Support for LateToSchool

<p>I think that no matter how sick, one cannot be afraid to confront, challenge, and demand answers, or, simply ask for help, and for what is needed. Yesterday, I was forced to embarrass the primary nurse, and force her to admit - right in front of her boss - that her boss was the one who ordered her to make the treatment plan change. But I didn’t even let her off the hook there - I demanded that she explain to me why she lied to me just moments before when she said that she didn’t know how the treatment plan came to be what it was. She stammered, turned red, looked horribly embarrassed, and had no choice but to hang herself in front of her boss. I am hopeful that my dialog with the CEO’s office this morning gets her out of trouble with her boss. </p>

<p>To this nurse’s enormous credit, once I had dragons slayed, the matter resolved, had the wrong people out of the room, and we were back to the matter of the CT scan, we then both easily switched our roles. I became for the moment the cancer patient that I am; she became my nurse. I said to her very openly, “I am afraid of this machine, of this whole procedure. I am afraid of the mask. I do not feel well. I am very sick. I am very worried about everything. I do not like being scanned and I am even afraid of how the contrast dye feels. Please stay with me. Please hold my hand. Please don’t leave me. Please talk me through this.” </p>

<p>And, to her great, great credit, she did; she talked me through literally every step of the procedure, including the mask situation, reassuring me verbally every step of the way that I was o.k., etc.,; she was physically beside me, touching me, talking me through it all, and when she could not be in the room during the scanning process she was talking me through it via the microphones. All this, in spite of the fact that I literally decimated her in front of her boss not even moments before. The message being, I think if patients ask for what they need, it most likely can be made to happen.</p>

<p>I admire your chutzpah and tenacity, LTS. Were you brought up that way? I wasn’t but I sure am raising my daughter to be assertive. Look how well its served you! I think of you often.</p>

<p>LTS, I agree with everything that you did and said. You just simply amaze me!</p>

<p>I have prayed for you to survive this ordeal just because that is what we want for those who are suffering, but now I am convinced you have a purpose once you conquer this terrible disease and it is to advocate for change in our mixed up health care system.
Wishing you a calmer few days as you actually undergo the cyberknife.</p>

<p>How can we make a book out of this thread for others who are not as fortunate as we to witness this woman’s bravery and incredible spirit?? I am sure it would be read by many and cherished and much would be learned (as we all can attest!).</p>

<p>I am so angry by this latest turn of events, yet moved literally to tears by LTS’ description of asking for the nurse’s help during her scan, and of this caregiver’s willingness to provide it in spite of the awful situation they had been in earlier. </p>

<p>I feel I am witnessing something, well, incredible.</p>

<p>Prayers with you as always, LTS!</p>

<p>LTS, Bravo!!</p>

<p>It is a tragedy that health care is increasingly run as a business enterprise, with medical decisions secondary to reimbursement. That said, there is no excuse for substituting an agreed procedure without consent from the patient, especially that most patients would have signed on the dotted line without realizing the change.</p>

<p>I hope that you have taught them a lesson.</p>

<p>LTS,
You are already changing the way health care is provided – just by sharing your stories here. There are enough attorneys, health care providers, people in the helping professions, caregivers and patients just reading this thread – how can we NOT be changed, angered, and motivated by your experience?</p>

<p>Three grand right now or we’ll nuke your brain. That is beyond appalling. I am glad the nurse stayed with you – your description of her service to you during the actual test made me cry, too. It just blows me away that you had the strength to confront these bureaucrats and hold them accountable during this incredibly tough time.</p>

<p>You are a force of nature, dear woman. :)</p>

<p>A force of nature, indeed! </p>

<p>I imagine that the hospital personnel were pressured to do the right thing, i.e., what LTS was demanding, in part by the fact that the very valuable CT room was being held hostage to the negotiations! Throughput is everything. A good point to remember - do not vacate the expensive real estate!</p>

<p>Congratulations on your tenacity and courage!</p>

<p>Wow, latetoschool, you are a courageous woman! Bravo! I could not believe my eyes when I was reading your story of your “bait and switch” medical procedure ordeal. Shocking… I feel so sorry for the patients who are too sick or not so well informed to question everything and who fell victims to the similar switches.</p>

<p>LTS, I too admire your tenacity and outspokenness.</p>

<p>My children refer to me as the consumer from hell. They have abbreviated this to the CFH and they know when the CFH shows up, things happen. </p>

<p>I too have wondered how people without a lot of education, money or confidence manage the medical system. I think they don’t. However, the collective stories of the CFH-ers who have fought the medical bureaucracy can inspire them to try. When I hired lawyers to fight the insurance company on the behalf of my son, we eventually won (probably wore them down!). We passed along the materials along to the craniofacial team to use with other families. So the stories do matter.</p>

<p>Hang in there CFH LTS. As my kids would say, they picked the wrong woman this time!</p>

<p>“I resolved it in short order;”</p>

<p>I wish that was on video. I’m picturing a “how-to” video for people to help them become empowered in dealing with health care professionals. Yesterday, my daughter’s doctor’s office in CT faxed an order for blood work to a lab in CA where she is home for spring break. She’s often done her medical tests here while home because she’s less busy. When she got there, they refused to do the work because her driver’s license is from CA and not CT. Something to do with residency. My dd said she was registered to vote in CT and can be considered a resident there but the woman refused. My dd asked her several times to articulate what the policy actually was and she could not. DD pointed out that other labs had no problem filling the order in the past which indicates it’s not a problem but this woman was adamant about enforcing a policy she could not actually explain. I wonder if they have come out with a “Navigating the Health Care system for Dummies” book yet. If not, it’s begging to be written and should be placed in the hands of every patient as soon as they receive a diagnosis that will require lots of medical care. Good for you for going to the top and for “resolving it in short order.” Well done.</p>

<p>Wow! I’m speechless, LTS. You’re amazing.</p>

<p>LTS–I told the story to my H (exDoc) over dinner, and he said “that’s malpractice.” Just threaten a lawsuit, or maybe you did…</p>

<p>Your two stories, the one telling the outrage, the other about you and the nurse getting you through the procedure, are heart-stoppingly inspiring.</p>

<p>“Patient Advocate and Leader: Winthrop (Win) M. Hodges”</p>

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<p>[Institute</a> for Family-Centered Care - Advancing the Practice - Patient Advocate and Leader - Winthrop M. Hodges](<a href=“http://www.familycenteredcare.org/advance/pafam-pal_win.html]Institute”>http://www.familycenteredcare.org/advance/pafam-pal_win.html)</p>

<p>(P.S. to LTS: I think there might be a place for you in the courtroom if you ever get tired of your current gig.)</p>

<p>LTS - I am a newcomer to CC and wish you all the best in the world. Don’t come down too hard on the CT support staff. As a former technologist I know that you could have a horn growing out of the middle of your forehead and the most we were allowed to say was “Your doctor will be calling you with the results of your test in a few days”. The health field (on that level) does not operate like the world of business. You are not rewarded for calling a spade a spade. You would most likely be reprimanded. I agree that changes need to be made - but that part will not change.</p>

<p>LTS, when I read your post I thought of the song “Now You’re Messing With a Sonofab****!” NOT that you ARE an SOB … but that doctor certainly messed with the wrong woman. Good for you!!</p>

<p>I am so glad you were able to get the treatment you desired. The only thing that makes me sadder than the fact that many would not have been as assertive as you … is the fact that many more will find assertive is not enough when insurance (or lack of it) gets in the way. Unfortunately, if we were to institute a national health care system, it might even get worse (the less expensive option, regardless of what is “best” for the patient, would probably be the only choice … although the most powerful/richest will always be able to buy what they want). I wish I knew how to fix health care so it’s fair for all. </p>

<p>In the meantime, I wish I was half as self confident as you!</p>

<p>LTS, your strength, persistence and ability to acknowledge your human vulnerability are breathtaking. I have not posted before, but have followed some of your journey here. Your ability to advocate for yourself is commendable, and unfortunately, an advocate is often necessary. Cancer has impacted many in my immediate family and I have walked this walk beside several close friends as well. I share your sense that those of us who are able speak up must, not only for ourselves, but for those who can’t do it for one reason or another. Although you are probably aware of this, most hospitals have a Quality Assurance Department. Some are immediately evident on the hospital’s website, some are (deliberately?) obscure. I found my way to the one QA Dept. that I wanted to contact through the back door of job listings at the hospital and pointed out that it should be made obvious to patients and families how to reach them. If you write a letter documenting the nature of your problems and the departments involved, they are obliged to look into each complaint. They will then contact you with general information. In our case, 5 departments were involved and procedures were changed. It felt good to make a difference for the next person. They are accountable for these investigations. The CEO can’t hurt either, but QA leaves a paper trail that may be relevant to patients in the future. It’s a lot of energy to channel at a very draining time. It should lead to a greater quality of care for all. Ironically, by speaking up at the CT, you cut through the bureaucracy and humanized the care. Your vitality, wisdom and grace under pressure have taught me a lot. Imagine how unlikely that team is to try this approach with another patient. Especially because they now see you as a person, as opposed to “just” a vigilant patient. Worth a lot of continuing education credits to spend time with you! Know that many are with you as you navigate these complexities.</p>

<p>Echoing Garland, here… I think you need to add a malpractice attorney to your treatment team. Or at least do some research (we’ll help!) – to get the names of some major plaintiff’s firms that would be well known to the hospital… so you can at least drop the right name at the right time. Maybe file a medical release form with the high-powered law firm’s letterhead … kind of, “oh, by the way, I wanted to make sure that it’s clear that my attorneys are authorized to have full access to my records at any time.” </p>

<p>I think you did a great job advocating for yourself … but sometimes simply mentioning the word “lawyer” at the appropriate place in the conversation just helps the other side see reason even faster.</p>

<p>“Lung cancer etiquette: Thanks for not asking if I smoked”</p>

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<p>[Health:</a> Lung cancer etiquette: Thanks for not asking if I smoked - US News and World Report](<a href=“http://health.usnews.com/usnews/health/articles/060308/8lung.htm]Health:”>http://health.usnews.com/usnews/health/articles/060308/8lung.htm)</p>