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HIGHLIGHTS OF CHAPTER LEADER CHAT ROOM 3.14.05 Note that the transcript from this Chat Room has been edited for topic consolidation and clarity. The spirit of the discussion has been maintained. Most personal references have been removed.
Topic Discussed in the Session Include:
CHAPTER LEADERSHIP ISSUES
CHAPTER PROMOTION
CHAPTER MEETING PROGRAMS
ATTRACTING PEOPLE TO CHAPTER
MEETINGS
CHAPTER RECOGNITION AND FIELD
SERVICE PROGRAM
CHAPTER WEB SITES
UOA MEMBERSHIP BENEFITS
THE NEW DIRECT MEMBER BILLING
PROGRAM
UOA NATIONAL CONFERENCE
CHAT ROOM FUTURE
"Welcome, Chapter Leaders, to UOA first Chat Room. I'm Nancy Italia, UOA's Executive Director. We are happy to meet you online tonight and hope you find this session useful. I am pleased to introduce to you one of UOA's most dedicated volunteers, Ginnie Kasten, Chair, Chapter/Field Services. Ginnie will be telling you how the Field Service Committee assists chapters and what UOA resources for chapters are available on our Web site, as well as responding to your questions. Enjoy chatting!" The field service program first started in 1966. It has evolved over the years to what we have now. It is chaired by Ginnie Kasten and is comprised of 11 regions which are currently manned by 10
Regional Coordinators (Area 1 – New England area is vacant). This revised field service program went into effect 10/1/04. Each Regional Coordinator has from 3 to 6 states in their area that they are responsible for contacting on a quarterly basis, either by letter, e mail or phone. It is our job to start new chapters, offer assistance to chapters in trouble, provide resource information and disband chapters who are unable to continue. Personal visits are also a possibility. Our volunteers get their expenses reimbursed (though many donate their expenses) and if the budget allows, we will make every attempt to answer a request for a visit. Our field service personnel are very experienced UOA members, many are past presidents of UOA, former board members and some are current chapter leaders.
CHAPTER LEADERSHIP ISSUES Biggest problem facing chapters:
Q - What is the biggest problem facing chapters today.
A - I would say membership and leadership in that order. Our members are declining due to age and we are unable to obtain new members as patients are receiving information and not joining our local chapters.
A - Leadership is a particular problem for us. We have been unable to fill secretary's position.
A - We suggest having a board run a chapter, not necessarily specific officers if you can't get one slot filled. My chapter used a team approach to the president once that was very helpful. Combine the job with another office.
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A - There is a nucleus of people who have been and continue to run the chapters and any new members are unwilling to chip in. They come to meetings to obtain the support and information we provide, and are not prepared to give back. There doesn't seem to be a way out of this dilemma. There is so much information on the web, they find that they do not need t to meetings and get involved. The entire attitude is not one of caring and compassion.
A - We have the support of the ET/WOCN and they sit on the regional board.
A - The support of the ET/WOCN is really what keeps a lot of chapters running these days.
CHAPTER PROMOTION
Q - How are chapters letting the public know about their organization?
A - We are in the local paper one day a week. Plus I have arranged for our meetings to be published in three local senior publications. Still people say they did not know about us. Any other recommendations?
A - The local cable stations often permit nonprofits to advertise their meetings (for free). Sometimes it takes a human interest story with a picture to make people sit up and take notice. Short of standing on a corner with a sandwich board that says "Hear ye, hear ye" come to our meeting, sometimes people don't want to admit that they are interested
A - Chapter promotion information is also found on the UOA Web Site, under Chapter Resources.
A - The upcoming Spring OQ has an article about a chapter's "Ostomy Awareness Campaign" Lots of good ideas for increasing public awareness.
A - We have the local radio stations airing our promotions addressing the day and time each month for our meetings. We have the newspaper publish our meeting times and dates in the local area and surrounding towns. We have been involved with the local hospital health fair handing out all kinds of information about the Colorectal Cancer and other ostomy information. I have also briefed the physicians at the Ft. Sill Hospital, the Viet Nam Veterans of America, and any body else I can talk to about our ostomy association. Last year our president and myself with our spouses talked to the local newspaper about how we can help people and get the word out to the public that "ostomy" is no longer a dirty word.
A - Wow! There is another person I want to clone. Would you all take note of all of the places Mel has contacted. Most importantly, we all must let the world know that ostomy is not a dirty word. Has all this publicity paid off? Are you seeing results in members or attendance at meetings?
A - I found my local chapter by way of going to the j-pouch website, learning about Shaz's Ostomy site out of Australia, talking to someone from the Evansville, Indiana chapter in Shaz's chat room, going to the conference in Philly, and meeting my local chapter leaders because they were walking by right when I was telling someone else I had no idea about any chapters in my area
A - This is unfortunate and I have heard other stories like it. Most people have experienced the opposite and didn't know there was a national! If you live in an area with a very weak chapter with
3 low visibility, no advertising, no visiting program and your nurse won't tell you, how else would you find out?
A - It is Mel who wrote the article for the upcoming OQ that was mentioned earlier. The article is filled with such efforts.
A - I hope I can meet Mel at the conference in Anaheim!!
A - We publicize in 8-12 publications monthly including the Washington Post. I think it has helped with meeting attendance.
A - Wow! At no charge I presume. That is really great and if you are seeing a difference in attendance then it's worth all the advertising
A - Yes at no charge-but it is really important to find out the publications requirements
A - Most chapters use Nancy's Insider newsletter - I see it reprinted in their newsletters all the time. We are giving out more and more info to chapters
A - Due to the format of my newsletter, I am unable to reprint the Insider and Web Site News, so I copy them and distribute them at all our meetings.
A - I copy Nancy's Insider and give it out at our meetings as an incentive to go to meetings to find out what's going on faster than waiting to find out in the OQ.
A - Yes, her Insider is very newsy and shows people in a nutshell what UOA can do for them Creating a brochure for a local chapter:
Q - Do a lot of you produce your own flyers with your chapter information?
A - We have a local brochure which is given to patients in a packet when they leave the hospital. We also have a bookmark with the info about our chapter that is given to the patients. We need to get the brochure out to more doctors’ offices. The patients get so much info when they leave that they don't remember but about 50% of it. Hopefully they look at the info when they get home.
A - When I started with this support group we were down to 6 members since the president of the group had passed away. Now that I am president I am dedicated to have us become a full support group. My membership is now 15 to 20 for every meeting. About the brochure, our old one was out dated and my ET nurse suggested we come up with a new one. I wanted the brochure to be more then just about the UOA support, but to also include information on product and availability of help for the many questions that go unanswered after surgery. My medical supply shops and ET nurses are excited about this. The UOA symbols will appear on the brochure and will show statistics to show the patients that they are not alone.
A - Be careful if you are putting medical information in the brochure. Make sure a nurse or doctor check the content. These brochures are usually designed to give local chapter information and to discuss UOA and the benefits of membership in the organization. No medical information will be given in the brochure, only where to find products, info on support group time and place, the American Cancer Society location, and little messages to let them know that they are not alone.
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A – I am looking forward to the conference in August. I was at the last one, and had a great time. My group is also excited about our brochure since I get calls all the time from people that want to meet other ostomy patients like themselves. I do need help with guest speakers since I sometimes run out of ideas.
A - I will bring my brochures to the conference. I will be at my booth. Lady Bug Industries, Inc. with my Nan-Wear product, designer pouch covers.
A - My chapter project this year is to make a new brochure with all kinds of information on where to find supplies, support group times and meeting places, and general cheering up messages for the new ostomate. The brochure is being paid for by our local medical supply shops and indorsed by our American Cancer Society. I am doing all of the footwork and printing bids at no cost to my support group. I would like the UOA to endorse this project with up at no cost to the UOA.
A - They have a sample brochure in the website info under chapters. It is wonderful that you have gotten local supplier to assist as well as the ACS. How do you want UOA to endorse the project? Many chapters have their own flyers (brochures) but they are only used at the local level
A - We are putting together a new member packet and are putting in the following: Application for membership, local club brochure, benefits of membership, list of officers and members, brochure order form, travel tips and cards, brochures from the WOCN organization and old copies of the OQ magazine. Have any other suggestions?
A - Holy cow! That is wonderful! Can I clone you? You might put in info on local suppliers and they might even agree to foot the bill for some of the printing. This is a fantastic way to get those new people and the discharge planner at the hospital should pass these out to the post op patients.
A - Thanks for the info about local suppliers, that is a great thought. I also have put together a list of 800 #s for all manufacturers that members can call for samples. It has been a big hit with our members.
CHAPTER MEETING PROGRAMS
Q - I would like info about good programs for our meetings. We do have problem solving meetings, but I would like a mix to keep the members interested.
A - If you go to the UOA website under chapter services, there is information on chapter topics, how to promote your chapter, and lots of ideas. I revisited the site today and forgot how much info there is on the site! Plus I have people call me or their regional personnel for additional info. The info on the regional coordinators is on the website as well.
A – We invite Doctors; and have a Fashion Show I put that together for our last meeting before summer break.
A - We always have "Fellowship" for 1/2 hour before each meeting.
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Q - Do you have a good turnout then? Are people just coming for the fellowship and then leaving?
Ostomates are very social people - if you have refreshments, that almost always boosts meeting attendance.
A - They come for the "fellowship" and stay for the meeting.
A - My exec board has a planning meeting in July to set up the programs and then work together to get the actual programs in line.
A - We are having our annual health fair on April 3rd. It consists of several round tables with different subjects, such as Colostomy, Ileostomy, Urostomy, Skin Care, Nutrition, etc. and we have a health care professional and an E.T. Nurse at each table and the members, visitors travel around from table to table and have their questions addressed. We also have five exhibitors, Coloplast, Hollister, Convatec, Better Living Now, Convatec and Byram Healthcare. It has become the main event of our meeting season and is always a great success. We have a great rapport with the Visiting Nurses Service of New York and have had a long-standing relationship with many nurses from the area hospitals.
A - I would suggest for meeting topics-think out of the box and remember there are other aspects of our members’ lives
A - Great point. Try to reach some older members (medicare or elder law), parents, young couples. Try to appeal to all ages and pre op conditions too
A - We had an estate and elder care lawyer as a program and it went over very well.
A - Panel of ostomates always is a big draw at our local meeting. They are asked a series of questions by a moderator.
A - This is a great way to get more members involved. We have invited Crohn’s or colitis suffers to come (from CCFA) and our chapter participates in a panel of ostomates at a local nursing school so they can see what we really look like!!!
A - My experience is have a definitive project - some will just take on other things.
A - Yes, you might just assign a 3 month job to somebody. Maybe a person can be in charge of signing everyone in, or keeping track of the wheel chairs, or baking cookies every month, or making phone calls to a small list of people
A - You should market this!!! This is the biggest problem I hear is that patients leave the hospital and never find out about a local chapter, even when there is an ET on staff
A - Some of the programs that we have done in Philadelphia were a store-sponsored fashion show, a massage therapist, Yoga, and an exercise class.
A - We've had meetings with everything from a presentation by a family with a young ostomate that we sponsored to the conference, to talks on home care and wills
A - Don't forget the "buzz sessions" - before or at the end of the meeting.
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A - The idea of nursing students coming to a meeting is a unique idea and will help them have more knowledge of an ostomate’s life after surgery.
A - Our hospital would make student nurses come if one of the staff doctors was making a presentation. Whenever we visit this nursing school, we try to encourage them to come to meetings, join the group, etc. They need to be educated about our care, not just how to treat ostomates in the hospital but any patient (since we've all been there). Getting doctors and ETs involved:
Q - We are having a problem getting any doctors to address our group? Is any one else having a similar problem?
Q - My question, too, is how do we enlist the doctors to see we are a modern organization, and get them to send people to the chapters?
A - What kind of doctors are you contacting? Usually a gastroenterologist, urologist, colorectal surgeon, oncologist are invited to our meetings. One of your members may be able to invite their own personal doctor.
A - We have a program this month with a colorectal surgeon and ACS.
A - We have had several Doctors attend our meetings because we have 3 ET nurses who are members & have invited them.
A - Yes. We can not get any doctor nor ET nurse to address us or even help us out for health fairs or meetings.
A - What do they say to you when you ask them? I don't understand why an ET wouldn't even offer to help you. Give me her name . . . .
A - We as a region have been getting 20 calls a month mostly for information and visits. This is for the tri-state area of southern New Jersey, Eastern PA and Delaware
A - That is fantastic. Their program in the east is working very well for them. We are trying it here in Illinois with Northern IL and Southern WI chapters. There is strength in numbers and smaller chapters can band together and help each other out in their region
ATTRACTING PEOPLE TO CHAPTER MEETINGS
Q – How do we get people to come to our meetings? We get a little over 10% of our membership at meetings on an average.
A - I would say if you get 20% you are like the general chapters out there. It used to be 30% but 20% is more realistic. If you are only getting 10% ask yourself why don't people come?. You may have 80 members and only 15 come to meetings. But if they are paying their dues, getting the newsletter, maybe that is all they want.
A - We have 200 + members and get 20 to 25 and sometimes 30.
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A - Do your members have a long distance to drive? That does seem a little low for a meeting. Have you ever polled your members to see what would make them come???
A - This seems to be the new atmosphere we are running into. You can get great info and services off of the web. Nothing beats seeing a rehabilitated ostomate up front and personal. Can you reach out and touch somebody on an e mail?
A - We use to have all or meetings the first Monday of the month. About 4 years ago we started alternating between night and afternoon. We increased our meeting attendance from about 15 to 35 on the average. This after noon we had 40 at our day meeting. Total membership is 174
A - I have seen chapters go to Sunday afternoons or even Saturday morning meetings. A lot of chapters do this and I find the night time meetings seem to be in the minority any more.
A - A lot has to do with their age, and distance plus a lot go to our Satellite group meetings because it's closer to them. I'm wondering if Chapters with Satellite groups are experiencing the same low attendance at their lets say base chapter meeting.
A – Don’t forget to count the number at the Satellite meeting. They are included in the total number of Chapter members. So, your percentage may be higher than you think.
A - You bring up a good point. The satellites were not always very strong groups, hence the reason they were satellites. That is interesting that the satellites could be becoming stronger than their base chapter! There's nothing wrong with that - the positions have been reversed
Q - As I am reading all the comments, I can see our chapter is having similar problems with getting members involved in the group and interesting them into becoming more than just a member. Is there something we can do that really gets them interested in helping? We see a lot of people who desperately need help with their ostomy and help them and that's it.
A - Find a talent of theirs you can tap into. Most people want to help because they were helped first by UOA or someone in your chapter. Ask them to do something! Anything, it can be simple, like sending to cards to people in the hospital or baking cookies for a meetingli> Greeting people at meetings: A - And nothing beats welcoming people at meetings.
A - You said it. Greet them with a smile, hopefully have name badges so everybody knows who they are and make them feel so welcome they will want to volunteer for secretary!! Tape the meeting to give to members who can’t attend:
A - We also taped a presentation by one of our local surgeon's, and turned it into a DVD people can purchase.
A - For those groups with a techie (this would be a great job for those younger members!) this DVD presentation would be a great idea. People don’t have to miss a meeting, they can be sent a DVD if they can't attend.
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Attracting young people to meetings:
Q - We can't seem to attract younger people to our group. Our members are comprised of older people and if a young person comes to the meeting once, they don't come back. How can we attract younger people?
A - You might try to invite a younger member to speak at a meeting. Or host a panel of young people to talk. Or have a social hour before the meeting where the "youngsters" can come and hang out.
A - We have members that are elderly and have new members who are younger who have not come back to our meetings. Our problem is the elderly can not see well after dark to drive. This creates a problem to get younger people to come our meetings because it is too early for them. If we change our hours later in the evening we may not get our current older people to come.
CHAPTER RECOGNITION AND FIELD SERVICE PROGRAM From Field Service Chair Ginnie Kasten: “Don't forget we have a chapter recognition award and I need some applications from chapters with awesome programs! Look in your chapter mailing. Be sure to find out who your Regional Coordinator is—they're all listed on the website, just click on the Field Services button. Give them a call when you have questions or concerns. We can be reached after UOA office hours and weekends too. All chapter leaders should know their field service person.”
CHAPTER WEBSITES
Q - We have a problem with our webmaster. He can not continue and our site is one year out of date. How can we obtain a webmaster to keep us up to date?
A - I would suggest you contact Ian, the UOA editor for some assistance or Bob Baumel who is our webmaster. Or possibly hook up with a webmaster in a nearby state. I would love to see every state with their own web page that all the chapters are linked to. We're trying it in Illinois. Regional website on east coast: Comment from the Delaware Valley area chapters: We are going to have a regional web site set up by July. We have 3 active chapters with web sites and we have 3 without. They will all be covered under the regional web.
UOA MEMBERSHIP BENEFITS
Q - What is the benefit of membership in UOA?
A - The following are benefits of membership:
1. Information, publications, website, care guides, 1-800#, national conference, youth rally, president’s meetings, regional meetings
2. Support – visiting program at chapter level, newsletters, meetings, national networks, advocacy activities, field service program
9 3. Partnerships – coalitions with allied agencies (ACS, CCFA, WOCN), global network
(IOA, FOW, UOA Canada), alliance with manufacturers, national preventative initiatives
(DDNC, Colorectal Cancer roundtable, National Health Council)
THE NEW DIRECT MEMBER BILLING PROGRAM
Q - How is the new dues system working?
A - The central office is pleased with the new dues system during the first quarter it has been in place. They are receiving additional donations.
A - Collecting dues at local level worked well. Using follow up phone calls for late dues was helpful. About a 7 % just needed a reminder or the dog ate it. Out of 35 renewals only one has not responded. How ever the 8 that lapsed from last quarter, only 2 responded. However, prospective new members who join via UOA web site are confused by the billing as how they become a chapter member. The billing just tells them to pay $25 (17.50 + chapter charge of 7.50) total for them to pay national $25.
A - Terrific! You have figured out DMB and it is working for you. Most chapters have been putting in the new membership app in their newsletters. These forms are available at the UOA office.
Q - Can we download the membership application in a Word doc?
A – Yes, we have provided the Word version of the chapter membership form to anyone who wants it. Some new members are unsure of the price difference between a chapter member and an association membership which is $25. Joining UOA online:
Q - What is confusing about the billing, is when a member joins thru the Internet, The billing does not make it clear what they are paying for and it does not make it clear how to join thru the chapter.
A - Once they join UOA, they should be able to find out the chapter in their area by checking on the website. They cannot join a chapter through the Internet however because not all chapters are online. Notifying local chapters when a national member joins UOA:
Q - Are chapters not notified when someone joins national who is in their area?
Q - Since we have to notify UOA when we get a new member, wouldn't it be a good idea for UOA to let us know when an association member in our area joins UOA so we can ask them to attend meetings.
A - No. If a member goes online and joins the national UOA, the office does not send a notice to the nearest chapter letting know this person joined. If they are on the website, there are lots of chapter links, with maps and contact people. If the people want a more local flavor, they usually inquire and the office will send them info on chapters
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A - Maybe the national could send the local chapter info based on the person's location.
A - I think they would prefer to let them go to the website and find the chapters themselves. The office is in California and don't know the geography in other states (like me - I am geographically challenged and would prefer people look up the info on the website)
A - Also, due to privacy restrictions, UOA can't give the names of new members to the chapters, they can only point the new member in that direction
A - We have had people join online with the UOA and tell us they had no idea there was a local support group. I have not checked the UOA website for the chapter links, so I will do that.
A - I can't believe a person would go the UOA website and come away with the notion that there are no local chapters. But I will work on this with the central office and see if there is any way we can "beef up" the chapter notion
A - Another problem could be that a new ostomate does not want his or her community to know he has an ostomy; joining at the national gets him information without having to "come out". I don't feel this is the right attitude to become rehabilitation, but we can't force patients to join our chapters - but we can make it so inviting that they couldn't imagine not belonging to a local chapter!!!!
A - Before the computer age, National would send a letter to local chapter that new person and phone # was interested in info on local chapter.
A - Yes, they did. But there never seemed to be any follow up by the chapter so they discontinued it.
A - At one time UOA had about 14 staff. Now we have 8 and less than 25% of chapters are online anyway.
A - Re calls to the UOA office, we log them and in February we referred over 100 callers to specific chapters. That's about average. Chapter referrals from UOA central office:
A - As our Chapter Contact I get calls all the time from people that were referred to us by National Org. I handle them when I get home from work.
A - Good to know. They are being referred to the locals and that is wonderful.
A - Of the calls that the office refer to chapters, maybe 20-25% of the people call back and say the phone was disconnected or no one answered or they left a message and no one responded, I am sorry to say. I know that does not happen in all of your chapters or you wouldn't be here tonight, but it is quite common.
A - We get many referrals from UOA and we make sure that they are all answered, most of them by me personally. We appreciate the referrals, so keep them coming.
A – That is good to hear. Some of you really follow up on them and that is so important.
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UOA NATIONAL CONFERENCE
Q – Will there be anything special at the conference for chapter leaders?
A - Area (Chapter Leadership) meetings are scheduled on Thursday, August 4th from 8:00 a.m. to 9:30 a.m., before the annual meeting Because there are 11 regions now, there will be several regions to a room.
A - These were very well received last year and the chapters wanted to get together again. They provide a great opportunity for leaders to discuss their similar situations
A - I know we also have formal leadership institute sessions scheduled all Saturday morning; do not know all the topics yet. There will be regional gatherings too. We need to ask Linda Aukett if there is time and space available
A - The regional meetings would be a good place to discuss chapter issues.
CHAT ROOM FUTURE
Q - Are you going to have another chat room?
A – We’ll have at least one a month, but maybe more depending on demand. Please let us know if this was of use to you so we can make sure the topics are helpful to you.
A - Re future chats, some will be very specific for member-related issues, like tonight, and some will be more general, open to all, such as a Q&A with an ET, or Doc. Chats are currently scheduled for the 2nd Mon. of each month with various topics. If there is interest we will do more often.
A - Next chat will be for Networks, then Youth Rally, then Conference, and eventually with a nurse, doctor, manufacturer, etc.
Q - Will notice be mailed out about future chat's as to the dates and time?
A - We will post schedule on Web site and various Discussion Boards, as well as e-mails to a variety of lists. Will also post in the OQ. Comments on tonight’s chat room:
A - This is kind of like having a mini leadership session or a president's meeting. Speaking of which, there is one in Dayton, OH on 4/23 and one at Hollister on 4/30 in Libertyville, IL for northern Illinois and southeastern Wisconsin chapters.
A - I feel it has been helpful to me. Will it still be for the leaders only? I think to open it to the members, it would be too crowded.
A - I found it very interesting and a great way to find out what the chapter leaders are needing and hopefully we can be of help. Look forward to the next one.
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A - I have enjoyed chatting with you - hope to meet you all at the conference.
A - Thanks to everyone for the helpful suggestions tonight. Hope to chat again next month. Everyone, Keep up the great work!
Ginnie, Good job!!! Got some helpful info and raised some interesting questions. Will look forward to the next one. Thanks.
A - Thank you all for your comments, great questions, great solutions and for all you do for
UOA!!!
A - Night all. This went well and is off to a good start!
A - The field service chair is leaving the building. I have more UOA business to attend to!! A pleasure talking to you all and thanks for participating.

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