact my healthcare outcome.  She then offered for me to be seen 1 week earlier by a different doctor (a male).   I decided to stay with my chosen doctor because she is a woman and because of her experience.   

 

A few concerns have grown since I made my choice.  My doctor is only in her office one day a week.  I’m not sure if that is because she is so busy doing surgery or other OB/GYN/oncology things.   My other worries and concerns would fill a book.  I might write about them at a later date.

 

I have decided to use my time before surgery to do some proactive things.  I have spoken with 2 expert GYN surgical nurses.  My list of questions for both the doctor and the Hospital has grown exponentially.  They are going to hate to see me coming, but I have a right to know these things….so does every other patient.

 

I am also trying to eat better …less sugar and fat.  That is a tough one for me.  I’m also trying to drink more water. 

I continue to study my condition, alternative treatment (there aren’t any), complications etc.

 

I am walking every day. 

 

I am purchasing a few things that the “Hystersisters” online recommend. The Hystersisters is an online forum of women who have had or are facing hysterectomies.   I got one of those picker upper thingys that old people use to pick up things from the floor or reach into a cupboard. Apparently, bending and reaching can be painful after hysterectomy.   I will also get an abdominal binder.  I had no idea those were still in use, but the Hystersisters swear by them.  Apparently these lightweight girdle type garments help to prevent fluid buildup in the belly after surgery.  Also, one of these sisters said that gravity is not your friend if you have a big belly….and I do….and this binder can help prevent discomfort when bending, standing etc.  

 

I am sewing comfy PJs.  Jonnies will just not do for me.  I need better and bigger coverage.

 

Soon I will pack my little dittie bag for the Hospital to include a warm afghan, socks and slippers, a personal photo of my family and dog, my journal, my cell phone and charger, and my Patient Pod, a brand new product that a co activist is promoting and I will use one to help her promote it.

 

So, I don’t really know if this wait will impact my prognosis, my cancer, my treatment or anything else, but since I don’t seem to have a choice and we can’t control everything, I am doing some things in preparation for my surgery, my hospital stay and my recovery.

 

And, I will celebrate Thanksgiving with my family.  That is very important.  Who knows what condition I will be in at Christmas?  That is one more demand I will have…I will not have surgery close to a weekend (sometimes means less staff and longer stays) or late in a day (may mean an extra night in the Hospital or a dirty operating room or instruments) or during a holiday week (less staff, less safety, sometimes longer stays).  So, I have a very huge hope/expectation that I will be the first surgical case on a Monday or Tuesday sometime prior to Christmas week.

 

This is what waiting is doing for me…..although it is agonizing….it allows me time to plan my safest healthcare experience.  I still hate this waiting…………………………..

Kathy Uncategorized

I have learned that although I am a smartie pants patient safety activist, and I know all the correct questions to ask and who to ask, the answers are hard to come by.  The most transparent places I called were Maine Medical Center and Eastern Maine Medical Center.  The hospital I called in Boston had attitude.  I asked their infection control nurse what the infection rate was for robotic assisted hysterectomies, and all hysterectomies and I was told “well, I know they are below the National average”.   Exactly what does that mean?  I have no clue.  She also said that they are not required to report those numbers to the public, but in a year, they would be doing that.  I told her I have cancer now and I need surgery, so that report in a year would do me no good.  Then she went on to tell me she did not have the authority to give me that information.  When Iasked for someone who did have the authority, she said I would have to wait until Tuesday(this was the previous Thursday) and call back, but she was not certain I could get that information.  I did not call back.  I was completely turned off by their lack of transparency.

Both of the Maine Hospitals I called gave me the information they had on infection rates for hysterectomies, and EMMC even had it broken down for robotic assisted hysterectomies.   Both were concerned compassionate and friendly.  It might be because I know both of them from my MRSA work.  Even so, I appreciated their honesty and candor.   The only problem I had was finding out about other complications of their robotic assisted surgery cases.   I think if I had persued it further, I could have found out, but sometimes there is such a thing as TMI….too much information.  TMI can be kind of frightening.

So, although the original plan was to go to Boston and engage the doctor who did the first robotic assisted hysterectomy in New England, I have changed my mind.  That is the perogative of patients/healthcare consumers.  I did my homework.  I also asked my personal local doctor her opinion.  She was  very candid.  Her own husband died of melanoma this past June.  She basically said that given the choice of going to Boston or Portland (she and her husband went to both places), she would choose Portland.  Her comments were that the Boston teaching hospitals are world class but they love having you come there to learn ‘on’ you.   She went on to say that Maine Hosptials have the focus of Patient Safety.   This was reassuring to me.  She is a wise doctor.

So, after all my struggles and conflicts with Maine Hospitals and the Maine Hospital Association over MRSA, I will put my trust in Maine Medical Center and a GYN/oncologist there to take care of me. I am hoping that my activism has made Maine Hospitals safer places.   I have the expectation of a very safe, infection free experience.  I am scared enough about the risks of anesthesia, complications, post op pain,  recovery and beyond…..I really don’t want the added concern of preventable harm.  Eastern Maine Medical Center would have been an option if they had a GYN/oncologist, but they do not.  MMC does and that is where I will go.

I encourage all potential patients to call the hosptials they are considering and ask about their infection and complication rates.  Look the Hospitals and Doctors up on Healthgrades.com, or Why Not the Best. com websites to see their ‘grades’.  Ask around, talk to your doctor.  Ask him or her “if this was you or your mother, with exactly the same risk factors, where would you go for care?”    No question is a stupid question and all the answers (or lack of answers) are important in making your best healthcare choices.

So, my first lesson in my personal Healthcare journey  has been that although one can know the right questions, we can’t expect to get all the answers…and in some cases we can’t expect any answers at all!  But, the answers we do get and the way they are delivered can have a huge impact on your decision.

Kathy Uncategorized Eastern Maine Medical Center, Infection rates, Maine Medical center, Mrsa, PATIENT SAFETY., preventable medical harm, robotic assisted hysterectomy, Women and Brighams

I am a privileged and lucky human being.

 

Eight days ago,  I was diagnosed with Uterine Cancer, stage 1.  Most would not consider getting cancer lucky, but it could be a higher stage, a more aggressive form, and in a worse place like a lung or pancreas.  I own this cancer and if all goes as expected, having a robotic assisted hysterectomy and enduring a brief recovery will be the end of the treatment for it.  Yes, I am lucky.

 

Other ways that I am lucky are that I have a dedicated supportive husband who will stay by me through the entire ordeal, unless I am too bitchy and drive him away.  I will try my best to be nice.  I also have 2 supportive sons, other great family and friends and a warm lovable lap dog who will keep me company (and my lap warm) while I recover.  I have a comfortable home and very good health insurance…..yes, I am lucky.

 

I worked as an RN most of my adult life.  After my father died of Hospital Acquired MRSA pneumonia 2 years ago, I became a volunteer patient safety activist.  I have talked with so many people who have had devastating injuries or who have lost loved ones because of harm caused by Hospital care.  I have also talked with many who have had exemplary, almost miraculous experiences when being cared for in Hospitals.  Obviously,  I am shopping for the exemplary Hospital experience.  Again, I am very lucky to have a bit of time to make choices and keep myself safe!  My surgery is necessary and somewhat urgent, but not an emergency and that is an advantage.

 

How do I manage to get the exemplary experience….how do I get to be one of the lucky ones in this?  Is it luck or planning?  I believe it is planning and empowerment.

 

This is where my Patient Safety colleagues come in.  I have worked with and learned from the most experienced, bright and empowered patient safety activists and advocates in the country.  In the Consumers Union Safe Patient Project, we have doctors, lawyers, nurses, a construction contractor, medical policy analysts, an actress, data analyst, a professional fund raiser, editors, writers, psychologist, an airline attendant and others.  All are either victims, or survivors of victims of medical error or hospital acquired infections. They have all learned from their horrifying healthcare harm experiences, and they share their experiences and knowledge with ALL consumers, each other and ME!   Each and every one of them has taught me important parts of being an empowered and therefore safer patient.  I do not stand alone in this endeavor…I am backed by the most impressive Patient Safety activists in the US!

 

Some of the gems of knowledge I have gathered from my colleagues and used so far are…

1. I have the infection rates for my surgery in 2 of the 3 hospitals I am considering
2. I have read the reviews and “grades” of all the doctors and the Hospitals I have considered
3. I have networked with others who have had this surgery.
4. I have learned everything I can about the surgery, the options, the possible complications, the alternatives (not too many with cancer), the risks, the recovery, and what to expect post operatively ( before even seeing the specialist)
5. I will started my journal, which I will continue while hospitalized
6. I will make an appointment to complete a living will and a durable POA with our attorney
7. I will study my consent form and add or take out the parts I am uncomfortable with
8. I may bring signs or have a tee shirt made identifying myself as a person who demands handwashing  “Wash first or don’t touch me!”
9. I will ask for MRSA and VRE screening pre operatively, and I will use Chlorhexidine antiseptic showers for 3 days pre op.
10. I already know exactly who will perform my surgery (no first timers will practice on my old body)
11. I have my list of questions prepared for the day of my surgical consult.

 

I am still doing my homework and will be able to add to this list soon…

 

 I just came back from the 2012 Consumers Union Safe Pateint project Summit.  I just spent almost 3 days with the most passionate patient safety activists in the country.  I shared my new diagnosis with several of the CU group, not for sympathy, but to gain expert advice and moral support.   During our general meetings/presentations, we discussed at length EXACTLY what I am challenged with now as a healthcare consumer/patient.   The suggestions from these experts have become my bible…for my own safety.  I have worked alongside them for over 2 years, to benefit others and to empower everyone to have an exemplary healthcare experience.   They are candid, experienced and they care. They all give their time, hearts and souls to this work.  These are the people who have given me the best advice any patient could possibly seek for their safest healthcare experience.

 

These are my trusted friends and Patient Safety colleagues….

 

I am truly lucky.

Kathy Uncategorized

In the near future, the Maine Health and Human Services Committee will hear arguments for and against LD 267.  This is my proposal, sponsored by Representative Adam Goode of Bangor and 8 other cosponsors that will improve Patient Safety in Maine Hospitals.

MRSA is deadly.  It is easily spread in hospitals and in the community.  Both of the most common strains of MRSA, Hospital Acquired and Community Acquired are spread in hospitals and other health care facilities.  Both can cause deadly infections in the blood stream, lungs and other body parts and systems.  Health care workers, if not using the appropriate contact precautions, can carry MRSA on their hands and clothing and on medical equipment, from one patient and/or their surroundings, to another patient and/or their surroundings.   It is happening every day in Maine hospitals and without proper screening and precautions, it will continue to happen.

Ideally, every patient should be screened for MRSA on admission or within a couple weeks prior to admission, allowing for decolonization prior to admission and/or invasive procedures.  But, short of testing ALL patients, high risk screening is necessary.  LD 267 lists the most widely accepted list of high risk patient populations.

1. Patients who have been in a nursing home or hospital in the past year.

2. All ICU patients

3. Patients who have been in a prison in the past year.

4. Dialysis Patients

5. Patients getting surgical implants.  ie. knee replacements, hip replacements, cardiac valve replacements

6. Patients with open lesions with redness, swelling, and other signs of infection

7. Patients with known history of MRSA

This list includes not only patients who are at risk for being a carrier or “colonized” with MRSA, but also those who are at risk of becoming infected because of the procedures or departments they are facing when hospitalized and those who may already be infected.

CDC recommends isolation or cohorting patients all known  MRSA colonized or infected patients.  If a patients status is unknown, hospitals are not taking appropriate precautions.  Ignorance is not bliss when it comes to MRSA.  Ignorance is deadly when talking about MRSA.  It is imperative to know a patients MRSA status, in order to protect them (with decolonization) and to protect the patients they are roomed with.

The recent Maine MRSA prevalence study revealed that nursing home patients had an average of 20% prevalence of MRSA colonization.

http://www.mainequalityforum.gov/2011_Final_HAI.pdf

This is alarming.  Much of MRSA is coming from nursing home patients.  We need to screen every single new nursing home patient on admission to their nursing home.  Education needs to expand and be emphasized in long term care facilities.  Our elderly and disabled deserve better than they are getting.

I’ve heard repeatedly that MRSA “isn’t that big a problem” in Maine Hospitals.  “There aren’t that many patients with MRSA”.  That is a perspective.  Considering the thousands of patients going through our larger Maine medical systems every year, the number of MRSA vicitms may seem insignificant to hospital representatives.  But, ONE single MRSA victim is one too many. The Federal Health and Human Services Department and the Federal CDC implore Maine Hospitals to aim for ZERO.  There is no way to do that without using Active Detection and Isolation and without actually counting every single infection in our hospitals.  Then publicly report those cases.  Let the victims, patients and health care consumers decide what is a significant number of infections and what is not.

Please support Maine LD 267 to prevent MRSA.  And also support the right of all patients to have a patient advocate with them 24/7 with few exceptions.

Kathy Uncategorized

Sending warm vibes from Florida….still standing up for Patient Safety.  Nurses, in the right numbers, keep patients safe.  Stand strong.
I am at the Institute of Healthcare Improvement National Forum in Florida. IHI is considered to be very progressive and effective with patient safety measures including Central line and other bundles. It is my understanding that EMMC uses the IHI CLABSI prevention bundle.
 Presenters came from all over the country and world to tell us about their effective approaches to very serious quality issues, medical errors and infections.   Amazing strides have been made in Patient Safety.  Many are touting their own facilities progress,  because so many have them have gone a full year without ONE SINGLE CLABSI!!   Others are reducing their HAI rates with effective and extensive IC programs including MRSA screening and Isolation and other HAI prevention methods.  Early detection Sepsis bundles are being used and are working in hospitals nationwide.  Sepsis is being detected earlier and more lives are being saved because the bundle use starts in the ER with early screening. The “bundle” includes  blood Lactate and Blood cultures…always done together.  They have pins that say “Got Lactate?” and the tubes for those two  blood tests are “bundled” together.  Simple strategies that make the bundle easy to use with consistency.  This is amazing news…encouraging news.  I am thrilled…

These innovative and powerful approaches require a cultural change within facilities.  Safety must become the priority….the number one priority from the Board of Directors, to the CEO, to the CNO, to the COO, to middle management, to the physicians, pharmacists, Quality and IC departments and on down the line……YEP, all the way to the bedside nurse (I think you should be at the HEAD Of the line)   There is no “quality” without “safety”

Every single new, innovative, effective approach for safety and infection prevention  requires hands on, eyes on and ears on the PATIENTS and on the process. Every new bundle requires monitoring and nurses do that.  Safety approaches (bundles and infection prevention measures) require time….mostly direct bedside nursing care time.  Every patient deserves the safest best care every time. 
The chaos and fire snuffing caused by insufficient staffing is not acceptable…it never has been and never will be. 
Stand strong for your patients. Keep them safe.  And when you get past this grueling negotiation process and time allows,  promote and get yourselves onto patient safety committees to further your agenda for Patient Safety.
I wore my heart shaped MSNA pin stating that “Patients are my Special Interest” and I got tons of comments on it…people wanting to know where I got it.  You can all be sure I told them…in detail…where I got it and about your fight for Safer Patient Care.
My body is in FL but my heart is with the MSNA nurses…….

Kathy Uncategorized

The study results released today by the Office of the Inspector General of the DHHS about Medicare patients is very disturbing.  ONE IN SEVEN medicare hospital inpatients suffered harm because of medical error/or infection.  This is huge. It is unacceptable and it is a big secret from most unsuspecting patients being admitted to the hospital.  Although half of our States have mandated reporting for medical error, not even all of those accurately report medical errors/hospital acquired infections.

How do we change this?  First of all we make them report it.  Mandatory public reporting of medical error and hospital acquired infections is a must.  Without transparency and accountability, there will be no change.   Mistakes and deadly infections will continue to be swept under that dirty rug and paltry investments in prevention will continue.  Second, we support improved staffing at our local facilities.  Safe staffing equals safer patients.  Third, we pressure our legislators to support any and all Safe Patient legislation, including prevention legislation,reporting legislation, patients rights legislation and informed consent legislation.

At the  recent Consumers Union Safe Project summit,  ad campaigns to educate people who are entering the hospital were discussed.  Having blind trust in our hospitals and doctors and other caregivers is a very naive way to conduct one’s self when hospitalized.  Educate yourself about your condition and help others who cannot do that for themselves. Ask if the surgery/treatment/medications are necessary and if there are alternatives.  Get second opinions.  Check out your Doctor’s history and experience.  Ask for your hospitals record on medical error and infections.  Finally take a patient advocate with you.  If you will be impaired physically and/or mentally because of your surgery or medical condition, ask a trusted loved one or friend to be your advocate. Don’t sign your consent for treatment or surgical procedure until you are perfectly clear on all the risks, including infections. Carry a journal for yourself or your advocate to use to document who visited you in the hospital and for what reason, list your medications, etc.  And make sure all of your caregivers, and visitors are washing their hands before touching you.

Don’t count on your hospital to do it all for you….as much as you would like that.  Take a stand for yourself or your loved one. Be prepared and educated.  You will be safer because of it.

http://oig.hhs.gov/oei/reports/oei-06-09-00090.pdf

Kathy Uncategorized consumers union safe patient project, DHHS study, handwashing, hospital acquired infections, medical error, Medicare study medical error, Patient advocate, PATIENT SAFETY., public reporting, safe patients, safe staffing

Last week, I attended my first CU Safe Patient Project Summit.  Besides the incredible CU staff, about 30 grassroots activists and patient advocates from all over the US attended.  There were the “old timers” and some new faces too.  In that group is the most incredible pool of experiences and knowledge I have ever known.  Our knowledge and wisdom is not really anything we have sought out. This is not a club that people clamor to be part of.  Each of us has had a tragedy in our lives, a loss, a horror that hurts every time we talk about it.  Either we have lost a loved one or some have suffered themselves because of medical error or hospital acquired infection.  Amongst us are mothers, fathers, sisters, brothers, daughters and sons,  of people who have died or become severely disabled because of  a failure in our healthcare system.  We have a beautiful member who is still suffering and who will this month, have her first day in 4 years without a hole in her gut from flesh eating infection contracted in a hospital.  We have another who was rendered blind during surgery.  These are unspeakable tragedies, and yet we all share this common thread.  We talk to each other about our pain and loss, we cry, and then we haul out the BIG GUNS.

Each of us have done incredible things in our own states and communities to make a difference for others.  None of us want these horrible things to happen to anyone else in our families or our communities.  So, we have taken it upon ourselves to stop the horror.  We have taken on our State hospital and medical associations, our hospitals, our legislators, and others in power to change the broken system that has killed or maimed us or our loves ones.  We don’t know the word “failure”.  It is not an option because it means more will suffer. The healthcare system has already failed, so it’s nothing we will accept.

These meetings are heartbreaking, enlightening, validating. stimulating, educational, and most of all necessary.  We compare notes, share successes, and strategize for future work.  We compile our work and our personal “best practices” and take them home to help us succeed in our next steps toward healthcare safety improvements.

CU gets it.  They know exactly what they are doing by bringing us all together.  Our work, as individuals and as a union will get noticed.  We, with the help of CU, are moving or busting up the big  boulders in our way. We are a movement that will not be ignored or stopped.

Thank you CU for drawing me into this movement.

Kathy Uncategorized

This is the Bangor Daily news story about a very brave and determined woman.  She felt that a grave injustice was done to her when she sought care at EMMC in 2007.  She had abdominal cramping and was 16 weeks pregnant.  Her hometown hospital has no OB/GYN service or doctor.  So she travelled the 70 miles to EMMC for care.  They examined her, determined that her baby was dead and sent her home.  Please read the three stories that the BDN wrote regarding this womans case. 

It is my opinion that this brave woman may have made a statement to Maine and US hospitals that even if they have a policy that protects THEM if they discharge a miscarrying woman, it isn’t the right thing to do.  I believe she may have set a precident with her determination to reveal the injustice done to her.

http://www.bangordailynews.com/story/bdn/Jury-deliberates-Morin-miscarriage-case,156701

http://www.bangordailynews.com/story/Statewide/Woman-ends-testimony-in-stillborn-fetus-case-in-Bangor-court,156563

http://new.bangordailynews.com/2010/10/19/news/bangor/woman-sues-emmc-over-stillbirth-at-home/

Kathy Uncategorized bangor daily news, court case, EMMC, hospital policy on miscarriage, Woman miscarries