Warfarin Blood Strips

[DNdn]

High everyone, I thought there might be others who are in my predicament, but not the amount that have aired their discontent about being refused blood strips on prescription.

Due to a divorce; rather than give my half of the house to a landlord in rent within 10 years; I bought a motorhome and travel (at the moment) around Wales.

Last year I did Mid and North Wales, and I am sad to say I must have cost the NHS around £4,000. I have to make an appointment at a surgery which is always arduous. First you have to make an appointment (1 to 2 weeks) then you have to return and wait to see a doctor. He takes your blood (sometimes a nurse) then gives you a check up. It involves registering as a temporary patient where all my details remain on their computer (I am unlikely to return). This I have to do every time I require an INR blood test.

I require INR testing for the irregular Heart beat and will be on warfarin and beta blockers for the rest of my life. The above costs and details drove me to find other alternatives. Great I thought! And to save the NHS I bought the machine myself (£300). However I soon found out that they would not supply the Blood strips. First the doctor said that I was not being monitored. So I contacted the local hospital who monitor my INR and asked them to send my monitoring details to the surgery. The hospital has been my monitor for five plus years. This they duly did. Now my surgery is saying that the Fax did not recommend that I be prescribed blood strips. I contacted the Nurses at the Warfarin clinic to which they state that they cannot prescribe. Which I already knew.

However I will fight to the bitter end. I am saving an already strapped NHS thousands of pounds, and if I have to I will purchase the strips myself.

So my agenda is to speak to the Nurse that monitors me (off today, back tomorrow) to see what she can do or suggest. Refusal by my surgery will lead to me seeing my local AM/MP. Then the local paper, then to the Nationals. I will make a loud noise on the principle of saving the NHS thousands.

As to the previous contributors. The alternative medications are contentious. Are you aware that there is no antidote to this medication. If you bleed, even on the operating table, there are no coagulates to stop any bleeding. So no operation; and if you are at anyplace which evolves a cut or involved in a road accident or any other blood letting situation, on that medication, you are dead.

And to be fair I was recently told that there is a new medication that doesn't have the issues above. But its new. I have an issue with that, that we do not know the long term consequences. There are people who live well into their time on warfarin and many Pensioners live in excess of their eighties. Proven!

Thank you all. I will keep you posted.

DNdn

[moo196]

Oooh.... good luck with that. I nearly purchased a machine for monitoring, but decided 6weeks was long enough to be away from home for for now.

I has imagined just relaying my readings to the clinic and getting dosages agreed accordingly.

Let us know how you get on!

K

[micran]

It is unfortunate that the NHS is not national, but regional.

I have had a heart attack and have been "On the Pills" for about 13 years, ( about 50,000 of them) I have Stents and A.F. a wonderful Cardiac Specialist suggested that I was a good candidate for self testing, I was encouraged by my GP, bought a meter, was prescribed strips, I have been self testing for about 6 years, my then local hospital had a dedicated anti coagulant clinic, it was so simple, phone in your INR and Warfarin dose was in the post the next day. I have taken my meter to New Zealand 3 times, great assistance there. I have since moved to another area, the response from the local GP "I don't know any thing about self testing and do not wish to know" It took a while to get strips prescribed, but NICE have since decided that they should be prescribed as self testing saves the NHS money, time and is a lot better for the patient, than going to the hospital or surgery for a blood test and then have to wait for a result, self testing gives a result in seconds. I believe that patients who have to rely on blood tests given by hospital or surgery are out of range longer than they are in. Quite often when a patient has a stable INR they are given a longer period between blood tests, sometimes up to 10 weeks, they could be out of range for a very long time. Taking Paracetamol will push INR out of range. Self testing gives peace of mind, is sensible, saves expense to the NHS, and despite the protestations from a minority of medicos should be encouraged. I am 85 in May and hopefully will carry on self testing for a while longer, it is so simple. Self testing costs about £3 a strip, that is a lot cheaper than attending a surgery or hospital... Good Luck, don't give up you will win in the end.

[IanredUK]

Good luck with your campaign. I to have had to battle to get test strips after changes made by the CCG. As you say all the solutions are regional at best or as in my case an agreement with my own Doctors Practice. ( I am given the test strips from their own stock. CCG don't allow a scrip to be issued although I can get the lancets on prescription)

[Lisacharman]

I have also been put on warfarin for life due to having a pulmonary embolism then another whilst on warfarin I have a genetic blood clotting disorder also and various other issues but I was fed up with going back and forth to the doctors surgery sometimes daily I never got past leaving my dose past 14 days because it's never and never will be stable due to no immune system so I am up and down with viral illness so I spoke to my gp about getting my own inr machine which they said yrs a good idea and I get the strIps and I use a different finger pricker device that they use for blood glucose machines it works just as well and the needles for this are also prescribed I did have to prove I knew how to dose my warfarin before they let me loose on my own and if I get into trouble I just call and they support me all I now have to do is go every 12 weeks to have a test on there machine and that is it so I think it's to do with who wants to pay but they are cheaper than some of glucose strIps keep pushing maybe agree to show them you can manage and agree to testing on there machines 12 weekly see what they say

[inverlodge]

My husband has been self testing and self dosing since 2003. Gives him great freedom and good control. Keeps surgery informed and has a monitoring check there occasionally.

[ClickerTicker]

I've also been self-testing and self-dosing since 2003/2004 following a mechanical Mitral Valve replacement in 2002 that put me on Warfarin lifelong. Initially I dosed using an app on my Palm Pilot (don't use that term in Australia!), but fairly quickly relied on my own knowledge and history to judge the dose. In my area (mid Hampshire) I don't think even now there's a facility to call in your own test results and get the dose back - hence the self dosing.

To get started on self-dosing I sent my GP a letter taking full responsibility for doing it - he seemed happy with that and let me go ahead. Best thing I ever did. I normally do ask them to add a venous INR draw at the same time as my annual review and use that as a check on my meter. It's less important now that the later meters (currently Coaguchek S) have inbuilt testing on each strip. With the older generation there was a separate checking kit that wasn't available on the NHS and you had to buy - needless to say the check didn't happen all that often.

Have taken my meter to lots of parts of the world - the few times I had to organize tests before I got the meter were a real hassle, even in this country. No problems with having it in hand-luggage despite the finger pricking needles. Again, with the earlier generation it wasn't quite that simple - the strips had to be refrigerated, not easy when it's 40 degrees in the Aussie outback. I used to carry the strips in a small stainless steel vacuum flask with ice in it - that also used to go in my hand luggage and only once was it queried at airport security (how times have changed).

My INR has a tendency to go high very quickly when I'm on holiday, I've put it down the fact that I eat a large amount of green stuff at home and it's difficult to maintain that whilst away. Without the meter I'd be in trouble, even with it I've had my INR jump from 3.5 to nearly 7 within a week or so.

Never any trouble with the Coagucheck Strips and Accuchek Needles on prescription - I do try not to waste too many though, don't want push the bill higher than it needs to be. I test weekly. Definitely persevere with your efforts!

[Verve]

I'm in Canada and I haven't heard of Warfarin strips. I had pulmonary embolisms last summer and I was given a choice by the specialist to either have Warfarin injections in the stomach or take an expensive pill called Xarelto. I opted to try the injections and "OUCH" very painful in the abdomen each day. So while in the hospital I tried Xarelto (pills) and they work like a charm although very pricey in this country. I was informed I would be on blood thinners for at least 6 months. I went off of the pills a couple of weeks ago ( 6 months was up) and another blood clot suddenly hit and now I'm on these pills for the rest of my life due to a recent diagnosis of Thrombophilia which I know very little about. I was warned about the dangers of Xarelto as if I needed emergency surgery I would be unable to have it for 24 hours which is rather scary. If Warfarin strips are available here I would gladly check them out.