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Anyone had any experience of this INR replacement? My local hospital; The Royal Berkshire, does not support it. This good for me as I travel extensively to places that don't offer INR.

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Dear All - I am having an argument with my GP regarding self-testing - they also use the word insurance coverage, but I'm not sure what they exactly mean by that.   My argument is that if they allow diabetic's to self test and self manage insulin, then why not someone who only really wants to self test and phone in the results.  They've told me that I can myself on warfarin (but surely diabetics can do the same but quicker!)   Is there anyone out there that can help me persuade them that this can be done at home safely and effectively. 

Anne  - Royal Berks will not support me, because they will not get the revenue from doing the tests themself.  So it could be a simple as that (not that I agree).  If you can get the test strips from your GP, it is a very cost effective method of management, and all the academic studies show your clinical outcome to be much better.

Even the Prime Minister said earlier this year, that self testing should be supported.

Sadly there are still lots of people in the medical profession who think "Dr knows best" and just are not interested in change, or what you want.  Write to your hospital and ask the why they are refusing.

Good  luck

 

James

Anne - do you get your blood tested at your GP's surgery or are you being tested at the anticoagulation clinic at your local hospital ?

I was lucky that both my GP and the anticoagulation clinic at St George's hospital were supportive of self testing. I went and purchased the Coaguchek XS and started to self test unofficially in the first instance whilst still going to the anticoagulation clinic. Once my INR's were stable they allowed me to self test - after they calibrated my machine against theirs.

If you are being tested at a hospital I would ask them if they would allow you to test.

Dear Anne,

There is a patient charity called ACE (AntiCoagulation Europe) who actively assist people who have difficulty obtaining support from their GPs regarding self testing.  Please send your deatils via email to Eve Knight at  anticoagulation@ntlworld.com.

 

If you could advise which town/county you live in I can check the local services offered in your region, which may help you in your GP discussions.

I can also send you some literature that you could share with your GP to reassure them that self testing/managing is a safe option when managed correctly.

Best regards,

Allison

Roche Diagnostics

Hi Alison

I live in a small mining village (Kinglassie) in Fife and my GPs surgery is in Leslie about 4miles away. I will take your advice and email my details to Eve. I understand that there has been a pilot study undertaken by Fife NHS - but I don't know who to contact there to find out results, although my GP told me that there was no- one in Scotland that does self-testing. I don't want to manage my warfarin I just want to be able to test my blood and phone in the result.

Many thanks. Anne

Dear Anne,

 

I have sent a message to my team in Scotland and will feedback as soon as I have the information.

Best regards, Allison

John

I go to my GP and because I live in a small village in Fife, but work in Edinburgh which takes me 1.5 hrs to get to and from it means I need to take a 1/2 day off my annual leave to have this done.

Alison:  I've emailed Eve, and many thanks for all the help.  

Dear All

Just had a letter from my GP surgery to say that they've agreed to my self-testing (but not yet managing) my INR.  This will be a great advantage, as last week on holiday in the Lake District I had registered temporarily with a surgery in order to have it done - and guess what - they've lost my yellow book - sent it to Labs with sample and it's never been returned.  I'm heading off to the Roche website to order the machine.  GP will prescribe for the test strips.   Thank you to everyone who has helped in my fight for this.

Anne

Hi all

I m having similar problems with Frimley Park Hospital (like Royal Berkshire). They only have one anticoagulation nurse and I ve been told too that they will accept self testing but I wont need self testing?

As Martina I do love travelling lots and lots and and my job takes me away for weeks or months sometime abroad. 

Allison how difficult is it to learn Self Managing? That would give me such independence rather than waiting for the letter from Frimley. And what do people mean by calibrating?

many thanks

Nicolae

Nicolae - I self test but ring in my results to St George's anticoag clinic - so I don't self dose or manage my warfarin levels. I leave my test results on the clinic answer phone so can call any time of day rather than have to speak to the nurse. I have called in my result from holiday several times and they have got back to me on my mobile.

It gives you a great deal of independence as if you are in range there is nothing more needed. If I go out of range then i don't have to wait for any letter form the clinic - they call me back and tell me what my new dose is that day. They send the sticker for the yellow book in the post a few days later whether there is a do age change or not.

Did you say that Frimley would let you self test and it was just self management they were not happy with ? If that is the case go for self testing as that gives you the independence.
Hi John she said she has a few businessmen who use cougacheck and she is using iy herself (the nurse). And they call in. But is not someyhing that is recomended or advised by the hospital.
So i guess Frimley like St George will accept me self testinng. But tgey rather have me have the blood test at the lical surgery.
They changed the way they operate.
They took my yellow book away first time and now i get a blue letter. Part of the letter is sent back to frimley with new test abd any info like if i missed a dose or changed medicine. The letter also tells me tge next date for a test.

Now we all know i guess that going to the surgery weekly or even monthly is not always convinient.
Also i have a right phobia for needles and blood so hate every time. But when the anticoagulant nurse used the small plastic thing to prick my finger i didnt mind.

My GP told me that he would accept my own readings of INR so yep i ll go for self testing.

Only that i m planning to spend a lot of time abroad with family so calling Frimley will not be allways posible?! So in that case calculatiing own dose is handy.

Thinking about it Frimley is much better than Royal Berkshirr cause shr told me i could email my results but they prefer phone messages.

Dear Anne,

I am so pleased that you got the outcome that you wanted.  Good luck using your CoaguChek.  If we can be of any further assistance please do not hesitate to contact us.

Kind regards, Allison

Roche Diagnostics

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