If you decide to start a support group of your own, here are some helpful tips:
- Post a notice in your public library, local community center, or other location to find people who would be interested in being part of the group.
- Check to see if there are headache or pain management programs that would be willing to help you publicize the group.
- Set up an organizational meeting. At this time, poll attendees for their preferences on location and time for regular monthly meetings, and select a facilitator and back-up co-facilitators. But don't worry about "doing it right." According to Marcia Seawell, Support Group Coordinator for ACHE, "Nothing is cast in stone. We urge groups to do what works for them. Each group takes on a personality of its own."
- At the end of the organizational meeting, be sure to establish a time and place for your next meeting.
Another way to start a support group is to work through a hospital. According to Ellen Blau, the Support Group Coordinator for the National Headache Foundation, this is the method that's preferred by NHF. She says, "We use the hospital for meetings, their public relations assistance, and speakers' bureau. They also assist with printing and postage costs. It's not a lot of money, but it can run up." A good first step is to contact the Education Director at a local hospital to see if they would be interested in sponsoring your group. The NHF will then send them a proposal and help them set up the group, recruit and train a facilitator, usually a health care professional who is also a headache sufferer as well as provide literature and other materials.
ACHE also provides comprehensive materials to start groups, recruit members, train facilitators, and provide educational materials for focus and discussion for meetings. The main distinction between NHF and ACHE in their approach, according to Ms. Seawell, is that ACHE groups are facilitated by lay people who also suffer from headaches.
More dos and don'ts about running a support group. Having organized and managed headache support groups for the past several years, Ellen Blau and Marcia Seawell have learned some lessons that can help with the success of your group.
- A support group needs strong leadership. An assertive facilitator can prevent group members from doing inappropriate things such as sharing medicine or just spending their time complaining about their pain, which could lead to the group quickly falling apart.
- Have several members act as a leadership committee who can be responsible for leading a group if one of you has a headache and is not up to the task on a particular day.
- Have a planned agenda to give your group needed focus and direction.
- Recruit constantly. ACHE will provide information on how to recruit members. According to Ms. Seawell, "Ongoing recruitment is essential for the continuity of the group. It's crucial for the group to survive."
- Encourage group members to actively support the group by taking on various tasks such as posting flyers, making phone calls, writing newsletters, or just greeting other participants as they enter the meeting. It will give them a sense of ownership.
- Don't expect perfect attendance.
Do support groups really work? According to ACHE, the best evidence that they do is that people come even when they have a headache. Ms. Seawell adds, "For most people, it's comfortable to speak because they're talking to people who know what headache pain is all about. They're in an understanding and accepting group of people. For some people it may be the first time that they've felt the freedom to talk about their pain, and some may have suffered for decades. It's a place to learn, be supported and be encouraged to cope, knowing that the group is rooting for them."