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Clinician, Family, Peer Perspectives Network Session. National Education Alliance Borderline Personality Disorder Mission. “ NEA.BPD National Education Alliance for Borderline Personality Disorder
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National Education Alliance Borderline Personality DisorderMission “NEA.BPD National Education Alliance for Borderline Personality Disorder is a nationally recognized organization dedicated to building better lives for millions of Americans affected by Borderline Personality Disorder (BPD)”
National Education Alliance Borderline Personality Disorder Approach To enhance the quality of life for those affected by this serious but treatable mental illness NEA.BPD: works with families and persons in recovery raises public awareness provides education to professionals promotes research works with Congress
National Education Alliance Borderline Personality Disorder Not-for-profit (501 3(c) organization conceived August 2001 Chartered by the Board of Regents of the State of New York Co-founded by four family members, two consumers, one mental health professional All funding and donations support programs An all-volunteer organization
The Sashbear Foundation Raising awarenessthrough School talks on BPD Raising awareness through The Borderline Walk Join us on twitter @SashbearOrg Peer supportthrough Family Connections Improving access to carethrough expanded DBT services Networking at conferences
Hope for BPD • The mission of Hope for BPD is to educate persons diagnosed with borderline personality disorder and their families about evidence-based treatment. • The goal is to help connect people with compassionate clinicians and great treatment programs globally so they can make smart health care decisions.
CLINICIAN PERSPECTIVES Perry Hoffman, PhDNational Education Alliance for Borderline Personality Disorder
Improving Communications: Select Initiatives Conferences: 60 national and international events Call-In Series; ~75 one-hour presentations Website : ~200 audio and video recordings Courses Online course Residency workshop at American Psychiatric Association Books American Psychiatric Association Gunderson & Hoffman Haworth Press Hoffman & Steiner-Grossman New Harbinger Hoffman and Gunderson (in press)
Improving Communications: National Collaborations Congress House Resolution 1005 (2008): May Awareness Month New York State Office of Mental Health (2012, 2013, 2014) SAMSHA Report to Congress on BPD (2010) Stakeholders’ Meeting (2011) NAMI Priority Population (2006)
FAMILY PERSPECTIVES Joy Sprague National Education Alliance for Borderline Personality Disorder Lynn Courey, CSW Sashbear.org Making Waves on BPD
Improving Communications: Family Connections 12 week, multiple-family group program Family members: parents, partners, spouses. adult children DBT & family skills and strategies Standardized, semi-structured manual with teaching notes Structure:1. homework review2. teaching 3. sharing/consultation -------------------------------------------------------------------------------------------------------------------------------- Co-led: Family members and professionals trained by NEA.BPD Community-based, no charge
WHAT MAKES IT DIFFICULT FOR FAMILIES • Wishing our life circumstances were other than what they are • Having high and unrealistic expectations • Lack of effective skills • Grief • Stigma
Improving Communications: WHAT HELPS US BUILD A LIFE WORTH LIVING AND COPE • Self Care • Radical Acceptance • Non Judgment • Mindfulness • Skills • Validation • Hope • Unity • Advocacy
PEER PERSPECTIVES Amanda L. Smith, LMSWHope for BPD Cathleen Payne, JD
Improving Communications: Family Members and Friends as DBT Skills Coaches • Learning DBT helps everyone • Family members and friends can help by • Understanding the language of DBT • Using a diary card • Talking openly about how they are using the skills • Being role models of skillful behavior
Improving Communications: Consumer Perspective • Recognize when you are “dysregulated” • Learn to “take a break” and breathe - use your DBT Skills • Try not to talk when you are angry - think about all the times you have talked and injured a loved one which you later regret • Come back to the topic after you have cooled down enough to say how you were feeling when something happened • Remember to listen to your loved one’s feelings too - even if it’s painful - you can stand it for 60 seconds! • Repair as needed • Say “I’m sorry for my ...(harsh tone, loud voice, sarcasm)” • Validate: “I can understand you feeling hurt, angry, afraid” • Say what you can do differently in the future
ALL PERSPECTIVES SUMMARY • We’re all in this together • Balancing needs of family, loved one and clinician • Validate, validate, validate • Be mindful of our perspective and other’s perspectives • The power of being understood • We’re all working together
Clinician, Family, Peer Perspectives Discussion Period