Pump starts should come with CGM automatically

[Steffany]

So after many years of resisting it I have finally gone onto the pump.
They fitted me out last Monday with a saline run through so I could get used to pump care first and see if I was ok wearing it. The aim is to go live with insulin this Monday coming (so wish me luck! ), but there is one thing that's bugging me.
So the whole reason I wanted to go on this pump in particular (Medtronic minimed 640g) was because it could link up with a CGM (enlite in this case) and given the fact I have brittle type one diabetes now it's kind of a good idea to have that extra data. I've been using a freestyle libre my parents have kindly been paying for before this, but I can't take £50 off them every 2 weeks for the rest of my life; it's just not fair. So given the enlite is kind of the NHS version when my doctor suggested we team up the pump and the CGM together so I'm more stable I finally caved and decided to do it.
However starting the pump the diabetic nurse said that I wouldn't be starting the enlite CGM at the same time as the pump, as they don't do that. Which left me completely baffled.
1. Are you kidding? I'm used to having the CGM data, going back to blood tests feels like going back to the Stone Age! I'm doing at least 10 blood sugars a day and I still don't have half the data I've become accustomed to.
2. Obviously the first few weeks on the pump are full of fine tuning and tweaking, surely a CGM would make that process way easier?
3. Yes I realise it's more complicated to put on, but I've got a type of experience with the libre, I'm doing fine with the pump itself I'm sure I'd pick it up quickly.
4. Because letting someone with brittle type one diabetes who has to use a diabetic alert dog because she has no awareness have less information and therefore less control is a SUPER good idea.
5. Considering I'm having to do like 10 strip tests a day I'm probably causing the NHS to pay out more than they would for the enlite. I know you guys are super into budget cuts at the moment so there's a quick one for you!
6. That was the whole reason why I wanted to go on this pump!
Let me have it now or I'm going to scour the internet and sell a kidney to buy it myself so then the transition to the pump will be easier and safer.
Seriously people this should be an automatic if you're a brittle type one!

 

[JBlaza]

Just want to sympathise, I agree with how useful a cgm is in managing BGs! I hope NICE / NHS recognises the short term cost of cgms must massively reduce the long term cost of test strips and complications...

 

[GrantGam]

So after many years of resisting it I have finally gone onto the pump.
They fitted me out last Monday with a saline run through so I could get used to pump care first and see if I was ok wearing it. The aim is to go live with insulin this Monday coming (so wish me luck! ), but there is one thing that's bugging me.
So the whole reason I wanted to go on this pump in particular (Medtronic minimed 640g) was because it could link up with a CGM (enlite in this case) and given the fact I have brittle type one diabetes now it's kind of a good idea to have that extra data. I've been using a freestyle libre my parents have kindly been paying for before this, but I can't take £50 off them every 2 weeks for the rest of my life; it's just not fair. So given the enlite is kind of the NHS version when my doctor suggested we team up the pump and the CGM together so I'm more stable I finally caved and decided to do it.
However starting the pump the diabetic nurse said that I wouldn't be starting the enlite CGM at the same time as the pump, as they don't do that. Which left me completely baffled.
1. Are you kidding? I'm used to having the CGM data, going back to blood tests feels like going back to the Stone Age! I'm doing at least 10 blood sugars a day and I still don't have half the data I've become accustomed to.
2. Obviously the first few weeks on the pump are full of fine tuning and tweaking, surely a CGM would make that process way easier?
3. Yes I realise it's more complicated to put on, but I've got a type of experience with the libre, I'm doing fine with the pump itself I'm sure I'd pick it up quickly.
4. Because letting someone with brittle type one diabetes who has to use a diabetic alert dog because she has no awareness have less information and therefore less control is a SUPER good idea.
5. Considering I'm having to do like 10 strip tests a day I'm probably causing the NHS to pay out more than they would for the enlite. I know you guys are super into budget cuts at the moment so there's a quick one for you!
6. That was the whole reason why I wanted to go on this pump!
Let me have it now or I'm going to scour the internet and sell a kidney to buy it myself so then the transition to the pump will be easier and safer.
Seriously people this should be an automatic if you're a brittle type one!

I'm glad to hear you have a pump, I'm very envious of you I'm sure that it will help a great deal towards your management.

I'll tag @donnellysdogs for you, as she obtained temporary funding for a CGM. Like you, she has very hard to manage diabetes, but does an excellent job in doing so. She may be able to help you in how to argue your case for CGM funding, even if it is just temporary.

I bought this book (when my diabetologist suggested pump therapy as an option) and it is very good. It may help you I'm adapting to life on an Insulin pump:

http://www.diabetesnet.com/dmall/pumping-insulin

Good luck to you and I wish you all the best

 

[Dairygrade]

Hi just a quick good luck with your new pump hope all goes well steffany.

 

[luv2spin]

Could it be the reason for the nurse saying that one wouldn't be starting the enlite at the same time as minimed 640g for getting and adjusting the ratios first, the insulin/carb and other ratios etc.? Could worth be checking, unless they are not giving at all.

I know a Brittle Type 1 girl who also speaks English in another country than yours and she was on Medtronic minimed 640g for many many years, and with Medtronic pumps, and also with enlite combination as well as with other CGM combinations like Dexcom and knows a lot about the ins and outs of the usage and currently trying Medtrum Patch Pump (Medtrum A6 - CGM combination system).

She is also a blogger - A pump users blogger - and her blog is very rich all with lots of self made videos on Medtronic 640G and Enlite G2. Although the blog is not in English, just in case one day you may want to have a look and ask something to her regarding your particular pump, I am giving the link;

http://www.diyabetimben.com/

 

[Steffany]

I'm glad to hear you have a pump, I'm very envious of you I'm sure that it will help a great deal towards your management.

I'll tag @donnellysdogs for you, as she obtained temporary funding for a CGM. Like you, she has very hard to manage diabetes, but does an excellent job in doing so. She may be able to help you in how to argue your case for CGM funding, even if it is just temporary.

I bought this book (when my diabetologist suggested pump therapy as an option) and it is very good. It may help you I'm adapting to life on an Insulin pump:

http://www.diabetesnet.com/dmall/pumping-insulin

Good luck to you and I wish you all the best

Thank you for being so helpful!

 

[Steffany]

Could it be the reason for the nurse saying that one wouldn't be starting the enlite at the same time as minimed 640g for getting and adjusting the ratios first, the insulin/carb and other ratios etc.? Could worth be checking, unless they are not giving at all.

I know a Brittle Type 1 girl who also speaks English in another country than yours and she was on Medtronic minimed 640g for many many years, and with Medtronic pumps, and also with enlite combination as well as with other CGM combinations like Dexcom and knows a lot about the ins and outs of the usage and currently trying Medtrum Patch Pump (Medtrum A6 - CGM combination system).

She is also a blogger - A pump users blogger - and her blog is very rich all with lots of self made videos on Medtronic 640G and Enlite G2. Although the blog is not in English, just in case one day you may want to have a look and ask something to her regarding your particular pump, I am giving the link;

http://www.diyabetimben.com/

I'll have to look her up, thank you

 

[catapillar]

I started on the Medtronic 640 with the CGM sensors on the same day. It wasn't a massive change as I was using a pump before hand, so the 640 just got set up with the same basal rate as I was using on the omnipod. And I was using a self funded dexcom CGM prior to getting the 640 sensors funded. So I took off my dexcom sensor (it was over 14 days old when the new pump was started and I didn't especially want 3 medical devices stuck in me). I wouldn't necessarily recommend putting quite so much faith in the Medtronic sensors, they really need a 24 hour warm up period before starting to improve accuracy. Which is something I found out on day 2 when the only CGM I was relying on was a not very happy/accurate Medtronic sensor and I got a visit from two nice paramedics, who were impressed that I was able to talk them down from hypostop gel in preference for dextrose tablets when my monitor was saying low and I was obviously fighting to stay conscious.

 

[ce81ar]

I'd like to say it was logical, but having seen the system 'work' over the years it's prossibly because your DS isn't used to having that level of data and is only trained on the normal system. I privately fund CGM and although I originally didn't plan to use it all the time, I now feel blind when I don't have a sensor in. I'd carry on using the libre whilst you are getting set up as it will help you know when the settings are way off and you'll be able to react faster. It's also invaluable in getting your basal amounts set up right. I have been criticised by a registrar in the past for having too many different basal changes in a day. I set it up to what I needed to get a flat line through the day when I ate no carbs. You live with your diabetes 24/7, which gives you far more 'training' hours than the professionals ever get. Don't get me wrong, some of them are excellent, but the fact that they have diabetes in their job title is no guarantee of that.

 

[tim2000s]

1. Are you kidding? I'm used to having the CGM data, going back to blood tests feels like going back to the Stone Age! I'm doing at least 10 blood sugars a day and I still don't have half the data I've become accustomed to.
2. Obviously the first few weeks on the pump are full of fine tuning and tweaking, surely a CGM would make that process way easier?
3. Yes I realise it's more complicated to put on, but I've got a type of experience with the libre, I'm doing fine with the pump itself I'm sure I'd pick it up quickly.
4. Because letting someone with brittle type one diabetes who has to use a diabetic alert dog because she has no awareness have less information and therefore less control is a SUPER good idea.
5. Considering I'm having to do like 10 strip tests a day I'm probably causing the NHS to pay out more than they would for the enlite. I know you guys are super into budget cuts at the moment so there's a quick one for you!
6. That was the whole reason why I wanted to go on this pump!
Let me have it now or I'm going to scour the internet and sell a kidney to buy it myself so then the transition to the pump will be easier and safer.
Seriously people this should be an automatic if you're a brittle type one!

1. If you can (and your parents are willing to pay), use the Libre in the first couple of weeks of pump use. It will make life easier, especially given the daftness of the team at your hospital.
2. It does. I used the Libre when I first went on to a pump.
3. I doubt they're even considering that.
4. Interesting that your family went with a diabetic alert dog over a CGM system - CGMs are generally considered more reliable than DADs.
5. The NHS has to pay for CGM systems according to the manufacturer specs, so they have to spend £275 per month on Enlites, plus the £500 start up costs. The tests strips, even at 10 a day, will only be costing them £90, so it doesn't save them any money that way. More likely that they will have to pay less for Emergency call outs or A&E activity as a result, which saves a lot more.
6. I think anyone going on to pump therapy should have a free couple of weeks with CGM/Libre as it really helps understand what's happening and makes set-up a lot easier.