I'm also fairly 'with it' as it has been said at one doctor's office.  If I am experiencing all of these issues when I can give decent information, how are others who have memory issues supposed to deal with a system that is this broken?

I think that the more complex an issue, the more apt there is to be a screw-up. 

It's happened to me - about four years ago my doctor retired and a nice young woman took his place.  That was about the time I was starting to develop symtoms with my Parkinsons which we discussed at my initial visit, along with my need for a B12 shot monthly, and various things in my medical history, including crohns.  At some point I mentioned that I was supposed to have a colonscope exam every two years, and she made a referral.  I waited, and waited, and waited.  This fall I began having some problems.  I called the specialists office - and was in to see him within a week.  Somehow my new family doctor had neglected to mention that I had crohns - and my file was at the bottom of a pile marked 'routine - when time permits'.   My family doctor does take excellent care of my Parkinsons.

My daughter also sees multiple doctors for cancer followup, crohns, routine family medicine, and surgeons for breast cancer, bowel resection and gynocology.  She has to keep on top of things herself.

Chemgal - you seem to have very complex health problems.  You will probably have to be diligent in keeping track of doctors, referrals, tests, medications, etc.  That's just the way it is.

Poor you Chemgal!  :(

Thanks guys,

Seeler, I don't think this is related to complex issues, other than one person might experience 1 mistake, but because of how often I go for things and the number of doctors I have it's been multiple times.  The overall frequency of mistakes lately has been high though, and the frustration does remind me of the other times too, when they were probably more average per number of visits.

The lack of compassion from those on the phones doesn't help.  I'm also dealing with all these people with my voice coming and going.  They treat me like it's my fault for not double checking everything when it's out of my hands.  I don't get to see referral letters before they go out and I don't have a list of all the clinics.

Luckily I did get someone very helpful yesterday.  It would have been nice if someone would have actually given me her phone number with the list I went through on Thursday though.  Somehow, with the message to call me back she didn't get my number and what was on the system she pulled up was my parents'.  When I called the provincial health systems they say that have my current info on file and it must be ____ I have to call, but when I follow through, they also have my current info on file.  Somehow though, my parents get my health info.

The helpful person is mailing more stuff for me to get tests - the lab I went to twice to double check isn't a lab that they trust.  Hopefully now I can get what I need and get in once before Christmas and sometime after.  Repeating the same test 4x before I even see the specialist and no one is able to really discuss the results in terms of other normal/not normal until I get there.

So frustrating.  The 'Care' part of Healthcare seems to have completely died.

It took me four years to get some scheduled, necessary surgery done.  I kept meeting other people who were diagnosed after me and yet had their surgery before me.  Grrrr.

It took 8 months to get the results of a possibly crucial CT scan.  It seems totally weird to be scheduled quickly for these things but take so long to get feedback.  What if it HAD been a rapidly growing tumor?

One of my grands spent an entire summer with a misdiagnosed broken leg - they said it wan't broken but it was! 

Good luck to you as you make your way through this nonsensical system.

Thanks Kay, misery loves company :)

Seriously though, at this age, it seems like most peers don't even need to go to the doctor or they go, maybe a test is done, they get a result, they get a treatment and then they are healthy again.

When it comes to specialists I'm surrounded by seniors.

Thirty years ago I woke up in the middle of the night, fainted on the bathroom floor, and came to realizing that something was horribly wrong.  I was too weak to get dressed, even with Seelerman's help.  He called an ambulance.  In the ER I was seen by a doctor who quickly diagnosed the 'flu and told me to go home.

Fortunately before Seelerman arrived, the day shift came on duty and a different doctor came into the room where I lay on a stretcher in a cold sweat.  I grabbed her hand and begged her 'Don't send me home.  I'm too sick to go home.'   She looked at my chart with my vitals and told me 'I wouldn't dream of sending you home like this.'  Before long I was having an emergency operation for a burst and hemoraging falopian tube - a tubal pregnancy.  If I'd gone home, crawled into bed and tried to suffer it out I probably would have died.

I learned later that this same doctor had misdiagnosed several others - including deciding that a broken leg was simply sprained, and refusing to check a sick child because it was crying.    Someone has to graduate at the bottom of the class.

...and poor chemgal has been getting all the "D"s recently...

I am lucky that way actually.  Most of my doctors are great, there is one I question at times, but some of his advice has helped too.  My issues are more to do with the receptionists and whatever is going wrong at the provincial level.

My father's eye care doctor needs to retire.  He is sloppy and no longer current in his care.  I have not written to the college of physicians and surgeons as I am not the patient, and to be fair it is possible my dad misunderstood ...

my dad's cardio guy just was too focussed on dollars and not enough on care, but, probably is good

the reality is, in all fields there are good & bad.  an educted consumer is called for.

What are the chances that I will get the form in the mail today so that I can get testing done before Christmas like I'm supposed to?

I agree, but there's only so much one can do.  If most doctors aren't aware that I should go to a certain lab because most give non-trustworthy results, how should I know that?

Chemgal, why do they have to mail you forms to get stuff done.  Is it not possible for you to either pick up the form or for you to have it emailed to you as a PDF and then print it.

I've never had anything emailed to me in the health system.  I don't think most of the province is on the broad internet.  I'm not actually a patient there yet, so that's why they are mailing it.  The clinic is also closed for Christmas now.

The mail is here, but no test form.  I called my GPs office, we'll see if I can actually get this done on time.

So I was told to call at 9am today.  The automatic system won't let me through as it's just the we're closed message.  I called health link, all they told me was to try calling a walkin clinic open today.  I did that and they can't help me.

Still waiting on the mail/for the clinic to reopen.

I'm feeling anxious already at just the thought of some of the phone calls I'll be making tomorrow to try to get what I need.  It's a new year though, hopefully things will run smoother!

You have been sounding anxious about all of these tests & appointments - so I hope you will find a way to settle a bit & see how things will unfold.  All that anxiety is bound to change body chemistry too :-)  Be well. 

Thanks Carolla.  I shouldn't be this anxious, as it's not something that would have just sprung up like cancer or something.  I just like information.

I'm also tired of just dealing with multiple health issues and didn't really want something else randomly coming up with testing because of something else.  I just want it over and done with, but with the mistakes it's taking longer.  I've also had to deal with some pretty rude people, and while I vent here, I'm very nice to the people I've had to go through to get some answers.  Many just treat me like I expect to get a specialist's appointment tomorrow, when in reality I just think that 6 weeks is excessive for a referral to actually get sent to the correct clinic.

wishing you well Chemgal-now clinics are back to regular hours here's hoping things go more smoothly. Wishing you health in 2014.

No "shoulds" about how you feel - you feel as you feel.   Recognizing anxiety is the first step to doing something about it.   I have no doubt you're feeling frustrated.

You mention that things have come to light, or at least to suspicion, with other testing.  That is often the way..  Most of us have bunches of stuff that's "off" - but out of awareness until testing occurs, and then can become another source of worry.  Some of it might need fixing, or monitoring, or even ignoring - I trust the specialist will eventually provide some guidance in that regard.  Until then ... breathe ... 

Thanks for the encouragement.

I have an appointment tomorrow less about finding anything out about my health and more about discussing issues I've had getting what I need and how to prevent this from occurring again.

I wrote out a timeline of what's happened and also noted all of the issues - both big and small.  There's a lot, and this is all directly related to getting into this specialist, not things like the false negative test results that occurred before this.  It's a bid scary to see how many problems there have been when it's laid out like this.  It feels good though, to see 'physical' evidence for what lead to the sress and anxiety I had.

I could use some positive thoughts that this goes well!

I will be sending some positive vibes your way tomorrow.  It does sound as if you have managed to contact someone within the system who will listen and maybe address the problems.  To me it seems quite a major problem that a 'system' gets put in place but then the individuals within it aren't held responsible for following through with it.  No patient should be left without support and follow up. 

This type of thing happens in a lot of the 'systems' put in place to serve citizens.  School systems are much the same.   One of my neighbor kids was 'tested' in early October and the conclusion was that she needed a computer in order to do her school work.  Despite concerned teachers and her single parent she didn't actually get one until May!  

Thanks Kay!

It was just my doctor and she's been getting frustrated with some of the same issues that were affecting me.  Unfortunately, for some things to fix the issues it would mean going really high up and neither of us has the time for those.  Ain't nobody got time for that :)

Some things were at the clinic level though, and my doctor had me meet with someone in charge there as they are currently working on a few things already, it's a fairly new clinic and a bunch of doctors recently transferred over from the previous clinic.  They can't work on problems they don't know exist so they want to hear about them.  She even photocopied my timeline notes even though much of that was issues beyond her control.  She really seemed shocked at the issues and sympathetic towards what happened.

I plan on double checking everything now.  As it was, I felt like I did so fairly often, but only when it was unobtrusive and there are things that you just don't even consider until it becomes an issue.

Unfortunately even some of the things that I thought would help prevent mistakes were already in place and we're both scratching our heads as to what happened.

I am really confused Chemgal. What symptoms do you have and what do they say is wrong?

I'll wondermail you CH.  I still don't have an official diagnosis so am still a bit private about the details.

I remember, many years ago, that a drug store gave me the wrong pills.  They were the wrong birth control prescription.  At the time, I was livid, but, it turned out, that they had to file an incident when this occurred with some advisory or review board.  Not sure of the specifics and it was a long time ago.

When I had an issue with my Dad's cardiologist, it was the College of Physicians and Sugeons of Ontario with which we filed a complaint.

I wonder if the time line shows an issue with a clinic, chemgal, if you should be filing a report with the equivalent of their overseeing body.

I once got the wrong pills too.  I questioned it at the time because they looked different but was told they were the same, just a different manufacturer.  At the time my glasses were broken and I was waiting for the new ones, so I didn't read the label.  It was a couple of weeks later that I actually read the container - right name, wrong meds.

The pharmacy was as horrified as I was.  The mix up wasn't very harmful to me but it could have been for the person who got my pills instead of their own.  I had to sign some papers and then was given the correct pills and many apologies. .

I've been in contact with the College of Physcians & Surgeons and got the paperwork to file a complaint, but I don't think it's really beneficial.  They don't oversee the clinics, they make the doctors responsible for that.  So filling that out would just mean I'm complaining about the doctors.

My doctor is already doing what she can, and the person running the clinic is going to follow up with me after talking to the staff at the clinic.

I've actually had numerous issues with a pharmacy.  I was tempted to switch, but it was a very quick walk from where I lived.  I ended up talking to the chain's district manager.  I was never actually given the wrong medication though, just short changed pills, refills not entered correctly, not able to get my medication when it should have been ready, etc.

My issue with the system is bigger.  Does snail mail really need to be used?  The letter that was lost could have been hand-delivered in 10 minutes as they don't share a complex, but are in adjacent ones.  Why is this stuff not electronic?  Why is there no record of tests ordered that my GP can see?  Why isn't there some doctor ID or something so that doctor's of similar names aren't being mixed up, etc.  There was the possibility I wasn't even going to get an appointment with the specialist if the 4th test was normal.  My GP had no way of knowing that.  There are 2 provincial organizations and I wish I had them in front of me.  I don't know how many times I phone one and I actually need the other and I end up going through 5 numbers before getting to the right spot.

There's also the emergency info.  If I go to an emergency room in the city for anything related to this health issue, this specialist is supposed to be paged.  Most doctor's don't know how to treat properly, and they end up treating for something more common and people die because of it.  I have to tell them to page the doctor though and it's quite possible I wouldn't be physically capable of it.  Why isn't this linked to my health care number?  I'll probably be getting some medic alert thing, but I don't have a diagnosis yet and I'm not even sure how much information is tied in with the alert.  Will it include to page the specialist or how to treat me in an emergency?

I'm not sure, but, all of our doctor's information is electronic, and it is shared.  Maybe it is your province.

or your doctor who hasn't bought into an appropriate management system

It's the province.  All the doctors that use mail for referrals and for sending info.  My GP's clinic would have requested tests on their computer system, but if I went to another clinic they couldn't look it up.  It's silly, the results are on a connected electronic system, but the requisitions aren't.

The province is slowly moving towards getting more things conttected but they are way behind the times.  Security issues come up.  How secure is it when my requisition form is out there somewhere?  And weird that the requisitions need to be secure and can't be on the system, but the results can be.

Hey chemgal-for parents of kids with very complex issues we suggest carrying a wallet size caed. For you it could say 'Page the specialist. I have XXX" and you could keep it right beside your healthcare card in your wallet-or even paperclipped to it.

It might speak for you when you can't.

Tabitha, I found something online a while ago but it's really big.  It would be too thick to fit in my wallet.  I should probably just make up my own and then laminate one when it's official.

Ugh, now I've found out my information has been stolen, and it wasn't encrypted.  The excuses about a lack of accessible information are BS and then other stuff just sits on a laptop without encryption.

what do you mean, stolen?

A laptop was stolen with unencrypted information of 620000 patients.

and you know your data was on it and what data it contained?

I need to go to one in person to get the specific details.  My name, date of birth, phone number and health care number were stolen for sure.  Apparently not my address.  It would have been from at least two visits, maybe more.  The health info would be based on the visits.

hard to imagine ANY health care info is being maintained in unencrypted form these days - who on earth is so ill-advised?

What position was the person in that had so much information on a machine, ChemGal.

IT contractor.  *sigh*

http://www.edmontonsun.com/2014/01/22/laptop-with-personal-health-inform...

Okay, so I have a dumb question. Why doesn't the government reissue new health card numbers to those affected and render the current HCN's inneffective and unrelated to the people affected?

I'm so sorry this happened to you.

Thanks Waterfall.

I'd be concerned about getting a new number.  lol There's been enough problems without switching it!  I don't think people can get new SINs either in cases of ID theft, that would probably be the higher priority.

I did get a copy of my health billing for the past year.  Nothing looks too off besides the number of Xrays.  I only remember 2, but I've also had other tests so I'm guessing things like CT and stuff I barely remember when going through a chronological list are listed as Xray.

There's now a class action lawsuit.  I'm not really sure how it works though, does the average person wait until the lawsuit is won?  Hopefully credit monitoring will be a part of that.

I did go get proof that I was at a medicentre during the affected period.  It was a hassle, I had to go to head office during business hours.

I'm also being more careful about double checking everything.  I used to find it annoying that I was asked about my address every time I saw a GP.  I get it when someone is there 1/year, but I'm there about 1/month.

I did see a specialist this week.  I asked the receptionist to verify my GPs contact info as she had moved clinics.  It went like this:

Me: My family doctor moved to a different clinic, I want to make sure you have her correct contact information.

Her: Oh, you changed family doctors?

Me: No, my doctor just switched to a different clinic.

Her: *pulls up info* She's on X street.

Me: That was her old clinic, she is now on Y Ave, I have a card, let me pull it out.

Her: So you're seeing a new family doctor?

Me: *mentally facepalming but trying to keep any related expression off my face* No, it's still Dr. Name, she's just at a new location, here's a card for the clinic.

In addition to much of the stuff I deal with, I've also had quite a few clueless receptionists.  Some are great, and I know some have a bad day.  There are 3 where it's more than an off day though.  I wonder how many of them are responsible for incorrect addresses.