Northerner
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Knowledge is power! 🙂
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Freestyle Libre petition
- Thread starter Northerner
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Flutterby
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- Type 1
I've signed and shared on facebook. This sounds like a wonderfully useful fantastical device (some of these words may not really exist) and I would love to have one. I struggle so much with my levels especially at the moment with hormones going mad. To know what was going on overnight would make me very happy.
Bessiemay
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- Type 1
That would be a lovely stocking filler.
Hope everyone who ordered get them soon. Please get people to vote 
DeusXM
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- Type 1
It's not 'voting'. This isn't like the X Factor where the choice with the most votes wins. It's a petition so if you've signed it once, that's your job done.
But as has been pointed out already, the Libre IS going to undergo trials through NICE and if those trials show that the device leads to improved control as compared to test strips, then it is likely to be funded. I don't want to sound dismissive but the petition will make no difference whatsoever until the completion of the NICE trials - the goal it's calling for is already in process.
What would be far more effective than signing a petition would be for those who currently have a Libre to proactively demonstrate how having more information improves their control. It's not enough to simply know what's going on all the time - you have to do something with that info, which was exactly Trophywench's point. Your body doesn't care if you have more information, even if your brain might. Your body only cares whether or not your glucose is under control.
The best way to get the Libre on the NHS is for all those people with one at the moment to knock a good few points off their A1c and have fewer hypos, by using that extra information to make the right, diet, lifestyle and medication dose choices. THEN go and see your endos, your doctors and your nurses and wow them with the results and show them how it is thanks to the Libre.
That will then present a groundswell of clinical anecdotes which will then get your care teams actively advocating the Libre. Actions speak louder than words and it is by taking actual action to improve your health, rather than just typing your name into a form, that will get the results we want.
So here's a new year's resolution for all those with a Libre - instead of signing petitions, improve your glucose control. That way you'll be helping yourself and the rest of us.
But as has been pointed out already, the Libre IS going to undergo trials through NICE and if those trials show that the device leads to improved control as compared to test strips, then it is likely to be funded. I don't want to sound dismissive but the petition will make no difference whatsoever until the completion of the NICE trials - the goal it's calling for is already in process.
What would be far more effective than signing a petition would be for those who currently have a Libre to proactively demonstrate how having more information improves their control. It's not enough to simply know what's going on all the time - you have to do something with that info, which was exactly Trophywench's point. Your body doesn't care if you have more information, even if your brain might. Your body only cares whether or not your glucose is under control.
The best way to get the Libre on the NHS is for all those people with one at the moment to knock a good few points off their A1c and have fewer hypos, by using that extra information to make the right, diet, lifestyle and medication dose choices. THEN go and see your endos, your doctors and your nurses and wow them with the results and show them how it is thanks to the Libre.
That will then present a groundswell of clinical anecdotes which will then get your care teams actively advocating the Libre. Actions speak louder than words and it is by taking actual action to improve your health, rather than just typing your name into a form, that will get the results we want.
So here's a new year's resolution for all those with a Libre - instead of signing petitions, improve your glucose control. That way you'll be helping yourself and the rest of us.
DeusXM
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No, it wouldn't.
NICE make decisions based on clinical efficiency. You could probably easily get 50,000 people to sign a petition to get some suspect homeopathic remedy on the NHS but it wouldn't make a difference unless it was proved to help.
The best door to knock on isn't Parliament (which has no role in choosing which medications the NHS provides), it's your own doctor's, with great results that can be clearly attributed to using the Libre.
I admire your enthusiasm but it is not enough to say "it's really good." You need to prove WHY it's really good for your health and that means more that "it can show me what my blood sugar does over time." It needs to be more like "thanks to the Libre, I found my blood sugar would climb through the night but return to normal in the morning. So I adjusted my basal dose and timing to eliminate that spike. My A1c has now dropped from 60 to 48, massively reducing my risk of long term complications."
If all the people on a Libre could report back a story like that, there would be very few problems getting the Libre on the NHS. That would do far more than signing a petition (which again, is something completely different from a vote).
Besides, having people blindly sign a petition could be more harmful than helpful - what if the genuine good news about the Libre gets overshadowed by a load of people with no actual experience of the device whatsoever blindly just signing a bit of paper? An uninformed signature instantly devalues the petition. The last thing you want is NICE to look at this petition and think 'hang on, how on earth do all these people really have any idea whether or not the Libre is genuinely good?'
Redkite
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- Parent of person with diabetes
I agree with DeusXM, a petition isn't the answer here. We need NICE to recommend funding for CGM technology, and that needs proper clinical evidence.
My own experience with my son has been a frustrating one of seeing the huge benefit of CGM (in his case Enlite sensors with his Veo) but having to self-fund and lacking enough funds! We are building a case based on data - comparing his control during weeks without CGM and weeks with it on. This is what the decision-makers want to see.
There also needs to be a proper assessment of the pros and cons of the different types of tech on offer. I've been following the Abbott Freestyle Facebook threads with interest - and what puts me off massively is the seemingly high incidence of people reporting allergic reactions at the insertion site. Many of these people used it with no problems at first but have gradually started to suffer skin reactions. My son has a lot of problems with eczema and skin sensitivity - he has to change his pump cannula every 2 days and can only keep an enlite sensor in for the basic 6 days (many self-funders get a lot longer out of each sensor), so it seems likely that the Freestyle would not suit him. That doesn't mean it shouldn't be available for others, of course, but if the allergic reaction is a widespread problem, Abbott need to address that issue before people start campaigning for it to be the CGM of choice!
My own experience with my son has been a frustrating one of seeing the huge benefit of CGM (in his case Enlite sensors with his Veo) but having to self-fund and lacking enough funds! We are building a case based on data - comparing his control during weeks without CGM and weeks with it on. This is what the decision-makers want to see.
There also needs to be a proper assessment of the pros and cons of the different types of tech on offer. I've been following the Abbott Freestyle Facebook threads with interest - and what puts me off massively is the seemingly high incidence of people reporting allergic reactions at the insertion site. Many of these people used it with no problems at first but have gradually started to suffer skin reactions. My son has a lot of problems with eczema and skin sensitivity - he has to change his pump cannula every 2 days and can only keep an enlite sensor in for the basic 6 days (many self-funders get a lot longer out of each sensor), so it seems likely that the Freestyle would not suit him. That doesn't mean it shouldn't be available for others, of course, but if the allergic reaction is a widespread problem, Abbott need to address that issue before people start campaigning for it to be the CGM of choice!
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I'm afraid that I agree that the petition is a bit of a white elephant, and unfortunately won't make a jot of difference (it is even addressed 'to NHS' which actually doesn't make any sense IMO).
However - to reassure you Redkite, I am on my third sensor and have had no skin reactions/discomfort at all and neither have I had any problems with the sticky coming unstuck. Sometimes I think those who have had problems shout louder than all the ones who have had no bother 🙂
However - to reassure you Redkite, I am on my third sensor and have had no skin reactions/discomfort at all and neither have I had any problems with the sticky coming unstuck. Sometimes I think those who have had problems shout louder than all the ones who have had no bother 🙂
Redkite
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- Parent of person with diabetes
That's true, lol! But there are quite a few different people starting to report this (some are on their 5th or 6th sensor and just seeing problems, after having no trouble initially). Lots of photos of sore skin and allergy rashes. Or perhaps Abbott have changed the adhesive for the latest batch?
Redkite
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- Parent of person with diabetes
That's great to hear AJ 🙂 and that was my original point, ie different technologies suit different people, so we need to show that via hard facts (ie BG data and Hba1c data), rather than petitioning for one particular item to be funded. I guess I'm always wary when people report issues, because my son and I have a number of allergies between us!
If 50000 people signed I would be knocking on those people that make paper to put your chips in ! As I have said in the past if I was a manufacturer of cgm I would be worried. I am on about 5th sensor & with zero probs. In the last 4 days I have been bang on target with results. Over Xmas !! Its very good 😎 You are in charge 😉
Those buying it at the moment tend to be proactive ,test frequently, double check with blood glucose monitors, record, analyse etc etc. I've found it excellent for showing trends; not so good for telling me where my glucose level is for meal time dosing and at bedtime. I've ended up checking on two different meters to get a feel as to exactly where my glucose levels are. That won't happen if it is more generally prescribed. People will be under the impression it works as stated and you can flash rather than test.
Prescribing authorities have to be certain that it confers benefits and there isn't a potential for harm.
I certainly feel that it is not consistently 'accurate' enough and that could be dangerous as it can lead to false assumptions
example: My last sensor was reading 36mg/dl lower ( ie 2mmol lower than the meters I used to check)
I went for a walk and felt hypo, the libre showed falling levels at 65mg/dl, I added on 36mg/dl and that put me with very normal non hypo levels.
Ten minutes later it read 54mg/dl and I checked with a meter which read 52mg/dl. My libre was being more accurate, than it had been for the last 5 days... but how was I to know when it was in the right ball park and when not?. It had told me I spent all night hypo and the meter suggested it was wrong yet on my walk it was apparently right.
The NHS shouldn't react to pester power however many signatures it gets, it needs to react to firm evidence.
Sometimes pester power does win in the UK but it doesn't mean that it's right. .
http://www.testingtreatments.org/tt-main-text/new-but-is-it-better/herceptin/
Prescribing authorities have to be certain that it confers benefits and there isn't a potential for harm.
I certainly feel that it is not consistently 'accurate' enough and that could be dangerous as it can lead to false assumptions
example: My last sensor was reading 36mg/dl lower ( ie 2mmol lower than the meters I used to check)
I went for a walk and felt hypo, the libre showed falling levels at 65mg/dl, I added on 36mg/dl and that put me with very normal non hypo levels.
Ten minutes later it read 54mg/dl and I checked with a meter which read 52mg/dl. My libre was being more accurate, than it had been for the last 5 days... but how was I to know when it was in the right ball park and when not?. It had told me I spent all night hypo and the meter suggested it was wrong yet on my walk it was apparently right.
The NHS shouldn't react to pester power however many signatures it gets, it needs to react to firm evidence.
Sometimes pester power does win in the UK but it doesn't mean that it's right. .
http://www.testingtreatments.org/tt-main-text/new-but-is-it-better/herceptin/
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AJLang
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- Type 1
Helen what you've written mirrors a conversation that I had with my partner today. As I've previously written the Libre has helped me a lot BUT it is not consistent. For tight control I want to know if I am 7.5 so that I can correct but eg the Libre can say 7.5 when my meter says 8.5 or it might say that I'm hypo when I'm not and vice versa. I think the Libre brilliant for trends, highlightings drops/rises in BG etc etc and for providing information during the night BUT I would not feel safe or able to get good control if I could not also do very regular BG testing with my meter.
Redkite
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- Parent of person with diabetes
Helen, you make a very good point! The Freestyle (and other CGMs) are currently mostly used by highly motivated individuals in addition to normal BG testing. It would NOT be a good thing if such devices were distributed as an alternative to meters and strips, and certainly there would be a need for proper patient education.
People need to get to know the limitations of their CGM device - for example my son is wearing an enlite sensor this week....yesterday we went out cycling, and we know from experience that the sensor can't keep up with rapidly dropping blood sugars when doing intensive exercise. So when it's reading 7mmol you can bet he's in the 4's already - it's still a useful tool, we managed to avoid hypos by the application of coke and chocolate cornflakes at the right moment!
People need to get to know the limitations of their CGM device - for example my son is wearing an enlite sensor this week....yesterday we went out cycling, and we know from experience that the sensor can't keep up with rapidly dropping blood sugars when doing intensive exercise. So when it's reading 7mmol you can bet he's in the 4's already - it's still a useful tool, we managed to avoid hypos by the application of coke and chocolate cornflakes at the right moment!
This gadget is brill ! Perfect results in the last few days. Was on exercise bike this morn & was 6.4 did 10 km on bike & was watching every couple of mins on Libre, Went down to 4.8 after ride. Its like I have never known 😎. I feel so much more in control 🙂
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