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FAMILIES as MEMBERS of the TREATMENT TEAM MAKE IT HAPPEN!. Robert Paul Liberman , M.D. Distinguished Professor of Psychiatry UCLA School of Medicine Director, UCLA Psych REHAB Program Semel Institute of Neuroscience & Human Behavior.
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FAMILIES as MEMBERS of the TREATMENT TEAM MAKE IT HAPPEN! Robert Paul Liberman, M.D. Distinguished Professor of Psychiatry UCLA School of Medicine Director, UCLA Psych REHAB Program Semel Institute of Neuroscience & Human Behavior
When families are involved as key partners in treatment the relapse rates are cut in half and remissions of symptoms are tripled By participating in treatment, families experience an alliance with psychiatrists and other treatment providers as well as a reduction in stress and the burden of caregiving FAMILIES CAN MAKE A POWERFUL THERAPEUTIC IMPACT ON THE PROGRESS OF PATIENTS TO RECOVERY 9 Months 24 Months
SEVERE MENTAL ILLNESSES ARE STRESS-RELATED WITH A “COOL” FAMILY EMOTIONAL CLIMATE PROTECTING AGAINST RELAPSE AND DISABILITY THE EMOTIONAL CLIMATE IN THE FAMILY “HOT” VS. “COOL”
Reluctance of mental health professionals to involve families in treatment assessment, planning and services: the false curtain of confidentiality Families lack of knowledge and understanding of mental illnesses with resulting unrealistic expectations, inadvertent impatience and criticism of the patient’s limited functioning and social behavior Families “trying too much” to take responsibility and personal action to bring about improvement often leads to: Giving advice Observing excessively Doing “for the patient” that translates to emotional over-involvement and discomfort with the patient’s need for privacy, personal space, autonomy, moratoriums and “social retreats” WHAT CAUSES STRESS-RELATED, OVERHEATED FAMILY EMOTIONAL CLIMATES?
BEHAVIORAL FAMILY MANAGEMENT HAS BEEN SHOWN TO BE EFFECTIVE THROUGHOUT THE WORLD FOR SCHIZOPHRENIA, BIPOLAR DISORDER & DEPRESSION HOW CAN MENTAL HEALTH PROFESSIONALS HELP FAMILIES TO LOWER THE EMOTIONAL TEMPERATURE IN THE HOME?
Patient is viewed as the only person needing services and the family is ignored or viewed as intrusive and difficult Hiding behind the false cloak of confidentiality Lack of training in structured “teaching” as therapy with discomfort having families present for education and partners in treatment: “same old, same old services” Politically correct, new fads that don’t require training are funded while family involvement languishes in the shadows of NAMI and mental health agencies WHY HASN’T BEHAVIORAL FAMILY MANAGEMENT BEEN IMPLEMENTED BY PRACTITIONERS AND MENTAL HEALTH SYSTEMS OF CARE?
POLITICAL INFLUENCE & ACTION IS POWER, SELF-INTEREST, CONFLICT & COMPROMISE JUDICIOUS USE OF POLITICAL ACTION vs. ACCEPTANCE OF THE STATUS QUO IS THE DIFFERENCE BETWEEN LIGHTNING and a LIGHTNING BUG HOW CAN NAMI, FAMILIES AND PATIENTS CHANGE THE SYSTEM? ASSERTIVE ADVOCACY AT THE FAMILY & ORGANIZATIONAL LEVELS
FAMILY INFLUENCE IS NOT ONLY WHAT YOU HAVE BUT WHAT THE MENTAL HEALTH SYSTEM THINKS YOU HAVE NEVER GO OUTSIDE THE EXPERIENCE OF FAMILIES WHEREVER POSSIBLE, GO OUTSIDE THE EXPERIENCE OF THE MENTAL HEALTH SYSTEM TACTICS FOR CHANGING THE MENTAL HEALTH SYSTEM MEANS DOING WHAT YOU CAN WITH WHAT YOU HAVE
MAKE THE MENTAL HEALTH SYSTEM LIVE UP TO THEIR OWN BOOK OF RULES & ETHICS RIDICULE AND EMBARASSMENT IS OUR MOST POTENT MEANS OF CHANGING THE SYSTEM A GOOD TACTIC IS ONE THAT FAMILY MEMBERS ENJOY AND BRINGS ABOUT CHANGE A TACTIC THAT DRAGS ON FOR TOO LONG BECOMES A “DRAG” TACTICS FOR CHANGING THE MENTAL HEALTH SYSTEM MEANS DOING WHAT YOU CAN WITH WHAT YOU HAVE (cont’d)
KEEP THE PRESSURE ON WITH DIFFERENT TACTICS AND ACTION, UTILIZING ALL EVENTS AND ALLIES AVAILABLE THE MAJOR PREMISE FOR TACTICS IS TO MAINTAIN A CONSTANT PRESSURE ON THE SYSTEM IF YOU PUSH HARD, LONG AND DEEP ENOUGH IT WILL BRING ABOUT CHANGE IN THE STRUGGLE FOR FAMILY INVOLVEMENT & PARTICIPATION, DON’T STOP TO APOLOGIZE TACTICS FOR CHANGING THE MENTAL HEALTH SYSTEM MEANS DOING WHAT YOU CAN WITH WHAT YOU HAVE (cont’d)
PICK THE TARGET, FREEZE IT, PERSONALIZE IT AND POLARIZE IT DON’T LET THE DECISION-MAKERS SHIFT THE RESPONSIBILITY OR “PASS THE BUCK” TACTICS FOR CHANGING THE MENTAL HEALTH SYSTEM MEANS DOING WHAT YOU CAN WITH WHAT YOU HAVE (cont’d)
FAMILIES HAVE THE HIGHEST QUALITY, MOST VALID AND USEFUL INFORMATION ON THE HISTORY OF THE PATIENT, PAST TREATMENT AND RESULTS OF PAST TREATMENT THEREFORE, ASSERTIVE ADVOCACY REQUIRES US TO AFFIRM….. “Do not evaluate or treat my family member unless we are involved as sources of information, in goal setting and treatment planning.” WHAT ARE OUR TARGETS FOR SYSTEM CHANGE? PRIORITIES FOR SYSTEM CHANGE FOR FAMILIES & CONSUMERS INVOLVE FAMILIES FROM THE VERY START IN DIAGNOSIS & TREATMENT PLANNING
MENTAL HEALTH PROFESSIONALS SEE AND EVALUATE THE PATIENT IN A TINY CROSS-SECTION OF TIME FAMILIES LIVE WITH AND OBSERVE THEIR RELATIVE-PATIENT 24 HOURS/DAY, 7 DAYS/WEEK WHAT ARE OUR TARGETS FOR SYSTEM CHANGE? (cont’d) COLLABORATE WITH FAMILIES & PATIENTS IN SELECTING GOALS, TREATMENTS & EVALUATING PROGRESS • PATIENTS KNOW THEIR OWN SYMPTOM EXPERIENCES, PERSONAL GOALS, PROBLEMS AND PROGRESS • PATIENTS AND FAMILY MEMBERS NEED TO CONTRIBUTE TO THE MONITORING OF PROGRESS (OR LACK OF IT) AND PARTICIPATE IN DECIDING ON TREATMENT ALTERNATIVES
SYMPTOMS – Brief Psychiatric Rating Scale, Beck Depression Scale, Target Complaint Scale SOCIAL FUNCTIONING – Independent Living Skills Survey WHAT EVALUATION INFORMATION DOES THE PRACTITIONER, PATIENT & FAMILY NEED TO RATE, MONITOR AND ASSESS PROGRESS OR LACK OF IT FOR MAKING TREATMENT DECISIONS? • Personal Hygiene • Care of Personal Possessions • Appearance and Clothing • Money Management • Social Relations with Peers and Family • Leisure and Community Activities • Illness Self-Management • Work and School
ATTENDANCE & PERSONAL GOALS SKILLS TRAINING PROCEDURE SKILLS USED IN EVERYDAY LIFE – HOMEWORK! PARTICIPATION IN THE GROUP RECOMMENDATIONS FOR PARENTS & OTHER CLINICIANS ONGOING EVALUATION OF PATIENTS’ PERSONALLY-RELEVANT, RECOVERY-ORIENTED GOALS: HOW ELSE CAN WE TELL IF TREATMENT IS WORKING? UCLA NEUROPSYCHIATRIC & BEHAVIORAL HEALTH SERVICES UCLA Psych REHAB Program Progress Report: PERSONAL EFFECTIVENESS for SUCCESSFUL LIVING Social Skills Training Group
CONSERVATORSHIP MADE POSSIBLE MORE INPATIENT BEDS FOR PATIENTS NEEDING HOSPITALIZATION MORE CRISIS HOMES FOR BRIEF INTERVENTION, REDUCING STRESS, PREVENTING HOSPITALIZATION & RESPITE FOR PATIENTS & FAMILY MEMBERS MENTAL HEALTH PROFESSIONALS TRAINED IN SITU TO USE EVIDENCE-BASED, RECOVERY-ORIENTED AND PERSON-CENTERED TREATMENTS WITH MANAGEMENT’S QUALITY IMPROVEMENT WHAT ARE OUR TARGETS FOR SYSTEM CHANGE? (cont’d)
CALIFORNIA STATE LEGISLATORS GOVERNOR COUNTY SUPERVISORS DIRECTOR OF COUNTY MENTAL HEALTH DEPARTMENT MEDICAL & CLINICAL DIRECTORS AND CEO’S OF HOSPITALS, CLINICS AND OTHER FACILITIES WHO ARE THE DECISION-MAKERS & INFLUENTIALS WHO WE MUST TARGET FOR OUR TACTICS? THE BUCK STOPS HERE! IF IT’S TOO HOT IN THE KITCHEN, LET SOMEONE ELSE DO THE COOKING!
WE HAVE A CHOICE AS AN ORGANIZATION OF FAMILIES AND CONSUMERS: “EITHER WE HANG TOGETHER OR WE HANG ALONE” IF WE DON’T KNOW WHERE WE ARE GOING, HOW CAN WE EXPECT TO GET THERE? IF NAMI DOES NOT KNOW WHAT HARBOR IT SEEKS, ANY WIND IS THE RIGHT WIND. IS IT TIME FOR ACTION IN ASSERTIVE ADVOCACY? “IF NOT NOW, WHEN? IF NOT YOU, WHO?”