AntiCoagulation Europe wants to get a clear picture of where people are having difficulties either in getting testing strips for INR monitors prescribed or they are allowed to have them on prescription but are having the amount they can have rationed.
We are hearing more and more of cases of where people have been self-monitoring for some time but are now being told that they can no longer have their strips on prescription.
Please help us to build up a picture of what is happening and where in the country. Email us with your experiences. Thank you.
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warfarin1
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Hi, I have been self-monitoring for over a year and so far I have to buy my own testing strips. Last week I went back to my doctors and again asked if I could have these on prescription. I have been told that I will have an answer by the end of this week. I had already previously asked to only be told no. I live in Essex and know of other people around my area that get their strips on prescription.
Do you know what the name of your Clinical Commissioning Group (CCG) is. If others getting the strips are with the same CCG it may be just your GP surgery that is saying no.
If you let us know we will put the CCG on our map/list and we will write to them. We will not, of course, mention your name.
CCG is Basildon and Brentwood. I have asked again at my local GP surgery in Laindon, Basildon, but have still had no luck. I am still pushing to get the strips on prescription. Thank you
After my recent post stating that I was still having no luck with my go surgery I am now pleased to say that I am receiving testing strips on prescription 😌
I have been self-monitoring for 11 years now. I had to buy my own test machine (with GP's permission) and so far I have received all my strips on prescription. I am in the Worcester Acute Trust area.
Thanks for responding. I am glad that you have been able to get your strips on prescription, long may it continue. At the moment people do have to purchase the monitor themselves. However Roche Diagnostics have applied for reimbursement, if successful that would mean that the monitors would be available on prescription.
The Department of Health are looking into it. There may not be a quick response but at least it is being considered.
It is good to hear of areas that do supply the strips as well as those that do not so please keep your responses coming in.
I have been self monitoring for almost 2 years having bought my own Coaguchek machine and have been refused testing strips on prescription from my GP. I have tackled my CCG, Dorset, with a list of reasons including research and NICE info as to why I felt they should be prescribed but have been unsuccessful in changing their policy. If I lived one mile west I would be in Devon and able to have strips on prescription!! It's the lack of equity as well as everything else which is frustrating.
Sorry to hear that Lizzily, They`re all Skint; going under slowly and therein lies the problem. Cuts,Cuts,Cuts. Using Locums, swopping practice nurses around, You name it. Our practice amalgamated with another as survival is the answer.
I have been self testing for 8 years after buying my own XS device. Originally I got my test strips on prescription but when the CCG took over from the previous organisation they deemed that the strips would no longer be available. I contacted the CCG (Worcester Health Authority) and had discussions with my GP. I was told that as I am considered to be under the control of the practice for my monitoring I wasn't entitled to free strips. Then for about 2 years I purchased my own strips but when NICE published their findings supporting self monitoring I again contacted my GP and it has been decided that I cannot have test strips on prescription, rather I get them directly from the practice.
Thank you all for your posts. Please everyone do let us know if you get your strips on prescription or whether you have to buy them, or if the number you can have is restricted.
The only way we can change things is by building an accurate picture so we show MPs, Government, NHS England etc and make a case against inequality.
Hi I am new to this . I have been self testing since 2010 and have always got my test strips on prescription .Now they are saying they are not available on prescription ,something about medical commission won't allow them. I'm from Huddersfield. I had a aortic valve replacement (mechanical) in 2007 and am on warfarin for life .
Mulberry House Surgery Southampton have been very good throughout and prescribe the INR strips for me. This saves their nurses who are in short supply having the bother of it. I have bought them in The past at around £80 for 24. From Roche Labs. The problem is that the surgeries have a tight budget to adhere to and these strips are quite expensive. You should get them prescribed though as it saves their nurses time and appointments. The trouble is that with idiots like that Hunt guy in charge the NHS is slowly under collapse and this is beyond argument !!!!. I need to see a cardiologist again re coronary artery trouble but some hopes!!. My GMP at Mulberry House is very knowledgeable and thanks to him I am still alive and OK at the moment. I may have to get referred privately again. This after paying over £133000 in final Tax when I sold my business. The government have plans to spend £300 Billion over the next few years on armaments so it is a good thing that the UK has plenty of money !!!!. There goes the NHS. Goodbye. When in hospital last I had to supply insulin to the ward at the weekend as the Pharmacy had none. It is not my doctors job to subsidise the hospital. Sorry to tell the truth. Regards, Mike.
I am under NHS South Reading Clinical Commissioning Group southreadingccg.nhs.uk/ who commission the Anticoagulant Clinic at Royal Berkshire Hospital to test and monitor patients.
I have had a lot of difficulties with support for self-monitoring because my local CCG and Anticoagulant Clinic are strongly opposed to self-monitoring, unless you are physically unable to get a blood test (then they supply monitor and strips), and it is their policy to 'not support' self-management.
I have been on warfarin for 20 years with a prosthetic heart valve. I occasionally travel for work and have found self-management to be hugely beneficial and reassuring. I have now been self-monitoring with a Coagucheck XS for 12 months and self-managing for the last 9 months. So far, I have purchased the monitor and all test strips myself.
I had become extremely concerned about my INR and OAT because, whilst tested and managed by the clinic, my INR results were often dangerously out of range (INR over 7 and under 2; target range INR 3 - 4). In the end, I just refused to attend the Clinic and self-managed until I had enough data to present a comparison of my results during self-management (from .6 under to .2 over) with the Clinic's management (>1.5 under to >3.5 over), along with abstracts from the NICE Guidelines, to argue my case.
I have had several discussions with my GP and the Clinic, and one meeting with a consultant hematologist, about self-monotoring and self-management. Some of the Anticoagulant Team at the Royal Berkshire Hospital have been quite rude, and one phlebotomist in particular, told me that they had tested these devices and "got wildly inaccurate results, and, any GP practices or clinics using them are putting the lives of their patients at risk!" The hematologist was considerably more restrained, but still said he believed they were not accurate enough and wanted me to continue coming to the clinic for monitoring and management at the same time as self-monitoring. However, I did my research and discovered that the Coagucheck XS monitors are comparable to lab testing, with any discrepancies being clinically insignificant (I think that's the correct terminology).
My GP is now supporting me, however, prior to getting her on my side, I received several letters from the Clinic and my GP telling me I was putting my health at risk and prescriptions for warfarin would stop unless I started attending the Clinic again. In fact, my GP reduced my tablet quantities for a period of four months, requiring more requests (and expense) for repeat prescriptions from me, but I now get full prescriptions again. Furthermore, my GP was clearly frustrated when, due the number of letters sent by the Clinic recommending that my Warfarin should be stopped, she couldn't find a letter from a consultant that she wished to discuss with me.
I feel there was a strong element of "the computer says no" and it wasn't important what is best for me, more what is easiest for them. I feel that the CCG's and Clinic's policy has put my health at unnecessary risk and any efforts by AntiCoagulation Europe to educate them are greatly appreciated.
I get mine on prescription but occasionally I buy a box from Roche so I am not too much of a burden on our skint surgery. So far so good. They are about £78 for 24 strips.
I bought my own machine and get my strips on prescription. I am allowed 3 pots then i have a review and i always get a prescription for more. I test my I.N.R. much more frequently than it would be tested at clinic so i sometimes buy my own so i dont annoy them! Recently the surgery sent me a printout showing i had been in range 91% of the time. Im sure this was because of self testing. I am fairly sure i am the only self tester in tje practice. They might not be so generous if there were more! I live in South Wales.
Today I saw my GP on the 'routine follow up after hospital discharge' appointment; in my case it was a mechanical heart valve replacement and CABG at St Georges on 26 May 2016.
As a result I have had to change my anti-coagulant from Apixaban to the 'Warfarin regime' and having done my own research and with the blessing of the Frimley Park anti coagulant team, i purchased the Roche Coaguchek system, and was anticipating doing all my own tests for submission to the 'team', which would save processing time/costs etc. The FP team said I would need to get my GP to prescribe the test strips under an 'FP10' procedure.
I put this to my GP and was refused, saying they were being paid/paying for (I was not clear which) the testing regime I now was under.... even though they boast they have their own 'in house' finger prick solution.. (I assume Roche Coaguchek). This is an extract from their website....
INR (Warfarin Clinic)
We now offer a simple fingerprick test to monitor your INR levels (International Normalized Ratio) if you are taking warfarin. The results are immediate. These are held 4 days a week and will save you having to go further afield
for your testing.
The galling thing was that I was also told I needed a 'fasting blood check' which I was to book at Reception. The earliest appointment for that was 13th JULY. (today is 23 June). If I was to walk into the Aldershot Centre for Health, it would be done almost immediately!
To my mind a common sense compromise might be for my surgery to supply me with a quantity of test strips, the same number that they would be using on me, were I to attend their 'INR (Warfarin Clinic)'. It would also not be adding to the inordinate waiting list for a 'nurse appointment' for a simple blood test at the surgery.
I would be very grateful for your comments, in due course.
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