SELF MONITORING NO LONGER ALLOWED

[Nil-by-mouth]

Hi all,

As briefly as I can here is my recent experience,

2 years ago I started self monitoring using a Coaguchek XS system, the local surgery accepted the use of the monitor and if I registered with WEQAS ( cost £120 per year ) would get strips on prescription. I didn't get around to registering with WEQAS as I only tested every 2/3 weeks which made it cheaper to buy my own strips.

In November I was told by the warfarin clinic nurse that I must register with WEQAS or I would not be allowed to use my monitor any longer. Calibration being the reason given.

So, I wrote to WEQAS asking how I might register and was informed that they do not register individual home testers, only clinics, surgery's etc. They then contacted Taunton NHS who I believe contacted my local surgery, in Somerset.

Last week I went in for an INR test and was informed of new Somerset Health Policy,

NO MORE SELF MONITORING, insurance and litigation being the reason. I was threatened with the Warfarin prescription being withdrawn if I did not comply. The Doctor in charge of the Warfarin clinic was most emphatic that this was new policy from Somerset Health Authority, and explained that there has been a rethink of self monitoring and it was no longer to be allowed.

Even if this is only in Somerset, many people must be effected. Roche have sold half a million of these monitors, many to people in the UK. Roche still sell these monitors and when buying test strips from them one is asked if one is aware that they are available on prescription?

I just can't believe that what I have been told is correct, and would love to know what the policy really is. Has anyone else found their surgery stopping them self monitoring?

Seasons Greetings to you all

[rosyG]

No- my surgery allow it- hope this is not going to be national policy, Seems very unreasonable and don't understand reasons you have been given. This might be something to ask the association to look into at a national level??

[Hidden]

I don't understand. Can't Roche or whoever the manufacture is do calibration, or does it have to be done by WEQAS, whoever they are?

I was just about to buy a self-monitor because the warfarin clinic made a fundamental mistake that could have resulted in my INR going far too high. But I wasn't going to tell them I had my own monitor, just going to do it as well as the normal clinic.

[Nil-by-mouth in reply to Hidden]

Hi Koll,

From the research I have done, it is not possible to callibrate the XS, each strip performs a quality control check when inserted into the machine. Called OQC, Onboard Quality Control.

In the words of Roche and other researchers, " No further operator adjustment is neccesary". Roche do not make a calibration solution for the XS. They did make and sell calibration solutions for the old Coaguchek model. Independant tests have shown the XS to be reliable and consistent to a factor of 1.0, WHO require a factor of less than 1.7

The XS Plus, used by the surgery, is tested for quality control with a solution, the result of which is sent to WEQAS and used as a national monitoring of equipment, in other words, they want all monitors to return a similar result.

There does seem to be some confusion between calibration and quality control, the former where you test and adjust, test and adjust, etc, until the desired result is obtained. A bit like testing and adjusting the chlorine in a pool.

Qaulity control is just a test, no adjustments are made, and if the result is not acceptable the machine should be returned to the manufacturer.

I wish I had not told them about mine, but having a weak immune system I try to avoid going to the surgery as much as possible, monitoring at home was a joy.

WEQAS act as a national monitor of results, they do not callibrate the machines. And they only register clinics and surgeries, not individuals.

The obvious down side of not telling your surgery is that you won't be able to get strips on prescription, if you could anyway, it may be worth finding out their policy before you comit. When buying the strips, long term warfarin users are exempt from VAT, saving £13 on 24 strips.

[dedeottie in reply to Hidden]

The only calibrating I do is to take my machine into clinic once a year to check my results are the same as those of the machine in clinic. This is only at my insistence, I don't have to sign up to anything. It doesn't sound at all right. However they can't stop you testing yourself as well as having clinic testing. Good luck.x

[Nil-by-mouth in reply to dedeottie]

I took mine in occasionally and compared results, they did rather look down their noses at my little machine, but the results were always the same.

Roche say, " Replace the clinic visits with an INR tester and start setting your own agenda." Attending the clinic every 4-6 weeks is hardly setting my own agenda, while also exposing my weak immune system to more bugs.

[kernow43 in reply to Nil-by-mouth]

Hi, I have been using Coaguhek at home now for a while, completely independent of my local surgery, also in Somerset. When I asked my GP about testing strips on prescription I was just told " we cant do that here", so I just carry on and test myself, normally weekly, and I may just tweek the dose here and there off my own back. However I still go to the surgery for testing when I'm told.

I have tested on my machine straight after the surgery test a couple of times and it's always there or there about BUT

on a couple of occasions, because I was having other blood tests, they also included the INR sent to the lab in Taunton. I tested again as soon as I got home, and when I got the result next day there was a significant difference!

This could be for the time in transit, waiting for collection or whatever, but a bit concerning with regards to all other blood tests, not just the INR.

Anyway, I've wittered on long enough, as dedeottie says they can' very well stop you testing yourself along side their clinic tests. It's for your own peace of mind after all.

All the best.

[Hidden]

G'day Nil-by-mouth,

I can't believe what I've read in your post. I think someone is having a bloody lend of you. However, I have to make a few assumptions here - 1) WEQAS = Wales External Quality Assurance Scheme (am I right ?) and secondly that you live in Somerset, somewhere embraced by the Taunton NHS Trust. That being the case why do you have to join a Welsh based organisation ? Maybe I'm a thicko !

I'm afraid you will need to go to some trouble here - and my suggestion is that you make a formal, written complaint to your local NHS Trust who covers the area in which you live and where your surgery is. Secondly, and making sure it is written on your letter for all to see that you cc your local Member of Parliament and the people who have developed and implemented the Somerset Health Policy. Sorry - its a pain in the a--e - but you really have to put it in writing and formalise it. It is worth fighting for.

For your information when I was diagnosed with AF I lived in Dorking, Surrey. My GP's practice only used the Coaguchek XS devices and they actively encourage and supported me in purchasing my own device - which I still use today. I have now retired and live near Hayle, Cornwall and my local GP's practice is still in Neolithic times and draw blood from the arm, send it to a lab and 24 hrs later the results come back. I still use my device and I use it to check the results of the lab .... and twice now ... I have found the lab results wanting, inaccurate, and the new doseage prescribed as a result of this test to be wrong ! I have formalised this in writing with my GP and that surgery knows I will not tolerate any result barring the one on my Coaguchek XS device. In other words the lab are not fit for purpose !! Interestingly, with these two exceptions - I have found generally the difference between the lab result and my Coaguchek result to be + or - 0.1, just depends. I will accept that - but I will not accept any further variations. At the moment I'm on 70 day tests and am generally on target, I do not test in between tests, but, 10 minutes before I go to surgery for my blood letting I do a test. Another interesting feature is that although my Cornish surgery do not (and will not) use the Coaguchek device - they still prescribe me with the test strips on NHS. On occasions I even self adjust my dose !! This happened on my last trip to Australia (in Nov) when my INR got a bit 'Whacko Jacko' and I had to tweak it. Couldn't do without my Coaguchek device on such trips 'cos, if anybody thinks when I'm outback in Oz and I'm due for a INR test that I'm gonna look for somewhere to do an INR they can bloody dream on - ain't gonna happen ! My device is IT as far as I'm concerned. Roche know what they are doing - for gods sake its not as if its come from some shonky outfit on the internet.

Of course - the other issue is - with diabetics. Is the same Somerset Health Policy gonna apply to those who have a device which enables them to test at home (or anywhere) for the blood reading to enable them to monitor their blood sugar. Bet that doesn't happen ! This is yet another example of the NHS in this country being riddled with double standards. The NHS might well be National BUT a health service it sure ain't.

Go for it if you have the energy and rock the boat and good luck.

Cheers

Aussie John

[kernow43 in reply to Hidden]

Morning AussieJohn, It appears that sending blood to labs from rural areas could be a bit of problem. On the two occasions mine went to the lab the difference with my Coaguchek was +0.4 and -0.7. As I said, more concerning to me, it makes you wonder about the other blood tests being sent. I also have total confidence in my machine and Roche.

Anyway....Merry Christmas and keep taking the pills

Ray.

[farmerwalt]

Hi Nil-by-mouth,

I've been initially self testing and now self managing,(after my anticoag nurse in Glasgpow falling out with me). I've been doing it for years now and once it was announced that the strips were available on presription been getting them supplied, no questions asked. I'm fully dependant on the CoaguChek XS now and my GP is quite happy to continue supplying the scripts for warfarin and the test strips.

I agree with AussieJohn that there appears to be double standards within the NHS trusts that are supposed to be operating under National NHS guidelines. I did read, when I was having my dispute with anticoag service, that the NHS National guidelines were to encourage self testing where possible. I will try and locate the article again and put it on another post. I do agree that not everyone is capable of self testing but if you feel confident to do it then it should be encouraged by your local NHS trust and GP and they should provide you with the test strips.

Walter.

[Dadog in reply to farmerwalt]

Thanks guys, all that comment is so valid and useful. I've copied it all and will have it handy when I approach my GP on the subject. I really would prefer to self test (and sign a liability disclaimer if that's what they want) rather than sitting in a roomful of people who are sneezing and coughing, waiting for the blood letting. I don't mind needles but I have one vein that stands out and they use it every time. Poor thing is looking very varicose and unhappy!

[forestoke in reply to Dadog]

Hi Dadog, I'm just thinking of getting the self checker, my gp says I can get the strips on prescription as I have so many pills I use a NHS card for those so it will be a huge saving , I'm on Dartmoor and I've worked out that its down to a couple of things, one, the full bloods take a far different type of test and the result will always be different , the courier system for the gp will always be a problem and dependant on the amount sent from the warfarin clinic at the gp as to those results , oh and the gp will get paid for the full bloods I guess, two ,,the machine will probably be bought from the gp at their price to us so Roche give the doc a profit margin also I guess. Happy days as I head for the second ablation ! Good luck P

[Nil-by-mouth]

Thank you all for your comments and encouragement.

AussieJohn, I do believe WEQAS = Wales External Quality Assurance Scheme.

Just to clarify, the instructions I was given for 2 years, to register with WEQAS, has now been acknowledged ( by clinic nurse ) as having been the wrong information, which of course leads me to wonder if the new information is correct.

I realise that different Health Authorities have different policies, and the experiences people have with self monitoring vary greatly, perhaps even in the same county. I have established that this is not a personal decision by my Doctor for my well being, nor is it a surgery practice decision, this is supposedly Somerset NHS Policy. Why Mrs Miggins in Yorkshire can get strips on prescription and Mr Wiggins in Cornwall can't is beyond me, but not allowing me to self monitor in Somerset is unbelievable.

I have been wondering if any one can name a surgery in Somerset where prescriptions for strips are given. It would be interesting to know.

My issue with this is about policy, I will continue trying to get to the bottom of what is going on. I have emailed Raj at AFA, I found his post on this forum inviting people to email their story. I shall try contacting Taunton NHS trust to check on the policy for Somerset.

As you say AussieJohn, it is worth fighting for, I'm sure I'm not the only person in Somerset who is or would like to be self monitoring. There are still other avenues of attack which I shall follow, NHS Complaints, Roche, local MP etc.

[gerryatriq in reply to Nil-by-mouth]

Its only when there is something really wrong that one realises that the Quality control of the NHS itself is one of the single biggest problems in the UK. Call it Post Code lottery or whatever, the NHS is just not relaible. When I am in Portugal I just go to the NHS where they are much more reliable (INR 1.50€), and with a nice smile (never see that in UK) and in addition can get ANY blood test I want done privately at state of the art lab, incredibly cheap, and have results with recommendations emailed to me normally, same day, it s then up to me if I contact a GP or specialist to discuss.

The whole NHS system is grinding to a halt under bureaucracy, and mismanagement

[MarkS in reply to Nil-by-mouth]

I can't believe they won't allow you to self test. I can only imagine this is some petty bureaucrat making this decision. What about all the research showing lower stroke risk with self monitoring (and also self management)? Are they prepared to allow more strokes through this policy? I would start off with a campaign through a local newspaper, I'm sure they would love a case like yours. Once the policiticians realise this is a hot potato they would come down on your side and the NHS would be forced to follow suit.

[Nil-by-mouth in reply to MarkS]

Thanks for your suggestions MarkS, but I don't have the strength for that kind of fight, I'm hoping to sort this out in quieter fashion and save what little sanity I have left.

[Nil-by-mouth]

The latest explanation of Policy, by the Warfarin Clinic Doctor, was to compare self monitoring with Thalidimide, that at one time they thought it was great stuff but then changed their minds!

If I wasn't suffering from sleepless nights over this issue, I might well think I was in cloud cuckoo land. How a drug that caused huge disability can be compared with a machine that is credited for reducing strokes and improving life quality is a puzzle, perhaps the Doctor just chose a bad example.

Happy Christmas to you all