# Petition for CGMs on the NHS



## Empire Line (Feb 6, 2016)

Sign the Petition for Continuous Glucose Monitors to be provided on the NHS!

https://petition.parliament.uk/petitions/107435

I have Type 1 Diabetes and self-fund a Continuous Glucose Monitor - it has eliminated my hypos and I regularly have 'gold standard' HBA1C readings (between 42 and 52mmol). 
*
These things work* and they will help to save the NHS money as patients experience fewer problems. *Its a WIN WIN situation for the patient and the NHS!  *

Please forward the petition to others.
*THANK YOU.*


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## Matt Cycle (Feb 6, 2016)

I've signed it although I'm sure there was another one a few months ago?

Is it for pure CGM's or are you including the Libre?  As I don't think in a million years, despite the NHS savings etc etc pure CGM's will ever be provided to all on the NHS unless there is a massive reduction in cost.


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## Northerner (Feb 6, 2016)

I'm fully supportive of all who can make good use of CGMs getting them, but I think that the point made after the last petition (which I think may have been for the Libre to be made available on the NHS) was an important one i.e. that it is not the government but NICE who decide whether such items represent money well spent and should therefore be funded. There are currently some special circumstances where CGMs are funded on the NHS, but criteria are very tight.

As I understand it, the Libre has been undergoing trials since its introduction, so maybe it won't be too far off being approved.


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## Empire Line (Feb 6, 2016)

Hi,

Yes I'm hearing that there have been many petitions already. Clearly then this something that diabetics continue to want.

There are two crucial points that need to be discussed more readily - one is cost: the CGM is comparable to the pump, the costs are VERY similar, and the second is that the Libre (only slightly cheaper than the CGM) doesn't alarm patients. The alarm is beeping and buzzing when blood glucose goes too high or too low, and you can see it on the graph on the screen.

As someone who uses a CGM I can tell you that it's the alarm system which is the main feature - it means I don't have hypos, whilst still maintaining tight glucose control.  The Libra won't tell a patient when they're about to have a problem, it will tell them later when - lets face it - the patient will most likely know that they've had a hypo!!

Never mind the Libra, lets get talking about proper CGMs - they've been out there for years, they're really accurate now and they transform the life of people with Type 1 because of the alarm system.

Spread the word!  This isn't my petition, I don't know who set it up, but I can confirm what they're saying - my CGM has eradicated my hypo's and they should be made available to all people with insulin dependent diabetes. 

Thanks for your support!!
EL x


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## Empire Line (Feb 6, 2016)

Matt Cycle said:


> I've signed it although I'm sure there was another one a few months ago?
> 
> Is it for pure CGM's or are you including the Libre?  As I don't think in a million years, despite the NHS savings etc etc pure CGM's will ever be provided to all on the NHS unless there is a massive reduction in cost.



Thanks for signing!!  It's for pure CGMs - mine is the Dexcom G4 and I absolutely wouldn't be without it (not until the day I'm cured anyway )


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## Lauren (Feb 6, 2016)

I've signed and shared


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## Lorraine hunt (Feb 6, 2016)

I have signed it, and would love to have CGM, have self funded the libra as a trouble shooting tool, however the last 24 hours am not impressed by it so far, readings are way off, am giving the benefit of the doubt as advised to allow to settle 24/36 hours  but would love to have CGM but I fear we are a long way off getting any finding for it.


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## TheClockworkDodo (Feb 6, 2016)

I have signed and passed on.  Not sure I want something to beep at me (I have another illness which makes me sensitive to noise, so I tend to turn off the beeper of anything which beeps!) but I really, really want to know what my bgls are doing overnight as I almost invariably sleep through and can't check.  And knowing when I'm spiking or plummeting during the day would be very handy too.


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## Shoshana (Feb 7, 2016)

Hi I've signed the petition. I'm a parent of recently diagnosed T1 child. We are in constant hypo or hyper mode and I cannot check her at night as she becomes a crazed beast when woken and nearly passes out from screaming at me and throwing everything in sight. So far so good, from not waking her in the night, as her fasting blood glucose is pretty constant having found the right glargine dose, but I really feel uncomfortable not having a CMS as her hypo awareness is unreliable at best and sometimes she is totally unaware. Good luck with the petition!


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## pottersusan (Feb 7, 2016)

Signed. I'm going to have another 'discussion'  about a CGM with my consultant on Tuesday.


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## pav (Feb 8, 2016)

Signed it as well, espec after using the libre for a few days can see why they are such a useful aid in diabetic care.


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## Empire Line (Feb 8, 2016)

pottersusan said:


> Signed. I'm going to have another 'discussion'  about a CGM with my consultant on Tuesday.



Hi - thanks for signing!  The CGM costs approx the same as the insulin pump - so there's no good reason why they don't provide one...   If you can post the petition on facebook, twitter, send to your colleagues, friends and family we can hopefully get the 100, 000 signatures needed for a discussion about this in the commons. When you add the life saving benefits of better glucose control, the CGM actually saves the NHS money.  For people forced to use insulin, it's just cruel not to provide this care.
Spread the word!!  Good luck with your consultant - the more we can get people talking about this the better. Best wishes, EL x


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## Empire Line (Feb 8, 2016)

Shoshana said:


> Hi I've signed the petition. I'm a parent of recently diagnosed T1 child. We are in constant hypo or hyper mode and I cannot check her at night as she becomes a crazed beast when woken and nearly passes out from screaming at me and throwing everything in sight. So far so good, from not waking her in the night, as her fasting blood glucose is pretty constant having found the right glargine dose, but I really feel uncomfortable not having a CMS as her hypo awareness is unreliable at best and sometimes she is totally unaware. Good luck with the petition!



Hi - thanks for signing!!  Sounds like you're having quite a time at the moment..  

I've had my CGM (Dexcom G4) for 2 years and the first thing that went through my mind was - why on earth aren't these given to children?? It transforms the experience of having diabetes from chronic and awful, to completely manageable and okay.  For parents of children with T1 who never get a night's sleep this would change their lives too.  It's technology that's been available for years, it's very reliable, it costs approximately the same as the insulin pump, and it leads to better glucose control and quality of life.  There is no sensible reason why NHS is not getting on board and providing this to their patients.

I urge to you to post this petition on Facebook, Twitter, etc, and email it to your colleagues, friends, family and other people you may know with Type 1. We need 100,000 signatures for this to be debated in the commons - so 90,000 still to go!  

Meanwhile if you can afford it - get the CGM. The company who supply it in the UK is Advanced Therapeutics, look them up, give them a call. 

All the best to you and your daughter Xx


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## Riri (Feb 8, 2016)

Signed


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## pottersusan (Feb 11, 2016)

over 10,000 signatures now, so the government have to respond!


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## trophywench (Feb 11, 2016)

pottersusan said:


> over 10,000 signatures now, so the government have to respond!



Presumably by saying Fat Chance - we've almost managed to close the NHS today so you won't stop us.

OTOH, if they want to make sure they bleed the coffers completely dry before closing the door - why not?


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## Austin Mini (Feb 11, 2016)

At £1,335.00 for the Dexcom starter kit I dont think the NHS are going to be able to afford that. Whats wrong with the finger pricker testing? Thats not cheap either but free cgm on the NHS I cant see that happening, sorry.


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## Matt Cycle (Feb 11, 2016)

The Libre is a much more viable proposition to the NHS.  Sensors around £48 for 14 days i.e. £24 a week.  Readers are about £48 and last 3 years.  If you test 7 times a day with an average cost of strips say £20 then that's only £4 less than a libre per week.  If you test 10 times a day then the Libre works out £4 cheaper per week.  If the cost of your strips is £25 or £30 then the savings are even greater.  I'm sure the NHS could do a deal to get the sensors cheaper anyway.  Yes, you will need some strips as well but there's not a right lot in it.

There should be no arguments about over testing/restrictions (for T1's) as the sensor lasts 14 days and you can test all you want.
I suspect if/when they approve it for prescription it'll be like it is now.  T1's will probably get it and everyone else will have to take pot luck.


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## pottersusan (Feb 11, 2016)

I cant see it becoming available generally, but there are people like me who need one. Reducing my hba1c from 68 to 54 in two months was only possible with a cgm and being able to see what's happening and  being warned of problems coming in time to deal with them so in fact they are not problems.

Prior to the cgm I was finger pricking every hour and sometimes more often. My fingers are vital to my livelihood.

Please remember we are all different.

It's about raising awareness.


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## TheClockworkDodo (Feb 11, 2016)

pottersusan said:


> Please remember we are all different.



Yes, I think that's important.  Some people might manage their bgls with just testing, but some of us are really struggling, not because we don't try but because of other factors such as other illnesses.

I sleep for nine hours at night and don't usually wake up at all.  If I do wake up I can't sit up.  I just have to stay in bed until my blood pressure and/or adrenalin levels catch up with the fact that I'm awake and I can sit up, or roll out of bed onto the floor (that is, if my bp is high enough that I can turn myself over).  So, short of getting my partner (who works full time and already struggles to get anything like enough sleep) to set himself an alarm so he can get up every night and test me, I have no way of knowing what my bgls do all night.  And as I quite often have 2 or 3 hypos in a day, because I'm not only sensitive to insulin but also to a range of things over which I have no control, like the weather, I'd really really like to know what my bgls do overnight.


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## trophywench (Feb 12, 2016)

Well of course having a Libre doesn't replace fingerprick testing, neither does having a CGM.  Both of those will always be 10 or so minutes behind blood testing because that's the time lag between blood and interstitial fluid and anyway you have to test every 4 hours or so to ensure the CGM is correctly in line (can't remember the correct word there) with your BG.

And so it's never 'instead of' - always 'as well as'.


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## Robin (Feb 12, 2016)

trophywench said:


> Well of course having a Libre doesn't replace fingerprick testing, neither does having a CGM.  Both of those will always be 10 or so minutes behind blood testing because that's the time lag between blood and interstitial fluid and anyway you have to test every 4 hours or so to ensure the CGM is correctly in line (can't remember the correct word there) with your BG.
> 
> And so it's never 'instead of' - always 'as well as'.


It doesn't replace it entirely, but I find that once I've done a few parallel tests over the first 48 hours, if my Libre and meter are agreeing, I rein back on the test strips and save them for when I haven't got a Libre sensor in, unless I'm driving of course.


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## pottersusan (Feb 12, 2016)

trophywench said:


> Well of course having a Libre doesn't replace fingerprick testing, neither does having a CGM.  Both of those will always be 10 or so minutes behind blood testing because that's the time lag between blood and interstitial fluid and anyway you have to test every 4 hours or so to ensure the CGM is correctly in line (can't remember the correct word there) with your BG.
> 
> And so it's never 'instead of' - always 'as well as'.


the word is 'calibrate'! and you have to do it at least twice daily with the Dexcom.
I've just restarted the current sensor for the third time - hip hooray! It surprises me how when you have to do two finger pricks within minutes of each other (for the initial calibration) the variation in BG between neighbouring fingers.


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## trophywench (Feb 13, 2016)

I'd completely lost 'calibrate' for the minute there Susan!  Dunno where it went .......

Ta!

My meaning was though, that the NHS couldn't possibly save ALL what it pays out for strips - even if they give us ALL a CGM even a reasonably priced on like the Libre.

For starters they use shedloads themselves - whenever anyone at all - diabetic or non-D happens to go for a pre-med, before an operation for starters.  Anyone presenting at A&E and triaged gets their BG tested automatically and their BP when they ask you things like your name address and basically what's your prob.  And of course - anyone on a stretcher it's also automatic.


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## Robin (Feb 13, 2016)

trophywench said:


> I'd completely lost 'calibrate' for the minute there Susan!  Dunno where it went .......
> 
> Ta!
> 
> ...


A & E always seemed to adopt the latest cutting edge equipment, ( whether it's different now they're all strapped for cash, I don't know) , like thermometers you stick in the ear for an instant readout, and clothes peg BP devices that stick on the end of your finger. I wonder if eventually, when it's developed, they'll all use the gizmo I read about somewhere on here, that reads your BG by radio waves or something, without needing to stick anything in your finger.


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## Northerner (Feb 13, 2016)

Robin said:


> A & E always seemed to adopt the latest cutting edge equipment, ( whether it's different now they're all strapped for cash, I don't know) , like thermometers you stick in the ear for an instant readout, and clothes peg BP devices that stick on the end of your finger. I wonder if eventually, when it's developed, they'll all use the gizmo I read about somewhere on here, that reads your BG by radio waves or something, without needing to stick anything in your finger.


I thought those clothes peg things were pulse oximeters, to measure pulse and blood oxygen levels?


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## Robin (Feb 13, 2016)

Northerner said:


> I thought those clothes peg things were pulse oximeters, to measure pulse and blood oxygen levels?


Oh probably, I was strapped down to a board in the back of an ambulance at the time, hard to see what's going on. ( There was no way I thought I'd broken my neck, but apparently they'd recently missed one, so anyone complaining of the least bit of stiffness in a car crash was automatically carted off). I remember asking what my BP was, after the paramedic mentioned they'd taken it, and he said, 'if I tell you will you promise not to panic!' I thought he said the clothes peg thingy did it, but I'm probably wrong.


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## Northerner (Feb 13, 2016)

Robin said:


> Oh probably, I was strapped down to a board in the back of an ambulance at the time, hard to see what's going on. ( There was no way I thought I'd broken my neck, but apparently they'd recently missed one, so anyone complaining of the least bit of stiffness in a car crash was automatically carted off). I remember asking what my BP was, after the paramedic mentioned they'd taken it, and he said, 'if I tell you will you promise not to panic!' I thought he said the clothes peg thingy did it, but I'm probably wrong.


Ah! My introduction to it was under much calmer circumstances (sort of!) when I was put in the cardiac care unit after my diagnosis - they immediately hooked me up to all sorts of gizmos there, with a semi-permanent ECG as well  I annoyed the nurses by constantly asking them questions about everything!


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## robert@fm (Feb 13, 2016)

As a sufferer of obstructive sleep apnoea,  I often have my SpO2 (blood oxygen saturation) measured, and can confirm that it's the LED clothes peg which does that (along with pulse). These tests are often done at the same time as BP (inflatable cuff), hence the confusion.


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## trophywench (Feb 13, 2016)

It is blood oxygen levels Alan - we kept saying to the A&E staff that Pete's was a bit low wasn't it since it was 80-something percent and a recent TV prog had told us anything under 90 was a danger sign - but they assured us that it was fine.

Two days later at a different hospital A&E they put the first hosps X-rays up and enquired immediately what they'd said about Pete's chest - he said they'd said nothing - but his side hurt, and he'd been complaining about that as well as his leg and shoulder, ever since the accident.

5 broken ribs and a collapsed lung were the reason!  They had to put a chest drain in - the sort they have to do without an anaesthetic - Owwww!


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