Anticoagulant self monitoring machine

[traceylou]

I was just wondering if anybody is in receipt of full sickness benefits for APS and how to go about getting one of these machines at home through the NHS??? any feedback would be great....Thank you Traceylouxxx

[paddyandlin]

Hi Tracy,

I think a number of people will have benifits from the Damage done by the clot etc and then the symptoms on top of that, i may be wrong if you need help with this we happy to help.

Regarding the Machines, i know some memebers on this group do use them i may be wrong but i think you have to by the machine first but before you do that you need to speak to you local PCT/GP and ask if they will fund the strips for the machine as you will get a diffrent answer across diffrent PCT's.

Sorry i cannot be much more help but i know someone on the forum will respond back to you.

Paddy

[MaryF Administrator]

Hi there, I think Paddy - above has answered what I would have said, and from what I have heard you do have to make the initial purchase. Hopefully some time soon, this will change. Mary F x

[tim47]

Traceylou. I have used these machines for quite a few years and bought both. I've not heard of anyone getting one from the NHS but somebody has got to be the first. You should be able to get your strips and prickers on NHS script regardless of who buys the machine. Frankly, it must be in the interests of the NHS for some patients to have the machines, certainly my doctor has had cause to be grateful for my ability to check daily on some occasions and if you are in some benefits (IS?) it has got to be worth a try. Maybe your local PALS might be able to help. Your surgery should know their contract details. Best of luck.

P.> Why not ring Roche and see if they know of any circumstances where people have been given/loaned them by the NHS?

[pumpkincake in reply to tim47]

Roche has a program where they discount the machines from $2500. US dollors to $1500. US dollars. Still very expensive. Might I suggest that if you are looking for one...that you look onto Ebay. When I was thinking about purchasing one that was my less expensive option. Some are sold for as little as $500. Good Luck.

[Suejane]

Hi there,

I looked into getting a machine, but was warned by a St Thomas's hospital consultant that the Coagucheck xs machine does not give an accurate reading in 1 case out of 3, for people with APS. Therefore I decided not to purchase one (in case I was the 1 out of 3). Roche told me that they would be unable to offer any kind of refund if the machine turned out to be redundant.

You could of course run your own tests against your regular blood tests for a while until you worked out if the readings were the same/similar.

If you ring Roche maybe you could check it out and let me know for sure.

Good luck

Sue

[WayneL]

Hi, Traceylou.

My daughter has one of the machines and has bought it herself as the Medicare does not cover these machines or the test strips they use.

They are very expensive , but in our case, provide a comparison against her regular pathology test.

This has proved to be useful for her medical professionals as well, giving them information about when her blood spikes etc, in between visits.

Wayne L

[Manofmendip]

Hi Tracylou

I bought my machine, in fact I bought the original type then upgraded to the newer version. I get my test strips and lancets (prickers) on prescription. I need to test daily as my INR can be unstable.

Best wishes.

Dave

[Helene]

Hi Traceylou

I am in receipt of ‘Income Support with disability premium’. I have a number of conditions, APS is just one of them, but when I bought my Coagucheck XS machine last year I was told everywhere I asked that I had to pay for the machine myself and that I could not get it through the NHS. Fortunately it turned out that I didn’t belong to the small minority that can’t use these machines due to having APS, my results are very close to the venous samples I for a long time took at the same time at my local hospital. I get my test strips and lancers on repeat prescription at my GP, and I am now in the process of starting to self manage Warfarin. I am very happy that I spent those £200 when Roche had a sale on these machines last September!

[Suzypawz]

I have purchased mine from another 'Hughie', so the cost was better than new & I managed to convince my docs about using it even tho' they are still doubting the benifits from it.......& I manage to have the strips paid for by NHS......so thats a big help.

At the moment I'm struggling getting it to work when I want it but I'm sure thats just teething problems!! when I get a min' I will try again....as I could do with an inr check this week anyway as not in to have mine checked at docs till next month.

I do think they are a good idea so we can check inbetween tests, if we feel we have gone too low or high, I do feel in time my docs will trust me so I dont feel I have to go there all the time.

Good luck, Sue xx

[bernieembleton]

Hi. I purchased one last year, which has proven to be very beneficial for me, as i was able to go abroad for the first time in 10 years. I have also saved my practice money, as i have not had to have INR's done in the lab. I attend St Thomas's, and did not have a problem with not been able to use the machine. It cost me £200. Feel in more control now and manage to keep my INR's in range. Good luck.

Bernadette

[tiredmum]

HI,

i bought my own machine just over a year ago but it isn't quite as simple as that.

You need approval from your consultants, the ok from your docs to fund the strips and the lancets and also agreement from your anti co-ag clinic.

i then rang roche who wanted proof that I had the go ahead, they then sent a trainer to my anti-coag dept to show me how to use the machine. you also have to sign a contract etc

however for me it has been a godsend as i quite often have to check my levels twice a week and it saves me sitting in a hospital waiting room for ages

It is expensive but roche normally have good offers on.

[aps-and-ph-sufferer]

Hi, I have been using a Coagucheck machine for the past 3 years. I had to buy the machine myself (about £500) but get the strips and lancets on a prescription. You have to check that your local PCT will fund the strips and lancets on a NHS prescription as this can vary from region to region- your GP should be able to tell you this. I also check my machine reading with a test from the hospital from time to time but I feel so much better checking my INR myself and dosing my warfarin/ clexane myself as my local hospital are a bit "twitchy" about my target INR being 3.5 to 4.5. I also have St Thomas' at the end of the telephone if ever I need them. I find this arrangement much better than relying on the local GP/ hospital for my blood tests as I can do them whenever I need to and don't have to waste time with appointments etc. Hope this is of some use to you x x

[Mair]

I'm in the US so my private insurance was involved in the Coagucheck purchase, but I had quite a large copay due. When I called the company to tell them the amount I had to pay was too much for me they asked, What can you pay then?" I threw out a number and immediately they said, "okay, that will be fine." If I had known how easy it was, I would have offered less

[tim47]

I am a bit surprised at the price ranges quoted here. I paid about £400 for my first machine, about £350 when I upgraded a few years ago when the latest came out. I sold my old one on eBay for about £100. I spoke to Roche about whether or not I might be suitable initially and they LENT me a machine to check for myself.I would have thought it in their interest to have trial ones.

I don't think they sought any confirmation from my doctor that I was suitable. I don't think you need a doctors permission either, though if they don't agree it will cost a lot more for the test strips, they are over £100 for 48 I believe. Your PAL should help you argue the case for strips and lancets on script.