I have been self testing using a Coaguchek XS device for the last 5 years and test on average every 10 days. I also see an INR nurse at my GP practice every 6-8 weeks.
This has meant that I have been able to control my INR whilst travelling world wide for both work and pleasure as well as having several minor operations where I have had to come off Warfarin and self inject with Clexane.
This has worked well up until this week. I asked for a repeat prescription for the test strips and have been told that as the CCG has taken over from the PCT they will not provide the test strips on prescription. This appears to be because they are paying the GP surgery for my INR care.
Has anyone else come across this issue?
Written by
IanredUK
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Yes, regrettably this is happening more and more. AntiCoagulation Europe can contact CCGs and asks what their policy is regarding self-monitoring and ask why they think it is beneficial to stop a patient who has been self-testing for some years and hopefully persuade them to change their mind.
Can you let me know which CCG, either on this forum or by replying privately to me at anticoagulation@ntlworld.com and we will try to help.
I am having the same issue but my cat will not at all prescribe coagucheck test strips and I am also on a very low income so I am struggling to pay for them as I need this machine as I am a very hard stick to get blood out of I am not sure what ccg I am under but I am in Suffolk please reply to dainawilson24@gmail.com
I will send more details via e-mail. I have raised a complaint with the NHS and it is being handled on my behalf by an ACU and the will liaise with the Wyre Forest CCG - plain English doesn't seem to apply to the NHS i have no idea what an ACU or a CCG is. I have been promised a response within 25 days and will post here when I receive it.
In my case I also bought my own machine. But I use an INR nurse at my GP practice that uses the professional version of the Coagucheck XS machine that I use at home.
It appears the argument is that the CCG pays an annual fee to the GP practice for my blood tests with the nurse they will not pay for my self testing as well. However from experience I know that my INR varies due to travel which is required for my work and also for the control of INR before and after surgery and 6-8 weeks between my appointments at the surgery will put me at risk.
Warfarin could not be controlled properly, and I could never get to an INR rate that offered me protection. I wanted to move to one of the new novel bloodthinners, and after much convincing from my part, I eventually was prescribed Dabigatran. Could you not be moved away from Warfarin completely and onto something else?
Unfortunately in my case I cannot come away from warfarin as no other drug works with metal heart valves. But my Drs still give me prescriptions for strips. I live in Scotland I don’t know if England different. But I agree if you can get off it go for another one as it’s a nightmare if you need a op on warfarin.
I think that the latest drugs are for Atrial Fibrillation. I need Warfarin as I have a mechanical Aortic Valve so they are not applicable.
The newer drugs are quite expensive compared to Warfarin and I suspect that it would also be more expensive than Warfarin and the cost of the test strips.
Yes I have mitral heart valve I asked if there maybe would be a drug made for us but was told probably about 25yrs so you & I are on it long term. Mum got apixaban for AF.
I met with the ACSMA (Anti Coagulation Self Monitoring Association) at a Conference recently. They were most helpful and we now have a Coagucheck for my husband as we are going travelling and he will self-monitor. One of the large quotations on their stand was from one, David Cameron, who said something along the lines of "Self monitoring is better for the individual and will save the NHS £62m a year" - perhaps you should take the issue up with him and/or Jeremy Hunt.
It seems a nonsense that you can't choose the method that suits you AND which saves money for the NHS
That site has been Inactive since early 2020. If you want to see what they were about you can use the Wayback Machine: eg. web.archive.org/web/2017093...
Actually the new drugs are only around £2 a day and aren't strips around £50-80 per month depending on brand and how often you self test. In fact the NHS has evidence to show that self testing isn't actually cheaper than normal testing and
I think NICE are going to look at this. Of course this doesn't take into account the reassurance that self testing provides you and others.
However, I have to say it does seem that you are asking to have your cake and eat it by being tested by the NHS so regularly and then by yourself. Most people have one or the other. As the new drugs are no good for you maybe you could ask to stop going to the nurse if they cover the cost of your strips. The people I know who self test for heart values only have a check up with a INR nurse 2-3 times a year rather than every 6 weeks!
Oh and I would take the Cameron quote with a large pinch of salt as you could never realise that saving as the NHS will never close down all A/C clinics and could never afford to supply INR monitors and strips to everyone. In fact the drug companies quote even larger savings if everyone who could be moved to the new drugs were!
Plus just gone to that ACSMA website and you do realise that it is "supported" by Roche who are just one of the companies that make and supply monitors and strips! Wouldn't say that's a proper alliance if it doesn't involve other manufacturers or suppliers!
Darksteele. Lets get some of our facts straight shall we. The strips for the most common test machine, the CoaguChek, cost the public £67 for a normal years supply, testing say once every 2 weeks. They will be cheaper to the NHS.
The NHS has a gold standard or expectation that at best patients in their care will be in therapeutic range of INR no more than 60% of the time whereas self testing patients are usually in range much more than this; about 90% of the time in my case.
NICE are already in the middle of a study to consider approving several makes of self testing machines on prescription to long term Warfarin patients to improve patient outcomes and reduce NHS costs. Their project is expected to conclude and recommendations published early in 2014. I am a member of their diagnostic committee overseeing the project and can give no more detail at present other than the above for reasons of confidentiality.
The NHS is already actively working on how to promote more "self caring" in the patient community and I have been invited to participate in one of their working parties. It works well for folk with diabetes so why not others too. There is no problem in my mind if this is to release funds for better use with those who cannot care for themselves.
You would be quite correct to say that Roche are supporting many projects which examine the benefits to patients of using their equipment but in fact so are most of the other manufacturers too. Yes they are a profit making, commercial, manufacturing company! What is wrong with that? The key issue as far as I am concerned is will the patient and his/her family benefit from these projects and have a better life as a result. The ACSMA initiative is substantially to the benefit of patients and if Roche and the others who are supporting the initiative and making it possible also get benefit then I would certainly sat that this is a very proper alliance of mutual benefit. (and no I have no financial connection with Roche whatsoever but am a patient who has benefitted greatly from the help of the private medical equipment industry)
I don't use strips so was only repeating what I had heard and so am happy to be corrected on this. Thank you. I am not against self testing, far from it. My warfarin service would not let me self test as they only had 2 people out of 4000 doing that! I do think that self testing should be available to more people who wish to take control of their own care and I also believe that access to the new drugs should also be opened up to those patients who are suitable. It really annoys me to read these stories of people still being injected and worrying about their INR levels on warfarin with a clot for DVT and PE when there is now other safe, effective and simple oral options.
Also thank you for confirming NICE are going to look at this and we will know once and for all if self testing is actually cost effective in terms of NHS resources. There is both positive and negative data if you search so some clarity is needed. Of course, I feel that there are a lot of patients benefits and hopefully NICE will take them on board.
I am actually correct in saying Roche are the only commercial supporter of the ACSMA! I do not have a problem with commercial organisations supporting charities and causes but to set up a group and call it an Alliance could be viewed as a little dishonest in my book, especially when it is focused on achieving higher sales of your monitors and your strips. Is it open to all manufacturers? Have they been approached? I think ACE should be careful here as this is when bias can creep in. Read any Blog or book from Dr Ben Goldacre to understand why I am cynical here.
As anticoagulant patients we at long last have a number of new and exciting options for our care with which to discuss with our doctors and nurses and I for one look forward to the day I don't need to take a drug and stab a needle into my finger or vein just to tell me if it is working correctly or putting me at risk of a brain bleed or leaving me unprotected.
I am happy that you have found a way to manage your care and are fully involved in that decision process but remember what is right and works for you may not be someone else's cup of tea, 2 sides and all that!
I now have the response from the CCG which states that the test strips should be provided by the organisation that supports my monitoring. Therefore no prescription is required.
They then go on to suggest that I am provided with sufficient test strips that I may need before my next visit. Which given the nature of the machine I have would prove difficult as I would also require the associated chip for the batch of strips that they were taken from.
I have sent the response to my INR nurse and will discuss this at my next visit.
Well done Ianred that is progress. Take them at their word and ask for the chip and strips. Let them know that many of the others who self test manage to stay in therapeutic range up to 90% of the time although they tend to test more frequently, and ask how this compares with their experience. The NHS expectation is only 60% of the time.
When I was first started on warfarin the prescribing consultant mentioned the possibility of self monitoring. However when I was transferred across to my local anti coag team they said my condition made it unsuitable.
Even weirder that on some occasions they have themselves tested me with one of these machines.
I asked a while back about self testing and was told it was unsupported in my area. Today after a scary moment and needing another test I asked again. I asked my GP who said it was up to my anti coag team. They in turn tried to pass the buck back to my GP. It seems nobody within our health service wants the cost of patients anymore, or is that just too simplistic. Patients needs are an afterthought.
Are you in England? The reason I ask is I self monitor it cost £300 8 yrs ago I have a metal heart valve and do only warfarin works but my Dr prescribes the strips I also Heparin injections to keep at home incase my INR goes to low.
Yes I'm in th UK. I purchased my machine in 2008 for £500. During the last few years my GP practice has changed and is now 1 of many in the area that have joined forces. I used to get my strips my practices stock as the strips were the same. However, they now have the later version of the machine which uses a different strip so i know get strips on prescription.
I am getting my test strips from my GP.They leave me a supply of 24 at the reception at the surgery ,thus not having to issue a prescription but using their own supply (which they would use if I went to the surgery for my tests) It works well,and I am sure your GP could find a way for you to get your supply.
The problem seems to be with how the budgets have changed. The budget seems to have been split so providing strips costs the CCG and Surgery more than sending samples to a lab. (Well on paper as they have some hidden charges they ignore) Of course the overall cost of sending samples off costs the taxpayer more but not the GP. So we have GP's trying to maximise their surgery's income at the expense of the patient and taxpayer overall. Great isn't it?
You can throw into the mix a bit of fear from the GP of losing control + fear of the unknown that it might increase their risk of negligence litigation. The NHS doesn't have a sensible way of allowing patients to accept responsibility - I'm quite prepared to sign waivers etc.
I'd be prepared to go it alone but I need a prescription for Warfarin!
Ianred. You are not the only one who has been told by his GP that they are prevented from prescribing strips by their CCG. This is not true. The CCG can advise on policy and give guidance but the final decision always rests with the GP. It may be, if they are running an INR testing service, that your GP is getting paid to carry out the test but would have to finance your prescription from their own budget but it is against patient best interests to take that decision on such financial grounds and it is dishonest of the GP to blame the CCG. It is also very unreasonable if they have been prescribing them for 5 years. Frankly I would confront your GP again and challenge him but if he won't relent, find another, honest GP.
I was told after lengthy discussions that i would not be able to get a prescription as the CCG would not allow that to happen so for the last 18 months I have purchased my own test strips., however with the recommendation from NICE that there were significant benefits in self testing i sent the papers to my INR Nurse and was told 2 months ago by my INR Nurse that I would now be able to get the strips.
Since then my INR Nurse is on extended leave and the new nurse knew nothing about these discussions. As I had run out of test strips I asked for a prescription and was ;phoned by the practice manager stating that they had consulted a pharmacist who stated that I was not entitled to receive a prescription for the test STRIPS.
I thought I was back to square one! However I then received a further call from the surgery asking me to make an appointment with the GP who deals with INR ( i actually already has an appointment for my annual INR review where I was going to take along a print-out of the NICE recommendations).
During this consultation I was advised that he could NOT give me a prescription for the test strips rather I had to order them from the surgery and gave me 24 test strips. I future if I require more test strips i have to request them from the surgery and they will source them for me. So as far as I am concerned after more than 2 years i seem to have won the battle.
For those that want to try this approach themselves see the following links
Good Luck, I persevered and got a result that seems to work for Both the Medical Practice, the INR nurses and myself. I self test roughly every two weeks more regularly where there may be a chance of my INR changing e.g. holidays and chnages to other medications and phone in results if they are out of range. I see the INR nurse approx evry 6 months ands annually take my machine and we compare results at the same time. It has always been within .1 of their INR.
Use the NIce report as listed above and get this to your INR person and your GP and argue the case.
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