i can't see a CGM section,so....

[jonesy]

i like the idea of CGM. how do you go about getting a monitor?
do you need a prescription or can you just buy them.

i really liked the look of the Seven Plus, but i see it is only available in the usa.

educate me please people.

jonesy

 

[kegstore]

The kit's not cheap and the sensors are not normally funded by the NHS, other than in exceptional circumstances. I can tell you about my system:

Pump: £3000
CGM transmitter: £800
CGM sensor: £40

When I tell you that each sensor officially lasts only 3 days, it starts to become very expensive very quickly. In practice, sensors can be made to last much longer - I get a minimum of 6 days out of mine, and I've heard stories of up to 14 days.

One of the reasons they're not routinely funded is their efficacy. As they don't measure actual blood glucose, they're not completely accurate and the data sent to the pump can be up to 20 minutes out of date. They don't replace normal meter testing, and in many cases people find they actually test more with the system than without.

Some PCTs will loan systems to diabetics for a few weeks at a time, in order to identify and address a particular issue in a blood glucose pattern. But routine funding is rare - out of 80 pump users in the Bristol area I'm the only one.

I wouldn't be without mine, but I have zero hypo awareness and had some fairly spectacular episodes until my application was eventually approved. The system doesn't catch every hypo with me, but the number has been significantly reduced.

 

[jonesy]

thanks kegstore.....they boast 'real time' results on some of the websites, but i bow to your greater knowledge for sure.

the cost isn't an issue, but i don't know if they will just sell to me without a prescription. although, if i'm not after funding, surely the doctor would approve it anyway right?

 

[kegstore]

steady on there, I only know about my system! But I can tell you that Medtronic call their standalone system (ie without a pump) Guardian Real Time, and it only measures glucose levels in interstitial fluid not blood, although does transmit results every few minutes which can be read in real time.

I'm not certain what the procedure is for self-funding, have a chat with your son's consultant, or maybe just contact a few of these companies directly?

All the best, Jo

 

[iHs]

Hi

I'm sure loads of us who are at least insulin dependent would jump through hoops in order to get a continuous glucose monitoring device.

Sadly they are extremely expensive and very few PCT's will agree to fund them although that might change over the next few years (let's hope ).

Myself, I am ever hopeful that a watch like device eventually makes it to market. The Cygnus Glucowatch did become available in 2002 (I think ?) but did not sell all that well because of bad skin irritation and also it was not very reliable. But the device was and still is, a step in the right direction. There should according to this link be some more devices in the pipeline http://www.glucosewatch.co.uk/. So try to hang fire for a while and wait and see what happens.

 

[Alzibiff]

Hello - my first post here.
I have had type 1 for 42 years and following a DAFNE course earlier this year was "approved" for pump use .... and once I had it, immediately started to badger for a trial of a CGM system.

A couple of weeks ago, I got to try it out and can only report good things - fantastic - although as said, readings are a wee bit "out" compared to finger prick tests. However the system DOES provide information on BG trends which is really helpful when it comes to adjusting basal rates and boluses. Once I had used up the two sensors which I had been given, I felt totally lost! I have a pump which can take advantage of CGM but no way of using it - a bit like having a car but only using first gear. So the journey begins - I am trying to make a case for funding to use CGM purely on the basis that it will make full use of the investment my Trust has made in pump technology and on the understanding that this really is the way forward for optimum control in a patient who is prepared to work with this technology in a sensible way. I haven't had any knock backs yet but equally have not had anything positive to report.

HbA1C? My own worst enemy I think - if my next reading is "getting better" or "on track" - I can see some Trust people saying that I don't warrant funding for CGM. If "way off" - guess it will a case of "well, let's see what happens next time - he's not been using the pump for long enough".

If anyone can suggest any ways I can strengthen my case, I would be grateful to hear them but as said, I think that this is going to be a hard battle to win.

Alan

 

[jonesy]

thanks for that alan...

i've read and read about all i can find, and i thinkthat the Dexcom Seven Plus looks about the best machine.
it is available over here shortly and i have applied to be a customer for the first batch that arrives.
the unit will be about 1,000 pounds and the sensors will be about 50 pounds each, renewable every 7 days.

as my son was only diagnosed a month ago, i will have to fund this myself, but i am happy to pay for anything that may help him.

this machine measures bg every 5 minutes throughout the day, also showing trends and, more importantly, how fast the trend is moving.
i understand that interstitial measurements are slightly behing, but when measuring every single 5 minutes i'm sure it's a good guide. certainly people on the net give it great write ups. it also claims to be more accurate than any other machine in the hypo area.

you can set alarms for both high and low levels that you want to be alerted to, but it has an inbuilt 'hypo alarm' set at 3.5, which cannot be disarmed.

with today's technology, surely it's only a matter of time until a machine like this can communicate with a pump!

jonesy

 

[kegstore]

Alan

Good luck, you'll need lots of it and the full support of your consultant. Unfortunately PCTs are not at all motivated to provide funding for the sensors, partly because they're not accurate enough but also because of the high cost. I get a sense that PCTs feel slightly cornered on funding pumps, i.e. they have to because the NICE guidance is so unequivocal, but won't go the extra distance for the sensors. Bottom line is their main criteria, and you have to have a really good reason for them to ignore it: "maximising an existing investment" just won't cut it sadly.

Sounds like you trialled the Medtronic system? Next time you get a supply of sensors, you can greatly extend their usable life: when you see the "SENSOR END" message just cancel and select "New Sensor" from the appropriate sub-menu, without changing the physical device. You'll be prompted to calibrate almost immediately, after which you have another 3 days use. I routinely get 6 days from mine, and I hear stories of up to 14 days.

Let us know how you get on in your quest!

 

[Alzibiff]

Kegstore - Yes, the Medtronics CGM associated with a Medtronics 522 Real Time pump. Found out about extending the life from an American website last week and I currently have my last sensor on its 7th day (been checking against finger pricks and it does not seem to have deteriorated any). So long as it keeps working reasonably accurately, I am going to keep it in!

Also take your point about funding for all of this technology being based on bottom line budget figures but the alternative for me is to do nothing.

The new Medtronics Veo pump has improved operating software which is claimed does two important things as far as BG sensors go. First of all, as the Veo has an "insulin suspend" facility, they have worked on making the low BG readings more accurate - interpreting low value signals from the sensor more intelligently. As a consequence of this, they have improved the whole sensor signal level interpretation algorithms in the software and support the use of a sensor for 6 days rather than 3. (All this information gathered through reading and researching of course - so I am happy to accept that what I say may not be 100% accurate - anyone wish to contradict?).

Yes, it is all a big uphill struggle and I really do hope that Medtronics and similar companies can bring costs down - which they would be able to I reckon if they were given promises of larger orders and pump/CGM use became the norm rather than the exception. It is interesting how many Type 1s in the USA use CGM and pumps - far far more than in the UK and over there, the funding for them comes from insurance companies who are paying out in order to reduce the total cost of care for their customers with Type 1 diabetes. (Shouldn't the NHS learn from this?).


Alan

 

[jonesy]

hey kegstore....

what is meant to be the best pump out there? you seem the one to ask!

i'm definitely going to look into a pump for my son in the near future. unfortunately i will have to fund this aswell as the CGM, as my hospital aren't part of any funding scheme for pumps.

jonesy

 

[kegstore]

well thank you jonesy but you very quickly become an expert in the management of your own condition! And I'm limited by the products I have experience of - Roche and Medtronic.

Regarding best pump, I think it very much depends on what you/your son want from it. As I understand it, you want the option to add CGM? Which probably limits you to Medtronic unless your son is happy looking after multiple devices attached to him. But Medtronic don't know the meaning of customer service, Roche are MUCH better - they make the Accu-Chek range of pumps, but no CGM as yet. And there are other insulin pumps too, more details in the link below.

Don't give up on pump funding by your PCT - the NICE guidance is for once fairly difficult for them to "interpret". But it will be crucial to have pump therapy expertise available within the PCT. The NICE guidance is here: http://www.nice.org.uk/nicemedia/pdf/TA151Guidance.pdf and INPUT is another organisation that can help out if a PCT are proving troublesome: http://www.input.me.uk/

Best of luck.

 

[jonesy]

kegstore....

my hospital literally are not part of any funding programme. they are applying to be involved but, apparently, it is gonna take time.

even if they do get approval, my son would be WAY down the list as he's newly diagnosed and hasn't really suffered with constant fierce hypos like some people do.

i don't mind, i'd be happy enough to pay.

 

[Pumpfan]

Hello
I have had CGM since March 2009 - what a difference it has made to managing my diabetes - 51 years of type 1 diabetes does mean that I have a reasonable level of knowledge about managing it and I have used a pump since 1983.
Just had the best HbA1C that I have ever had!
Main advantage to me is that approaching hypos can be avoided, as can rises in glucose levels. There is some mismatch between the CGM glucose level (interstitial) and blood test values but you can get used to this discrepancy and take that into account when interpreting the value. Also the CGM will show rate of rise or fall so that you can see which way the glucose level is going.

I have a Medtronic Veo - so pump and CGM are combined. The sensors last for 6 days though can be made to last for a day or so longer - as indicated in earlier comment.
The pump part of the Veo was funded (after much discussion and persuasive reasoning!) by the PCT but the CGM part of the pump and all CGM equipement is funded by me - worth every penny!

 

[jonesy]

getting CGM next week!!!

very happy about it!!


getting the Dexcom Seven Plus, looks a great piece of kit.

jonesy

 

[kegstore]

Great news jonesy - let us know how you and your boy get on with it.

 

[NickW]

Hi jonesy,

can I be cheeky and ask what the Dexcom costs (and the sensors of course), and how you went about getting one? Did you just email the "international" email address at Dexcom, or go through a UK distributor? I only ask because I'm seriously considering trying a CGM and the Dexcom looks like a very good option if the price isn't too extortionate.

Looking forward to hearing how you get on with it!

 

[jonesy]

nick....

i found out that there is one company going to supply it over here. they are called Advanced Therapeutics. they are a pump specialist, but are going to start supplying the Seven Plus.

their site is being updated, but the names and numbers are on it. speak to John Hughes, his number is on there.

i just spoke with him direct. you don't need a prescription as it doesn't administer drugs.

i've got to call on wednesday to finalise the order.

the cost of the unit is going to be around 850 pounds and the running costs are about 50 pounds per week.

http://www.advancedtherapeuticsuk.com/index.html

jones

 

[NickW]

Thanks for the info jonesy, that's great - I'll speak to them and see what the piggy bank will allow!

Cheers,
Nick.

 

[jonesy]

shipment from the US was delayed due to red tape.

picking up, and getting trained on friday morning.

we're rather excited.

jonesy

 

[jonesy]

oh yeah.......costs......


unit is 975 pounds

sensors are 60 pounds each, but i'm told you can definitely use for 10 days, maybe even 14.

jonesy