Created:
Jan. 27, 1999
Revised:
July 16, 2004
by JHO
How to Start An IC Support Group
So you'd like to start an IC support group! We commend your interest. Support groups offer the IC patient and family hope and encouragement, particularly newly diagnosed patients who are searching desperately for relief and companionship.Running a support group isn't as easy as it sounds. You should have a thorough understanding of the issues before you dive into the process. From fundraising to guest speakers, public relations to suicide support, your cause is a noble one that requires a pro-active, balanced and enthusiastic leader.
- Assess the need for a group in your area
- Assess your personal strengths and outlook
- Select your affiliation
- Getting started
- How often should you meet?
- Welcome Letters & Meeting announcements
- Programs, topics & guest speakers
- Memorize your disclaimer
- Communicating with local physicians
- Communicating with the press
- Suicide Support
- Think Big - Special Events
- Avoiding Group Leader Burnout
- Conclusion
#1. Assess the need
Is there a support group already near you? Ask your local doctors, review the ICN group listings and/or ask your national IC organization if there is one in your country. Visit that support group first. If it feels good, is encouraging and hopeful, then you may want to ask if you can help in that group. There's no reason to duplicate efforts and every support group can use a helping hand, provided that you support the philosophy and goals of the group.
#2. Assess your personal strengths and outlook
Being an IC support group leader requires that you have the right outlook, attitude and time to commit to the cause. Perhaps the best way to look at this issue, is to look at some of the common criticisms that have faced support groups around the world.
- "The meeting
was too depressing. I just couldn't go back." - Member retention
will be based on your ability to present positive, encouraging and hopeful
meetings. Rather than being "pity parties," successful groups find ways
to get involved and causes to be involved in. We spend far less time
focusing on an individual group check in, and more time talking about
the next event that we want to do. We use our time with a deliberate,
active, goal in mind.. even if it's planning an IC safe lunch for the
next meeting.
- "When I talked
to her on the phone, she wouldn't listen to me.. all she did was talk
about her own problems." - An effective IC support group leader
listens, rather than talks, especially when they are on the phone with
someone in crisis. This is not the time for you to tell your horror
story about IC. It is the time for you to offer compassionate, supportive
words.
- "She only
talked about her treatments." - Your personal experience with
IC is, honestly, not relevant to the group as a whole because IC is
so uniquely individual. You should not position yourself as an expert
in anything other than your own personal experience. The key to understanding
IC patients is to understand that each person has a unique journey with
IC. Your job as a group leader is not to influence any particular treatment.
Your job is to talk about the many options available (including pro
and con information) and then encourage IC patients to be active participants
in their own medical care. This means that you give them a nudge.. and
then let them begin researching IC and talking with their doctor. "My
way is the right way" is a wrong and potentially dangerous attitude
to have.
- "The only
time I heard from my group leader was when she needed money. They never
really did anything for me." - The worst impression you can
make is to ask for money every single time you talk with someone. Even
once a year phone calls create annoyance and distrust, particularly
if that person doesn't have any activities to go to. So, a good support
group leader looks for interesting speakers and topics. They make their
meetings educational programs to encourage people to attend. They try
to cover diverse interests and to show that any donations to the group,
whether big or small, are having a direct, local impact on the patients
in your city.
- "She let
someone talk endlessly. I never had the chance to participate."
- Support group leaders are like traffic cops. Not only will you role
model proper behavior during a support group meeting, you will also
facilitate the meeting. You will create the agenda. You will move the
topic along if needed. You will step in and try to turn a negative situation
into a "what can we all learn from this experience" opportunity for
growth. You must learn to be assertive, yet in gentle, kind and supportive
way.
#3. Affiliation
In North America, you have the choice of being an independent support group or a support group affiliated with medical center or hospital . (Please note that the ICA USA and Canada IC Society no longer offer IC support groups). Let's take a look at the pros and cons of each one.
- Independent
support groups may qualify informally as a non-profit in the United
States (refer to the Nolo Press
book "The Non-Profit Corporation Handbook for more information on non-profit
structures). Similar to local private clubs or social groups, there
would be a group leader and volunteers who can help out with various
tasks, such as a treasurer and our meeting coordinator. Usually, these
budgets are very small (i.e. $50 a month or less) and the money is collected
in a jar during each meeting. This money is used only for meeting announcements
and the rare long distance phone call. Banks may not give you a free
account unless you are a formal non-profit, so the money is entrusted
to one person who will never have more than a minimal amount at one
time, and as needed. As an independent support group, you will look
for meeting space (perhaps in a library) for your meetings. In addition,
you will gather your IC information from a wide variety of sources,
such as the internet, medical journals and/or urology newsletters.
- Hospital or
Medical Center affiliated support groups have the benefit of facilities
and guidance from a sponsoring doctor. They usually use meeting facilities
offered at no cost by their medical center. Again, budgets tend to be
very small. While some hospitals underwrite the expenses of the group,
others conduct their own fundraising again, usually, using a collection
jar during meetings. You may have a wider variety of potential speakers
from your medical center and, if possible, have the opportunity to create
educational seminars for health care personnel. You may also have a
therapist, on staff, who is willing to supervise and/or offer guidance
for your meetings.
Our preference goes to a hospital affiliated support group. The benefits of having free meeting space, as well as a local physician supporting your activities, allows you to focus on the needs of patients and care providers in your region. We have a pretty radical idea of support group activities. In addition to providing patient support, we also think that you have the responsibility to create opportunities for your local medical care providers to be trained in IC. With a hospital affiliation, you can do this far more easily.
#4. Getting Started!
Well, you've made the choice and you have your affiliation. Now, how do you spread the word that you have a new support group? If you're hospital affiliated or independent, you'll need to spread the word to local doctors, urologists, gynecologists etc. that you're group is getting started and you'd like to offer your group to other local IC patients.Your first task is to find a co-leader or two. You first letter can not only announce the formation of your group but also your desire to look for other patients who want to get involved. The more hands you have to help you, the easier meetings will be covered, especially if you are under the weather and can not attend. Best of all, having co-leaders allows you to split your responsibilities. For our group, one co-leader handled the money and was able to get us a free checking account. One did the announcements and shared meeting facilitation with the third co-leader.
Who is a good co-leader? Someone who is equally concerned about the same issues. They should fit well with your goals and priorities that we've listed above. If someone volunteers to be a group leader but then doesn't follow through, then keep looking until you find that gem!
#5. How often should you meet?
Our local support group began with quarterly meetings. However, we were asked by our membership to go to monthly meetings because they wanted more support. This can be a very demanding schedule if you don't have other co-leaders, particularly during the winter months when travelling is difficult. After two years of doing this, we noticed that our attendance actually decreased. So, we compromised on our meeting schedule and decided to meet every two months. That has worked well!We usually meet on a Sunday afternoon, for two hours from 1-3 pm. We don't hesitate to cancel meetings if travelling conditions are poor. To make sure that everyone is informed of any last minute changes, we ask everyone to confirm the meeting by calling our message line 24 hours ahead of time.
If there are any other support groups within 100 miles of you, make sure that you are considerate of their times. Don't hold meetings on the same days or weekend. Try to stagger them so that people have the opportunity to participate in both settings.
#6. Websites, Welcome Letters & Meeting Announcements
When
you first begin your support group,you will want to share some basic details
on your group, such as your meeting schedule, contact numbers with doctors
in your community, nurses and, of course, your own members. With the internet,
it's now very easy to build a basic web site that will share your meeting
schedule, etc. etc. Many support groups now have them, including IC RE.
If you don't already have someone who can build it, we're happy to give
you space for a small site on the IC Network website. You can also
raise money for your group by becoming an ICN affiliate for our store!
Here are some current websites:
IC
Redwood Empire
Citrus Valley IC Support Group
The Orange County CA IC Support Group
San Diego IC
Support Group
Meeting announcements can be done by phone, by post card or by newsletter. In our local group, we wanted to make sure that patients who were too ill to attend meetings had more than just a post card. We created a mini newsletter (1-4 pages) that discussed new research, self help and meeting announcements. We recommend this highly if you have a good writer and/or desk top publishing volunteer.
Two
Page Meeting Announcement Sample (2004)
Postcard Sample
Postcards are cheaper and we use these occasionally too. We get the US Post Office post cards and then, on the back, place a laser printed shipping label that has the meeting information. You can get an amazing amount of information on a 3" by 4" label with some creative typesetting.. and you won't have to hand address fifty cards at one time.
#7. Programs, topics & guest speakers
There are many topics that you can cover in a support group. For our meetings, we usually reserve the first hour to our speaker & Q&A. We then take a ten minute break and then move into our group activities. We usually begin this portion of the meeting by asking group members a unique, positive and/or goal oriented question, such as:- "Tell us one thing that you've done in the last month that you're really proud of?"
- "Share with us a success that you've recently had."
- "What coping tip has worked best for you?"
- "If you could have done one thing differently, what would it be?"
- "What's one suggestion you offer about working with your doctor?"
Good meeting topics may include:
- pain management & ic (medical AND self help strategies)
- IC treatments
- self help strategies
- diet and IC (with IC safe recipes to try)
- how to work with your doctor more effectively
- IC and your family
- sex and IC
- physical therapy and movement with IC
- pelvic floor and IC
- understanding bladder conditions
- men with ic
- spouse support
- anger management
- relaxation and visualization (mindfulness)
- watching videos or listening to tapes, as available from various organizations
- IC safe exercise
- disability insurance (state versus national insurance), applications & appeals
- planning for a regional event
- the latest IC research announcements
#8: Memorize your disclaimer!
To legally protect yourself you must use a disclaimer at every meeting and in all of your correspondance. Memorize and use it regularly. Don't ever take it for granted. A common disclaimer is:"IC-Redwood Empire is not a medical authority nor do we offer medical advice. In all cases, we strongly encourage to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."
As you develop your disclaimer, take a look at the disclaimers offered by a variety of support groups and medical web sites. You can probably find a format that you are comfortable with. If you have an attorney, have them review it too. Essentially, you must ALWAYS encourage IC patients to talk with their doctors before trying anything they hear at a support group meeting. If you don't, you can potentially endanger a group members life.
You must also clearly understand that you cannot and should not give medical advice. If some asks you what you are taking and how much, you can let them know the name of the drug, but then encourage them to talk over dosage and any risks of treatment with their personal physician. Also, you can direct them to research studies in the ICN research library which may also discuss treatments and dosages used in research studies. You should NEVER give any personal dosage information, even for vitamins, herbal strategies and supplements.
#9. Communicating with your local physicians.
The physicians in your area may be somewhat reluctant to refer patients to a support group, particularly if they've had experience with other groups that were depressing or received poor reviews. You may have to make up ground and be prepared to prove yourself over time to get physicians to support your efforts. In our case, we believe that we are an asset to our local physicians. We don't want to make their work more time intensive. We want to make their work easier by taking the time to hold a patients hand, explain self help, diet, sex etc.. all issues which the physician may not be aware of, or have the time to offer their patients to discuss. We offer a direct benefit and our participants return to their doctors office with new information and new, more effective ways of working with a physician. We NEVER try to create an adversarial relationship between the two. Our job is to nurture the patient-physician relationship.In addition, we notify our local physicians of meetings by providing them complementary copies of newsletters. We also visit each office personally once a year to talk with staff and/or the doctor. Inviting them out to lunch and/or offering a video for training purposes is also another way to build a positive relationship between yourself and your local medical community.
#10. Communicating with the Press
As a support group, you have the opportunity to tell your story within your small community newspapers, regional newspapers and, once in a blue moon, even receive a feature story. Most of the time, though, your goal with the media is JUST to place a short, brief announcement of your support group meetings, usually in their calendar of events.One note - Newspaper editors don't appreciate phone calls demanding coverage for your support group. However, if you carefully review the paper and look for it's health or womens issues section, you can usually find a writer or editor to approach. Call early in the day, not in the afternoon when the afternoon deadlines. Then ask them who you should send your meeting announcement to, and what should be included. Then do it, promptly, either by fax or email.
Lastly, when you work with the media, you have the chance to find an interested writer and possible story idea if you're clever and prepared. If someone shows an interest in telling the story of IC, try to focus on how this disease has changed your life. Consider creating a short, brief fact sheet to include with any press release. This is called a "backgrounder."
#11 Suicide Support
It is inevitable that patients who are in severe pain, scared and/or feel that there is no hope, may have thoughts of suicide. In a support group christmas party, we watched a video which, much to our complete surprise, featured Terri Jo Myers discussing how she almost committed suicide. We were all stunned. Yet, remarkably, everyone in the group was almost relieved that the topic had finally been broached. To my total surprise, everyone in the room admitted that they had thought of suicide, perhaps not seriously, but still enough to cause concern.As a support group leader, you have to be prepared for this moment.. for it will happen either in a meeting or in a phone call. We suggest that you visit your local suicide support center and/or hotline. Learn of their resources in your region so that you can immediately direct anyone to a professional. If they offer any seminars, take them. Learn as much as you can from those professionals on how you should handle a suicide situation.
In my five years as a support group leader, I have encountered a few IC patients who expressed an active intent to commit suicide. It is a very delicate situation. In one phone call, as the patient cried hysterically on the phone, I asked her to get her husband on the phone and then offered immediate suggestions for psychological care and, thankfully, her husband had already taken steps as well. Just one day later, she was FINALLY talking with a trusted therapist. In other cases, you are faced with the dilemma of contacting your local police department if the patient expresses intent and says that they have a method. Your local suicide support center and resources can offer you more guidance for these situations.
#12. Think big! Special Events
Doing events is vital because your medical community needs as much education as you can provide on IC and bladder diseases. Just six months after our support group began operating, we approached a local hospital and pitched an idea for IC as a topic for grand rounds in our local community hospital. They agreed with enthusiasm.We then asked three national prominent speakers to attend. They also agreed with enthusiasm and then gave us information on a pharmaceutical company that would underwrite their travelling expenses. It was much easier than we anticipated.
In four years, we had two major regional events for our disease. Our second involved many of the local related disease support groups in our region. We didn't want to do an event just for IC because we knew that other support groups had many of the same issues, such as pain management. We blended our purposes and acted as a team to create the first ever Summit on Chronic Pain here in Northern California. According to Dr. Forest Tennant, that conference led directly to our governor signing the first Pain Patients Bill of Rights here in our State.
I offer this to you with the hope that you will see that you can create opportunities to make a difference. Don't let anyone stop you from thinking big. IC is wonderful to focus on. But, there are so many related conditions. Wouldn't it be great if you started networking with your other local fibromyalgia, chronic fatigue, Sjogrens syndrome, vulvar pain, prostatitis, support groups. You'll have a much better chance of media exposure if you work with others, and each group leaders can be a resource for each other.
When you decide to do a larger event, please call Jill at the IC Network (707)538-9442! We would love to co-sponsor your event, provide resource materials and seed funding!
Avoiding Group Leader Burnout
Group leader burnout can happen to even the most enthusiastic leaders. You'll know the symptoms. You've started living IC and taking IC phone calls during most of the day and some of the evening. You might get knots in your stomach when the phone rings. You start getting too involved in the lives of your participants such that your own begins to suffer. This happens when you let your time and commitment get out of control. Remember the following principles:- Your real life (family, work) always takes precedent over your support group leader life (and cyber life.)
- Your health and well being comes first. You can't help others if you are in bad shape.
- Your time is the most precious gift you have to give. Use it wisely! Inform your group, ahead of time, that you will only take phone calls a few hours a day and tell them, specifically, what time you'd like to take those calls.
- Train someone in your group to back you up if you can't attend a group meeting (i.e. due to illness, vacation, etc.) There is nothing worse than feeling like you HAVE to attend, when you have a raging fever and the latest flu. Don't push yourself!
- Make sure that you're having fun. If your meetings and activities aren't fun or pleasurable then something is wrong! Find ways to liven it up.
- Develop your own support team. We're often uncomfortable talking about our own issues with our group members. Find a few trusted individuals to be your support team, including a few other support group leaders to share strategies, success stories and crisis plans with.
- Ask for help when you need it! Don't fall into the pattern of doing everything in your group. If your members won't step forward to help, even with a small one hour task like bringing cookies to your meeting, have a firm talk with them that the group depends upon EVERYONES participation. If they won't help out afterwards, then consider taking a six month hiatus. It is very hard for one person to do all of the work, all of the time. You need a break!
Conclusion!
It takes a special person to step beyond their own health issues to help another. You can do it! You will do it! You must do it! There are patients who need you. Good luck and if you would like to talk about your plans, or just get some advice, please don't hesitate to call me. I would be happy to help you in any way that I can.
Jill Osborne, ICN
& ICRE Founder
(707)538-9442
E-mail: jill@ic-network.com