Mother, Advocate, Partner
When invited by Anna Roth, CEO of Contra Costa Regional Medical Center to participate in a Lessons Learned reflective writing activity with a group of local, national and international leaders of healthcare improvement I hesitated. How could my experience with the healthcare system compare to the important work of these great leaders? I had earned a BA in Liberal Studies back in 1977, but I never really used my education in a formal capacity. I had no letters like RN, MA, MD, or PHD behind my name. I was just a mom. But, I forced myself to reject the feelings of insecurity caused by my inexperience, lack of higher education, and professional degrees. I remembered that I was in fact an expert on navigating the chaos of the mental health system and my life experience earned me a PHD in system survival. That lived experience brought me to a Kaizen Event at Contra Costa Regional Medical Center in July of 2009. Before I share my life changing experiences at CCRMC, I need to go back to the beginning of this story.
I became a mom on August 22, 1982. I had a beautiful boy with ten fingers, ten toes, and all of the indications of a healthy baby. My son had 15 visitors on his first day of life. Grandma and Grandpa, Nonie and Papa, Aunts, Uncles, Cousins, and good friends welcomed his birth. A family joined together by the hopes and dreams of new life. It was my first time in the hospital as an adult. The care I received was amazing. The labor and delivery nurses were unbelievable. My husband brought them flowers as a token of gratitude for the care of his wife and newborn. I received a diamond pendant from my husband that I wear to this day commemorating our son’s birth, the day before our 2nd Wedding Anniversary. We were so proud and hopeful for our new family.
After a five month maternity leave, I returned to work briefly, but soon became a stay at home mom. I had secretly always wanted to be a stay at home mom even though this was the new era of the working woman. I had a promising career in business but left it eagerly and I was privileged to stay at home and care for our new son while managing our newly formed construction business.
From the beginning of my pregnancy I received excellent healthcare. Throughout our son’s first couple of year’s life was good. Then little things started happening that now I realize were clearly red flags. A serious speech dysfluency at age 3, too immature to start kindergarten, and failure to read in first grade. All of these warning signs brought special education supports and therapies through 3rd grade. Our request for testing of the school district failed to indicate a severe learning disability which was a relief. Behavior and defiance issues in 5th grade prompted immediate family counseling. Sleep problems began in 6th grade and by 7th grade there were serious emotional issues at play combined with the beginning signs of drug use. We sought immediate help from the pediatrician who had treated our son from birth. We began to navigate a maze of services in one of the most integrated healthcare systems. It was a nightmare. Balancing a business, a marriage, a family, and a serious mental illness was overwhelming at times. The memories are traumatic to recall these many years later.
The reality of our son’s symptoms wreaked havoc on our family which also now included a daughter. I had to take control and become my son’s case manager, a mental health system expert and special education advocate to save his life. I had the resources and ability to do this although not all families are so lucky. Although we were told when our son was diagnosed at 16 with Bipolar Disorder that we would be lucky if he lived past the age of 25, he is still alive today. After multiple involuntary holds, numerous hospitalizations, conservatorships, and several suicide attempts, my son’s mental illness and the mental health system have changed who I am and taught me that I needed support and partnerships to survive.
I joined the National Alliance on Mental Illness, NAMI, a non profit advocacy and education organization of family members of seriously mentally ill consumers. For a couple of years I went to monthly meetings and shared my grief with other families experiencing the same nightmare. We were on the same team that nobody wanted to be picked for and we helped each other and our children survive.
I remember one point in time when I was taken to my knees in pain. It was following one of numerous hospitalizations where I was ignored, my son was ignored and I felt defeated and broken. I knew that I could not control the current system and all of its injustice, but I realized that I could control how I spoke out and fought against the ignorance and discrimination toward families who have loved ones with serious mental illness. I had a Scarlet O’Hara moment from one of my favorite movies, Gone with the Wind. Just like Scarlet cursing the ravages of the War and her pledge to save Tara, “As God was my witness…” I was going to change the mental health system.
I applied for a Family Member position on our local Mental Health Commission. I had no clue what I was getting into or that my life would change profoundly as the result of this volunteer position. After a couple of meetings, I recognized that there was very little public recognition of the harm being perpetuated on families and their loved ones in a very broken system of care. There was mostly talk of the “positive” things being done. I began speaking of the negative things that my family had experienced by the mental health system. The negative versus positive dynamic created a tension that challenged my advocacy work early on as a Commissioner. In order to encourage the benefit of direct action, I wrote an open letter to the Commission in 2008 on the differences of positive and negative tension. That letter read in part as follows:
…As a mother who has also fought to save my son's life in the mental illness war, I do know the heartache and grief of which our Chairwoman speaks. We have shared our pain and struggles. We share a desire to serve our community and improve the lives of those who suffer, as our son's have suffered. We share a desire to "...influence the system toward positive change even in this tough economic situation."
As human beings, we often share substance, but not always style. It is that distinction that creates the beauty of a group who comes together to solve such an enormous task. It is that distinction that creates the challenge of a group who comes together to solve such an enormous task.
I recently re-read Martin Luther King Jr’s, famous April 16th, 1963, "Letter from a Birmingham Jail," about the importance of confrontation. It is a brilliant piece. The theme is the difference between positive and negative confrontation and their purpose in solving crisis. The letter discusses King's disappointment in the response from the white moderates to his direct-action program. He stated that the "...white moderate, who is more devoted to order than to justice; who prefers a negative peace, which is the absence of tension, to a positive peace, which is the presence of justice..." King wrote, "Actually, we who engage in nonviolent direct action are not the creators of tension. We merely bring to the surface the hidden tension that is already alive. We bring it out in the open, where it can be seen and dealt with. Like a boil that can never be cured so long as it is covered up but must be opened with all its ugliness to the natural medicines of air and light, injustice must be exposed, with all the tension its exposure creates, to the light of human conscience and the air of national opinion before it can be cured.”
Like King, I am not afraid of tension. My deep moral concerns, for the mentally ill and their families, cause me to challenge the power structure and systems that prevent their rightful justice. I don’t believe that tension prevents people from working together productively. I don’t believe that tension prevents progress and change.
As a Commissioner, I seek hope and change. I believe the tension that may arise, from seeking answers from those in power, and expecting accountability, can be constructive. I can not operate as a rubber stamp for those systems that continue to defend minor improvements, for a few, when so many others suffer deeply. Balancing negative peace and positive peace is the challenge before our commission. These are drastic times. Tough questions must be asked. The people we represent deserve the answers. It is the responsibility of our community service to accept that challenge.
This letter created drama and further division on our Commission. The pull of the status quo was mighty and I was encouraged to be more collaborative and not use my personal story so much. I took that advice to heart and rejected it in part. This was personal. I would not be silenced about the harm caused to my family, but I sought to find a more respectful way to challenge the status quo and consider the bigger picture. That led me to the July 2009 Kaizen event at CCRMC.
In July of 2009, I was one of two family members asked to participate in a one week rapid improvement event for congestive heart failure. The team wanted to explore the risk factors of CHF for behavioral health/psychiatric patients. As a family member and mental health advocate, I was asked to participate. 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 Kaizen was the beginning of a partnership that ignited our shared vision of hope.
We started off strong, excited, with the creation of a mission statement to “transform healthcare to be accessible and welcoming for all” We ventured into discussions that were previously reserved for internal staff meetings. We were now speaking freely of access, safety, errors, and improvement. We were teaching and learning together and laying down the tools that had been failing. We were challenging the status quo 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 “medical speak.” But, through determination, courage, and leadership, the comfort level increased and lessons were learned. The main lesson learned is to respect each others lived experience and assume good intentions. Remove blame and shame and establish a just culture mentality based on equity of ideas balanced with regulatory demands. If there are tensions, embrace them and fight through them in order to find the benefits for the patients, the families, and the staff who serve them both.
With the creation of our mission statement came the realization that a previous hospital policy was considered to be non accessible and non welcoming for approximately 600 psychiatric patients each month. The consumer and family voice was strong and challenged the administration to consider re-opening the door to the Psychiatric Emergency Service that had been closed five years earlier in order to re-direct psychiatric patients through the regular ER. By working as a team of change agents, the Heatlthcare Partnership helped push this idea forward by electing two of its members to attend the weekly Executive Operational team.
One of our community partners and I, representing consumer and family voices, joined the inner circle of the hospital leadership to further the opportunities to unite in innovative, strategic, operational change. The first outcome of this effort was the decision to convene a Value Stream Mapping Event for Behavioral Health. The Executive Team supported and teamed with its community partners to explore this idea through science. This effort resulted in the re opening of the Psychiatric Emergency entrance in May of 2010 for direct access to medical and psychiatric care. This has recently been acknowledged by the Joint Commission as an example of excellent patient care.
Opening doors and opening minds to the possibility of systemic improvement through the use of patient and family member advisors has been a primary aim of the Contra Costa County Healthcare Partnership. Since July of 2009, a small group of patient, family and staff have met weekly to develop a shared vision that would transform the delivery of healthcare in our local public system and beyond. We have learned that it is not possible to transform, improve, or integrate our system if we continue with hospital/clinic centric, hierarcachael or territorial thinking. We discovered that we must look behind the doors of our homes, homeless shelters, hospital floors, clinics, ERs, Board rooms, other health divisions, and the CEO’s office in order to prepare ourselves for the cultural shift. We have been doing that in Contra Costa these past months.
It is my honor to share my story and reflections of my journey. I thought back on our family experience during a recent visit to our son while my husband and I drove a total of 5 hours round trip. Psychiatric patients are not often treated near their community, but in far away placements. When we arrived, our 28 year old son came running with such happiness at the sight of our car and stopped at a high wire fence, waving to us. It reminded me of when he was in kindergarten and he used to run to the school yard fence to greet me. The fence reminded my husband of a prison and it took him a while to get out of the car and head into visit with our son in this locked psychiatric facility. My husband still struggles with his inability to rescue his son from his symptoms and the system. They have stolen his son’s freedom, dignity, and often the will to live. How do we hold on to hope when our son continues to suffer by a broken, fragmented, under funded mental health system? I choose to seek partnerships with other change agents who believe that all deserve the right care at the right time. Contra Costa Regional Medical Center and Clinics have offered our patients and families a trusting, authentic, shared learning experience and partnership.
I have exposed my life and story, to the community, in order to help make positive systemic changes. I have interfaced with all layers of the system to teach and learn. I have committed to the Healthcare Partnership with Contra Costa Health Services because of its focus on the whole person and the whole system. I believe in a systemic view when considering transformation. We must unify and empower all who intersect in the care of our most vulnerable patients.
My family has had the misfortune of being exposed to every level of care provided on the continuum of mental health services. I have been to the dark corners of the system. Some were in my own home. Some services were private based care, others were public. I have challenged the hierarchical cultures of both systems, not to be rude or disrespectful, or radical, but to shine a light. I have seen too much and know too much to ignore the realities that cause consumers and families to destruct and die. As JFK said, “We are not here to curse the darkness, but to light a candle that can guide us through that darkness to a safe and sane future. For the world is changing. The old era is ending. The old ways will not do.”
We need to speak the truth, hear the truth and go and see the truth. Constancy of purpose and focused direct action will create a system where the consumers, the families and the providers work in a true partnership. No politics, no discrimination, no special interests, no egos, just pure ethical healthcare based on the needs of the patient. I have seen it happen. It is possible.