Patient advocacy

Use this forum to discuss the August 2023 Book of the Month, First Survivor: The Impossible Childhood Cancer Breakthrough by Mark Unger
User avatar
Yasmine Zaki Muhieddine
Book of the Month Participant
Posts: 723
Joined: 16 Feb 2022, 07:39
Favorite Book: Shanghai'd
Currently Reading: Anticipation Day
Bookshelf Size: 245
Reviewer Page: onlinebookclub.org/reviews/by-yasmine-zm.html
Latest Review: Shanghai'd by Curtis Stephen Burdick
2025 Reading Goal: 15
2025 Goal Completion: 40%

Re: Patient advocacy

Post by Yasmine Zaki Muhieddine »

Julie Basil wrote: 27 Aug 2023, 21:00 I think that advocating for yourself and getting involved in your own care are both very helpful when seeking medical help. Having another person with you like a parent, spouse, or close friend can also be helpful in situations when you aren't able to advocate for yourself for whatever reason. It can feel scary to bring up something that a medical professional doesn't seem to be considering, but if you don't ask or start the conversation, you'll never know.
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.
You are right, having another person with you when getting treatment is very important. I can recall a couple of times when I remember having a thirty minutes conversation with a doctor, but afterwards I couldn't remember the things we spoke about. When you are the sick person, your body is going through a lot, a your brain is too busy focusing on your body. Thinking clearly and taking decisions is not a priority for the brain at that time.
This also reminds me that we must make friends and strengthen family ties. It is not easy to do nowadays considering our lifestyles, but let's not live lonely lives.
User avatar
Meghan Soderholm
In It Together VIP
Posts: 497
Joined: 04 Oct 2022, 12:44
Favorite Book: The Smartest Person in the Room
Currently Reading: Yourself
Bookshelf Size: 10605
Reviewer Page: onlinebookclub.org/reviews/by-meghan-soderholm.html
Latest Review: A God-Balanced Life by James Puckett Sr.
Reading Device: B00KC6I06S

Post by Meghan Soderholm »

There needs to be more patient advocacy for the treatment aspect and the service aspect concerning money and insurance. There are still families out there that can't afford decent healthcare plans. Yes, governments have programs for these people, but there are still too many loose ends. I am blessed to have learned that the Unger family was resilient in confirming Louis' care and treatment and appreciated the journal entries in fighting for Louis' life.
“Yesterday is history, tomorrow is a mystery, but today is a gift and that is why we call it the present.” - Eleanor Roosevelt
User avatar
Gee-Q Mdluli
Book of the Month Participant
Posts: 130
Joined: 31 Aug 2023, 07:33
Currently Reading: Adventures of Uncle Billy and Ross
Bookshelf Size: 47
Reviewer Page: onlinebookclub.org/reviews/by-gee-q-mdluli.html
Latest Review: 30th Century: Escape (General Audience Edition) by Mark Kingston Levin PhD

Post by Gee-Q Mdluli »

I agree with you, and sometimes this approach lead to people being afraid of doctors and trying to solve health issues on their own. This delay is of course bad news so I'm really proud of Louis' parents for speaking up and being assertive about his healthcare.
User avatar
Adrian Rondon Salazar
Book of the Month Participant
Posts: 436
Joined: 17 Jun 2021, 15:16
Currently Reading:
Bookshelf Size: 49
Reviewer Page: onlinebookclub.org/reviews/by-adrian-rondon-salazar.html
Latest Review: Love and Marriage by Arthur Hartz

Post by Adrian Rondon Salazar »

It is a process; cooperation is vital but we must accept that sometimes it is allowed to be stubborn, not to cooperate. It is very difficult to know how to react in those situations; stress and symptoms don't make it easy. The support of family members and health personnel is important.
User avatar
Rishaunda Lynnette Britton
Book of the Month Participant
Posts: 237
Joined: 18 Aug 2023, 15:28
Currently Reading:
Bookshelf Size: 193
Reviewer Page: onlinebookclub.org/reviews/by-rishaunda-lynnette-britton.html
Latest Review: In It Together by Eckhart Aurelius Hughes

Post by Rishaunda Lynnette Britton »

Yeah, patient advocacy is one of the themes explored in this book, and I found it remarkably helpful. It's dad to hear about your health condition and I hope you will get well soonest. Please do take care of your self.
Zainab Wasif
In It Together VIP
Posts: 416
Joined: 24 Jun 2022, 06:49
Currently Reading:
Bookshelf Size: 79
Reviewer Page: onlinebookclub.org/reviews/by-zainab-wasif.html
Latest Review: Play Golf Better Faster: The Classic Guide to Optimizing Your Performance and Building Your Best Fast by Kalliope Barlis

Post by Zainab Wasif »

In my part of the world, doctors and medical professionals feel threatened if the patient researches his/her disease or there is an advocate for the patient to do that for him/her. They usually don't entertain many questions and tend to keep the patient's family's hopes to a minimum. I greatly respect medical professionals who educate their patients and guide them to choose the right course of action.
User avatar
Kaila Powell
Book of the Month Participant
Posts: 10
Joined: 12 Sep 2023, 09:51
Currently Reading:
Bookshelf Size: 3
Reviewer Page: onlinebookclub.org/reviews/by-kaila-powell.html
Latest Review: Relieved by Cheryl Richardson

Post by Kaila Powell »

Being in the medical field myself, the theme of patient advocacy is in every shift we work. Teaching patient family or friends about the importance of the topic is paramount because we have to remind the public that we are not robots, we don't know everything there is to know and we do make mistakes. In this book, the author gave the insight of the other side of the curtain. Drawing you into their family to experience the inner thoughts and emotions of how it feels facing the mountain that is the medical world and giving you a visual of how patient advocacy can mean walking the line of life and death.
Malthide Jones
Book of the Month Participant
Posts: 169
Joined: 06 Nov 2022, 23:22
Currently Reading:
Bookshelf Size: 38
Reviewer Page: onlinebookclub.org/reviews/by-malthide-jones.html
Latest Review: that was then by bob turner

Post by Malthide Jones »

Ehat my journey in the medical field has taught me is that thebfamily doctor should be prioritised. There's nothing as good as a doctor that is familiar with you.
FunkyFlowerLady
Book of the Month Participant
Posts: 783
Joined: 14 Apr 2022, 02:11
Favorite Book: Terms of Service
Currently Reading:
Bookshelf Size: 102
Reviewer Page: onlinebookclub.org/reviews/by-funkyflowerlady.html
Latest Review: Somawise by Luke Sniewski

Post by FunkyFlowerLady »

As a patient or as Lou's parents did, I also believe in speaking out for yourself. Although I don't believe it's on purpose, healthcare professionals often act in the patient's best interest without first consulting the patient. Although you may not understand much of the medical lingo as a patient, being aware of what is being done and why could make you feel more at peace. Your constant queries may upset medical professionals, but you need to know the answers as a patient and a person. The way Mark and Mary Ellen fought for their son was excellent.
User avatar
Chimezie Agbata
Book of the Month Participant
Posts: 223
Joined: 20 Oct 2022, 10:54
Currently Reading:
Bookshelf Size: 32
Reviewer Page: onlinebookclub.org/reviews/by-chimezie-agbata.html
Latest Review: VROOM! Barry, Kari and the Power Boost! by William G Wilberforce III

Post by Chimezie Agbata »

I so much buy into the concept of patient advocacy considering the flaws and errors in the healthcare system today. Patients and their loved once should stand up for themselves and detected what is necessary for their lives and the lives of their young ones.
User avatar
Kendal Low
Book of the Month Participant
Posts: 700
Joined: 15 Jun 2021, 03:03
Currently Reading: As Good As Dead
Bookshelf Size: 206
Reviewer Page: onlinebookclub.org/reviews/by-kendal-low.html
Latest Review: Stevie Tenderheart Books - Billy Jack (The Great Escape) by Steve William Laible

Post by Kendal Low »

Patient advocacy is such an important part of health care. Nobody can explain/understand what they’re feeling better than the patient themselves.
User avatar
Chigozie Anuli Mbadugha
Book of the Month Participant
Posts: 617
Joined: 29 Apr 2017, 05:44
Favorite Book: The Barnyard Buddies STOP for Peace
Currently Reading: When Leaves Fall
Bookshelf Size: 1590
Reviewer Page: onlinebookclub.org/reviews/by-chigozie-anuli-mbadugha.html
Latest Review: Breaking the Mold: Remodeling your Way to Success by Fabian Videla

Post by Chigozie Anuli Mbadugha »

It is so crucial for patients to be able to express themselves freely to their medical caregivers, but sometimes the pressure of work may make them less attentive. However, I encourage every patient who has something to say or clarify to keep speaking till they are heard.
Buikem Kasia
Book of the Month Participant
Posts: 38
Joined: 18 Sep 2023, 01:44
Currently Reading:
Bookshelf Size: 29
Reviewer Page: onlinebookclub.org/reviews/by-buikem-kasia.html
Latest Review: Twisted Threads by Kaylin McFarren

Post by Buikem Kasia »

This is a very important concept because the patient follows the treatment and it works better. Everyone should at least be educated about their problems.
Theresa Moffitt
In It Together VIP
Posts: 685
Joined: 18 Jun 2018, 22:27
Currently Reading:
Bookshelf Size: 300
Reviewer Page: onlinebookclub.org/reviews/by-theresa-moffitt.html
Latest Review: Keys to Harmony by Margalit Jakob

Post by Theresa Moffitt »

It’s difficult to be your own advocate when you are attempting to navigate foreign issues like medicine and medical treatments. If you don’t understand the terms or treatments, you don’t know the correct questions to ask etc.
Terrine Wild
Book of the Month Participant
Posts: 22
Joined: 26 Apr 2023, 02:25
Currently Reading:
Bookshelf Size: 18
Reviewer Page: onlinebookclub.org/reviews/by-lakaka.html
Latest Review: A Dream For Peace by Dr. Ghoulem Berrah

Post by Terrine Wild »

I just feel that every patient should be able to conduct research on what is wrong with them. They can better help the doctors and nurses this way.
Post Reply

Return to “Discuss "First Survivor: The Impossible Childhood Cancer Breakthrough" by Mark Unger”