How NOT to treat disabled patients

Medical personnel providing a service.

JUST BECAUSE THEY ARE HEALTHY AND WE ARE NOT

When did things become BACKWARD???

When did THEIR time become more important than ours?

When did CLIENTS become patients?

When did their needs to be in control become more important than the clients’ rights to timely and adequate and compassionate service?

When did their convenience supersede ours?

When did taking care of disabled clients become a burden to them, an inconvenience to their mission?

When did their control become more important that our PAIN?

When did it become acceptable for them to frighten patients, to threaten them with dire consequences for not obeying instructions to the letter, to TELL them they will end up in the ER with a massive attack of something? (This has now happened twice.)

When did THEY end up with all the cards – and the self-righteous belief that they know best for OTHER people with REAL LIVES?

This is the letter I would LIKE to send to my medical services group – if I dare, once I have carefully weighed the consequences to my future treatment.

Think about that: I have to worry that they might be bothered by something I, the person responsible for paying them, might say. As nicely as I can.

First, though, I would like to say: don’t mess with a writer – they are good at nuance, both reading it and writing it. Not on the spot, of course – that’s for narcissists and sociopaths and politicians and comedians – but afterward, when they’ve had a chance to think.

And to realize what just happened.

And rewrite what you think just happened into the correct narrative that takes the CLIENT into account.

Except rewriting the narrative created by the thoughtless ‘professional’ requires 1) rereading it (I won’t – too negative), and 2) putting in an enormous amount of my own time – knowing it probably won’t work. Or change anything.

THE LETTER TO MEDICAL PERSONNEL AT XXXXX which I may never send.

Because I need some kind of medical care, and all of these are similar in that they think they know it all, and they OVERWHELM you.

My mind keeps nagging about the letter I should write to my medical providers about energy, visits to specialists, and fear-mongering. Which was applied to me, a disabled person, at the end of a too-long-for-a-disabled-person day.


And the tone of the after-visit summary took my breath away – and made no mention of or accommodation for that disability which caused so many of the problems.
Bullying a disabled person is NOT nice.

I will NOT have the procedure unless I decide it is necessary, there are several more worrying symptoms, and they don’t respond immediately to medication.
And do NOT appreciate how I was treated so cavalierly.

I need to write the letter so it appears in my medical record, and I can point to it, but I don’t expect it to have any effect on anyone there.

Do NOT treat disabled people the way you treat normal people – we can’t take it.

And no, it doesn’t NECESSARILY help to bring someone else along. Then I have to deal with THEM, too.

The calculus of what I can take vs. what I need is ongoing: don’t assume, ASK.

And more than asking, could you make a climate where I will think of asking myself, EVEN when exhausted?

Thank you.

CLIENT (person who pays the bills)

The above is not coherent – I’m still going to let it stand, because the incoherence is generated by the system.

I’ve let this one stew for almost a month, and I’m still angry. I was going to just let it drop, leave the unfinished post among the almost 100 draft posts I never finished.

Not naming names – and I’ve decided it isn’t SAFE for me to let them know what I really think, so I’ll keep tweaking the interactions (as in my previous state – which was as bad or worse) instead of taking them head on.

Other options to minimize the problems

One is to do as much as possible via video visits; those are usually on time, one-on-one because the provider isn’t popping in and out or pawning you off on a nurse.

Another – based on my last visit to another city for treatment – is to make sure you have done the paperwork part of a visit SEPARATELY via video BEFORE the in-person appointment. I find it a major problem to have filled all the paperwork before the visit, and to be grilled over every single thing in my medical history again anyway.

I will explain that it is very difficult for me to do BOTH in a single visit – and, by the time I get the service, I am exhausted and frazzled and not being as coherent as I tried to prepare to be.

LEAVE the minute it gets to where I can’t keep going. I keep trying to respect THEIR time, at the cost of trying to continue to talk and even be awake and coherent when things go on too long. Going back is not a great option, but maybe I can finish by video.

Stand up for myself in some small way each time.

Say, “This is not helpful.”

Risk being labeled difficult.

Complain to higher management – with specifics (respectfully – that writer nuance).

Suggestions?

Because the stress of doctor visits has gotten to the point that all I want to do is avoid them.

**********

8 thoughts on “How NOT to treat disabled patients

  1. Widdershins

    It’s a delicate balancing act, isn’t it, between speaking our mind and not hurting their precious fee-fees?(feelings) And there’s no easy way out of this dilemma, especially when they know that we know that we need them to stay alive, or at least maintain our quality of life.
    May you find a resolution that doesn’t take too much of a toll on you.

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  2. acflory

    Ouch. I have no idea what happened, but having been called ‘Doctor Mum’..to my face by a specialist who objected to me going online to try to learn about the Offspring’s health problems, ..-takes a breath- …I can imagine. What I can’t imagine is how your health service/health insurance/etc works because ours is very different.
    You mention a permanent health record. What is that? Who keeps it? Who administers it?
    Here, there is a fledgling medical records thingie, but it’s opt in and most of us won’t because a) govt software is notoriously vulnerable to hacking, and b) because we don’t trust the govt not to use that medical information for ‘other’ purposes.
    Anyway…this is what I suggest. If you have a lawyer, employ that lawyer to send your health service a letter of demand. The letter should state how you want your visits to be conducted, including the taking of blood pressure etc. I would also suggest that the letter demand a full and unabridged copy of exactly ‘what’ is on that permanent health record of yours.
    If the service provider doesn’t co-operate, surely you can go to another private doctor/specialist/clinic/whatever?
    If the service you are paying for is inadequate to your needs, you have the right to complain, stop paying and take your /business/ elsewhere. But first, get someone else to be your spokesperson, someone they can’t bully. -hugs-

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    1. Alicia Butcher Ehrhardt Post author

      There are basically three options open to me here – 3 local clinics in our city, each with a hospital here or in Sacramento, and a whole set of specialists. The one we picked seems okay, but this specialist required a trip to Sacramento and it is a long trip for me. The local doctor, who I see on video half the time, is good – seems biddable. They are also physically close – two very long blocks – so in reasonable weather I can ride my trike or Airwheel over there.

      The idea of getting a lawyer involved would probably result in ‘you have 30 days to find another doctor,’ which has happened before. Unless there is damage – which requires other doctors to corroborate – you’re not going to get anywhere with that. But I will consider it. Unfortunately, if you don’t do what they tell you to do, they have the right to not treat you. Goes both ways. It would be inconvenient to say the least to have to go farther away. At this point I’m not burning bridges, but I am taking control of a lot more.

      I’m complaining that the system of service for clients is rigged against us. It should ALWAYS be up to the client to get the risks from the providers and then decide.

      I may have to play some of the disability cards, because I don’t have the energy or the stamina to get what I want otherwise. ‘Reasonable accommodations’ are what I say I need – they have to somehow prove I’ve asked for something they can’t provide.

      People who have national health service (everyone else in the developed world) also have problems; they’re just different ones. From what I hear, it can take a very long time to get some specialists.

      I AM a PhD – and the answer to Doctor Mum or Doctor Internet is that they have had a few hours of training – I have 31 years of dealing with some of this stuff.

      When we found the right sleep specialist for our daughter, and her Non-24, it was BECAUSE she had two parents who figured it out – all the sleep specialists we’d seen until then were useless and ignorant and incompetent (hindsight).

      It’s a losing battle – thanks for letting me rant.

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      1. acflory

        The Offspring has sleep issues too so I empathize totally. And I totally agree about the ’31 years of dealing with some of this stuff’. I actually believe that most doctors and specialists aren’t actually good diagnosticians. Too blinkered, perhaps. -shrug-
        Rant as much as you like. -hugs-

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  3. Alicia Butcher Ehrhardt Post author

    I went back to a FB post I made the day after the visit on June 9, 2021, which caused this post and found I had written:

    “Going to the doctor yesterday for a needed visit for a new medical problem (possibly minor) showed me how far from understanding our energy needs the medical profession is.

    Even though they let me lie down in the examination room for a good while, the whole tone of the after-visit notes was ‘fat, too talkative, lying, uncooperative woman.’

    Wow. I can’t do this.”

    I can’t even go back to read those after-visit notes (pages and pages and pages – they love their forms) to see what it was that triggered my reaction. The one I remember said ‘Refused blood pressure measurement’. I didn’t. I asked nicely if they could take it at the end of the visit because the stress of the visits always raises it, and whenever they take it again after a successful visit, it’s back to something reasonable – but that other, elevated, one is the one in my records. This place forgot to ask me again at the end – and then entered that incorrectly in my PERMANENT medical record.

    The amount of time it takes to straighten out ONE of these little ‘incorrectnesses’ can be days. I don’t bother. But I know they will be there when some ER attending decides to take a quick look – and will bias my care.

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  4. Lloyd Lofthouse

    When?
    it was in the 1980s when Ronald Reagan was president.

    In the 1980s, the tide of public sector expansion began to turn in many parts of the world. In the United States, the Reagan administration issued new marching orders: “Don’t just stand there, undo something.” A central tenet of the “undoing” has been the privatization of government assets and services.

    https://hbr.org/1991/11/does-privatization-serve-the-public-interest

    The privatizers are not done either. They are still doing all they can to get rid of the public’s police, the public schools, the public libraries, the public roads, the public’s military, the public prisons, et al. They want to turn every public penny into profits for the few. They want to get rid of the public sector and siphon the public’s money (taxes) into their bank accounts while charging additional fees to the public for the same services their taxes once paid for.

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