How to be an Effective Advocate for a Disabled Patient (The Disabled Ginger blog)

Discussion in 'Home adaptations, mobility and personal care' started by ahimsa, Jul 25, 2024.

  1. ahimsa

    ahimsa Senior Member (Voting Rights)

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    How to be an Effective Advocate for a Disabled Patient

    https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for
    Content warning: She lists some examples of patients who have died in the hospital including some who had ME/CFS.
     
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  2. RedFox

    RedFox Senior Member (Voting Rights)

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    One time I was having either a migraine or a stroke. Not only was I getting the characteristic visual aura, I was having trouble speaking and my right hand was tingling. Because three separate nerves supply the hand, but most of it felt funny, I knew it was central, not peripheral. Instead of going to the ER I waited a short time (10 minutes) and it passed. But the possibility of being gaslit was definitely a factor in my decision.
     
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  3. Mij

    Mij Senior Member (Voting Rights)

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    @RedFox

    I'm curious if you experienced migraines before this incidence? I had a friend who went to the ER in her late 50's from the same symptoms and the neurologists told her that it's not normal to have a migraine at that age if you've never experienced one before.

    They did an MRI and it was normal.
     
  4. RedFox

    RedFox Senior Member (Voting Rights)

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    Yes. I was worried but I'd have been a lot more worried if I hadn't had migraines with aura before.
     
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    “When you are hospitalized - you give up your agency. You are put in the control of doctors & nurses who may have limited understanding of your condition. What & when you eat, when you take your medications (and what medications you’re given)…it’s all out of your control”
     
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    “Which brings us to the need to have an advocate. If you have the luxury of choosing your advocate (many of us do not) you want to pick someone who is knowledgeable about your conditions, readily available and calm and cool under pressure.”
     
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  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    “Have a detailed care plan and advanced directive they can follow which CLEARLY states your wishes should you be incapacitated or unconscious and unable to make decisions for yourself. Make sure your advocate keeps copies of these documents in a safe place and brings them to the hospital.”
     
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  8. Wits_End

    Wits_End Senior Member (Voting Rights)

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  9. bobbler

    bobbler Senior Member (Voting Rights)

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    I think these sort of things are really important documents for us to develop. And get specific for different severities/situations if necessary.

    But as others have said: advocates are desperately needed, particularly even more desperate by severity vs situation, just when you can't easily have energy or feel like you look convincing to explain all this. So something that helps the chances of training or finding ones who can actually help and avoid the 'help' that isn't helpful would be a high priority.

    The opening line for this is a good one.

    I'd like to make sure things covered for ME absolutely do touch on making sure that our concerns based on experience and history that are very much functional 'watch out for the fact they might want to be doing this to me, or saying these terms which are red flags I might be sent down a harmful path' are not instead put down of signs of 'catastrophisation'. At that point the advocate could become someone inadvertently joining the problem or misleading the person into thinking something is trustworthy simply because they don't know/get all that context.


    What a great cover-up bps created for themselves

    I can just imagine trying to explain some of the awful stories that have happened to someone I didn't know and imagining the potential for how that would go down.
     
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