# Any funding available for CGMs at all?



## Smiric (Feb 12, 2017)

Hey guys & gals,

I've recently bought myself a Freestyle Libre & the first sensor is approaching it's "expiry date" (I'm pretty sure it'd last longer, but it looks like the software will disable it regardless, which is more money for the company so I'm sure the CEO will be happy) ..anyway, I've got 1 sensor left, which'll last for 2 weeks, and if I have to continue buying them throughout the year it'll cost £1200 assuming they all work perfectly fine for their 2 week duration. Is there any funding at all available? I saw a post on a different diabetes forum saying you could forfeit your free testing strips and instead be given a (roughly) £1k annual stipend to spend on whatever means of testing you wish - which would probably cost me about £300-400 a year... but that post was from 2014 I believe (can't find it now, unfortunately) and I'm not sure whether this option is still available.

Anyone with any information that regards this, I shall cool with giant leaves and feed juicy purple grapes to!

Thanks!

=)


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## Pumper_Sue (Feb 12, 2017)

Smiric said:


> I saw a post on a different diabetes forum saying you could forfeit your free testing strips and instead be given a (roughly) £1k annual stipend to spend on whatever means of testing you wish - which would probably cost me about £300-400 a year... but that post was from 2014 I believe (can't find it now, unfortunately) and I'm not sure whether this option is still available.


It was never available and nope there is no funding for libre sensors or CGM's either. There are a few cases where as funding has been granted due to hypo unawareness but that's all.


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## Smiric (Feb 12, 2017)

Oh fantastic. Guess I'll just have to pay through the nose for relatively normal blood sugars for now then. Who do I contact to speed the process of the NHS changing from strips to CGM?


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## Ginny03 (Feb 12, 2017)

Smiric said:


> Is there any funding at all available? I saw a post on a different diabetes forum saying you could forfeit your free testing strips and instead be given a (roughly) £1k annual stipend to spend on whatever means of testing you wish


I haven't heard of that one, but it seems unlikely they'd let us do this as I don't think they've approved the accuracy of Libre and you'd still need strips for driving and to cross check the CGM. Personally I think they're missing a trick as the thing is an absolute godsend. I look at it as £100 a month rather than on a yearly basis - that makes me feel less nauseous!


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## Smiric (Feb 12, 2017)

I'll have a gander for it, cause I definitely read it somewhere. Was by a mod of another forum, who was testing the cost of a CGM  if I remember correctly. Yeah I'm afraid £100 a month still activates my gag reflex. Try and be good with money & then have to pay 3 digits a month just to live a semi-healthy life! Not best pleased!


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## mikeyB (Feb 12, 2017)

It only hurts because it's a one off payment. If you add up the money you spend regularly on drinks, and maybe fags or vapes, and takeaways, you'd be surprised by how good value the Libre is, though you may have to give up an indulgence or two to continue. I couldn't live without it, to be honest.


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## Smiric (Feb 12, 2017)

Eh? It's £100 a month, not a one-off payment? I don't spend any money on fags, vapes or takeaways. Have maybe 2 bottles of red a month now (used to binge drink a lot so trying to cut down). The Libre is awesome, don't get me wrong - it's just annoying (very) that I can't switch over the money that they'll give me for testing strips onto the CGM with a few strips for checking in certain situations - which would actually work out cheaper for the NHS considering the amount of strips I was using to try and maintain good sugar control.


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## Rosiecarmel (Feb 12, 2017)

I've not heard at all of this swapping test strips for a CGM. The Libre isn't approved my NHS so there's no way they'd let you do that anyway. The other CGMs such as Dexcom etc are v expensive and are only given on the NHS in exceptional circumstances. 

I know it sucks. I wish I could get the Libre on the NHS but it's just not possible (yet)


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## Smiric (Feb 12, 2017)

Even if I prove that my control is better on the CGM they wouldn't?

Edit: And that it would save them (and me) money?


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## Rosiecarmel (Feb 12, 2017)

This website might help; http://www.inputdiabetes.org.uk/cgm/cgm-nhs-funding/

Short term loaning of a CGM is possible on the NHS but there's very strict criteria to meet to get one long term.

As far as I'm aware you have to prove you're "clinically different" from any other type 1 to get long term access to a CGM


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## Smiric (Feb 12, 2017)

Yeah I don't meet the criteria - apparently my control is "good enough"... Says the doc without diabetes wrecking his body every time his sugars are out of range. Easy for him to sit back and tell me that.


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## Rosiecarmel (Feb 12, 2017)

I know it's hard when you feel like you're not being supported by your health care team. Have you ever considered a pump? I know many people on this forum have significantly improved their blood sugar control on a pump.


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## Smiric (Feb 12, 2017)

I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption. Haven't done my own research on the matter as of yet though. I don't mind doing MDIs though - they're a minor inconvenience. It's just the constant thought process/calculations that bug me - something that a CGM helps a lot with as it happens =P


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## Rosiecarmel (Feb 12, 2017)

If you're interested, maybe have a look on the pump section of this forum. Somebody there may be able to help better answer questions re insulin absorption and scar tissue.

Hopefully soon, more companies will start to develop technology similar to the Libre and the price will come down. The technology is so new which is why it's so expensive.


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## Smiric (Feb 12, 2017)

Shall do, thanks. Yeah hopefully - not getting my hopes up though, as things always take a lot longer than I expect =P. Do you know who/where I can get in touch with people to speed the NHS along?


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## SB2015 (Feb 12, 2017)

Hi Smiric, there is no funding for Libre at present, and it is very difficult to get funding for CGM.  Even with those there is still the need to finger test, so strips would be needed.

I use the Libre and find it helps me to head off a hypo or hyper I can see the direction of travel my BG is giong oats well as the reading (even if it is about 15 min behind my actual BG).  As it is so much easier to use that finger prick I tend to check more often with just a swipe, and only test 
- if I am about to drive ( requirement of DVLA who do not yet accept Libre)
- about to eat
- may be hypo

The sensors do indeed last exactly 14 days and are programmed to cut out exactly 14 days after being activated.  I have had a couple of problem sensors but they have always been replaced by Abbott.  I tend to put my next sensor in 48 hours before I want to activate it as I found the readings were a bit wobbly for the first couple of days (not due to BGs) and quite different from BG.  I also try to keep well hydrated when using a Libre as this seems to improve the accuracy as well ( and it is a good plan anyway for health).

I hope that makes sense and helps


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## grovesy (Feb 12, 2017)

Smiric said:


> I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption. Haven't done my own research on the matter as of yet though. I don't mind doing MDIs though - they're a minor inconvenience. It's just the constant thought process/calculations that bug me - something that a CGM helps a lot with as it happens =P


My understanding is you get pockets of tissue where absorption of Insulin is patchy by injections too.


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## SB2015 (Feb 12, 2017)

Smiric said:


> I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption. Haven't done my own research on the matter as of yet though. I don't mind doing MDIs though - they're a minor inconvenience. It's just the constant thought process/calculations that bug me - something that a CGM helps a lot with as it happens =P



That is a new one on me.
I  have far fewer sore spots since switching from injections to the pump.  I used to have bruises all over the place when injecting 4/5 times a day.  I now put in one cannula every two days most of the time.  I have the odd one that goes a bit skanky and just put in a new cannula earlier.  By tracking across my abdomen I can make sure that I don't revisit a site for ages.  So far so good.


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## Pumper_Sue (Feb 12, 2017)

Rosiecarmel said:


> As far as I'm aware you have to prove you're "clinically different" from any other type 1 to get long term access to a CGM


I tried that due to my Addison's disease and was told by the Pollock at the ccg that loads of diabetics took steroids so I was no different to anyone else and it wasn't fair to give me funding as no one else had it. I was very good and didn't point out that it wasn't fair I had Addison's as well as diabetes.


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## Smiric (Feb 12, 2017)

grovesy said:


> My understanding is you get pockets of tissue where absorption of Insulin is patchy by injections too.


Oh, absolutely. I've never had this problem myself though as I rotate my sites all the time.


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## Smiric (Feb 12, 2017)

SB2015 said:


> That is a new one on me.
> I  have far fewer sore spots since switching from injections to the pump.  I used to have bruises all over the place when injecting 4/5 times a day.  I now put in one cannula every two days most of the time.  I have the odd one that goes a bit skanky and just put in a new cannula earlier.  By tracking across my abdomen I can make sure that I don't revisit a site for ages.  So far so good.


Fair enough, I'm glad it works for you =) - shall have a look into it myself, but I don't mind the MDIs atm to be honest.


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## Pumper_Sue (Feb 12, 2017)

Smiric said:


> I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption.


Birdbrain has never approved pumps mainly because he doesn't understand them. It has nothing to do with scar tissue, I've had a pump for many years and no sign of scar tissue at all.


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## Smiric (Feb 12, 2017)

SB2015 said:


> Hi Smiric, there is no funding for Libre at present, and it is very difficult to get funding for CGM.  Even with those there is still the need to finger test, so strips would be needed.
> 
> I use the Libre and find it helps me to head off a hypo or hyper I can see the direction of travel my BG is giong oats well as the reading (even if it is about 15 min behind my actual BG).  As it is so much easier to use that finger prick I tend to check more often with just a swipe, and only test
> - if I am about to drive ( requirement of DVLA who do not yet accept Libre)
> ...


I don't really drive very often (trying to be good to the environment =P) - but yeah, I'd test then.. and I test occasionally for hypos - don't bother with a finger prick test before meals though - the CGM has always been +/-1mmol, which isn't perfect, but it'll do.


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## Smiric (Feb 12, 2017)

Pumper_Sue said:


> I tried that due to my Addison's disease and was told by the Pollock at the ccg that loads of diabetics took steroids so I was no different to anyone else and it wasn't fair to give me funding as no one else had it. I was very good and didn't point out that it wasn't fair I had Addison's as well as diabetes.


Don't know whether that was good or not- should have fought the point & tried to get your hands on one. The system is a pile of crap that needs to change (a certain system of a down song comes to mind)


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## Smiric (Feb 12, 2017)

Pumper_Sue said:


> Birdbrain has never approved pumps mainly because he doesn't understand them. It has nothing to do with scar tissue, I've had a pump for many years and no sign of scar tissue at all.


I take it you're not a fan of him? Any particular reason why not?


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## Pumper_Sue (Feb 12, 2017)

Smiric said:


> Don't know whether that was good or not- should have fought the point & tried to get your hands on one. The system is a pile of crap that needs to change (a certain system of a down song comes to mind)


I have CGM and have had for about 2 years or more. I did some research and a charity kindly funds it for me


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## grovesy (Feb 12, 2017)

Smiric said:


> Don't know whether that was good or not- should have fought the point & tried to get your hands on one. The system is a pile of crap that needs to change (a certain system of a down song comes to mind)


We have people on here who have no pancreas through surgery and are not considered special enough for funding and they have fought to get one even got their MP on board, without getting one.


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## Smiric (Feb 12, 2017)

Pumper_Sue said:


> I have CGM and have had for about 2 years or more. I did some research and a charity kindly funds it for me


Jolly good =)


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## Smiric (Feb 12, 2017)

grovesy said:


> We have people on here who have no pancreas through surgery and are not considered special enough for funding and they have fought to get one even got their MP on board, without getting one.


That's ridiculous.


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## SB2015 (Feb 12, 2017)

You mention about the hassle of doing calculations, do you have a handset that will do the calculations taking account of active insulin, BG and the carbs you are about to eat.  That is what all the handsets I have had works, but it does involve diong a BG test before a meal.


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## Smiric (Feb 12, 2017)

SB2015 said:


> You mention about the hassle of doing calculations, do you have a handset that will do the calculations taking account of active insulin, BG and the carbs you are about to eat.  That is what all the handsets I have had works, but it does involve diong a BG test before a meal.


No I don't, that sounds awesome. Where would I acquire one of those? I'm gonna be completely honest and say I'd probably still use the CGMs reading pre-meal. Only double check when I'm low/before driving and occasionally if I think I haven't done one for a while.


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## SB2015 (Feb 12, 2017)

I used an Accu Chek Aviva Expert until I went onto a pump.
I got given one by DSN when I did DAFNE course.

Ask your DSN and then get your strips changed to match it.


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## Jimmy Keenan (Feb 12, 2017)

I have asked my constituency MSP to have look at getting me funding for the Libre on the grounds that it allows me to enjoy the "outdoor " activities I did before diagnosis. I read somewhere that funding was available in some parts of England. Not holding my breath about the outcome!!!


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## grovesy (Feb 12, 2017)

Welcome.


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## Jimmy Keenan (Feb 12, 2017)

grovesy said:


> Welcome.


Glad to be here


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## Mini-Vicki (Feb 12, 2017)

Smiric said:


> No I don't, that sounds awesome. Where would I acquire one of those? I'm gonna be completely honest and say I'd probably still use the CGMs reading pre-meal. Only double check when I'm low/before driving and occasionally if I think I haven't done one for a while.



I also have a smart meter. The Accu Chek Aviva Expert, as someone else has. It's really useful, and once set up, will calculate how much insulin you need for a meal, and what type of correction you need if you test later. 
Ask your DSN for a smart meter. There's several out there, but the accu chek is the best I've used. My DSN gave me one, and a spare. They normally have loads hanging around! 
As for the libre, I'm about to commence a trial with one for two weeks under my local hospital. Which means I get to keep the handset  these trials are trying to prove and improve the accuracy of the meter in order for the NHS to fund them. However, as it measure the glucose of interstitial fluid and not blood, it can never be as accurate as a finger prick device, and therefore, I'm afraid, unlikely to be approved by the DVLA etc for driving etc.


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## Smiric (Feb 13, 2017)

Mini-Vicki said:


> I also have a smart meter. The Accu Chek Aviva Expert, as someone else has. It's really useful, and once set up, will calculate how much insulin you need for a meal, and what type of correction you need if you test later.
> Ask your DSN for a smart meter. There's several out there, but the accu chek is the best I've used. My DSN gave me one, and a spare. They normally have loads hanging around!
> As for the libre, I'm about to commence a trial with one for two weeks under my local hospital. Which means I get to keep the handset  these trials are trying to prove and improve the accuracy of the meter in order for the NHS to fund them. However, as it measure the glucose of interstitial fluid and not blood, it can never be as accurate as a finger prick device, and therefore, I'm afraid, unlikely to be approved by the DVLA etc for driving etc.


Any room left on that trial? =P .. seriously though?    

So far mine's been +/- 1mmol, which isn't too shabby. Just gotta be careful around periods of rapid blood sugar change. Not too fussed about the whole driving aspect cause I don't drive very much at all - trying to do my bit for the environment =)


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## mikeyB (Feb 13, 2017)

While everybody is piling in on this thread, smiric, I meant £100 pound a month as a one off payment. And frankly, it doesn't matter how long you bang on about the injustice of all this, the routine supply of CGMs is not going to happen. Ever. We have diabetics on here who were around before fingerprick blood tests, and had multi use insulin needles and glass syringes and all the primitive paraphernalia. They're still around, without the benefit of CGMs for years. 

And if you can't afford the Libre costs, don't use it. It's not essential. I use it because I can afford to buy a box of 10 sensors without blinking just to save on postage. I know that's not right, its just the way it is.


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## mikeyB (Feb 13, 2017)

As a footnote, if you drive on the basis of a Libre reading, you are breaking the law. The requirement is a fingerprick test.  If you were to have an accident, you would have no medical defence.


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## Smiric (Feb 13, 2017)

mikeyB said:


> While everybody is piling in on this thread, smiric, I meant £100 pound a month as a one off payment. And frankly, it doesn't matter how long you bang on about the injustice of all this, the routine supply of CGMs is not going to happen. Ever. We have diabetics on here who were around before fingerprick blood tests, and had multi use insulin needles and glass syringes and all the primitive paraphernalia. They're still around, without the benefit of CGMs for years.
> 
> And if you can't afford the Libre costs, don't use it. It's not essential. I use it because I can afford to buy a box of 10 sensors without blinking just to save on postage. I know that's not right, its just the way it is.


Couple of points to make about your response:

1) I'm hoping if I bang on about it for long enough, then maybe the injustice will lessen and something will actually be done about it.
2) Just because they're still around, it doesn't mean they're healthy. And even if they are healthy (which I hope they are), they're not as healthy as they would have been if they had access to better monitoring equipment.
3) You've not mentioned why you think it'll never happen.
4) It isn't _technically _essential, but essentially it's essential. What I mean by that is that, without it, I've been frequently stressing about what my blood sugars are - and I don't want to be testing 20 times a day (roughly the amount I'm doing now I've got the libre) to mentally appease myself - and not only do I not want to do that, but that would cost a fortune in testing strips for the NHS.
5) "I know that's not right, it's just the way it is" isn't the best way of thinking about things, as it's not very conducive to change/progress.
6) I said I double check with a meter before driving. Based on my experience of the libre so far, accuracy-wise, I personally don't think I'd have to, but I shall follow the guidelines until they change.
7) Stating it as £100 a month as a one off payment makes it sound better than it is... which is a repeatable payment of £100 _every month_ just to have access to adequate monitoring to keep us as healthy as possible. (I disagree that blood testing is adequate in the face of this new technology - it was bearable, but certainly not good enough)


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## grovesy (Feb 13, 2017)

Some Type 1 have enough trouble getting prescribed enough test strips as it stands at present.


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## Smiric (Feb 13, 2017)

grovesy said:


> Some Type 1 have enough trouble getting prescribed enough test strips as it stands at present.


Wow, it's even worse than I thought. If they're like me though, it'd cost the NHS less whilst also making it easier for them to control their blood sugars (though I'm not saying this would be the same for everyone, of course).


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## grovesy (Feb 13, 2017)

Smiric said:


> Wow, it's even worse than I thought. If they're like me though, it'd cost the NHS less whilst also making it easier for them to control their blood sugars (though I'm not saying this would be the same for everyone, of course).


Some are been told to only test 4 times a day.
If you are Type 2 you are lucky if you get prescribed a meter and if you do they too may only be limited to the number is strips.


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## Ginny03 (Feb 13, 2017)

grovesy said:


> Some are been told to only test 4 times a day.
> If you are Type 2 you are lucky if you get prescribed a meter and if you do they too may only be limited to the number is strips.


I was once told that three times a day was too many and that really I didn't need to be testing more than once or twice - I then treated the nurse to a nice lecture on clinical guidelines!


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## grovesy (Feb 13, 2017)

Ginny03 said:


> I was once told that three times a day was too many and that really I didn't need to be testing more than once or twice - I then treated the nurse to a nice lecture on clinical guidelines![/QUOT
> 
> The other thing I did not mention either was been try to be changed to meters with fewer features or cheaper strips. I even saw post elsewhere recently of someone who was registered blind being defined a talking meter.


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## New-journey (Feb 13, 2017)

I am feeling for you! I also would love to afford a libre and going through a financially hard time so taking a break from it.  I wish you could get funding and sorry have no idea how. I am one of the type ones who was told two weeks ago to only test four times a day and they took away my meter and gave me a cheaper one.


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## grovesy (Feb 13, 2017)

New-journey said:


> I am feeling for you! I also would love to afford a libre and going through a financially hard time so taking a break from it.  I wish you could get funding and sorry have no idea how. I am one of the type ones who was told two weeks ago to only test four times a day and they took away my meter and gave me a cheaper one.


How are you getting on with the cheaper one?


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## Northerner (Feb 13, 2017)

Personally, I think we get a pretty good deal as Type 1 diabetics from the NHS. Everything is free, including non-diabetic prescription items. Issuing Libres to all the Type 1s in the UK would add over half a billion to the NHS bill for us (approx 420,000 x £1200). T1s in the US have seen the monthly costs of managing their condition sky-rocket, just for the basics like insulin - even with good insurance they have to make payments, often of hundreds of dollars  I remember asking the question on my diabetes course 'what happens in places like India when a family can't afford the medication for their T1 child?', answer was 'they die'  There are many very debilitating conditions in this country that don't get the kind of privileges we do - asthma springs to mind, so we get a pretty good deal. If £500m was available (which, despite our 'strong economy' isn't, apparently) it would more sensibly go to newly-diagnosed Type 2 so they had access to test strips and instruction in order to learn how to manage their diabetes and avoid complications - that would most certainly save the NHS long-term.


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## Pumper_Sue (Feb 13, 2017)

Smiric said:


> Just because they're still around, it doesn't mean they're healthy. And even if they are healthy (which I hope they are), they're not as healthy as they would have been if they had access to better monitoring equipment.


Erm how do you come up with that statement? I'm one of those that had glass syringes back in the 1960's the only testing available were urine testing for glucose content. I managed quite happily to go through life including running at county level for x-country working on farms for many years and running my own stud farm. Oh and as an added bonus I have no diabetes complications either.

This will probably sound very rude but it isn't meant to be........... just be thankful for what you have which is life, insulin, test strips and food in your belly. That's a lot more than many people have. Bottom line is the NHS is broke.


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## everydayupsanddowns (Feb 13, 2017)

Hi @Smiric

You'll be pleased to hear that the process is well underway to examine if, how and in what circumstances Libre can be made available on the NHS.

One small part of that is to get the Libre listed as a prescribable item. I keep hearing rumours that this is edging ever closer. Fingers crossed that happens soon. If it were... and if you had a very supportive GP... I do wonder whether you could have a conversation that went something like, "I am currently using x boxes of strips at £y a month, would you be happy to supply my with one sensor a month, I'll buy the other one, and then I can make do with only z boxes of strips, I'll have better outcomes and the saving to the practise budget will be £££."

As to access to Libre and other CGM on the NHS... here are some of my thoughts:

There are already NICE guidelines which set out criteria under which CGM can be *considered* (NICE-speak for its weakest recommendation). The update came out in 2015 and reviewed all published research, though sadly the Libre launched too late to be considered as part of the literature review. The recommendations focus around impaired hypoglycaemia awareness, where the evidence is stronger, and also a little about reducing high A1cs.

There are reasons why the recommendation is weak. It is because
a) The technology is very expensive
b) When you give people access to it, you don't always see the benefits you'd hoped for. Sometime you don't see any benefits at all
c) You have to use it a LOT, over 70% of the time, to get what little benefits there are (at a population level)
d) Many (most?) people with T1D, even if they are very keen, find it difficult to commit to that - and expensive stuff sat in a drawer is no use to anyone.

NICE ran a completely new piece of diabetes cost modelling to test what happens. This was part of examining the cost vs benefit of different amounts of test strips a day, and also CGM. And measuring them against improvements in outcomes, and how much you could theoretically save by having people healthier as a result of spending the money up front.

I was fortunate enough to be part of the committee that reviewed that evidence. And I was shocked at just how poor it was. The model was run and rerun over the lifetime of an average patient to give the technology its best chance. But with the good quality published evidence at the time, the average person simply did not do better enough to make enough difference. CGM as it stood at the time was simply far too expensive and didn't improve things enough. Diabetes complications are horrendously expensive (financially and individually), but CGM didn't save enough to balance the books.

So IMO we need 2 things:
1. Targetted use of CGM in the people who need it most AND can get good outcomes with it. This is more of a niche population than we imagine. I suspect a very large proportion of people with T1D in the UK have never even heard of CGM, much less want one.
2. Better research results from newer technologies that show more of an improved outcome, without alarm-fatigue, over-treating, increased anxiety, 'turning off all the alarms' and burnout which can all associate with CGM use.

I am absolutely convinced that CGM has an important role to play in the future of T1 diabetes treatment, but it remains to be seen how that will be able to work in practice, particularly with the current NHS financial climate.

EDIT: Interestingly, regarding the Libre, Diabetes UK are on the case and published this today - https://www.diabetes.org.uk/Upload/Type 1/Flash Monitoring Group Public Statement.pdf


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## Northerner (Feb 13, 2017)

Thanks for that very informative post Mike  I was aware that there was an assessment going on, so that clarifies the situation very well.


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## Smiric (Feb 13, 2017)

Ginny03 said:


> I was once told that three times a day was too many and that really I didn't need to be testing more than once or twice - I then treated the nurse to a nice lecture on clinical guidelines!


Crazy. When was this told to you may I ask?


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## Smiric (Feb 13, 2017)

Northerner said:


> Personally, I think we get a pretty good deal as Type 1 diabetics from the NHS. Everything is free, including non-diabetic prescription items. Issuing Libres to all the Type 1s in the UK would add over half a billion to the NHS bill for us (approx 420,000 x £1200). T1s in the US have seen the monthly costs of managing their condition sky-rocket, just for the basics like insulin - even with good insurance they have to make payments, often of hundreds of dollars  I remember asking the question on my diabetes course 'what happens in places like India when a family can't afford the medication for their T1 child?', answer was 'they die'  There are many very debilitating conditions in this country that don't get the kind of privileges we do - asthma springs to mind, so we get a pretty good deal. If £500m was available (which, despite our 'strong economy' isn't, apparently) it would more sensibly go to newly-diagnosed Type 2 so they had access to test strips and instruction in order to learn how to manage their diabetes and avoid complications - that would most certainly save the NHS long-term.


Oh, absolutely. We do get a lot for free and I'm very grateful for that. However, even though I am grateful, that doesn't mean I'm going to sit back and let the system make the progress with no influence from me, because systems in my experience are notoriously slow at doing anything. I completely agree that people in the US are being royally screwed as well, and we do definitely have it much better than them as well as people in India. But thinking in those terms "oh, but at least we've not got it as bad as X or Y" leads to a reduced pressure from us and therefore likely slower progress where a lot of progress still does need to be made. Price-wise, it wouldn't add as much as that to the NHS bill, because you've got to factor in that people will use less testing strips, and factor in the health benefits and increased productivity of people who are healthier due to better monitoring, and happier because of a reduced cognitive load.

Hopefully that all made reasonable sense - I'm writing this at 2.7mmol, waiting for the sugar to kick in lol.


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## Smiric (Feb 13, 2017)

Pumper_Sue said:


> Erm how do you come up with that statement? I'm one of those that had glass syringes back in the 1960's the only testing available were urine testing for glucose content. I managed quite happily to go through life including running at county level for x-country working on farms for many years and running my own stud farm. Oh and as an added bonus I have no diabetes complications either.
> 
> This will probably sound very rude but it isn't meant to be........... just be thankful for what you have which is life, insulin, test strips and food in your belly. That's a lot more than many people have. Bottom line is the NHS is broke.


First off, let me say that I'm very glad that you are well. I feel like I can quite easily make that statement, though - would you not agree that you would be healthier with access to better monitoring? You'd have had better sugar control throughout, which means less damage done to all of your cells. The same applies to me too, just to a lesser extent as I've not had diabetes for as long (13 years now), so the care was better when I was first diagnosed - although, looking back, there was still a lot of horrible advice given to me. I would say the exactly the same of people being diagnosed now, too, because in the years to come the care will increase and therefore less damage will be done to people with future diagnoses compared to them.


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## mikeyB (Feb 13, 2017)

Smiric, quit will you. Your first comments upset PumperSue, and do you think repeating that she would be healthier than she is is going to help? Give us a break.


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## Rosiecarmel (Feb 13, 2017)

I'd say that 52 years with no diabetes complications is a sign that @Pumper_Sue is pretty healthy indeed!


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## Smiric (Feb 13, 2017)

everydayupsanddowns said:


> Hi @Smiric
> 
> You'll be pleased to hear that the process is well underway to examine if, how and in what circumstances Libre can be made available on the NHS.
> 
> ...




Thanks a lot for your very informative reply!

I shall definitely have a word with my GP after doing the calculations. As I've said, compared to what I was using before I'm certain I could save the NHS money by transferring my monitoring over to the CGM with test strip supplementation. I would definitely be interested in the concrete numbers, though.

Only heard of NICE the other day, and that was through my doctor telling me that they don't recommend post-prandial testing (which he subscribes to for some strange/respect-reducing reason). So my view of them is not the greatest, let's just say that.

I can categorically say that the CGM has helped me immensely already - and I've only had it just shy of two weeks. It's helped me to notice a pattern of hypoglycemia during the night, leading me to reduce my basal dosage by nearly half (so far). It's also made me realise that my hypoawareness, while OK during the day (notice at around 3.5mmol) is significantly reduced at night (2.5mmol) - something I likely would not have picked up on through testing alone, as when I've done tests in the night, they tended to be exactly half way through my sleep, whereas the hypos are occurring roughly 2/3s through it. Obviously this is only anecdotal though - although I've seen so many anecdotal stories online in a similar vein that my confidence in CGMs is clearly a lot higher than NICEs.

Not sure if it's because I still have low blood sugar or not, but what do you mean by you have to use it over 70% of the time to see benefits? Do you mean on an individual basis? Because I don't see why people wouldn't use it way over 70% of the time being as it's in their arm anyway - I personally use it for probably around 90% of the time.

The committee stuff sounds very interesting, may I ask when that was? Also, what are your opinions/what did the evidence suggest was the reason why it didn't improve patients health enough?

I completely agree with your two points. Education is the key to the first one - the more people we can get to apply the pressure, the quicker things will happen - assuming the evidence for its efficacy is sufficient, that is. Actually, education is the key to both. It's very easy to overcorrect using a CGM. You have to be aware of insulin times (onset, peak & duration) as well as many other factors that might be affecting blood sugar before you take a correction bolus.

Thanks a lot for the link, I'll take a look now. Also, thanks again for such a great response. As a follow-up question - where can I make my voice heard about the push for CGMs?


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## grovesy (Feb 13, 2017)

Smiric said:


> First off, let me say that I'm very glad that you are well. I feel like I can quite easily make that statement, though - would you not agree that you would be healthier with access to better monitoring? You'd have had better sugar control throughout, which means less damage done to all of your cells. The same applies to me too, just to a lesser extent as I've not had diabetes for as long (13 years now), so the care was better when I was first diagnosed - although, looking back, there was still a lot of horrible advice given to me. I would say the exactly the same of people being diagnosed now, too, because in the years to come the care will increase and therefore less damage will be done to people with future diagnoses compared to them.


Did you not read the reply everydaysupsandowns posted, it had some pertinent information to the subject.


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## Smiric (Feb 13, 2017)

mikeyB said:


> Smiric, quit will you. Your first comments upset PumperSue, and do you think repeating that she would be healthier than she is is going to help? Give us a break.


My comments weren't intended to upset, and I apologise if I did cause any upset. I was simply point out that better monitoring, and therefore likely better control = healthier. This applies to all of us, so I wasn't picking on anyone in particular, and if it came across that way then I'm sorry.


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## Smiric (Feb 13, 2017)

grovesy said:


> Did you not read the reply everydaysupsandowns posted, it had some pertinent information to the subject.


Just responded to it.. had to wait for sugar to kick in =)


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## Smiric (Feb 13, 2017)

Rosiecarmel said:


> I'd say that 52 years with no diabetes complications is a sign that @Pumper_Sue is pretty healthy indeed!


Agreed - she's clearly done very well!


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## grovesy (Feb 13, 2017)

Smiric said:


> Just responded to it.. had to wait for sugar to kick in =)


I think we posted at the same time.
Even if you do not personally agree with them NICE are the body that scrutinize all manner of Health condtions, and recommends how conditions are treated.


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## pottersusan (Feb 13, 2017)

Smiric said:


> That's ridiculous.


I'm still on the case! but am not holding my breath.


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## Ginny03 (Feb 13, 2017)

Smiric said:


> Crazy. When was this told to you may I ask?


Summer 2015 I think


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## trophywench (Feb 13, 2017)

Smiric said:


> I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption. Haven't done my own research on the matter as of yet though. I don't mind doing MDIs though - they're a minor inconvenience. It's just the constant thought process/calculations that bug me - something that a CGM helps a lot with as it happens =P




Soooooo - what about the flippin scar tissue giving yourself jabs for 40 years causes then?  I was sticking a 4mm needle in myself at least 5 x daily.  I can assure you I have shedloads of now non-absorbent areas all over my thighs and abdomen.  Now on a pump - it's once every 2 or 3 days.   Sure the 'introducer' needle for pump cannulas is longer than 4mm - it has to be  in order for the pointy bit at the business end to protrude through the bit of soft Teflon tubing that stays inside you when you remove the needle, then the insulin drips though that Teflon bit and stays in you thereafter.  They aren't like 'vein' cannulas, the sort they infuse drugs, glucose drips etc through.

Does not compute, Jim !


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## Smiric (Feb 13, 2017)

grovesy said:


> I think we posted at the same time.
> Even if you do not personally agree with them NICE are the body that scrutinize all manner of Health condtions, and recommends how conditions are treated.


Well after many years living with this, I think their scrutiny needs to be more scrutinizing, because I think everyone can agree that post-prandial tests are incredibly important in managing the condition well.


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## Smiric (Feb 13, 2017)

Ginny03 said:


> Summer 2015 I think


Wow. I was hoping that date would be significantly further back! I hope that that kind of thinking is being quashed, especially in regards to medical practitioners.


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## Pumper_Sue (Feb 13, 2017)

Smiric said:


> First off, let me say that I'm very glad that you are well. I feel like I can quite easily make that statement, though - would you not agree that you would be healthier with access to better monitoring? You'd have had better sugar control throughout, which means less damage done to all of your cells. The same applies to me too, just to a lesser extent as I've not had diabetes for as long (13 years now), so the care was better when I was first diagnosed - although, looking back, there was still a lot of horrible advice given to me. I would say the exactly the same of people being diagnosed now, too, because in the years to come the care will increase and therefore less damage will be done to people with future diagnoses compared to them.


I have very good monitoring thanks  Diabetes wise I couldn't be healthier, a lot of that has to do with doing my research and learning for myself over the years how to look after myself as most of  the forum members do.
Basically you are trying to teach the forum members to suck eggs 
Your comments regarding the use of your Libre are not recommended by the manufacture and downright dangerous imho and your knowledge regarding CGM etc leaves a lot to be desired. Basically as you don't understand and haven't made any effort over the past 13 years to help yourself I doubt many people will listen to your arguments.
Please also note there are many thousands of type 1's who have lived with diabetes for a lot longer than I have and also have no complications


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## Smiric (Feb 13, 2017)

trophywench said:


> Soooooo - what about the flippin scar tissue giving yourself jabs for 40 years causes then?  I was sticking a 4mm needle in myself at least 5 x daily.  I can assure you I have shedloads of now non-absorbent areas all over my thighs and abdomen.  Now on a pump - it's once every 2 or 3 days.   Sure the 'introducer' needle for pump cannulas is longer than 4mm - it has to be  in order for the pointy bit at the business end to protrude through the bit of soft Teflon tubing that stays inside you when you remove the needle, then the insulin drips though that Teflon bit and stays in you thereafter.  They aren't like 'vein' cannulas, the sort they infuse drugs, glucose drips etc through.
> 
> Does not compute, Jim !


As I say, I've not done enough research into the matter myself. I completely agree that sticking anything into the tissue for a long enough period of time is going to create problems. I just don't know whether more frequent/smaller needles is better than a larger cannula left in for an extended period of time or vice-versa. If anyone can point me in the direction of any studies regarding this, then I would be very grateful.


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## everydayupsanddowns (Feb 13, 2017)

Smiric said:


> Thanks a lot for your very informative reply!
> 
> I shall definitely have a word with my GP after doing the calculations. As I've said, compared to what I was using before I'm certain I could save the NHS money by transferring my monitoring over to the CGM with test strip supplementation. I would definitely be interested in the concrete numbers, though.



Don't rush in yet. By all means get your head around the numbers as they apply to you... but for the Libre, there is no easy way your GP can prescribe it (yet). It isn't on their system.


> Only heard of NICE the other day, and that was through my doctor telling me that they don't recommend post-prandial testing (which he subscribes to for some strange/respect-reducing reason). So my view of them is not the greatest, let's just say that.
> 
> I can categorically say that the CGM has helped me immensely already - and I've only had it just shy of two weeks. It's helped me to notice a pattern of hypoglycemia during the night, leading me to reduce my basal dosage by nearly half (so far). It's also made me realise that my hypoawareness, while OK during the day (notice at around 3.5mmol) is significantly reduced at night (2.5mmol) - something I likely would not have picked up on through testing alone, as when I've done tests in the night, they tended to be exactly half way through my sleep, whereas the hypos are occurring roughly 2/3s through it. Obviously this is only anecdotal though - although I've seen so many anecdotal stories online in a similar vein that my confidence in CGMs is clearly a lot higher than NICEs.



Don't fall into the 'newspaper' trap of thinking that NICE is just one thing. One dusty room making OBSAT* decisions. It is large organisation that exists to try to unpick the complexity of healthcare and spending in a modern NHS. When you have A Thing, what is the best way to go about treating it? What are the better choices? What works? Plus... since there isn't enough money to do everything for everyone - how do you make sure the money being spent on Very Expensive Thing A wouldn't be better of, more effective, and help more people if it were spent on Very Expensive Drug B.
(* Old Boys Sat Around a Table - though I am sure there are some NICE groups that make just such decisions)

So in terms of T1D, NICE issue 'guidelines' for all sorts of things and make them available to Drs and also to patients, which go through all the options and, as far as possible, try to work out what works best on average for the most people. What should be tried first. What should be tried next. For the T1D in adults guideline they put together a 'guideline development group'. An eminent chair, respected physicians, DSNs, Dietician, Pharmacist, Health Economists, chemists, GP, research specialists, people who know the NICE process inside out *and* a couple of punters. I was one.

You can read more and/or download the guideline here: https://www.nice.org.uk/guidance/ng17?unlid=7810374862016912145443

We worked on it for something like 3 years. And it was _only_ an 'update' of the old guideline!

It's great to hear that you have got so much out of CGM. My experience is very much the same. They are a MASSIVE help to me. I really wanted the new Guideline to be able to recommend CGM more widely. But that was simply not what the evidence showed. In NICE terms, how you feel, what the Drs us in their clinical practice or what individuals in the group 'like' doesn't mean very much. It boils down to: What benefit can you clearly demonstrate in a clinical trial for the right population with a good comparison. And is it a big enough trial for the numers to make sense? Or is it just a dozen people? What happens to A1c? What happens to hypoglycaemia? What about Severe Hypoglycaemia? Ambulance callouts etc?

And it's not just hard numbers... NICE also factor in 'quality of life' improvements using something called QALYs (Quality Adjusted Life Years) - even if you don't get better, do you feel better?

As I said the literature search that we undertook explicitly excluded Libre - there was nothing published in time for us to look at.

Incidentally... odd that your Dr suggests NICE don't advocate post-meal testing. They have post meal recommended targets (5.0-9.0mmol/L after 90 minutes for people who choose to test post-meal). I have heard DAFNE prefer people not to test after meals, but that seems to be because those results are often muh harder to interpret and some people can massively over-correct a post-meal high forgetting that they still have hours of insulin still active from the pre-meal dose.



> Not sure if it's because I still have low blood sugar or not, but what do you mean by you have to use it over 70% of the time to see benefits? Do you mean on an individual basis? Because I don't see why people wouldn't use it way over 70% of the time being as it's in their arm anyway - I personally use it for probably around 90% of the time.


This wasn't evidence for Libre, this was for other CGM systems. Research showed that the benefit continued as long as the device was used for around 70% of the study period. You couldn't just wear one sensor and 'fix things' in any permanent way.



> I completely agree with your two points. Education is the key to the first one - the more people we can get to apply the pressure, the quicker things will happen - *assuming the evidence for its efficacy is sufficient*, that is. Actually, education is the key to both. It's very easy to overcorrect using a CGM. You have to be aware of insulin times (onset, peak & duration) as well as many other factors that might be affecting blood sugar before you take a correction bolus.



Absolutely. But that is the real issue. There are periodic 'petitions' that do the rounds. But if the result of them is that they push CGM to the front of the queue to be received and this is BEFORE the quality evidence is available it would be entirely counter-productive. The review would happen using older, weaker evidence and bang goes the chance. CGM would then be firmly back of the queue.

What you have to realise is that you (and me) are one of a fairly niche population with a niche disease who seem to get much better than average results from using CGM. Many forum members appear to be in the same group. But versus the T1 population as a whole we are a tiny minority. One consultant I spoke to suggested that of the people in his clinic who they do manage to get CGM for, perhaps only 10% continue with it. There are many, many reasons why people to stop, but they DO stop - even when the funding has been arranged.

*What to do next?*
Ignore the national picture - that is being dealt with.

My suggestion? Speak to your clinic. Show them your results. Show them how access to continuous data improves your outcomes and quality of life. Ask about funding arrangements in your area. Look up INPUT and see what they suggest. If no one in your area gets CGM, why not? Do your CCG (or whatever they are called this week) have a policy on CGM, or T1 Diabetes generally? If not... can you get involved as a patient rep?


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