Support Group Leader Kit

This ICA Support Group LeaderKit provides a comprehensive resource on how to start and lead an IC/BPS support group. 

Resources for IC/BPS Support Group Leaders

Interstitial cystitis/bladder pain syndrome (IC/BPS) support groups play a vital role in connecting IC/BPS patients with each other. In addition, many IC/BPS support groups serve as essential educational forums for both newly diagnosed and veteran IC/BPS patients. And, those who lead support groups often report that they cope better by helping other IC/BPS patients and family members.

About the ICA Support Group LeaderKit

Being diagnosed with a chronic disease like IC/BPS can be overwhelming, but talking to others who share your condition can be as therapeutic as many treatments. Many IC/BPS patients express genuine relief when they realize that other people actually share their feelings and symptoms. This ICA Support Group LeaderKit provides a comprehensive resource on how to start and lead an IC/BPS support group. The LeaderKit is rich with resources for both the veteran IC/BPS support group leader and someone who is just thinking of starting a support group.

The Basics

Getting the Word Out

When it comes to announcing your support group, get creative! Think about where IC/BPS patients may get their information. Here’s some ways to promote your group.

Physician’s Offices and Clinics

Physician’s offices and health clinics are some of the most obvious places to publicize your group. Getting the word out through this method can be as simple as making a few phone calls to physician offices, introducing yourself, and asking the staff to inform their IC/BPS patients about your group.

Consider providing these offices and clinics with something informational about when and where your meetings are held to give to their IC/BPS patients—simple flyers, brochures, post cards or business cards with information, as well as contact information where they can learn more. These offices are eager for information about the groups because it is a valuable resource to their time as well.

Local Hospital Communications

Ask if local hospitals will print information about meetings in their community education brochures, flyers, or magazines, which are then mailed to residents throughout the community.

Local Newspapers

Newspapers often have a community announcement section where you can post announcements about events in the community. (Most newspapers today have this information available in an online form as well!) Newspaper notices are free!

Online Meeting Notices

To have your meetings listed on the ICA website and included in the ICA eNews (the ICA’s online newsletter), email with your support group contact information (city, state, support group name, meeting dates and times, and contact information), if available. You can also share your meeting notices on the ICA Facebook page.

Websites and Social Networking Sites

Many support groups are utilizing the internet to spread the word about their group by creating a dedicated website or social networking site like or Follow the ICA on Twitter.

Some IC/BPS Support Groups create their own websites.

Helpful Support Group Hints

You may want to sign up for a dedicated email account for your support group through AOL, Gmail, Hotmail, or Yahoo to handle inquiries from patients. If you include your personal phone number in the contact information, consider setting “office hours” when you will be available to take calls.

Find a partner (or two) to help. Different leaders not only bring different talents to the leadership team, but if you are an IC patient as well as a support group leader, it is always nice to have someone who can take over the meetings when you don’t feel good.

To keep the cost of printing to a minimum:

  • Supply physician offices with an electronic version of your flyer or brochure so they can print them out as needed for their IC/BPS patients. Additional flyers about special topics or guest speakers at your meetings can be made on an as needed basis.
  • Order or make business cards.
  • Ask if your local print shops offer discounts to organizations.
  • Since color printing is more expensive, consider having documents printed in black ink on colored paper.

Meeting Sign-In Sheets

Finally, as you begin to have meetings, be sure to have a sign in sheet that you can use to create a mailing list for future meetings. These not only help track attendance, but the information can be added to your master contact list. Eventually, you will find you have a nice blend of newly diagnosed and veteran patients.

Meeting Facilitation

Be sure to schedule your meetings to last at least an hour, but plan on being at the meeting room at least a half hour before to set up and greet early arrivals. It is a good idea to have a sign-in sheet available to record the names and contact information of the attendees. Keeping track of meeting attendees can be valuable for creating a mailing list.

Most IC/BPS support group meetings will follow a similar format:

  • Welcome and Reading of Disclaimer
  • Icebreakers
  • Main Session
  • Meeting Evaluation

Providing Phone Support

Note: Take all suicidal threats and innuendos seriously. The National Suicide Prevention Lifeline at 1-800-273-TALK (8255) is a free, 24-hour hotline available to anyone in suicidal crisis or emotional distress. If you are concerned that a caller or member of your support group is feeling desperate, alone or hopeless, pass on this number or call on their behalf. Your call will be routed to the crisis center nearest to you. Keep the caller on the phone until you are certain that help has arrived. Be sure to stay calm even if they are not. Remember that they are the one in crisis, you are not.

Providing phone support to patients and their family members can be a very rewarding part of a support group leader’s job. The following guidelines were developed with input from veteran support group leaders Rhonda Garrett, Molly Glidden, Barb Zarnikow, and Teresa McCoy:

  • Consider establishing regular hours when you will receive calls. This information can be put on your business cards or other contact information, and can be as simple as saying you will take calls Monday through Friday from 6 to 8 pm. It can also be worth the investment to use voice mail and caller ID. If you don’t recognize a number coming in after hours, allow the caller to leave a message so that you can call them back when it is most convenient for you.
  • Try to listen more than you talk. A call from an IC/BPS patient may be a simple inquiry about meetings or it could be a call from a patient in crisis. The most important thing is to offer assurance to the caller that they are not alone. Calling you is often the first contact that they have made with another IC/BPS patient, thus breaking the isolation that they may be feeling.
  • You cannot provide medical advice and should state so right up front. Instead, be prepared to offer resources such as IC/BPS physician referrals, resources to learn more about treatments, basic diet modification, and sites offering resources such as the Interstitial Cystitis Association and online support networks. Encourage callers to talk to their medical care provider to learn more.
  • Take down as much contact information that the patient will give. Ask if you may include them on your mailing list which can include information about upcoming meetings and research updates about IC/BPS.
  • You cannot solve problems but you can offer HOPE. Patients in crises may not always think clearly. Help them determine first and second steps to take. Inquire about immediate needs and help brainstorm options not already verbalized. Ask the caller to make a commitment to one small change.
  • Assure the caller that resources are available. Some patients may be reluctant to attend face-to-face support groups, but gently remind them of the importance of talking to others who have experienced what he or she is going through.
  • You may occasionally have contact with a patient who wants to talk, but doesn’t seem to want to help themselves or they seem to repeat their story over and over. Be patient. Most patients and their families go through the various stages of grief after a diagnosis of a chronic illness. At any one time, the person may be in shock or denial, and even feel guilty, confused, depressed, or angry. Remind them that they will come to a form of acceptance someday that will include not only a pocketful of coping strategies but also a new version of what will be “normal” for them in their lives.
  • Ask about personal resources such as family, friends, and clergy. Often, people begin to establish a new support system with people they meet at support group meetings. Encourage them to be honest about their needs and to seek help from a professional counselor if necessary.
  • You may get calls from parents and spouses looking for more information about IC/BPS and the support group. They are often just as upset as someone who is newly diagnosed. They feel badly that they are unable to help their loved one. Assure them that what the patient is feeling is real and that being there to support them is a great help. Parents, friends, and spouses should be encouraged to accompany patients to your meetings.
  • If possible, follow up with the caller at a later time. This shows concern and continuity for the patient that is calling. You could follow up by phone, email, written note, or card.
  • Get help. Find a partner (or two) to help. Different leaders not only bring different talents to the leadership team, but if you are an IC/BPS patient as well as a support group leader, it is always nice to have someone who can take over the meetings when you don’t feel good.

Providing Online Support

There are a seemingly endless supply of online resources available today, most of them for free, to help you build or maintain your support group. Use them to help boost your online presence, post group announcements, advertise for upcoming meetings, and communicate on a regular basis with your members.

Create a Support Group Website

Creating a website is easier than you think. With sites like Google providing you a pre-made template, all you need to do is type your support group information into to get started.

Create a Support Group Blog

A support group blog is another way of creating a space online, similar to a website. However, it also allows blog readers to make comments on information you’ve posted, which creates a more interactive atmosphere than a standard website.

Create an Online Group

An online group is another tool to allow you to easily communicate with your group members, and them with each other. Online groups provide a space where group members can post messages, upload documents, send emails to the group, and create a group calendar.

Online Group Invitations

Not sure about who’s coming to your group? You don’t need to only rely on emailing your members. You can also use free online invitation programs to send invitations for your group meetings or special events

Other Social Networking Tools

There are many other social networking tools that you can use for your support group, whether they be for communication or socialization. Check out this list to see what some of your options are.