Help getting libre/Dexcom for myself and mother-in-law

[KnittingGirl]

Hi. Sorry for the rant and questions but am confused and looking for help.



So my mother-in-law (80) had an appointment today with a diabetic consultant. First time in 15 years ish. She has been type 1 nearly 60 years. I went along as I’m also type 1 (had it 41yrs, I’m 43) as she mainly wanted to talk about going on either Libre or Dexcom. After 20 minutes of trying to get the consultant to discuss this, she said that we (both) would not get a Dexcom on the nhs, it would need to be self funded and wouldn’t really agree to MIL having the libre as she would need a smart phone. She has a smart phone, an iPad and a very up to date iMac. We explained this to the consultant who didn’t really believe us and then proceeded to walk out mumbling to herself.



So firstly, is there any funding available to get the Dexcom as I can’t afford the prices every month and not currently under any consultant..



Secondly is there another way my MIL can get the libre? Her GP won’t give it to her unless consultant agrees which we are not holding out much luck. And again the price is too high?



Thanks.

 

[EllieM]

Hi @KnittingGirl

That's a real shocker and definitely rant worthy in my opinion. All T1s in the UK are now supposed to get the libre or other cgm, as I understand it. But unfortunately getting all the individual health authorities on board with this is still a work in progress?

Sounds like the consultant refuses to believe that an 80 year old can use modern technology?

I'm going to leave it to the UK T1s to recommend a way round this (is there someone you can complain to about the consultant?)

As for funding the dexcom, I believe the dexcom one is the;same price as the libre, so you might be able to make a case for that to your consultant

So firstly, is there any funding available to get the Dexcom as I can’t afford the prices every month and not currently under any consultant..

Can you get referred to a consultant?

Lots of virtual hugs.

 

[oldgreymare]

Hi @KnittingGirl,

Totally agree with @EllieM that this is shocking and sounds obnoxiously ageist! Technically GPs are allowed to prescribe Libre 2 or Dexcom 1 without referral to a consultant. But if you and MIL aren't regularly attending specialist endocrinologist appointments, it is sadly not surprising your MIL didn't receive immediate support for a CGM prescription.

It is definitely true that most UK health authorities are not ready/capable to implement the latest NICE guideline on CGM prescribing.
Reasons (IMHO) -
1. Expense/fear of exceeding budget targets. The revised NICE guideline was only issued in August 2022, I doubt many authorities have had a chance to estimate and forecast what extra budget they would need, let alone be allocated, to implement the latest guidance for their area. January 2023 NHS tariff costs for L2 and D1 are about £900 per person per year. Only 'budget neutral' if substituted for a BG strips NHS prescription for at least 8+ strips/day.
2. Lack of sufficient specialist staff to train users and monitor progress/improvements due to CGM use. Pragmatically this takes extra staff training and much more time than a quick review of HbAc1, eyes, feet, etc.
3. NHS burnout - realistically pretty much all primary care (GP) services and specialist centres are massively overstretched at present.

But don't give up. I think your best bet is to develop your informed evidence as to why you believe using a CGM will improve your diabetic control (of course convenience, quality of life absolutely matter, but not a NHS prescribing argument unless your/your MIL's control is very poor). Are you MDI or pump users? How 'good' are your recent HbAc1s?

Also make sure you both understand in depth how CGM works and have grasped the basic statistics to interpret the "Time in Range" and BG fluctuation graphs. Definitely a major CGM benefit is detailed analysis of hypos - could be especially important for your MIL. Are you both hypo aware? Ever wake up with nighttime hypos?

Have you ever completed a DAFNE/Bertieonline course? I think this is often a pre-requisite to be considered for a CGM on the NHS. If a long time ago, perhaps do a new Bertieonline to help demonstrate that you both understand how your insulin works and the factors influencing dosing.

Have either of you done a trial of using a CGM - both L2 and D6 one month packages are available privately - again this could help you decide if it actually does what you hope for and help provide evidence that you know how use one.

Sorry this is so long! But I hope it gives you some ideas. Edited for grammer.

 

[Ladybird1]

Hi. So for the rant and questions but am confused and looking for help.



So my mother-in-law (80) had an appointment today with a diabetic consultant. First time in 15 years ish. She has been type 1 nearly 60 years. I went along as I’m also type 1 (had it 41yrs, I’m 43) as she mainly wanted to talk about going on either Libre or Dexcom. After 20 minutes of trying to get the consultant to discuss this, she said that we (both) would not get a Dexcom on the nhs, it would need to be self funded and wouldn’t really agree to MIL having the libre as she would need a smart phone. She has a smart phone, an iPad and a very up to date iMac. We explained this to the consultant who didn’t really believe us and then proceeded to walk out mumbling to herself.



So firstly, is there any funding available to get the Dexcom as I can’t afford the prices every month and not currently under any consultant..



Secondly is there another way my MIL can get the libre? Her GP won’t give it to her unless consultant agrees which we are not holding out much luck. And again the price is too high?



Thanks.

Hello, I'm having a similar problem. I've been on a 3 month trial (libre 2) no blood test after. Rang hospital and I've got another 3 month trial and hopefully a blood test after. I was under the impression that all T1's were to have the libre or some kind of sensor provided on the NHS

 

[oldgreymare]

Hello, I'm having a similar problem. I've been on a 3 month trial (libre 2) no blood test after. Rang hospital and I've got another 3 month trial and hopefully a blood test after. I was under the impression that all T1's were to have the libre or some kind of sensor provided on the NHS

Hi @Ladybird1,

I understand your frustration. The popular media has a lot to answer for, as it has created unrealistic expectation that the NHS will simply give a CGM to any Type 1 who asks for one. The revised CGM guidance has broadened the advice on prescribing CGMs as opposed to relying on fingerpricks, but still requires very much more clinical decision making than a patient simply asking to try out a CGM. Very analogous to a GP handing out antibiotics simply because a patient asked for them (would be negligent). A lot more criteria is involved, including assessment of potential mental health stress that can be caused from data overload, obsessional trend tracking, etc.

If you have already been granted a L2 on trial by the NHS, you are already one of the very lucky ones. Annoying that redoing your HbAc1 post this trial may have been missed, but I believe getting an additional 3 months prescription is a real silver lining. Make the most of it! I am under the care of probably the top hospital diabetes clinic in the whole of the UK, but even they screw up on ordering blood tests before clinical reviews. So definitely proactively contact the hospital 3-4 weeks before the end of your CGM trial extension in order to have bloods taken and recent results obtained before discussing with your diabetes care team. Do you automatically share your L2 readings with your care team? Even without a review have you seen improvements with your estimated HbAc1 readings from the Libre App data?

Do take a look at my comments in the post above to @KnittingGirl . In the meantime best of luck!

 

[becca59]

It is absolutely outrageous. As Partha Kar would say no ifs no buts or maybes. All type 1s are now eligible for a L2 or Dexcom 1. There should be no hoops to jump through. Unfortunately some CCGs are dragging their heels. He regularly prints maps showing who they are.
@KnittingGirl please contact Partha Kar on Twitter. Sign up especially if you are not on. Your story, especially re your 80 year old MIL would I am sure interest him enormously.

@parthaskar

 

[oldgreymare]

It is absolutely outrageous. As Partha Kar would say no ifs no buts or maybes. All type 1s are now eligible for a L2 or Dexcom 1. There should be no hoops to jump through. Unfortunately some CCGs are dragging their heels. He regularly prints maps showing who they are.
@KnittingGirl please contact Partha Kar on Twitter. Sign up especially if you are not on. Your story, especially re your 80 year old MIL would I am sure interest him enormously.

@parthaskar

Hi @becca59,

Sadly I think the more correct NHS status is that all type 1s are now eligible 'to be considered' for a L2 or Dexcom 1. There should be no are still hoops to jump through as the immediate NHS diabetic team must still assess that the patient is realistically likely to benefit from being prescribed a CGM. Still very much a work in progress and CGMs are NOT easy to use! A work in progress for both patients and practitioners.

 

[KnittingGirl]

Hi @KnittingGirl

That's a real shocker and definitely rant worthy in my opinion. All T1s in the UK are now supposed to get the libre or other cgm, as I understand it. But unfortunately getting all the individual health authorities on board with this is still a work in progress?

Sounds like the consultant refuses to believe that an 80 year old can use modern technology?

I'm going to leave it to the UK T1s to recommend a way round this (is there someone you can complain to about the consultant?)

As for funding the dexcom, I believe the dexcom one is the;same price as the libre, so you might be able to make a case for that to your consultant

Can you get referred to a consultant?

Lots of virtual hugs.

Thanks for the reply. Unfortunately this is the only consultant in our area so would have the same on too. I have put in a request today with my GP. Let you know how it goes.

 

[tim2000s]

I wrote this to describe how to get prescription CGM as a guide, because it worked for me. Give it a go.

How to get real time CGM on prescription in England. A brief approach… | Diabettech - Diabetes and Technology

***Updated*** There's a lot of discussion around the new rtCGMs being available on prescription, but local GPs saying that they aren't or telling you there's nothing they can do. Most people with diabetes have a reasonably good relationship with their GP, and therefore should be able to have a...

www.diabettech.com

 

[Still_Here]

It really bugs me to hear these stories. The consultant is supposed to take a holistic view to help you live a fulfilled life while managing your condition.


I would challenge the consultant to justify why they will not support you.

The cost argument is quickly dismissed as it costs around £5,000 per ED episode be that hypo or DKA. Therefore over a year if one ED attendance is prevented amongst 5 T1D's using Libre then it is a win for the NHS.

You and your mum are both keen to "improve your self management " of your condition. This is an NHS mantra, so why are they not supporting that.

The mobile phone is a red herring. Abbott provide a hand-held reader on request for L1 & L2.

Finally why are they not promoting NHS best practice, even if it is a 6 month trial to prove its worth.


If the rational discussion does not work then get on Twitter and use the power of Prof Partha Kar, a well respected diabetes consultant who is calling out those who display this type of behaviour.

PS I live in Northern Ireland and just told my consultant that I wanted them to prescribe the Libre at least 2 years before the NICE guidance was published. No argument, no issue, they made it happen. But it might have helped that I let it be known that I worked in health department.

 

[oldgreymare]

I wrote this to describe how to get prescription CGM as a guide, because it worked for me. Give it a go.

How to get real time CGM on prescription in England. A brief approach… | Diabettech - Diabetes and Technology

***Updated*** There's a lot of discussion around the new rtCGMs being available on prescription, but local GPs saying that they aren't or telling you there's nothing they can do. Most people with diabetes have a reasonably good relationship with their GP, and therefore should be able to have a...

www.diabettech.com

Hi @tim2000s,

Excellent guide! I had already unearthed most of this info but your write up is much better than any I could do.

Perhaps only comment is that the prescribing HCT still has some discretion to genuinely try to decide whether a new user is likely to benefit from a CGM...I'm sure it helps if an applicant's GP/diabetes team have had regular discussions on prescriptions, diet/exercise, mental stress, hypo fears, other health issues, etc - CGMs are a brilliant piece of kit, but far from a magic bullet for better HbAc1s, so HCT relationship will be a key factor to success in using.

 

[KnittingGirl]

Just to update everyone I had an interesting phone call yesterday off a diabetic nurse. They wouldn't speak to me about put my Mother In Law (even thou it was her appointment) on the Libre as she wasn't with me but I had also been referred for a Dexcom 1. However, they did say that there was a long waiting list for both and it could be over a year until we get either. My mother in Law has now gone off the idea and has given up. I am going to wait and see! Another year of finger testing after 41 years won't harm lol.

 

[becca59]

I will keep saying it. There is not a waiting list anymore. That is a ruse to put you off. As a matter of interest which health authority are you under?

 

[KnittingGirl]

HI. We are from Aneurin Bevan University Health Board. They said that they are moving everyone from Libre to dexcom which I thought was a bit odd. Might try my GP instead.

 

[zepherine]

Keep trying and don’t be fobbed off! Wishing you all the best...

 

[oldgreymare]

Definitely don't give up!

I note that you are under NHS Wales which is managed differently from NHS England, so my experience and suggestions may not exactly translate, but should have some relevance.

That said, I believe that your GP practice can directly prescribe either Libre2 or Dexcom1 CGMs to Type 1 diabetics. There are slight differences between these, both basically are very similar to use in practice. Perhaps the most important issue as a patient is to get used to interpreting your longer term trend graphs, especially 'time in range' TIR, 'time above range' TAR and 'time below range' TBR. The last is the biggest red flag issue for my endocrinologist, but something to agree with your own health team.

This is much broader NICE CGM prescribing criteria than existed prior to August 2022, and I believe this should have been implemented after 90 days i.e., by end November 2022, so well worth asking your GP in more detail why your health area believes that it is allowed to delay prescribing for a further 12 months? - budget?, supply chain?, staff training?, admin? (the last probably the saddest).

Pragmatically availability of the slightly fancier Libre3 and Dexcom G6 is currently restricted to consultant prescription and only for a highly restricted range of Type 1 users.

So maybe initially focus your lobbying efforts on getting a L2 or G1 to get off the ground with CGM experience. Keep trying and keep us updated. If you get it working, please try again for your MIL.

 

[becca59]

Wales-Ah that answers a lot. I couldn’t understand why you were having such difficulties. Rules and regulations will be different like Scotland and Northern Ireland.

 

[tim2000s]

Hi @tim2000s,

Excellent guide! I had already unearthed most of this info but your write up is much better than any I could do.

Perhaps only comment is that the prescribing HCT still has some discretion to genuinely try to decide whether a new user is likely to benefit from a CGM...I'm sure it helps if an applicant's GP/diabetes team have had regular discussions on prescriptions, diet/exercise, mental stress, hypo fears, other health issues, etc - CGMs are a brilliant piece of kit, but far from a magic bullet for better HbAc1s, so HCT relationship will be a key factor to success in using.

Actually, they don't. The guidance is very clear. It should be offered to all with type 1, and it's up to the type 1 to decide whether they want it, not, "it's up to the HCP to decide whether to offer it". It's obviously easier, the better your relationship with your GP, but if you ask them, the guidance is such that they can't choose not to on the basis of whether they think it will work for you.

 

[h884]

in my area (Grampian) the Health Board has not yet got systems in place for Dexcom One. It will happen just not sure when

 

[AndBreathe]

@KnittingGirl , you might find this link to be helpful. I don't doubt that @tim2000s (Hi Tim, long time no see!) link is equally informative, but sometimes if you are referring to things with an HCP, Diabetes UK holds more sway that other places.

Getting a free CGM, flash glucose monitor (Freestyle Libre) or insulin pump on the NHS – who should qualify?

If you live in England, Wales, or Scotland, see the latest guidelines on whether you — or someone you’re supporting— should be eligible for a flash glucose monitor (Freestyle Libre), continuous glucose monitor (CGM) or insulin pump to help manage diabetes. If you live in Northern Ireland, you’ll...

www.diabetes.org.uk

Fingers crossed you can get things sorted out.