Your CPAP Support Team

For people with Obstructive Sleep Apnea and their healthcare professionals, peer coaching article #10, updated 21 November 2011

It Takes a Village

This article describes an ideal team. Very few people have the ideal startup team in sleep apnea treatment. You can still be successful at CPAP if you have only some of the elements. Success depends on YOU.

Why is it necessary to have a support team?

1) Because it can be difficult to adjust to the cumbersome CPAP (CPAP, AutoPAP, BiPAP) treatment for OSA (obstructive sleep apnea). About half the people who start CPAP therapy fail, and failure increases their risk for heart attack, stroke, car accidents, and diminished quality of life.

2) Because selection of equipment, its set-up, and ongoing adjustments usually have some difficulties. There are many important details and variables. In addition, research is ongoing and equipment technology is rapidly changing.

3) Because for some people there are two missing links – good information sources and an informed person to help with frequent therapy questions. Some patients are largely on their own with OSA treatment. Basic and detailed therapy information and ongoing assistance at a local DME (Durable Medical Equipment or home care provider) are not as easy to find as you might expect, compared to the quality of care in a hospital or medical clinic. Technicians (respiratory therapists, clinicians, or sleep technicians) even at many large, national DMEs, and even if patient-centered and kind, may be hampered in assisting you by organization constraints (fear of litigation), misinformation, or dysfunctional organizational systems. For example, the technician is not allowed to share certain information with you such as general information about pressure settings and refers you to your doctor who prescribes the pressure settings but who may not be an experienced sleep specialist. If you spoke to the same technician in a more neutral setting such as an AWAKE support group meeting, maybe they could share more general information from their experience. Or the DME sells equipment from only a few manufacturers, so their people only suggest those products, even though you may need better equipment from a different manufacturer. Perhaps they can get you other equipment, but they don’t volunteer that information and it may take a long time to get if you do manage to order it. Your doctor, focusing on medicine, probably doesn’t have the time, nor anyone in his/her office, to assist with the many and frequent therapy issues better done by a neutral, unbiased, patient-centered respiratory therapist.

Ideal team members: a doctor experienced in sleep medicine, specialist doctors, sleep center/lab, local DME, online DME, online support group, community support group, others with OSA, family and friends acting as helpers or as an advocate, OSA web sites.

1. Let’s say your primary care physician or family doctor is very helpful and was instrumental in suggesting a sleep study which led to the diagnosis of OSA, but is not a specialist in subsequent CPAP therapy. You may want to find a doctor experienced in sleep therapy. This may be a sleep doctor who is board certified and experienced in sleep medicine, a pulmonologist (breathing specialist) or other specialist; or a primary care physician, family doctor, physician assistant, or nurse practitioner with sleep therapy experience. Treatment of sleep disorders is still relatively new in the medical community and sleep doctors may be overbooked. There is a body of knowledge about ever-evolving equipment and treatment techniques not known to every physician. It’s worth searching for a doctor with experience in sleep apnea. Ask your family doctor and/or local hospital sleep lab for names of sleep doctors. Prepare a few questions about their practice. Phone their offices for answers and talk to the nurse, front desk people, the doctor, your family doctor, or to other patients or sleep lab technicians in the hospital where the doctor practices.

• Does this practice accept your insurance?
• Is the doctor accepting new patients?
• How long does it take to get an appointment; how busy or accessible is the doctor?
• What is the doctor’s experience with sleep apnea?
• Does the doctor ever recommend alternatives to CPAP treatment (dental devices, pillar procedure, etc.)? (Depending on your condition, if the doctor immediately suggests surgery as a first step rather than CPAP which is a noninvasive and low risk treatment option, he/she may not be up-to-date on the long term results of certain surgical techniques – or maybe you would benefit from surgery.)
• What types of CPAP treatment does the doctor use? Does he/she categorically disapprove of APAP (auto CPAP)? (The answer may give you some indication of how up-to-date the doctor is on APAP research and newer machines. APAP may not be the best choice for you, but open-mindedness is helpful.)
• Does the doctor support a cooperative, collaborative relationship with the patient and advocate responsible patient self-management of their therapy? Does he/she support patient responsibility and empowerment in their therapy, or are they more “old school” with the doctor as manager of the therapy and the patient as passively obedient and compliant? Which style are you as a patient?

If after a few visits you find that your doctor’s style and your style of handling your therapy are incompatible, find a different sleep doctor, if you can.

2. After the diagnosis of OSA, if suggested by your primary care physician or the sleep study report, you may want to visit an ENT (Ear/Nose/Throat) doctor, pulmonologist, cardiologist, or other specialist to learn more about your health conditions.

3. DME or home care provider. You may be assigned to a Durable Medical Equipment provider by your insurance company, or given a choice of several DMEs, depending on your insurance plan. Following your doctor’s prescription, a respiratory therapist (RT) or technician may outfit you with a machine and mask, and provide training tips for use and cleaning. DMEs are a profit center store, warehouse distributor, and delivery service (except that they may not deliver CPAP equipment) with a measure of therapeutic support; a valuable service if done right.

• Is the DME company’s customer service knowledgeable, accurate and prompt in handling your prescription and equipment orders?
• Do they return your phone calls promptly?
• Do they give you phone numbers to contact your local office or always require you to go through regional customer service and then not follow up to help you?
• Are there procedural conflicts and poor communication between one part of the company and another (customer service, local office, billing, regional, legal for HIPPA release forms), so they can’t easily help you if you have problems? In other words, do you get the run-around?
• Are they genuinely courteous and helpful or do they take a hard line against you and your needs and act dismissive under the guise of their procedures?
• Do they offer accurate information and assistance or do they conceal information in order to push their products, or are they uninformed or misinformed?
• How long does it take to get equipment?
• Do they ship the right equipment? Is it easy to return incorrect equipment?
• Do you have a short drive to the local office and short waits for an appointment or service? Under what circumstances do they deliver equipment?
• Is the RT both knowledgeable and compassionate?
• Does the RT provide safety information about the CPAP machine and masks?
• Does the RT show competence and confidence in setting up (programming) your machine and set it up correctly?
• Does the RT show you how the machine is set up and how to work the controls and mask, at a time and pace when you can absorb the information?
• Does the RT show you a reasonable choice of masks, both types (nasal mask, nasal pillows, full face, hybrid) and brands (ResMed, Respironics, AEIOMed, Fisher and Paykel, others)? The DME will probably have a contract with only a few brands or manufacturers, but you may require a different brand. Can they order that brand for you? Will getting it take an unreasonable amount of time or money?
• Does the RT seem to know how to fit a mask? Is the mask trial and fitting done while you are lying down on your sides and back, with the CPAP machine turned on to check for leaks?
• If your machine has a smart card, is the DME able to provide you with software reports on a timely basis?
• With HIPPA regulations, does the organization make it easy for you to get your software reports and billing information?
• How well do they handle equipment replacements and repairs and billing?
• Does dealing with them relieve your stress as a new CPAP user or add stress?

If the service at your DME is unsatisfactory, you can ask for a different RT in the same office, or try another office of the same DME company. If your attempts at consistently getting adequate service fail, you can go up the chain of command to the branch manager and regional manager or headquarters. You can phone your insurance to see if other DME or home care respiratory equipment providers are available on your insurance plan, in-network or out-of-network, local or online, and try them. You can try an online DME and compare pricing and service. If you have an effective local DME, you are fortunate indeed.

4. Online DME. Some people give up on hassling with the ineffective and expensive local DME office and order equipment on the Internet at a much lower price with faster delivery and good customer service and advice. See if your insurance plan will cover purchases through them. You can use an online DME such as www.cpap.com paying out-of-pocket. Because they don’t need to deal with insurance and maintain expensive local offices, drivers, and a huge inefficient infrastructure, online prices are astonishingly low for the same high quality equipment offered at much higher prices by large national DMEs with local offices. With luck and ingenuity, you can combine various options for service to get your needs met for OSA equipment. For example, first you can research machines and masks online at www.cpap.com. Can you try on the specific masks that seem promising at a sleep center and buy it there? Can your local DME order the mask and let you try it? Or it may be easiest and most cost effective just to order the mask through the online DME.

5. The sleep center or hospital sleep lab may be a resource beyond your initial sleep study. Technicians at a hospital may be less profit motivated and more patient-focused, more informed, and not hampered by a dysfunctional organization.

• Does the center’s sleep technician offer mask trials (trying on various brands and types of masks under pressure)?
• Does it offer mask fittings (adjustments) of your current mask, no matter where you purchased it?
• Have you compared the sleep center’s sleep tech’s skills at mask trials and mask fitting with the skills of the respiratory therapist at your local DME?
• Does it offer these services to people who are not former patients? Are services free to former patients or at a cost?
• Does it sell equipment and how do the costs and services compare with your local DME or an online DME?
• Does it have a return policy within 30 days?
• Do other sleep centers in your region offer these services, and can you use them even if your sleep study was not done there?
• Does the sleep center offer expertise (or pamphlets) not readily available elsewhere? Does it sponsor support group meetings through American Sleep Apnea Association (ASAA) AWAKE groups or another organization?

6. Online support group. A very helpful community of xPAP (CPAP, APAP, BiPAP) users is found at www.cpaptalk.com. You can ask individual questions and quickly get a variety of supportive responses from people with experience. Sponsored by www.cpap.com, this forum gives back information to the CPAP community. If you regularly read this forum, you may quickly find that you know more about certain practical aspects of sleep therapy than your professional healthcare advisors. You may want to explore other online support groups as well. Remember, opinions and personal truths are offered, not necessarily facts or your truth, so be discerning.

7. Community support group. Look for American Sleep Apnea Association (ASAA) AWAKE group local meeting information at http://www.sleepapnea.org/awake/index.html. If you attend a meeting, you may find that you are able to help other xPAP users with your new-found knowledge from www.cpaptalk.com. If you want to start your own support group, explore http://www.awakeinamerica.org/Groups/LaunchGroup.shtml.

8. Others with OSA, family and friends, an advocate. Personal support, both given and received, can be invaluable. Do you need reassurance? Do you need help with using technology, the machine or its software? Do you need help adjusting your masks? Do you need help with running interference with an uncooperative DME or perplexing insurance coverage? It can be quite trying to be exhausted from sleep deprivation and need to repeatedly deal with DME hassles. A friend acting as an advocate can help.

Mike Moran in a contemplative frame of mind: Nov 21, 2005 Embracing the Hose  

Source: Based on personal experience with Obstructive Sleep Apnea.

Want more? See the peer coaching articles at http://smart-sleep-apnea.blogspot.com , http://www.cpap.com FAQ Learning Center, or search http://www.cpaptalk.com or post a message there.

Not written by healthcare professionals. The information and opinions offered are not intended or recommended as a substitute for professional medical advice.

© Mile High Sleeper, August 2006 - 2011. All rights reserved. You may make copies of this message and distribute in any media for free educational purposes, as long as you credit the author and include this copyright notice and the web address smart-sleep-apnea dot blogspot dot com