Switching from libre 2 to dexcom one

[steveo]

Has anyone done this I've been trying but CCG haven't been very helpful.

 

[barrym]

I haven't, but my consultant said if I wanted to switch to any of the three on my CCG formulary I was just to ask the DSNs to change my prescription.

All well and good, but her advice was to wait for Libre 3 which she considers to be better in a number of areas (not all medical). Still waiting for it to appear on the formulary though

 

[Bloden]

I’m in SW Wales and have been told the Dexcom One will be available on prescription soon, but isn’t just yet. My consultant gave me a Dexcom One kit so that I could give it a go - unfortunately, my phone isn’t compatible...it seems that only Samsung and iPhone are compatible. Something to keep in mind cos the reader costs £60.

 

[Proud to be erratic]

Hello @steveo, below is a short and long answer that I posted earlier this week in the Newbies section:

Hi, short answer not yet.
Dexcom One has been recommended for me by my Endo to my GP. I've spent the last month wading in treacle, trying to get that recommendation translated into a prescription, in Bucks.
My local pharmacy has confirmed they can see it listed but have not provided to anyone; interestingly they can't see a listing for a reader - which specifically interests me since my phone is not compatible (and I like having a reader anyway).
My GP Surgery passed this on 8 Oct to their Primary Care Network (PCN) clinical support team; today a withheld number from this PCN called me today to tell me that the Bucks, Oxford and Berks (West) Integrated Care Board (BOB ICB) had confirmed by phone that this CGM wasn't yet approved.
I also found the PALS for the BOB ICB; emailed and left a phone message this morning, which got me a phone call back from someone who clearly understood the internal machinations of BOB ICB and their approvals process.
So I'm not holding my breath. But I've quoted NG 17 to each organisation and mentioned my MP as well as local media and the formal complaints process to NHS England. Now I wait to see if anyone blinks! It's taken about 3 hrs this morning to make this break-in to various otherwise abstract and almost unreachable organisations who are to all intents and purposes not just uncontactable, but unaccountable. [I'm working on preparing my email to my MP!]

Has anyone done this I've been trying but CCG haven't been very helpful.

Over 99 % of CCGs in England have been amalgamated into just 42 Integrated Care Boards (ICBs). This is part of an NHS reorganisation initiative going back 2-3 yrs, preceding COVID and our merger became live on 1 July this year. So it's highly possible that previous contact details for your CCG are now invalid. The other bit of this reorganisation and built in to the 5 year GP contracts (ours was renewed in 2019) is the creation of Primary Care Networks (PCNs). So now, when our GP Surgery has any sort of query or anomaly with medications, they pass that to the clinical support team which has a pharmaceutical department; they wrestle with the medication query. Our local PCN covers 5 local Practices (which now work with a fair degree of collaboration) and has a useful explaining website but no contact info; just their postal address.

Our ICB went live on 1 July, after over 12 months of lead time for preparation (according to their website) and despite this seem bogged down in not knowing what they are doing!

If you know the name of your former CCG do a Google search to find out what the title is of the replacing ICB. Ours is all but uncontactable directly, but has a Patient Liaison Service (PALS) and you might find a link to your ICB's PALS on your ICB's website, or do a further search. All ICBs will have a PALS, it's NHS policy and their role is to act as an interface between Patients and Boards (or Hospital Trusts). Then try sending an email to that PALS. I suggest you refer to NICE Guidance NG17 and point out that NICE particularly expanded the range of CGMs to be available because it was cost neutral and improved the options that needed to be available to T1s, ie alternatives to Libre 2. My email Brough a phone call back, the same day; I'm waiting for further answers.

The holdup for me is because our newish ICB has not yet given funding approval for Dexcom One in accord with NG17. So no prescribing by GPs in the new ICB. I'm pursuing the argument that since this is cost neutral there should be no reason for not implementing the recommendations of NG17 for those patients already in receipt of Libre 2; the ICB might need to address the seemingly wider cost increase as CGM prescribing is broadened, which is outside the scope of a simple change of meds - but shouldn't delay my requirement.

In truth I think our new ICB and the underlying Integrated Care System (ICS) is just disorganised and incompetent. Their new website is not being kept up to date, is not particularly informative and their most recent top level Board meeting from October doesn't have the minutes from that meeting available, so I can't see who attended or what sort of things they are grappling with, never mind finding out what the 'structure' is of the ICS. I know from a phone call that there is a Resources Centre, which doesn't have Dexcom One approved - but don't know if the Resources Centre is low down or high up the overall organisation of our ICS.

If your Google searches for your ICB lack information, try Googling your (***) ICS rather than ICB. Our ICB embraces Bucks, Oxford and Berkshire West; searches yield limited info for Oxford & Berkshire West discrete ICS; but nothing for Bucks! Good luck, hope this makes your wading in treacle a little easier.

 

[BadaBing]

Has anyone done this I've been trying but CCG haven't been very helpful.

If you believe you are eligible, and you really, really want the Dexcom One and your integrated care board is being..........difficult, may I suggest you contact Professor Partha Kar, who is the NHS England co-lead for diabetes and diabetes technology.

Professor Kar has been responsible for getting the NICE guidelines changed and he is on a mission to make reluctant ICBs provide the tech that diabetic patients are entitled to as part of what he describes as normal "standard of care."

ICBs now need to be very careful. They've had seven months to "get with the programme."

I understand the Dexcom One is on the national prescription formulary and is available for prescription (the NHS must be the only healthcare system in the world that has multiple layers of "systens" that a medical device or drug needs to be placed on before it can - theoretically - be prescribed, the sole purpose of which is so it can fob taxpayers off about prescribing because the product isn't on a particular system. Utter #*#*#*#s!).

Logically, there is no reason why the Dexcom One cannot be prescribed. Now! If your ICB allows currently patients to be prescribed the Freestyle Libre 2, the cost over the course of a year of the Dexcom One is as near as dammit the same as the Libre 2 (Profesdor Kar calls it "cost neutral").

If I understand what Professor Kar has said on Twitter so far correctly, if you are eligible for the Dexcom One, there is nothing to stop your GP picking up their prescribing pad right now and prescribing it for you. Similarly your diabetes consultant.

The NHS is scheduled to receive £184 billion this coming financial year (assuming the upcoming autumn statement doesn't scupper that). If you've paid taxes some of that is money you've paid into the system.

Don't let gatekeeping clinicians and middle-managers (most of whom are extremely poor "penny wise, pound foolish" accountants) stop you getting what you need.

If you get a major complication that might have been mitigated by better control of your glucose by having the Dexcom One, the NHS will spend significantly more money dealing with the aftermath of treating that complication.

 

[barrym]

@BadaBing, I'm totally confused by all this. I have checked what I think is the National Formulary and there is no sign of Libre 3 which is my preferred next device. I have read quoted posts from Prof Kar, and assumed I'd find it there, but unfortunately not. So my fire-power for local arguments is greatly diminished I fear.

I know you are just the messenger, but can you clarify what I am and should be looking at?

Thx

 

[BadaBing]

@BadaBing, I'm totally confused by all this. I have checked what I think is the National Formulary and there is no sign of Libre 3 which is my preferred next device. I have read quoted posts from Prof Kar, and assumed I'd find it there, but unfortunately not. So my fire-power for local arguments is greatly diminished I fear.

I know you are just the messenger, but can you clarify what I am and should be looking at?

Thx

Good morning @barrym

I didn't refer to the Libre 3 in my response to @steveo.

I referred to the Freestyle Libre 2 only, which has been available for all GPs to prescribe for at least the last 2 years.

As for the Freestyle Libre 3, it is quite clear the Libre 3 is - indefinitely - not available for GPs to prescribe because of the arrangement Abbott have made with the NHS.

The Freestyle Libre 3 ought to be more widely available in the UK. But it just isn't.

Clearly the NHS see the Libre 3 as integral to providing automated insulin delivery systems/hybrid closed loops/insulin pumps, etc.

My current understanding is that, at the moment, anyone who wants the Freestyle Libre 3 will basically have to prove their diabetes needs are "complex" enough to justify a consultant recommending the Libre 3.

As I mentioned in another thread, in Greater London that means one must prove either (1) "problematic hypoglycaemia" (and who is going to do that and risk the DVLA potentially rescinding one's driver's licence?); or (2) that one is pregnant and has "problematic hypoglycaemia"; or (3) that one is using (or will in the near future use) an insulin pump/automated insulin delivery system/hybrid closed loop system that the Libre 3 can (or will in the near future) communicate with to provide insulin; and/or (4) one can prove it is necessary for a family member or friend or carer to have access to one's glucose data remotely so that the family member/friend/carer can assist one, or make on one's behalf, treatment decisions based on Libre 3 data.

My understanding is that Abbott aren't happy with the current arrangement they have with the NHS. I understand the Freestyle Libre 2 is significantly more expensive to make than the Libre 3, and obviously Abbott would prefer everyone to be using the Libre 3 rather than the Libre 2.

In Germany (where the Libre 3 was launched initially), I understand the Libre 2 is being discontinued, and everyone in Germany on the Libre 2 will be moved to the Libre 3.

I understand discontinuance of the Libre 2, and its replacement with the Libre 3 in other European countries where the Libre 3 is more readily available than it is here in the UK, is also likely to happen in the near-medium term.

If my understanding is correct, for commercial reasons Abbott will want to change its current arrangement with the NHS as soon as practicable because it is costing Abbott money.

If Abbott's lawyers are worth their salt, this arrangement will be short term so they can reduce their costs and increase UK sales of the Libre 3.

For now, anyone (like me) who wants the Libre 3, but who doesn't meet the NHS's challenging criteria, will just have to wait I'm afraid.

Or you'll need to live in a local health authority area with a diabetes clinical team determined to give their diabetic patients the tech that best suits their patients' actual, practical day-to-day needs.

At the moment, for anyone who wants to get a real time continuous glucose monitor on prescription in England, the choice is limited to the (1) Dexcom One, (2) the GlucoRX Aidex or (3) the GlucoMen Day products.

And your local integrated care board might not offer you a choice of all three products.

 

[barrym]

Hi @BadaBing

I realise the thread wasn't about L3, but I have been chasing my consultant for it and the process described above seemed relevant. . Seeing Prof Kar's post I thought I was on to a winner. Unless I'm imagining it I'm sure I've seen press releases saying it has been approved too.

No wonder the NHS is short of cash with all these layers of treacle.

Regarding the three CGMs they have available, my consultant was not very keen on any. I assume they were valid reasons. I don't remember which argument applied to which, but it was regarding the complexity with sensors and transmitters, cost, wastage, lack of good data oversight. And probably some others.

I'm currently using Juggluco in addition to LibreLink which gives me the CGM so I'm functionally sorted, but would like the simplicity of ONE app.

Now all I need is a new Echo Plus pen, that seems to be down the same 'rabbit hole'. <sigh>

 

[BadaBing]

Hi @BadaBing

I realise the thread wasn't about L3, but I have been chasing my consultant for it and the process described above seemed relevant. . Seeing Prof Kar's post I thought I was on to a winner. Unless I'm imagining it I'm sure I've seen press releases saying it has been approved too.

No wonder the NHS is short of cash with all these layers of treacle.

Regarding the three CGMs they have available, my consultant was not very keen on any. I assume they were valid reasons. I don't remember which argument applied to which, but it was regarding the complexity with sensors and transmitters, cost, wastage, lack of good data oversight. And probably some others.

I'm currently using Juggluco in addition to LibreLink which gives me the CGM so I'm functionally sorted, but would like the simplicity of ONE app.

Now all I need is a new Echo Plus pen, that seems to be down the same 'rabbit hole'. <sigh>

Hello @barrym

I feel your pain. Believe me, I do.

I've been following Professor Kar's tweets fairly closely. As far as I'm aware he has not made any statement that suggests the Libre 3 will be available on prescription in England anytime soon.

The next major announcement from Professor Kar/NHS England/NICE looks set to be the introduction of, or expansion of access to, hybrid closed loops/automated insulin delivery systems/insulin pumps, of which the Libre 3 will be an important component part.

I've mentioned the real time cgm choices offered at the moment on prescription in England. I say again: Professor Kar says the three new options available are supposed to be "cost neutral" when compared to the Libre 2.

As far as Professor Kar is concerned cost should not be raised as an reason for not prescribing one of the three new real time cgms.

I'm sure some diabetes clinicians won't want to have to learn and keep abreast of three (four if you count Abbott's Libreview) different data platforms on which patients' glucose data is recorded. Some clinicians might try to steer patients towards staying on their clinician's favourite data platform.

I know if it were me it would drive me potty having to keep up-to-date with three/four data platforms which pretty much do the same thing but which have significantly different user interfaces.

But theoretically patients are supposed to be given a choice of real time cgm.

No one wants to use unauthorised third party devices or bits of software to turn their flash glucose monitor into a real time cgm. My understanding is none of these third party devices/apps work perfectly all of the time. If you buy a new smartphone (or new smartwatch) they might not work at all. As soon as one's smartphone/smartwatch gets a software update, all too frequently the third party devices/apps one has used to turn a flashgm into a cgm may stop working properly, or at all. Or it may need to be reconfigured to work again.

I admire those who have the patience to set them up and use them, but I lack that patience. And because these third party devices and apps are unauthorised there is no guarantee they will work perfectly every single time.

But for right now, if you want one of the three new real time cgms available on prescription in England, and you think you are being fobbed off by your consultant, I can only suggest you consider getting Professor Kar involved.

 

[barrym]

Although I spent a career as a reasonably techy nerd, I did find Juggluco very easy to set up and although it has a lot of capability that duplicates LibreLink, I ignore that and just use the NOW level, and cast a glance over the ragged un- smoothed graph and an overlayed 'flash' graph which is quite fascinating to see what Abbott do with the raw numbers.

This whole episode of chasing L3 was kicked off by a problem with the app being kicked off of Play Store due to some infringment of Google AI rules, so I do concur with all your reservations of 3rd party apps/hardware. You can shout at Abbott, but try chasing an individual Dutch techy!!! That said, to date he has responded to the few mails I have sent within an hour or so. So far anyway.

You pays yer money.......

 

[BadaBing]

Although I spent a career as a reasonably techy nerd, I did find Juggluco very easy to set up and although it has a lot of capability that duplicates LibreLink, I ignore that and just use the NOW level, and cast a glance over the ragged un- smoothed graph and an overlayed 'flash' graph which is quite fascinating to see what Abbott do with the raw numbers.

This whole episode of chasing L3 was kicked off by a problem with the app being kicked off of Play Store due to some infringment of Google AI rules, so I do concur with all your reservations of 3rd party apps/hardware. You can shout at Abbott, but try chasing an individual Dutch techy!!! That said, to date he has responded to the few mails I have sent within an hour or so. So far anyway.

You pays yer money.......

Full disclosure. I've spent much of the last twenty plus years protecting and stopping others infringing the intellectual property rights of cutting edge inventions, including drugs and medical devices.

But I am diabetic, so I'm really conflicted about these third party devices and apps.

On the one hand Abbott have no doubt spent huge sums in R&D, clinical trials, obtaining regulatory approvals for their products from the MHRA, EMA, etc. They deserve to recoup that investment.

They shouldn't have to spend substantial sums policing their proprietary rights in their products to stop third party products (none of which it should be remembered have been submitted to a medical products regulator for assessment and formal regulatory approval) that Abbott aren't responsible for and that they haven't tested to ensure those third party products work safely with their flashgms/cgms and don't potentially harm anyone.

But it would be good if Abbott could make their real time cgm much more available in the UK to those that want it.

And if they could make glucose readings from their sensors/LibreLink, etc accessible - without needing a third party device/app - directly to as many commercially available smartwatches. Abbott have been far too slow doing that (and I understand Dexcom are picking up customers as a result).

 

[barrym]

.....Abbott have been far too slow doing that (and I understand Dexcom are picking up customers as a result).

Thanks for that explanation.

I couldn't agree more, but 'the customer is king' generally.

When I realized how the alarms worked, ie the device sending a minute by minute 'actual' reading, and just discarding it if it wasn't required for the alarm warning, I felt completely unnacceptable. I emailed them, which they seem to encourage, suggesting that it could be displayed discretely and a very low cost, was totally ignored. That alone is pretty poor customer handling. I accept that this could be defended as saving a feature for a future commercial benefit but frankly that has to be handled better that this has been.

Ah well, on we go.....

 

[BadaBing]

Thanks for that explanation.

I couldn't agree more, but 'the customer is king' generally.

When I realized how the alarms worked, ie the device sending a minute by minute 'actual' reading, and just discarding it if it wasn't required for the alarm warning, I felt completely unnacceptable. I emailed them, which they seem to encourage, suggesting that it could be displayed discretely and a very low cost, was totally ignored. That alone is pretty poor customer handling. I accept that this could be defended as saving a feature for a future commercial benefit but frankly that has to be handled better that this has been.

Ah well, on we go....

I agree with you. I'm sure by the time you rang them they were already planning the Libre 3.

Although to be fair, slow, gradual improvements in product development is pretty much de rigeur amongst companies these days, especially the multinationals. One only has to look at the various iterations of the iPhone since it first came to market in 2007 to see that.

Step-change invention in product development is very few and far between. Historically from an intellectual property perspective, step-change invention tends to be linked to major events, such as a global pandemic, or war.

I know that from my own work.

But if it's any consolation, now that Dexcom's Dexcom One is available on prescription and to buy on Dexcom's UK website, I believe genuinely that Abbott's failure (or inability because of the contract they have with the NHS) to make readily available their own real time cgm is losing them customers to Dexcom. Daily.

If they want to keep their UK market share, Abbott will want to do something about that.

 

[everydayupsanddowns]

I realise the thread wasn't about L3, but I have been chasing my consultant for it and the process described above seemed relevant. . Seeing Prof Kar's post I thought I was on to a winner. Unless I'm imagining it I'm sure I've seen press releases saying it has been approved too.

Libre 3 is available on the NHS, but only in the same way that Dexcom G6 and some other rtCGM like Medtronic‘s G4 (or whatever number they are up to now!)

Which means you may need what used to be called an IFA (Individual Funding Arrangement) where your consultant negotiates with local health economy beancounters and successfully argues the case that this is something you need.

The odd thing about L3 is that it can’t be self-funded or purchased online like Dex/Medtronic can be. Whuch puts it in a bit of a cul-de-sac really, since the NHS is still fairly averse to offering CGM even where clear benefits can be shown.

I’m going to try this conversation when I have my next pump clinic (February?) as I have been self-funding Dexcom G6 for a while as it is the CGM that connects to my insulin pump. I was quite optimistic at one point, but I can feel that optimism draining away as the weeks pass!