Starting an IC support group can be a fulfilling and rewarding challenge. Here's a four-step approach:
Coordinating and facilitating a support group: Start by 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. Email the ICA with the meeting information and we will post it in the Support Group Meetings section of the ICA website.
Planning meeting agendas: 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. Check with the ICA's web site at www.ichelp.org for information to download, copy and handout on key 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 and nutrition
- Pharmacology and IC treatment
- Alternative and complementary medicine
- Physical therapy
- Current IC research
- Sexuality
- Stress reduction
- Self-help techniques
- Vitamins and minerals
- IC and pregnancy
- Preparing for a visit to your doctor
- Pain management
- Traditional treatment options
- Etiology
- Getting to know each other
- Disability
- Maneuvering the healthcare system
Lining up guest speakers: 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.
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.
Distributing flyers and meeting notices: 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 website. Many IC patients check with the ICA Support Group Listing to find support in their area. The ICA's toll-free operator (800-HELP-ICA or 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. To get your group on our Web site, email us the following information:
- Your Group Name
- Location (City & State)
- Contact Name and Telephone Number and/or Email Address
- Group Schedule (Date & Time)
- Meeting Place
Responding to patient telephone calls and emails: 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 (800-435-7422). 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!