National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Patient and Family Engagement

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Why is it Important? No one gets through a serious illness by themselves No one should be discharged from the hospital without someone with them to hear the directions and ask questions No one manages their illness well if they don’t understand their illness or the treatment plan

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness NAMI Survey of People who had been Hospitalized Get well cards – 25% Visits from family – 86% Visits from friends – 45% Have an easy time staying connected – 34%

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness NAMI Survey Involve family and friends in recovery – 35% Involve in treatment plan – 25% Have someone with me at discharge – 27% Encouraged to sign a privacy release – 27%

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness NAMI Survey Provided me with info about my illness – 39% Provided me with info about my meds and side effects – 43% Had input into my treatment plan – 41% Was listened to – 45% Offered hopeful words about recovery– 40%

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness I would have liked to have more information on my new medication when I first started on it, instead of getting it from Target Pharmacy after I got out. Treat me like a patient with an illness, not like I am incapable of making good decisions. Due to my mental illness, physical symptoms were disregarded as figments of my imagination.

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness NAMI Survey Families Sign a privacy release – 38% Provided information on illness – 27% Info on meds and side effects –26% Taught me what to do to help –11% Had input into treatment plan – 31% Showed empathy – 40% Hopeful words – 34%

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness We had to ask if they had a video or something to read to help us when our 18yr old son was hospitalized while he had been in college -there was no support for us as parents. We had to find that on our own and in our own community They could have included me, consulted with me, and not dismissed me.

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Parents who are obviously the ONLY other contact of patient should be included in treatment/care/discharge. More descriptions of the unit, rules, population, etc. It was my son's first time in an adult unit. Staff could have treated me like a caring parent - just like they would for a child with cancer,

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Recognize the Importance of Families & Friends Family is not an important thing, It’s everything - Michael J. Fox

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness What Families Provide Social support - improves physical health, helps with resilience and better quality of life Practical help - transportation, housing, food, finding and keeping jobs, money, make appointments, fill medications, monitor stress,

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness What Families Provide Advice, knowledge and encouragement Recognition of early warning signs Record keepers Understand person’s strengths, talents and preferences Advocacy for person – in the hospital and with the insurance company, county, etc.

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness What Families Need Encouragement to maintain hope Validation of worries/difficulties Respect and empathy Honest and caring communication

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness What Families Need Resources and information To learn and ask questions Access to education and support Information about the mental health system

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Why Families Want Information Reduce anxiety and confusion Determine appropriate expectation for their loved one Learn how to motivate their relative Find out about mental illnesses Assure accessibility to a professional during a crisis

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Why Families Want Information Understand the diagnosis and prognosis Understand symptoms, medications and side effects Get specific suggestions for coping with symptoms Deal with practical issues Make contact with peer support groups

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness True Family Engagement Include families in discharge and treatment planning Seek information from families about the history, background of their relative’s illness Inform families of shifts in treatment strategies and changes in medications

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness True Family Engagement Give timely reports on how things are going Consult with and inform families about possibilities for improving their relatives condition Establish clear open channels for family complaints and grievances

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness True Family Engagement Listen to their concerns Assess the strengths & limitations of the family Address feelings of loss Help improve communication among family members Encourage expanded support networks

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness HIPAA v. Families Families perceived as overprotective or unengaged Families don’t want access to medical records but to information They want to provide information to you and obtain information to help their loved one in the community

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness HIPAA v. Families Family Involvement Law HIPAA allows professional judgment Ask questions and involve families in the beginning – ED evaluation Ask questions and involve families at the end – discharge planning

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness HIPAA v. Families Proactively ask for privacy releases Ask more than once Ask if you can share certain information Provide general information Can assume consent if patient in room and allows you to discuss situation

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Understanding Discharge Plans Are they realistic? Understandable? Who can do what in terms of transportation, in-home services, checking medicine cabinet, obtaining new prescriptions, etc. Teach Back – include family if possible

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Patient Engagement Identify support network Teach them about their illness Teach them about the treatment plan Involve them in changes in medication

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Patient Engagement Partnering and decision making Reflecting on pros and cons Need enough information in order to made decisions How do they want others involved in the decision making

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Focus on Recovery –Social –Physical –Emotional –Spiritual –Occupational –Intellectual –Environmental –Financial Focus on eight dimensions of recovery

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Patient Engagement TRIP MAP Think about problems, pressures, people & priorities Research facts and possible solutions Identify options Weigh the pluses and Minuses for each option Action planning Ponder the results of the decisions

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Community Resources Family psycho-education classes Support groups for the person with a mental illness and family members Written resources Advocates

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness Patient & Family Engagement If everyone is on the same page, it’s easier to move forward.

National Alliance on Mental Illness MINNESOTA National Alliance on Mental Illness NAMI Minnesota 800 Transfer Road, Suite 31 St. Paul, MN NAMI-HELPS