54 Comments
Aug 21Liked by Neko Case

I've heard the magic words "So you are denying me care? Please put that in my chart." can work wonders on healthcare people who are doing something more like thwarting healthcare than providing it. rehearse and unleash. you deserve the best.

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Hello!

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hiiiii nice to meetcha!

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Aug 20Liked by Neko Case

I've got nothing to add to your discussion of gatekeeping and shitty patient/customer service. But when you mentioned opening the card and seeing Jerome's paw print ... I felt that. Been through it too often of late. I came across a card from the vet that accompanied the ashes we picked up and it had a clipping of our cat's fur in it and I freaked the fuck out. I thought I had processed all my grief but there it was, fully triggered over a few strands of silky black fur. Fuck. I know it's part of the bargain we make when we open our hearts to our animal friends but fuckity fuck fuck it's hard.

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I wish I got as good of medical care as my dogs. Their vet and techs literally love them and that is not an exaggeration. Can you even imagine, your doctor LOVING you?!! I'm someone who has learned the hard way the importance of self advocacy in health care, and yet it is so hard and I am still in the middle of my own yearslong demand for answers (my frustration drove me to writing about it on substack lolz). Hope you can get your good doc on the line and find a good dermo to deal with the issue. 💕

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RIGHT!?

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On a very different note, please give Tucker a huge shout-out for his little-known masterpiece of environmental sound art, Brokenhearted Dragonflies!

25 years ago I began a foray into the best of the world’s natural sound recordists and studio wizards, launching a label called EarthEar, as well as an extensive retail sales catalog of over 100 titles from producers around the world. Brokenhearted Dragonflies was without a doubt one of my favorite dozen or so titles out of all of those—Tucker recorded it in Southeast Asia somewhere, and it’s a vivid sonic immersion into the psychedelic intensity of insect sound— for some it might spin them into a bad trip, but if you can slip inside the sound, it becomes an experience like no other! (FWIW, I often describe Neil & Crazy Horse in similar terms, of slipping past the onslaught of intensity and getting inside the powerful spaciousness of their chamber rock’n’roll trance)

I haven’t looked around to see if Dragonflies is available online or on YouTube or someplace (I still have the CD at my fingertips!), but it’s well worth searching out.

Definitely get him to play it for you while you’re there!

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Tucker says he really really appreciates your thoughtful note. He is very moved. And Brokenhearted is on vinyl, but not streaming :)

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I'm so glad I saw this today! I'm a musician, visual artist, and higher-ed art teacher and I've been looking for environmental sound recordings for students to listen to and write about in prep for their own audio projects. This will be one of them! :)

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Aug 20Liked by Neko Case

I have too much to say on this. I had a lot of trouble with GPs which later in life I realised was because I was diagnosed with anxiety and depression as a teenager, female and mixed race… I found a great talk on this re women’s experience in healthcare which I hope to put a link here for later.

As I’m in a rush now I’m just sort of listing things that I do.

I was gaslighted by several nurses and doctors. I flew to a hospital in India where i planned to stay for natural treatment & whilst I was there I got xrays etc all done in one day for almost no money. I took the X-rays home. Passed the X-rays onto an unsuspecting secretary who uploaded them to my file and then my doctors had to respond to the issue which they previously ignored/didn’t look into but now the proof was there.

This is just one story of many struggles and I’m in a rush now but until I can write more, I will just say that I record as much communication as possible. I have worked as secretary for the nhs for many years as a temp when I was younger, and there are good secretaries and there are maniacal secretaries who get off on the power and are completely oblivious to the fact that the people they deal with need healthcare.

Before I handed in those tests it was a secretary who got mad at me for no reason and then realising what she had done, rushed to the manager and put a note on my file! For me when I go to the doctors now, I go prepared for battle, I don’t get angry unnecessarily but I make sure they know that things are being recorded, that I will file a complaint and i even have considered taking a second party along recently if need be. Our health affects our lives , our ability to work, I’m sorry for the rant but it makes me so mad to hear of people doing this, it’s so unnecessary when they could just help.

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founding

I am so sorry that you had to deal with this shit. They were all about their feelings instead of your physical body and peace of frickin’ mind.

I worked for 20+ years at the Phoenix Veterans Hospital before I finally managed to move from there to Southern California.

Even in that system, which was as close to socialized medicine as we get in this country, (I think) it became harder and harder for me to provide the kind of bedside care that I became an RN to provide ~ compassionate, skilled, attentive.

I walked away, Neko. I was and am quite healthy, but the system was crushing us health care workers ~ I couldn’t sleep at night anymore.

It became about boxes checked on a computer ~ most of it CYA shit we don’t actually NEED if we are giving the care the patient needs

Is Ophthalmology an option? It might be easier to get in, and even if it’s not their purview, once you are in they can look at it… and then a referral will maybe make things easier.

You shouldn’t have to do that, but I became a disability paralegal and I am just thinking, but it’s before coffee thinking, so right now I am just mad about it. I just found out that I have Bad boundaries when it comes to your health.

I will be vibing Blooming Health in your direction.

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Bureaucratic gatekeepers (and their robot guard dogs) are the bane of my family's existence. My daughter has a host of medical issues (cerebral palsy, epilepsy, autism, ADHD) and trying to jump through the hoops of both the broken healthcare system AND the public school system has more than once reduced my wife to tears and me to Unabomber-levels of rage...honestly it's probably been easier to deal with vets and getting medical care and surgery for our dogs (one went blind, the other needed a hip replacement) than on staying on top of the ever shifting, unstable landscape of dealing with my daughter's care. Just last month, one specialist she sees maybe once a year announced that they were moving to a "subscription based" plan!!! Like $150 a month just to have the opportunity to make an appointment!!! And they would not handle ANY responsibility of dealing with insurance!!! Every year, some new ridiculous hurtle.

Needless to say, I feel your pain...good luck continuing to storm the gates...

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So sorry to hear how hard it is over there.

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Aug 21Liked by Neko Case

Oh Christ am I being hindered by gatekeepers and more at present...

Been a participant of a safe parking program here in San Diego since late 2020. My Ranger truck died in early 2021, so had to leave program and a sibling reluctantly let me sleep on living room floor near six months. With SSI I bought a used Trailblazer and returned to lot.

In Feb this year was diagnosed with heart failure. Not until Aug 2nd did I have a successful operation. But just a few weeks prior to op the parking program booted me out due to reasons I'll refrain from detailing. Other than I was in the right and organized a packet with documentation proving I was honest and forthright and a bad apple of a caseworker within program totally lied.

Mind you, my dismissal from program was only a few weeks prior to scheduled heart surgery! So. I was back to parking on unsecure public streets, no porta potty access which was a godsend given the diuretics prescribed. Was stressed and depressed beyond belief. I wanted to be relaxed much as possible prior to surgery. No chance

Anyway, few weeks back the safe parking program offered me opportunity to come back. But since it has been like pulling teeth. Given recent heart situation they are paranoid I'll drop dead on lot I guess. Hell. I dunno... They said I need a note stating I recovered fully and can continue living out of my vehicle.

But NO ONE will provide me such a note. Not my primary physician. Not the cardiologist who performed procedure. Not my health insurance provider. Not MEDICAL. Absurd..... No note, no getting back in program. Spent six hours on one day just phoning and driving all around creation to everyone I've associated with since Feb. Burned out, man...

Cardiovascular Institute of San Diego who i consulted and tested with past six months also provided no note. I asked straight out, This is all malpractice paranoia ain't it...? Yes, they admitted. Total ass covering and gatekeeping, by true masters, those doctors assistants....

Finally, I suggested how about my hospital discharge papers. Might that do in lieu of a doctor's note which days are now over for apparently. As of today am awaiting word from Jewish Family Services, who run the safe parking program, if they'll accept hospital papers as enough to get my miserable ass back on parking lot.

All I know is the humongous stress of past several weeks has been a great stress test for my revised ticker! Sorry I rambled so, but its sure been therapeutic, folks...

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Ramble on. That's why we are here. And may you sleep and rest in security and peace of mind.

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I am a family doc in Maine and have always said that I am as good as the people answering my phones. If my patients can't get to me, then I can't help them. As with most practices these days, I now work for a large "health care" (it's neither healthy nor caring) system and thus have a lot less control over who is working the front desk than in days past but I do have a fabulous woman who supervises our office and will do what she can to help rectify bad behavior. As long as capitalism is running our country's health care, we are going to suffer needlessly through the referral process (RIDICULOUS since all a physician does is press some buttons on a computer and who in their right mind is going to 'refuse' a patient a referral); the unnecessary burden of prior authorizations for medications and imaging studies that insurances don't want to pay for; and... so much more. We are burning out on this end of the system too.

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I show up at a lot of community meetings in Minneapolis to advocate for my community, primarily my unhoused neighbors. Your experience feels so relatable to the way politicians and other bureaucrats will turn things back on us and make us seem unhinged for being impassioned when they’re being obtuse and robotic. They’ll give us like a minute in breadcrumbs to speak up on a complex issue, and then when we inevitably get more elevated in our voices because of being told to shut up and sit down in the middle of making an important point, they tone police the hell out of us. We’re like….this is life or death for the people we’re trying to advocate for.

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My least favorite part of being an adult is the near constant revelation of how fully in the toilet most things have become. 🚽 💐

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Spot on, Jestin. I believe the technical term is "enshittification" and it. Is. Rampant.

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O.M.G. So true. After an frustrating incident of not being able to reach my GP, the next time I saw him he gave me his mobile number and said, "Never again, text me next time". He truly empathized with the frustrations that Big Healthcare has thwarted upon us, and him. He has since retired, and at a young age, after being ground down. I never had to text him in the years that followed that incident, but was so grateful to have a backdoor and his trust. Now I've had to start over with a new GP, new location, and I feel like I'm visiting a fast food joint.

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So many health care professionals want to focus on patient care. When you add the pressure of providing that care and the disappointed feelings that can come from patients and their families, added to the administration in the industry due to liability, Rx and regulatory compliance, it can grind them down.

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SO fucking relatable. I don't really have any hacks other than asking friends which places and doctors they prefer (an option you don't seem to have as much out there in the swamps). I recently had a doctor's office put a hold on a prescription refill because they said I had an outstanding $20.00 office visit bill. I called back and tried to pay it and they said it was a mistake and to ignore it, but they still had to have a hold on my prescription until it was resolved. Yet there was no way for me to pay the $20.00 because it was a mistake in their system. THE HELL, PLEASE FIGURE THIS OUT.

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I have a friend who quite accidentally got some “chronic pain” box checked by a gatekeeper type and then couldn’t find a specialist to treat her back because she was seen as drug seeking. Those little typing hands hold a lot of power in the initial phase of trying to get seen. And then its all about the INSURANCE COMPANY. 🤦

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I feel this shit so about gatekeeping at the doctor's office so hard. Why is it so incredibly difficult to get anyone to just actually listen!? In fact, almost anywhere...I feel like the human race has lost the skill of listening comprehension completely - at least for 50+ yr old women with gray hair, like me.

So sorry to hear about Jerome. Losing a doggy soulmate is so hard. That's why they make puppies for when we are ready for all the light and joy and insanity they bring. Neko, I feel like you are saying exactly what I am feeling so often. Sending love and understanding...

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"Her last-second farewell, “all your appointments are cancelled!” email sang like a compassionless fart." - I am so sorry you are dealing with the endless red tape of just seeing a fucking doctor in these United States, but this line is so hilarious and poetic. I giggled through my rage reading the rest.

The only thing worse than the impenetrable fortress of bureaucracy is knowing it's just a robot on the other side. At least with a human you may catch them in a soft moment, and they have a job.

Wishing you no fucking cancer.

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