Self testing issues with NHS

Help Support ValveReplacement.org:

Timgander

New member
Joined
Jul 26, 2016
Messages
2
Location
United Kingdom
Hi Guys, never thought I would be joining one of these forums two years ago! On-X aortic fitted 20th July A.M., discharged 24th July P.M. Just had first meeting with ACoag Nurse/department Nuneaton, UK, NHS.

I'm 58 and very busy...here, there, away, home etc. Not 9-5, not 5 day week, you know the stuff. So fitting in with a slow lumbering regime like the NHS is very difficult, costly and time consuming both for me and them, so self testing, and even better self managing HAS to be the way for me..... But not according to them.... they have a BLANKET rule...NO SELF TESTING...IT'S FOR YOUR OWN GOOD.

I accept it's early days and I'm quite amenable to give it a few months for the INR to settle, I can't do much anyway until everything's fully healed, but it is imperative that I at least get into a self-testing position for practical reasons and even more importantly a sense of self-control rather than feeling I'm at the mercy of a behemoth like the NHS.

Anyone else had experience of stubborn NHS Trusts and how I should argue my case??? Nothing worked today, I was treated like a kid who couldn't add numbers up..

Tim
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,405
Location
Queensland, OzTrayLeeYa
Tim

tell them they have their heads so far up their arses its only their shoulders stopping them from disappearing.

the following is a UK study which shows better outcomes for the patients and better outcomes for the community and lower costs for health care ... tell the manager to step down and make way for younger folks who have a clue about modern practice (and he can retire as curator of a museum somewhere)
The clinical effectiveness and cost-effectiveness of point-of-care tests (CoaguChek system, INRatio2 PT/INR monitor and ProTime Microcoagulation system) for the self-monitoring of the coagulation status of people receiving long-term vitamin K antagonist therapy, compared with standard UK practice: systematic review and economic evaluation.


http://www.ncbi.nlm.nih.gov/pubmed/26138549
CONCLUSIONS:
Compared with standard monitoring, self-monitoring appears to be safe and effective, especially for people with AHVs. Self-monitoring, and in particular self-management, of anticoagulation status appeared cost-effective when pooled estimates of clinical effectiveness were applied.
From the reports exec summary:
1.4 Results
Clinical effectiveness
In total, 26 RCTs (published in 45 papers) were included in the clinical effectiveness review with
mean sample size of 337 participants (range 16 to 2922).
Primary analyses were based on data from
21 out of the 26 included trials relevant to the comparisons and outcomes of interest. The majority of
trials (85%) investigated the use of the CoaguChek system including model ‘XS’ (n=414 in four
trials), model ‘S’/CoaguChek (n=3910 in 17 trials), and CoaguChek Plus (n=1155 in one trial) for the
self-monitoring of anticoagulation therapy. Two trials utilised both CoaguChek and INRatio together
(n=222) while other two trials utilised ProTime (n=3062). No trials that exclusively assessed the
clinical effectiveness of INRatio were identified.
Only four trials were judged at low risk of bias. Three of these trials used either the CoaguChek model
‘S’ or the model ‘XS’ for INR measurement while the other trial used CoaguChek XS to measure INR
in children.
The results of this assessment indicate that self-monitoring (self-testing or self-management) of
anticoagulation therapy leads to significantly fewer thromboembolic events (RR 0.58, 95% CI 0.40 to
0.84, p=0.004) compared with standard primary care or anticoagulation control in specialised clinics.

Self-monitoring (self-testing and self-management) did not demonstrate a significant reduction in the
number of major and minor bleeding events compared with standard care (RR 0.95, 95% CI 0.74
to1.21, p=0.66). In people with artificial heart valves, self-monitoring almost halved the risk of
thromboembolic events
(RR 0.56, 95% CI 0.38 to 0.82, p=0.003) and all-cause mortality (RR 0.54,
95% CI 0.32 to 0.92, p=0.02). There was greater reduction in thromboembolic events and all-cause
mortality through self-management
but not through self-testing. Fewer thromboembolic events were
observed among people who self-monitored their therapy compared with those who were managed by
their GPs or physicians but not compared with those managed in specialised anticoagulation clinics

let me know if you want the full text

Also, in anticipation of you starting self measurement and self care, a blog post of mine:

http://cjeastwd.blogspot.com.au/2014...ng-my-inr.html

Let me know if you want me to give you a hand with learning the ropes of self management

Hope your recovery is smooth and uneventful
 

Agian

Well-known member
Joined
Jun 10, 2013
Messages
2,343
Location
Adelaide, South Australia
Fucking bureaucrats they grow like a bacterial colony. We have the same issues here. They take away funding for front line care so they can hire dickheads who will get them over the line on Election Day. Of course they need to justify their existence somehow.

You do what you want. Buy a coaguchek, work with your gp and leave the bloc vote out of it.
Sorry to be dramatic but that's exactly how it is.
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,916
Location
California
I agree with the others here - get your own meter and supplies. Any clinic that is comfortable with testing every month - or even every two months - is out of touch with reality. Although the On-X is supposedly a lower risk of clot formation than the older valve like the one that I've been carrying around for nearly 25 years, it's still good practice to self-test so that, week by week, you've got an idea of what your INR actually is.

My current clinic doesn't object to self testing, but they've done little to encourage it, either. I self-test, usually weekly, sometimes at longer intervals, and I use the blood draw to confirm that my meter (a Coag-Sense) gives me a value slightly lower than the lab. I also rely on the clinic for Warfarin refills, so I have to partially play their game.

If you don't want to fight with the NHS, self-test and self-manage, then go into their location for the altogether too rare testing and prescription renewal.

Good luck
 

Timgander

New member
Joined
Jul 26, 2016
Messages
2
Location
United Kingdom
Thanks for the quick and forthright responses guys... seems like I touched a nerve from the ferocity of the replies... ;-)

Pellicle, thanks for the study, I have printed it and highlighted it. I'll hand it to those in the ivory towers on Friday when the next appointment is. Your blog is, to say the least, spot on.

The surgeon said that my target INR should be 1.8 in line with On-X spec (although when I read the same spec it agreed but stated that 2.5-3 for the first three months was suggested). I was put on 5mg and as soon as the INR hit 1.9 they discharged me, but by Wednesday at the clinic it was at 4.7 so they stopped all doses for two days so we are back to the beginning after a see-saw event. The clinic also refuted the 1.8 target stating "Oh, our computers don't go down that low, we want you on 2.5-3.00"... Is there some kind of power struggle going on here??

I have no problem getting a Coagucheck and consumables but I am usure what armhold/leverage the NHS have over me regarding accepting results, where I/they stand with regards to my GP (who has the higher authority?). In an ideal world I would self-manage with medications prescribed by my GP as my blanket method and just bow to the NHS clinic when 'summoned' to keep my record clean and for comparitive purposes, but I'm not sure who has overall control? Can the NHS 'veto' my GP??

To add insult to injury (the axe-line down my chest), guess what was used to determine my INR in the clinic just after they told me that self-testing was not an option for my own good?....

Yep, a Coagucheck...

Tim
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,405
Location
Queensland, OzTrayLeeYa
Hi

Timgander;n866758 said:
Pellicle, thanks for the study, I have printed it and highlighted it. I'll hand it to those in the ivory towers on Friday when the next appointment is. Your blog is, to say the least, spot on.
you're welcome ...

The surgeon said that my target INR should be 1.8 in line with On-X spec
not to sound pedantic here, but I'd say that for the On-X that 1.8 is the lower minimum and that target could be 2 ... myself for various reasons i'd prefer to sit with the Standard European Sugeons Guidelines of target =2.5

So that in reality translates to a range of 2 ~ 3 (or Target = 2.5)

For sure the Gelia study has demonstrated that INR as low as 1.7 was not problematic, but remember that's the minimum not the target. There is equally no reason why you would be harmed with INR=3

So my money is on Target = 2.5

no stress if I swing low, no stress if I swing high by as much as 0.8 either side. If you were at 1.7 and swung down to 1 you may end up with a TIA or something less transient

(although when I read the same spec it agreed but stated that 2.5-3 for the first three months was suggested). I was put on 5mg and as soon as the INR hit 1.9 they discharged me, but by Wednesday at the clinic it was at 4.7 so they stopped all doses for two days so we are back to the beginning after a see-saw event. The clinic also refuted the 1.8 target stating "Oh, our computers don't go down that low, we want you on 2.5-3.00"... Is there some kind of power struggle going on here??

I have no problem getting a Coagucheck and consumables but I am usure what armhold/leverage the NHS have over me regarding accepting results, where I/they stand with regards to my GP (who has the higher authority?). In an ideal world I would self-manage with medications prescribed by my GP as my blanket method and just bow to the NHS clinic when 'summoned' to keep my record clean and for comparitive purposes, but I'm not sure who has overall control? Can the NHS 'veto' my GP??

To add insult to injury (the axe-line down my chest), guess what was used to determine my INR in the clinic just after they told me that self-testing was not an option for my own good?....

Yep, a Coagucheck...
bwaaa hjahahahah


and guess what ... a fancy machine called an i-Stat uses the same chemistry and electro methods ... funny innit
 

jlcsn2015

Liborio
Joined
Sep 21, 2015
Messages
224
Location
Toronto
Have been doing self testing for 6 years now, and mostly i use the tip i found here of using a rubber band to help, but past 2 tests had issues with not enough blood coming out, so i wasted 3 strips two weeks ago and 2 more a couple of days ago; as it used to happen when i started. Yesterday instead of using the rubber band that worked very well for 6 years, i did the puncturing and then Squeezed my finger with the other hand and that worked fine, INR came up as 3.2 because i thought blood was not coming out due to low INR, so blindly increased the Warfarin 0.5+ for several days; Yesterday took 1mg and same today, my lower goal is 2.1 and anything above is fine. Just sharing, in case someone had the same issue
 

Al3x

Active member
Joined
Jun 18, 2021
Messages
31
Thanks for the quick and forthright responses guys... seems like I touched a nerve from the ferocity of the replies... ;-)

Pellicle, thanks for the study, I have printed it and highlighted it. I'll hand it to those in the ivory towers on Friday when the next appointment is. Your blog is, to say the least, spot on.

The surgeon said that my target INR should be 1.8 in line with On-X spec (although when I read the same spec it agreed but stated that 2.5-3 for the first three months was suggested). I was put on 5mg and as soon as the INR hit 1.9 they discharged me, but by Wednesday at the clinic it was at 4.7 so they stopped all doses for two days so we are back to the beginning after a see-saw event. The clinic also refuted the 1.8 target stating "Oh, our computers don't go down that low, we want you on 2.5-3.00"... Is there some kind of power struggle going on here??

I have no problem getting a Coagucheck and consumables but I am usure what armhold/leverage the NHS have over me regarding accepting results, where I/they stand with regards to my GP (who has the higher authority?). In an ideal world I would self-manage with medications prescribed by my GP as my blanket method and just bow to the NHS clinic when 'summoned' to keep my record clean and for comparitive purposes, but I'm not sure who has overall control? Can the NHS 'veto' my GP??

To add insult to injury (the axe-line down my chest), guess what was used to determine my INR in the clinic just after they told me that self-testing was not an option for my own good?....

Yep, a Coagucheck...

Tim
I've had some resistance to self testing, although the NHS Trust in my area do support it. Each area has its own policy I believe. I find warfarin support in general is pretty ropey. I get prescribed meds and not warned that they will impact my INR. My tip is to Google each new med you get to see if/how it interferes.

It's worth noting that you can get the test strips on prescription if your GP will approve them. Even if they won't, just pay for the strips. I wouldn't be without my monitor. My final tip is to look at getting an annual prescription certificate. It's about £120 and means you don't need to pay for individual prescriptions. Good luck!
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,405
Location
Queensland, OzTrayLeeYa
Thanks fellas, I enjoyed reading this old thread (from 2016) again. I miss Agian ... you know, one of those doctors we have here who knows his stuff but as we are informed by the DK's "none of us here are doctors".
 
  • Like
Reactions: PAN

pekster11

Well-known member
Joined
Apr 20, 2011
Messages
225
Location
Chester, UK
Sadly I think that is correct. So stupid. Luckily LHCH have their eyes open.

Patients also have the option to self refer as far as I know. Find a cardiologist at a modern Trust if that's an option?

P
yes this is true
In the month after my surgery , i stayed at my parents house in Liverpool.
During that time I had temporary registration with a local Medical centre. I had my INR tested every week via a coagucheck meter, and the nurse gave me a weekly dosage according to the result.
This is a good system, that I was happy with

However, when I went back to where I live in Flintshire, it was completely different.
I had to go to the GP and collect a blood test form, drive 20 minutes to the Medical Centre, get a venous draw, wait a couple of days, and then get the result and the dosage from the GP. Appointments were set to once a month !!

Inefficient and inadequate.

I had to put pressure on my GP to prescribe me test strips for my coagucheck meter in the end.
I only go to the Medical centre once every 3 months now, and am just using it as just a quality control check against my meter

Incidentally, my GP never asks for my coagucheck results, and still emails me after my infrequent visits to the Medical centre to give me the dosage 😂
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,405
Location
Queensland, OzTrayLeeYa
I had to go to the GP and collect a blood test form, drive 20 minutes to the Medical Centre, get a venous draw, wait a couple of days, and then get the result and the dosage from the GP. Appointments were set to once a month !!
That's a joke...

Inefficient and inadequate.
That's conservative in its wording...
 
Top