Do you want to self-monitor but can't get your health care professional to support you?

[warfarin1]

AntiCoagulation Europe wants to hear from people who want to self-monitor their INR but they cannot get their clinic or their GP to support them. We need people who are prepared to share their stories with a wider audience in order to try to get these situations changed

Either answer this blog with your details or email to [e-mail]

Thanks - with your help we can get equality for everyone.

[Sher78]

I want 2 self monitor (have been on warfarin 4 almost 20 years now & will b 4 the rest of my life). I would b a perfect candidate 2 as my INR is stable & in the long run it would save them a fortune by freeing up appointment times, no lab work needed etc but I can't afford the machine as I recently had 2 give up my job due 2 ill health

[Hidden in reply to Sher78]

Sher78

Thanks for your story. Don't give up hope as NICE is currently considering the guidance to issue machines on prescription to patients like yourself. They will reach a conclusion mid-next year and, as a member of their committee, I will publish it so watch this space. Please tell me, if you could afford the machine and as the strips are already on prescription, would your doctors support you then? Secondly, would you be willing to let me identify you to the NICE committee as an example of one who could be helped

[Sher78 in reply to Hidden]

Yes & yes. It's silly really as there is an old woman who lives across the road from me who has been put on warfarin & she has been GIVEN a machine 2 self test. The thing is she has told me she won't use it as she is scared 2 & is confused by it all, but she won't give me the machine lol!

[cameroncross1971]

My husband has over his lifetime has developed an extremely complicated medical history which has resulted in his life being a very painful & living hell & currently has over 50 items on his repeat prescription & a small army PRN of medication on his acute list, Over the last few years he has had three confirmed TIA’s due to poor anticoagulation & one instance of internal & external bleeding due to having an INR north of ten whilst under the care of the local anticoagulant service, who last year admitted that they were not a position of being able to dose my husband correctly, which has only complicated his history & has left his in a position of now having nerve damage, aphasia, dysphagia, aboulia, left sided weakness, vein scaring & other associated & related damage & with all this his has had a constant migraine which is present twenty four hours a day, seven days a week.

After all this the local haematology department agreed that I could manager my husband INR as I would be in a position to be able to react quicker to my husband individual circumstances & last PRN medication interactions. This I have done successfully for twelve months not letting my husband INR to move outside of his therapeutic range & now we have a new consultant haematologist who has said that we can not self manage our own warfarin therapy as it is not a safe method & does not provide clinical governance. Although all of the official guidelines from NICE, the British Committee for Standards in Haematology & the British Journal of Haematology state that this is a suitable alternative which I am sure that they would not be able to make this claim if clinical governance was not possible. I have appealed against this decision & will be taking to to a judicial review of the law if necessary.

[Josh1984]

Hi. I'm 29 years old, and recently had a mechanical valve replacement. As such ill be on warfarin for the rest of my life. I only had the surgery in April 2013, its now July so im relatively new to all this. I have returned to work and am slowly getting my life back up to the pace it was at before. Im often very very busy, and ive always liked it that way. Getting to the nurse once or twice a week to get my INR tested is tough. Particularly when the 6 surgeries closest to me dont offer the service. So I have to travel 3 miles to the doctors. My new doctor wont prescribe me the machine (i already knew this was very unikely) & ive recently found out that they also wont prescribe me the test strips. I was under the impression they would. I need to self monitor, and i want to be in control of my own life & my care. Im really young & sensible. I dont understand why this is an issue. So in order to prove my point, ive bought a machine anyway, and 48 test strips to get me started. Im self testing on the same days i go to the nurse. After 6-8 weeks im going to prevent my evidence to the doctor and try and give him no choice but allow me to do this. Its exactly the same machine the nurse uses, and i use it in exactly the same way. There seems no reason to travel to the doctors. Im happy to ring in my results and let the doctor prescribe my warfarin. A bit of consistency from the doctors would be great. Lets see how we go.

[warfarin1 in reply to Josh1984]

Dear Josh

I am glad you are getting your life back on track. Your story is exactly the reason why AntiCoagulation Europe and other charities have joined forces to form ACSMA (the AntiCoagulation Self Monitoring Alliance) to try to get the monitor available on prescription. The strips already are, although as you say some GPs wont prescribe them.

Pledge your support and tell your story if you want by going to acsma.org.uk and join in the campaign to get patient choice and equality of care.