Stuck in appointment hell. Help
September 18, 2023 12:19 PM   Subscribe

I'm at my wit's end. I keep trying to call Kaiser to make an appointment for the port removal (chemo), but it's just such a CLUSTERFUCK. This world was NOT designed for Deaf people, period.

My oncologist put in an order for the port to be removed. I tried calling four times today. First time, they tried calling the general surgery department but they were unavailable, and advised me to email my oncologist to make the appointment. I did that, oncologist said she was unable to, put in a note for them to email me via the Kaiser portal and suggested I call again.

I called again, was transferred no less than three times, to a dead end voicemail box. Called again, explained my plight, was no help, so I asked to talk with a supervisor. Explained, sup was helpful, tried calling surgery but no go.

I explained I use video relay and often cannot take calls so messaging via the portal was the best way to go. She noted the record and apologized profusely, saying that specific department was the only one who could help me.

2 hours later, and ALAS, a missed call. No email. SIGH. They tried calling me, which of course didn't fucking go through. Now basically we're back at square 1.

I just want to make this appointment. I cannot online, no way to. Basically, this is IMPOSSIBLE and my anxiety is triggered — helplessness. I am NOT the best version of myself today.

How do I fix this?!
posted by dubious_dude to Human Relations (15 answers total) 1 user marked this as a favorite
have you messaged them on the portal?
posted by fingersandtoes at 12:26 PM on September 18

Response by poster: have you messaged them on the portal?

Unfortunately, how it works on Kaiser is that they need to start a message with you on the portal, THEN you can respond/initiate conversations, but until then, you need to wait for them to message you. That's why the supervisor noted the record that they need to message me, not call me (due to video relay/missed calls), but that doesn't always work.
posted by dubious_dude at 12:31 PM on September 18

Kid of a Deaf person here. Have you tried calling your oncologist again and asking them to please coordinate this with surgery for you? My parent has had some luck doing it that way and once he can get to a sympathetic nurse or front desk person somewhere in the organization, they will often take care of it for him.

If your insurance is through your employer, could you also ask HR if they'd be willing to assist? I work adjacent to HR and they would do this at my employer no questions asked. If not through HR, do you have a case manager with insurance who could help?

I am sorry you have to deal with this. The medical system fails hearing impaired and Deaf people in so many ways.
posted by notjustthefish at 12:44 PM on September 18 [6 favorites]

Most offices are staffed so thinly that one absence can upset everything. It's the Monday after a big religious holiday and the person who picks up the phone might be out. Give it another day or two.

You might also reach out to Patient Services (or a similar named department) for assistance with scheduling if one is available- we received escalation if a patient was having trouble scheduling and it helped them.
posted by ThePinkSuperhero at 12:49 PM on September 18 [2 favorites]

If you have some time to throw at this, you could try going in person to the office of the surgery team and asking if they could assist you with scheduling. They may not typically handle scheduling at the check in desk, but if you explain the circumstances they may be able to make an exception or connect you with someone else who can assist you.
posted by bluloo at 1:26 PM on September 18

Response by poster: Update: I reached out to my oncologist again, who said that they don't schedule/coordinate port removals, and that I needed to reach out to general surgery. She put in a referral, but the referral simply takes me to the office to set up the surgery, and would have a co-pay. This was not needed prior to the port installation. At least she tried, I guess.

I have messaged the doctor who did the port installation surgery, in hopes that he can help. If not, I'll call Member Services and escalate if needed. I will also try bluloo's suggestion and go in person if all fails.

I am sorry you have to deal with this. The medical system fails hearing impaired and Deaf people in so many ways.

Thank you. Yes, it does. There are actually two points of failure in this specific situation.

Firstly, them not following the instructions to email me, utilizing reasonable accommodations (this has been an ongoing issue with Kaiser, not just in this particular situation), and instead, calling me at a number I use for relay/interpreters, and not one that I can readily take calls. Problem with this is, if I miss a call, that means I'd have to go back and go through the phone tree/maze again, and basically hope I reach the same person, or someone else who can help, but sometimes it must be that person. Thus, the "back to square one" comment I made.

Secondly, miscommunication. One person said they didn't see any referral for the port removal. Another said they saw it, but that they needed to call General Surgery. Missing or busy staff at General Surgery, thus unable to help/make the appointment.

Together, this has caused a perfect storm, exacerbated by the inability for me to take in calls. It's sheerly exhausting having to deal with this, ON TOP of still processing the difficult decision to discontinue chemo, and having to explain everything repeatedly to new people who might or might not understand fully. Issue is, Kaiser is a HUGE bureaucracy, and honestly, most people there really don't seem to truly get it or care. So, it's pretty depressing when a situation like this happens, because it truly feels helpless and I feel like no matter how diplomatic/kind I am, there's nothing I can do to change the situation because Kaiser's system can be inflexible and rigid. In short, I feel defeated.
posted by dubious_dude at 1:46 PM on September 18 [5 favorites]

(( metahug ))
posted by Dashy at 2:09 PM on September 18 [7 favorites]

I'm not sure where you are, but in the DC area there's a Kaiser Member Relations office. You could contact them, though I don't know how timely their response would be. And once this is resolved, if you have the energy, you should contact them again to let them know about the screwup. You could just copy your notes above.
posted by Mr.Know-it-some at 2:12 PM on September 18 [1 favorite]

I am so sorry that I cannot help you in anyway. I just wanted to send you virtual hugs from Sweden. You are trapped in a nightmare and that fucking Kaiser has a lot to answer for.
posted by Bella Donna at 2:21 PM on September 18

Will drop this link here. It won’t help you now but if you ever decide to sue … please let a moderator know if this is over the top and you would like to have it deleted.
posted by Bella Donna at 2:27 PM on September 18 [2 favorites]

Another option:
If you have an oncology social worker this would be completely in their wheelhouse to help you solve as well.
posted by AlexiaSky at 3:08 PM on September 18 [11 favorites]

Your port will need to be flushed regularly if it is not removed, but if it is anything like mine it doesn't need to be removed urgently and can handle being left in situ without strictly scheduled maintenance. I've had mine for six years now and they finally agree they ought to set me up for removal... but it took them five years after my last chemo treatment to feel that it was a slightly better option to remove it than to leave it where it is.

During the pandemic lock down winter I opted to leave my port un-flushed, as I did not want to bring my nasty dirty germs into oncology with all the immune suppressed people, and I only resumed getting the maintenance done once lock down ended. This wasn't optimal but my doctors didn't have any concerns. They said I should make an appointment for the next flush when I felt the pandemic surge had abated enough.

So while I don't want to downplay your frustration and the kafkaesque nature of the system you are up against, I want to reassure you that there is a high chance that there is no medical downside if you can't get through to anyone for awhile.

I have had some success simply walking into the department where they do things and telling them I want to make an appointment because I have never been able to get through using the phone. If you have any other appointments that will take you to the hospital in the next few weeks you could try that option - just presenting yourself at the General Surgery Department counter and explaining your issue.
posted by Jane the Brown at 9:23 PM on September 18 [5 favorites]

I would just straight up use 711/TTY to call KP and "talk" to member services, since clearly calling the regular numbers aren't working.
posted by kschang at 9:35 PM on September 18

Can you have a hearing friend help?

obviously you shouldn't have to, but if that might speed up calls it's worth it.

When it comes to stuff like this, I do not worry about being a Karen at all and will keep asking up the chain.

A friend of mine wrote an oncologist a letter and mailed it on behalf of a friend of hers that needed an earlier appointment. It worked.

Aside, kinda: I was having a terrible time communicating with my pain management dr. The receptionist wouldn't return calls even if they were v important, there'd suddenly be issues with appointments and they'd scold me. It was a mess. When i messaged my dr directly she called and let me know she was in the middle of "replacing" her front office staff. I was so relieved to hear she knew it was a problem and was working on it. It helps me to think that about other practices.
posted by mermaidcafe at 9:36 PM on September 18 [1 favorite]

Response by poster: Good morning. Another update: Got an email this morning and the procedure has been scheduled. Whew. Glad that was fixed; emailing the original port installation doctor seemed to do the trick. Will definitely contact Member Services to give feedback on the whole experience, though.

Also, just as a quick pointer/tip ("good to know") — a vast majority of Deaf people no longer use TTYs. TTYs were ubiquitous back in the 70s-early 2000s, but with the Internet, we have widely moved to online relay services. Text relay online, accessed by a website (Sprint-IP, for example) was a huge thing in the 2000s, as well as video relay (in where the Deaf person connects via webcam with an interpreter, who is also on webcam) took off and is now a very widely used medium of connection. Text relay online and video relay both are our tools now. I haven't even seen a TTY in person in a long time. When I attended Gallaudet University back in the mid/late 2000s, there were no TTYs to be seen on campus; instead, there were many video relay booths/banks.

Most elderly Deaf people have a dedicated iPad/laptop/TV setup with video relay set up. Many of our TTYs have been collecting dust for years. :) it's a bit unfortunate, because many people/corporations/governments still are in the mindset that TTYs are what Deaf people use primarily nowadays, which is not true at all anymore. So, they offer TTY numbers to be accessible, but what they don't realize is that TTY use cases today are very scant. Some companies have moved to video services, in which an interpreter joins (Kaiser uses this on their Telehealth services), but most of the time, you have to call and use either video or text relay. You might also have noticed that some news channels show a live ASL interpreter on the screen, especially during emergencies. This is a move up from captions, because many Deaf people are language-delayed and cannot read/write well. It's interesting how access has evolved over the years! Wanted to share to help educate the community — nothing bad at all :) we all learn something new everyday!

Appreciate all of your responses and helpful suggestions.
posted by dubious_dude at 6:46 AM on September 19 [22 favorites]

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