So we know, and our doctors know, we hold them to a high standard of care, expect them to treat us as chronically injured in need of long term care than does not harm us and that we are not faking or exaggerating what our brain injury does to us any more than someone with quadriplegia does their disability, I propose we begin having the doctors we see sign this Brain Injury Patients’ Bill of Rights and if they do not that we go to doctors who will. Thoughts? Suggestions? Ideas for changes (what should be added, removed, etc.?)? Brain Injury Patients’ Bill of Rights We the brain injured name, assert, and require rights which by common decency ought not require statement or demand but which the current state of common medical practice requires. We have a right to be the primary person in charge of our care (or our caregiver if they are our legal guardian), to make the decisions regarding what testing is best, if any, and under what circumstances that testing will occur so that it will not cause us harm. Every brain injury is different. You may have seen one or ten thousand people with brain injury before you see me, but not one of them has my brain injury. Do many of us have many things in common? Absolutely. But the brain is the most complex organ in our body, controlling everything about us, so any combination of things can be scrambled. Do not make assumptions about my brain injury or its effects or my capacity. Ask me or my caregiver. We can answer whatever questions you have. You are a partner in our care, not a dictator or judge. Brain injury is physical harm done to organic matter in our brain. We have a right to be trusted regarding our experiences and challenges and successes and needs and symptoms rather than to be presumed to be faking or exaggerating, or treated as if our issue is psychological. We have unseen physical damage. Because of this, things unseen or not realized by you can deeply harm us. This is not psychological, but use responding to protect ourselves against real harm that we really pay a price for. Respect and trust that. For example, you may not even hear the HVAC system that is pulsating and exploding in our brains. So what? We do and it has a torturous effect on us. Once brain injury is established by means of objective testing or scans, we are to never again be treated as if no one knows the source of our symptoms. We are to receive accommodation so we have access to medical treatment without needing to recover for days from the overwhelming of our brain by stimulus others may not notice or other issues specific to our brain injury. We require your inquiry toward understanding and patience along that journey rather than judgement at what seems odd, out of place, objectionable or otherwise wrong in your perception. Just as blind people may cross a cluttered room in the complete dark while a seeing person would stumble, so can people with brain injury who have learned to adapt do amazing things. Rather than question the brain injured person’s integrity, be amazed at their resourcefulness, ingenuity, and inquire by what mechanism they have made progress to perhaps others can as well, in the same way you would admire the blind person who has learned to navigate their world. This document is not legally binding. It is, however, morally binding. By signing it, you the doctor I hope to see, agree morally with the above rights. This is not about liability, it is about with is right. If you can not sign it for any reason, please tell me and I’ll be on my way. If you choose to sign it, thank you, and I look forward to working with you for the best care possible for my brain injury. Signed by Doctor:______________________________ Date: ___________________ This Brain Injury Patients’ Bill of Rights is created by Patrick Jones of MindYourHeadCoop.org
Posted on: Fri, 14 Mar 2014 17:44:06 +0000
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