July 1, 2012 at 6:52 pm #2507
It’s incredible, the way we are all treated (or mis-treated, as the case really is). I just don’t get it because it’s not just one country that is mistreating us, it’s happening in the USA, UK, Australia, to name but a few. It makes you wonder if there is more to this than meets the eye.
For those of you in the USA, I know that the way your system works has led many people with complex debilitating conditions to not receive the treatment they need, has this changed with the new health laws that President Obama has just been successful with ? I thought it sounded like a good thing, am I wrong ?
Here in the UK I’m hoping we see changes now that European is intervening. They have told the NHS to sort out their National Health Service ‘inequalities’ – I’m hoping that means us!!
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 1, 2012 at 6:57 pm #2508
I’ve often wondered if I have a law suit with my “ex-doctor” that treated me like a hypochondriac for nearly 20 years. In that situation, that I described above – with the internist – I requested a copy of the letter he sent to my doctor. He said to get it from my doctor and my doctor said to get it from him. Neither one of them would give me a copy. Isn’t that illegal?
My advice here would be not to approach the doctor but to write to the medical records department of the Hospital or Surgery concerned, asking for copies. I don’t know about the USA but in the UK they are obliged to send you these, although there may be a charge.
Hope this helps.
(UK)July 3, 2012 at 12:25 am #2524Give My Daughter the Shot!Participant
Heck, I walked in on the hospital administrator changing my records after I called and confronted her on the negligence of the lab staff making the executive decision to not send away a second specimen for species identification. You have no idea the trouble I went to in getting the second culture taken – after I had to force them to culture the first time. They found curvularia in a non-healing wound a few years ago. For those not familiar, it’s a black mould. If you look it up, you’ll find case studies of a couple of people living for a few days or a week while their brains were eaten away in the hospital. It’s treated with antifungals or at least that’s the least invasive. Once Rx for me, my growing wound did end up healing. Anyway…. You have no idea how weird it was walking in on her changing my records. I’d gotten a copy the Friday before and had the revised version in my hand now that it was Monday. The exchange was unbelievable, literally unbelievable! “Is this what you do when someone has a concern about your hospital”, I said. She said, “Are you saying that there’s something fishy” and I told her that, “I didn’t say that, you did”. Are you kidding! My gosh was my heart racing! Then I said, “I’ll just take these copies and put them with the ones that I picked up on Friday”, “Thank you”, and left. That fool didn’t even know what she was trying to accomplish (by the look of the changes she was making). I felt suspicious when she kept trying to debrief me, then telling me not to worry about it. Then who did you talk to, what did they say, when was that. I knew she was doing something shady so I rushed to the hospital to re-collect my records. She was very surprised to see me. So creepy!
ANYWAY, IT WOULD ALMOST BE NICE TO HAVE SOME SORT OF CLASS ACTION SUIT. NO, NOT BECAUSE WE ARE GREEDY MONEY LOVERS BUT TO RAISE AWARENESS! Seriously! SERIOUSLY! Everyone seems to have some pretty profound issues with being malpracticed, abused, treated negligently. I know it’s probably not appropriate talk and am not a big fan of attorneys. I’m in a position that I have to trailblaze some standards for my affected children. I’m so far behind the 8-ball of being treated like a human being. I don’t mind a doctor not knowing (at least they’re honest) or even not wanting to be bothered with something so complex (I sorta don’t blame them). The problem is that they use trickery and abuse tactics to mask their lack of knowledge. I saw somewhere that one of the worst things a doctor can do to someone with EDS (or similar) is to treat them like it’s all in their head – that does damage!
Hi Barbara, Obamacare will doom us to far worse care than we can imagine. It will take away any incentive for doctors to excel or perform at or above standards. Many US doctors are in private practice (I am now stuck in a clinic). Yes, it is true that better insurance generally affords better care. Is it fair, probably not. BUT without better insurance there would exist little or no ‘better care’. Here’s why. The private practice doctors are working hard to build their practices and if they don’t take proper and respectful care of patients, the patients have the option to go elsewhere. I used to manage dental and surgical offices. When a doctor starts their practice, they sign up with insurances as a participating provider and agree to the fee schedule imposed by that particular insurance company (whatever the gap between their fee for service IE: an office visit is $100 and the allowable amount that they’ve agreed to accept from that particular insurance company
the office has to write off the difference between the two amounts). This is acceptable to the start up doctor because it is in exchange for patient referrals (which will build the practice and give the doctor a chance to market himself with new patients and prove himself competent and worthy of their trust) from the insurance company aka he becomes a participating provider with insurance company and the insured can choose him from their preferred provider list. Marketing. As the practice of a good and competent doctor grows, it will begin to drop the insurance companies that require the largest write offs and maintain contracted participation with the insurance companies that pay more or have a higher allowable fee schedule. Sometimes, they work their way up to where they are so in demand by their patients that they become fee for service and the patients pay in full upon visit and file their own paperwork for personal reimbursement by their insurance company. This would be a doctor like Dr. Paul Cheney, I assume. Until my condition financially broke me, I paid richly for specialized care for the outrageous things that were happening to me – in the name of ‘getting it right the first time’. Obamacare gives no incentive for doctors to excel. Add medmal reform and we are in so much trouble! The future of medical care is further at risk because nobody in their right mind would go to the trouble of medical school and contend with the limitations that the new healthcare regulations would impose onto them. Independent doctors offices will not be operational as too many staff will be required to be government compliant. Also, US doctors require so much schooling and are levied with so many standards that doctors who receive degree in other countries don’t have to meet. US bred doctors have to be able to earn $ at a certain level to justify the expense and investment of their schooling alone whereas this is not the case with migrant doctors. Basically, the new healthcare removes democracy from the healthcare system. I think our doctors already have it hard enough, by far. Our care will suffer greatly! I’m positive of it! Example: http://thechart.blogs.cnn.com/2012/05/28/what-is-elhers-danlos-syndrome/?iref=allsearch , the article written about EDS and the doc who wrote it. No incentive.July 3, 2012 at 9:31 am #2525Give My Daughter the Shot!Participant
I thought of another thing. Over 20 years ago, I had a good PA (or NP) tell me to listen to my body and that my body was smart. That has stuck with me over the years in a big way. I was very confused by what I was asking her about (at the time) and couldn’t understand why I was starving to death while breastfeeding – MORE voraciously hungry than the final weeks of pregnancy?? Didn’t make sense and I wondered what the deal was. I was shocked when she told me that it takes so much work for the human body to manufacture breastmilk. She said that there are also body signals involved in true cravings (not just an excuse to gorge and calling it a craving). She said that pain meant something too and that ‘your body is trying to tell you something’. I’ve never forgotten what she told me and always honored her words and followed that philosophy of listening to my body. Harmony, synchronicity, and a sense of well being were the result that I always felt that I’d achieved in doing this. Rebecca was her name and she was awesome!
Fast forward to now…. What a far cry! Over these past years I’ve had to be mentally forcible with an unacceptably and senselessly uncooperative body in an attempt to complete the most basic of tasks. QUITE A FEW OF WHICH, INCLUDING LEANING, BRING ON A PLETHORA OF, IMMEDIATE AND DREADFUL, DISABLING SYMPTOMS. Could NOT make ANY sense of what my body was doing or refusing to do! WHEN I BEGGED FOR MEDICAL HELP, THE DOCTORS PATHOLOGIZED ME IN A VAST MULTITUDE OF CRUEL WAYS! This perpetuated my dischord with my body and may have even been the start of my conflict between my mental will (which is/was/always has been very strong) and my physical deficiencies/disobedience of my own will. Over the years of doctor’s humiliating, gaslighting, doubting, blatantly disbelieving, rolling eyes at, challenging me – and I’m sure more. Refusing diagnostics, refusing referrals, refusing help, etc. ANYHOW, THE PAST YEAR OR TWO I’VE BEEN IN DESPAIR AND SAYING THAT I CAN NO LONGER LISTEN TO MY BODY. True enough, my brain and body are WAY outa sync. I am just now realizing though… one of the main reasons that I cannot listen to my body is because THERE IS NO POINT TO EVEN PAYING ATTENTION – NO DOCTOR WILL LISTEN TO ME! Why would I listen to my body, go for medical help and endure the ensuing abuse by admitting to the multitude of impossible symptoms that I am sure to be mistreated for speaking of. IT’S NOT ALL MY FAULT HERE – THE DOCTORS AREN’T FOSTERING AN ATMOSPHERE WHERE I AM ABLE TO BE ATTENTIVE TO MY BODY! I’d better ‘shut up about it’ lest they get the social worker, “Sit right here while I get the social worker” after making me wait for over 3 hours (my last MD disappeared and this was an unexpected replacement that I found out about when I got there) to find my records (while I had a copy of with me). Yeah, I needed something – to get the heck outa there – 3 hours is too much for me even if it is just sitting there.
I’m stuck blindly researching like a maniac for all of these horrible and alarming symptoms and diagnoses that I experience daily – then I have nobody to tell (for the most part). It’s hurting me a LOT to be without a doctor of my own who wants my best interest and to nurture my health. I’ve always taken very good care of myself, medically among other ways. I’ve always had a lot of value for humanity (myself included) and always thought that this was just an expected human trait. I know now that not all people are the same and not all people are well-meaning. It’s tough to even distinguish the character of many in the medical field when so much is so far askew and causing so many problems. I can’t figure out who to even try to teach versus who to avoid altogether because I am under so much duress with regards to my health.
Just an epiphany, basically, that the primary reason I cannot listen to my body is that doctors act as though I’m a liar (or WORSE) when I convey the info. Secondarily, I am frustrated by my own lack of function. I actually NEED to conserve scraps of energy and this internal ‘battle’ does not help. I know I need to accept and sync – as discouraging as it is to lower my physical expectations of myself to the necessary level. Fighting, forcing, deluding, trying to act like it’s no big deal, spending days failing at trying to think about something else – just isn’t working, never has. I’m going to relay this info in counseling where the importance of my acceptance of my health is being explained to me over and over again. It’s not so much me that is non-compliant. Just sayin…
I need help and a medically inclined brain to participate in my comprehending, problem solving, and maintaining with regards to my health. I need to figure out which body system is the worst offender and try to salvage what I can. I know this stuff fits together, it’s just a puzzle with itty bitty icky pieces
What about ‘First, do no harm’ – isn’t that a staple in the medical community. I just had an idea, while I’m not a big ‘attorney type of girl’, we do have a family lawyer. I wonder, if I could have a brief (like that’s possible) letter of explanation regarding my condition drafted and request my doctor’s participation in slowing the degeneration process. IS THAT WEIRD??? Stupid idea??? Could we all, attorney or no attorney, have a statement that puts the doctor in a position of some fragment of liability for our care and proper treatment of us??? Again, I do have a heart and if the doctor isn’t interested in something complex, they could have the information/opportunity to turn us/me away versus allowing me to attend useless appointments and treating me like crap?! I know I’m a valuable human being and I’m so sick of having to struggle to recover my self esteem after attending a medical appointment. It’s taking longer and longer to upright myself after a ‘bad appointment’. Meanwhile, I’m feeling worse and worse physically too.July 3, 2012 at 8:34 pm #2532
Hi Give My Daughter the Shot!
You say “. . . . I wonder, if I could have a brief (like that’s possible) letter of explanation regarding my condition drafted and request my doctor’s participation in slowing the degeneration process. IS THAT WEIRD??? Stupid idea??? Could we all, attorney or no attorney, have a statement that puts the doctor in a position of some fragment of liability for our care and proper treatment of us???”
I think this is an excellent idea. I believe Dr Diana is working on a ‘list of symptoms’ as we speak, maybe this can be the basis of such a statement ?
(UK)December 25, 2012 at 10:35 pm #3245SunshineParticipant
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