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The Beryl Institute invites members to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, contact michelle.garrison@theberylinstitute.org.

 

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Where’s My Casserole?

Posted By Glenn Kopelson, Monday, April 2, 2018
Updated: Monday, April 2, 2018

Did you know that 18%1 of the population has a mental health condition?  Did you also know that 11%2 of the population has heart disease? There is less heart disease in the United States than people with mental health disorders. With mental health issues more  prevalent than heart disease, why are mental health patients and families stigmatized?

Recently, the stigma associated with a mental health disorder affected me in a very profound way. I’m familiar with mental health issues because my family has a history of depression and anxiety, but in 2016 my 14 year old daughter had a suicide attempt and we were exposed to the stigma in a way which was new to us. Our journey started with my wife and I rushing my daughter to the emergency department where she had another three visits over the course of four months and was also admitted to the psych ward each of those times. After her time in the hospital, she spent the next several months attending a daily intensive outpatient program for adolescents. Next she spent one month living in a residential treatment facility. She spent the next six months at home enrolling in online schooling. With many doctors visits for medication management and one-on-one therapy in addition to group Dialectical Behavioral Therapy, she was able to integrate back into High School this year. I’m happy to say that she is doing much better as her suicidal ideations have diminished thanks to all the care we received over the past year. It’s been a long road to recovery and it would have been easier had stigma not been a part of her journey.

Unfortunately mental health disorders are viewed as embarrassing. It’s embarrassing for the patient, but also for the family because the subject is viewed as taboo by friends and family. This isn’t the case with other illnesses. Why is having heart disease less embarrassing than suffering from depression? Why is taking Lipitor more acceptable than taking Prozac? My family was faced with an ambush of gossip and innuendo. Your friends and family think, “they must be bad parents because they didn’t know what was going on with their daughter.” Moreover, what do I tell people at work? They surely won’t understand that I need time off to care for my daughter  I can’t say anything at work because then it will go through the rumor mill and I don’t want to deal with all of that office craziness. Sure we received support from some of our friends, but for the most part, people were scared to talk to us because this was a mental health issue. 

In addition to the stigma that my wife and I experienced, my daughter went through her own pain with shame caused by her friends.  She was now labeled the crazy girl who was admitted to the psych ward. Teenagers perceive the psych ward as a place where crazy people are in straight jackets because that is how it is portrayed in the movies. A psych ward is a far cry from the depiction in movies like “Girl Interrupted” or “One Flew Over the Cukoo’s Nest.” So the stigma is perpetuated in the movies and television which does a disservice to how therapeutic a psych unit actually works and looks. In addition to fighting to heal herself, she had to navigate through misconceptions and the pressure that adolescents go through with their peers.

Let me provide a little more context to our journey with stigma that my family experienced. My next door neighbor was recently diagnosed with cancer. She told me that she has more casseroles in her freezer than she knows what to do with. Another friend of mine, whose father has terminal cancer, decided to take his dad out of the hospital so he could spend his final days at home. He too has a refrigerator filled with casseroles. My daughter suffers from depression, anxiety and PTSD and was admitted to the hospital for over a month. WHERE IS MY CASSEROLE? Of course I’m not really looking for a casserole, but for people to understand that mental health issues should be treated no differently than other medical disorders. They should be discussed with the same compassion and thoughtfulness that people provide to those suffering from all other ailments. 

Let’s eradicate the stigma associated with mental health by seeking to talk openly and honestly about the issue. There are a few simple things you can do to help:

  • Don’t be afraid to talk about mental health, but educate yourself and embrace that this is a common disease that affects nearly all families.
  • Know that mental health is a disease, just like diabetes, heart disease and cancer.  
  • Most importantly show compassion.  It’s amazing how far a little compassion helps a family or person with mental health issues.
  • Finally, if you know someone with a family member with mental health issues, perhaps you can make them a casserole.  Here’s a helpful website to get you started.  https://www.delish.com/cooking/g1702/casserole-recipes/

1 Substance Abuse and Mental Health Services Administration
2 Center for Disease Control

Glenn Kopelson is Co-Chair of the UCLA Resnick Neuropsychiatric Hospital Patient Family Advisory Council where he works on issues to improve the patient and family experience.

Tags:  compassion  mental health  patient experience  perception  stigma 

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The Challenge of the Patient Experience in Behavioral Health

Posted By James Rosser, LCSW , Monday, April 25, 2016

The patient experience is crucial across the continuum of all health related interactions; however, perception of the role of the patient experience differs at various points along the spectrum. Behavioral health (mental healthcare, psychiatry) is an interesting point to consider.

By training and nature, mental health professionals see themselves as patient focused and in possession of empathy and caring honed to a fine degree by intentional development. Does this mean that mental health providers are inherently good at the patient experience?

Certainly, people often choose to enter mental health because they want to be able to care for a disadvantaged group of people. Systems can either nurture such values or – intentionally or not – discourage them. Mental healthcare delivery suffers from the same organizational cultures and pressure as any other part of healthcare delivery – perhaps even more so. Too often mental health is the "stigmatized "part of the system itself, sometimes by misperception of our function, and often we are financially disadvantaged. This stigmatization can increase the burden of the care givers, and that team includes administrative, support and financial areas.

So how does mental health approach the patient experience? The good news is that enormous supplies of caring and empathy actually do exist in our facilities and systems. Extraordinary care gets delivered every second of every day. Does that supply of caring become pervasive and not just limited to the treatment room? That is the question to pursue for those of us in mental health.

Some key factors that may affect delivery of the optimal patient experience in mental health are:

  • Highly regulated patient privacy and confidentiality requirements
  • Philosophical training that intentionally discourages interaction with patients outside the therapy room
  • Inconsistent approaches to treatment that inform the actions of staff differently and, therefore, guide potentially confusing responses to patients
  • A culture of "protecting” clinicians from patients between visits
  • Involuntary treatment situations, either by law or family/societal pressure
  • Universal shortages of care
  • Possible misconceptions about the true meaning of the patient experience

These issues are daunting. Some require huge societal commitments that seem difficult to obtain. Others involve introspection – something we frequently ask of our patients but forget to use in our own structure and delivery of their care. Introspection can inform us in how we may not "walk the talk” of the patient experience.

Guidance from The Beryl Institute’s definition of the patient experience is crucial to success. The question is how often that definition gets translated into operational strategies and tactics that can foster successful experiences. The same question used to round on an inpatient medical unit may well be off the mark for inpatient psychiatry (we don’t usually have call buttons!).

The importance of the patient experience as it interacts with mood disorders, eating disorders and thought disorders is no less meaningful than when a person faces surgery; however, the solution set is likely different.

Nurturing and supporting future growth of the behavioral health component of the patient experience movement is the key to creating the kind of patient care we all desire to see for our patients, our loved ones, and perhaps ourselves.

Working in mental health for over 25 years, James Rosser, LCSW currently serves as the Director of Outpatient Programs at UCLA Health’s Resnick Neuropsychiatric Hospital. He has been at UCLA Health since 1999 and has been a leader in innovation in behavioral health services delivery. He currently oversees 11 programs that provide intensive outpatient services for those with acute behavioral health issues. He is a board member of Association of Ambulatory Behavioral Health-Southern California, and a member of the National Association of Academic Psychiatry Administrators.

Tags:  behavioral health  Continuum of Care  delivery of care  mental health 

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