I have Kaiser and have never seen a sleep MD

[Lindsley]

Is anyone else in this situation? My primary MD requested a sleep study for me, the results of my sleep study were "reviewed" by a sleep doctor and then settings were recommended and my primary MD actually wrote the Rx for the machine, which was mailed to me. I have never met with a doctor (just a RT) nor met with anyone from the DME provider, Apria. I called them once and they referred me back to Kaiser. I communicate with my RT by email; he didn't even seem to know what a Hybrid mask was, had no suggestions about cold air other than to turn up the humidifier. I get jealous when I see reports of some of you feeling like you have a "team" to work with!

Any ideas from other Kaiser members to correct this? I've only been on CPAP since March 3rd and apparently don't get to meet with my RT again until I've been on 3 months, unless I make a special appt (which takes about 3 to 5 weeks to get).

[jules]

did you even have an in lab sleep study or titration?

we hear not very good things about kaiser here - so much depends on which part of country and what your actual insurance covers as it seems not all kaiser contracts are the same

[OCSleeper]

I have Kaiser in So Calif. The quality of the sleep doctors vary. Once I found this forum, the only reason I needed to see them was to get the machine ordered. Unless you're having a specific problem you're just wasting the co-pay for a specialist. The Kaiser RT seem to know more able the machines than the doctors.

The two doctors I saw didn't care to review data from the machine. So, i hope you were able to get a data-capable machine...you're basically on your own. ((Beware of renting a machine from Apria). If you already have the PCP (Primary Care Physician) trained, use him/her.

[Janknitz]

Where are you located?

I have Kaiser Northern California. They do some things for OSA very well, though I'm sure it varies by facility.

Did you know that if you are not happy with the care at your local center, you can ask for a referral to a sleep clinic at another Kaiser facility in your region? It's a pain timewise, but my daughter and I have traveled all over Northern California to access specific specialists and programs.

Here at my local facility, they have a very busy sleep lab system. They test probably 40 or 50 people per week using home testing equipment. If you are found to have OSA (probably 80% of those tested), you go back for a group class about OSA and then you are "invited" to take a CPAP machine home for home titration. Once your titration is done, the doctor will see the data (but the doctor will not see you) and prescribe a machine.

The RT's do all the work, but at my local facility they are WONDERFUL. They communicate by phone, email or you can go in to see them by appointment. They bend over backwards to make sure you have a mask that works for you, a pressure that works for you, and that you know how to use them. They do all the mask fitting and have samples. They will give you as many samples as you need to find the right mask. It's not perfect. They fit masks with you sitting up, but if you want to take 5 masks home to try and come back for more in a few days they are OK with that. They do whatever they can to make it work for you (in the long run, treating OSA will save Kaiser money).

The deal Kaiser has with Apria is the weakest link in this chain, IMHO. I suspect that Apria gives Kaiser a great deal on machines and masks because 1) Kaiser does a HUGE volume of business with them and 2) Kaiser RT's do all the work that DME suppliers usually do for patients. That means that Apria doesn't want to ever SEE the patient (the fact that Apria has some legally mandated responsibility to the patients doesn't seem to matter to them). They MAIL the machines and masks out via UPS, even if you live next door to the Apria offices. The only interaction they ever have with you directly is when they demand their co-payments. Kaiser does the rest of the work, Apria collects its money.

I'm trying not to put expenses on credit cards right now, so when it came time to make the co-payment for my machine I insisted on going into Apria to hand them a check and they were not happy about that. They even threatened it would slow down delivery of my machine because they would not set it up until they received payment. And they wouldn't hand me anything there--they claim that their agreement with Kaiser requires them to mail everything.

The mask Kaiser ordered for me didn't work (Kaiser didn't have a sample of that particular one) so Apria wanted me and Kaiser to pay for a replacement mask. They wouldn't even talk to me directly about it--the tech at Apria relayed all this through the receptionist like playing post office. Of course, they have an obligation to make sure I have the right mask and it really doesn't cost them anything (except the damn UPS postage!) to replace it, but I didn't want to make the poor receptionist deal with my tirade because their tech would not talk to me (and I called the next day when I was calmer to let customer service know I thought her behavior was rude in the extreme).

They are creeps. I have my sample Swift from Kaiser, all I really wanted was the wraps that don't come with the sample. It wasn't worth a fight. I ordered the wraps from CPAP.com. It cost a bit because of postage, almost as much as my co-pay for a new mask from Apria would be, but &^%$% them--I wasn't going to let Apria collect more money from me and from Kaiser after that kind of treatment.

I told the RT's about it at Kaiser and they said that almost all patients who interact with Apria are unhappy, but patients have NO choice. If you have Kaiser, your choices are to pay full price privately or use Apria. We cannot vote with our feet. Sucks! And I don't see Kaiser dropping Apria because of patient complaints. They have a sweet deal going between the two big entities.

Anyway, sorry to go off on that tangent. Ask around and find out if a Kaiser within a reasonable driving distance in your region has a more comprehensive sleep clinic program with patient education and ask to work with that facility instead. Since it's within the Kaiser system, you can usually get that without too much difficulty if you have a good PCP who will advocate for you.

Kaiser has a very liberal replacement schedule if you have DME coverage--new hose and mask every three months, new tank every six months, and they use only the PR S1 series right now, state of the art.

If you can't get a referral to a better Kaiser sleep clinic, I'd suggest filing a complaint with member services. Ask for a referral to another Kaiser sleep clinic or to see the actual sleep physician. (The complaint process is arcane and stacked against you, but I'm all for rattling chains whenever possible).

As a last resort, if you can afford to pay privately for one mask and mask insurance, try working with one of the good internet providers. At least they know their stuff. Once you have settled on a good mask, you can get it on your prescription, and Kaiser (through Apria) will provide it in the future as with the co-pay.

[Magnese]

Hi there,

I've been a lurker for a few months and I felt compelled to post on here after seeing your story about Kaiser.

I am also a member of Kaiser in Socal. About a year and a half ago I begged my PCP for a sleep study because I never felt rested. My Dad has OSA so I figured it was worth a shot. My physician wasn't going to give me a referral but I was persistent.

I was sent to the sleep lab (or ghetto building supposedly housing something resembling one) and given a kit to take home and wear for two nights. Basically the machine measured heart rate and oxygen levels. After two days I returned and gave the machine to the technician who looked at it on the computer. Fifteen minutes later they gave me a RESMED S8 and sent me home for another two days to try it out. After I returned they told me to go home and wait for a call from Apria. I got the call and went in to see my RT. Basically, I was given the bottom of the line M-Star Cpap from Respironics. The RT gave me a brief tutorial on putting on the mask and sent me home. I honestly don't remember anyone having a conversation with me about the different types of masks or anything else related to comfort. In fact, I don't even think there was a follow up appointment scheduled.

After a few nights with the machine/mask (the mask was different and far less comfortable than my trial mask) I realized there was no way I could have the thing covering my nose and and mouth. I have a beard and it was driving me insane. It was at this point in time that I started to research different types of masks (and found this forum). I was thrilled at the idea of nasal pillows because it kept everything away from my face/mustache.

As I researched different masks I started to learn more about the machines. Reading all of the posts about data collection and monitoring I began to wonder what my own data looked like. Sadly, my machine didn't give me access to any of this information and no one at the sleep lab/doctors/Apria had mentioned that it was important. I managed to contact my PCP through the Kaiser email and spoke with an RN who eventually put in an order for the specific mask I wanted to try (Swift II). As it turned out it fit really well and increased my compliance.

Months passed and I began to change my lifestyle. I started to exercise every day and eat differently. As the pounds came off I felt I didn't need the machine as I was sleeping better. I found some of the typical irritations of the cpap undesirable (rainout, dry mouth, feeling ashamed to wear it in front of girls, etc). A few months ago I decided to really buckle down and get back to compliance. I decided to really do my research this time. As I read forum posts from all of the people on here I began to want certain things from my machine.

I want to be able to see my own data. I want a heated humidifier (with a climate controlled hose or wrap so I don't get rainout). I also wanted to try a self-titrating machine because of my weight fluctuation and sleeping in different positions. All of these things made me want to try out the S9 that everyone has been talking about. So, I started with emailing Kaiser and the nurse was super nice. She said that she would try to put the order in for me. I get a call from Apria after a few days and they said that I'd need to pay out of pocket for the machine. They said it was around 800 dollars. Thankfully, I double checked the model and they were going to give me THE SAME MACHINE I ALREADY HAVE... and have me pay out of pocket. I emailed the nurse and she said she had written the order down specifically like the link I sent. After going back a few times she suggested I contact the DME. Contacting them was a good way to give myself an early death. The receptionist was not helpful in the slightest and when I finally spoke to the manager and explained my problem he belittled me, said there was no reason for me to get an auto cpap and said I was wasting my time.

Wow... I was pissed. I ended up emailing the nurse (she had been very sweet and helpful through the entire process) and she said to come in and talk with my PCP. I realize now that I should have done this in the first place. I, like others, wanted to avoid the co-pay. This time though I had done all of my research. I printed out the prescription form from cpap.com. I printed out the exact machine I wanted and the humidifier and climate hoses and came prepared. I explained to the doctor why I wanted the machine and the reasoning behind it. Honestly, the doctor just looked at me blankly. I asked him who was going to monitor my sleep results. Another blank look.... I asked again, "Does anyone look at my sleep results"? He said that if we felt I needed another sleep study I could go back.

I realize that doctors can't possibly know everything.... especially with how fast technology advances. However, I was disappointed to realize that I was on my own with my care. The doctor did put in an order for that specific machine (at least I watched him type something in the computer) and also filled out a prescription for me just in case I have to pay out of pocket. I am still waiting to hear from the DME to see if they quote me some outrageous price that I have to pay out of pocket. Hopefully, the doctors orders will be followed and I will get the machine I want.

I wanted to share my story because if it weren't for these forums I wouldn't of had a clue about what to say/do. I feel sorry for the people that don't even know about internet forums or how to be assertive and demand something from an insurance company. I will update you guys/gals when/if I get my new machine.

Thanks again for sharing your stories.

[Janknitz]

Be persistent with Kaiser and with Apria. Don't let them pull any %$#@ with you. I should have raised hell about that mask situation but I realized certain issues:
1) All I really wanted was the headgear covers, not a big deal--I can even make my own. I don't want to burn bridges totally with Apria over headgear covers when it looks like I'm going to be dependent on them for the long haul for my CPAP equipment.
2) Life is too short for arguing and beating my head against the wall for headgear covers.
3) I am not a Kaiser fan. I'm in this huge fight with them over denying leg braces for night time use for my daughter, who has CP. That is taking a lot of time and energy. The rest is small stuff in comparison.

And keep bugging your PCP about a referral to either a pulmonologist/sleep specialist or better sleep lab within the Kaiser system for follow-up (there's NO way they will ever pay for you to go outside of Kaiser--you'll just drive yourself nuts for trying). If your PCP isn't responsive, find another one.

The first lesson we learned at Kaiser is never pick a PCP from the website listing doctors who are available to take new patients. Those doctors don't have full patient loads for a reason--believe me! (Exception--you might get lucky with a doctor who is brand new to Kaiser). Ask your friends which doctors they like, and then ask those doctors (through member services) if they will take you. Or, if you go to urgent care and like a doctor who sees you, ask if they will be your PCP. It's kind of like some Machiavellian dating service

[Lindsley]

Thank you so much for all your responses!

I have Kaiser in the Sacramento area. I had my original sleep study done through Sutter Health (sort of mediocre study, as I was awake for most of it), was on CPAP for one month with the Remstar Auto A-flex and the Opus nasal pillow mask, then switched to Kaiser as a result of retirement. I had met with the sleep doc at Sutter twice to discuss my results and hear her recommendations. My new Kaiser PCP, who is quite responsive and nice, wrote for a titration study immediately upon hearing I was on CPAP. Like Jankitz's, it was done at home, with a nasal mask that didn't fit me and leaked all night. With much advocacy, I got Apria to mail me the machine sooner than they usually do; as others found, they were remarkably uptight about the co-pay, telling me without provocation they would send me to collections if I didn't pay and asking for a verbal consent to pay before they would mail it. At least it was the same machine I had had with Sutter. I then took it in to the OSA CPAP class, where I requested and was given a FFM to try, the Fisher Paykel Flexi-Fit 431. Because I had been on CPAP for 3 months by then (yes, it took 2 months to get a machine) no one helped me with fit, just gave me the mask and sent me out the door. I had no success with that mask, due to it sliding down and cutting off my ability to breath through my nose, so I have continued to use the Opus and have mouth leaks. I then discovered this forum, hallelujah! I would like to try the Hybrid. and have been in contact through email with the RT, as phone access didn't happen. He never suggested any other mask until I asked for the Hybrid; he didn't know what that was initially, but by the next email decided it was the Liberty one (I'm guessing that's the one Apria carries) and suggested I could make a "mask fit" appt (which takes at least 3 weeks to get) or contact my PCP for a Rx for one. I emailed my PCP, who is writing a generic Rx for CPAP.com, and I had planned to purchase the Hybrid myself through the auction.

It sounds as though if I advocated more I might be able to get Kaiser to cough up for the mask, so maybe I'll email my PCP again and try again to talk with people at Apria. Like others, when I called them I only got a receptionist, who asked ignorant questions then referred me back to Kaiser. At least now I know I'm not the only one! And like others, no one at Kaiser has said a thing about any of the data being collected. My impression of the RTs is that they are totally over-booked and probably don't have a minute to keep up on technology or even to meet regularly with newbies, when we need it the most. I don't know if I have a choice of RTs but don't know who I'd ask for, anyway.

[Janknitz]

Tell your PCP that you didn't get very good service from the RT you had contact with at
Kaiser and you want him to set up an appointment for you with someone else there who can really work with you on masks, look at your data, and go over the report with you. When the doctor makes the request, they pay a little more attention.

Sounds like you have a good doc who will advocate for you. If you still don't get a good response, ask for a referral to another facility--looks like Roseville might have a sleep clinic, or SF or Oakland. I'm in Santa Rosa, and it's a long drive, but I've gone as far as Sacto and SF and Oakland to access various Kaiser specialists for my daughter. It's the same region, so it shouldn't be that big of a deal. They think nothing of asking you to travel if they don't have the specialist you need at your local facility, so why should they complain if you ask to travel to another facility in the region for better care?

If you come to Santa Rosa, I'll tell you who to ask for

[Lindsley]

If you come to Santa Rosa, I'll tell you who to ask for

OK, but I hope I don't have to take you up on it!

I hate to get my RT in trouble, he seems a nice enough guy but just way busy and not too up on things, I guess. Maybe I'll just hang around in the waiting room at the sleep clinic and ask everyone who comes in who they think the best RT is! If nothing else, it'll probably get me some attention

[BlackSpinner]

I hate to get my RT in trouble, he seems a nice enough guy but just way busy and not too up on things, I guess.

Yes but it is their job to be up on things - even if they have to do it in their spare time - just like the rest of us in tech industries. Just think about the other patients who will get this incompetent guy next - they will be in the same boat as you.

[Janknitz]

I don't think you have to get that RT in trouble at all.

Just explain to your PCP that you didn't "click" with the RT you saw and that you feel like you need to connect more with an RT who will take the time to work with you on finding the best mask, who can do some patient education, and will go over your data with you. No judgment on the RT. Give your doctor a very clear "I" message. "I don't feel like I had enough information about my OSA and would like to review it with someone I might feel more comfortable with." and "I need help because the mask still isn't right and that's affecting my compliance."

I sometimes feel more comfortable with these issues in an email to my doctor--one of the nice things about Kaiser is you can email your PCP, and this will give you time to compose a message that conveys your needs and concern. It's also harder for them to ignore something in writing, such as when you say "this is affecting my use of CPAP and my compliance".

It's in Kaiser's best interests to help you be successful on CPAP (otherwise they would not be doing this, believe me!). It's much cheaper for them to provide you with the mask and machine and some patient education than to treat all the health issues that are the result of untreated OSA. But you have to be a squeaky wheel sometimes (most of the time with them!).

[Lindsley]

I guess I will go ahead and make the "mask fit" appt. and see which RT I get and how it goes on a one-to-one basis. After all, I just met him once in a classroom situation, where he was having to deal with many people at once, and since then it's just been by email. It'll be my chance to educate them, too!

Thanks for all your encouragement! I'll let you know the outcome, in a few weeks...

[Mr Capers]

Hi Lindsley,

Be happy, don't worry. Your team is right here.

I'm also Kaiser and my experience was worse after seeing the sleep doctor - so be careful about what you wish for. Here's what happened to me viewtopic.php?f=1&t=47551&st=0&sk=t&sd= ... 30#p431009

The RTs here, "Northern Calif," do all the work and are the only ones who can tweak your machine settings, so try all of them, until you find one you get along with. Your PCP can make an appointment for you and you can use an office visit to do this. As the different appointments come up, you can see what RT you get and try different ones until you are happy. My Kaiser RTs don't ever follow up, so you are on your own. SWS once called it being a "set it and forget it patient." SO TRUE

But, in truth, the group here are your real friends, your team, your support group, your buddies. Don't expect Kaiser to ever be as empathetic, or as up to date, as some of our posters. However, you will need to learn to sort the wheat from the chaff. We have our share of challenged folk who find dial winging on others machines a favorite hobby.

Feel free to PM me if you need some help with this.

Welcome - and thrive - with or without Kaiser

Happy Naps
Mr Capers

[Lindsley]

Thanks for you response and link! Was this doctor in the Sacramento area? If so, would you send me a PM with his name?

I worked for years in hospitals directly with MDs and have dealt with that arrogance and impatience. What I learned is that a doc's "bedside manner" has little correlation with his success as a healer. Some of the most arrogant ones were able to keep pts alive, while the kindest ones made poor judgments; there is quite a bit of "art" in medical decision-making, and some docs have it and some never seem to develop it. So it's just as important for us to be patient and listen to the MD as it is for them to listen to us, if we want to stay alive and healthy! My current frustration is that I did not work for Kaiser, so I don't know anyone to ask about who are the good docs and RTs . The worse situation to be in is to have both an arrogant and incompetent MD or RT!

I'm already feeling more supported by the forum here than Kaiser, so thank heavens for that! I'm learning a lot about sleep disorders and treatments, and hope to have more good nights as time and learning go on...

Lindsley

[xyz]

> I have never met with a doctor (just a RT)
> nor met with anyone from the DME provider, Apria.

Do the RTs work for Kaiser or for Apria?