Pump and CGM funding

ALGO

Newbie
Messages
2
Type of diabetes
Type 1
Hi

I've had an Animas pump for nearly 6 months (it took me 12 months to get it) and whilst some aspects are easier than the insulin pens, I'm still finding control a challenge.
I do not have a regular, structured lifestyle pattern and would really like to know what my glucose levels are all the time. But I've been told that if I want to use the CGM functionality on my pump I will have to pay for it myself - something I cannot currently afford.
Has anyone been successful in persuading their CCG or trust to pay for CGM?
What is the point in our NHS paying £3000+ for a pump, plus all the consumable costs, when we are only using 50% of the pump technology. Surely a preventative approach would benefit the NHS in Diabetic Unit costs and associated complications.

Apologies for the grumbles, but I would really like better control and live better :)
 

paulliljeros

Well-Known Member
Messages
417
Type of diabetes
Other
Treatment type
Other
What is the point in our NHS paying £3000+ for a pump, plus all the consumable costs, when we are only using 50% of the pump technology.
I think the fact we are getting £3000+ for free is unbelievable. Excellent control is achievable on a pump without CGM, but requires the user to undertake BG tests. Once you are confident your basal rates are correct (by doing a basal test), then you can ensure your I:C ratio and Corr factors are also correct (by BG testing) and then it requires tests before meals, and spot checks at other times. I'm afraid a CGM is not a pre-requisite for successful pumping, it just makes it easier, and unfortunately, whilst everyone on here would love to be given it free, our NHS is on its knees and just can't afford it. I am just grateful I get insulin and BG strips for free ... the fact I get a pump etc as well is the Willy Wonka ticket for me! I'm sorry to be so blunt, but there are plenty of threads on this subject if you are interested - just search for "petition" ;)
 

glavesr

Well-Known Member
Messages
75
Type of diabetes
Type 1
Most NHS clinics are trying to get people to use the libre over the cgm systems plus it is cheaper to self fund (I apologise if I'm wrong but the limited knowledge I have on cgm
From what I've seen they are pretty much the same thing just with the libre you have to scan every 8 hours
 

ALGO

Newbie
Messages
2
Type of diabetes
Type 1
Paul - your profile looks like a perfect, dedicated diabetic, with a great track record.
I already do a lot of BG testing and want to make any part of diabetes life easier (for me and the NHS).
I know the funding issues in the NHS, I've worked it, just want to make sure if we are paying for a service, it is value for money. Thanks for the petition hint.
 

paulliljeros

Well-Known Member
Messages
417
Type of diabetes
Other
Treatment type
Other
Paul - your profile looks like a perfect, dedicated diabetic, with a great track record.
Thank you, but you can't see the whole story. Sadly I spent my first 28 years of diabetes with absolutely terrible control and am paying for it now with stage 5 CKD. I sorted myself out by buying a dexcom, and that was the turning point. I am fortunate, in that I have been able to make life choices that enable me to afford it, and I sympathise with those that cannot, because life is infinitely easier for me with it. Sadly, I personally don't believe we see a true representation of the benefits of CGM, as I suspect almost everyone that uses it in the UK pays for it themselves, and therefore takes it incredibly seriously, ekes every last minute out of every sensor, and micro-analyses every trend. Had I been given CGM for free 5+ years ago, it would have, in my personal situation, been a complete waste of money as I wouldn't have used it appropriately. For this reason, how are the NHS meant to ensure only those that will make the best use of the technology be given it, and use it properly - we already see how badly the CCGs work when it comes to getting pumps. How many people get medication on prescription, and then waste it by not completing the course?
In an ideal world you are absolutely right, it would be given on the NHS, but sadly, I honestly don't think it will be cost effective when BG tests are a cheaper alternative. I would also say that CGM isn't really a replacement for BG tests, it just puts them into context, telling you where you've been, and where you're going.
 
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Angusc

Well-Known Member
Messages
115
Type of diabetes
Type 1
Treatment type
Pump
you can get CGM funding if you can prove it's cheaper than ending up in hospital with hypo's and hyper's which is about 5+ per year with bad hypo's with little warning. As 5 years ago my DSN and me estimated that it cost the nhs at least 400ukp for a 999 call out and 600ukp per day in hospital which is probably a lot more now and occupied a bed for 5-8 days per trip to AE so you need to update the figures and cost out how much as I've not been in hospital once since getting the pump and CGM so you can argue that it's cheaper and a much better QL with the pump
 
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tim2000s

Expert
Retired Moderator
Messages
8,934
Type of diabetes
Type 1
Treatment type
Other
You'll get very little assistance if you focus on QoL for an attempt to get CGM on the NHS. It's really all about cost. The NHS has to cost CGM at the recommended lifespan of the components, so this means that you are talking around £2,500 annually (which varies by system, but not much).

The other thing is that now, if you are basing it on hypos, you are unlikely to be given a choice of CGM. The most likely response from the NHS will be the 640G with Enlites due to SmartGuard and Predictive low glucose suspend, which has been proven to be effective for many (if not all).

So while it's possible, be aware that what you ask for and how you ask for it will affect the response.
 

Chas C

Well-Known Member
Messages
1,044
Type of diabetes
Type 1
Treatment type
Pump
You need to take care how you put your case, if your having controllable low BG's but you choose to tell your consultant that they are not controllable (in an attempt to gain access to funded CGM) then your highly likely to lose any vehicle based licences that you might have (e.g. car etc).
 

GrantGam

Well-Known Member
Messages
2,603
Type of diabetes
Type 1
Treatment type
Insulin
You need to take care how you put your case, if your having controllable low BG's but you choose to tell your consultant that they are not controllable (in an attempt to gain access to funded CGM) then your highly likely to lose any vehicle based licences that you might have (e.g. car etc).
Well said @Chas C. Everything comes at a price. Bye bye driving license, hello CGM. It's a no brainer what I'd choose to be honest.

@ALGO, I personally know pumpers on here (with the same pump ironically) and no CGM who are achieving HbA1c's <40mmol/mol. Now, I fully appreciate that every T1D's condition demands more/less than the next persons, and yours might be more awkward to manage, but my point is that a CGM will not give you good control. At best it will help, but for the most part - it's important to know how to manage your condition as effectively as possible, regardless of what tech is used. All the CGM does is tell you a number, which way it's going and where it's been. It's not a magic bullet.

I also agree with @paulliljeros, our NHS is in no fit state to start handing out CGM's - and I wouldn't want it to in a month of Sundays.
 
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Chas C

Well-Known Member
Messages
1,044
Type of diabetes
Type 1
Treatment type
Pump
You can tightly control your BG's if you have stable diabetes and your prepared to put the effort in, I've done it myself but its very hard work and draining.

With a CGM you can suger surf, managing your diabetes and using the CGM to help you adjust your insulin, this is what I do and its a lot easier than manually managing.

I imagine a CGM would help those with unstable diabetes and it definitely helps me on those odd days when whatever I do my diabetes just will not play to the rules :)

In whatever case you still need to manage what your doing as @GrantGam states is not a magic bullet - that takes away this need.