Starting an interstitial cystitis support group can be a very fulfilling and rewarding challenge. As the coordinator or leader of the new group, you will be involved in coordinating and facilitating support group meetings by making arrangements for dates and locations of meetings, planning meeting agendas, lining up guest speakers, designing Flyers/meeting notices, and responding to patient telephone calls. In other words, you will most likely be wearing several hats!
We have assembled this information for you, to help you to get things started. We hope that you will find it to be useful as you plan your new support group.
One of the first things to consider when planning to start an IC support group is making concrete arrangements for a regular time and place to hold the meetings. Most people find that meeting once a month (schedules permitting) is sufficient to keep optimum interest and attendance. Others decide to meet every other month. Right from the start, determine what your schedule will be, for example - every 3rd Thursday evening of the month from 7 to 9 pm. This will help you when you are trying to secure a meeting room.
Many hospitals, medical centers, physicians' office buildings, churches, libraries, and community centers provide rooms for support groups for little or no charge. Be prepared with your specific request and have information on IC handy when calling to request a meeting space. You will be surprised at how quickly you'll be able to secure something! Some things to consider are: the size of the room, proximity to a restroom, handicap accessibility and how many major access roads are close to the building. It is best to find a meeting place, and then stick with it. In other words, try to have your meeting at the same location each time.
Planning for your meetings is an important step in assuring the success of your group! You goal is to have your IC support group be as informative and supportive as possible. However, unless you are a trained professional, you should be diligent in keeping the group from evolving into a therapy session.
One of the best ways to prevent this from happening is to assign each meeting a specific topic, and then stick to that topic throughout the entire meeting. You can check with the ICA's web site at http://www.ichelp.org/ for information which can be downloaded, copied and disseminated on certain subjects of interest. Additionally, you can pass out ICA Resource Materials Guides to group members so that they may order additional information on a given subject.
The following is a list of popular topics:
Diet & Nutrition, Pharmacology & IC Treatment, Alternative & Complementary Medicine, Physical Therapy, Current IC Research, Sexuality, Stress Reduction, Self-help Techniques, Vitamins and Minerals, IC & Pregnancy, Preparing for a visit to your Doctor, Pain Management, Traditional Treatment Options, Etiology, Getting to Know Each Other, Disability, Maneuvering the Health Care System.
Another very popular support group format is to schedule an invited guest speaker who will present information on a special topic of interest to your group's participants. Physicians, nurse practitioners, physical therapists, pharmacists, urologic nurses, political representatives, health insurance professionals, attorneys knowledgeable about disability cases, or any other trained professional who has an interest and knowledge of IC, can make for an excellent and engaging group meeting.
Lining up guest speakers may sound like a daunting task, but it can be as easy as placing a phone call. Most speakers will be more than willing to come to your meeting without charging a fee. Your meetings are a great place for the speaker to introduce their services to a large number of possible clients. IC support group meetings should be an atmosphere for sharing experiences; however, by making sure that the group remains focused on the topic at hand the group will end on an "upbeat" note. Patients should never leave a support group meeting more depressed than when they arrived!
It has been the ICA's experience that IC Support Group Meetings should be unbiased educational forums, not sales pitches for unproven product claims, or product endorsements. You may want to avoid scheduling guest speakers for your meetings whose sole intent is to sell their product or service to your meeting participants. Likewise, you may want to discourage individual members of your group from selling their own products and/or services to your meeting participants. Remember to keep the focus of your group on proven information and support, and not on the selling of untested products and/or services.
Once you have established a meeting place and time, you will need to design a flyer in order to publicize your meetings. This is a necessary step in reaching your target audience. A sample flyer is enclosed in this packet, but yours can look any way you want it to, as long as it is eye-catching, easy to read, contains all the pertinent meeting information, and serves this primary purpose: To get the word out!
Many urologists will post a well-designed support group notice in their reception areas. They will also often pass them out to their IC patients as they finish their appointment. Other useful publicity resources include community bulletin boards (at libraries, hospitals, medical office buildings, schools, town halls, supermarkets, etc.); free public service announcements in newspapers; local access cable TV; local radio public service announcements; "throwaway" papers such as Pennysavers; hospital newsletters; and/or any other media in your area that offer free announcements to nonprofit community groups. Remember that you can give meeting notices to anyone in the medical community who treats IC patients. This includes Pain Management Specialists, Urologists, Gynecologists, Nurse Practitioners, Chiropractors, Physical Therapists and Family Practitioners.
You can also reach a large number of IC patients by posting your group information on the ICA Web site. Many IC patients check with the ICA Support Group Listing to find support in their area. The ICA's toll-free operator (1-800-HELP-ICA/1-800-435-7422) also provides patients with support group information over the telephone. This information comes directly from our Web site listing which is updated regularly.
In order to get your group on our Web site, all you have to do is provide the following information to us in writing or through email:
Your Group Name
Location (City & State)
Contact Name and Telephone Number and/or Email Address
Group Schedule (Date & Time)
Meeting Place
You can send your listing to us through the mail at: Interstitial Cystitis Association, 110 North Washington Street, Suite 340, Rockville, Maryland 20850, or through email at ICAmail@ichelp.org. If you choose to post your group on the ICA's Web site, be sure to keep the ICA informed of any revisions to your information.
Once you have held your first meeting, it is important to maintain the group's momentum by continuing to advertise. You can use the information on your sign-in sheets to promote future meetings via email, snail mail, or telephone. While post cards are the most economical form of snail mail, it is probably best not to use them, since many IC patients have privacy concerns and may be uncomfortable receiving IC information that arrives outside of an envelope. Don't forget to do a fresh announcement flyer for each new meeting and post it in as many public venues as possible.
As the leader of an IC Support Group, you will most likely be receiving telephone calls (and emails) from IC patients. This can be the most time consuming aspect of managing an IC Support Group. Patients will call for any number of reasons, from asking for directions to the meetings to seeking support through a crisis. Many support group leaders seek help in handling these patient calls. After you get to know your group members, you may find one or two who would do a good job of fielding some patient calls for you. They can take over this aspect of the support group for you. Many knowledgeable patients, who spend time at home and enjoy being on the phone or on the computer, will volunteer their assistance in answering phone calls and email messages for you.
Should you come in contact with a patient who needs more information or support than you can provide, you can give them the ICA's toll-free number at 1-800 HELP-ICA (435-7422). The ICA's toll-free operator has the experience and training necessary to provide IC patients with all types of information and support. You never have to feel like you are going solo with your support group. The ICA is available to provide you with help and information when you need it!
In order to avoid any issues of liability, it is important to make sure that everyone attending your meetings understands that you are not a medical authority and that they should always consult with their treating physician before making any change in their treatment plan. Even so-called "natural" remedies can be as potent as prescription medications, and can have just as many side effects. When you have support group speakers who advocate the use of particular treatments or supplements, you must be sure that everyone understands that you are not advocating the unsupervised use of these treatments or supplements. It is important to read aloud the disclaimer statement before (and perhaps after, as well) every meeting, and to print it on all handouts that you distribute.
Thank you for your interest in starting a local IC support group. Best wishes for the success of your group! Please contact the ICA for help and information on how to obtain resources for your group. We are here to help you support IC patients and their families.
Is the role of support group leader right for you? You may want to ask yourself the following questions:
1. Are you knowledgeable about IC diagnostic procedures, therapies and current research?
2. Are you comfortable facilitating group discussions and speaking in public?
3. Do you live in an area where you could recruit/obtain speakers with an expertise in issues of
interest to IC patients?
4. Are you capable of taking phone calls from local IC patients who need support and understanding?
5. Are you able to organize and run approximately four IC support group meetings per year?
If you answered "yes" to these questions, then you may be ready to start your own IC support group!
To help you with the many aspects of planning and facilitating an IC support group, the ICA has created an IC Support Group Starter Kit just for you. This comprehensive Kit contains so many resources that will help to make your life easier as an IC support group leader.
Each Kit contains:
- The ICA General Brochure
- The ICA Self-Help Brochure
- The ICA Diet Brochure
- ICA Treatment Guidelines Fact Sheet
- Finding the Right Physician for You Fact Sheet
- How to Start an IC Support Group article
- A Sample Disclosure Statement to be read at your meetings
- A Sample Meeting Announcement/Invitation
- A Sample Sign-In Sheet
- An ICA Resource Materials Guide
- And, a Discounted resource order form for you and the members of your group
This information-packed Kit is only $10.00, which helps us to cover the cost of printing. To order your IC Support Group Starter Kit today, please click here!