Coagchec INR strips on nhs

[fuzzflyer]

My doctor just called and said he cannot prescribe these on the NHS, does anyone over 65 on here get them prescribed?

I,m in Herefordshire

[Rellim296]

I've been given the impression that I would not get them free either. I'm in Cumbria.

[Gmc54]

I don't see why being over 65 would make a difference. You should be able to get them on prescription.

[fuzzflyer]

seems like being an illegal Immigrant is the way forward..

[dedeottie]

I get enough strips to test once a week if I want to. I live in south Wales.

[Davies3590 in reply to dedeottie]

Hi I also live in south wales and just contacted my go who said they would not suply testing strips even tho inr clinic I'll support me and recommend can I ask who provides yoursvthank you

[dedeottie in reply to Davies3590]

I live in llantwit major and my surgery is vale family practice. However I now have apixaban so no testing.

Good luck.

[Davies3590 in reply to dedeottie]

Thank you

[rosyG]

This varies with different CCGs but locally, for example, they give 12 a year on prescription- the rest we buy, but we are challenging this as studies have shown weekly testing can mean we are in range much more often.

we gave a talk, including this, to 200 GPs last Wednesday- think it will be an uphill battle! I challenged them to find a GP with AF who didn't test weekly!!

Someone else on this forum wrote some time ago saying they had challenged re strips and managed to get them on prescription so I think you should do that.

Write to the chair of your CCG in the first instance and do let us know how you get on- think we should all push for strips on prescription- point out it is only the same cost as you attending the clinic as you are not taking up the appointment time there- also cost effective in that self testing can reduce strokes in patients who don't have stable INRs

[fuzzflyer in reply to rosyG]

what is CCG?

[RobertELee in reply to rosyG]

Yes, that was I Rosy. Fuzzflyer it's just a case of banging the table hard enough. Of course the NHS don't want to fund things if they don't have to, so the word 'NO' is usually the default position. But postcode lotteries exist only because we tolerate them - and we really must stop doing that. There is no reason whatsoever for such geographical discrimination to exist and it must be challenged on every occasion. If something is approved for funding by the Department of Health for people in one part of the country it should be freely available to all, no matter where you live.

My GP surgery at first blamed the warfarin clinic for the decision (it was for my own safety!) but when I contacted them they said that it was up to the surgery. I went back to my surgery they said they were sorry but I had been misinformed. Such policies were for the local Clinical Commissioning Group (CCG) to decide. On initial contact with the CCG they agreed that this was their policy. I politely but robustly informed them of my views and said that I would be speaking to my MP and to the local newspaper. I asked them for the date of their next public meeting (they are required to hold these quite regularly so as to appear to keep in touch with their public!) I said that I would like to speak on the issue at that meeting. Three days later I received a call from my GP to say that the strips were approved for issue under prescription and I should make an appointment at the warfarin clinic for instructions and some paperwork. Result! (I didn't attend the CCG meeting - perhaps I should have gone along anyway....)

Now, there will be some of us, because of the frailties that come with age, who, for genuine safety reasons, shouldn't be testing themselves. And that decision must of course rest with the GP in consultation with the patient. But for those of us who are both willing and able, mentally and physically, we should be allowed to self test and if the strips are on prescription in Birmingham they should be similarly funded in Barrow. Though as I say, you do have to bang the table, sometimes quite hard.

[AnneTS in reply to rosyG]

Hi Rosy. I did a freedom of information request on the cost of my individual INR blood test at my local clinic . I was staggered at the cost comparison with self testing. Self-testing saves the B-) a huge amount of money. I also worked for the NHS at the time. I raised the savings that the MAN could make if we could have self-testing. Our diabetic colleagues seem to manage to use their machine ok. I was told that self-testing INR was much more serious and complicated. I was left with the impression that not only were we prone to clots but we were actually clots as well!!! I think we need a campaign by a bigger organisation (Anticoagulation Europe perhaps) to educate our CCG and hospital managers about how easy it is to self test.

[fuzzflyer]

Re this site : Can I respectfully suggest at least a restriction on Abbreviations? or am I the only simpleton on here?

[Rellim296]

Yes, what's a CCG? But some of us simpletons use abbreviations like EP because we can't spell the real thing, nor remember what the word actually is!

[Mrspat in reply to Rellim296]

CCG = Clinical Commissioning Group. It's a local body that replaced the local health authority.

I asked to go to a specialist adult congenital cardiology service in London as I was unhappy with the local general cardiology unit. My GP had to get permission from the CCG to refer me as it was outside of the area. It was a question of funding but luckily there was a NICE guideline which said that someone with my condition is entitled to this type of referral.

CCGs are effectively a group of health providers (mostly GPs) who decide policies and expenditures in a particular area. They are also the body that decides whether or not AF suffers can get the new anticoagulants as opposed to Warfarin.

[Rellim296 in reply to Mrspat]

Thanks for that, Mrspat. Good to know. I haven't a clue about my local CCG, so will do some research.

[fuzzflyer in reply to Mrspat]

Thank you I have just written a long complaint letter to them and my local clinic.

[AnneTS in reply to Rellim296]

Sorry!! CCG is the Clinical Commissioning group which holds the money from the NAG for the funding of all sorts of things such as prescriptions, approval for hospital operations, community services. The CCG also decides on its local policies such as which medicines GPs can prescribe and community health services.

NoT is the international normalisation ratio (or something like that) which tests how quickly your (your as in you the individual) blood clots.

[Rellim296 in reply to AnneTS]

Thanks for that, lundogrot

[Hidden]

Yes, I live in west Sussex and have no problem getting these. Enough for weekly testing if necessary. As I have been having an average of 30 INR tests a year at the surgery I must be saving them money. Sandra

[Hidden]

Yes, I live in west Sussex and have no problem getting these. Enough for weekly testing if necessary. As I have been having an average of 30 INR tests a year at the surgery I must be saving them money. Sandra

[fuzzflyer]

Thanks yatsura, I,m attaching all these comment to a letter to the CCG,_------ as a start.

[Thomas45]

Yes I'm 69 anmd had 24 strips recently prescribed. I tend to test every 4 weeks, or more often if I have an external bleed that takes longer than normal to coagulate (that's only happened twice in 18 months). Bradford, West Yorkshire

[Hidden]

I'm over 65, I used to live in East Surrey and got them on NHS no problem at all. I now live in Cornwall and even though my local GP draws blood from the arm (doesn't use Coaguchek) the practice will prescribe them on NHS. Confront your GP and if he still refuses to prescribe them make a formal complaint to your local CCG. He's just watching his budget that's all.

[Barb1]

I was on warfarin and self testing when I was out of the country or when I felt the need. I had a private haematologist and my GP prescribed the strips. No aggro. Then my haematologist retired and my cardiologist suggested that I went on one of the new anti-coagulants. But the GP refused to prescribe, so I asked for a contact at the GP's whom I could call/mail with my INR test results as I had been doing with my haematologist for 3 years. They refused saying that they could not do that. Catch 22.

After much consultation and me saying that I had no choice but to self prescribe when away, the GP said that that was too dangerous, so he would prescribe Dabigatran but I wasn't to spread it around!

[Hidden]

fuzzflyer - further to my earlier comments. I have just been into the NICE website, Anticoagulation, Warfarin, self testing and it clearly states test strips and lancets can be prescribed on NHS using form FP10. Suggest you down load this info, in hardcopy and take it to your GP and repeat your request and see what he says. If he still refuses then report the matter to your local Clinical commissioning Group. Typical NHS penny pinching.

[AnneTS in reply to Hidden]

San Aussiejohn....can prescribe does not equate to "should" and so some of us carry on trying to get self-testing and prescription testing strips. Thanks for the info though.

[farmerwalt]

I think it was around 7 or 8 years ago that a newsletter from Roche Diagnostics said that the CoaguChek test strips were NOW available on prescription from the NHS. However it would appear that we DO NOT have a National Health Service in the UK, it is just a LOCAL HEALTH SERVICE where each local area decides for themselves whether to follow the decisions made centrally or not. I am 71, live in Scotland and test every week, so I am using 52 strips per annum. I get all of them on prescription, no questions asked.

Perhaps we should be asking AFA to lobby parliament to get the same standard of health care no matter where we live in the UK.

Just my thoughts. Better get off "my high horse" as they say.

Regards to all and hope you keep well.

Walter.

[Rellim296 in reply to farmerwalt]

And what about the little stabber that produces the drop of blood? Does this come with the machine and if so, how many do you get?

I have to grasp this anticoagulation nettle* as clearly (following my EP appointment) I have either to rattle my surgery further regarding apixaban or resign myself to being on warfarin ** until it is out of date or some oncologist tells me I am moribund - when I will have a measure of euphoria. Every cloud ...

I didn't see my EP last week and spoke instead with his assistant who, when we spoke the day after my ablation, indicated that he's not an apixaban fan.

I have enquired about INR self testing and the surgery doesn't have any other patients who own a machine, and the INR lady has said not to buy one online. They have suggested an appointment with a Roche rep.

* The words 'Is this a dagger that I see before me, the handle toward my hand' are somehow springing to my mind here!

** In case anyone doesn't know, I don't like warfarin much.

[Mrspat]

Some posted about this issue a couple of months ago. Apparently the rationale behind the clinical commissioning groups and GPs/clinics not allowing self testing is as follows: the CCG funds the tests for all patients on warfarin. They will therefore not fund self-testing as well. There doesn't seem to be an option for GPs/clinics to tell CCGs that patients are self-testing and presumably if they did, they would lose part of their funding.

[AnneTS]

West Hertfordshire hospital trust are reviewing their patients and those who can self test. I was allowed to self test under the previous senior haemotologist but now that she has retired changes are being considered including having a "Contract" for self testers. My haemotologist at UCH London and my Consultant at The Brompton were happy for me to self test. However, if you are being monitored at a local clinic you have to comply with its system. It is very frustrating as all research seems to indicate that self-testing/management produces better INR control than the clinical setting does. I don't hold out much hope that we will get self-monitoring and therefore prescribed strips any time soon. I assume North Herts is the same. Keep asking your anticoagulant nurse about it so they can nag the powers that be!!!

[fuzzflyer]

Well after writing a formal complaint to the Herefordshire CCG and my surgery, they still will not prescribe. And the doctor said they would not allow a representative from Roache to visit the surgery.

Seems like the Mafia are well entrenched here.

[Loo61]

I'm on Apixaban with no problems! But I had to jump up and down a bit at my GP to get it but I'm sure that'll change at some point

[mrrr21]

Thank you RobertELee for the information regards NHS funding test strips for Coagchec. I have now written to my local Clinical Commissioning Group (CCG) to ask if they would review their policy on test strip prescriptions. Also as an aside, my own INR clinic said that the testers need calibrating every so often however I understand the Cogchec is self monitoring.