How do you get signed off for self testing and self dosing, I already have a Coagucheck Xs Roche machine.

[Sarita]

Hello all I am english and live in spain, I had a pulmonary embolism 3 years ago and take Sintrom (acenocumerol)

I am soooo frustrated....I really want a level of independance from the situation I am in right now, so my mum bought me the Coagucheck xs machine from Roche and I have been practising taking my INR and comparing it to the results from my monthly INR check at the hospital.

I managed to get myself on a course next tuesday to learn how to use the machine (I already can), then you go back after a week or so to learn how to self dose.

Just had a call from the course centre saying that for my condition it is not recommended that I self dose and they will not give me the certificate to give to the doctor for me to be signed off to self dose. I feel well fed up, I need independance from the spanish system.....the health care system has had many cuts as spain is soooo in debt, the amount of patient care is down.

So I am going on the course anyway so I can speak to this doctor in person to find out why they feel with my condition they will not sign me off for self testing or self dosing, (whether they will allow me to self test and phone in the results I do not know),

How does it work in the UK? I know there are many on here who self test and or self dose.....what did you have to do to get signed off? and how is it managed there after?

My thoughts are that if I cannot be fully in control, then at least I can self test and self dose for 2 months and see the heamo every 3rd month, or something.....something so that I dont have to go every single month and stand in the queue with 50 complaining 80 year olds for goodness sake.....it drives me mad every month!!!

So again, what do you have to do to get signed off in the uk? And does anyone know why with this condition it might not be recommended.....so I can prepare my case and also write to the rheumy and the heamotologist and try to make some sense of it all......

THANKS in advance

Sara

[Sarita]

Oh I didnt mention I have primary hughes with Sirognens...sorry cant spell that one!

[MaryF Administrator]

Perhaps if you start off doing both, they can then have you in periodically and gain confidence with what you are doing - lots on here will have had a similar set of circumstances and there are others out in Spain. Sorry I don't have to test currently, being only an aspirin girl! Others will be better with fine tuning detail for you. All the best. Mary F x

[David_Madrid]

Hi Sarita,

Here you have an Spaniard with APS and on Sintrom, living in Spain )

I also used to suffer the line of 50 persons. First advice: if you can, try to be in the top of the list. You must say you have a work. It should be enough for them to give you a better appointment for the next time. With this, I usually was in the first five positions in the line, so I did not have to wait too much.

The advantage of this system (at least it used to be like this a couple of years ago) is that you have inmediate access to an Hematologyst if your INR levels are wrong or if you have any doubt. However, it is true that you may take the whole morning in the Hospital if you are not lucky.

You can also talk to your GP. They can check your INR in the Health Center close to your house. That's what I do now. And also it is much easier to convince your GP for your selftesting as you will have a closer relationship with him/her.

Saludos.

[Sarita]

Hi and thank you so much Mary and David

My husband was very kind and helped me to phone and talk to the people who run the course...he told them that they didnt need to take responsibility for me, that ultimately my doctor at the hospital would have the final say. They said the course was full so I think they are probably trying to reduce the numbers of people on the course?

I am going on the course on Tuesday and will see my doctor GP on Wednesday to tell him everything and will also tell my Rhuemy and Heamotologist next month....I have the machine and the will to learn and the responsibility to manage my own condition so I do want a certain amount of responsibility....any foreigner in a foreign land would want this for themselves no¿?

Wish me luck people!!

Sara xx

[Sarita]

By the way David, its nice to "Meet you" and nice to know there is another spanish person out there with APS, taking Sintrom living in Madrid...thank you so much for making contact and helping. I run a business near Barcelona with my husband so my time is money....especially now its so hard to make money with this economic crisis hitting spain so hard....I do hope that you have a good life and are surviving with work and health during this difficult time

Saludos y buena salud!!

Sara xx

[Helene]

Hi Sara

My parents live in southern Spain (near Torrevieja) and my mother self test and self medicate. She has a CoaguCheck machine, but has not been able to find any place to buy the strips for the machine so I buy them here in UK and send them to her. (I used to self test/self medicate too, and got my strips on prescriptions, but I am now taking Fragmin injections so don’t have to test anymore.) Not sure if that is going to be an issue for you where you live, have you found a place to buy your strips? My mother is being seen by a haematologist at her local hospital once a year and that’s all. She brings her book with her own test results to show the doctor every visit, although he is not that interested in the results, as she has been consistently stabile and has self medicated in many years, before starting the self testing too.

I think if you get your haematologist on board for the self testing and self medicating, more than half the battle is done. You then go back to your GP and the rest is administered from there. I hope you have made a good record of every test you have done so far when practising and also written down the test results from the hospital to compare. When I first started up I used to do parallel tests for a long time, although I did weekly test as my INR was up and down like a yo-yo (hence me now being on Fragmin). I used to bring my machine to the hospital and take my own test within 10 minutes of having a hospital test done, and every test was either exactly the same or within 0.3 of the hospital result, which is very good. My hospital here in UK require test results within 0.5 to accept the machine as calibrated. If you have a record to show for, with parallel tests, and INR within your target, there will be little to argue against you self testing.

The issue about self medicating is a different thing, you just need to prove to the clinic or doctor that you understand the principle of dosing your medication, is that part of the course you are going on too?

Having APS should make no difference to whether you can be allowed to self test or medicate, however, what they might have had in mind is that some APS patients, a small minority, can’t use the CoaguCheck machine, as their blood doesn’t react the way it is supposed to with the test strip and will show up wrong result. For the vast majority, that is not a problem. If you belong to the category that can’t use the CoaguCheck, it will show up on your test results as widely different to your hospital test results, that’s why it is important to have a record ready to show them. If test results with your machine and venous sample results from the hospital is within 0.5 every time you test, you don’t have to worry, you are safe with the machine.

Hope this helps, good luck and I can assure you, you will feel so FREE once you take care of testing and medication yourself!

Take care, Helene.