[Editor’s Note: Last week, Postpartum Progress attended NatCon16, held March 7-9th in Las Vegas. Our Program Manager for Education and Training was invited by the National Council for Behavioral Health to attend as a “Twitter Ambassador,” live-tweeting sessions and events. We were honored to attend and thrilled to be asked to bring the patient perspective to what is the largest conference on behavioral and addiction health care in the United States. If you missed our live stream, you can catch up with these Storify collections on the following sessions tweeted by Susan Petcher and others during the event on the National Council’s website.]
“Patients are people first,” was the theme I heard echoed over and over again in each session I attended and each conversation I shared at NatCon16, the annual conference on behavioral health and addiction organized by the National Council for Behavioral Health.
It seems like such a simple, obvious idea for those of us who have lived experience, and even more obvious when you do what I do—help empower moms and families to be well. I know, through my work here at Postpartum Progress, that each and every person struggling with mental illness is not defined by it. We may be patients with postpartum depression, anxiety, OCD, psychosis, or PTSD, but we are also moms, partners, friends, and daughters. We are artists, entrepreneurs, athletes, counselors, writers, and athletes. When I can help a mom to see for herself that, even though she is struggling, she is courageous and worthy of love, time and time again it makes the path to recovery easier to navigate.
It’s not hard, though, to imagine why doctors and therapists sometimes lose sight of our need to be seen as more than our diagnoses.
Many clinicians testified at NatCon16 to the lack of resources and funding that leaves our behavioral health care system stressed. Treating patients as people, developing relationships with them, implementing trauma-informed practices, and working with them to create wellness plans takes time, staff, and money. Additionally, the shift from medical model of behavioral healthcare to the person-centered approach is relatively new, originating in the 1940’s and only recently gaining traction in behavioral health.
Some care providers or mental health centers are just not trained to think outside the established medical model, though it is encouraging to see increasing trends in person-centered care. The stigma surrounding mental illness complicates both of these factors. I hear from moms every day that wonder if they’ll ever be more than their perinatal mood or anxiety disorder. Negative attitudes about mental illness pervade the thinking of both patients and their care providers.
The National Council for Behavioral Health highlighted the need for person-centered treatment in many sessions last week. Elyn Saks spoke about the negative consequences of her forced impatient treatment for schizophrenia, the power of sharing her experiences as a patient, and specifically about how important relationships are for people with psychosis.
“Healing takes place in many forms, including [the] love of family and friends. Healing takes place in relationships,” Elyn said early in her talk.
Dr. Nora Volkow, the nation’s top neurobiologist, presented on the science of addiction; her research demonstrates that addiction is a brain disease, not a moral failing or weakness of character. Marcus Buckingham encouraged the attendees to look for and develop strengths instead of weaknesses in ourselves and those around us. Various workshops addressed the need for a deeper understanding of the relationships between poverty, race, trauma, culture, faith, youth issues, and mental health and addiction disorders. Each session built upon the concept that if we want to help people be well, we have to treat the whole person.
And while the theme of person-centered mental healthcare at NatCon16 is an encouraging sign of progress, I’d like to challenge our health care system and the National Council to continue to promote the advocacy work of the patient communities. During a session on making wellness and recovery a reality, Allen Doederlein, President of DBSA said, “The active presence of people with lived experience in the role of support and peer provider [is needed],” when asked about the most important change he’d like to see in behavioral healthcare. I was personally struck by his choice of words “active presence.” Those of us with lived-experience can offer our stories, yes. But we can also offer so much more.
Peer advocacy is increasing in all areas of healthcare, with a well-established evidence-base for its use in treatment for mental illness. For example, Mental Health America lays out six advantages to peer support services, including increased compassion and commitment to those in need, understanding of internalized stigma, a unique ability to develop peer trust, decreased sense of solitude, and an ability to model hope and holistic care. SAMSHA supports peer support services with projects and funding, based on its belief that “People with mental and/or substance use disorders have a unique capacity to help each other based on a shared affiliation and a deep understanding of this experience. In self-help and mutual support, people offer this support, strength, and hope to their peers, which allows for personal growth, wellness promotion, and recovery.” The National Council for Behavioral Health’s partnership with Postpartum Progress and other peer advocate groups on programs such as Mental Health First Aid demonstrates the organization’s commitment to engaging and empowering peer supporters.
The perinatal mood and anxiety survivors of Postpartum Progress—the Warrior Moms—decrease stigma by sharing their personal stories of struggle and recovery. We provide informal peer support in person and via social media; our two flagship events, Climb Out of the Darkness® and the Warrior Mom® Conference, create opportunities for people with lived experience to speak up and create positive change.
The volunteers who organize local Climbs in their communities tell us, time and time again, that once they share their PPD stories, their friends and family “come out of the woodwork” to say “me, too.” The nonprofit organization empowers new moms and their families with free resources and tools like our New Mom Checklist for Maternal Mental Health, our Warrior Mom® Forum through Smart Patients, and our award-winning blog. All of this was founded by moms, is run by moms, is supported by our Warrior Mom volunteers, and we grow each and every year. Peer support and advocacy work, and we’re proof.
About a year ago, when I joined the volunteer staff here at Postpartum Progress, Katherine Stone said to me that she believes in our work because of the motto, “Nihil de nobis, sine nobis,” or “Nothing about us, without us.” It struck me at NatCon that since holistic, person-centered care is a best practice in behavioral healthcare, the natural corollary of this is that those very people, who have so much more to offer than their diagnoses, deserve agency in helping guide the future of behavioral healthcare. For too long, legislators, doctors, and the medical establishment have drowned out our voices, but I am hopeful, based on my time at NatCon16, that the tide is turning.
The National Council for Behavioral Health’s annual conference made a strong argument for the involvement of patient advocacy in behavioral healthcare, and at Postpartum Progress, we’re excited to have their support.