self testing - a severe blow

[panda60]

I have been self testing for the last four years and my PCT have prescribed the strips. Got back from holiday to a letter from my surgery to say that Surrey will now only prescribe 10 test strips per year - worse than useless as far as I'm concerned..

My inr is stable at the moment but I still like to test once a week to make sure and when it goes out of range sometimes need to test twice a week. Don't know what to do. Will have to go to INR clinic to see what they say; yet another appointment to add to the list!

[Hidden]

I am so sorry to hear this has happened to you and absolutely agree that this is definitely one to raise with your MP. Another case of postcode lottery.

[panda60]

Was thinking again this morning about the financial implications of cutting down on the number of test strips they allow. If they do this to everyone who self tests more than ten times a year then surely it is going to add to the costs of running the clinics and creating longer waiting times? Also puzzled as to how they are going to adminster this - letter says we have to get the strips from the clinic. They come in packs of 24 and each pack has a different identification number with a chip that has to be put into the machine. So how are they going to cope with that one????????

My surgery is in partnership with another and clinics take place at both. My one is ok but the other one is further away and even with a blue badge parking is hopeless, so if I have to go to that one will need to fork out for a cab which will cost me £10 return.

I am going to speak to the warfarin clinic later in the week. I feel sorry for the nurses there because they are so kind and helpful and the ones who are going to have to bear the brunt of all this. Then I'll take advice on how to tackle the PCT

[bernieembleton]

Hi I use the self testing machine. Write to you PCT and put your case to them, that it would cost them more to test in the laboratory every week, over the year. I told my doctor that, has each fial of blood taken to send to the lab would be more than my test strips. He put them back on my prescription list. Hope you have sucess.

[panda60]

Thanks. I will try. My surgery also uses the Coagucheck but I can't believe that all surgeries across the whole of Surrey do.

[Hidden]

Bad news Caroline Some PCTs won't offer the strips on prescription at all, but this is an interesting development in Surrey which has always been proactive for patient self-management. I will let Anticoagulation Europe know about this as they are continually campaigning for self-testing to be available to everyone. However, I think this current government are trying to squeeze the NHS so we become a part private/insured health system so wouldn't hold your breath unfortunately ...

[anniesensi]

This is another pointless "cost saving" error by your PCT. All this drives me mad!

When I bought my coagucheck machine they did say to come back to them if my PCT wouldn't fund... I wonder if they gave any advice? Perhaps there is something they can do? Or, probably they will just arrange to sell strips to you... keep us informed. It's maddening, we really need to keep stress to a minimum, and all that to seems to be happening is obstacles in our way to cause further stress.

Good luck, and best wishes.

x

[Hidden]

Hi again Caroline - I'm not sure if you've seen the announcement by Pulse but this explains the current government's plans to allow the private sector to start governing the operational strategy of the PCTs: pulsetoday.co.uk/newsarticl...

It seems that your GPs surgery will have been encouraged to get you to buy the strips in the future. I am not sure when/if this will apply to all PCTs but we must keep an eye on things ...

[thomas_tz]

Hi, I am sorry to hear that you are having trouble with the strips. I hope this is resolved soon. On a more technical note; I have read somewhere that the strips might be incompatible with some of the patients with APS. Is that a myth, or have we got any information on that? I am asking as my GP wants to move me from a vein blood draw to a machine test, similar to the one you are having at home.

Thank you,

Thomas

[WarfarinKid]

Hi sorry this is a late post. I self-test, much to my GP's disgust! & have never been able to get the test strips on prescription. My surgery only test my INR level once a month, which i consider to be totally inadequate as my INR fluctuates wildly! One month it can be 1.9 & then the next its 3.1 (target range 3.0 - 4.0). I self-test & then adjust my Warfarin dose accordingly! I was very ill in the beginning when i had my first blood clot & even think i've had 2 tia's but get no support whatsoever from my GP's, but at the end of the day i feel its my life & i'm terrified that i'm going to have a stoke & end up incapacitated, so why shouldn't i do whats best for me? I have been unable to get a diagnosis of APS through various local hospitals, they just won't have it that i've got it - even though i have a friend that is training to be a haematologist & he's looked at a sample of my blood through a microscope & shown me how my blood cells are sticky & they all clump together! So i do whats best for me, even though it is costly!