Petition for CGMs on the NHS

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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.
 
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.
 
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. 🙂
 
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
 
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.
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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 😉)
 
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.
 
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.
 
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!
 
Signed. I'm going to have another 'discussion' about a CGM with my consultant on Tuesday.
 
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.
 
pottersusan said:
Signed. I'm going to have another 'discussion' about a CGM with my consultant on Tuesday.
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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
 
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!
Click to expand...

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
 
Signed
 
over 10,000 signatures now, so the government have to respond!
 
pottersusan said:
over 10,000 signatures now, so the government have to respond!
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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?
 
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.
 
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.
 
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.
 
pottersusan said:
Please remember we are all different.
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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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