Bad decision

[tigibear41]

I have recently moved from Sussex to Kent and was told after five years of self monitoring I am no longer able to do this I am in the process of trying to change this as my INR levels are so erratic I am having to go every week to get tested. I can't believe this is a cost effective choice as I am taking up someone's appointment every week.

[cheritorrox]

It's not an option in Spain - I'm on sintrom (which is like warfarin) and have to go to local Health Centre who then have to email the INR finger-test result to haematology at the hospital for dosage details. No opportunity to ask why it's erratic. i asked for an appointment with haematologist back in January - and got one for end of April! To be fair, if I felt anything was wrong I could go straight to hospital and be seen promptly - they were marvellous when DVT first discovered.

[Tillyclot]

ACUK are aware of the postcode lottery system in place for self monitoring which is in place around the country. GPs are directed by the Clincial Commissioning Groups(CCGs) in their localities who decide whether they will fund or support the testing stripson prescription.

ACUK have supported many patients in their intial desire to self- test and below are a few pointers which may help in your discussions:

If you take warfarin for atrial fibrillation or Heart Disease(valve replacement), NICE has issued guidelines which recommend that you can self -monitor - quote this when speaking to your prescriber.

Link below:

Atrial fibrillation and heart valve disease: self-monitoring coagulation status using point-of-care coagulometers (the CoaguChek XS system)Diagnostics guidance [DG14] Published date: September 2014 Last updated: December 2017

Explore the options of switiching to one of the newer oral anticoagulants which don't need monitoring with regular blood tests like warfarin. These treatments are known as DOACS or NOACS. They are either one or two fixed doses per day and are indicated for people with atrial fibrillation and VTE but not suitable for people with replacement heart valves and some clotting disorders.

Of concern is the point you make around your INR levels being erratic. The Time in Theraupeutic range (TTR) should be at least 65% minimum to optimise protection. There is evidence to show that people who self - manage are able to achieve much higher TTR rates as they gain a greater understanding of how warfarin works for them and self manage their treatment with confidence and competence. This evidence was considered for the NICE guidelines in the above link

Ask for any decision to decline your request to self - monitoring be put in writing and advise you will be taking this further

If you would like to discuss further, please write to [e-mail]

[tigibear41 in reply to Tillyclot]

Thank you for your very useful information it's much appreciated.

[Daneball]

Is there any reason you cannot take Xarelto or Eliquis. you never need blood monitoring for these, as they do not change your INR. It is a different anticoagulating process that I am not able to explain

[tigibear41 in reply to Daneball]

I have never been offered any alternative medication and have had two PE the second one was touch and go, I feel a little lost in the system and unless you shout loud you are just over looked.

[micran]

The same happened when I moved from Wiltshire to Somerset, In my opinion the NHS is not national, but regional, medical staff in my area will not listen, and have know wish to discuss self testing, even though I was encouraged to self test by a Cardiac Consultant, I have recently been taken off warfarin due to a bleed on the brain, My Wife and I both have Atrial Fibrulation, and purchased our own strips from Roche at £69--99 for 24, we have taken our meter and self tested all round the world. It's not rocket science! the cost is high but much better than wasting time attending the local surgery every week or so.

[tigibear41]

Thanks I went on to the Roche website and have just purchased some testing strips, I am taking back control, I shouldn't have to but I guess it's not so expensive if I have peace of mind, i never want to go through such pain again.