Patient advocacy
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- Emma Jane Grey
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Patient advocacy
- Learning to stand up for oneself, learning to complain on one’s own behalf, even when justified in depth, is one of life’s most needed and most difficult skills. It requires emotional and verbal competence. Even confident people don't always do it well, especially if they have been living in a perpetual state of high anxiety and stress.
- Traditionally in the West, there were rigid barriers between doctor and patient or patient’s family. Timidity yielded to authority; anxiety bowed to formality; the white coat ruled. … we became a valuable part of the team delivering the very best care to a young patient fighting for his life.
Emma (she/her)
“… it is enough to exist in the world and marvel at it. You don’t need to justify that, or earn it. You are allowed to just live. That is all most animals do.” ~ Becky Chambers, A Psalm for the Wild-Built
- Emma Jane Grey
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- Trauma victims and post-traumatic stress sufferers report the dominance of one fierce question: Is there nothing the world can do to give me peace?
- “It just amazes me how children do accept differences without judgment. I mean they really did treat him just like he was before.
Emma (she/her)
“… it is enough to exist in the world and marvel at it. You don’t need to justify that, or earn it. You are allowed to just live. That is all most animals do.” ~ Becky Chambers, A Psalm for the Wild-Built
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So I hope this would be more "the rule" instead of "the exception".
Still, there are times when this is just not possible, and health care professionals need to take a more directive attitude, so sometimes is quite a grey area.
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Yes, but people not always know which tools they should use for this. Google and Wikipedia are not right places to go for advice, and blogs are sometimes more dangerous than beneficial. People has to be pro active and at the same time know when and who to go for help.Shirley Ann Riddern Labzentis wrote: ↑14 Aug 2023, 16:26 If at all possible, patients need to be proactive in their own care. You need to stay on top of things and do as much research as possible. Unfortunately, some patients who are older or towards the end of their lives can't do that. Children need their parents to advocate for them as they don't understand what is happening.
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^^ YES!! I’ve always been so incredibly grateful to have good health professionals explain things to me properly and acknowledge my expertise in the field of my own body. For reference, I have Ehlers-Danlos Syndrome (along with POTS, Hypersomnia, Migraines, and mental health stuff) and it can have a hugely different presentation in different people so having my GP (or primary practitioner, I think you call them in the US?) actually listen to me and take what I’m saying seriously is a godsend. It can be really hard for people (especially non-men) to be taken seriously in the chronic illness and rare disorders space.Nqobile Mashinini Tshabalala wrote: ↑15 Aug 2023, 00:53 While I don't think it's deliberate, healthcare workers have a tendency of doing what they believe is best for the patient without discussing it with the patient.
Emma (she/her)
“… it is enough to exist in the world and marvel at it. You don’t need to justify that, or earn it. You are allowed to just live. That is all most animals do.” ~ Becky Chambers, A Psalm for the Wild-Built
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In my own opinion, patient advocacy is very much effective. It is a practice which most health professionals should look into and its positive outcome is evident in this book.Emma Grey wrote: ↑11 Aug 2023, 18:55 Patient advocacy was an important theme in this book and one that resonated with me as someone living with invisible chronic illnesses and disability. Some quotes that stood out to me are:
- Learning to stand up for oneself, learning to complain on one’s own behalf, even when justified in depth, is one of life’s most needed and most difficult skills. It requires emotional and verbal competence. Even confident people don't always do it well, especially if they have been living in a perpetual state of high anxiety and stress.
I’d love to hear other people’s thoughts about the patient advocacy themes in this book.
- Traditionally in the West, there were rigid barriers between doctor and patient or patient’s family. Timidity yielded to authority; anxiety bowed to formality; the white coat ruled. … we became a valuable part of the team delivering the very best care to a young patient fighting for his life.
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Oh absolutely! I was working as a support coordinator during major lockdowns in my city and trying to advocate remotely for participants I’d never been able to meet in person was a very strange experience at timesChristine Palmer wrote: ↑18 Aug 2023, 19:43 In the recent pandemic a lot of patient advocacy was lost due to restricted visitors. I have seen serious medical errors made with family members, that in ordinary times would have been caught by an accompanying family member. The most amusing and less serious one was the sign above a blind family member telling the staff that he was deaf. They tried to sign and were confused!
Emma (she/her)
“… it is enough to exist in the world and marvel at it. You don’t need to justify that, or earn it. You are allowed to just live. That is all most animals do.” ~ Becky Chambers, A Psalm for the Wild-Built
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I have a cousin who has cancer and one of my aunts, who is not his mother and who works in healthcare, has gotten very involved in his care and advocated for him throughout the time of his diagnosis and treatment. Her presence and advocacy have made a big difference and have helped my cousin to be more at ease in this challenging time in his life.
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I agree with you, it is not always evident which tools to use to get the needed information. Perhaps, rather than looking for answers online, we should go to that family doctor we have been seeing for ages and whom we are familiar with; even though they are not specialists, they are in the medical field. I find it easier to talk to the family doctor and to ask all the questions we might perceive as dumb.Carlos Mata Saenz wrote: ↑14 Aug 2023, 17:24Yes, but people not always know which tools they should use for this. Google and Wikipedia are not right places to go for advice, and blogs are sometimes more dangerous than beneficial. People has to be pro active and at the same time know when and who to go for help.Shirley Ann Riddern Labzentis wrote: ↑14 Aug 2023, 16:26 If at all possible, patients need to be proactive in their own care. You need to stay on top of things and do as much research as possible. Unfortunately, some patients who are older or towards the end of their lives can't do that. Children need their parents to advocate for them as they don't understand what is happening.