I am doing a poll on Self-testing and... - Anticoagulation S...
I am doing a poll on Self-testing and Self-dosing and would like to know why people don't self-test?
My elderly Mother would not have been competent to self test. She would not have fealt comfortable and secure on Warfarin without the reassurance of frequent professional testing and control of her warfarin dosage. For her, an elderly lady living alone, the regular collection by NHS transport and visits to the anticoag clinic were an important social event to meet people which she looked forward to.
I agree that not all warfarin users will be able to sel-test due to their lack of dextraity. There is plenty of evidance to show that patients who self-test spend more time in their INR range. However, you have hightlighted one of the main reason that many enjoy the social event. I have two friends in their eighties who are quite competent to self- test and one test her diabeties but they enjoy going to the clinic!
Thank you for taking the time to reply to my question a poll is being processed.
I have asked if I can self test and was denied this option. I am a retired chief executive and have all my faculties and still denied this option. I think its do with your PCT who decided this policy.
Anyone could self-test as long as they have the dextraity but you would need to buy the monitor yourself cost about £300 but there is a free interest loan. The test strips can be obtained from your GP as these are on the drug tariff but some PCT are refusing to allow GP's to issue them due to cost. ACE is working towards changing this policy as evidance shows you stay in your theraputic time range much longer and have less complications i.e. blood clots and bleeding.
I would recommend anyone who wants to self-test and can afford to buy the monitor to make a simple graph of their reading. I used excel and did three lines one shows your lower theraputic range, one shows your mean range and one shows your maximum range. Plot the date and your INR reading on the chart and work out how many times you are in theraputic range, how times your are below or above and show this as a percentage. We know from current data that most warfarin users who don't self-test will have a theraputic range of 60% but are offend left for weeks before the next test, therefore they don't know how long they are in range. Warfarin users who self- test weekly can acheive a theraputic time range of 90% or more but would depend on any drugs or food change. If you have a theraputic range of less than 50% you would have a good case to prove to your GP that you are at more risk from complications, as you do not spend enough time in theraputic range. I have had three serious pulmonary embolism and one was due to being sub-theraputic. I now feel more safer self-testing, can test at any time and anywhere. Best thing I ever did.
Anyone who would like a copy of the excel spreadsheet to plot their INR reading should contact me at peveshome@btinternet.com requesting a copy.
Hi
I self test, but my elderly aunt does not, mainly because the thought terrifies her and she does panic.
Some PCT's won't fund the strips though so that can be a problem
It is great to hear you self-test, do you know how many times you are in therapeutic time range, see my reply to Gizmomavan!
Good morning
I have been self testing for about 7 years now and in agreement with a previous correspondent I achieve a 90%+ average in range. Self testing also is a great help when travelling abroad. Provided you have reasonable self confience, the dexterity to use the machine and the back up of your GP it is straight forward and gives me peace of mind. As an aside I only go the GP clinic every 70 days to confirm.
Hi Rassociates, this is great news to hear and supports what you and I know already know, that self-testing is good for your health. How did you work out your percentages?
I completely agree with the previous response. There is a wide spread lack of knowledge in my local medical area regarding self testing. I am, as far as I know, still the only person to do it with my practice after more than seven years.
I started self testing when my yellow book was regularly recommending 16mgs per day as my stability dose is 5.5mg. I thought the system was dangerous for me.
I have updated my self purchased Coaguchek and my PCT supply the strips, I should also ask for lancets but supply these myself. I was delighted to see leaflets for Coaguchek in my local clinic recently but feel that this is a decision left completely to the patient and some feel that this is because they will increase the risk to themselves rather than lessen it, which deters them from further investigation.
Last year I had a second valve replacement and my Consultant said that he was delighted that I was self managing/testing and that he wished all his patients were. As regaining stability after the heparin/warfarin changeover was prolonged I was allowed to go home on the basis that I self tested and he managed the dose until stable.
Self testing and management has greatly improved my quality of life, I now have assurance in my health and a feeling of controlling it while bruising is minimised.I used to waste literally days when at work sitting in the clinic awaiting testing, now it takes a minute in the comfort of my own home.
It might be worth considering this question from the other angle? what do you need to be self testing?
some possible answers:
you know where to go for self dosing and testing information
you don't need the social contact of clinic testing
your work is time intensive
you have the mental capability, no TIA's, dementia, poor memory, etc.
you appreciate the benefits
you understand what is lacking in the current processes, e.g. immediacy, knowledge of your personal body processes and reactions
you can afford the equipment
you are having problems with the clinic testing processes
you are changing your eating/sleeping routines and are away from your clinic e.g. on holiday
you can obtain strips on prescription
you have the confidence to manage yourself
a local support nurse who is pro self dosing/testing would not be essential but would be a valuable luxury, for queries
support from local medical staff, not essential but another luxury
Hi Armitaged
Many thanks for your excellent reply to my questionaire and your help to improve the awareness and benefits of self-testing. You can see from the response so far that many members are interested in self-testing and are providing excellent data for the poll. ACE are aware of this poll and Eve Knight is helping to produce the poll and wevwill take yours and other members suggestions forward.
Please let me know if you monitor your INR and what percentage you achieve in therapeutic time range?
Hi Firemansam
Thanks for your comments. Firstly, my range has always been 2.5 to 3.5 but I have been informed by a Consultant that it would be 2.0 to 3.0 if the delays of the official system were not present! I found this very interesting as I would always prefer to have the safest low reading to avoid bruising, etc.
I record my levels on a calendar and test on a twice weekly basis, however if I am out of range I may check every two days until stabilised. I am rarely out of range so I do not record in and out %'s. If it would assist you for me to look back at my records and calculate this I would be happy to, just let me know.
When my 19 year old valve was replaced last year there was no evidence of clots forming, although this can also be due to the type of valve used.
Sorry armpitaged for not responding sooner to your reply but it slipped through the system. Not sure what the consultant meant by this comment maybe you could explain this? It's good you keep a record but like you said you can't easily work out your therapeutic time range. If you send me your email l'll send you the excel spreadsheet free.
I have been on warfarin for a number of years but my GP has never suggested that I should self test. This might be because of other problems, when I have had to stop taking warfarin for some days and as a result my "readings have been all over the place".
I have been on Warfarin for about a year. I was not aware you could self test, but I see from here a machine is expensive. I am left for nine weeks plus, between tests at my surgery, seems to much to me. I'm sure my gp would not prescribe testing strips!
Hi woodge,
You are the ideal candidate for self-testing. I agree the monitor is expensive and hopefully the information provided by the members will help to find a solution to this major problem of cost of monitor and test strips. I don't recommend monitors but one company Roche Coaguchek (0808 100 7666) can offer an easy payment plan over 12 or 24 months, which come with a supply of test strips. I would appreciate any feedback from anyone who have used this method of buying the monitor. It was not available when I brought my monitor in 2009 and cost me £500. Now days the monitor is a lot cheaper. ACE members might also like to check the new ACE shop at (shop.coaguchek.com). I would appreciate anyone using the ACE shop to let me know how they found it!
Hi wasp,
There are proberly a number of reasons why your GP has not recommend you self-test, one you would have to buy the monitor and two he would have to supply the test strips (subject to your PCT) and lack of awareness of self-testing. Your reading being all over the place would be an excellent reason why you should consider self-testing on a weekly basis. I advise anyone who has INR reading all over the place to keep a simple record of their time in therapeutic range. See replies to above members. Excel is ideal for this and you could take your finding to show your GP your concerns that your present arrangements for self-testing is not working and is putting your well-being in jeopardy.
I fought with my haematologist for three years (with written support from my GP) to let me self-test and he just dug his heels in and said no! However, last November, my health authority contracted-out the anticoagulant clinic to a neighbouring health authority; this resulted in me transferring from a service that operated five half-days per week to a service that operated one hour per week. I went to see the haematologist and informed him that my life had become impossible as a result of this change - he caved-in and agreed that I could start self-testing. I have been self-testing and self-managing since then; I email my INR and Warfarin dosage to my GP once a month, he conducts a quality control INR every six months just to make sure that my results are accurate. I have my life back!
However, I have a friend who lives a five minute walk away from me but comes under a different health authority. Her GP fully supports her self-testing but the PCT refuse point-blank to allow the GP to prescribe the testing strips. Considering that self-management of long-term conditions is a NHS priority, I find the stance of this PCT astonishing.
Hi Balach,
That is great news and many members will be interested in your case. It just shows that if you are persistent enough you can win, albeit from a change in your anticoagulant clinic. We must continue to press the PCT to issue the test strips on the NHS. We know that patients who self-test are less likely to suffer further blood colts or bleeding and save the NHS from costly medical emergencies. Is it possible you could email your friends PCT at (peveshome@btinternet.com) and we will add them to our list.
I don't self test because of the cost of the machine - I self dose when abroad. I would love to self test when travelling as it would save so much time and trouble but I can't afford the machine!
I'm sorry to hear this but I know the cost of the monitor and test strips is a major problem and why we are carrying out this poll with the help of all warfarin users to be able to feed back our concerns.
How do you check your INR abroad?
How could we help you and many other patients who would like to self-test?
I go to the local hospital - I have travelled widely in Australia and the far east - am off to northern Thailand again next month - never been a problem and Virgin travel insurance pays - well they did last time when I drove thru outback Queensland.
The PCT should loan machines to save clinic time but I am very unstable on my warfarin. As of yesterday my INR is 5.2 way over target for no apparent reason ;-(
I was going to say I will see you in Thailand but realised we don't go until Christmas! Interesting to know that Virgin Travel paid for you INR test and will interest a number of members who travel aboard.
Your suggestion that the PCT should loan monitors is an excellent idea and I know of one PCT in Cambrideshire (Hinchingbrooke Health Care) who do loan monitors for people going aboard! I don't know your therapeutic range but 5.2 seems high. Some warfarin users think that because their INR test is within range on the day of the test they are OK. However, we know that many warfarin users are left for weeks between their INR tests and they don't know how long they are in their therapeutic time range until their next INR reading, which might be OK, too high or too low i.e. sub-therapeutic where the warfarin is not doing it's job.
Hello, don't know who or what you are, but we do need help, yes most of us can afford the £299 for the machine, but we do need help with the cost of the strips, after all if we were restricted to one test every two weeks the cost would be minimal and also most of us spent our years paying in to build the NHS, it is not that we are expecting too much from our system, I feel that those who are on Warfarin etc., should get a little help, I have purchased the machine and maybe one day it will be decided that we should have help with the test strips.
Below is an extract from a speech made by the Prime Minister David Cameron last December. it was his Life Sciences speech. Underneath that is an extract from a press release issued by the Department of Health in March 2011.
We should all write to the Prime Minister Office telling him that fine words are one thing but the reality for patients is very different and ask what is he going to do about it.
"But the most crucial, the most fundamental thing we’re doing is opening up the NHS to new ideas because time and again we’ve heard the same thing from industry. We’ve got the treatments that work, we’ve proved they’re safe, they’ve been approved but we cannot get them into the NHS. In fact many in the industry say we can’t even get to the negotiating table. For instance, there is a finger-prick blood test that allows patients on anti-coagulation therapy to self-monitor their blood clotting time. It’s effective, it’s convenient and in the end it would be much cheaper for the NHS but still today less than 2% of the 1.25 million people in the UK on long-term anti-coagulation therapy are self-monitoring. Now this is happening with a whole host of drugs and treatments. It is a massive missed opportunity and in so many ways I believe it’s actually out of kilter with the whole spirit of the NHS because this is an organisation that has actually, over the years, thrived on innovation. When the link between lung cancer and smoking was first made, the portable defibrillator was first used, the CT scanner was first operated – the NHS can do innovation. This is the best of the NHS – resourceful and creative. Now we’ve got to take the best of the NHS to remedy the worst of it where it is bureaucratic and slow to take up new ideas."
"The new, modernised NHS will improve the lives of people with long term conditions by:
• Giving them more support to self care – for example providing asthmatics with new technology they can use at home to check their lung function so they can pick up problems quickly before they get so bad they have to go to hospital. Or empowering people to self manage their own clotting therapy – a Cochrane study found a 50 per cent reduction in the number off blood clots and a reduction in deaths."
Why can't we have a petition calling for all PCT's to supply strips?
Excellent idea and will follow that suggestion up! Watch this space!
Hi warfarin,
Thank you for that information, it couldn't come at a better time as I was just going to research that point. Well timed!
I'm not sure if new patients are aware that self testing is available. My hospital/surgery never gave me the option, It was only through researching the Internet and linking with ACE that I became a self tester. I've been very lucky as my surgery give me fantastic support but I'm the only self tester there. The surgery has no information or leaflets on self testing so not sure how aware patients are.
Hi Donnac70,
This is an excellent point and one worth investigating further. Thank you.
Part of the problem is that medical professionals are very protective about their 'specialist knowledge'. They don't like the idea that some patient or other can do a simple blood test and then decide what dosage of warfarin to take! Strange really when patients with diabetes have been monitoring/managing their blood sugar/insulin for many years. My own INR results after 6 years of self testing and dosing have been far closer to my target level than anything managed by my doctor/clinic before.
Clinic testing every six weeks or so is simply not good enough. Your INR could be either on an upward or downward trend and you would not know about it for maybe weeks and weeks until the next INR test. It's far better to take control of your INR and warfarin dosing, test weekly and adjust your warfarin accordingly. It takes very little time to realise that only minor adjustment of warfarin is required to keep your INR within range. I also like to eat and drink what I like and I adjust my warfarin as necessary.
My doctor is not particulalry interested, but he does provide me with my PT test strips for which I thank him!
As for the cost of the machine, its cheap when compared to the ease of testing and peace of mind it gives that you are in control and on target. Cost is very little when compared with expensive travel tickets around the world! I travelled for 12 weeks early this year and my INR stayed on target the whole time.
Well said Tipper and I hope you enjoy the free excel spreadsheet, it least you will now known what percentage you are in range. Let me know how you get on with the excel spreadsheet. A number of members have requested a copy and have had some positive feedback that it works fine and it's good fun!
We live in Spain and self testing has never been offered to my husband. My late father used to take Warfarin and he was never offered a self testing either - he always had to trawl down to the local hospital or to his doctors. If PM Cameron thinks its going to save money then why don't the NHS do a deal to get the Roche Coagucheck machines at more affordable prices.
Most people in the UK who self-test buy their own monitors and get the test strips on the NHS but there is a proposal for patients who want to self-test to be provided with the monitor and test strips but don't see this happening for some time. As many people who self-test will know they achieve a better therapeutic range then the Gold Standard of 60%. Your husband needs to work out his therapeutic range and I can provide an excel spreadsheet that can work this out, just email me @ peveshome@btinternet.com. If your husband is only achieving around 60% than he could put a case to his doctor on the basis that he could reduce his risk of having a blood clot by self-testing.
I would love to self-test but cannot afford to buy the monitor or test strips if you can't get them on the NHS.
Hi Becky1222,
It's a shame the Health Minister does not know the advantageous and reasurance of self-testing and the cost savings to the NHS. I am currently travelling Tailand, Malayisa and Singapore and my INR has been extremely erratic, which is not surprising with the changes in food and time differances. Goodness know what my INR would be without me self-testing!
You don't say what your INR percentage is and I can help if you don't know by using my excel spreadsheet. It would also be useful to know why u take anticoagulants?
With some basic knowledge u can put a case together to show your GP that your anticoagulation therpy is not working and you could achieve a better therapeutic range by self-testing and self-dosing. There are a number of members who would more than be willing to help in this matter, including ACE.
I have asked to self test several times, but my GP absolutely refuses. As a result, I end up having to take a half day from my business every week or two as my levels are all over the place (due mainly to the PCT regime that they only prescibe 3mg warfarin tablets, no others), so no accuracy of dosage - Very frustrating - I would like control of my life, not to run it around the demands of my GP.
I have asked to self test several times, but my GP absolutely refuses. As a result, I end up having to take a half day from my business every week or two as my levels are all over the place (due mainly to the PCT regime that they only prescibe 3mg warfarin tablets, no others), so no accuracy of dosage - Very frustrating - I would like control of my life, not to run it around the demands of my GP.
Hi Rainey999
This is a major problem for many members when the GP don't understand the patient needs. Like Becky 1222, I need to know more about your therpy i.e. what is the percentage of your therapeutic range? Why do you take warfarin? To get your GP to understand your needs you need to supply evidence that your therpy is not working and only achieving 60% in range is not very good and many experts in anticoagulation knows this. This is why drug companies are producing new anticoagulants, which will do away with the need for the INR test. I hope this helps but you need to persist in the right to self-test and self-dose for your well-being and quality of life. This may mean taking your case to the PCT.
Less than 60% in therapeutic range due to the regime of only prescibing 3mg tablets - end up with the see-saw effect.
Been on warfarin for 30 years following 2 x DVT following accident at work (treated as a sprained ankle - after DVT, found to be triple stress fracture). Ex teacher, company director....(so some would say relatively intelligent and compus mentis??)
Hi Rainey999,
I have an free excel spreadsheet I can send you which works out the percentage of your therapeutic range and shows a graph, which you could show your GP. Ask for a referal to go on Rivroxaban and to see a anticoagulant haematologist at the hospital. It might be best to write to the senior GP and if no response in 10 working days send another letter with a copy to your PCT PALS. It would be better if you can prove that their therpy is not working and anyone only achieving 60% or below would have a good case. I know you have had your question answered by Armitaged and support his advice. I know ACE is aware of this failure by some GP's to follow PCT guidance and encrouge more people to self-test and self-dose. Members have said time and time again the benefits, lets hope the new anticoagulants provide the protection without the need for the INR tests.
Don't give up but you might have to fight hard for your rights.
I'd love to self test but can't afford the machine because I'm on ESA benefits.
I have been self-testing for about a year. I purchased my own Coaguchek and obtain the strips free on prescription. My GP did write a shock horror note to me about the cost of the strips - they are £2.50 each. in my view the cost is a false argument because when I used to go to the GP to have my INR tested the nurse used the same strips so same cost plus the GP hadto pay the nurse. So self-testing is not only more reliable, it is also less expensive.
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