Hi all. I'm US nursing student, set to become a Canadian nursing student as soon as I go through immigrations, because my Canadian husband recently moved back up to Canada because his health worsened quite a bit.
Unfortunately, his health condition has been a big mystery to every one of the six or seven docs who have tried to diagnose him over the past five years. And now he has free health care again since he's been in Canada over 3 months, but he's in a remote area that only has specialists rotate through once every three months (where his family is). He is considering moving elsewhere in Canada to get better medical attention, but where?
I was wondering if I could get a referral to a Canadian doc who, in your experience, is great at addressing ambiguous possibly autoimmune diagnoses and treatments as well as heart issues? My husband has had a high ANA test for years, as well as a host of problems with his joints, energy, and skin. However, all tests specific to lupus scleroderma etc. have been negative. Now in addition to all his other problems he has A-Fib, pain in his chest, and shortness of breath. He's only 32.
It would also be great if the doc also had a certain kind of personality. My husband is pretty charming and good at relating to all types of people normally, but when he's stressed out (and he's stressed out about his health), he does better being around people who have gentle, humorous, interested, listening bedside manners.
So, that's the situation in general. I'm willing to email more specific symptom information on request, outside the public thread. Any references you have would be wonderful!
Jun 6, '09
Cinquefoil, it seems you're seeking medical advice here. That's well beyond the scope of this forum and this website. I'm very sorry your husband is going through all this and would like to suggest that you/he contact the Alberta College of Physicians and Surgeons and the British Columbia College of Physicians and Surgeons for their advice on how to obtain care for him. Just as a comment, I get the impression that you're a little uncertain about the sheer size of Canada because your question implies a small-town everybody-knows-everybody-else kind of approach. Sure there are lots of Canadian nurses who post here who live in either Alberta or BC, but just the province of Alberta is at least as big as Texas, and I'm pretty sure that Texan nurses couldn't give you that kind of specific information either. Anyway, the Alberta College's website Find-A-Physician link shows 16 rheumatologists in Edmonton and 22 in Calgary. That's where you might want to start.
Jun 6, '09
Sorry, wasn't aware that what I was asking was outside the scope of this site. Not looking for medical advice, but I guess nurse's impressions of doctors are out of bounds too, then. I can see why that might be the case, but wish it wasn't.
Jun 6, '09
Also, can you honestly say that contacting the college of doctors in any province would get me a reference to the best doc for my husband, or simply the one most in favor with the Colleges? I will continue to ask nurses in Canada for their impressions of the doctors they work with, just not on this forum, especially since as my husband is Aboriginal he ultimately needs someone skilled at cross-cultural care. I definitely don't know everything about Canada, but I know that excellent rheumatologists skilled at dealing with Aboriginal patients AND heart issues don't grow on trees. I was willing to network as part of my search.
I will use the references you gave me, but can you really say they're a solution, or another goose-chase?
I understand that nurses do not know everyone. Are you also familiar with the saying "Six degrees of separation?" Asking randomly is better than never asking at all. I was taking a chance, the chance didn't pay off, and I've only lost the time it took to type this.
As I said before, I'm sorry that I didn't know this forum wasn't an appropriate location. It's been a while since I signed the user's agreement. I won't make that mistake again.
What I wish is that you could have shown a little emotional sensitivity in your response to me, and perhaps avoided implying I was some sort of hick rube unaware of the scale of my question. This is my dearly beloved husband who is ill, after all, and what would it have hurt you to show an ounce of sympathy?
Jun 6, '09
Sorry, on rereading the post, I saw that your providing the references, plus saying "I'm sorry" DOES qualify as an ounce of sympathy. I guess in my emotional state I was looking more for a few more ounces, but that's not your fault....
Jun 6, '09
I understand that you are stressed but I think you were unfair to Jan.
I read your post soon after you posted and my first though in all honesty was "does she have any idea of how far apart those four cities are?"
"A certain kind of personality" means many different things to different people. My GP is great to me and my family BUT I've heard from others that he is terrible. The same with surgeons that I work with. I've seen some of their patients who have nothing but bad things to say while others praise the ground they walk on.
If your husband has treaty status, the band health office is probably the best place to start.
Jun 6, '09
Just wondering if you need a referral from a family Dr. to see a specialist in Alberta or British Columbia?. We do require a referral in Ontario to see any specialist and it is only good for one year. Is there a shortage of family Dr.'s out west?
The difficulty that we are having in many parts of Ontario is that there is a very severe family Dr. shortage. In my city of 300, 000, there are no GP's accepting any patients at all. I don't think there is as severe a shortage of specialists in some areas but the wait times can be up to a year for some specialties. I drive one hour and fifteen minutes to see a dermatologist for my teenager.
Jun 6, '09
Yup, Linzz, you need a referral letter from your GP or NP to see a specialist. Most I've worked with refer you to the specialist of your choice if you can give them a reason why you want to go outside "their" circle of specialists.
From what I've seen if your condition is urgent enough, you go straight to the top of the appointment list.
I'm not sure how cross border referrals work. That's why I said if her husband has treaty status the band health agency would probably be the way to go. It's not like we still have dedicated "Indian" hospitals like the old Camsell in Edmonton.
Jun 6, '09
Cinquefoil, if we allow the posting of individuals' names on this forum when the purposes are to praise them, it's hard to then NOT allow the posting of individuals' names when the purpose is to defame them. In the same way, because this forum is open to anyone with a computer and web access, the possibility of any sort of harm to people who are identified in such a manner can't be ignored. However, if there is someone with information they can provide to you about individual physicians who would be suitable to treat your husband, there's nothing stopping the private sharing of that info.
I totally understand your desire to find the best care for your husband; his illness is obviously causing a great deal of stress to all of you. As Fiona59 says, if he has treaty status, his band health office can and should be providing some guidance in this quest. They would have at least a little knowledge of which specialists others from that comunity have been referred to before and in small communities like most First Nations communities, there is a lot of comparing notes that goes on. If anyone has had a particularly good or bad experience, someone else in that community will know. Also, if the physician he is eventually referred to is practicing through a tertiary care facility anywhere in Alberta, for example, there will be an Aboriginal Services department there that will act as a support and resource to him and to you. And as a First Nations Canadian, he would have been covered for his health care the minute he crossed the border back into Canada, since First Nations' health care is a federal and not provincial programme. It's awful that that was overlooked, because he could be much farther down the road to recovery had he known that. It's a horrible thing to be so sick and not have any idea just why you are and to be untreated because of it. He's lucky to have someone like you who understands him so well. I hope he finds the help he needs so that he can at least have a diagnosis. Best wishes in your search.
Jun 6, '09
Sorry again. I think (read on for proof) that I have a good idea of how far apart these cities are. I chose them not for their geographical proximity but for the fact that they're large urban centers where my husband has family he can stay with. In the past, I've read posts from people from all of those cities in this forum, so I don't see why it's striking anyone as strange that I should expect to reach the nurses of all of these cities at the same time by posting on this forum. Why do the cities have to be close to each other for my strategy to be reasonable on an online forum? Is this due to a nuance of the Canadian health care system that I don't understand?
My husband and I are aware that he would have to live in any province for a while before he got health care there. He's willing to do that if it means he gets better care than he's currently getting.
It's great that your GP is great to you. I understand not all docs are the same way to everyone. In the end, the responsibility of finding the right fit lies with the patient. Still, someone who is at least great to a few people is at least a lead worth investigating further. And I was also asking about clinical experience with certain, very rare types of cases. I was simply casting my net widely, instead of narrowly, as at this point my husband could feasibly move to any one of those cities.
The band health office is in the same remote location he's in right now - what could they do?
Perhaps if he contacts other Nations' band offices in some of those cities, though....so thank you for the idea.
Jun 6, '09
Thank you, Teambuilder. I absolutely agree about the names, now that I stop to think about it.
And holy !!!!!!! I can't believe he's had free health care this whole time! That is actually the best news I've had all day! So in theory could he move to any of these cities and instantly get free care? Or is that only if they have a First Nations facility?
My husband hasn't directly asked the band office yet, so maybe given what you've shared with me he could. On the other hand, his Mom works at the band office, and no Native person in her social circle that he's asked has been able to even tell him about anyone else they know who has suffered a similar condition. But maybe he's just asked the wrong people so far.
He's pretty far North right now. He's had no trouble finding a GP but the GP has already pooh-poohed any connection between his autoimmune symptoms and heart troubles...and this is without seeing any records or running any tests. So he's not likely to get a referral there and may have to find another GP to even have a hope of a referral.
Last time I talked to him he was really depressed because he's sick of being a young man with the body of a sick 55 year old, and I can't afford to be in Canada until I get PR status or at least a work permit, so I'm stuck a five day drive away, trying to do what I can from this end.
Jun 6, '09
And THANK YOU all those who are sharing some of the intricacies of the Canadian medical system especially re: First Nations with me here, especially Teambuilder. That is GREAT info, better even than any references, and extremely, very, wonderfully helpful!
Jun 6, '09
Umm... the band office and the band health office or nursing station are different things. The band office is like city hall in any other sort of community; they deal with civic administration. The nursing station is the clinic or hospital in the community; they're usually staffed by nurses around the clock and have physicians on site on a rotating basis except for the larger communities where they'd have a more comprehensive health centre. The nursing station is the first contact in the system for Fisrt Nations residents. They act as the primary care practitioner in the community and as a liaison between the community and the acute and tertiary care facilities in the city. As an example, let's say Mary Crowchild lives on a remote First Nations reserve; she isn't feeling well and goes to the nursing station. The nurse takes her history and does some basic examinations. Mary's blood sugar is almost double the desirable so Mary goes back every couple of days to have it monitored until a pattern of hyperglycemia is proven. Mary is then referred by the nurse to a GP in the nearest large town. The GP and staff provide Mary with the initial care for her Type II diabetes and when she returns to the nursing station for followup the nurse there will have her records from the GP's office and knows the treatment plan. S/he provides primary care to Mary and between them they get Mary's blood sugar back to normal. Some time later Mary's urine output drops off and she starts becoming edematous, especially around her ankles. She goes back tothe nursing station where the nurse does some basic tests to discover that Mary's kidneys have become compromised. Mary receives a referral to a nephrologist in the city; the federal government provides transportation to the city and accommodations for Mary and a supporting person so that she can have a renal workup. Mary's kidneys are damaged but not to the point where she needs dialysis. So she returns home with a low protein, low potassium diet with instructions for ongoing followup in the city. So that's how the band health office or nursing station can help your husband find a referral to a specialist while the band office where your mother-in-law works can't.
First Nations health care is not restricted to "First Nations' health facilities". They receive care at whichever health care facility has the services they need and the bill goes to Ottawa. Many of the patients I care for at work are Aboriginal; a lot of them come from the far north. Our hospital has a wonderful Aboriginal Services department; the social workers there work in conjunction with our unit-based social worker to ensure that whatever supports the patient and family need are arranged for and that there is someone who "speaks their language" (even if it's English!) who can help them find their way through the health care maze. We have sweetgrass ceremonies for patients in their rooms (the only hospital system I know of that allows this) and we have a sweat lodge on the grounds. We also will provide for customary or cultural dietary needs.
Now what your husband needs is the initial referral so that he can start making connections and get a diagnosis. Having a name for his problem will help him a lot! It's possible that his autoimmune condition has nothing to do with his heart problem, but without an adequate assessment knowing that isn't possible. And nobody will stop him from looking for a better fit with his GP, so if he has family in a bigger community, maybe he should be paying them a visit. Then while he's there he could just "get sick" and go to a medicentre where they'll say, "Gee, I don't know why you're sick like this, so let's refer you to someone who can figure it out!"
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