Sticky Blood-Hughes Syndrome Support
8,095 members8,333 posts

AntiCoagulation Europe, part of the AntiCoagulation Self-monitoring Alliance Calls for self-testing monitors to be available on prescription

The countdown has started to the launch of a new campaign aimed at giving long-term warfarin patients greater choice in the management of their condition.

There are more than 1.2 million people in the UK on warfarin of which less than two per cent benefit from self-monitoring, despite evidence that it can cut the risk of death by nearly two-fifths and more than halve the risk of strokes. The AntiCoagulation Self-Monitoring Alliance (ACSMA) is launching a new campaign with the specific objective of achieving greater access via prescription to INR self-monitoring technology for patients receiving warfarin therapy.The alliance is also seeking to raise awareness of the benefits of self-monitoring and aims to ensure that patients are equipped to have informed discussions with their healthcare professionals on this topic.

The campaing will launch in the House of Commons on 24th October 2012.

We will keep you up to date and informed about how you can support this campaign.

Read more about it at:

18 Replies

Good luck to them. I know when I was on warfarin my anticoagulation clinic was aggressively against self testing mainly because of the ignorant beliefs of the doctor in charge of the clinic. they may have an uphill battle but I am with them all of the way.


Thanks for this. Having been prescribed the strips for four years my local PCT has now decided to only prescribe enough to test 4-6 weeks. I need to test each week and cannot believe that having to go to the clinic instead is cost effective and the nurse isn't convinced either. So I hope that some the campaign will have some effect. Incidentally Anti-coag Europe is worth joining as they publish a good quarterly magazine and some useful booklets on warfarin


For me so far self testing has shown very close correlation to my venous samples. I feel far more confident and therefore safe to travel now abroad. Luckily so far for me i can get strips on prescription so feel for you caroline lets hope this campaign will mean your pct will go back to prescribing as before.

This is an individual issue as i know for some people with hughes coagu chek is not suitable but for those that it works for this is great news ;-) kx


i didnt even know you can do self testing never heard of it before ive always gone to the health centre every week to be tested


This would benefit me loads, at present I have to attend hospital at least once a week to get my INR levels checked. This would be a saving on the hospital time also. Good luck to those fighting for this......


I am British but live in Cyprus. I have hughes, athersclerosis and a blocked carotid artery. I have to be tested weekly as my INR has to be btwn 2.5 and 3. A I am under the age of retirement I have to pay for my tests. I know it is not much 10 euro pr test but since being on warfarin I have had over 60 tests. I have looked at buying the machine (300.00 pounds) but it is the testing strips which are 127.00 pounds for 30. I hope this campaign works. Well done


Oh no this doesn't work for me. My coagucheck machine gave me the wrong results. I was under coagulated and had a heart attack while on warfarine. Now I rely on the haematology clinic in hospital.

Good luck for those who can self-monitor.


Thanks for posting this, very useful, I hope they succeed, quite a few Hughies would benefit, although its not suitable for all of us!

Good luck!

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


I really hope they succeed Prof Hughes advocates self testing for all his patients and why shouldn't we?. Diabetics are considered capable.

I am lucky at present as my GP's give strips on prescription. I was sacked by my local coag clinic and told never to come back if I dared to use my own machine. So 8 years on I am still alone and self dosing etc.

I imagine it will be an uphill struggle to get machines out there is some PCTs are stopping precribing strips due to cost.

However I feel the time and wages invoved in making us all attend clinics must be higher.


That is deplorable - where is their duty of care? I would be writing some very stern letters to the Hospital Management because you cannot be left unmanaged. Who checks your machine against Venus samples for instance, your GP?


I have been left totally unmanaged for 8 years. My GP said I most likely knew more than him and he would allow whatever Prof Hughes said. he retired another GP followed suit. He told me my Coaguchek XS was what they now used at my surgery but never asked me to come in and compare. He then retired. I now effectively have no GP who knows about me and am actually quite scared to make myself known incase they decide to withdraw something.

I have had 2 machines and neither have ever been checked. i basically go on how I feel, check INR and alter my own dose. I have to say at present I am not very successful I believe that due to going into menopause my hormones are affecting it.


Oh Jade! I can understand your reluctance on this but must urge to get yourself checked. Please tell me you will go and get a venus check done at your surgery. You dont have to make too much of a fuss about it. Just make an appointment with the nurse and say you are getting your INR checked. With a bit of luck it will correlate with your machine and you can be reassured.


Fingers crossed. I know most of us feel like we spend our lives in doctors surguries or hospitals. My INR checks often taken an hour due to waiting and that's before my 30 minutes travelling time to get home again.


I have been taking part in a study by the Division of Public Health and Primary Health Care at the University of Oxford for some time now. I was phoned regular intervals and had telephone interviews plus had to send in regular data on my self testing. I was then visited and a chip inserted in my Coaguchek to make sure the readings I was taking correlated with theirs. Although they did not specifically say so this may have something to do with research into self testing being available to more people. I have to say, it has freed my life up considerably, especially as I can no longer drive myself to the hospital for testing. They had no real knowledge of Hughes there and I had to fight to get my target range raised. My GP though, has been nothing but supportive, and certainly at the moment continues to give me test strips etc on prescription.It seems to me that this campaign seems to be just plain common sense and also financially viable.Stella


I am extremely lucky to be under Prof Hunt at St Thomas' Hospital, have brilliant support haematology specialist nurses at my local hospital and have been self-managing my INRs and warfarin for 6 years. My machine is never more than 0.1 out from the clinic venous samples.

My GP is also happy (so far) to fund the test strips. All this had helped prevent me having further TIAs and allowed me to travel extensively and carry out a near normal life.

Antioagulation Europe is an excellent patient advocate organisation and I wish them good luck with the legislation. I agree it is worth joining them as they provide valuable information to members. Self-monitoring is not possible for everyone, but I would strongly recommend it for those who can. Good luck all.


I have been self testing for over 6 years after I was asked by Professor Hughes to take a daily INR test for a couple of months and chart the results against my migranes. I phone my INR reading into the local anticoagulation clinic each week and they phone back with my daily warfarin dose. Once a year I go into the clinic and have my machine checked against theirs (same make and model as mine, by the way) and it is always within a tenth of a point.

2 years ago the local PCT stopped my GP from giving me my test strips on prescription, with the excuse that it was more cost effective for everybody to go to the clinic, which my GP (who's mother self tests) agreed was stupid.

Now I have to buy my strips direct from Roache and have them delivered, but that still works out cheaper than a taxi to and from the clinic each week as I am not able to drive at the moment.

I do not believe my anticoagulation clinic understands Hughes Syndrome and I often have to question the dose they prescribe.

When I was in the High Dependency Unit at Manchester Royal Infirmary a couple of years ago after a massive abdomenal haematoma the consultant heamatologist was facinated by my machine and asked me to run q & a sessions for hospital staff on the machine and on managing my Hughes, as I was their first APS patient who self tested.

It was made clear to me that without my daily dose of warfarin and INR monitoring I would die, but I am not eligible for free prescriptions (thank goodness for the annual prepayment scheme) or the strips to enable me to monitor myself being included in my prescription, so all I can do is say is all power to this campaign and I will be joining up and helping in any way I can.

Oh by the way my husband has type 2 diabetes, his testing machine was VAT free, his strips are on prescription, which he gets free, where's the fairness ?


Good Blog Jan and an excellent comparison. Have you considered taking this to your MP?


I did take part in a campaign under the last government to have Lupus and APS recognised for free prescriptions, which included writing to a number of MPs from both sides of the House. the health minister at the time said"... as she had never heard of either condition it must be very rare and would not be included in the next review ..." !!!

I really must start it up again with the current lot


You may also like...