The National Institute for Health and Clinical Excellence (NICE) and the CoaguChek-XS

You may remember "Warfarin" telling us about NICE examining the support for users to be provided with CoaguChek XS machines for self testing. Well I applied to join their Working Group and was accepted as a patient representative and an experienced user. Their meetings begin next week so if you have any views about this subject or questions which should be addressed to NICE please use the messaging system or Blogs or Questions fields to let me know and I promise to make sure that they are presented.

[gel1]

Hi PBirt

If approved will all PCT's have to prescribe testing strips and/or run a parallel INR testing service i,e check patients INR periodically.

[Hidden in reply to gel1]

Too early to tell but my guess is that if NICE approve the issuing of INR testing machines to patients they will only "authorise" it and not make it mandatory. If that proves to be so then just like strips today it will be up to local PCTs ( Now CCGs of course) to individually decide whether to issue them on prescription or not. In any event it is almost certain that local anticoagulation Clinics and/or GP practices and health centres will continue to carry out INR testing just as today for many years to come, especially for thos who are on anticoagulation medication for only a few months such as many DVT patients.

Would you want them to issue machines and strips on prescription in all areas for long term warfarin users?

[gel1 in reply to Hidden]

Yes machines and strips in all areas but only if the patient is confident to use them, and maybe we could hire the machines at a small cost. Good luck.

[richardoxuk in reply to gel1]

Or buy them at a bulk NHS negotiated price?

[worriedmother in reply to Hidden]

Hi

Just joined this web site on behalf of my son. I can't believe after nearly 20 years of self testing our GP surgery have now said they cannot prescribe strips for my sons coaguchek xs machine. He is a very reluctant patient and I know his reaction will be "well I won't take any more warfarin then! I can't afford £60 for strips."

[Hidden in reply to worriedmother]

Hi

I am so sorry to hear of your dilemma. Has your son been self testing his INR for all that time and, if so, which machines has he used? it seems very surprising for your GP to suddenly reverse decisions if so.

Is it the GP practice who have changed their view or are they following the guidance of the CCG? If it is the GP then appeal to the CCG and ask for advice on an alternative GP practice who will prescribe strips. Most do these days so it shouldn't be too difficult. If it is the CCG then you have a bigger problem which needs the support of your local MP or hospital. Which CCG area are you in?

[worriedmother in reply to Hidden]

Hi thanks for your reply. Well over 10 years we have self tested . We were with BCH and Matt was about 12 years old, he had been on warfarin since he was 2 yrs old. Our original machine had to be regularly calibrated. This current machine the xs is so much more convenient, not requiring calibration and the strips do not require refrigeration. Our GP's letter states that the new directive from the Prescribing Committee says they can no longer prescribe the strips. However, today I rang the surgery and after speaking to my own GP, she has reassured me that it is likely that they will continue providing strips for my son because of his condition and his reluctance to attend any appointments either at hospital or the GP's surgery, so hopefully

we might be okay.

Thank you for your advice though, very grateful.

[Hidden in reply to worriedmother]

Great to hear this but do let us know how you get on. As a matter of interest I also use the Coaguchek XS. Most areas of the country now do prescribe the strips but a few still are holding out. It will change as the NHS is looking more closely at "self care" as a means of releasing funds from some patient care for other uses and NICE is considering agreeing the provision of the machines on prescription too to long term patients as well as strips, just as in the case of diabetics. Hang in there and be persistent hey. All the best. Peter

[callum19 in reply to worriedmother]

Hi go to your hospital consultant and get a clinical. Need letter under equality and diversity under protected 9 characteristics disabilities your son should be treated as equal to someone with diabetes if not go to the equalities commissioner

[miclyn2014 in reply to Hidden]

long term warfarin users should all have the option to home monitor, however some are not suitable. A GP practice or anti coagulation therapy unit needs a proforma for estimating the suitability [reliability]of a patient for this facility. To some it would be too much of a burden.

[Hidden in reply to miclyn2014]

Miclyn2014. I couldn't agree more. Some patients would not have the cognitive ability or reliability to self manage and they should not be put at risk. In quite a few of those cases a close relative or carer could be relied upon, as with blood sugar testing of type 1 diabetes patients, but under no circumstances should it be assumed that the patient can manage without trained support.

[EWC-Devon]

I have recently bought a Coaguchek device and have an appointment with my GP to see (amongst other things) if he will prescribe test strips. I have contacted my local hospital trust (RD&E) for their position on the NICE directive. They have agreed to look into it, but no reply yet. Can anyone suggest other ways I can find the CCG's policy in my area (Exeter)?

[Hidden in reply to EWC-Devon]

Hi EWC-Devon

I would make direct contact with the Devon CCG whose details are at devonhealthandwellbeing.org... . They should be able to tell you if your GP can't help you.

All the best

[Hidden in reply to EWC-Devon]

Hi again. Abetter website with more direct access to the CCG covering Exeter is newdevonccg.nhs.uk/eastern/... . Hope this is more helpful

[tk11]

Good luck PBirt we are all behind you....if we can help you let us know.

I too use a coagichek xs and have no problem in my area of Buckinghamshire obtaining strips. Tena

[gizmomaven]

Hi. I have been prescribed warfarin for life, so I would approve of those people like me should be able to self-test. If you have just have DVT and need warfarin for a limited period, then I don't think that self-testing is neccessary

[olddodds]

Good luck PBirt: Hope it is all worth while.I am not happy with some of there guidelines.Especially the one which affects me. Its about Endocarditis. I had this in 2004/5, which ended up with me having to have surgery, replacement Aortic valve, & a repair to my Mitral valve. I was informed by my local hospitals Cardiologist, that if i have any evasive procedures done, such as ops, dental work, that i should have an antibiotic before hand.But the latest info from NICE state that this is not necessary, as there is no proof this helps.But my Cardiologists insists that i must have it. Luckily my local hospitals will provide an antibiotic for me. I had Keyhole surgery to remove my Gall bladder last year. The hospital were only to glad to give me an antibiotic before hand. It made me feel happier as well.Even when i have had an Endoscopy, or a Gastroscopy done , they were only to pleased to give me an Antibiotic before the procedures. Surely its about making the patient happy, & relaxed before said procedures.The only time i cannot get an Antibiotic before hand, is when i visit my NHS Dentist. He refuses to, they just state what the NHS guidelines say. But i am lucky as my GP. will prescribe me with a prescription for an antibiotic.TO ME, ITS ALL ABOUT SAVING MONEY. BUT MONEY WE HAVE PAID IN FOR. {Another subject}

I have also been self testing for my INR now for about 5 years, so much more convenient. Again i am lucky my GP will prescribe the test strips for the Coag xs. tester. I am confident that i could self dose, but i feel better in having a safety net around me with the hospital, who are excellent.

Again I wish you good luck. I am pleased someone is standing up for us.

[Kernowman]

It would seem that GP's and health practices are more driven by costs than the care of their patents. I was initially prescribed Warfarin for my now permanent AF condition, but after struggling to keep within the INR range, was then told by my doctor that I was considered low risk and could move to Aspirin, which I did. 12 months on, I still worry about the fact that Aspirin is now no longer considered a worthy anti coagulant, I tried to go onto one of the novel anti-coagulants. This was ruled out by my GP who informed me that their Heath care practice was some 19M in debt, and money was basically not available, but they would consider me for warfarin if I wished. I used to receive 6 monthly checks by my heart consultant at the local hospital. However, my consultant retired and when the new man took over, I was considered again to be low risk and their time would be better used by someone who had a more worse condition than I. I was also patronised as the consultant told me that 'I was very knowledgeable about my condition and if I needed any further treatment in the future, I could consult my GP.' No advice to suggest going back to my GP every 6 months. It felt that they just wanted me off their books to make way for someone else. This did make me feel that I was wasting people's time, but after I while, I realised that I wasn't and really should have been kept on their books.

I even suggested that I would pay for one of these new anti-coagulants, but was told that I would have to find 'someone' who would issue a private prescription. I suspect that if I wished to self monitor my INR by purchasing a CoaguChek XS machine, my GP practice would not pay for the necessary test strips.

My view is obvious, it is all about saving money.

[Hidden]

Dear Kernowman. Sadly your experience is all too common but unacceptable. Firstly, your health and safety must come first and becoming anticoagulated to avoid a stroke arising from your AF is vital. Asprirn is now proven to make no effect on the occurrence of strokes for patients on AF so is a non-starter. Warfarin is an excellent drug if managed correctly and if it is all that is available in the short term then it is infinitely better than nothing. Of course Dabigatran is more convenient but if it is not yet available then so be it. I would go for Warfarin and clinic testing without delay. I would then take steps to find out if the prescribing problem is your GP or your local CCG. If it is the GP then change GPs. If it is the CCG then get your local MP involved. You are correct that it is all about saving money but the cost of managing you with a stroke or even the cost of managing your Warfarin control within the NHS system will be much greater than the cost of Dabigatran or test strips.

Hang in there and persevere and the best of luck. Please do let us know how you get on.

[Bizzle]

I had an aortic valve replacement back in 1998 and have taken Warfarin ever since and paid for my prescriptions for almost 16 yrs as the valve was man-made. I have had my INR checked at hospitals and GP's over the years. I wanted more control over my health especially since I had a stroke in 2011, which affected my vision and led to me having 3 months off work and not being able to drive.

Recently my GP has said I cannot have a carton of 12 test strips because I've already had one carton this year (since last October) I am going to USA soon to see my son and to hold my granddaughter for the first time since she was born in 2011 and I need to take these strips to keep me safe in the knowledge that my INR is stable whilst I am there. I have had to buy a carton at the cost of almost £70.00. I am quite annoyed as I am over 60 yrs - still working so I am able to afford that this month! But when I retire that will be a different story!

The reason the GP gives is that I also have my INR monitored at the GP's and I am stable. The reason I am stable is because I monitor my own in between as my diet can change, more greens etc., as we all know have an effect. Is this correct are all GP's refusing this on this basis now? Thank you for any helpful comments.

[Hidden]

Dear Bizzle

Thanks for the information, I will relate the facts, anonymously of course, to the folk at NICE. You have of course highlighted one of the most urgent reasons to supprt self monitoring, i.e. to get better control of patients INR. NHS seem content with a "Gold Standard" of 60% of the time within therapeutic range of INR but I know that 90+ % is achievable with self monitoring which is my normal experience after 15 years of self monitoring. Weekly testing is very helpful to achieve this however which is what many who self test carry out, especially those with varied lifestyle, diet etc.

If your GP won't agree then firstly find out if it is the decision being taken by him or is it being imposed by your CCG. If it is the GP then I would seek out another GP who is more flexible. If it is the CCG and they will not relent after you appeal to them then get your MP involved.

I do come across some GPs who take the view of yours and a few CCGs who will not approve any strips on prescription but most do agree and will give out adequaye supplies. Mine gives me a prescription for 48 strips every 11 or 12 months when I ask for it and this is not unusual.

Hang in there and persist and we will see what NICE can do but this may be well into next year to reach a conclusion. Do let us know how you get on please.

[Bizzle]

I did ask my GP again and in a nutshell it is because of costs as GP's get paid if we have our INR monitored by them but not if they hand us the test strips. I could not elicit anymore information other than that although reading between the lines I feel it is the Manager of the Pharmacy within the practice who has made this decision.

I believe I am the only patient too who has their own coagucheck machine within my GP area.

I find it incredible that although they can see that self monitoring in the long-term is more effective in preventing complications like strokes, they are driven by costs so much that the health of a patient is secondary. Is that not against their ethics? The test strips would cost £67 for 24, which would last me a year. We really are scraping the barrel when the cost of these for a year is so low when by not having these, could be in fact, life threatening.

Can they not write an NHS prescription out and let the patient obtain these strips at other pharmacies? To have 48! strips a year even 24 is just a dream for me now.

I also met a friend whilst out shopping recently whose husband also owns a coagucheck machine (which I told him about and was happy to spend his own money on obtaining this machine) and had just come out of his doctors and was shaking with worry as he had just been told the same thing. He has only been on Warfarin for the last few years and completely relies on his machine to make him feel secure and happy about taking this medication as they go on holiday quite often so his diet fluctuates. They are both pensioners.

I feel that our NHS does not care anymore about the effectiveness of keeping people well who have supported the system for so long. Who on earth are making these decisions to make the GP's practices feel they have to withdraw this simple tool to help those on Warfarin prevent life threatening situations, which in turn will only incur more costs with the inevitable outcome.

Thank you for being so supportive to everyone, it is good to have someone who will listen and take in our point of view.

[Hidden in reply to Bizzle]

Bizzle

As I said before you have my sympathy and you are not alone in your experience. I would immediately start looking for another GP practice to talk to and approach your local CCG to challenge them with your experience and ask if they are dictating the policy or is it the GP. If it is the CCG then write to your MP but make them all aware that the issuing of these strips on prescription has the approval and support of NICE and central NHS ! I will certainly relate your story to the NICE committee when we meet. What on earth will the GPs do if/when NICE approve the issue of the machines on prescription too?

[catsblood]

my m p ,2 local consultants (whiston and l h c h ) have supported my reqest to my g p for strips and we are at a stalemate.. they have been prescribed in the past in n Yorkshire and used successfully. am anxious,' have been to the c c g who say they cannot make a g p prescribe, . even when both consultant one a cardiologist the other a haematologist ask the g p directly, the g p will not. I think no other knowsley practice is any different so how do I change g p.

[Hidden]

Firstly take heart because whatever may be the CCG policy or advice to GPs the GP is free to take his own, final decision on whether to prescribe strips or not. If your present GP will not support you then you must approach other GP practices in your area to find one who will. One possibility may be to contact some of the local pharmacies to ask them which GP practices issue prescriptions for the strips. When you have found one simply make an appointment with him/her to confirm that they will support you then simply tell them you wish to transfer from your existing GP. They will do the rest. Afterwards you would be wise to advise your hospital which is dealing with your case about the change. I am in Sheffield, South Yorkshire and here strips are given on prescription without objection. All the best.

[miclyn2014]

I had no idea these self monitoring system had been around so long. As I understand it NICE has only just recently approved their use, what took them so long!! I am wondering if the machines as well as prescriptions for the strips will be available on the NHS soon. I am happy to do what I can [I'm an OAP] to support any campaign to fast forward the process.

[Hidden]

Dear Miclyn2014. Their use has been approved for a long time and my surgeon recommended that I use one 16 years ago. Only the strips have been available on prescription though and at present patients must still buy their own machine (around £300). NICE are currently considering guidance for the machines also to be available on prescription for long term Warfarin patients and they will report in 2 or 3 months time. Meanwhile we could all ask our local CCG and/or our constituency MP to support the move.

[callum19]

would like to see the loaning out of self testing kits like they forgot for diabetes being on waferin s just as critical but in another way your blood can go to thick or thin

Also a lust of what foods avoid in every surgery. No one has ever explained to Nd until now about vitamin k. It's like giving someone food ie shellfish that can choke them

I'd like to see more press and media awareness and for people to understand your situation

Thank you

[nissanjean]

Yes I would be interested.