Luck with Libre

[Fearless36]

I'm actually really disgusted at the Libre scenario. For me, the reason why I got a device was that my hypo awareness has gone to zero since my former insulin being discontinued and thus the basal bolus was the next best thing. I used to inject twice a day and varied my insulin as I knew that really well. However the same isn't true for the basal bolus and I'm finding it very frustrating that I'm having to relearn everything. The zero hypo awareness is something that is a hazard in my opinion. I've had hypos on way home from work and been lucky in that I've been conscious something was going on and seeked help (and got rushed to hospital twice). The Libre for me, helped me avoid hypos, and whilst I've been told to inject 4 times a day, I have found that I'm unwilling to risk hypos and so have gone back to injecting twice a day for my own safety. Whilst the sugars being high are a bother to me - I much prefer them high than having hypos but am also aware them being high for long periods of time isn't a good thing either. Yet I see no other way around this for the time being. The fact I got given one, then told repeatedly it would be available on the NHS free and then found out it wasn't is a bit misleading. For one, the insulin I was on, that worked so well for me being discontinued is one thing, but then having a lifeline thrown and then withdrawn is another. I had the condition prior and it was perfectly controlled on the former insulin and so this has been a minefield of information to have to relearn and reabsorb again, and no doubt it will happen in another 10 years nonetheless from what I can gather.

 

[hh1]

Like Shelley, I was fitted with a free one sensor trial yesterday. My CCG has a list of criteria - about a dozen I think - which someone has to meet to get sensors on prescription. I fit all of them except I haven't had an HBa1c of 58 or lower in the last 6 months. The irony of this is unbearable; if I could keep it at that all the time I quite possibly wouldn't NEED a Libre!!!! The person in charge of the CCG budgets justifies this ludicrous decision on the grounds that if someone can achieve that level it means the person is motivated - HELLOOOOOOO!!!! Apologies for shouting but I cannot get my head round this at all

 

[novorapidboi26]

Like Shelley, I was fitted with a free one sensor trial yesterday. My CCG has a list of criteria - about a dozen I think - which someone has to meet to get sensors on prescription. I fit all of them except I haven't had an HBa1c of 58 or lower in the last 6 months. The irony of this is unbearable; if I could keep it at that all the time I quite possibly wouldn't NEED a Libre!!!! The person in charge of the CCG budgets justifies this ludicrous decision on the grounds that if someone can achieve that level it means the person is motivated - HELLOOOOOOO!!!! Apologies for shouting but I cannot get my head round this at all

So does that mean, in your CCG, you need to have an HbA1c of 58 or higher to get one?

 

[**shell**]

@hh1 that's crazy!
Surely an hba1c that is reducing shows motivation enough or an hba1c that is just not quite there.

I'm reading a book at the moment which I heard about through this app (Think Like A Pancreas) and I am paraphrasing here but he says to help get you the control you want you need the Skill, Motivation and the Equipment. Really that is all we are asking for, the equipment that is available to help us.

Glad to hear you got your free trial though! I'm just about to get mine. Eek!
X

 

[hh1]

So does that mean, in your CCG, you need to have an HbA1c of 58 or higher to get one?

No, completely the opposite - it has to be 58 or lower

 

[hh1]

@hh1 that's crazy!
Surely an hba1c that is reducing shows motivation enough or an hba1c that is just not quite there.

I'm reading a book at the moment which I heard about through this app (Think Like A Pancreas) and I am paraphrasing here but he says to help get you the control you want you need the Skill, Motivation and the Equipment. Really that is all we are asking for, the equipment that is available to help us.

Glad to hear you got your free trial though! I'm just about to get mine. Eek!
X

I'm sure it'll go well, mine was fine and already it's showing me things I had no idea about - what on earth goes on when I'm asleep?!

 

[novorapidboi26]

No, completely the opposite - it has to be 58 or lower

So you have to basically show that you are in control and can achieve good/reasonable numbers......?

why would they spend money on the people who in effect don't need the Libre's assistance...?

 

[Bluey1]

When they work they are great, but the failure rate is appalling, for me about 30% fail ,one sensor didn't even last a day, it gave errors and then finally failed, another 2 were not much better. Abbott want to hear about it, but won't do anything. I'm in the process of going onto the medtronic pump so I will swap over to their CGM. Assuming their failure rate is better they will work out to be cheaper and their customer service couldn't be worse than Abbott, that is impossible

 

[Damtov8]

For those people who cannot afford the Libre all the time I have a suggestion. Even if your doctor will not prescribe it for you , if you just buy the first kit and use it for one month you will learn a lot. This will probably cost you just over 100 pounds but it is a learning curve and well worth that investment. After that, now and again when you can afford it use it for the two weeks to see what is going on. It will give you a lot of information that will change your life even if you cannot wear it all the time. Use what you learned and your life will improve. Even just using it for two weeks every three months you will learn a lot about the foods that cause your spikes and are harming you.

 

[becca59]

So you have to basically show that you are in control and can achieve good/reasonable numbers......?

why would they spend money on the people who in effect don't need the Libre's assistance...?

We all need its assistance if we want it. Why should those who work their socks off with this disease be put at a disadvantage. In my opinion all children should be at the top of any queue. Followed by everyone else whether controlled or not.

 

[becca59]

When they work they are great, but the failure rate is appalling, for me about 30% fail ,one sensor didn't even last a day, it gave errors and then finally failed, another 2 were not much better. Abbott want to hear about it, but won't do anything. I'm in the process of going onto the medtronic pump so I will swap over to their CGM. Assuming their failure rate is better they will work out to be cheaper and their customer service couldn't be worse than Abbott, that is impossible

Have always had good customer service. With replacements when needed.

 

[novorapidboi26]

We all need its assistance if we want it. Why should those who work their socks off with this disease be put at a disadvantage. In my opinion all children should be at the top of any queue. Followed by everyone else whether controlled or not.

I agree kids should be at the top of the list....

Expecting everyone who wants one to get it is unrealistic.....I mean...in a perfect world yeah....money makes the world go round....

Should those who dont make an effort be given priority....?....

Lots of politics involved....

 

[hh1]

So you have to basically show that you are in control and can achieve good/reasonable numbers......?

why would they spend money on the people who in effect don't need the Libre's assistance...?

My point entirely....

 

[hh1]

I agree kids should be at the top of the list....

Expecting everyone who wants one to get it is unrealistic.....I mean...in a perfect world yeah....money makes the world go round....

Should those who dont make an effort be given priority....?....

Lots of politics involved....

I really have a problem with the idea that people with BG outside the desired range aren't making an effort. It may be true of some, for instance diabulimia, although I imagine that's a case where people wouldn't want a Libre (happy to be corrected on that). There are though many of us struggling with variable BG levels for what seem to be inexpicable reasons. Having literally just started with a Libre, I've already discovered that my BG varies overnight in ways I couldn't have known though it's too soon to see any pattern. I've set up daily charts to plot everything I eat, what I do for every hour of the day, mood, stress, times of eating and injecting and quantities of insulin (some of which I already did) to get the most complete picture I can of what may be influencing my control. I couldn't do this on a rolling 24 hour basis without CGM; it needs to be done over a period of weeks not days and even if I could get test strips on prescription or paid for, my fingers wouldn't stand the amount of testing I'd have to do. There are already days when I test up to 10 times if my BG is wildly out of whack in either direction and I couldn't cope with testing in excess of that for long enough to get significant results. We are all different and some of us don't get the results we want despite working as hard as we can with current technology; please don't make the judgement that less than perfect results mean that no effort is being made.

 

[novorapidboi26]

I really have a problem with the idea that people with BG outside the desired range aren't making an effort. It may be true of some, for instance diabulimia, although I imagine that's a case where people wouldn't want a Libre (happy to be corrected on that). There are though many of us struggling with variable BG levels for what seem to be inexpicable reasons. Having literally just started with a Libre, I've already discovered that my BG varies overnight in ways I couldn't have known though it's too soon to see any pattern. I've set up daily charts to plot everything I eat, what I do for every hour of the day, mood, stress, times of eating and injecting and quantities of insulin (some of which I already did) to get the most complete picture I can of what may be influencing my control. I couldn't do this on a rolling 24 hour basis without CGM; it needs to be done over a period of weeks not days and even if I could get test strips on prescription or paid for, my fingers wouldn't stand the amount of testing I'd have to do. There are already days when I test up to 10 times if my BG is wildly out of whack in either direction and I couldn't cope with testing in excess of that for long enough to get significant results. We are all different and some of us don't get the results we want despite working as hard as we can with current technology; please don't make the judgement that less than perfect results mean that no effort is being made.

None of what you have said here came out of my mouth....just like to point that out....

My statement about those making no effort was simply the polar opposite of what seems to be the criteria to get a libre where you are....which is to have a certain level of HbA1c and below...

 

[Fairygodmother]

For those people who cannot afford the Libre all the time I have a suggestion. Even if your doctor will not prescribe it for you , if you just buy the first kit and use it for one month you will learn a lot. This will probably cost you just over 100 pounds but it is a learning curve and well worth that investment. After that, now and again when you can afford it use it for the two weeks to see what is going on. It will give you a lot of information that will change your life even if you cannot wear it all the time. Use what you learned and your life will improve. Even just using it for two weeks every three months you will learn a lot about the foods that cause your spikes and are harming you.

I've just ordered one - it's advertised at 159.00 but for a T1 there's no VAT and the final figure, including postage, was £138. I've struggled to overcome regular climbing sugars which have to have correction doses and cgm seems a further tool to understanding the pattern. However, I'm now retired and the annual cost's had to be thought about long and hard: is life better with money spent on things that make for enjoyment or on something that'll possibly reduce the prospect of worse health later on? If I live that long. I'd like a pump too, but can't afford one and not sure I'd qualify for funding.

 

[winephil]

I live in France and I've had a Libre for three months, which my consultant gave me. It was approved as a fully refunded prescription device about six months ago. Don't think the take up has been very large at the moment because a number of health professionals have been very keen to look at my Libre. Libre truly is a liberation because it's discrete, instant and you can test as often as you like.

I also live in France and have been using the Libre for about 2 years. First I paid and since June this year free. However there are problems with some batches on the accuracy. I have just returned two sensors to Abbott because they were reading between 30% and 60% higher than my NEXT USB. My chemist says he has had a lot of problems reported. So fine when they work but need to check carefully

 

[Scott-C]

I also live in France and have been using the Libre for about 2 years. First I paid and since June this year free. However there are problems with some batches on the accuracy. I have just returned two sensors to Abbott because they were reading between 30% and 60% higher than my NEXT USB. My chemist says he has had a lot of problems reported. So fine when they work but need to check carefully

I recall when the French announcement was made, it included a bit about strips being restricted to a mere 100 per year except in cases of clinical need. Have you had any grief getting the same number of strips or have they been ok with it? Just trying to get some clues on whether authorities here will try that sort of thing - prescribe libre but corresponding reduction in strips.

PS - you lucky sod! Free libre and better food - vive la france!

 

[Scott-C]

@Fairygodmother , re your point about cost of it, might be worthwhile having a word with your local chemist.

In the link below, the Scottish based Insulin Pump Awareness Group, iPAG, has a page listing developments in each NHS Scotland area.

Interestingly, over the last few days, it's listed the names and addresses of various pharmacies which are said to be selling at £35, which is the price I recall NHS bulk bought it. Most of them seem to be small independents, but Lloyds is listed too. There's one near me, but haven't checked it out yet to confirm it's true.

The page is obviously dealing with the Scottish context, I've no idea if this is happening elsewhere in UK, but, if it's true, it looks like some chemists are saying here's a new product to sell, so I'll sell it. No harm in asking your local chemist what their take on it is - £70 per month is way better than £100 per month!

http://www.ipag.co.uk/abbott-freestyle-libre-prescribing-around-scotland/

 

[petdell]

I asked in my local Lloyds yesterday if the sensors were available to buy from them. The pharmacist checked, and said they weren't on there drugs list. I'm in the west midlands.