We frequently receive calls for information on local support groups. Support groups provide a valuable service not only for counseling and support, but also for socializing and information sharing. "Old timers" have information to share with newer injuries, and groups have more influence with vendors or medical professionals to present information and products. If there is not a support group in the area, people frequently ask how they can start one in their area. The process of beginning a support group can initially seem daunting, however, it is easier if we break it into little pieces – this is called the five P's:
Step One - People
Contact the office and ask for Kate. Tell Kate that you are interested in starting a PSP support group network. She will do a data base query about the PSP population within a reasonable traveling distance. You will be contacted back with the numbers to make sure this is a feasible endeavor.
Step Two - Place
Decide on a central public location. In many areas transportation is a major problem. A rehab hospital can provide a good location. The location should, of course be accessible, with plenty of parking and accessible via wheelchair accessible transportation if possible. Don't forget to make sure the bathrooms are accessible. Some people may be tempted to have a rotating meeting place to make the meeting more accessible to people with transportation problems. This has potential problems. A potential problem is that the group becomes fragmented because only certain people attend certain meetings. Also, unless the meeting locations are well publicized in advance, people may forget where the meeting is and decide not to attend. With the same location, people always know where to go.
Step Three - Time
It is usually better to meet on a Saturday or Sunday in the afternoon and it is a must that there be a planned meeting calendar. Being there myself, I know that if a PSP family needs to make arrangements, they need to be done ahead of time.
Step Four – Publicity
CurePSP (the Society for PSP) will send out your first meeting announcement signed by both the support group leader and the Director of Outreach and Education. (See in comments below) Publicity is crucial to a beginning support group. It is important to leverage all available media (especially free outlets).
For example:
Newspapers usually have a place to announce support meeting and clubs;
Make up a flier announcing the meeting. You're not writing the great american novel here, so just give people the basics - date, location, time, and a brief description of the purpose of the group. Remember, if you're putting the flyer up in a public place you may have only 2-3 seconds to get a passerby's attention, so use large type and few words. CurePSP (the Society for PSP) will distribute the flyer to all the people on the mailing list.
Step Five - Programming
So what will you do in your meetings? If your meetings will have an educational component to them, then planning the meetings will require additional effort. Ask participants what they would like to hear about. The attendees are an excellent resource for information, each of us has special skills and insights on certain topics that others may be interested in.
Plan a time for people to just hangout either before or after the meeting, and make sure that people don't leave without signing up with their address and telephone number. Not only does this keep your mailing list up to date, but it also allows your support group to grow.
Printable version
Step One - People
Contact the office and ask for Kate. Tell Kate that you are interested in starting a PSP support group network. She will do a data base query about the PSP population within a reasonable traveling distance. You will be contacted back with the numbers to make sure this is a feasible endeavor.
Step Two - Place
Decide on a central public location. In many areas transportation is a major problem. A rehab hospital can provide a good location. The location should, of course be accessible, with plenty of parking and accessible via wheelchair accessible transportation if possible. Don't forget to make sure the bathrooms are accessible. Some people may be tempted to have a rotating meeting place to make the meeting more accessible to people with transportation problems. This has potential problems. A potential problem is that the group becomes fragmented because only certain people attend certain meetings. Also, unless the meeting locations are well publicized in advance, people may forget where the meeting is and decide not to attend. With the same location, people always know where to go.
Step Three - Time
It is usually better to meet on a Saturday or Sunday in the afternoon and it is a must that there be a planned meeting calendar. Being there myself, I know that if a PSP family needs to make arrangements, they need to be done ahead of time.
Step Four – Publicity
CurePSP (the Society for PSP) will send out your first meeting announcement signed by both the support group leader and the Director of Outreach and Education. (See in comments below) Publicity is crucial to a beginning support group. It is important to leverage all available media (especially free outlets).
For example:
Newspapers usually have a place to announce support meeting and clubs;
Make up a flier announcing the meeting. You're not writing the great american novel here, so just give people the basics - date, location, time, and a brief description of the purpose of the group. Remember, if you're putting the flyer up in a public place you may have only 2-3 seconds to get a passerby's attention, so use large type and few words. CurePSP (the Society for PSP) will distribute the flyer to all the people on the mailing list.
Step Five - Programming
So what will you do in your meetings? If your meetings will have an educational component to them, then planning the meetings will require additional effort. Ask participants what they would like to hear about. The attendees are an excellent resource for information, each of us has special skills and insights on certain topics that others may be interested in.
Plan a time for people to just hangout either before or after the meeting, and make sure that people don't leave without signing up with their address and telephone number. Not only does this keep your mailing list up to date, but it also allows your support group to grow.
Printable version