Self Testing INR management - Borough of Hackney.

[Josh1984]

Hi.

My names Josh, 31 years old. I have a mechanical heart valve fitted when I was 29. As such will be on lifelong warfarin or some future alternative.

Initial INR testing was fine. I bought my own home testing kit, as well as regularly going to the Nurse to test my machine, with their machine. Ive been stable on 9mg per day for well over a year. It got to the stage where the Nurse no longer asked to see me, just that I call in with my results.

Then I started to relax and got a bit slack with calling in. As the phone calls became about 10 seconds long where the Nurse was certainly not recording any results. Went along the lines of. "hi Nurse, myINR is 2.9" "Thanks Joshua, stick to the same dose" hang up, end of call.

Now it seems my poor lack of communication and I've noticed a tightening on repeat prescriptions from the doctors. Particularly since all those newspaper headlines a few months back along the lines of BRITAIN NATION FULL OF PILL POPPERS. Anyway, to cut a long story short. My doctor then called the Nurse. She noted that I hadn't called and refused to see me. Now my Doctor will only prescribe me 1 weeks warfarin at a time. Until I go to the Hospital to get my INR test done. Called the Hospital on 22nd Jan, first appointment was 6th February.

Just to remind you, this whole time I have been self testing. Im always in range, and I look after myself well. Im now being told I have to attend the Hospital once every 2 weeks., often with a wait of well over an hour. Only then am I prescribed warfarin. And only for 2* weeks. This is set to continue while I'm in the care of my current GP.

Now this to me, is a waste of my time. A waste of my doctors time. A waste of my pharmacists time. Everyone being held up when previously everything was working fine.

Im a busy guy, I am a director of a company that employs 15 people. Im almost at the stage where I feel It might be a more beneficial use of my time to buy warfarin form some foreign resource. Just so its not such a burden on my time.

My question is, does anybody here live in London and have any better experience of doctors being more relaxed about self testing. Its driving me bonkers.

Thankyou.

Josh.

[ianp5uk]

Unfortunately my experience has been similar but not quite as bad. Makes you feel like screaming at them; "It's my body!". I had all sorts of excuses as to why I shouldn't self test. I'm waiting for the same authoritarian response as you have had, I fully expect it sometime. I tried explaining I cannot keep taking time out of work. My job involves a lot of global conference calls that I cannot always control the time of and sometimes I am expected to travel.

I suggest telling the story to your MP and maybe writing to newspapers. Personally I feel it's an infringement of my human rights and I think the NHS or specific GP's should feel some heat. We pay for them.

[Josh1984 in reply to ianp5uk]

Thankyou Ian. Think the GP is the next step. Let me know if your situation gets an easier. Best of luck.

[daisyd]

Morning, St Thomas london I have found encourage people to test their own INR.

When I test mine I email it to the clinic, local Hospital were I live, they always take ages to answer there phone then I receive a letter in the post with the dose change if needed the next day.

Don't buy your own you don't know what's in them, if it were me I would make an appointment to see my Gp

[Josh1984 in reply to daisyd]

Thanks Daisy D. Interesting that it seems more relaxed in St Thomas. For what its worth, I've seen my GP 3 times. Its him who's insisting this new system. I do not want to buy my own, but I just need balance and common sense. My time is important, but my health more so.

[nissanjean]

Read the NICE Guidelines in self testing and self monitoring.

These advocate self testing , monitoring and calculation.

See GP and take machine along with you to show previous readings to demonstrate proper monitoring.

Contact Roche diagnostics and alert them.

Keep a record of dates of phone calls to the nurse and show GP.

Point out that you are saving the NHS time and money by self testing as well as having better control in your life. If diabetics can be trusted to self monitor etc then why not those on warfarin?

[Josh1984 in reply to nissanjean]

Your completely right. Im doing half of this already. But I could step it up to try prove my point. My yellow book is full of notes of INR results. I can go in the diagnostics of my reader and go back and see all results. I just fear that I've pleaded with them 2-3 times. They seem to have put up the barriers.

[Hidden]

G'day Josh,

Yes, I have a similar experience. I was 65 when diagnosed with AF by East Surrey Hospital in Reigate. Once sorted and put on a party bag of drugs including Warfarin I was returned to the care of my GP in Dorking. The Dorking surgery are fully equipped with the Coaguchek XS INR monitoring system complete with software for their surgery computers. In Jan 2010, when diagnosed I was a full time bus driver and getting to the surgery for regular INR blood tests was both very difficult and time consuming - and totally inefficient in terms of productivity ! This fabulous practice encouraged me to buy the device, gave me training and support, tested my machine against theirs twice a year to ensure calibration was OK. This was also important as I travel to Australia a lot and am usually away for a month at a time, sometimes longer and I take the machine with me. I am totally stable and the only time I am not is if I forget to take my prescribed dose. A perfect arrangement and they also prescribed the test strips on the NHS.

After 5 years I am quite proficient in my INR testing and have now started unofficially self managing (my own doses). I keep my own records and statistics and can tell anyone at anytime my status.

Then I semi retired and moved to Cornwall - well - it was as if I'd fallen down a disused, derelict tin mine shaft and dropped into Neolithic times !

No self testing, only the venous draw blood letting from the arm. The surgery I have the misfortune to be with works in the dark ages. I have made representation to my local CCG and am still waiting for a reply - I have used NICE Diagnostic Guidelines DG14 (all about self testing and self managing) to support my argument. The only thing I will say is that my local practice will prescribe me with my test strips on NHS - probably because of my trips to Australia. My local practice is part of this CCG and now my next step will be to take it up with my local practice - if that fails then I will kick it up the line to my local MP and the media - it would seem, in the run up to an election - an appropriate time to bloody well kick ass, and do it hard.

Never come across such a bloody shambles ... I am competent, experienced, got all my faculties, am still working driving buses, pass my DVLA PCV drivers medical each year ... all I want is to manage my own destiny and in doing so it would be nice to think that I would be saving my local practice time, money etc. etc. etc. If all else fails - ultimately - I'll go back to Surrey, adopt an address with friends/ family and get my stuff from Dorking. As I say - a goddam total bloody shambles.

Good luck Josh, sorry I can't be more help. Apologies for the rant !

Aussie John

[Josh1984 in reply to Hidden]

Gday mate. Not really sure not to say here except empathise with your situation. Its archaic and annoying. Lets both write to our MPs and see if we get any results. Best of luck brother.

[Anniel]

I live in London and attend the Royal Free Hospital for INR tests. I have got a home test kit, but as I travel a lot, I need to get to grips with the machine and really need some instruction. I have a mechanical mitral valve and am on Warfarin for life. My range is 2 5-3.5. Our PCT ? Only allows one month of prescription of Warfarin at a time, because too many patients are irresponsible about testing or they may not realise that Warfarin needs to be treated with care and respect when like you and me it is to be taken daily for life. If you were somewhat slack in communicating with the anticoagulant nurse, then you will have caused worry and frustration as the staff have a duty of care to make sure your INR rate is recorded regularly.

Like you, I get frustrated at times, but I cannot understand why the anti coagulation clinic refuses to see you. If not them, is it your GP who is monitoring your Warfarin levels.

I get the impression in my area which is Camden they are not too keen on self testing and they certainly will not prescribe strips for the home testing machines. Which INR clinic looks after patients in your area?

[Rassociates in reply to Anniel]

I live in Worcester and my GP has two trained anti coagulant nurses. I am on wafarin for life as well and my Gp gave me the OK to get a machine and self manage 10 years ago. I manage to stay in range for 86% of the time which is considered very good. The GP funds the test strips and usually I only attend the anti coag nurse every 70 days. I get two months of Warfarin at a time.

[Josh1984 in reply to Rassociates]

your situation sounds perfect, thats exactly how I want to manage my care.

[Balach]

Hi Josh

I live in Manchester - four years ago I told the Haematologist that I wanted to self-test and self-manage in order to have more control over my own body/life, he said no! So, I went to see my GP (who has always encouraged me to take as much responsibility for my own body as possible) and he thought it was an excellent idea. He wrote to the haematologist saying that he would take responsibility for my self-testing and I was duly discharged from the anti-coagulant clinic. My GP gives me six months worth of prescriptions at a time so I only have to see him twice a year. In return I test my INR once a week and email the results (and the amount of Warfarin I am taking) once a month to my GP. I also email the results to the pharmacist. My INR has never been more stable.

Iain

[triff]

Hey Josh, fellow Londoner and MVR owner here!

I've had an interesting time with self testing. I was originally going to the clinic at Homerton where they were using a CoaguChek machine, but they wouldn't let me self-test because I was told atmospheric conditions can affect results and they needed to ensure the machines were properly calibrated. So even though the clinic was good, I switched to North Middlesex who, bizarrely, only do venous tests but do support self-testing. I haven't set that up yet though because I need to switch my GP to one that'll prescribe testing strips and all the GPs in my area are crap. North Mids haven't provided anything like the level of care that Homerton did, they never sent my last results back and ignored a ton of answer phone messages so I've lodged a PALS complaint against them and will be switching back. Fun and games!!

Anyways, I think you should maybe change GP. My INR has been in range for over six months, I had a chat with my doctor and I now have a repeat prescription for 4 boxes of 5mg tabs (it was previously 2), which on my 7.5mg dose should last me almost three months. I find it insane that GPs and pharmacists seem to default to the position of not prescribing Warfarin when refusing them blood thinners is a surefire way to kill someone with a mechanical heart valve. So I think it just comes down to having an understanding with your GP and that they trust you know what you're doing and you're not about to pop a handfull of tablets by accident.

I'm also a company director and a freelancer so I fully sympathise with the impact tests can have on work - not the best thing to be up against a deadline or working with a new client and have to tell them you absolutely need to take the morning off, and I'd rather not have to share personal medical info with people I've just met under professional circumstances. It just feels, well, unprofessional, and it might be the deciding factor between using me or using someone else on the next job.

Can I ask what clinic you're with? I assumed the testing/self-testing policy was a trust level decision but if you're in Hackney that's the same trust as Homerton - weird they wouldn't let me do it. I know the ACE guidelines have changed recently so I'm hoping Homerton will now support me and that I can find a GP who'll prescribe testing strips (have you had any luck there?) so I can get a much higher resolution understanding of my INR.

Cheers,

triff