Starting and Maintaining a Successful Glaucoma Patient Support Group
This manual will guide you in the process of starting and maintaining a successful glaucoma patient support group. It is based upon the development and maintenance of a successful glaucoma patient support group in New York City.
A support group can be either a formal entity serving many functions or loosely organized to lend support to a group of people. Basically, a support group unites a number of people with similar problems, and is especially helpful for those with a chronic disease such as glaucoma. A support group provides an invaluable method for airing problems, learning more about the disease and sharing concerns. It can be virtual (web-based) or comprise of a group of people meeting weekly or monthly in a designated space. It is an ideal venue for providing mutual assistance in dealing with emotional and technical problems that may arise.
As an example, should visual impairment result, members of the support group can provide guidance during transition to a necessary altered lifestyle. The support group is especially important should glaucoma strike during a person’s most productive working years from thirty-five to sixty years of age. During this time a support group can provide a platform for mutual assistance in exploring adaptive technologies. A support group is not limited to persons over thirty-five. Parents of children with glaucoma find solace in sharing information on managing their children’s medical and surgical needs.
A SUPPORT GROUP CAN HELP TO:
Provide information enabling members to better understand their condition.
Share similar problems and coping solutions.
Educate by inviting speakers from different branches of the medical community.
Extend educational possibilities by inviting speakers from different branches of the health field.
Enrich each other’s understanding of various recommendations for glaucoma treatment.
Learn early about new applications based on the latest research.
Invite practitioners in complementary therapy such as herbal and vitamin supplementation, Eastern disciplines including yoga, acupuncture, and other specialties
Set up separate small counseling sessions headed by a psychologist.
Establish an advocacy committee to promote awareness in the business community and the public-at-large of the need to modify transportation, materials and practices. Some examples include: modifying lighting in restaurants, restrooms and grocery stores, adapting various forms of recreation, providing street announcements by transportation operators, equipping talking elevators, supplying yellow strips on the edges of stairs, establishing high contrast letter street signs, developing good contrast written materials and large print on documents including bills, hospital information forms, insurance forms, restaurant menus, entertainment programs and such and improving visibility on display menus on technological equipment. The list is endless. A support group chooses its target and rallies its forces to improve access.
Empower patients to experience some control over treatment, research and life style.
SUGGESTIONS ON STARTING A SUPPORT GROUP
A natural starting point is to approach your eye doctor or clinic administrator. You may find that although your doctor or clinic director is in favor of a group, he or she lacks the time to devote to its formation. If you visit a doctor in a teaching hospital you may find that fellows are a receptive audience given their interest in learning more about patients’ responses. They may be helpful in recruiting members, providing space and serving in a general advisory capacity.
If you have no success with the above strategies, try to obtain permission from your doctor or clinic director to approach fellow patients. The waiting rooms of eye clinics or eye doctors’ offices are ideal settings for glaucoma patient interaction. You may discover that these patients welcome the possibility of forming a support group and may well become the nucleus of your group.
If the medical community is unresponsive or too busy to accommodate a support group, try your local church, synagogue, YMCA or YWCA or YMHA, public library, local school, community center or any other public facility to assist you in both forming a group and providing space. While there may be a charge for space, it is generally minimal.
DEFINE YOUR GOALS
Do you want your meetings to focus solely on mutual support?
Do you want a doctor to lecture at each meeting?
Do you want a mix of health professionals?
Do you want to formalize your group with a charter, by-laws, etc., where you elect officers each year?
Do you want an informal structure led by a Steering Committee?
Do you want to publish a newsletter? If so, will the newsletter be a chatty account of members’ concerns or a more formalized structure summarizing your lecturer’s talks?
Do you want to set up a dues payment schedule?
Do you want to make fundraising for glaucoma research a part of your program?
Do you want part of your focus to be on patient advocacy?
These are just a few of the questions that will help you get started. As your group forms, you will probably find that your members will gravitate to one or more of the above, or perhaps come up with a completely different agenda. In the beginning keep the meetings flexible until the group’s direction emerges.
Essential Requirements for a Support Group:
A permanent meeting place.
A register of members
Mailings to keep members informed of meetings.
Funding, however minimal, to cover expenses.
Commitment of the coordinator to oversee all the necessary functions:
solicit speakers if that is one of the missions.
run the meetings.
publicity to: doctors, local newspapers, health organizations, senior citizen centers, etc.
Not absolutely essential, but a newsletter summarizing your meetings helps to hold the group together. This newsletter can be an attachment to email for those who have it, thus saving on postage.
Enlist your doctor’s cooperation to inform patients of the support group’s existence. Ask his/her help to ask other doctors to do the same.
Contact local pharmacies who may be helpful in recruiting both members and sponsors/speakers.
Tap the glaucoma services in local hospitals for potential members and doctors who can support your group.
If hospitals have newsletters for patients, ask to have an item about your support group inserted.
Send out news releases to local papers announcing the formation of the group.
Announce the formation of the group on the Internet, especially on local health newsgroups.
Inform Sherry Holthe, Secretary of the Association of International Glaucoma Patient Organizations (AIGPO)once the group has formed so that she can add it to theAIGPO website.
YOUR FIRST MEETING:
·Ask for volunteers to carry out various functions e.g. coordinator, secretary, treasurer, newsletter editor, production manager, newsletter distribution, speaker contact, and telephone and email support.
·Pass around a sheet of paper with suggested topics. Ask members for additional suggestions.
·Serve refreshments if possible (Be sure to include fresh fruit and vegetables for members who may be diabetic.
·If you do not have a speaker, don’t attempt to answer medical questions, but focus on ways to cope with glaucoma and visual impairments. Please be sure that you’ve left enough time for patients to ask questions of the speaker.
·Some patients tend to just want to keep talking about their experiences, especially if they have a particular problem. This situation usually causes the group to become restless. Allow enough time for an airing of the problem, then gently move onto another participant or introduce another topic.
·Announce the formation of the group on the Internet, especially on local health newsgroups.
TOPICS THAT MAY BE OF INTEREST TO A SUPPORT GROUP
Types of glaucoma
POAG (Primary open angle glaucoma)
Normal Tension glaucoma
Pigmentary Dispersion Syndrome and Pigmentary glaucoma
Ocular Hypertension--high tension but glaucoma damage yet
Glaucoma and macular degeneration
Glaucoma in children and juveniles
Glaucoma associated with diabetes mellitus
Rarer forms of secondary glaucomas.
Low Vision (visual aids)
Glaucoma suspect—high intraocular pressure but no signs of vision loss.
Optic nerve evaluation
Visual field test
RELATED HEALTH ISSUES
Services for legally blind
Living with a chronic condition—quality of life issues
Supplements including herbal treatments.
Eastern forms of relaxation (meditation, yoga, etc)
Since you will probably not have a budget to pay an honorarium to a speaker, you will need to find speakers who will address your group free of charge or pro bono. This is usually not difficult to do because most healthcare professionals consider it a public health service to speak to a group. If you are able to enlist your ophthalmologist in supporting the group, he or she will be able to recommend speakers. In many cases, those who have had glaucoma for a number of years will occasionally need to be evaluated by ophthalmologists specializing in the retina, cornea or other parts of the eye. Tap these specialists also as speakers.
Of course, a support group can exist without speakers, but don’t be disappointed if the group membership dwindles after a number of meetings. Participants of a group often find that when their emotional needs are met, they no longer have the need to share experiences. It is, therefore, important that recruitment be an ongoing activity.
You will probably arrange for a speaker over the phone, or personally if the speaker is your own physician. After setting a date, it is wise to confirm the event either through E-mail or snail mail even if it is just a short note, thanking the speaker for agreeing to come to the meeting. Be sure to include all pertinent information for the speaker such as Topic, Time, Place, Address, Room #, etc. Also ask the speaker if he or she plans to use. audiovisuals. If you are holding your meetings in a hospital, chances are that audio-visual equipment will be available. Otherwise, the speaker may need to provide the equipment. It is wise to contact the speaker a few days before the meeting date to minimize the risk of forgetting.
Following the presentation, you will want to thank the speaker either via E-mail or letter. This is an important step since speakers are interested in feedback from the Group and a heartfelt thank-you may encourage the speaker to return on another occasion. (see below for sample letters)
It may be possible for a local health organization or a hospital to sponsor your group. This can be an advantage since such an organization may elect to provide space for your meetings. Depending upon the resources of the organization, you may also be able to use mailroom facilities.
ADVERTISING THE GROUP:
Telephone trees are serviceable in the beginning, but most people like to have a flyer in hand for referral. Also, producing flyers announcing your next meeting is a good way to advertise your group, since this flyer can be posted in doctors’ offices, hospital waiting rooms and senior citizen centers. Flyers are also great ways to recruit new members. Ask members of the group to post flyers in libraries, drug stores and in their personal doctors’ offices.
FINANCING YOUR PROJECT:
At the very least you will need some money to send out notices especially as your membership list begins to grow. You may want to charge minimum yearly dues just to cover expenses, or seek a small grant from one of your local institutions such as a bank. If you do have a sponsor, you may be able to arrange to have the flyers printed and mailed under its auspices. Once your group is established, note that in the United States, it is possible to send out flyers free as long as you stamp “free matter for the visually handicapped” in the right hand corner where the stamp would ordinarily go.
Please bear in mind that a support group should be fashioned by the perceptions of its members. It can be entirely patient focused as is The New York Glaucoma Education and Support Group that is run by a Steering Committee. This Group primarily invites speakers to each of its meetings, setting aside time for patient interactive support. In addition, it publishes a newsletter. Three-quarters of its members are homebound, but still are actively involved because of access to the information provided in the newsletter. It is a completely volunteer organization. Technical support is provided by the Glaucoma Foundation.
A support group can grow into a formal structure similar to Glaucoma Australia, Inc. This group was formed to increase community awareness, to provide information and support for glaucoma patients and their families and to develop financial resources to fund research. A Steering Committee was formed by a group of ophthalmologists and patients. The group grew into a national organization that distributes at no charge, pamphlets and information sheets on glaucoma. Glaucoma
Australia also produces a newsletter, Glaucoma News that reaches over 6,000 people. It has spawned support group meetings in
Sydney , Armidale and
Newcastle. It also provides a handbook that has been translated into several languages. The national organization conducts an annual fund-raising appeal that has enabled it to donate research funds to various research projects. Because of its large volunteer base, it needs only two full-time and one part-time staff members.
STEP-BY-STEP APPROACH TO ESTABLISHING A GLAUCOMA SUPPORT GROUP
Step 1. Find a supporting physician or hospital / clinic.
Step 2. Determine a meeting location, date and time.
Step 3. (optional) Enlist the help of a corporation in providing refreshments at your meetings.
Step 4. Hold your first meeting and discuss members’ goals and priorities.
Step 5. Invite speakers to your meetings on topics of interest to your members.
(INSERT NAME, ADDRESS, PHONE NUMBER AND EMAIL OF YOUR GROUP)
Welcome! You are about to join a large group of patients who are interested in self-empowerment to help cope with glaucoma. Membership in the Group entitles you to monthly free lectures by physicians and other health professionals. Meetings are held on (insert schedule of meetings) at the (insert location, room, time, etc.). Along with monthly flyers announcing the next meeting, you will receive a quarterly newsletter that recaps the lecture material. To keep this organization viable, we request, if possible, a $25 dollar donation. Should you choose to increase your donation, this additional funding will be directed to a glaucoma foundation involved in funding research (or to the organization with which you are affiliated.)
Send this half to (Insert Name and Address of your group):
Thank you for agreeing to participate in our lecture series.
Your lecture is scheduled for (DATE) at (TIME) in the (PLACE, ADDRESS, ROOM #). If you plan to use a power-point presentation or other audio-visual equipment, please advise me immediately so that we can arrange to have the equipment available.
As we discussed over the phone, our group is particularly interested in learning more about (insert topic). Some of our members are in the process of grappling with (topic) and its implications. We are, therefore, most interested in a lecture updating us on the current thinking about (topic). This is a sensitive topic for glaucoma patients, so there will probably be many questions.
We will be sending out a flyer to members and for this, we will need your CV, both in order to introduce you and for information to be placed on the flyer. Below is a suggested title. You are, of course, free to change it to one you consider more suitable.
You can fax this information to me at (FAX number) or mail it to (MAILING ADDRESS), or E-mail: (E-MAIL ADDRESS)
(Optional) We publish a summary of your lecture in our newsletter that is sent to our members as well as to a group of physicians. Thank you again and we are looking forward to your being with us.
THANK YOU LETTER
On behalf of (NAME OF GROUP), we want to thank you for your amazing lecture on (DATE). We are deeply grateful that you took the time out of your busy schedule to meet with us. Any information we can bring to the group that will enlighten them about health and its influence on the eyes is greatly appreciated and we feel that your lecture did just that. Members attending voiced their deepest appreciation for the information you imparted to us.
(optional) Enclosed is the article about your presentation. Please feel free to make any changes or additions that is more representative of your point of view. Your lecture contained a wealth of information and we could not include all of it.
Is it possible for you to email or mail your corrected copy of the attached material by (DATE)?
Again thank you for presenting this very important workshop.
With best wishes,
INTRODUCTORY FLYER OR LETTER FOR DOCTOR’S OFFICES, HOSPITALS, ETC.
THE GLAUCOMA SUPPORT AND EDUCATION GROUP
In partnership with
THE GLAUCOMA FOUNDATION
FREE Saturday Lecture Series June 19, 2004 10:30 AMNational Association of Visually Handicapped
22 West 21 St., 6th Floor, New York, NY
VISIT THE CANDY SHOP
OF VISUAL AIDS
Visiting NAVH is an extraordinary experience. Here is where you can examine at your leisure special lamps, computer technology and, of course, every manner of visual aid—from simple magnifiers to highly powered instruments.