CGM - anyone got one on NHS?

[crashinduction]

I've been put forward for a CGM on the NHS after trialling one for a month - but this was 8 months ago. I've heard nothing yet and presume no news is bad news.
It was AMAZING and made a huge difference to my BM's. After a week, my BM's ran between 5 and 7 and had only a small postprandial rise. I felt like a non-diabetic!
They are pricey though and I would struggle to fund the £1500+ a year they cost. I work in the NHS and can see that if you reduce this figure by the price of the BM strips you'd save plus figure in the cost of reducing complications, it would seem a bargain price. (seriously)

Has anyone been lucky enough to get theirs funded and any tips?

 

[Flowerpot]

CGM can occasionally be funded by your CCG although it isn't common and doesn't have NICE guidelines so is dealt with on a case by case basis. The people who are funded at my clinic have lost hypo awareness and I think the majority have also been referred for an islet cell/ pancreas transplant.

It is exceedingly lucky to be allotted precious NHS finance for CGM but it is also probably pretty unlucky to have lost hypo awareness and have to rely on CGM. If you hold a driving licence and have lost hypo awareness it is very probable that you will have your licence revoked so unfortunately the main criteria used for supporting a funding request does have serious implications.

Have you contacted the consultant who supported your request for funding to see if a decision has been made? It is fantastic technology and it is cruel that the price is so prohibitive as it gives dramatic improvements in blood sugar control which in turn help prevent serious complications . Have you looked into the Abbotts Libre which works out slightly less expensive than CGM ?

 

[Spiker]

Given that most CGMs require calibration at least twice a day with a blood test, and before any injection or treatment, the cost argument doesn't really fly alas. Not at today's prices. In practice I find 4 calibrations a day are needed to keep my Dexcom CGM on track (others get by with less though).

The Libre was claimed not to need calibration with a regular blood tester but this has turned out not to be the case in practice. It is also more expensive than the Dexcom CGM, due to the (unofficial) ability to reuse Dexcom sensors, but the Libre is cheaper to run than other CGMs.

 

[CarbsRok]

I've been put forward for a CGM on the NHS after trialling one for a month - but this was 8 months ago. I've heard nothing yet and presume no news is bad news.
It was AMAZING and made a huge difference to my BM's. After a week, my BM's ran between 5 and 7 and had only a small postprandial rise. I felt like a non-diabetic!
They are pricey though and I would struggle to fund the £1500+ a year they cost. I work in the NHS and can see that if you reduce this figure by the price of the BM strips you'd save plus figure in the cost of reducing complications, it would seem a bargain price. (seriously)

Has anyone been lucky enough to get theirs funded and any tips?

My GP applied for funding and we were both told no I couldn't have funding because no one had funding so it wasn't fair on anyone else.
GP even went as far as to tell them I had Addison's disease so had to work twice as hard as anyone else. The reply.......... there are loads of diabetics who use steroids! Obviously the so called medical panel have no idea what Addison's is or the effect it has on blood sugars.

 

[HaroldC]

I'm looking into self-funding my CGM. At the moment I use the Libre, it's really handy and appears to be cheaper than the Dexcom.
Libre costs me £101 every 4 weeks.
Dexcom quote me £257 every 4 weeks.
Now the Libre is near-field with their special reader and uncalibratable. Dexcom is Bluetooth - and has been hacked (which is good news for us engineering types
So, it appears Dexcom is over twice the price, BUT I hear stories that Dexcom sensors can be made to work for 10 days. This would reduce the monthly cost to £175.
What experience do folk here have of extending sensor life, (or possibly even getting some assistance funding somehow, which is probably impossible, but an option to consider)
Your news and views would be greatly appreciated!

 

[Spiker]

Dexcom sensors can be stretched for much more than 10 days. 3 or even 4 weeks is feasible.

 

[crashinduction]

I had a trial last year of a Dexcom G4 and managed to get 3.5 weeks out of a sensor. That was while I was on holiday, in the pool every day too. I just kept restarting it at the end of every week until it eventually fell off. I felt safe, in control, plus able to pre-empt hypos and deal with hypers much more rapidly. It also taught me to bolus early for big carb loads and warned me of **** absorption from poor cannula sites.
I've been doing some research over the last few days and as I have an Animas Vibe, Animas will sell sensors to me for £187 ish for 4, whereas AT charges £250. I'm not sure what Animas do the transmitter for, but AT charge £325. I can use my pump to receive the data.
Being (very) optimistic, if a transmitter lasts 12 months and I can squeeze 3 weeks out of each sensor, it might "only" cost £1,140 per year or £95 per month.

I've seen some very mixed reviews about the Libre and although I've no actual experience of them, from a scientific PoV, I think that the most accurate monitor would be the only one I'd consider.
I know the Dexcom CGM's are really good and I'm torturing myself about whether my health, morbidity and longevity is worth £3 ish a day.
It probably is.

 

[HaroldC]

I've been using the Libre for the last 4 months. It's great to be able to check up your glucose and see how it's flowing up or down. Abbot have nailed the sensor life to EXACTLY 14 days. It's using near-field to pick up data from the sensor, it ONLY works on your outer-arm (so it clags up a cannula site) and it cannot be calibrated.
That said, I have found it useful. Now, if I can buy 4x G4 sensors for £187 and eake them out to 13 days each, then I'll be quids-in on G4. But, I WILL have a platform which is Bluetooth compatible. Having a Bluetooth compatible Roche pump could mean a slight possibility of integrating the control of each into a single Bluetooth android app. (yeah big dream, but, hey I might as well start somewhere). I know there are a few folk who have hacked the G4 Bluetooth protocol. I haven't found anyone who's hacked the Roche protocol, but a few weeks working with my pump and a passive protocol analyser running on Linux should find something.
There are, of course many more exciting things which can be done once you've discovered the two protocols and integrated them in another processing platform you always carry on you... like an android phone

 

[crashinduction]

Harlod - you're obviously a bit more IT savvy than I am! I love the idea of creating your own artificial pancreas. I'd chop my leg off for one!!
I have heard (but can't remember where) of someone who hacked their kids pump/CGM somehow and was able to turn the pump off remotely when they were hypo. I seem to recall it was via the kids smartphone - but it did sound a bit urban mythy.
Let us all know if you manage to achieve your hacking dreams!

 

[HaroldC]

Tech is all about splitting design problems into small manageable steps. This one is about getting and using CGM (which has its own benefits anyway). Another step is intercepting the Bluetooth protocol for my Roche pump (which is handy as it could be used as a remote control on a mobile) although that in itself has a serious price, the flow of dietary information and insulin-on-board information will now be in your phone, and not in the controller.
I've seen the same stories about other folk doing similar. As a power-supply designer I have to design compensation control networks in my day-job. It strikes me as not being terribly different to designing a blood-glucose compensator for my body, but as I'm doing it, I'm not constrained by the spectre of lawyers exploiting health & safety lawsuits.
Perhaps we should start a GNU project for this piece of software on Sourceforge.net?

 

[Spiker]

@HaroldC makes a great point. If we could break out of the quicksand of FDA approval and lawsuits, we, doing it for ourselves, could rapidly advance CGM and the "bionic pancreas". Because the hardware already exists, it's just the algorithms. For the FDA an algorithm is a medical device that needs years of testing for every little change. Community algorithms could evolve massively faster. Though we would literally be trusting each other with our lives.

 

[Emma s]

Hi, I'm new here. I had CGM on the NHS approved after a 18 month battle. I used it for 3 months then they pulled the funding as my hospital trust lost its commission to provide care and the new trust wouldn't fund it.

 

[HaroldC]

But, Spiker, we already trust ourselves to vagaries of judging what insulin we need. Sometimes overdosing sometimes underdosing. The difference is that usually we have only ourselves to blame. Me, personally, I'm happy to blame an algorithm I create and run in a phone instead of an algorithm I create and run in my head. This kind of project is only suitable for people who understand and are prepared to accept this. As a tinkerer, it'll be a bundle of fun of the "big names" haven't hidden to data too hard in their comms protocols.

 

[HaroldC]

GGC is a Sourceforge project to open up diabetes management. Anyone of a technical inclination can help the folk there on making stuff like this.

 

[DunePlodder]

The current Dexcom transmitter is not Bluetooth as far as I understand. The Dexdrip hacking project is all about converting the radio (2.4GHz?) output to Bluetooth which can then be received by a mobile phone.

Note that the Dexcom Share receiver which is out now in the USA will forward the data to a phone via Bluetooth. The next version, G5, is expected to transmit Bluetooth directly from the transmitter.

In the meantime this website makes interesting reading regarding the Dexdrip project:
http://circles-of-blue.winchcombe.o...exdrip-test-results-vs-dexcoms-505-algorithm/

I also saw another page with more comparing the Dexcom receiver graphs & Dexdrip, but I can't find it right now. There was an interesting graph for the 2 hours as a sensor is restarted. I'll keep looking..

 

[tim2000s]

The G5 is the breakthrough in this space. That's what will drive a dramatic uptick in usage.

 

[HaroldC]

Just called Animas, they won't supply CGM. "Only available for those who use our Vibe pump". I haggled with them for 10 minutes over it and they were quite adamant that CGM was unavailable and there were no plans to supply it, to support DSNs, or to help any T1 user have it.
Shame that.

 

[DunePlodder]

Just called Animas, they won't supply CGM. "Only available for those who use our Vibe pump". I haggled with them for 10 minutes over it and they were quite adamant that CGM was unavailable and there were no plans to supply it, to support DSNs, or to help any T1 user have it.
Shame that.

They used to. I presume Advanced Therapeutics weren't too happy about it.

 

[HaroldC]

Well, it's the kind of healthcare stitch-up you get used to these days. Shame as it's £2000/yr they won't be getting from me. It also has an impact on the way you look at "which pump will I choose for the next 5 years?" This is the second disappointment I've had with Animas, in fact they appear to me rather oversold. When you actually ask them for something, they can't come up with the goods.

 

[iHs]

@HaroldC

As a pump, the Vibe is fairly good. The downside to it, is the lcd screen display outside in sunny weather which isnt very good. I had to increase the contrast setting up to the maximum and also get longer tubes so that I could see the display by holding the pump just below waist level tilted slightly and turn my back to the sun so that my body provided the shade. My main reason for switching to the Vibe from the Combo was to use Dexcom cgm but dont think the screen display on the Vibe will be any good to see what my glucose levels are doing in bright daylight. Infusion sets are good most of the time. The Inset 30 knocks spots of the other 30 degree angle sets and literally fires in to the skin quickly and more or less painless. The introducer needle is slightly thinner and sharper than the Tenderlink.

Re the other pumps......the Accu chek Insight no longer uses luer tubes, instead the tubes connect to the pump using some black connection thing. Medtronic have always used their own design connection tubes and so its only Animas that use Luer. This makes it a bit impossible to use other brands of sets, although Animas sell an adaptor for the Medtronic.

Although Animas UK cannot offer any technical help for the Vibe, Animas USA can, and the call is free using the 0800 number.