Libre 2 continued NHS funding after 6 months?

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Eternal422

Eternal422

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Reading through some documents for my Integrated Care Board (the organisation replacing the old CCGs), in their Flash Glucose Monitoring Policy document there is a section about a review after 6 months to see if there is “demonstrable improvement in one or more of the indicators” :

1. Reductions in severe/non-severe hypoglycaemia
2. Reversal of impaired awareness of hypoglycaemia
3. Episodes of diabetic ketoacidosis
4. Admissions to hospital
5. Changes in HbA1c
6. Testing strip usage
7. Quality of Life changes using validated rating scales
8. Commitment to regular scans and their use in self-management

in order to approve continued funding. Now this seems to be a fairly low bar to pass, I can already show reduced testing strip usage as well as regular scans (I’ve already scanned 12 times today and base bolus decisions on the results).

So, I was wondering if anyone has had their review yet and whether it is easy to get continued funding? I would absolutely hate to lose it now having had it for just over 2 months And loving the data now available to me!
 
Eternal422 said:
So, I was wondering if anyone has had their review yet and whether it is easy to get continued funding?
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My 6 month review was supposed to happen in the winter 2019-2020 but didn't happen, and after that I didn't hear anything (and for a year or so the Libre was on my repeat with some annotation that it was in a trial). At some point the annotation disappeared and there was never any review (that I know of).

If you're literally looking at paper I wonder if it still applies now that the NICE guidance has changed? My guess is it's probably not relevant any more and you can forget about it.
 
The policy document is online on the ICB website and dated 1 July 2022, so I guess it is still applicable? However, it also mentions the patient should be told it is a trial and sign a sort of contract, but they never did that with me. Maybe things have moved on already, they contacted me at the end of July to say that I was eligible and didn’t say anything about a trial or review.

I’m probably worrying about nothing - that’s from a lifetime of working in IT and constantly planning for failures and things going wrong!
 
Wow! Just 12 scans so far today! You are very reserved! I rarely manage less than 30 and I am 2.5 years down the line with it! The novelty still hasn't worn off. Maybe I am obsessed!

On a serious note, I would be surprised if there is an official review of your Libre usage, particularly under the current guidelines of all Type 1s being offered it. It may be that your consultant ticks a box after a consultation one day and he might ask you how you are doing with the Libre and obviously look at your Libreview info and just rubber stamp it without any formal reference to it. I very much doubt you would be asked to justify it's continued prescription yourself. In the current climate particularly when clinicians are stretched, giving people the tools to manage their own diabetes makes a lot of sense and takes a bit of strain and guess work off them.
 
Eternal422 said:
However, it also mentions the patient should be told it is a trial and sign a sort of contract, but they never did that with me. Maybe things have moved on already
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That's my guess. They just haven't replaced the wording (since this trial period and the special funding hasn't existed for a while). (I think after the funding went some CCGs kept the trial, but it was more to check to see whether patients were getting something out of the Libre.)

(I did have to sign such a document (though it was mostly a formality because I'd been self funding so I was really just agreeing to continue what I was doing), but such documents did exist and were used before April this year.)
 
Eternal422 said:
The policy document is online on the ICB website and dated 1 July 2022, so I guess it is still applicable? However, it also mentions the patient should be told it is a trial and sign a sort of contract, but they never did that with me. Maybe things have moved on already, they contacted me at the end of July to say that I was eligible and didn’t say anything about a trial or review.

I’m probably worrying about nothing - that’s from a lifetime of working in IT and constantly planning for failures and things going wrong!
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I had to sign a contract, and was told it would be reviewed in 6months. Well, I did have a phone call appointment with the hopsital, and nothing was said about not continuing it, it was just a general 'how are you doing' review. Then I had another one 6 months after that, when they said, we'll talk to you again in a year…and it’s just continuing to be prescribed. I assume it might be different if they could see I wasn’t using it.
 
Thanks both! Sounds like they haven’t updated their policy document yet. It also sounds encouraging that I’ll get to keep the Libre too! I just can’t imagine being without it now!

@rebrascora - glad you’re still getting so much from it too! You’re right, giving us the tools to self manage is a sensible approach as it reduces their workload and issues down the line for us! I read in Think Like A Pancreas that we get maybe 2 hours a year (if we’re lucky) with a DSN or consultant but the average T1 spends something like 5000 hours per year managing their condition themselves. So by far the majority of the time we’re left to manage everything ourselves, so having something like the Libre definitely makes sense!
 
Robin said:
Then I had another one 6 months after that, when they said, we'll talk to you again in a year…and it’s just continuing to be prescribed.
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I've just had my usual reviews (which in my area are with my GP, normally). In one of them I think my GP asked me whether I was still liking the Libre. This year there was one of the hospital team present (one spends a day a month in the GP surgery for such reviews) and when I asked about Libre 2 they just said "Oh, aren't you on that yet. Let me change that now.".

But anyway I think the whole thing was mostly a formality. They were mostly looking to see whether people were getting value out of it (some people just don't find it helpful for whatever reasons). I suspect (had the trials finished) everyone who wanted it would have been continued anyway.
 
@Bruce Stephens If you wanted to upgrade, have you not seen the stickers on the Libre box encouraging people to upgrade to Libre 2. I am not sure if this is just targeted at private self funding customers but I kind of assumed that it would somehow upgrade our NHS prescription also. Not sure of the logistics of how the whole ordering process works with Libre on prescription.
I am holding out until the bitter end with the original. I like it and it works for me and I don't have a compatible phone and they aren't doing the Libre 2 reader anymore, but instead a locked mobile with the app. which doesn't sound nearly so nifty to carry about and will probably have the same issues with not being as good at picking up the sensor signal as the reader. Maybe I am becoming more of a dinosaur as I get older but why fix what ain't broken!
 
rebrascora said:
If you wanted to upgrade, have you not seen the stickers on the Libre box encouraging people to upgrade to Libre 2.
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I didn't care that much. I was intending to ask at the next review, so I did. (If I'd wanted to I'm sure I could just have got a phone appointment with the pharmacist and she'd have done it just as easily.)
 
I was told back in April when I was given my first libre 2 , that it was initially for a 6 month trial and that if i got along with it ok, it would become permanent, I have the 6 month review with my Diabetes consultant on Tuesday next week so will find out for certain then, but I have noticed that it has been added to my repeat prescriptions now.
Martin
 
I was a 'late starter' to Libre but still on Libre 1, which wasn't at all successful for me, miles out from fingerpricks in either direction but simply, never ever consistently either up or down, during each 14 day span, consequently wasn't expecting much when it was changed to Libre 2 - but OMG what a difference! In all, much more accurate - but more sensor failures, which have all so far been replaced NP.
 
Had my dietician appointment today and was surprised to find that my DSN whom I had only spoken to on the phone previously was there to! So, first time actually meeting her face to face (well, mask to mask as it were). Really chuffed with their reaction to my Libre charts - they are so pleased that what I am doing is making big improvements and they can see that it’s made a big difference already to me.

I did ask about the Libre review, saying I had seen it on an ICB policy document, but she said don’t worry as they wouldn’t take it off me and that we never had this conversation about a review! She also said if the GP stops prescribing it to just give her a call and she would sort it out for me to have it continued. So pleased!

On a side note from my Libre charts she didn’t think I needed to split my Levemir dose, which I can get on board with now as the vast majority of my daily charts show normal levels and post-meal peaks at the end of the day just the same as at the start, so it does look like the Levemir is lasting from roughly 10pm when I take it through to at least 8pm the next day which covers the periods when I eat. Interestingly she said that the Libre estimated HbA1C tended to be pretty accurate, which if true is brilliant as it will be around 46, far better than my last test of 58! My GP should be asking for another HbA1C test at the start of December, so fingers crossed for then!
 
So pleased you feel reassured about the Libre being continued and about how well you are doing and that you feel like you have really good support from your DSN.
 
Glad you had such a positive appointment @Eternal422 🙂
 
trophywench said:
Libre always predicts something rather lower than my HbA1c blood tests, I have to say!
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I feel the blood test will be higher, the Libre estimate seems loads lower than my last blood test and whilst I think I’m improving it’s hard to believe it will be that much! Truth will tell when I have my next blood test in December.
 
Mine is normally about right, but we will see with my next one.
 
Hopefully mine will be somewhere near the Libre figure Too @PhoebeC !

Changed to a new sensor last night and getting some excellent results so far : after the 1 hour warm up Libre 7.9, BG of 8.0, just before lunchtime today, Libre 7.2, BG 7.6. Very impressed! I compared readings allowing for the Libre lag and also at both times when my BG was steady.
 
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