Tuesday, February 26, 2013

Rabble rousers say, "We are the expert system navigators"

Teresa Pasquini (above, left) is a self-styled rabble rouser, "the queen of the letter writers," who used to spend hours trying to get her local hospital to do a better job caring for patients.  Who better then for CEO Anna Roth (above, right) to recruit as one of the first Family Member Partners for the Contra Costa County Regional Medical Center & Health Centers.

Patient-family advisory councils have been described as "the next blockbuster drug," the single most important advance in the delivery of medical care that is likely to show up in hospitals.  I had the pleasure today as Teresa and Anna participated in a webinar offered by the National Association of Public Hospitals on the topic of patient an family engagement.  Appropriately, most of the time in the webinar was taken by Teresa describing her motivation and involvement in the PFE process.  Her first statement got my attention, and the rest of her talk kept it.  Here are some excerpts:

I need to start my comments by sharing what drives my passion and commitment to this work.  I am the proud mom of a 30-year-old son with schizoaffective disorder who has spent the majority of the past 14 years in psychiatric facilities behind locked doors.

Doors, hope and harm have been a running theme in our life since our son was diagnosed.

My son has been hospitalized over 30 times in several locked facilities.  The past 14 years have been a blur of suicide attempts, over 40 involuntary holds, revolving hospitalizations, and a permanent conservatorship.  With a diagnosis at age 16, we began to navigate a maze of services in one of the most integrated health care systems.  It was a nightmare.

I was an angry mom when I was invited to my first Lean event at CCRMC.

Prior to this event, there was concern about me whispered around the tables and behind closed doors.  Cautious warnings were shared about my outspoken, even radical, direct action approach.  Fortunately, the Administration of CCRMC took a risk and opened their doors and minds and even encouraged me to push them forward.  The first event was the beginning of a special human connection that ignited our shared vision of hope.

Our partnership started off without clear direction.  There were underlying control issues.  We moved cautiously building trust and respect.  By staying at the table we began to overcome our fears and find our way to the "field beyond right and wrong."

We were teaching and learning together and laying down the tools that had been failing.  We were challenging the system and embracing the tension that comes from change.  And there was tension.

The tension was often whispered offline or subtly felt in meetings.  The staff was not trained to be open with "outsiders" in the room.  The patients and families were not familiar with "medicine speak." But through determination, courage, and leadership, the comfort level increased and transformation began.

Contra Costa County Health Services has shown bold courage by offering our community a trusting, authentic, shared learning experience and partnership that goes beyond the traditional advisory role.  We are not token advisors but rather equal and respected partners.  We have learned to speak the truth, hear the truth, and go and see the truth.  With constancy of purpose and focused direct action, we are co-creating a system where the consumers, families, community organizations, clinicians and staff work in a true partnership.  No politics, no discrimination, no special interest, no egos, just pure ethical health care based on the needs of the patient.  I have seen it happen.  It is possible.

Nothing is scarier that the health system when your child is sick.  Please, don't be afraid of an an angry mom or patient.  Invite family members like mine to tell you our experiences and let us help you create solutions.  Nobody comes to work to harm others.  We are the expert system navigators and we will help you design a better system for all.


rose king said...

This should be inspiring to health administrators across the professions.

Teresa Pasquini, a California Mom said...

It is an honor to be called a "rabble rouser." In my advocacy work, I have struggled with how to achieve the right balance between pushing hard and pushing harder. It can be very difficult to ask the hard questions. I do know that we must speak out loud about harm in order for it to end. That makes many uncomfortable. But we must learn to get comfortable with being uncomfortable if we are going to change the health care system.

Having the support of national leaders to encourage patients and families to ask the hard questions is critical.
It was an honor to join Anna Roth and Paul Levy for the NAPH Webinar to share my family story and a journey of hope. It is the leadership of visionaries like these two that will help us all remember not to ever give up. I am grateful for their support and respect for my story.

Time constraints did not allow me to highlight some of the key lessons that I have learned from the Behavioral Healthcare Partnership with Contra Costa Regional Medical Center. I share those here:
• Debunk the Myth of the Angry Mom. We can get beyond our own pain and see system pain.
• Recognize our expertise even though we may not have letters behind our name. Sometimes the most important letters behind a name are M.O.M.
• We want to be supported not trained.
• Help us focus on the work and remember that we are often juggling self-care and/or care giving.
• We want to learn together and teach together.
• We want to know that we are valued.
• We want to be asked what matters and go deep.
• Keep it real because we know if you are not authentic.
• Assume good intentions from both staff and patients and families.
• Avoid blame and shame.
• Get comfortable with being uncomfortable.
• If you make a mistake-apologize and move on.
• Giving up is NOT an option.
• Share your passion for this work.
• Spread the joy.

Anonymous said...

So many of us wanting to be heard!! Thanks for this blog and thank to those who do listen...and to those who still not have heard us please hear our stories we can make a difference and want to!!