Recovery Innovations is one of the largest employers of peer support providers in the world. Our peer workforce is about 600 strong and counting. Back in 2000, we began to identify significant vulnerability in the health of our workforce as well as the health of the people they were serving. Because peer support workers are able to engage in strong and trusting relationships with the people they serve, they began to hear their stories of healthcare dilemmas. Often the people we employed would need to work hard to “catch up” on their own healthcare after years of neglect emanating from poverty, which led to poor diets, medical care, dental care, vision care, and neglect of the chronic diseases that often accompany a diagnosis of serious mental illness. These diseases are familiar and include: diabetes, heart disease, COPD, and obesity. An example of the kind of neglect that people experience was reflected in a story told by Lori Ashcraft, Executive Director of the Recovery Opportunity Center. She had a friend who received mental health services. While this friend was hospitalized some years ago for psychiatric care, she died from renal failure. While we realize that terrible things can happen at any time, these questions haunted Lori. Would her friend have survived if the staff had not filtered every physical symptom she described through her psychiatric label? Would she have died if she had been taken to a medical hospital instead of a psychiatric hospital? What impact could she have had on her health had she received coaching to support her wellness? What contributing factors caused this wonderful friend, sister, parent, and daughter to die too early?
Though it was painful to learn, we were not surprised by the fact that people with a mental health and/or addiction diagnosis die from 25 to 32 years earlier in the United States than the general population. This fact demands our attention and action (Hoang, U., Stewart, R., and Goldacre, M. J., Mortality after hospital discharge for people with schizophrenia or bipolar disorder: retrospective study of linked English hospital episode statistics, 1999-2006. The British Medical Journal, 2011; 343:d 542; Saha, S., Chant, D. and McGrath, J., A systematic review of mortality in schizophrenia: is the differential mortality gap worsening over time? Archives of General Psychiatry October 2007, Vol 64, pp. 1123-31). Finding effective solutions must be a priority for medical and behavioral health systems of care. With universal health care, there is an opportunity to find real solutions to this significant humanitarian concern. With many individuals with significant behavioral health challenges having incomes that are more than 100% below the poverty line, the risk of early death burgeons (http://www.mailman.columbia.edu/academic-departments/epidemiology/research-service/death-poverty).
Creating solutions for this serious social problem, must take a variety of approaches. In New Jersey, Dr. Jeffrey Brenner and the Camden Coalition of Healthcare Providers is “hot spotting” high and super utilizer populations so that teams can go in and address each individual’s medical as well as social needs like housing and food (http://vimeo.com/45157824). This innovative work increases understanding of the factors that contribute to health disparity and early death. In addition, one goal of the Accountable Care Act is for people to have increased access to health care, especially primary care, which may lead to improved outcomes. It provides an opportunity for increased attention to health concerns previously neglected. Further, with the recognition that the medications used to treat behavioral health challenges carry a host of side effects that may contribute to significant chronic diseases, more attention can be given to help individuals receiving medication stay physically well (De Hert, M., Correll, C., Bobes, J., et al., Physical illness in patients with severe mental disorder. Prevalence, impact of medication and disparities in health care, Feb. 2011, Vol 10(1): 52-77). In addition, individuals on medications can be educated about the early warning signs of diabetes, high blood pressure, and weight gain as possible iatrogenic side effects that are manageable through early detection and consistent follow-up. Further, addressing smoking cessation is vital so that reduction in the heavy smoking of individuals with behavioral health challenges can be supported (De Hert, M., et al, 2011).
However, even with attention given in all these areas, creating a welcoming, safe, and supportive health care environment, known as a “healing space” (Najarian, J., St. George, L., The Power of Healing Spaces, May 2011, Peers Linking Peers.; Johnson, Gene, Healing Spaces, http://vimeo.com/45157824) is vital to the wellbeing of people with behavioral health challenges. Primary Care offices must be welcoming and healing for all people, including those with behavioral health diagnoses. Often, stigma precedes individuals who seek physical health care while carrying a psychiatric label. Sometimes people seeking help experience “diagnostic overshadowing” “when physicians attribute physical illness to mental illness and assume the person is attention seeking (Johnson, G., Wellness City: An Integrated Approach to Whole Person Wellness. SGIM Forum, 2014; 37(1). When diagnostic overshadowing occurs, the significance of the individual’s challenges may be underestimated or ignored altogether (St. George, L., Working from a Recovery Perspective in Primary Care: My Story. SGIM Forum 2013; 36(12).
Here is where the important work of Whole Health Peers can improve the health and wellbeing of this vulnerable population and ultimately help the healthcare system experience significant savings. The use of peer support is an evidence-based best practice in the care of people who receive services within behavioral health systems of care. Some results found in studies of outcomes of using peer support to help people with serious mental illnesses include “greater gains in several areas of quality of life and overall reduction in the number of major life problems” (http://www.alternatives2011.org/storage/Lane%20-%20Peer%20Support%20Outcomes.pdf). In addition, people served by peer support report “enhanced self-esteem and social functioning” (Markowitz, F. E., et al. (1996) The role of self-help in the recovery process. Alexandria, VA: Proceedings: 6th Annual National Conference of State Mental health Agency Services Research and Program Evaluation. Alexandria, VA: National Association of State Mental Health Program Directors (NASMHPD) Research Institute). A study in 2006 identified that “peer providers serve a valued role in quickly forging therapeutic connections with person typically considered to be among the most alienated from the health care service systems” (Sells, D., et al. (2006). The treatment relationship in peer-based and regular case management for clients with severe mental illness. Psychiatric Services, 57, 1179-84).
By extrapolating these outcomes of peer support, we can make assumptions about what is possible with whole health peer support. Then, the urgent need to increase and train a workforce of whole health peer specialists becomes clear. People who have recovered from the significant challenges of mental illnesses and addictions, and overcome huge internal challenges, societal stigma, and often extreme poverty are adaptable, clever, and flexible. They often know how to get things done within social service systems that are confusing and overwhelming. They have learned to be flexible and persistent. Often their journey of recovery meant overcoming internal hopelessness, as well as societal hopelessness in systems of care that did not believe in them and held no hope at all for their recovery (President’s New Freedom Commission on Mental Health (NFC) 2003, from the cover letter, Page 1). Still, these steadfast individuals found their way to recovery. Note that recovery does not mean they were incorrectly diagnosed, or that they never had a behavioral health diagnosis, nor does it mean that they will never again have mental health challenges in their life. It does mean that they may have received support and care that was effective, and that they have most likely developed their own strategies to cope with challenges they experience.
Whole Health Peers can assist individuals in accessing primary care and maintaining connections with the PCP clinic, rather than using emergency departments. Whole Health Peer Support providers can help individuals manage appointments so they don’t delay care and create more serious health challenges. In addition, whole health peers can help individuals increase connectedness to all of their care providers through the development of deserved trust and relationship with their care teams. The wording, “deserved trust” is important. Trust of providers is earned through their ability to listen to, care about, and provide kind care for individuals with a serious behavioral health diagnosis. Dismissing chest pain as anxiety when the person is having a real cardiac issue isn’t helpful and does not support increased trust (Thornicroft, G., Rose, D. Kassam, A., (2007). Discrimination in health care against people with mental illness. Int. Rev. Psychiatry, Apr, 19(2):113-22). In addition, minimizing significant healthcare risks that come with weight gain and attributing them all to overeating by a person on heavy doses of antipsychotics, is not helpful and does not support the development of relationship. Listening to an individual with sexual side effects of medication to find a way to support their intimacy needs as well as help them maintain medication adherence is important to a respectful and trusting relationship (Segraves, R.T. (2007) “Sexual Dysfunction Associated with Antidepressant Therapy,” Urol Clin of North Am Nov; 34(4): 575-9).
People with a behavioral health diagnosis make use of EDs rather than PCP offices for a variety of reasons. Too often, it’s assumed that people misuse EDs. However, a recent study on the use of EDs by people on Medicaid and Medicare, including people with serious mental illnesses, found that most often EDs were used appropriately and for urgent needs (Sommers, A., Boukus, E., Carrier, E., (2012). Dispelling myths about emergency department use: Majority of Medicaid visit are for urgent or more serious symptoms. Center for Studying Health System Change). Having a Whole Health Peer (WHP) provider to assist an individual and support them to self-advocate in the ED will lead to clearer communication and reduced stigma.
Let’s imagine a well-trained Whole Health Peer accompanies an individual into their PCPs office. The individual feels safe and supported, and the PCP team feels supported by the WHP who assisted the individual in planning for their appointment. The two of them have identified questions, dates, and concerns beforehand. The visit will be succinct and effective. People will begin to use their PCP for services more regularly. Further, if an individual gets to the ED, names their PCP, and provides a phone number, when the ED calls, that PCP will have a long-standing history with the individual, which will support accurate diagnosis and diminish stigma. With reduced stigma, there is less chance a person will end up in restraints or be sent to a psychiatric hospital rather than addressing their physical health care needs (Zun, L., (2012). “Pitfalls in the care of the psychiatric patient in the emergency department. Journal of Emergency Medicine; 43(5): 829-35).
How can a person prepare to be a Whole Health Peer Support provider? Having lived experience of recovery is not enough. However, that lived experience is the foundation. Individuals need specific training to help them develop the necessary skills to perform the job. Training must include skills that promote relationship building, self-awareness, communication, ethical standards, conflict resolution, understanding the lasting effects of trauma, supporting people who are experiencing serious challenges, as well as a host of other tools to be an effective peer support provider (Ashcraft, L., Zeeb, M., Martin, C. Peer Employment Training Workbook. (2007). Recovery Opportunity Center). Then, they need specific training in whole health care and wellness, with emphasis on documentation, and information about Medicaid and Medicare and the Affordable Care Act. In addition, they need information about how to work with a primary care team in integrated systems that include psychiatric teams, and that extend into the larger group of specialty medical providers (St. George, L., Ashcraft, L., 2014. Training for Whole Health Peers, Community Healthcare Navigators, Promotoras, and Others: A companion training for Peer Employment Training and Facing Up to Health. Recovery Opportunity Center). In addition, WHPs could provide fun and interactive classes that support increased awareness of physical healthcare needs (Ashcraft, L., Martin, C., 2011. Facing Up to Health: A guide to Self-Directing Wellness. Recovery Opportunity Center). They may need additional training to learn how to check blood pressure, heart rate, and insulin levels as well as understand how to guide someone to provide him or herself with an injection of insulin.
Even with all of this training, the most fundamental need of WHPs is to have a heart full of compassion, and the willingness to work from a recovery-focused perspective holding the hope of recovery for each individual. Understanding the health disparities among people with serious behavioral health challenges is important as we move towards universal healthcare. Supporting individuals in helpful ways and reducing the assumption that these individuals misuse EDs is facilitated through Whole Health Peers. WHPs help individuals become better self-advocates, take time to prepare for medical appointments, and learn to navigate complicated systems of care. In addition, WHPs can provide mutual level health information and support. Providing these services will result in consistent care and follow-up, reduced use of EDs, increased adherence to medications, early detection, and better treatment relationships. With proper training and preparation, Whole Health Peer Support providers can provide the kind of support needed to change the serious health care disparities and early death rate of people with a serious behavioral health diagnosis.