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How to Deal with Medical Professionals (Effectively)


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tips from Anne -  What to bring with you
what to bring with you - I bring this...

MRS ANNE JENNIFER PLEDGER

D.O.B. 16/7/XX

MEDICAL HISTORY

  • The bearer has SHY-DRAGER SYNDROME -  (PAF), a disease of the autonomic central nervous system. Can under no circumstances be subjected to any magnetic field inc MRI.
  • Main symptom - Severe postural hypotension. If Bearer faints- Lie flat, raise legs, no medication. 
  • See attached information about Shy-Drager Syndrome and PAF (Pure Autonomic Failure)
  • Contracted Rheumatic Fever 1960. Antibiotics must be given BEFORE any invasive procedures/surgery/dentistry/tests.
  • Gastric Pacemaker must be switched off by hand held device (in handbag) for procedures, surgery and scans. Scans etc. must not be taken over area of pacemaker.
  • Has Nocturnal Epilepsy. In case of nocturnal attack administer extra 4 Rivotril. Contact: Mr A. Pledger Home 07 55328619,
  • Mobile 0403 508062
  • Medic Alert bracelet worn on wrist. Emergency telephone number for medical history is engraved on the back.


MEDICAL PRACTITIONERS
 

Dr. Phillip Myer G.P . (07) 55394055
Dr. Paul Dinnen Vascular Surgeon (07) 55971877
Dr. James Clark Shy - Dragor Specialist (07) 55395566
Dr. Lloyd Dorrington Gastroenterologist (07) 55914455
Dr. Philip McDougall Urologist (07) 55323766
Dr. Matthew Scott-Young Orthopaedic Surgeon (07) 55286477
Dr. Bryan Farage Cardiologist (07) 55396716
Dr. John Corbett Neurologist (07) 55311699
Dr. John Kearney Eye Specialist (07) 55329099
Dr Robin Rowley Anaesthetist (07) 55323667
Dr Greg Falk Fitted Gastric Pacemaker (02) 97457444


MEDICATIONS

  • Premarin 625mcg 1 tablet at night
  • Rivotril 500mcg 1 tablet 3 times daily with meals, 4 tablets at night
  • Dymadon 500mg 1 tablets four times a day 
  • Biquinate 300mg 1 tablet at night
  • Endone 5mg 2 tablets 3 times daily 


ALLERGIES

  • Scholine (Life support req.) 
  • Amitriptyline (Convulsions)
  • Aspirin 
  • Trimethoprim
  • Morphine (Severe vomiting) All Sulpha based Drugs 
  • All Stimulating Drugs i.e. Urecholine Phiseptone 
  • Xylocaine (Aerosol) (Throat swells) 
  • Tylenol
  • Ephedrine (Stimulant) 
  • Anginine (Severe Headaches)


OPERATIONS
 

Appendectomy 1957                                            Multi Organ Failure = Kidney/Liver/Lung failure 1989
Manchester Repair X 7 1967                                 Femoral Extension Bypass   Sept 1991 
Hysterectomy 1968                                              Angioplasty June 1993
Ulna Nerve Repositioning 1976                              Femoral Extension Bypass April 1994 
Gall Bladder Removal 1978                                   Laminectomy  Sept 1994 
Angioplasty (damaged arteries) 1984                    Carpel Tunnel Release  Nov 1995
FemoralBypass 1984                                           Laminectomy  July  1998 
Iliac Bypass  1984                                               Laminectomy   Aug 1998
Coeliac Patch/S.M.A Bypass 1989                       L4/5 Spinal Fusion  Aug 1999
                `                                                         GASTRIC Pace Maker Implant Dec 2001
  • GASTRIC Pace Maker implanted at Strathfield Private Hospital Sydney  by Dr Greg Falk -Hospital Medical File No 78240
  • Pindara Private Hospital - Hospital  Medical File No 7368
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From the school of hard knocks - how to find a GOODdoctor
Before you meet the doctor:
  • if you live somewhere there is a shortage of general practitioners,  try getting a list of recent med school graduates, they are most likely to be accepting new patients, and are up to date (assuming the med school was)
  • the receptionist is a good indicator of the doctor, does he/she 
    • seem happy to work there? 
    • treat you with respect? 
    • friendly? 
    • appears bright?
  • is the waiting room
    • soothing?
    • supply magazines that cater to all kinds of people, not just golfers and fashion (personal thing, but the selection should give you something in common, for me the wider the choice the more open-minded the doctor)?
    • magazines are up to date (I like when the doctor think enough of his patient to update the reading material)?
    • most surroundings give away something of the owner's personality, horsey people display horsey art, humourous cartoons, good artwork, bad artwork, if you can relate to the decor you can probably relate to the doctor
    • if the furniture is comfortable, snooty or stark reflects the same way
  • how much information if any was asked from you before you see the doctor, (the more detailed the questionnaire, the more concerned with detail the doctor)?
  • does the staff wear lab coats?  While it is no doubt policy in institutional settings, in private offices this is the doctor's preference, personally the more casual the better, (I have a personal distaste for formality when I'm going to be asked to disrobe, and I freak out a bit when confronted with lab coats)
    • body language, how relaxed is the receptionist, other patients, is there spontaneous conversation which is pleasant and relaxed (if they are terrified to see the doctor, chances are I won't like him/her)?


    meeting the doctor

  • does he look like he could be a friend (obviously a hypothetical, but if you could not possibly feel he could be a friend, you're going to not relay your feelings to him/her very well)?
    • is he wearing a lab coat, more formal or too casual for your liking?
    • does he greet you with eye contact?
    • take a look around in the doctor's office
    • does he have a lot of medical literature around?
  • does the literature look well used or is it more of a decorative statement? (I like to see a doctor with worn medical journals and books that have obviously been used a lot)
    • how current are the books and magazines?
  • does he/she respect your physical boundaries or does he intrude before you have a level of comfort?
  • is he/she interested in how comfortable you are, does he/she notice you are anxious, frightened, intimidated etc.
  • I go in with questions written down, some doctors to exception to it, those doctors were not worth a second visit, I like to be a participant in my medical treatment
    • does the doctor speak directly to you in a non patronizing way - opposed being patronizing and preferring to answer your spouse as though you were not in the room - not worth a second visit
    • is the doctor Internet friendly?
    • is the doctor willing to listen to what you've found out and discuss merits, pros and cons with you?
    • what are the doctors views on pain management (should be the same as yours)
    • if the doctor has no previous experience with your illness, is he/she at least interested to learn more?
  • is the doctor taking a complete, detailed history, or only interested in the current symptom that brought you in to see the doctor?
  • does the doctor make a follow-up appointment to get to know you better?
  • some doctors are opposed to and suspicious of patients shopping around for a doctor - it is wise not to publicize it, that said, you should think of it as an employment interview, where you are the employer and the doctor is the candidate, if any of these things raise doubt, keep interviewing, don't commit to further appointments unless you are absolutely sure, until you decide to continue with a doctor there is nothing to compel you to sign over your file - this avoids the paper trail of your shopping around
  • be honest, that you are looking for a doctor but you need one you feel absolutely comfortable with - you do have that right in most countries and under most insurance plans
  • if you find a good GP he is more likely to refer you to doctors much like himslef/herself, and let him/her know what makes you comfortable or uncomfortable - that will help both of you, respect has to be reciprocal
  • once you find the doctor you are comfortable with, stick it out - be understanding that even physicians have truly lousy days, just as he/she may not know what horrible things have recently happened in your life, you don't know what happened in his/her life either
  • always bee nice to the receptionist(s) they often have more influence than you think
  • my personal preference is for doctors who like me to write things down, because I am freaked out just generally by doctors and suffer from office visit amnesia, I fax it 24 hours ahead of my visit - beats wasting both our times forgetting what I was doing there in the first place
  • bringing a written medical history (Anne's example above) is an excellent idea, and most doctors (not all) will appreciate it, especially as we present them with illnesses they have rarely if ever had experience with
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aletta - if you think you have something to add, feel free to contribute
note: it took me several years to find one GP to whom I could relate and I finally started moving foward a bit in treatment, it was worth the agonies, to get to tis point, don't give up, as I so often wanted to, if you need a kick in the butt to keep going, email mee I send you one, I'm glad I had family and friends to keep me going, now if I could just find a decent medical plan
aletta

seems pointlesssometimes seeing specialists who don't know, what's worse are the ones who will not admit they don't know, just want to test things out.  It's personal to you what worth pursuing and what not.  After many years I've finally got a GP willing to discuss the real value to me of tests, meds and specialists.  With limited time I'd rather not be wasting it. 

"Physicians of the utmost fame 
Were called at once, but when they came 
They answered as they took their fees, 
There is no cure for this disease" 
  Hillaire Belloc (1870-1953)
Criteria to be my doctor:
  • see me as a person not a case
  • don't belittle my capacity to understand what is being said
  • don't humour me, be forthright, I will do the same
  • inform me completely about all options and their value, and then let me me make the decision
  • be willing to go to bat for me when I need someone to speak to a social worker or therapist
  • be willing to consult with my psychiatrist on all matters involving my mental status
  • understand what my economic reality is
  • keep me functioning and independent above all else
check out my painscale
emergencies!
what you should have with you
  • emergency contact numbers (mine are in a notebook in my purse clearly marked with: in case of emergency call_____ 
  • in the same notebook I have the basics:
  • if found please know that I have_______ (in my case Shy-Drager)
  • please do not lie completely flat, autonomic functions are not normal with this illness
  • please contact Dr_____, also list if you have a preference for which emergency they should take you to
  • have a list handy of all medications you take and when they should be given
  • have a list of all implants and devices
  • list all allergies
  • insurance information
  • wear a medic-alert bracelet or chain, this gives emergency personnel access to your medical information (don't buy the ones without toll free support)


when to call for help

  • according to various medical people I have asked what I should consider an emergency (I hate going, and ending up feeling as though I wasted their time, so I hedge a lot) - when you become afraid and fear you might die - period!
  • if you are freaking out the family - consider they might be right, and consent to do it for them (as reluctantly as you like)
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Mike the Koala on docs
Men do get the run around as well, at least in my personal experience. About being functional: would it be possible that people who fight their symptoms to maintain some quality of life are more readily dismissed than someone who accepts what is happening to them? 

Before anyone gets offended, what I am trying to say is that if you are lsomeone who continues to do stretches and maintain independent living does that mean you can't meet their (medical professionals, social workers etc.) criteria for these illnesses? As opposed to someone who loses their movement by not fighting symptoms such as cramps. Their presentation to the doctor would seem logically to be more in line with what the doctor may expect to see, eg spasticity.

As another example, sitting here typing my muscles are aching, but I refuse to stop. So when I go to see the new neuro on Friday, if he asks me to do something and I force myself even if I feel pain, he may consider that I am not presenting particular symptoms. Just a thought.
 

Regards Michael
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Hi, I'm afraid I went for a long time before they took me seriously and I wasn't a female at the time.  I think a lot of us have common problems, whether male or female.  Don't forget a lot of males also have learned frustration and suffered from ignorance in the medical profession and other places as well.  There has been a percentage of arrogant egotistical males in the community, but I have noticed there are a number of females there as well nowadays. We are all humans together and lets face it, the ones who didn't respect women, probably didn't respect anybody or anything else either, just the same as some of the women who are at the top now respect nobody or nothing, regardless of gender

from Bill. 
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