What is the role of a GP when a patient is in ESRF?

[kristina]

I was wondering what the role of a GP (General Practitioner) plays in the medical care of ESRF patients?
I have been registered with quite a few NHS-GP’s for many years, but unfortunately (perhaps because I suffer from a rare chronic disease)
I never had any good medical luck with any of them... In my case NHS-GP’s were never able to diagnose anything or help me medically:
before I suffered cerebral haemorrhages, I went to a GP and they “forgot” to check-up on my blood pressure (which was out of control...),
they even ignored the fact that I complained of terrible headaches and could hardly keep my balance...
...When I suffered from chronic osteomyelitis on a fractured ankle, they misdiagnosed it again and again (I could hardly walk...)
 ... and I ended up having a final emergency operation to safe my ankle and my leg just in time to avoid an amputation...
... Before I suffered a stroke, I again went regularly to a NHS-GP and he was even unable to diagnose that my regular “black-outs” were Ischaemic attacks,
a medically well known warning before an impending stroke... after I had suffered the stroke this NHS-GP took me off his GP-register,
because I would cost too much of his valuable Surgery-time and rehabilitation to get back to normal again...
...so this NHS-GP left me to my own devices: half sided paralyzed and unable to speak or look after myself...
... NHS-GP's were never able to assist me medically to get diagnosed with Systemic Lupus and MCTD...
...they were not even able to sent me to a medical specialist for blood tests to find out what was medically wrong with me..
... I had to travel all the way to the Continent to finally get my diagnosis...


I have talked to many other chronically sick patients and was informed, that  NHS-GP’s are well known to “collect” as many names as possible,
in order to earn as much money as possible (the more patients on their list the more income...),
... but their medical care and medical knowledge leaves lots to be desired...  especially for chronically unwell patients...
... Unfortunately nothing can be done about it, because vulnerable chronically sick patients are not well enough to use their elbows
and sort things out for themselves and healthy people don’t know about the problem with NHS-GP’s,
because they don’t need to consult with a NHS-GP or any other NHS-doctor...

Ever since suffering the stroke, I have avoided NHS-GP’s like the plaque...naturally... whenever I could...
... and for the past 11 years I have not even consulted with any NHS-GP ever
(during which time they have collected money on my behalf, because I have been registered with them...)

P.S. Before I forget, I should put the balance right: I have seen the same (private) dentist for over 25 years,
he is also a dental surgeon, a dental doctor and a gentleman ...  he is well known to try and avoid any pain...
...and I have seen him twice every year for over 25 years... and he looks after my teeth perfectly...
... and I have  had no problem ever with this dentist, he is just perfect and very professional...
... I thought I should mention this to put the balance right...
 
... I wonder if GP's have any role to play for patients in ESRF and if they have any role to play, what sort of role is it?

[obsidianom]

So much of that depends on the system and the individual doctor. Your country and the US are different in terms of system . In the US there arent really any old fashion GPs left . Internists generally are "primary care " providers and are fairly well trained . Some are better then others.
In my wifes case we dont use our primary care doctor for much as we use specialists since I can do the primary basic care . She writes prescriptions for my wife as it is considered inappropriate for family to do that but otherwise I moniter my wife. Our nephrologists are really the most important doctors now. WE see them monthly at clinic as we do home dialysis.
In general I prefer specialist based medicine. If you can navigate and work with each specialist it works better. Not everyone can handle that , so internists are used to "captain the ship" so to speak. In the end it depends on how much you as the patient want to do yourself and feel comfortable doing. The more you do yourself, the less you need internists and the better specialists work for you.

[iolaire]

I find them not that helpful for chronic conditions but they are there for off type aliments - I think I'm talking about an Internists = GP.  I've always had rheumatologist because of lupus.  But that's not been active for 20 years, so I had a GP who in exchange for annual checkups was there if I needed Cipro for travel, or if I had a bad cold and wanted antibiotics, if I needed a cast, etc...  Now that my kidney is my primary problem area I have my nephrologist but I still go to the GP and rheumatologist annually incase a problem crops up. 

I guess I sort of view it as an investment incase something new crops up, they should help diagnose problems, but as they identify (or are confused by) the problem they probably would just send me to a specialist.  But referrals might just be a benefit of living in a metropolitan area, if I lived where I grew up in a town with a population of 3,500 I would be highly dependent on the GP.

I've gone to my current rheumatologist for about 4 years now, each appointment is just a quick discussion of how I'm doing - were I say good - and then me walking out with a lab slip - but you never know that lab slip might report something bad sometime.

... NHS-GP's were never able to assist me medically to get diagnosed with Systemic Lupus and MCTD...
...they were not even able to sent me to a medical specialist for blood tests to find out what was medically wrong with me..
... I had to travel all the way to the Continent to finally get my diagnosis...

Miss diagnoses has long been a problem with Lupus, I had my own experience, I guess in my view GPs are good for common issues but they have a harder time with things they don't see often, and things that show up multiple places in the reference books - i.e. lupus that has symptoms similar to so many other diseases.

[monrein]

I have a very good GP and I see her for things that are not kidney related...a broken ankle, flu shots, etc. She refers me to specialists and makes sure that my visits to these(gynaecologist, dermatologist, breast and colon cancer screenings for example) are done and she keeps reports on file. She has a good relationship with my nephrologist and does not hesitate to consult him if she is unsure about contraindications or interactions. My nephrologist himself has commented to me about her thoroughness and attention to my care. I also take a very active role in my own care and call her to be sure that specialist referrals and appointments are made.
I am very lucky to have her and my husband has now switched over to her care also.

[jeannea]

As in any specialty, there are good doctors and bad doctors. I understand it can be harder for you to change doctors than us. I have changed doctors in the past when they were unsatisfactory. My primary care doctor right now is good. I see her for check ups and some of my non-kidney issues. Keep looking for a doctor you can trust.

[Deanne]

My primary care doctor gave me the boot because I never went to see her. My neph has referred me to specialists when needed and I see a gynecologist for female stuff. There's really nothing left for me to see a doctor about. I didn't see a point in making an appointment just to remain on someone's patient list.

[Shaks24]

I have not seen my primary in years and years. I doubt they even know I am on dialysis.

[marlinfshr]

I have a nephrologist and a cardiologist. I feel stupid whenever I fill out forms and they ask who my GP is. I mention the name but state that I haven't seen her since before I had these problems. I will probably need to see her though in the next sevberal month's because the more I think about how I feel I really want a second opinion on whether I need to be on dialysis or not and will probably need a referal.

[kristina]

Thank you all for your kind thoughts and replies, it is very much appreciated.

I was wondering whether or not I am “losing out” by not having gone to a NHS-GP for so many years
but you have shown me, that I am not alone there… I appreciate this shared knowledge very much...
... I was also wondering whether I should “make use” of the services of a NHS-GP for further blood tests etc.,
but then I thought again, because the last time I had a blood test taken at a NHS-GP’s surgery,
he did not wash or disinfect his hands (with which he “tapped” the site before taking my blood)
and he did not disinfect the site, where the blood was to be taken and I still shiver at the thought of it…
...I don’t think I am prepared to take the risks involved...
... and I better “stick” to the (very hygienic) blood-taking-services of “my” nephrologist… much safer…

Thanks again from Kristina.

[JW77]

Sorry for the slightly late reply.

All UK residents are supposed to have a 'named' GP who they can see:) Its a joke.

As for your question.

What is the role of a GP when a patient is in ESRF?

Not a lot, is my answer. I changed GP's a couple of years ago, after I discovered my GP was unaware that I'd been in hospital for 10 weeks, had a heart attack, and had been wheelchair bound as a result of meningitis.
That maybe was the fault of the hospital for not updating her, or maybe the postal system. Shrugs.

However, when she filled in a report form for the DWP, for a benefit claim, stating I was living on dialysis twice  a week, I promptly switched to another practice, this time with more doctors.

I've still never seen my named doctor, but, if I've got something minor, ear infection, etc. I might book an appointment.  They also run an 'annual checkup'.  A couple of times I've used them for monthly blood tests (when the home heamo nurse isn't available) which they rarely seem to get right.  They do have a proper phlebotomist to take blood, who does a very hygienic job of it.

They did once request a urine sample to check on my 'ongoing diabetes'.  Well it was NEWS to me that, A I passed Urine, and ,B I was diabetic..  I wrote them a polite reply telling them to update their record...

Anything related to my fistula, BP, dialysis goes straight to the hospital. All I get via the GP is repeat medication, although even then I do that with a quick phonecall to my local pharmacy, who puts in the request to the GP practice.  The exception is EPO which gets delivered by courier.

It usually takes me 30 to 60 seconds by phone to get a repeat prescription.  If only GP's were that good!

With the very RARE GP that might specialise in renal, you might be comfy being more involved with them, but very few do, as its a bit specialist. 

Oh, and their useful for the seasonal flu jab.. If your so inclined:) They have their uses, but don't usually play a major role in our care:)