NE INDIANA SUPPORT GROUP- COLUMBIA CITY

[crohnsurvivor]

Hey this is my first post but i want to start a support group in Columbia City and want to know if anyone is in the area. I am so excited to start a group here in town. But i am nervous, but i just want to have something that i dont have to travel across FOrt Wayne. But i know that through all i have been through, you all know that it is hard, i want to help new ostomates and old feel that they are not the only ones.

Any suggestions?

[LeeAnn]

I commend you for your desire to form a group. It will be difficult in the beginning,but keep strong. First, I would recommend that you go to the local hospital. Go to the surgeons and the WOCN/ET nurses and get the word out that you are starting a group. Where you are planning your meeting and when. Then I would ask the local nurses if they would be willing to come to the meetings and help anyone who may be having ostomy issues or skin issues. Make your first meeting about ostomy skin issues.
I would arrange snacks of some sort, drinks, check with local hospital and see if you can have your meetings there, if they will provide the space for you to do so. And if THEY will provide the drinks, such as water and coffee. Make it at a time that is not right at rush hour, but not so late that it causes issues with getting home at a decent time. We have them at 7pm one month then alternate and have one at 2pm the next month. This facilitates many different schedules and needs.

Be patient, give it time, and don't get discouraged. If there has not been a group there, it may take some time to get the people out of the woodwork. Publicize your meetings as much as you can. Ask the local paper to put an announcement in and if they will do so for free as a public service announcement. Put up flyers in local grocery stores if you are allowed to. Ask the Nurses to let all they can know about it.

Feel free to PM me if you would like to. I wish you well and please keep us posted as to how things are going.


LeeAnn

[LindaAukett UOAA Advocacy]

LeeAnn has given you some excellent tips. And if you read between the lines, she addresses the issue of patient privacy.

Just as the medical establishment is now primed to protect YOUR privacy (admittedly, sometimes better than others) it will also protect the privacy of others. This means that you can ask all kinds of healthcare professionals to pass along information TO their patients, but you can't get patient names FROM them, unless there is a system already set up for patients to permit that to happen.

So we have to make the most effective use of information technology (which does include the flyers and posters in addition to modern electronic means). One thing to try is to get a local paper to do a story about you and/or what you are trying to achieve.

The Advocacy section of this site has a way to help you find local media outlets you can use: at http://capwiz.com/uoaa/home/ click on the 'Media Guide' tab at the top right, then enter your zip code - you'll get a list of papers, radio and TV stations, and can click thru to get contact info for their various editors. You can compose a message within that system and send it, if you want, or use the info to make more personal phone calls.

Once you are up and running, we sure hope you will affiliate your group with UOAA, so we can list you on the ASG page and make it possible for others in NE Indiana to find you. See http://www.uoaa.org/affiliation.shtml for the explanation and forms. And we are working to get these and other tips posted on the site, to make your task easier.

Good luck!

PS - keep us posted ... others here would be interested in knowing what works and what doesn't, AND we can cheer you on from the sidelines too (as Eric would say, send "mad props")