How to Start a Support Group

If you build it, they will come!

By Tracy R. Nasca

Every day, it seems, someone emails or calls the Talk About Sleep offices asking us to help them find a patient support group in their area. Although there are a significant number of support groups across the United States , obviously there are not enough!

Sleep awareness and education is key to increasing diagnosis and successful therapeutic compliance. How can you help in these vitally important areas? Start a sleep disorder support group through your hospital or clinic sleep lab! It is easier to do than you might think.

Why should you volunteer your time in such a way? I can only share my experience in sleep advocacy. Whether you are a patient, or a sleep medical professional, by becoming involved in sleep advocacy, you will learn, share what you learn, and make a direct and positive impact on others. People have called me an angel and told me there will be a special place in heaven for me. I am neither an angel, nor am I in a hurry to get to heaven. But, knowing I have turned my energy into helping my fellow man is a great reward. Life is short, make a positive difference every day. Near death when diagnosed and now enjoying a full life thanks to successful treatment, I realize the importance of making every day count. You don't have to dedicate your life to sleep advocacy, but I hope you will consider dedicating a few days each year to help others!

Why are support groups important? Most people who are diagnosed with a sleep disorder feel alone. They rarely know other people with a sleep disorder. Many suffer with depression as a result of their untreated sleep disorder and unfortunately, many feel no one understands them. Spousal or family support is often missing, due to the lack of knowledge about sleep disorders. Support groups allow patients to meet others who share the same sleep disorders where they receive encouragement and hope. Knowledge is power; support group meetings help the patient and family members learn more about their disorder, which will encourage patients to work harder at solving compliance issues as well as building self-esteem. Fellowship, information, education and support are the bottom line in helping yourself and others achieve physician prescribed therapeutic compliance. Sleep apnea, narcoleptics and restless legs syndrome patients are especially in need of support groups.

If there is no support group in your area, start one! Here are some suggestions as to how:

Who: You need attendees! Enlist the help of your sleep lab and area sleep physicians to mail support group meeting notices to their patients. If you are a medical professional, get the word out by letting all patients who come through your sleep lab know of your support group meetings and encourage them to attend. Ask your local home healthcare suppliers to inform their patients as well.

When: As coordinator of a patient support group, you would be responsible for setting an agenda for each meeting monthly, quarterly as often as your group feels necessary. The talkaboutsleep.com web site provides a message board just for the purpose of announcing support group meetings!

Where: For the asking, many hospitals or sleep clinics will generously provide a free meeting place. Some groups meet in local Libraries and some choose a restaurant that offers meeting room space.

Featured Speaker: Guest speakers are easy to find. Your local Sleep physicians, respiratory and sleep lab technicians, and home healthcare providers are usually quite willing to speak. To meet the needs of your particular group, poll your membership to see where their interest lies in speaker topics.

For the sleep apnea patient, a big draw to support meetings is an Equipment Fair, held once or twice a year. Durable medical equipment suppliers and the equipment manufacturers will gladly participate in an exhibit to show their products to the patient. This allows the patient the opportunity to see the variety of products on the market and keep up with the latest equipment. Increased contact with these vendors will keep you well informed too!

Contact your local media, newspaper, radio and TV to announce your support group meetings as a free public service announcement. Be a guest speaker on local radio, TV or newspaper interviewee to promote sleep awareness.

To learn more about starting a support group with the help of the national patient support organizations, contact:

Narcolepsy Network
Email: narnet@narcolepsynetwork.org
Toll-Free: 888 292-6522

RLS Foundation
1610 14th St NW Suite 300
Rochester, MN 55901
Email: rlsfoundation@rls.org
Phone: 507-287-6465

American Sleep Apnea Association
1424 K Street NW, Suite 302 , Washington , DC 20005
http://www.sleepapnea.org/awake/index.html
Phone: 202-293-3650
Email: awake@sleepapnea.org .

If you prefer online support, Talk About Sleep provides 7 scheduled and hosted chats each week. Here is a link to our chat calendar:
http://www.talkaboutsleep.com/chat/calendar/public/calendar/handler.cfm

If you prefer message boards, ours are very active and helpful and we encourage you to participate.
http://www.talkaboutsleep.com/message-boards/