Top Topics from Support Group Leaders Summit 2014

Transcription

1 Top Topics from Support Group Leaders Summit 2014 The top topics discussed at the 2014 Support Group Leaders Summit are listed below with the summary from each working group sharing best practices. Sustainability of Group -- Do you have a plan for the longevity of your group? Co- Leaders? Committees? Agenda/Meeting Planning -- Ideas on topics and best practices. Outreach and Myeloma Awareness Month -- How are you reaching out to your group members and local community? Increasing awareness of your group and myeloma? Technology -- How to use it and how the IMF can help! Caregivers -- How do you support them at your meetings? What programs or information do you provide? Sustainability of Group Keep them coming back: Personal calls before each meeting. Create a phone tree or committee for the calls Refreshments promote social interaction Spotlight members as speakers to talk about who they are outside of MM -- Meet Your Members. These are good openers for an open discussion meeting, without a structured program. Assign a greeter to welcome them as they come in and show appreciation for coming If possible, be sure that everyone speaks at every meeting. Even when there is an outside speaker, allow time for patient updates. Keep it light -- humor is the best medicine. Conduct an annual survey to have programs that the members want. There is a sample survey on the Toolkit or just hand out index cards and ask them to list three topics that they want to learn more about. Have the members vote on how many meetings per year will be open discussion only. Keep the programs fresh and widely varied. Presentations don t have to all be medical topics. o Legal issues are important for all family members, not just the patient -- Updated Will, Living Will, Healthcare Power of Attorney (pick someone that you know will execute your wishes), Life Insurance beneficiaries, etc. 1

2 o Financial -- Location of all investments and insurance policies, Medicare and Medicaid paperwork, qualifying for disability, Financial Power of Attorney, more than one person signed on each account, etc. o Relaxation therapy, chair yoga, meditation, acupuncture, etc. Foster camaraderie among members with a Holiday Pot Luck Party or an off-site luncheon where there is no myeloma talk. Include family members in a picnic. Leadership/Attrition/Burnout: Ask individuals individually to help out with group tasks. Do not ask in the group setting. An engaged member is a repeat member. Rephrase the request for assistance in specific areas, not as a co-leader. Take turns leading the discussion. Create committees for specific needs: o Programs o Technology o Outreach o Refreshments o Greeters and meeting setup Standard procedures and defined and written so other members are familiar with knowledge and experience of leader o Who has key to the meeting room? o Who to call if locked out? o Who to contact for facility issues: heat/ac, plumbing, network, etc. o Committee leads and members 2

3 Agenda and Meeting Planning Program Suggestions: History of MM from a doctor: first patient, early treatment, story of Thalidomide clinical trial, etc. Pathologist to discuss how to read and interpret lab results o A nurse may be able to discuss, but a pathologist can explain why certain tests take longer than others, why they draw so much blood for certain things, even describe the machines used to determine certain results o Ask the health impact of high or low readings in certain categories, for example, which counts can cause fatigue. o Have members bring last several months of lab reports to the meeting Nutritionist for general health improvements and how to get nourishment when chemo changes taste. Millennium Ambassadors or Nurse Educators Open discussions with each member s path of diagnosis and treatment o Acknowledge and encourage new members. Ask if they are considering a transplant and ask the group to show who has had a transplant. Have a member speak at a discussion meeting about who they are outside of MM: o Career path and accomplishments o Family stories and how they support the patient and caregiver o Travel and hobbies o Bring pictures Set up a conference call with Info Line person and ask group to bring questions Show Ask Dr. Durie video and prepare a few questions to get discussion going Hospice Nurse on Living Wills and picking the right person to support you when you cannot speak for yourself. Many family members will try to rescue you when you don t want extended life support. Social events to form a community bond: o Picnic that includes family members o Off-site luncheon o Holiday Party that includes gifts for children in hospitals or other community action Medical specialists that could address MM issues o Pain specialist or neurologist 3

4 o Bone doctor or orthopedic doctor o Nurse practitioner to discuss side effects o Dentist or oral surgeon familiar with ONJ o Social worker on emotional, financial, and career impact of MM o Psychologist or therapist on coping with cancer, family impact, forgiving yourself when you need to nap! o Diabetic nurse educator (diet, medication, peripheral neuropathy, and the impact of Dex) o Physical therapist or occupational therapist familiar with MM and bone issues Clinical trial investigators on scope and history of trials o Patient protection from Institutional Review Boards (IRB) o Impact of Tuskegee Experiments on black and minority participation o The medical impact of HELA cells on cancer research o Contract terms of clinical trials: standard forms; financial coverage of care; options for changing treatment or opting out; HIPAA privacy protection, etc. Complimentary medicine o Meditation o Relaxation therapy o Acupuncture o Massage therapy Lawyer or financial planner on estate planning Understanding Medicare Part D and Affordable Care Act. Meeting Planning Written agenda in large font before meeting. Include: o Thanks to those who brought refreshments and recruit more volunteers o Background on speaker and a big Thank you o Discuss future programs o Time to introduce new members and update on current members o Remember to state patient privacy: keep discussion confidential o Disclaimer that we only exchange experiences and not giving medical advice Evaluate your meeting space. Determine if an upgrade is in order Program planning months ahead of time o Set an annual calendar Refreshments 4

5 o Volunteers to bring food each month o Food from drug reps o Donations from grocery stores, Starbucks, McDonalds, etc. Fund raising o Small scale -- donation box at meeting, next to sign-in sheet o Suggestions from IMF -- Suzanne and Ilana o Account with IMF to get tax deduction for donors o Virtual or No action fund raiser -- donate so you don t have to: do a garage sale, bake cookies or spaghetti, play golf or tennis, run in a race! Challenges Losing a member and how to remember them Small numbers at meeting and how to get people out Various levels of knowledge of the members at the meeting 5

6 Outreach and Myeloma Awareness Outreach New members vs. experienced members o Avoid repetition of basic information by showing hands of who has that experience and can talk with the new member after the general discussion. o Building trust between the different experience levels and personalities Internal and external outreach o Web page o Facebook o Calling tree o s o Newsletter o Local media: radio, television, newspaper, cable shows o Library o Pharma reps o Church newsletter o Flyers placed by members Myeloma Awareness Local and state MAM proclamations o Format from IMF o Start in January to research lead time Use proclamations to get photo with officials and use IMF press release template to distribute to media Have a 30 second elevator speech ready to be able to explain myeloma Use Ask Me about Myeloma buttons year round Capitalize on any celebrity diagnosis, i.e. Tom Brokaw Public service announcements on radio or television Promote MM awareness through hobbies or the arts Repetition is the key to continued success!! 6

7 Technology Please contact Miko Santos at the IMF for further support and info Social media o Twitter o Facebook for the group o Web site -- Miko can create o Group so co-leader can check mail o Blogs o Post meeting notice on Smart Patient site Not everyone uses modern technology. Still need old outreach forms: phone call, mailings, DVDs Printing challenges with ipad o Wireless printing o ipad cable to printer services o Mail Shots o Mail Chimp o Constant contact o Size matters: Yahoo and Google Video technology o You Tube o Skype o Face Time Myeloma Post -- revisions to come Need FAQ on ipad o Syncing devices o Passwords o Troubleshooting Projectors o Type o Connections and cables o Usage environment 7

8 Caregivers Caregiver is an extremely important part of the patient s healthcare team. They serve as researcher, communicator, moral supporter, nutritionist, cheerleader, and many other roles. To be an effective caregiver: o Don t be afraid to ask for help o Effectively manage your time o Delegate!! Or leave it for another time o Take good care for yourself o Maintain a sense of humor o Take it one day/step at a time o Know when to say no o Leave the guilt at the door! Friends and family -- Don t be disappointed by those who don t help because you ll be surprised by those who will! Get professional help as needed o Psychiatrists o Psychologists o Social Workers o Friendly bartender Watch for signs of depression and talk to your doctor about your concerns o Can t concentrate o Lack of feeling of enjoyment o Little interest in eating o Overeating o Feeling unwanted or worthless o Can t sleep o Feeling tired Caregiver organization pointers o Get phone numbers you may need in an emergency and post them where others can find them o Make a list of chores that others can help with o Lower your expectations: Good enough is good enough! o Keep medical records in an organized way - figure that someone else may need to find them/use them 8

9 Once or twice a year, separate caregivers from patients for protected discussion by each group o Caregiver session should feel safe o How do you take care of yourself? o Consider a social worker to lead the caregiver separate sessions o Take temperature in room: one word for where you are emotionally o Phone tree of just caregivers Suggest that caregivers contact each other and go to lunch or dinner together Celgene has a Caregivers handbook When introducing new members and hearing their journey, ask the caregiver for their story. Acknowledge stress on caregivers and patients. Some tips on caregiver stress relief: o Give yourself permission to step away o Find a quiet place and take 15 minutes of down time o Laughter is the best medicine: o Watch a funny movie o Spend time with friends who make you laugh o Do something for you! One hour a day -- or an afternoon a week Every meeting is important. Encourage caregivers to attend meetings with patient. Note taking is very important at doctor s appointments. Bring a list of questions. Don t be afraid to ask doctor questions or to explain his answer in terms that you can understand and write down. 9