# Freestyle Libre petition



## Northerner (Nov 7, 2014)

There is a petition to get the Freestyle Libre on prescription from the NHS by 2015, stick your moniker on it! 

https://you.38degrees.org.uk/petitions/freestyle-libre-on-the-nhs


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## KookyCat (Nov 7, 2014)

Monikered


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## AJLang (Nov 7, 2014)

Signed and shared on Facebook


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## HOBIE (Nov 7, 2014)

Did done didit


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## Northerner (Nov 7, 2014)

I'm hoping that the trial I will be involved in means they are heading in that direction  My consultant described it as the 'next step' in blood glucose monitoring. When you think about it, the consumables/sensors are £48 each and last 14 days. Hopefully, if they eliminate the need for some tests and help improve control then there will be savings to be made both in strips and interventions, plus the NHS would no doubt get a substantial discount on the price.

It's a no-brainer!


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## AJLang (Nov 7, 2014)

It will be great as long as GPs don't use it as a reason to not prescribe test strips at all. Based on my Limited experience so far I would probably still need to do a minimum of six finger prick tests a day as the Freestyle isn't as accurate.... But that would still be a good reduction in finger pricks. Of course if they could improve the accuracy of the Freestyle that would be even better.


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## everydayupsanddowns (Nov 7, 2014)

Signed. Though I'm pretty sure this isn't how funding is approved, a decent showing will keep the profile going. 

Last I heard they were hoping for prescription to be available within a year or two, though the person who heard that from the rep did say it just sounded like 'marketing fluff'


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## Lindarose (Nov 7, 2014)

Signed Hope it helps as it looks like a really good device


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## Pumper_Sue (Nov 7, 2014)

As I understand it this monitor is not approved by the DVLA for monitoring so do make sure you use ordinary bs monitors if you drive.


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## qwertyfan (Nov 7, 2014)

signed also.
common sense v's market economics....who knows the outcome?!


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## Flower (Nov 7, 2014)

I really hope this technology is successful and accurate. At some point there has got to be a seismic shift from approx 20% budget spent on treatment v 80% on complications. 

I know I had to jump through fiery hoops to get funding for CGM and I have to keep showing it is working for me - in terms of a reduction in severe hypos and an improved HbA1c.

I hope the clinical trials of the Libre show good results and improvements for overall control and maybe, just maybe, there are some forward thinking CCGs willing to invest in new treatments.


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## trophywench (Nov 7, 2014)

Dunnit.

Every little helps !


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## HOBIE (Nov 8, 2014)

Got email from Julie thanking for signing   I would vote for her !


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## HOBIE (Nov 8, 2014)

Now up to 1802 of 2000   If you have not signed yet pls do


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## AlisonM (Nov 8, 2014)

Signed it just now.


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## Riri (Nov 8, 2014)

Done and dusted - Signed


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## HOBIE (Nov 8, 2014)

Double well done Alison ! Hope your on the mend & going in the right direction


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## HOBIE (Nov 8, 2014)

1917 have sighed of 2000 not many more needed.  Power of the people & all !


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## HOBIE (Nov 8, 2014)

1930 not many more now. Pls help if you can


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## HOBIE (Nov 8, 2014)

38 where viewing this post last time I looked


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## Northerner (Nov 8, 2014)

HOBIE said:


> 38 where viewing this post last time I looked



Not all of them are humans Hobie, a lot will be search engine 'bots' indexing information. When the 2000 is reached the petition will set a new target


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## Pattidevans (Nov 8, 2014)

Signed... it was 1969  just now.


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## HOBIE (Nov 8, 2014)

Northerner said:


> Not all of them are humans Hobie, a lot will be search engine 'bots' indexing information. When the 2000 is reached the petition will set a new target



Made me smile Northy.  Aliens from outer space    It might not suit a lot of people but can you pls  sign form does not take long Honest


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## Bessiemay (Nov 8, 2014)

Signed on facebook


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## HOBIE (Nov 8, 2014)

Well done to all our members who signed.   2057 up to now & still going   Come all you Aliens  (See prev post)


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## HOBIE (Nov 8, 2014)

As Bessiemay says also on Facebook & Twiter


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## m1dnc (Nov 9, 2014)

Signed. Well over 2000 now - next target 3000.

I've been using one for the last 2 weeks. Now giving me a much better insight into how my levels fluctuate and basals. Brilliant device. Results are very close to my Combo meter - certainly within the error limits expected for BG meters.


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## Northerner (Nov 9, 2014)

m1dnc said:


> Signed. Well over 2000 now - next target 3000.
> 
> I've been using one for the last 2 weeks. Now giving me a much better insight into how my levels fluctuate and basals. Brilliant device. Results are very close to my Combo meter - certainly within the error limits expected for BG meters.



That's great news David!


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## graj0 (Nov 9, 2014)

Signed. Shared on FB


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## HOBIE (Nov 9, 2014)

2375 now. I have been emailing peeps , I bet a lot is from this forum


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## HOBIE (Nov 9, 2014)

2318  now Pls get emailing


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## HOBIE (Nov 9, 2014)

2435 pls keep going


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## HOBIE (Nov 9, 2014)

"2528" Its getting better  Please sign up. That includes you Aliens out there


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## AJLang (Nov 9, 2014)

Please sign this petition, we all need the sensors (and handset) on prescription. I got my Freestyle Libre on Friday and it has helped me loads.  To see how it has helped please see my comments on the Freestyle Libre post. Please also share the petition on Facebook and Twitter.  One example - I was having a nice lie in this morning and felt fine but thought that I would scan my arm with my Freestyle Libre 2.8 BG finger pricking test confirmed the result. It has also just stopped me from having another hypo.


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## HOBIE (Nov 9, 2014)

Good thing Amanda  Tech is getting better & better every day


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## Bloden (Nov 9, 2014)

HOBIE said:


> "2528" Its getting better  Please sign up. That includes you Aliens out there



Even us legal aliens? Great going guys.


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## HOBIE (Nov 9, 2014)

Hi Bloden. I named them Aliens cos of what northy said. Strange people on the web.  Prob Chinese mutetants or similar. You have to use your imagination    Once again thank you to all who took part in the signing. Still going


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## MacG3 (Nov 9, 2014)

I can't believe you guys got me to sign a 38 degrees petition. I suppose I'm now technically a communist


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## HOBIE (Nov 9, 2014)

Well done MacG3 !


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## Northerner (Nov 9, 2014)

MacG3 said:


> I can't believe you guys got me to sign a 38 degrees petition. I suppose I'm now technically a communist



Welcome to the fold comrade MacG3


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## ch1ps (Nov 9, 2014)

Signed and shared on FB & Twitter


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## mum2westiesGill (Nov 10, 2014)

Signed


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## astbury1 (Nov 10, 2014)

Hiya I will sign this as I do believe the NHS should fund these things however I do not understand really what the difference is from the dexcom g4? NHS wont approve that which is as cheap and by the reviews I have seen with the libre the dexcom seems more accurate. Is this not a CGM? Am confused! The dexcom sensors last 2 weeks and are the same price

Can anyone explain why this is so different to a CGM if it is not one?


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## astbury1 (Nov 10, 2014)

I thought CGMs were not allowed on NHS? I have to fund mine. How did you manage to get yours funded? Excellent that you have got this


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## astbury1 (Nov 10, 2014)

The above last message was meant to directed to 'Flower'


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## Northerner (Nov 10, 2014)

astbury1 said:


> Hiya I will sign this as I do believe the NHS should fund these things however I do not understand really what the difference is from the dexcom g4? NHS wont approve that which is as cheap and by the reviews I have seen with the libre the dexcom seems more accurate. Is this not a CGM? Am confused! The dexcom sensors last 2 weeks and are the same price
> 
> Can anyone explain why this is so different to a CGM if it is not one?



It's basically a step up from an ordinary meter and not quite a CGMS  Are Dexcom sensors guaranteed for 15 days? I thought it was much less, plus the Dexcom receiver costs hundreds more and is guaranteed for a much shorter period, I think


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## HOBIE (Nov 10, 2014)

Well done to all who have signed


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## astbury1 (Nov 11, 2014)

ahhh I see I shall take a better look at it. I have signed the petition i think we deserve it!


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## HOBIE (Nov 11, 2014)

Can everyone please use this post to talk about it !   Might get a few more sign ups !   Please


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## HOBIE (Nov 11, 2014)

3402 now


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## heasandford (Nov 11, 2014)

love it, love it, love it!	 Just one day's example of matched results - 
time          meter	sensor difference
07:00	9.9	8.7	  1.2
08:05	5.0	4.3	  0.7
10:00	7.4	7.4	  0
11:58	7.9	5.8	  2.1
14:00	6.9	7.1	  -0.2
15:59	6.7	6.4	  0.3
18:02	6.9	6.6	  0.3
18:31	6.3	5.6	  0.7
20:23	4.9	4.5	  0.4
22:13	6.7	6.7	  0

average	6.86	6.31	  0.55
SD	        1.43	1.33	  0.68

and the arrow showing which way your BG is going plus the on-screen graphs make it all so much easier to understand!


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## Northerner (Nov 11, 2014)

Looks pretty accurate to me, especially when you consider that two fingerprick readings taken at the same time as each other will probably display similar disparities


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## HOBIE (Nov 11, 2014)

Agree Astbury


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## astbury1 (Nov 12, 2014)

Looks ace. I really hope the NHS support this. Could I ask a few questions about it??? considering trying one as my fingers look like they have craters in them lol... also if it is cheaper than CGM it is worth me considering. And I like gadjets lol!

1) Does it have a delay at all like CGMs?- looking at your results it doesnt seem to?
2) Does it measure the same fluid as a cgm?
3) If so how come this is ok to use instead of taking a proper blood metre test where with a cgm you are told definitely not to reply on it when making insulin descsions? Is this metre slightly different?
4) I note some saying that DVLA will not allow it and still have to do blood test?
5) How does it take more readings then the ones that are scanned??
6) The arrows showing trends are these like the CGM ones? For example you take a reading and get a reading or 5.5 but it indicates a 5.5 and falling or 5.5 and stable?? 
 Additional Question-Has anyone spoken about it with their diabetes team? have they given any indication that it may be funded? What are their thoughts on this new machine? Curious!

I am very tempted to treat myself to an early xmas present!


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## HOBIE (Nov 12, 2014)

4000 signatures now keep it up


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## HOBIE (Nov 13, 2014)

Like you Astbury Xmas is coming so ive heard


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## Northerner (Nov 13, 2014)

astbury1 said:


> Looks ace. I really hope the NHS support this. Could I ask a few questions about it??? considering trying one as my fingers look like they have craters in them lol... also if it is cheaper than CGM it is worth me considering. And I like gadjets lol!
> 
> 1) Does it have a delay at all like CGMs?- looking at your results it doesnt seem to?
> 2) Does it measure the same fluid as a cgm?
> ...



1 - The delay is there, but an algorithm is used to 'correct' it to match a blood reading.
2 - Yes, it reads the interstitial fluid.
3 - I think you are still advised to confirm with a blood test before injecting. The meter can also be used for blood and ketone testing, so one device for all uses.
4 - Yes, you still need blood tests for DVLA.
5 - It automatically takes a reading every couple of minutes and stores these. When you 'scan' it shows you the latest reading and a trend arrow. You can download the data to see all the tests it has done, and there are graphs available on the device to show the pattern since last scan.
6 - Yes, I think this is the case, arrows show rising or falling levels (and graphs would probably confirm).

My consultant has asked me to participate in a clinical trial of the device, probably in a few weeks time. He was very enthusiastic about it, so it looks like it is attracting positive attention in the right places! 

Note: I haven't used it yet, this is just what I have picked up from reading about it, so if I am wrong about anything, please correct me!


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## HOBIE (Nov 13, 2014)

That sounds very positive Northy.  Please if you have not signed yet "Give it a wiz" only takes a min & might do some good for us lot


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## HOBIE (Nov 13, 2014)

4022 now & there are 33 people viewing !  Come on you Aliens - On the first post of this tread. Does not take long & would benefit so many !   Thanks in advance !


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## astbury1 (Nov 13, 2014)

Thanks for the responses. I soooo want one! gimmie gimmie. I have facebooked the pertition. LETS DO THIS!


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## heasandford (Nov 13, 2014)

I have my first annual pump review with new consultant so will be enthusiastically promoting. Since I had the Libre (just this month) my time 'in target' is higher than it has EVER been!

(One thing is that it does highlight intractable problems eg that insulin is far too slow! Making adjustments still takes over an hour, and predicting what might happen during that hour is always an issue. But I still love it!)


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## astbury1 (Nov 13, 2014)

Interestingly I will be having my review tomorrow and I am going to mention this petition.

I know what you are saying about insulin. I find it slow. It is all very well correcting a high however still takes forever to come down. grrrr

Im finding with my pump what is all fine one day is not the other.........I wouldnt mind but I practically do the same thing everyday!

This is why I have my CGM however this libre metre sounds excellent. Considering my fingers are constantly hurting too it will be wellcome break.....and am kinda sick of bleediny everywhere on my desk lol!


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## HOBIE (Nov 13, 2014)

I was once in Hosp, bored & nothing to do & went through 50 odd test strips in 2 days to get a picture of where I was bg related. Sore mits   Hope reviews go good.


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## Phil65 (Nov 13, 2014)

Signed and shared on Facebook


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## HOBIE (Nov 13, 2014)

Good stuff Phil !  Thank you


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## trophywench (Nov 13, 2014)

Had an email saying it's over 4,000 sigs, but they still want more please!


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## everydayupsanddowns (Nov 13, 2014)

Am I right in thinking there are around 300,000-350,000 T1s?

Still lots more people to persuade Hobie!


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## HOBIE (Nov 13, 2014)

I am doing my best ! Thanks Mike.  I really fancy one for xmas.  .  In the 48 yrs I have only had cgm for a few days & I never got to see the results before they where lost.


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## HOBIE (Nov 13, 2014)

4200 now TW. I have just been emailing the link to as many people that know how hard we all try to look after our selves, they inc my Dsn & people that know the right type.  Pls keep at it


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## HOBIE (Nov 14, 2014)

4305  It is easy to pass it on to people you know.  Julie has put a way of how to do it.  It could be cheaper for NHS if we buy the reader & they supply bit that goes in your arm.


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## astbury1 (Nov 14, 2014)

Just thought I would let you know I went to the hospital to day and asked about the freestyle libre...they said that they had been given 3 and they were going to trial them to see how accurate they were. I did inform them of the petition  and that us diabetics really want this. I also informed them of the people on here that had tried them and pointed out they were pretty spot on and that they would be excellent! They said they are definitely looking into it however would take atleast 2 years to be able to get NHS to agree.........really? that long?   My name has gone into a pot to trial...fingers crossed


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## Northerner (Nov 14, 2014)

astbury1 said:


> Just thought I would let you know I went to the hospital to day and asked about the freestyle libre...they said that they had been given 3 and they were going to trial them to see how accurate they were. I did inform them of the petition  and that us diabetics really want this. I also informed them of the people on here that had tried them and pointed out they were pretty spot on and that they would be excellent! They said they are definitely looking into it however would take atleast 2 years to be able to get NHS to agree.........really? that long?   My name has gone into a pot to trial...fingers crossed



The wheels of bureaucracy turn slowly  But, at least they are looking seriously at it! I hope you get picked for the trial!


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## trophywench (Nov 14, 2014)

It's all to do with cash I'm afraid - as per usual.

My clinic has a CGM you can put your name down for as a loaner.  I was due to have it but couldn't since they had run out of sensors and couldn't have any more till the next financial year started ....... so I offered to pay for mine, cos a one-off of £65 I could manage, even rang the company - not allowed .......


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## HOBIE (Nov 14, 2014)

If 90,0000 signed the petition it would help so keep going please


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## HOBIE (Nov 14, 2014)

Ordered the Beast !  is cheaper without the vat


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## Northerner (Nov 15, 2014)

HOBIE said:


> Ordered the Beast !  is cheaper without the vat



Excellent Hobie! Do let us know how you get on with it


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## AJLang (Nov 15, 2014)

Freestyle Libre has identified patterns during the night which I wasn't aware of that were putting my BGs higher than I realised followed by a sharp drop.  It has led to me making basal changes that I wouldn't have known that needed


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## AJLang (Nov 15, 2014)

HOBIE said:


> Ordered the Beast !  is cheaper without the vat


Well done Hobie


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## HOBIE (Nov 15, 2014)

Thanks everyone ! I feel like when I was getting my pump. Something new & for the good . Info  is always good. & I don't think I have had a pattern in my life. But who knows


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## HOBIE (Nov 15, 2014)

4484 now If everyone got two of there relatives to sign it would make a big difference !  Pretty please


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## HOBIE (Nov 15, 2014)

Why cant people use this post to talk about it.  MORE publicity the better. More votes


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## Pumper_Sue (Nov 15, 2014)

If you read this article http://www.theguardian.com/lifeandstyle/2014/nov/14/new-gadget-end-hypo-world-diabetes-day you will see it is being trialled.
Read last paragraph.


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## HOBIE (Nov 15, 2014)

Thanks Sue. The more votes the better for us all


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## HOBIE (Nov 15, 2014)

Bump Bump


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## trophywench (Nov 16, 2014)

Yes I saw a list of where it was being trialled - possibly on the press release for Abbott but can't recall now - I know Birmingham was one but can't recall the other ones.

Trials are due to finish in July as I said.


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## Northerner (Nov 16, 2014)

trophywench said:


> Yes I saw a list of where it was being trialled - possibly on the press release for Abbott but can't recall now - I know Birmingham was one but can't recall the other ones.
> 
> Trials are due to finish in July as I said.



<raises hand> I'm going to be involved in trialling it, hopefully soon!


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## Pumper_Sue (Nov 16, 2014)

Reading another forum, the reports on the libre are damming. People are asking for their money back. Meters and sensors are faulty. Abbot have also stopped taking orders as well.


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## Northerner (Nov 16, 2014)

Pumper_Sue said:


> Reading another forum, the reports on the libre are damming. People are asking for their money back. Meters and sensors are faulty. Abbot have also stopped taking orders as well.



Interesting - the responses here all appear to have been positive!


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## AJLang (Nov 16, 2014)

I've had a VERY bad time with BGs recently and the last week with the Freestyle Libre has probably saved me from being very ill - no exaggeration. For example when I woke up this morning at 6.45 I was c. 10 with both Freestyle and blood testing equipment. I normally wouldn't have done another BG test but as I had the Freestyle I scanned myself 20 minutes later to see that I'd jumped to c.13 which I confirmed with a blood test and corrected. I then scanned myself 20 minutes later 15.5 ie from 10 to 15.5 in 40 minutes. I would not have done finger prick tests in this time. If I hadn't scanned myself with the Freestyle I wouldn't have known that it was shooting up so fast.  Overall it isn't 100% accurate but neither is blood testing.  I now wouldn't swap my Freestyle for anything else as long as I can do finger pricks if there appears to be problems or when I bolus. It has also picked up problems with my overnight basal which I was not aware of, highlighted a 2.8 that I wasn't aware of and is very close/the same as finger prick tests the majority of the time. I did have a cannula that wouldn't insert and they replaced it with no problem at all.


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## m1dnc (Nov 16, 2014)

I too have had very good results with the Libre. I compared the results against my Accu-Chek Combo meter and they were consistently within the error tolerances of both machines.

I guess it is possible that some of the posters on the other forum are expecting too much. The permitted error of patient-use BG meters is plus or minus 20% of the 'true' value. So if, at any particular moment, your true BG amount was 10, a meter reading anywhere in the range of 8-12 would be acceptable (at least to the manufacturer). So you could have the situation that the Libre was reading 8 and the conventional finger-stick meter was reading 12 and that would be OK.

In practice, I found that the two machines were much closer than that - which is consistent with the current expectation that BG machines generally work with an error range of 10-15%. I haven't done a statistical analysis of the results I recorded but a rough review suggested that they were generally within less than 10% of each other. Interestingly, I found that the Libre results tended to be consistently slightly lower than those from the Combo meter, but I think the Combo has a bit of a reputation for reading a bit on the high side.

However, I will still use the finger-stick meter to calculate meal and correction boluses. (Not least because the Combo meter does it for me.) What the Libre is very useful for is for checking basals and rapid changes. And, of course you can check your BG through your clothes in an instant.


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## HOBIE (Nov 16, 2014)

I have only heard good as well. I whish I could trial one !   I bet all test strip firms are panicking & causing a stir   There will a lot of them short on sales ?


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## HOBIE (Nov 16, 2014)

There is 40 people viewing this post. Can you please vote !  Tomorrow I am taking time out to do something for Diabetics. Have a look at Events.  I am up early to travel there before 8.30 (knowing me will be there 8). It is mainly for T2 diabetics & what is not bad for them. It is education for all. I am deff not getting paid for this but is for the community  Pls sign if you can


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## HOBIE (Nov 16, 2014)

Am running out of things to promote this post.  I know everyone wants to talk about diff things but we need more votes pls


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## HOBIE (Nov 16, 2014)

4706 now  A lot of strip makers will be worried. If I was the manager of one of those firms I would be making my own Libra


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## HOBIE (Nov 16, 2014)

If you know anybody at work this week, can you get them to sign pls.


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## Bessiemay (Nov 16, 2014)

HOBIE said:


> If you know anybody at work this week, can you get them to sign pls.


You are doing a grand job Hobie.


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## HOBIE (Nov 16, 2014)

Thank You Bessiemay. If we all help each other these things work.


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## HOBIE (Nov 16, 2014)

Who do you think will be the next manufacturer to make this type of thing ?


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## Pumper_Sue (Nov 16, 2014)

As I stated earlier if you read this http://www.theguardian.com/lifeandst...d-diabetes-day  you will find the meter is being trialled ready for NICE approval.
So basically the petition is a waste of time as things are already moving slowly but surely in that direction.


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## Pattidevans (Nov 17, 2014)

Your link didn't work for me Sue, but when I got to the guardian site I just googled Freestyle Libre and got to the page http://www.theguardian.com/lifeandstyle/2014/nov/14/new-gadget-end-hypo-world-diabetes-day


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## DeusXM (Nov 17, 2014)

> Who do you think will be the next manufacturer to make this type of thing ?



I suspect all the big manufacturers have something in their R&D labs and while I'm excited about the Abbott device, I think it's these companies we need to be really watching.

The Libre has been really obviously priced to keep it at the top end of costs that are likely to be paid for by national health care services and in the States, private insurance. The financial argument for the Libre is actually more solid than test strips at the moment because it removes the issue of patient compliance. Docs can be skeptical about unlimited test strips because often they're not convinced people use the information to any real benefit. But if the Libre collates all the information, that can then be given to the care team and it cuts out all the usual "oh, I forgot to test" or "oh, yes, all my reading has been fine" shenanigans doctors often face from patients. It basically removes anecdote from the entire equation. It also partially removes the need for an A1c - who needs a three month average based on an imperfect result when you can see everything.

That means, assuming the Libre performs as it's supposed to (and that's a big assumption), I would be very surprised if it doesn't make it through the NICE approval process.

That's where things get interesting, because it means the mass market for test strips dies in the UK (and likely the US and EU as well), except for the minor calibration/double-check tests. That means if other pharmaceutical companies want to compete, they HAVE to develop their own Libre equivalent. The Libre is what you could probably call a first generation device of its type. It's the first iPhone. As a general rule, the first generation of anything is generally a bit flaky. The second generation one will be a vast improvement, and it'll be the other manufacturers who'll bring the next generation along AND they'll be obliged to price it to compete with the Libre. That means the Libre will then come down in cost and you'll see a price war with the manufacturers. All of this means that by 2020 you'll probably have versions of the Libre that are priced effectively to secure NHS funding and will likely not require calibration. They'll also probably have smaller sensors too.


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## m1dnc (Nov 17, 2014)

Speaking as a retired patent attorney with many years experience of the pharma world, I bet most of the other manufacturers have their patent people combing through Abbott's patent portfolio to find a way to bring out competing products. If they're not successful, Abbott could have market exclusivity for many years to come. But from my experience, I'll put good money that they will find a way.


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## graj0 (Nov 17, 2014)

Signed by me. I get the impression that no matter how worthy the cause, the NHS is skint. So, where's the petition to encourage HMG to increase the basic rate of tax to pay for anything not presently available. I'd like to think that I'm being reasonable, there's more money coming out than going in, simple arithmetic.


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## everydayupsanddowns (Nov 17, 2014)

DeusXM said:


> That means, assuming the Libre performs as it's supposed to (and that's a big assumption), I would be very surprised if it doesn't make it through the NICE approval process.



My guess (and it's a reasonably educated one with what I know about the NICE process) is that the tipping point for NICE to consider the Libre as a valid form of therapy for general use will revolve around two main things:

1. Whether the Libre is shown in Randomised Control Trials to reduce HbA1c and/or Severe Hypoglycaemia
2. Cost

Potentially you could add 'patient satisfaction' to that, but it would not have anything like the weight.

If they can get RCT data that shows a decent average A1c reduction (0.7% or 1% perhaps) alongside a reduction in mild and severe hypoglycaemia then it's an easy call for them to make.

If it just helps people 'feel better' but there are no data to show A1c reduction, then the economic model of 'amount of money potentially saved by avoiding future complications' just doesn't balance out with the upfront cost.

It's a shame - but there it is. More expensive options need to be more robustly defended by trial data to make the cut.


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## Northerner (Nov 17, 2014)

graj0 said:


> Signed by me. I get the impression that no matter how worthy the cause, the NHS is skint. So, where's the petition to encourage HMG to increase the basic rate of tax to pay for anything not presently available. I'd like to think that I'm being reasonable, there's more money coming out than going in, simple arithmetic.



If only governments could take a longer term view. Better equipment, support and education for people with diabetes (and the healthcare professionals who support and treat them) would slash the billions currently spent on the largely avoidable complications suffered by so many. It won't eradicate them, because you'll always get non-compliant or unlucky patients and bad HCPs, but they could make a big dent in the £10bn spent on diabetes, and that money could be used to enhance peoples' quality of life. Where is the £2.5bn in fines to the banks for the forex rigging going to go? Can you think of a better target for that money than the NHS?


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## trophywench (Nov 17, 2014)

I don't think you could dump your meter at all.  

If you think you're going hypo (however you found out, by how you feel/behave or you scanned and got a downwards arrow) you HAVE to use it, you need to know what your BG is right now this second, not 10 minutes ago!  And the DVLA don't use interstitional fluid testing, only blood testing so at the moment, all your driving specific tests must be followed.  Abbott specifically say this.  They've asked DVLA and they said No.  My Combo meter is the thing that works out my IOB so personally I'd not inject insulin - bolus or correction - without testing my blood.

In time, it may be agreed that it's accurate enough to save doing an A1c.  However - that would actually mean not only providing every single diabetic with a Libre but also full-time sensors, and FORCING them to stick sensors in, FORCING them to scan every 8 hours at least, otherwise you'd never get a full 24hrs info - then have someone to review the Libre results, to make sure anyone's A1c wasn't more than whatever they said at the time it should be.  

I think that wouldn't work anyway, would be more expensive still than at present and wouldn't happen anyway, even in a month of Sundays !


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## HOBIE (Nov 17, 2014)

m1dnc said:


> Speaking as a retired patent attorney with many years experience of the pharma world, I bet most of the other manufacturers have their patent people combing through Abbott's patent portfolio to find a way to bring out competing products. If they're not successful, Abbott could have market exclusivity for many years to come. But from my experience, I'll put good money that they will find a way.



That's what I think & said !  They will ALL be looking at this with great interest if they have any brains ! The more votes the more clout  I have got her indoors to put it on her farsebook (sorry).  Keep going


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## HOBIE (Nov 19, 2014)

Libra has arrived. Bang on time from friendly delivery driver   Ask me if I am chuffed.  Kid at Xmas.  Got some reading to do.    Pls keep voting & make some noise. Its cheaper for Nhs


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## Northerner (Nov 19, 2014)

HOBIE said:


> Libra has arrived. Bang on time from friendly delivery driver   Ask me if I am chuffed.  Kid at Xmas.  Got some reading to do.    Pls keep voting & make some noise. Its cheaper for Nhs



Great news Hobie! Let us know how you get on with it


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## HOBIE (Nov 19, 2014)

5757 Now its a lot but need more ! Pls ask you family members to give it ago


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## DeusXM (Nov 19, 2014)

> If it just helps people 'feel better' but there are no data to show A1c reduction, then the economic model of 'amount of money potentially saved by avoiding future complications' just doesn't balance out with the upfront cost.



I don't disagree at all and you're also closer to this than me so your experience trumps mine. I do wonder though if convenience may play a part. My understanding is that pens and cartridges are more expensive than syringes and vials (although I could be wrong), but the NHS wouldn't dream of sending a newly dxed person home with a bag of syringes.


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## HOBIE (Nov 19, 2014)

5910 Keep at it please, is going up


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## everydayupsanddowns (Nov 20, 2014)

DeusXM said:


> I don't disagree at all and you're also closer to this than me so your experience trumps mine. I do wonder though if convenience may play a part. My understanding is that pens and cartridges are more expensive than syringes and vials (although I could be wrong), but the NHS wouldn't dream of sending a newly dxed person home with a bag of syringes.



No - you are absolutely right. Patient experience will count. But I'm just not quite convinced that on its own that would carry £1,250's worth of benefit a year to the NHS - especially since you would still need moderate fingerstick coverage (driving, double checking).

I do have high hopes that it will be approved for use in some cases -  impaired awareness of hypoglycaemia... multiple severe hypos... multiple A&E visits... - but much like CGM I suspect it will be for 'special cases' rather than a blanket thing that everyone can just ask for. Would be nice though!  

I trialled sensors for 28 days and it made a HUGE difference to me. I will be buying more as and when I need/can afford them.


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## HOBIE (Nov 20, 2014)

Over 6000 now !  Thank you all if you have got someone at work today


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## gewoff (Nov 21, 2014)

Signed with gusto!

Maybe I've missed this, but how much do these devices cost please?


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## Northerner (Nov 21, 2014)

gewoff said:


> Signed with gusto!
> 
> Maybe I've missed this, but how much do these devices cost please?



Starter pack (reader plus two sensors) £133.29 + VAT
Then £48.29 + VAT per sensor
Having diabetes we have VAT exemption on medical items

Sensors last for 14 days


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## gewoff (Nov 21, 2014)

Wow! That's a prompt reply, but an an expensive piece of kit.....

Say one starter pack and twenty five sensors a year at £48 a time, gives over £3,000 per annum - I hadn't realised that it would be so expensive......

Presumably NICE are considering this

I try to keep more aware!


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## Northerner (Nov 21, 2014)

Slightly wrong with your calculation - 25x48=£1200


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## gewoff (Nov 21, 2014)

Northerner said:


> Slightly wrong with your calculation - 25x48=£1200



Whoops! Too early in the morning.......


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## Northerner (Nov 21, 2014)

gewoff said:


> Whoops! Too early in the morning.......



I had to check with a calculator!


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## trophywench (Nov 21, 2014)

A lot cheaper than a Dexcom etc - which is why people are going for them bigtime.


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## HOBIE (Nov 22, 2014)

Please keep them votes coming in


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## HOBIE (Nov 23, 2014)

6300 Now so well well done to everyone who have signed BUT . More needed  I know Rome was not built in a day but please sign if you can & get others to join in. A lot have already done it


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## HOBIE (Nov 23, 2014)

Please keep signing


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## HOBIE (Nov 23, 2014)

trophywench said:


> A lot cheaper than a Dexcom etc - which is why people are going for them bigtime.



I have heard they are running short of the demands of people.


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## HOBIE (Nov 23, 2014)

If you go to 1st page of this post that Northy did there is a web site that you open.  you can then vote


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## Pumper_Sue (Nov 23, 2014)

trophywench said:


> A lot cheaper than a Dexcom etc - which is why people are going for them bigtime.



Are they though? I have a sensor from Dexcom that's been stuck in my arm for well over 4 weeks.
Reading another forum just now and the complaints are pilling in about the Libre.
Sensors failing, totally inaccurate, slow response from the manufacture, and very painful insertion.
Personally I would hold on to your money until the firm has sorted out the mess.


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## Bloden (Nov 23, 2014)

Thank goodness I'm skint at the minute! I would've bought one, deffo.


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## HOBIE (Nov 23, 2014)

Sensor in tonight. Have to wait a bit for it to talk to reader. Did not feel a thing when applied. Looking good


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## HOBIE (Nov 23, 2014)

First Bg test with both New Libra & bg test strip 0.2 difference  Very impressed


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## trophywench (Nov 23, 2014)

In the Facebook group, there's nobody said it hurts.  In this or the other DSF, there's nobody said it hurts.

I don't look at any other forums.


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## HOBIE (Nov 23, 2014)

Northerner said:


> I'm hoping that the trial I will be involved in means they are heading in that direction  My consultant described it as the 'next step' in blood glucose monitoring. When you think about it, the consumables/sensors are £48 each and last 14 days. Hopefully, if they eliminate the need for some tests and help improve control then there will be savings to be made both in strips and interventions, plus the NHS would no doubt get a substantial discount on the price.
> 
> It's a no-brainer!



Keep voting Pls


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## HOBIE (Nov 25, 2014)

I have only had this device a day & a half & is double good !


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## AJLang (Nov 25, 2014)

Hobie you're right it's brilliant It has helped me to realise that I was going higher before midnight than I realised and last night I stayed within target all night - I wouldn't have known to tweak my basals without the Libre.  This morning it told me that my BG was going up so I knew to do a correction (obviously I double-checked with my BG machine which showed the same result).  I've just ordered another two sensors


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## AJLang (Nov 25, 2014)

trophywench said:


> In the Facebook group, there's nobody said it hurts.  In this or the other DSF, there's nobody said it hurts.
> 
> I don't look at any other forums.


I haven't felt either of the sensors go in


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## HOBIE (Nov 26, 2014)

It has open a new door with me ! At moment head is in melt down with info. I really like graphs etc. Have not had the thing long but brill  Well happy with Libra


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## trophywench (Nov 26, 2014)

There seem to be quite a few on the FB Group Alan, who could do with reading a forum like this or other DSF, it strikes me.

A few of the parents of children have been saying how the thing gives false results if Little Jonny lies on the cannula bit - it depresses the amount of interstitial fluid apparently and I wonder if it could be one of the reasons it isn't licensed for kids yet.  Apparently it's very important to remain well-hydrated throughout - I thought crikey! - I have to get up twice a night already without it!

We'll see.......


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## HOBIE (Nov 27, 2014)

I absolutely love it ! Its like a big weight off my shoulders.   Please PLEASE sign for it !  T2 are going to get some money spent on them (according to news). These can also be used for T2


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## HOBIE (Nov 27, 2014)

6529 now, Please keep voting  cos it is a good system ! Good for folks !


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## HOBIE (Nov 27, 2014)

These things are the future of testing MILES better


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## HOBIE (Nov 27, 2014)

There are a few people who know about these things but until you have a go of one you will not understand. I have been on the comp for the last couple of hours & watching my bg go down & down after my "T". I deff would not do that with test strips. It shows on a graph. I intend going out on Peddle bike this weekend & see how it does. Brill


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## trophywench (Nov 27, 2014)

Well some of us are champing at the bit Hobie, can't now get hold of one anywhere till after Xmas - and it doesn't help your rubbing that in, thanks ever so!


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## HOBIE (Nov 28, 2014)

I am trying to promote the Petition TW !  There are some folks who have not lifted a finger yet & this device is way ahead of other gadgets.  Good luck getting one cos I think they are great


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## trophywench (Nov 28, 2014)

Hobie

But if people are not interested in them, they are not interested.  You keeping banging on bout it won't change that unless there's something actually NEW to say and there isn't yet.

Plus although YES! I am interested - I am very doubtful as to whether it's any use doing it - they are DOING the clinical trials, which is what NICE/the NHS may listen to.  They will not be swayed one way or the other by a petition and if they are, they aren't doing it right because the only thing that matters is if it works CLINICALLY.


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## HOBIE (Nov 28, 2014)

HOBIE said:


> I am trying to promote the Petition TW !  There are some folks who have not lifted a finger yet & this device is way ahead of other gadgets.  Good luck getting one cos I think they are great



This devise may/may not be the best but it will make other manufacturers think how they can.  I love it


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## Shirl1946 (Nov 28, 2014)

signed.. every sig helps x


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## HOBIE (Nov 28, 2014)

Thank you Shirl !  It is a good toy !


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## HOBIE (Nov 29, 2014)

I went out last nt for a couple of beers & dragged Libra out of pocket passed over arm with my coat on & in seconds knew Bg. No sharp pins & no dropping test strips using 3 hands.  Is life changing gadget     Please Please keep voting  Had superb results for last 18hrs


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## HOBIE (Nov 29, 2014)

3400 views on this forum !   6000 on petition  Keep going please. If you have had a go at one of these you will know. So good


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## HOBIE (Nov 30, 2014)

Over 6600 have signed so far.  Please get family & friends involved  A real good gadget


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## HOBIE (Nov 30, 2014)

Would sort your problem out Jonty ! So so easy to test every 2mins if you want to.


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## HOBIE (Nov 30, 2014)

Qwertyfan can you use this page to talk about Libre


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## qwertyfan (Nov 30, 2014)

I've duly forwarded the petition to Facebook and family bods... I know we can talk about it in here, but perhaps a thread about the experiences might be of use (?) 
Think I'll take the plunge anyways.... making the move to carb counting and think this will be of huge benefit in the coming weeks and months.


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## HOBIE (Nov 30, 2014)

If we use this post to talk about it the more chance of getting more votes. Until the majority have tried it people will not know how good it is. Since I have been on computer tonight I have tested 8 times & watching the graph it makes.  Miles ahead & so easy to use


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## trophywench (Nov 30, 2014)

Well the Facebook Libre Users Group page is good for seeing what other folk are experiencing, though some of em don't appear to be quite as well-educated diabetically as 'us lot' !  LOL


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## HOBIE (Nov 30, 2014)

Please use this post to talk about Libre. Thank you


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## Pattidevans (Dec 1, 2014)

trophywench said:


> Well the Facebook Libre Users Group page is good for seeing what other folk are experiencing, though some of em don't appear to be quite as well-educated diabetically as 'us lot' !  LOL


There are some who know what they are talking about though Trophy.  There was a very interesting convo on lower carbing the other day.


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## HOBIE (Dec 1, 2014)

Keep them there votes coming in please  Its a magic gadget


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## stephknits (Dec 1, 2014)

Have added my name to the cause.


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## HOBIE (Dec 1, 2014)

Thank you Steph & any bod else who has signed. I promise it only takes a min to vote  Honest


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## HOBIE (Dec 3, 2014)

Was at my Docs today & showed the new device & they were impressed   Please keep voting


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## HOBIE (Dec 4, 2014)

6809 signs so far Please ask friends to sign


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## HOBIE (Dec 4, 2014)

Have you had a look at this Jonty. You can check every 2mins every day for 2 weeks if you need too


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## HOBIE (Dec 4, 2014)

HOBIE said:


> Have you had a look at this Jonty. You can check every 2mins every day for 2 weeks if you need too


 All the testing you will need Jonty


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## pav (Dec 4, 2014)

Been of the site for a few weeks, and first thing I see is this meter . While I am type 2 and regularly test can see this meter is of great benefit to anyone who has to test regularly.

Petition signed as well.


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## Northerner (Dec 4, 2014)

pav said:


> Been of the site for a few weeks, and first thing I see is this meter . While I am type 2 and regularly test can see this meter is of great benefit to anyone who has to test regularly.
> 
> Petition signed as well.



Nice to see you back pav, I hope you are well


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## pav (Dec 4, 2014)

Northerner said:


> Nice to see you back pav, I hope you are well



Unfortunately not, just been put in the high risk category for feet damage, the circulation and feeling is up the creek, now being put on monthly podiarist check up espec after suffering more blisters several pairs of shoes now binned.


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## HOBIE (Dec 4, 2014)

Well done for signing Pav !  I don't think people realise T2 & T1 can use this device. You can use it for weeks picture of where your Bg is.  Every 2mins or every min . No charge once you have the senser in place on your arm. Is very very good


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## pav (Dec 4, 2014)

Was wondering on ther cost of the sensors, compared to the strips I get through a month.


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## HOBIE (Dec 5, 2014)

Hi Pav. It would be cheaper for NHS so I have been told.  Test strips are very approx. £1 a go, The sensors are £60 - the vat & last for 2 weeks !  Keep them votes coming in cos is ex gadget


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## Northerner (Dec 5, 2014)

HOBIE said:


> Hi Pav. It would be cheaper for NHS so I have been told.  Test strips are very approx. £1 a go, The sensors are £60 - the vat & last for 2 weeks !  Keep them votes coming in cos is ex gadget



Test strips cost the NHS more like 30p each (box of 50 usually £15). You still need to test with the Libre, but not as often so it's not a complete replacement, but it does provide a lot of additional information that you couldn't get from strips alone


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## HOBIE (Dec 5, 2014)

I wonder what the NHS can get the sensors for ?


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## Northerner (Dec 5, 2014)

HOBIE said:


> I wonder what the NHS can get the sensors for ?



If they approve it, I am sure they'll negotiate a good discount!


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## HOBIE (Dec 6, 2014)

I hope they do  Its so so easy to use


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## HOBIE (Dec 7, 2014)

Was out on Peddle bike this morning & testing every few mins  A good toy


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## Northerner (Dec 7, 2014)

HOBIE said:


> Was out on Peddle bike this morning & testing every few mins  A good toy



Are the readings/graphs what you expected to see from past evidence of fingerpricks?


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## HOBIE (Dec 7, 2014)

I would not have done so many finger prick tests. So so user friendly & has put me on another playing field "Northy"   Please keep signing for it & passing about with friends & people who care


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## HOBIE (Dec 7, 2014)

I find the graphs very good, telling you if you are going down or up.It makes you realise how hard it is to run normal.  But I love it


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## pav (Dec 7, 2014)

I was thinking of buying the meter as it looks just the thing I need, as continually all over the place still. I know the price is high for a meter but would be worth it, though without getting the sensors on prescription there's no chance of me being able to constantly use it.


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## HOBIE (Dec 7, 2014)

Hi Pav the starter kit is vat free for Diabetics around £130 & for me its one of the best things I have ever had. I ordered 2 more sensors less than a week ago they came 2 days later. I was showing the Docs at the meeting I was at last week & they had heard about the Libre but not seen in action.  The starter kit comes with Reader & 2 sensors & one sensor lasts 2 weeks. Reader is like a very small mobile & fits in pocket easy.  If you car wanted 2 new tyres you would put them on.  Do your self a big favour


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## pav (Dec 7, 2014)

Think I will give them a ring about it, got another appointment with the DN in 5 weeks, lost count on the appointments I have had this year, but a constant visitor with her.

Sore point the car needs 2 new tyres as well in the very near future.


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## HOBIE (Dec 7, 2014)

Sorry I mentioned tyres  Famous last words


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## Northerner (Dec 7, 2014)

pav said:


> Think I will give them a ring about it, got another appointment with the DN in 5 weeks, lost count on the appointments I have had this year, but a constant visitor with her....



I don't think they are accepting new orders until January pav, as there has been such a great demand


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## pav (Dec 7, 2014)

Northerner said:


> I don't think they are accepting new orders until January pav, as there has been such a great demand



Could be good timing, as might get chance to discuss it with the DN before ordering, but can't see them agreeing to fund the sensors unless they see the loss of circulation in the feet as a mittigating circumstance.


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## Northerner (Dec 7, 2014)

pav said:


> Could be good timing, as might get chance to discuss it with the DN before ordering, but can't see them agreeing to fund the sensors unless they see the loss of circulation in the feet as a mittigating circumstance.



As they are not yet approved on prescription then I would think you've got no chance, so would have to self-fund initially, at least. I've been asked to participate in a trial, so hopefully that will go well and they will go ahead with prescribing them - might take a few months though! My consultant seemed very impressed by them, describing them as 'the next step'


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## HOBIE (Dec 7, 2014)

I heard that post & a couple of days later I thought I would order some more sensors for xmas.  Came no bother.  & I have only had the thing just over 2 weeks.  I have just been going through some of the functions & it tells you how many tests you have done. 17 per day for two weeks   Is brill


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## Northerner (Dec 7, 2014)

HOBIE said:


> I heard that post & a couple of days later I thought I would order some more sensors for xmas.  Came no bother.  & I have only had the thing just over 2 weeks.  I have just been going through some of the functions & it tells you how many tests you have done. 17 per day for two weeks   Is brill



I don't think it's a problem getting the sensors if you are already registered with them, it's actually registering.


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## HOBIE (Dec 7, 2014)

I know things change but I have only had the thing 2 weeks. I am not surprised there in demand. Please keep voting. I have had her in doors on getting her mates to vote


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## HOBIE (Dec 8, 2014)

Nearly 7000 posts  It takes mins to sign. Northy put site on first post.


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## HOBIE (Dec 8, 2014)

Why do you think there in Demand ? Cos there good ?


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## pav (Dec 8, 2014)

Just spoke to Abbott they expect the starter kit to be available mid Jan to new users as they have become very popular already.


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## HOBIE (Dec 8, 2014)

Good luck getting yours Pav.  Keep us informed


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## Lindarose (Dec 9, 2014)

Have a question about freestyle Libre and thought easier to ask on here than spend ages googling! I believe it can be used to test bg using fingerprick testing so presumably if you can't afford sensors continually it still has it's use. Does anyone know cost of the strips? Thanks


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## everydayupsanddowns (Dec 9, 2014)

They are the Freestyle strips Linda (Neo I think). The handset also takes the blood ketone strips. Both blood and ketone strips available on prescription.


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## Lindarose (Dec 9, 2014)

Thanks very much for quick reply. I would have to buy as am type 2 and 'no need to test' according to GP! But I'm still very interested in the Libre even though I don't think I actually need one. If I come into some money though.....


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## HOBIE (Dec 10, 2014)

Hi Linda, Can you imagine having a 2 week period of info ?  Mon morn high readings because of big sunday lunch & watching tv (not at work). Tues normal, wed nt went out for meal, High all day thurs. Fri high after lunch because half day.  So much info & you can buy one for £130 odd for a month of tests. Happy Times  A very good toy. Please keep voting & tell friends & family


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## Lindarose (Dec 10, 2014)

You know how to tempt a woman Hobie!


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## HOBIE (Dec 11, 2014)

Over 7000 now Please keep going. It is a fantastic gadget for learning how food affect the individual. We are all different


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## HOBIE (Dec 13, 2014)

Love the Graphs. It predicts the way you are heading - High or Low blood


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## HOBIE (Dec 14, 2014)

HOBIE said:


> Libra has arrived. Bang on time from friendly delivery driver   Ask me if I am chuffed.  Kid at Xmas.  Got some reading to do.    Pls keep voting & make some noise. Its cheaper for Nhs



Hope others get there's for the big day   I love the ease of testing now.  One less worry & for the better.


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## HOBIE (Dec 19, 2014)

There is no pins & needles with this device. I got mine a few weeks ago now. Paid full price & on my third set of sensors & think it is great. Very very little difference to blood testing (.2). I can watch if I have a biscuit how much it goes up


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## HOBIE (Dec 20, 2014)

7160 odd have signed so far.  Keep Going !


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## HOBIE (Dec 20, 2014)

A Good tool for learning what some foods do to you


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## HOBIE (Dec 21, 2014)

Best Xmas present yet "BY MILES"


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## trophywench (Dec 21, 2014)

You can't have it for Xmas - you know that !  (and you probably couldn't now anyway LOL)

We don't know yet when exactly in 2015 it WILL be available again and until then - most of us can't even try the damned thing - just a few lucky people like you !


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## HOBIE (Dec 21, 2014)

It shows how GOOD it is !


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## trophywench (Dec 21, 2014)

What does ?


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## HOBIE (Dec 21, 2014)

HOBIE said:


> It shows how GOOD it is !



If they were not good the demand would not be there  I KNOW they are good


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## HOBIE (Dec 22, 2014)

I have been to see Dsn today & got a Gold star !   Many days right on target


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## trophywench (Dec 22, 2014)

I HEAR they are good from lots of people, and of course, I want one myself to see if it helps - but it's purely anecdotal isn't it, until they do and complete the clinical trials and publish the results Hobie !


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## HOBIE (Dec 23, 2014)

I could be at about 7.2 & have a Digestive choc biscuit & watch it go up. I could not care about others tests. It is a good tool


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## trophywench (Dec 23, 2014)

Sounds from that Hobie that you don't care much about your own results either - eating a biscuit without bolusing when you are already over 7 !  

OTOH, it might actually be interesting to correct your 7.2 and see how quickly it came back down !


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## HOBIE (Dec 23, 2014)

May be I was going out to work TW. I don't just sit around you know. Why are you so negative Tw. The Freestyle is a Brilliant piece of kit.  As I sit at the computer I can judge what food does to the .0 .


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## trophywench (Dec 23, 2014)

Well Hobie = what are  you doing with that info? - cos that's the important thing isn't it, not what it itself can do!

I'm not actually being negative.

But the Libre is the same as an insulin pump - it doesn't solve any problems *unless the User puts the required work into using the thing and making it work*.  And yes I am shouting.

A good many people - and even some medical staff too - still seem to be living in Cloud Cuckoo Land and think that a pump or whatever is going to solve their problems on its own.

They don't.  You have to learn, by living with the item(s) how to get the info you need, to adjust diet, dosage, timing etc to improve your diabetes control, don't you?

ie YOU still have to do it - the gadget doesn't !

An important thing to remember on a public forum is that anyone can read what you say, they don't know you or your job or anything.  Like the effect on your BG of eating one biscuit.  10g CHO increases mine by 3.0 so that would make me 10.2.  So there you are eating biscuits when your BG is already at that level and so I (as a random reader) might think - well it must be OK for me to do it too, while I'm just sat here all day sitting on my bum and the most physical thing I did today was cook dinner.  It isn't !  (and when I worked it was in an office, so there's no comparison)

And I just worry by constantly saying Oh this is brilliant, that it might encourage people to think 'Ooh if I just get one of these then, all my troubles will be over!' - cos they won't be !

Back to the chocolate digestives ... I don't find ordinary digestives raise my BG mega quickly anyway, cos of the fat in them (and the fibre) I spose - but after half an hour, then I'll get a steep rise.  I found this out, cos I wondered by intensive use of my meter so the Libre way is less trouble indeed.  And a dark choc covering doesn't make much difference.  I spose milk choc might slow it down a bit cos of the extra fat - but I shan't test that since I wouldn't want to eat milk choc !


So anyway - what has finding out that piece of info done for you in terms of handling your D better ?

THOSE are the things I want to know from people, Hobie, before parting with my hard-earned spondulicks !


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## Northerner (Dec 23, 2014)

Personally, I'd like to know:

1. What's going on wit me overnight, when I have no basal and no bolus that might be 'covering' my basal needs.

2. What happens in the mornings, when I can take (a relatively huge) bolus insulin for my meagre breakfast up to an hour before eating and not go low.

3. What happens when I go out for a run - why do my levels remain unchanged for 5 miles - or do they?

4. How good is the timing of my bolus injections, and could I improve it? Does it really vary that much depending on what I eat?

5. What happens when I drink beer?

6. What's going on when I have a hypo 9 hours after last injecting?

I'm sure there are lots of other things I would discover!


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## trophywench (Dec 24, 2014)

Your pancreas is Kooky's Patty's twin sister?  LOL

Well yes Northerner, and of course you don't know what you'll do with that info, until you get it and see what it is.

But the important bit will be - what you actually do with the info, won't it?

I mean - I also would like one, for 1. - even though I do need overnight basal.  It's an absolute PITA doing overnight basal testing - whether you are on a pump or MDI.

I mean quite  a lot of people on FB have mentioned it's shown them it's better to bolus more time upfront for certain mealtimes/food - so that's great.

I don't want to use it all the time by any means - just think it would be useful for the things I've already mentioned a few times a year, and also be available immediately should I ever be ill. 

Plus whatever else I happen to find out about 'me' along the way.


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## Northerner (Dec 24, 2014)

trophywench said:


> Your pancreas is Kooky's Patty's twin sister?  LOL...



I suspect my pancreas and Kooky's are involved in some sort of quantum entanglement


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## AJLang (Dec 24, 2014)

OK I know that I'm more complicated because of the gastroparesis but, amongst other things, the Libre has taught me that although my BGs vary a lot from night to night that there are some general themes
a) that I needed to increase slightly my 10pm, 11pm and midnight basals
b) that usually 2 units of immediate Humalog with my dinner plus a six hour multiwave plus an extra boost of basal at 3am, 4am and 5am works best ie most days it matches the food pattern of my gastroparesis although it occasionally goes to a 6am hypo but it works more often than it doesn't
d) that sometimes when I wake my BG goes up - unless I tested every 30 minutes I wouldn't know this but as I scan with the Libre if there is a trend of increasing BGs then I can cross check with a finger prick test and correct as necessary
e) Ditto some mornings I drop when I wake up and the Libre pickes this up.
f) when I feel shaky during the night I can quickly scan to see it's possibly a hypo - if the Libre says that it is 5.5 or above then I can go back to sleep
These are just some examples


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## HOBIE (Dec 24, 2014)

Have you finished TW ?  I am promoting this device because I really like it ! Keep your money in your pocket TW & work in the dark ages. I have been at this game more than ten years longer than you & seen a lot of changes this being one of the better ones ! I work FULL time & have NEVER been on the dole in my life. I don't live in London were there are LOTS of jobs. Remember this is a post for a petition   Please keep voting !


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## heasandford (Dec 24, 2014)

I think it's also about access to the evidence - clearly the restriction of test strips is about saying that even when given the evidence a significant number of people don't use it/want it, which is a complete mystery to me!
I am surprised to find how different my results are, I always thought they varied a lot and there were no patterns but now I have proof! I just feel so much more confident having the Libre results in front of my eyes and hope that there will be some long term improvement.


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## Northerner (Dec 24, 2014)

Knowledge is power!


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## Flutterby (Dec 24, 2014)

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.


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## HOBIE (Dec 24, 2014)

Even more Gold stars to hand out  You can set alarms on it if you need to know to test at a set time. Hope peeps get them in there stocking to mo


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## Bessiemay (Dec 24, 2014)

HOBIE said:


> Even more Gold stars to hand out  You can set alarms on it if you need to know to test at a set time. Hope peeps get them in there stocking to mo


That would be a lovely stocking filler.


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## HOBIE (Dec 26, 2014)

I made it a Xmas presey for myself. A good one. Pls keep voting


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## HOBIE (Dec 28, 2014)

Well done Flutterby. Gold star for you !  I had a sensor in & had great results over Xmas. Back to pins in fingers for a week or so  Hope everyone who ordered get them soon. Please get people to vote


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## DeusXM (Dec 29, 2014)

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.


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## HOBIE (Dec 29, 2014)

So if every Diabetic in the country signed it would not help ?  I know how good the Libre is. If there was 50,000 people signed I also know it would help the cause  Please KEEP voting


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## HOBIE (Dec 29, 2014)

Also if there was LOTS of SUPPORT I would be the first knocking on parliaments door


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## DeusXM (Dec 29, 2014)

HOBIE said:


> So if every Diabetic in the country signed it would not help ?  I know how good the Libre is. If there was 50,000 people signed I also know it would help the cause  Please KEEP voting



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?'


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## Redkite (Dec 29, 2014)

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!


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## everydayupsanddowns (Dec 29, 2014)

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


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## Redkite (Dec 29, 2014)

everydayupsanddowns said:


> 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



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?


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## AJLang (Dec 29, 2014)

Hi Redkite I'm on my forth sensor and haven't had any problems with the sensor. Plus the information it has given me has helped me lots in bringing down my average BG - not easy with gastroparesis


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## Redkite (Dec 29, 2014)

AJLang said:


> Hi Redkite I'm on my sixth sensor and haven't had any problems with the sensor. Plus the information it has given me has helped me lots in bringing down my average BG - not easy with gastroparesis



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!


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## HOBIE (Dec 30, 2014)

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


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## HelenM (Dec 30, 2014)

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/


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## AJLang (Dec 30, 2014)

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.


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## Redkite (Dec 30, 2014)

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!


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## HOBIE (Jan 3, 2015)

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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## AJLang (Jan 3, 2015)

Please see the message that I have posted about Libre problem.


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## HOBIE (Jan 3, 2015)

I posted a while ago Being 0.2/3 different to my meter. It works fine for me  Sorry you have had probs. I love being more confident about where I am


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## AJLang (Jan 3, 2015)

Thank you Hobie.  I'm so pleased for you that it is working so well.


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## AJLang (Jan 3, 2015)

The new sensor is working 5.1 on the sensor and 6.4 on the meter.  As it usually takes 24 hours for the sensor to settle in I'm happy with that


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## HOBIE (Jan 13, 2015)

Good news Amanda  Just love the info of it


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## HOBIE (Jan 28, 2015)

9,712 now !   Its a good toy


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## heasandford (Jan 29, 2015)

AJLang said:


> The new sensor is working 5.1 on the sensor and 6.4 on the meter.  As it usually takes 24 hours for the sensor to settle in I'm happy with that



I have found that if I put on the new sensor 24 hours before the old one runs out it seems to 'bed in' much quicker - have you tried that?

I really love mine for the trends, but agree that I don't really want to use it for dosing accurately. My blood sugar moves at such speed sometimes that the Libre is frequently behind my BG. I thought the accuracy was very similar to most of the CGMs on the market though? 

I have used it constantly since the beginning of November without any problems - 6th sensor. As long as I can pay for it I shall continue with it!


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## HOBIE (Jan 29, 2015)

If people can get £400 for packing in smoking "What is going On ?" . I know in the long run its cheaper to get people off smoking but no wonder the NHS is under pressure


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## Highlander (Jan 29, 2015)

I've just signed.


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## HOBIE (Jan 29, 2015)

Thank you Highlander !


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## HOBIE (Feb 18, 2015)

Its 9.968 sigs now   I will write to my MP when its over 10,000  & this is the 250th post on this site


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## HOBIE (Feb 18, 2015)

30 to go !   Its a lot of good people


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## HOBIE (Mar 22, 2015)

10.500 & odd now. Keep voting pls


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## HOBIE (Mar 22, 2015)

Please use this post to talk about Libra. Might get some more people voting  Thank you


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## HOBIE (Mar 22, 2015)

10,600 odd just off tonight for a short time  100 more


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## HOBIE (Mar 25, 2015)

This is the one to talk about "Libre" on please


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## HOBIE (Mar 29, 2015)

10,725 when I looked   That's worth putting in the paper ?  Its a good gadget & takes a weight off your mind


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## HOBIE (Apr 5, 2015)

11,500 plus  see if them there papers do anything ?


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