Can I ask who self tests and gets the... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Can I ask who self tests and gets the strips on prescription?

JanBad
JanBad

My local GP practice is refusing to provide my test strips on prescription and even Roche, where I buy them from say they should be.

I would like some evidence to try and fight the GP's decision.

21 Replies
oldestnewest

Hi I self test and get my strips on prescription from my anti coagulant team. My GP wasn't keen on giving the ok so my haematologist who is fantastic agreed to give the prescriptions as he is overall responsible for my Anticoagulation. It makes such a difference being able to self test as my INR is up and down so have to test weekly and I was always at hospital, this way it's much easier. Thanks Sam

Hidden
Hidden

Hi - I'm afraid we are in postcode lottery territory as some practices are extremely supportive, while others are not. If you want to challenge your GP's decision, please look at Anticoagulation Europe campaign material: anticoagulationeurope.org/f... - you're not alone with this fight. Good luck :)

MaryF
MaryFAdministrator

Sorry to hear this - it s common problem, and an idiotic one in my opinion, as patients who test as well as going to the clinic are keeping a good eye on themselves, and ultimately will save the local NHS money. I hope you manage to convince them. Mary F x

I self test and get my strips on prescription. My understanding is there is no good reason to refuse to give them on prescription as they have been listed as being suitable to prescribe since 2002.

I recently saw a new GP at my practice who thought self testing was sensible, safer and cheaper. So luckily that's another one at my practice on my side.

Me too. Get and keep NHS receipts as you might be able to claim back if you get a result.

Mine have stopped prescribing more than 12 per year and there is no hope of changing this. The nurse has been giving me some extra but has had to stop as my surgery is in trouble for having prescribed too many!

I used the argument that where I needed to be tested every week, I would be saving the nhs a lot of money by them providing me with text strips instead of me taking up an appointment, nurses time, then the cost of a blood test etc It worked

Hi all,

Here in Sweden everyone on warfarin can have a Coaguechek-machine for free and of course the strips also. This is since 1/1 2013. They have found out that it is cheeper than the other way!!. Most of all it is safer. First you attend a course for one day.

I really hope you my friends in England also will have this very soon!!.

Kerstin

wildchild
wildchild in reply to Lure2

Fantastic, how forward thinking of your country......shame UK makes such a simple request so stressful and difficult for anyone with this condition.

Aica
Aica in reply to Lure2

Hi. I am afraid this a wish... The coagucheck machine is only free in parts of Sweden. Stockholms landsting. I live in Småland. I Will have to pay SEK 6000 fot it. Test strips are free. After 8 years of weekly tests i Will now buy one. I was recommended the new drugs but Will not change from Wafarin until I Know more about the new ones. Första gången jag ser någon från Sverige i ett APS-forum! :) har själv inte varit aktiv på några år men är nu tillbaka för att jag känner att jag behöver uppdatera mig. Hälsningar Annica.

jonfromoz
jonfromoz in reply to Lure2

Hi Kerstin, I live in Sweden but did not know that these machines were free. How is this arranged? john

Lure2
Lure2 in reply to jonfromoz

I live in the Stockholm area. Here the Machines are free? Where do you live?. Please tell a little more of yourself. There are very few from Sweden on this site.

Who has diagnoses you?

Best wishes from Kerstin in Stockholm

jonfromoz
jonfromoz in reply to Lure2

I live in Västmanland but had AF ablation in Karolinska, Solna. Been on waran for 2 years

I have a coaguchek xl and I bought it myself, I go to the Warfarin Clinic and they provide me with the next lot of testing strips. My GP prescribes my Autolet for for use with the pen to lance the finger.

I purchased the machine myself or rather my husband did for my birthday what a treat !!! I have the strips on prescription and feel i save the surgery money and time as i dont need to go there every week for them to check my inr.also they were happy to get rid of me as my ratio terrified them,contact your MP thats what they are there for good luck

Hi

I live in Bristol & no way can I get the test strips on prescription! My GP's absolutely hate the idea of self testing & feel I shouldn't be doing it! I bought the Coaguchek machine but can no longer afford the test strips! My Inr varies greatly from 1.8 to 4.5 but my surgery doesn't worry about it at all & only test me once a month!

I self test, gp won't prescribe strips as not in control of warfarin etc. Local haemophilia centre prescribe lancets, strips and warfarin.

I have been doing my own IR for about 10 years now and have never had any bother getting test strips or needles of any of or G Ps

Lure2
Lure2 in reply to bettley

Hi, I have selftested for almost 3 years and I have Lupus Anticoagulant.

What is your therapeutic range and do you ever had a bleed or a clot when selftesting?

At what INR do you feel best without symptoms?

Best wishes from Kerstin in Stockholm

My I R is always kept at 3.5 to 4.5 I have had 2 DVTs even at that range and t I a s but keep thinking positive Ian

Lure2
Lure2 in reply to bettley

That is a quite high INR. What INR-level were you on when you got your 2 DVTs?

It is not common to have APS and be able to selftest for 10 years, Then you know your body and how it reacts on warfarin.

Best wishes from Stockholm

Kerstin

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