Any funding available for CGMs at all?

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Some Type 1 have enough trouble getting prescribed enough test strips as it stands at present.
 
grovesy said:
Some Type 1 have enough trouble getting prescribed enough test strips as it stands at present.
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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).
 
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).
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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.
 
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.
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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!
 
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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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.
 
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.
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How are you getting on with the cheaper one?
 
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.
 
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.
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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.
 
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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Thanks for that very informative post Mike 🙂 I was aware that there was an assessment going on, so that clarifies the situation very well. 🙂
 
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!
Click to expand...
Crazy. When was this told to you may I ask?
 
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.
Click to expand...
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.
 
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.
Click to expand...
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.
 
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.

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 gove people access to it, you don't always see the benefots 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
Click to expand...


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