FreeStyle Libre

[Fearless36]

I was told off early on in my treatment for doing blood tests on the finger pads. You are not supposed to use the finger pads at all, rather the sides of the tips. Their reasoning is because should you lose your sight or go blind, you need your finger pads to be able to read brail etc. It made logical sense when I heard that but I have never seen it in print anywhere.

I live in England and have used Libre for about 3 years now continuously. I also self fund. I do not use skin tac or any other additional means to get the sensors to stick. I pay £96.00 per month. I don't feel Libre is particularly good and I have very significant issues with inconsistency of results. The thing is though the pads on the fingers on my left hand were almost destroyed prior to using it. On this basis alone it is worth it, at least it is for me.

 

[Fearless36]

Also to add, that although its not funded by my area, I have heard a rumour that it is possible for your GP to put a case to NHS England that would enable you to receive it via NHS prescription. I haven't dug deeper but it sounds promising that if you fit the criteria of risk (i.e. having no hypo awarenesses) and being at risk of danger then the local authority will make an exception. I haven't dug deeper yet but it is interesting.

 

[Diabeticliberty]

I was told off early on in my treatment for doing blood tests on the finger pads. You are not supposed to use the finger pads at all, rather the sides of the tips. Their reasoning is because should you lose your sight or go blind, you need your finger pads to be able to read brail etc. It made logical sense when I heard that but I have never seen it in print anywhere.

Hmmmmmm interesting. The 16 finger prick blood tests that the silly miles I have to drive every year. The silly things that 2 occupations force upon me and the silly lifestyle that I lead multiplied by being a type 1 for 34 years kind of force me into using the pads on my fingers. Using the sides stopped being a viable option about 18 months after diagnosis. Thank you for your suggestion though.

There appears to be a lack of acceptance that the NHS has no money. It cannot fund it's current commitments without adding the extra burden of Libre on it for all of us. It must be in a rather desperate state when Simon Stephens the current Chief Executive goes on public record pretty much begging for extra money to get them through winter. There are a lot of type 2 diabetics who cannot even get basic blood trsting equipment from the NHS. Some of them have to self fund. Some of them cannot afford it. This means that that they have absolute zero facility to test themselves. I am happy to continue paying for Libre as there are people around with far worse conditions than my type 1 diabetes who are struggling to get funding for some of their own treatments. What makes me or you or any of us a special case?

 

[Fearless36]

I am there with you and whilst not a driver, I type at a keyboard so fully get what you are saying about type 1 (and like you I’ve been one for 34 years too).

Its not so much about lack of acceptance on my part. Since moving onto the more concentrated insulins I have no hypo awarenesses at all. I have had hypos hit me on the way home from work and almost ended up under a train and got rushed to hospital as a result. Then forced to stay in overnight and if they had their way they would have kept me longer. Each hypo I have, if I am out and about at work or on way home from work costs them more money in the treatment of the hypos than it would to fund the Libre in my book so its more a preventative measure.

If I had the money to self fund it – I would do it without doubt but as it stands, spending that kind of money isn’t something I do normally on a day to day living basis let alone for healthcare.

Its not that we should be “special” cases, but that long term I think its more cost effective to fund these rather than deal with the consequences.

Now part of me, also thinks it’s a scam that these new insulins are more concentrated. As we’ve both been diabetics for the same amount of time, I’m sure you remember like I do that we used to use both the clear and cloudy insulins and mix them in the syringers ourselves. Likewise when pens were first introduced, I found them to be great and it was easier to balance my sugar levels then (and I was only injecting twice a day and carb counting them too). With these newer insulins I’m injecting 5x a day and still carb counting. Diabetes was in the past a manageable condition, and with the newer insulins it doesn’t feel that it has the same freedom and so we present more of a risk if we do hit hypos to the public. Maybe that’s just my take, but so be it.

 

[Diabeticliberty]

I am there with you and whilst not a driver, I type at a keyboard so fully get what you are saying about type 1 (and like you I’ve been one for 34 years too).

Its not so much about lack of acceptance on my part. Since moving onto the more concentrated insulins I have no hypo awarenesses at all. I have had hypos hit me on the way home from work and almost ended up under a train and got rushed to hospital as a result. Then forced to stay in overnight and if they had their way they would have kept me longer. Each hypo I have, if I am out and about at work or on way home from work costs them more money in the treatment of the hypos than it would to fund the Libre in my book so its more a preventative measure.

If I had the money to self fund it – I would do it without doubt but as it stands, spending that kind of money isn’t something I do normally on a day to day living basis let alone for healthcare.

Its not that we should be “special” cases, but that long term I think its more cost effective to fund these rather than deal with the consequences.

Now part of me, also thinks it’s a scam that these new insulins are more concentrated. As we’ve both been diabetics for the same amount of time, I’m sure you remember like I do that we used to use both the clear and cloudy insulins and mix them in the syringers ourselves. Likewise when pens were first introduced, I found them to be great and it was easier to balance my sugar levels then (and I was only injecting twice a day and carb counting them too). With these newer insulins I’m injecting 5x a day and still carb counting. Diabetes was in the past a manageable condition, and with the newer insulins it doesn’t feel that it has the same freedom and so we present more of a risk if we do hit hypos to the public. Maybe that’s just my take, but so be it.

Clear and cloudy insulins mixed in a syringe? That might be Humulin - S and Humulin - I mixed up in a big old 1ml insulin syringe? Oddly enough that was the regime that I was started on. Even more oddly it is the regime that I am still on. Periodically they ask me to change and they always meet the same reply 'Not on your life mate. Not for all the proverbial tea in the Far East' I am more than happy remaining on the old stuff. I know how both insulins affect me inside out. If you have been dragged kicking and screaming into the 21st century you really do have my sincerest sympathies. I personally do not want to go there. I also think that my doctor is quietly happy for me to use the old stuff as it is now cheap as chips. Best of luck with your Libre prescription quest. I really do think you will need lots of it

 

[Fearless36]

One of them was Humulin Monotard and I think the other was Humulin S. Yes I used to mix them in a syringe, however they quickly stopped getting prescribed and instead people were prescribed premixed insulins in a pen device (which made travel a lot more easier). I was told repeatedly that they discontinued those insulins so I was switched to a premixed (Novorapid) which was actually quite good. It was last year I was changed on to this basal bolus thing. Much against my will - I was again told they were discontinuing these insulins so it was either change or die (literally). On the older insulins I had hypo awareness so could stop them in the tracks as soon as I felt them, but on this newer stuff, the insulins are "apparently" more concentrated. So you don't have any hypo symptons at all until you are - well way under one and then its too late. When I wore the Libre, I could check this regularly and it warned me if the sugars were going down. I really dislike the new insulin but I'm being repeatedly told there is no way to avoid it (so I'm curious as to how you have avoided it).