Anyone else approved for Libre 3?

[MarkGeordie]

Had confirmation today that my DSN has had approval from consultant and he is looking at the funding. Once in place they have said a courier will deliver them as you can’t get it through the GP at the moment.

 

[pawprint91]

Very jealous - I asked on Monday and my consultant told me it was a two tier system aimed at people who were hoping to get a bit more support with their diabetes control, so pleased he seems to be right and it will hopefully work well for you 🙂

 

[MarkGeordie]

Yeah it can be frustrating when it’s not available for everyone, fingers crossed it becomes more widely available.

I will of course keep people updated about it and what it’s like etc for people interested.

 

[Leadinglights]

Very jealous - I asked on Monday and my consultant told me it was a two tier system aimed at people who were hoping to get a bit more support with their diabetes control, so pleased he seems to be right and it will hopefully work well for you 🙂

I think the NICE guidelines now say anyone with Type 1 is entitled to a Libre or similar.
There are some threads on how to pursue it.

 

[pawprint91]

I think the NICE guidelines now say anyone with Type 1 is entitled to a Libre or similar.
There are some threads on how to pursue it.

Just to clarify - I have the Libre 2 on prescription but asked if there would be an opportunity to move to Libre 3 at some point in the future 🙂

 

[Twells2Yoda]

Hi, I am T2 diagnosed in 1986 then insulin controlled Basal/Bolus since 1995. I started with Libre in 2016 then moved from Kent after retiral and now back in Scotland where Libre2 provided on prescription. Libre2 has been very good until about 6 months ago started to get a lot of inaccuracies with frequent sensor replacements without quibble by Abbott after giving 3 consecutive logged Accucheck differences greater than 1.2 to 1.5mmol. The Dexcom1 has now been added to formulary listing in East Scotland as an alternative for those having regular problems with Libre but needs to be processed through your diabetes prescriber. My exasperation with the previously long serving great Libre support system means that I am now self funding a trial with Dexcom G7 pending Dexcom1 prescription availability. Now on G7 sensor No.3. On first use of G7 it was consistently within 0.5 agreement with Blood Meter (after 5 minutes delay always allowed). Sensor No.2 on day 8 (of 10 days life) gave a sudden very high reading of 17.5 v. 9.5 BM with no apparent reason and persisted through recalibration but stabilised again after another 12 hours. Dexcom immediately sent a replacement sensor after reporting and happy to say that sensor no.3 is now stabilised and accurate after a very volatile first 12 hours of stabilisation indicating consecutive hypo alarms with BM showing 5 -6 mmol readings. Running another (probably my last available) Libre 2 for comparison consistently gives me 1-2 mmol higher readings than the Dexcom so I think I will be sticking with Dexcom! Hopefully Dexcom1 will be available before the piggy bank runs out. 🙂

 

[Proud to be erratic]

Hi, I am T2 diagnosed in 1986 then insulin controlled Basal/Bolus since 1995. I started with Libre in 2016 then moved from Kent after retiral and now back in Scotland where Libre2 provided on prescription. Libre2 has been very good until about 6 months ago started to get a lot of inaccuracies with frequent sensor replacements without quibble by Abbott after giving 3 consecutive logged Accucheck differences greater than 1.2 to 1.5mmol. The Dexcom1 has now been added to formulary listing in East Scotland as an alternative for those having regular problems with Libre but needs to be processed through your diabetes prescriber. My exasperation with the previously long serving great Libre support system means that I am now self funding a trial with Dexcom G7 pending Dexcom1 prescription availability. Now on G7 sensor No.3. On first use of G7 it was consistently within 0.5 agreement with Blood Meter (after 5 minutes delay always allowed). Sensor No.2 on day 8 (of 10 days life) gave a sudden very high reading of 17.5 v. 9.5 BM with no apparent reason and persisted through recalibration but stabilised again after another 12 hours. Dexcom immediately sent a replacement sensor after reporting and happy to say that sensor no.3 is now stabilised and accurate after a very volatile first 12 hours of stabilisation indicating consecutive hypo alarms with BM showing 5 -6 mmol readings. Running another (probably my last available) Libre 2 for comparison consistently gives me 1-2 mmol higher readings than the Dexcom so I think I will be sticking with Dexcom! Hopefully Dexcom1 will be available before the piggy bank runs out. 🙂

Hello @Twells2Yoda. Welcome to the forum. As someone who found Libre a blessing, despite my body not seeming to like it (50% failure rate) and now on Dexcom One - I found your post informative.

When making comparisons, I find the distinction between Libre 2 and Dexcom One rather akin to the American idea of comparing apples and oranges: both edible fruits, but different packaging, one needs peeling and can be messy and different forms of sweetness, texture etc. And so it is with Libre 2 and Dexcom One. Both CGMs, one flash scan the other real time; Libre is a 14 day all in package as a combined sensor with transmitter whereas the Dex One sensor lasts 10 days, but the transmitter is a separate component and last 90 days. The apps on your phone are similar yet different in detail and a Libre Reader is obtainable through prescription, whereas the Dexcom Receiver is not on the NHS Formulary so has to be self-funded.

I'm intending to self-fund Dex G7 when my current Dex One transmitter expires - to see if that is better than Dex One, which is better for me than Libre, but still far from great. So your observations about Dex G7 are very helpful. Thanks.

 

[MarkGeordie]

My Libre 3 funding has been approved and I now have access to a direct portal with Abbott specifically for Libre 3 which was set up by the DSN. Just awaiting first delivery.

 

[barrym]

Lucky chap. I'm so envious. I'm still in a protracted email conversation with Neil O'Brien MP, Minister for Primary Care and Public Health,MP via my MP and getting nowhere.

Is there anything unusual about your diabetes and/or treatment that makes you fit the criteria (what ever that is), such that your DSN thinks L3 would be a benefit?

My only positive response was from Will Quince MP, who pointed out this:

"In order for the Flash Libre 3 device to be added to the formulary, the manufacturer must
apply to the MHRA so that the product can be reviewed in line with its procedures."

Doesn't sound like it's happening anytime soon.

 

[everydayupsanddowns]

I think the NICE guidelines now say anyone with Type 1 is entitled to a Libre or similar.
There are some threads on how to pursue it.

It depends on the variety @Leadinglights

Libre2 and Dexcom One (plus a couple of others) are cost-neutral for T1s when the benefit of CGM and likely improved glucose management is factored in.

But other systems (Dex G6, Dex G7, Medtronic G4, and Libre 3) are still reserved for fewer people under different guidance and a completely different funding arrangement. 🙂

 

[everydayupsanddowns]

My Libre 3 funding has been approved and I now have access to a direct portal with Abbott specifically for Libre 3 which was set up by the DSN. Just awaiting first delivery.

Congrats @MarkGeordie

I’ve still not had a pump clinic at the hospital since the NICE guidance was changed so haven’t been able to ask the question yet!

 

[MarkGeordie]

I’m not sure what the criteria is.

I just expressed interest via DSN, she referred me to consultant, he did a phone conversation with me asking various questions about lifestyle, eating, exercise, hypos, etc.

I then found out funding was approved and Abbott emailed me with access to their Libre 3 portal, explaining about delivery and how to order sensors when needed.

 

[Proud to be erratic]

Lucky chap. I'm so envious. I'm still in a protracted email conversation with Neil O'Brien MP, Minister for Primary Care and Public Health,MP via my MP and getting nowhere.

@barrym, do you think a multi-pronged approach would make any inroads? Should I be writing to my MP and, possibly with others doing this, could we break through the defensive wall?

Is there anything unusual about your diabetes and/or treatment that makes you fit the criteria (what ever that is), such that your DSN thinks L3 would be a benefit?

My only positive response was from Will Quince MP, who pointed out this:

"In order for the Flash Libre 3 device to be added to the formulary, the manufacturer must
apply to the MHRA so that the product can be reviewed in line with its procedures."

But now that Mark Geordie been put on this path, that official MHRA review and approval process must exist. Or how can Abbott be providing their L3 product to an NHS Trust? Is this the chink in the armour that's needed to expose this "dubious" situation? If Mark Geordie's Consultant was doing this in an entirely private capacity, can he arrange provision of a medical product in UK for UK use without MHRA approval.

Doesn't sound like it's happening anytime soon.

I wonder if @BadaBing can throw any light on this anomaly?

 

[MarkGeordie]

It’s clearly got approval otherwise a consultant would not be able to secure the funding to allow me and others In my trust area to have it?

 

[MarkGeordie]

Found this on another forum too so I think it’s just taking time to roll out everywhere …


“At this stage, the FreeStyle Libre 3 system is available via the NHS Supply Chain Insulin Pumps,
Continuous Glucose Monitoring, Closed Loop Insulin Delivery Systems and Associated Products
framework. It is not available for people to purchase directly from Abbott.”

 

[rebrascora]

I wonder if @MarkGeordie 's clinic are involved in some sort of localized trial of the Libre 3 and therefore have more opportunity to prescribe it without the usual criteria applying.

 

[MarkGeordie]

I have an appointment with the DSN on the 20th June so I will see if I can ask what the local criteria is.

 

[Twells2Yoda]

Hello @Twells2Yoda. Welcome to the forum. As someone who found Libre a blessing, despite my body not seeming to like it (50% failure rate) and now on Dexcom One - I found your post informative.

When making comparisons, I find the distinction between Libre 2 and Dexcom One rather akin to the American idea of comparing apples and oranges: both edible fruits, but different packaging, one needs peeling and can be messy and different forms of sweetness, texture etc. And so it is with Libre 2 and Dexcom One. Both CGMs, one flash scan the other real time; Libre is a 14 day all in package as a combined sensor with transmitter whereas the Dex One sensor lasts 10 days, but the transmitter is a separate component and last 90 days. The apps on your phone are similar yet different in detail and a Libre Reader is obtainable through prescription, whereas the Dexcom Receiver is not on the NHS Formulary so has to be self-funded.

I'm intending to self-fund Dex G7 when my current Dex One transmitter expires - to see if that is better than Dex One, which is better for me than Libre, but still far from great. So your observations about Dex G7 are very helpful. Thanks.

Appreciate your response and agree that a closer comparison would be Libre3 v. Dexcom G7 rather than L2 v. D1.
As mentioned, I am grateful for the improvement in control gained from when Libre first became available, even though at the time I had to be self funded as a having a T2 label. Having now used a total of 193 Libre sensors, which I think could almost be compared to Insulin and or Metformin in treatment of diabetes with control and self management advance terms over the years, I guess I am having conscience pricks about deserting from Libre! However the increasing need of reverting to finger pricks with my more recent personal experience of L2 seems to me to justify my move. In fairness to NHS funding policy, it must be difficult to keep up with the technology rate of advance in CGM's such as L3/G7 etc. but I certainly feel that am "back in control" with the G7 so will just have to see if the D1 can also do that.

 

[Proud to be erratic]

Found this on another forum too so I think it’s just taking time to roll out everywhere …


“At this stage, the FreeStyle Libre 3 system is available via the NHS Supply Chain Insulin Pumps,
Continuous Glucose Monitoring, Closed Loop Insulin Delivery Systems and Associated Products
framework. It is not available for people to purchase directly from Abbott.”

Thanks. I probably haven't made clear that my "angst" is really because I don't understand why I can't purchase L3 directly, here in UK. Elsewhere there have been suggestions that the NHS has made some sort of deal with Abbott that currently stops self-funding - but I can't get my mind around why that would be so ...! Equally I can't see why the NHS is so constraining with prescribing L3, even in relation to G6 or G7 ....? L3, G6 and G7 seem to be in similar cost brackets to each other.

I didn't get on too well with L2; too great a failure rate and poor correlation between interstitial and actual BG. I'm finding Dex One, better - but still not particularly close to actual BG. This sustained and irregular differential is increasingly stressful and I have never been able to bolus without finger pricking - something I would be happy to do if I had some confidence that my CGM was about 'right'. I can try out Dex G6 or 7 by self-funding, with the knowledge that G6 locks me into a 90 day transmitter whereas G7 is akin to L2 and L3 in being 14 day setups. But right now I can't even self-fund L3 to see if I'm going to find it compatible to me!

The NHS bureaucracy makes it tricky to try and get brief (short term or one-off) prescriptions to allow a Patient to just "try" and test for compatibility. I think I need a strategy that allows me to see if I can find a workable CGM solution privately, then focus my energy on convincing someone in the NHS this could work for me longer term. Right now the stress of the daily MDI process is getting to me; its my D (albeit a slightly weird T3c D) and I recognise that I have to do my part in finding a better solution. Ironically, if I just gave in and did all the wrong things - while I'd be pretty ill, the NHS would then spend "loads of money" with hospitalisations and probably even putting me on a pump. It's bizarre, to say the least.

 

[everydayupsanddowns]

Found this on another forum too so I think it’s just taking time to roll out everywhere …


“At this stage, the FreeStyle Libre 3 system is available via the NHS Supply Chain Insulin Pumps,
Continuous Glucose Monitoring, Closed Loop Insulin Delivery Systems and Associated Products
framework. It is not available for people to purchase directly from Abbott.”

Yes unfortunately it’s back to the postcode lottery for those devices, where some specialist hospitals /consultants seem to have managed to persuade the local CCG (or whatever they are called this week) that patient care and research evaluation is their responsibility, whereas other hospitals (like mine) just seem to get a blanket ‘NO’ for any application, however appropriate, and funding is denied - even if there is research to show the tech could well lead to a cost saving eg in ambulance callouts or inpatient stay.

It has been really encouraging to see so many more people getting access to funding though. Long may that continue!