Freestyle Libre - what's involved & is it worth it..?

[nmr1991]

its now even more clear to me that they don't care about those who are unemployed and on low incomes, which the sensors take half the benefit money each fortnight leaving a pittance for food, electric, heat and water. All this fancy equipment: pumps, cgms, and now this sensor are reserved for those who are lucky enough to have jobs. Yeah £1250 per year no thanks - i only get £2500 excluding what I buy for food etc.
I know that what I've got (pen injector, old 70's style monitor, cheap needles etc) which is currently under the NHS is working but I just don't have the motivation to test myself and just rely on what I feel like at the present time, so in this regard the freestyle libre wouldn't really benefit me anyway. Another reason would be it wouldn't fit on my arm because the 5mm needle is too thick.
And not testing would ultimately lead to not being eligible for a pump in the future or any other NHS funded devices that wouldn't be eligible and my [non-existent] testing habit will be highly unlikely to change.

 

[tim2000s]

its now even more clear to me that they don't care about those who are unemployed and on low incomes, which the sensors take half the benefit money each fortnight leaving a pittance for food, electric, heat and water. All this fancy equipment: pumps, cgms, and now this sensor are reserved for those who are lucky enough to have jobs. Yeah £1250 per year no thanks - i only get £2500 excluding what I buy for food etc.
I know that what I've got (pen injector, old 70's style monitor, cheap needles etc) which is currently under the NHS is working but I just don't have the motivation to test myself and just rely on what I feel like at the present time, so in this regard the freestyle libre wouldn't really benefit me anyway. Another reason would be it wouldn't fit on my arm because the 5mm needle is too thick.
And not testing would ultimately lead to not being eligible for a pump in the future or any other NHS funded devices that wouldn't be eligible and my [non-existent] testing habit will be highly unlikely to change.

What would motivate you to test, if being elligible for a better way of managing your condition doesn't?

 

[AndBreathe]

its now even more clear to me that they don't care about those who are unemployed and on low incomes, which the sensors take half the benefit money each fortnight leaving a pittance for food, electric, heat and water. All this fancy equipment: pumps, cgms, and now this sensor are reserved for those who are lucky enough to have jobs. Yeah £1250 per year no thanks - i only get £2500 excluding what I buy for food etc.
I know that what I've got (pen injector, old 70's style monitor, cheap needles etc) which is currently under the NHS is working but I just don't have the motivation to test myself and just rely on what I feel like at the present time, so in this regard the freestyle libre wouldn't really benefit me anyway. Another reason would be it wouldn't fit on my arm because the 5mm needle is too thick.
And not testing would ultimately lead to not being eligible for a pump in the future or any other NHS funded devices that wouldn't be eligible and my [non-existent] testing habit will be highly unlikely to change.

Whilst the device isn't approved for prescription, I doubt unless folks are offered a trial by your clinic or GP, anyone is getting the Libre free on the NHS.

I have a bit of a contra-viewpoint to yours. You are (or should be) using tried and tested techniques and rationales, tested on a day to day basis by (sadly) millions of T1 patients worldwide. You have the experience of hundreds on this forum to tap into, should you require any further support than your medics can offer you.

The Libre is very new. Much is still being learned about how it works and exactly what benefits it delivers (or doesn't deliver) to users. Having worked in and on product launches for both hardware and software, I can assure you that no matter how much controlled testing is done, in a pre-launch stage, more issues will crop up when the product goes live, into a wider, less well controlled (by controlled, I mean controlled usage, rather than any judgements on diabetes control for this product) populations. Trialists, and even wider user testers are likely to have had some form of training before using the product. Those without formal training are likely (by percentage, not necessarily literally) to have read the instructions fully, in order to get on board and achieve the best possible results from the gadget. When a product goes live, there will be more folks winging it, in terms of application of the sensors, how they use and interpret the returned information and so many more factors.

So, my contra-view is that those of us who are currently using, and self funding the Libre are actually contributing in a marginally philanthropic manner to Abbott's product development, and paying £50, per 2-week cycle to do so.

I am hopeful that by the time this is released on prescription for users (it never will be to me, as I am not even prescribed strips, never mind anything else), it may be more robust with some of the idiosyncrasies ironed out. So, it could be argued we are doing everyone a favour by being early adopters.

I appreciate it is frustrating when the pocket and the product don't match. Give it time, but throwing your testing kit in a corner in a sulk isn't going to help anything, nor is it likely to speed up the availability to you.

 

[AndBreathe]

I think I might be feeling a little grumpy this morning. Did anyone guess that?

 

[tim2000s]

I think I might be feeling a little grumpy this morning. Did anyone guess that?

You may need to start on the wine early!

 

[novorapidboi26]

old 70's style monitor

what monitor are you using?

just a general observation on your latest HbA1c in your sig, have you had one since then...?

 

[AndBreathe]

You may need to start on the wine early!

It's still before 9am here.............

 

[tim2000s]

It's still before 9am here.............

And?

 

[nmr1991]

My hba1c has gone down a bit since then, last time I was on lantus as well as novorapid but now i'm just on novorapid, i'm fine with the set up i have going at the moment which is just injecting myself, only reason I complain about these new sensors and stuff is my dsn keeps lecturing me on the drawbacks of not testing and they want a daily record of my blood glucose at least 4 times a day as if I just started on diabetes again. I guess they just don't believe in me being able to feel what blood glucose I have, if they want me to test, they'll have to fund the sensors because thats probably the closest i'll get to testing.

I have a bayer contour with a terrible finger pricker that doesn't work half the time, but also an accuchek which they don't fund strips/lancets for anymore.

 

[tim2000s]

@nmr1991 The real question isn't about testing for them. It's about testing for you. Why don't you want to know where you are and bring your levels down, when you are likely to feel better for it? What's stopping you from doing this?

 

[Binary]

@nmr1991, I was going to suggest that maybe you could demonstrate that you know your figures by filming for a week before
meals with a mobile phone your prediction then testing you could prove that are reasonable/safely accurate as seeing is believing although if your that spot on then they might think your were cheating by testing beforehand.

I think it would be interesting to see a weeks worth of body prediction vs machine from yourself or anyone else who is confident about where their figures are as your not the only person who doesn't feel the need for testing.

I ask my son from time to time and he occasionally gets it right but he is only six and certainly not reliable when he tells me he is 0.00 just because he wants some jelly babies

 

[Meghalton]

So are is the freestyle libre wireless?!

 

[robert72]

So are is the freestyle libre wireless?!

Yes - it's near field communication, so you need to hold the scanner within a few inches of the sensor to get a reading.

 

[jill17]

Had mine since ".Christmas. It's great as you can scan the sensor whenever you want and wherever you are. It operates through clothes so no problem wearing on arm. Reader is size of mobile phone so can carry in pocket. However my
Second sensor failed on 12th day and readings were very low but as I had thrown sensor and box away it could not be replaced as I did not have serial number! Need to check readings with regular meter to ensure reliability. Bit disappointing but maybe I
Was just unlucky!

 

[noblehead]

Had mine since ".Christmas. It's great as you can scan the sensor whenever you want and wherever you are. It operates through clothes so no problem wearing on arm. Reader is size of mobile phone so can carry in pocket. However my
Second sensor failed on 12th day and readings were very low but as I had thrown sensor and box away it could not be replaced as I did not have serial number! Need to check readings with regular meter to ensure reliability. Bit disappointing but maybe I
Was just unlucky!

The sensor serial number is stored in the Reader, but if you ask for a replacement they do ask that the faulty sensor is returned to them.

 

[Fayefaye1429]

Just to add to this discussion. I was one of the original people to start on a pump in the uk years ago. The amount of faults were unbelievable but there is blame to be had with me too. Being young and unaware I felt health technology would be 100%. It wasn't and I won't go into all the horrors I had with it. I had my libre sent today and it's impressive but as I do with my pump now I always remember if in doubt check/change to pens/ monitors. Technology will never be 100% as nothing is in life however if we don't support technology and its development making life easier won't grow. I'm all up for getting it wrong it's just important to remember this and we need to be responsible to have a back up

 

[nmr1991]

@nmr1991 The real question isn't about testing for them. It's about testing for you. Why don't you want to know where you are and bring your levels down, when you are likely to feel better for it? What's stopping you from doing this?

Feel better to what end? I have no job, no prospect of getting one, no effort is being made to help me get one, so therefore anything that I do to try and get better, something else just gets me down, except being unemployed isn't something that can be cured, its what the government controls not me. Is part of the reason why I don't go to diabetic nurse appointments, the things they say just fall on deaf ears, not like they can help me get a job. At this point in time, a job is more important than my health.

 

[AndBreathe]

Feel better to what end? I have no job, no prospect of getting one, no effort is being made to help me get one, so therefore anything that I do to try and get better, something else just gets me down, except being unemployed isn't something that can be cured, its what the government controls not me. Is part of the reason why I don't go to diabetic nurse appointments, the things they say just fall on deaf ears, not like they can help me get a job. At this point in time, a job is more important than my health.

Whilst I wholly admit to never having trod the mile in your shoes, I would just ask you to consider what good any job would be to you without your health?

I seen from your prorifle you suffer from depression. It is unfortunately very common for an individual's mood to become lower when bloods run high. I do hope things can turn a little brighter for you soon.

 

[Nuck]

Feel better to what end? I have no job, no prospect of getting one, no effort is being made to help me get one, so therefore anything that I do to try and get better, something else just gets me down, except being unemployed isn't something that can be cured, its what the government controls not me. Is part of the reason why I don't go to diabetic nurse appointments, the things they say just fall on deaf ears, not like they can help me get a job. At this point in time, a job is more important than my health.

My brother was like this, we went to a funeral and his shoes did not fit. He got a swelling under his foot that got infected and it burst. They cut 3 toes off and 25% of his tissue. He now has issues with the other foot. Try getting a job in that state when your flat is on the second floor and no lift.
What I am actually saying is having this equipment available could have prevented this, his moods and attitude in general may have improved and then he would have had more luck at work.
I lost the job I loved when I was diagnosed I had no where to live but just got on with life. If it was all down to the government to get us jobs we would all be in the same place. In Other places in the world you get no NHS so a type 1 basically dies in a couple of years.

My meter has bought my averages down and is worth the money. I have cut out other things to afford it but it's worth it.

 

[dvhales]

If you have an Android smartphone, you don't even have to spend money on the reader. As well as a free app, it means one less device to have to carry around. I am only a few days into my first Freestyle sensor but I am already a big fan. I think I will be checking the pennies to fund one permanently, and give my poor fingers a rest from being pricked. I am testing 8 times a day, so if you use the prices on Amazon as a guide, it works out that the Freestyle sensor is actually CHEAPER than the strips and lancets - unfortunately not for me as the NHS hasn't approved the sensors yet - but I assume they will one day!