Self testing help.: I have purchased a... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Self testing help.

Tinythepanda profile image
10 Replies

I have purchased a self testing kit from one of our lovely members.

My coagulation clinic and consultant think this is a fantastic idea. However, my GP is refusing to prescribe the strips. They have said as its not the clinic providing the machine they will not find them. I've advised them that the clini do not provide machines and you have to purchase them yourself.

How did the self testers among us get the strips on prescription? And did you face any difficulty with this?

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Tinythepanda profile image
Tinythepanda
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10 Replies
daisyd profile image
daisyd

I am very lucky I get mine on prescription I know some people don't, perhaps you could ask your consultant to write to your Doctor. Good luck

MaryF profile image
MaryFAdministrator

Get your consultant to write to the GP, this may help, it does vary from area to area, and really it is a crying shame that this is made so difficult for patients. MaryF

panda60 profile image
panda60

I used to get mine on prescription but then they stopped so have to purchase them myself. Policy of my CCG and nothing I can do. It is expensive but it puts me in control and I only have to go to the warfarin clinic twice a year for my machine to be checked. Otherwise I phone them for changes in dosage if out of range or if need advice. Works well for me.

Lure2 profile image
Lure2

Hi Tinythepanda,

Good luck with what APsnotFab suggested! You will also help others.

Kerstin

harrio profile image
harrio

I also get them free on prescription, I guess it's down to your GP.

Deedee2014 profile image
Deedee2014

Unfortunately in Australia you can't get the strips on prescription. Each strip works out at around $6. At least it saves me the time and energy by eliminating doctor's appts and blood tests.

Tinythepanda profile image
Tinythepanda

Thanks very much for all of your replies and I'm pleased to say the GP has now prescribed the strips :) so so happy

Yllek profile image
Yllek in reply to Tinythepanda

That's good news. My GP agreed as well a few weeks ago so I've started self testing. Good luck x

loppylou68 profile image
loppylou68

GP apparently should not refuse you according to NICE

(I did call them when my GP and practice manager were giving me the run around) they did actually say that GP's could prescribe the actual machine it was purely down to them......

Mine avoided and delayed it at first but we got there in the end

Good luck 🍀 it is great to have some control finally with my loner from the fabulous hughes-syndrome foundation 😁

Fusch profile image
Fusch

Really, they can prescribe the machines too? I only have one on loan atm. My gp prescribes the strips.

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