# Partha Kar says costs negotiated should mean any CGMs are available



## Bruce Stephens (Jul 18, 2022)

__ https://twitter.com/i/web/status/1548968348905619456


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## SB2015 (Jul 18, 2022)

Good to have Partha Kar so much on the case.

Our clinic has already told us that are self funding CGMs should have funding by the end of the year. 
Keep asking.


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## rayray119 (Jul 18, 2022)

Ah so my ccg saying "were asking for funding for it"  isn't quite right then.


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## rayray119 (Jul 20, 2022)

So could a CCG be challaged if they say there asking for funding when allreasy funding for the libre


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## Bruce Stephens (Jul 20, 2022)

rayray119 said:


> So could a CCG be challaged if they say there asking for funding when allreasy funding for the libre


Yes, and Partha Kar's saying he'll support such challenges.


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## everydayupsanddowns (Jul 21, 2022)

I’ll be really interested to see how the conversation goes at my next pump clinic appointment (whenever that is!) given my CCG’s historic ‘blanket no’ approach when I’ve asked before.


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## zoeval (Jul 23, 2022)

I’ve been offered the Dana I as I was interested In closed looping they told me I have to pay up to £70 for camapps and implied I could get Dexcom but have Just received a copy of the consultants letter to the GP which says Dexcom is not funded


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## helli (Jul 23, 2022)

everydayupsanddowns said:


> I’ll be really interested to see how the conversation goes at my next pump clinic appointment (whenever that is!) given my CCG’s historic ‘blanket no’ approach when I’ve asked before.


My next appointment is a few weeks away.
Previous appointments I have been told the Libre budget is in a different pot to any other CGM.
When I told my DSN via email I had a trial for the Medtrum CGM, she told me there was no budget for it even though it was the same price as Libre.
I have been self funding ever since. My HBA1C has remained good but my TIR has significantly improved (increased from 70 to 90%).
I expect an interesting conversation.


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## Pumper_Sue (Jul 23, 2022)

I was promised via letter that the NHS would fund my CGM (Dexcom) only to have a Libre2 handed to me, so pointed out it was not a CGM and due to my disabilities I couldn't use the Libre 2. I have complained to the CCG and weeks ago they promised a reply am still waiting.
As far as I am concerned it's discrimination under the disability act.


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## everydayupsanddowns (Jul 24, 2022)

Yup @helli @Pumper_Sue - this is pretty much exactly what I fear I will be faced with.

Hopefully we will start to hear some more positive experiences too.


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## nekromantik (Aug 6, 2022)

I am in annoying situation.
After asking for almost 2 years my hospital finally approved Dexcom G6 funding on Monday but my CCG have removed the form I was told due to the guidelines changes so they need to update it but no idea when it will be done. Could be week or two or months!


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## Pumper_Sue (Aug 6, 2022)

everydayupsanddowns said:


> Yup @helli @Pumper_Sue - this is pretty much exactly what I fear I will be faced with.
> 
> Hopefully we will start to hear some more positive experiences too.


Positive result here, been told by DSN I am to have the G6 and a new pump (Tslim) so can make good use of both 
I wont believe it until it actually happens but on cloud 9 at the moment.


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## SB2015 (Aug 7, 2022)

Pumper_Sue said:


> Positive result here, been told by DSN I am to have the G6 and a new pump (Tslim) so can make good use of both
> I wont believe it until it actually happens but on cloud 9 at the moment.


Great to have got in at just the right time Sue.


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## Pumper_Sue (Aug 7, 2022)

SB2015 said:


> Great to have got in at just the right time Sue.


The CGM is good timing as only have a months supply of my G6 left from a 12 month supply. Pump is going to be about 12 months early so more than pleased as do not like the medtronic pump at all.


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## nekromantik (Aug 7, 2022)

Pumper_Sue said:


> The CGM is good timing as only have a months supply of my G6 left from a 12 month supply. Pump is going to be about 12 months early so more than pleased as do not like the medtronic pump at all.


wow congrats.
how did you manage to convince them to give you new pump 12 months early?
My 640G Medtronic warrenty does not end until October 2023 and they having none of it haha


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## Pumper_Sue (Aug 7, 2022)

nekromantik said:


> wow congrats.
> how did you manage to convince them to give you new pump 12 months early?
> My 640G Medtronic warrenty does not end until October 2023 and they having none of it haha


Thank you 
DSN said she was going to order the pump for me so I did own up and say I had another year on my warranty and she said it didn't matter. So I will await with interest to see what happens. Obviously sorting out the training with the rep as a new pump to the clinic will take time so not expecting things to happen next week lol.


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## SB2015 (Aug 7, 2022)

Pumper_Sue said:


> Pump is going to be about 12 months early so more than pleased as do not like the medtronic pump at all.


I got my 780 quite  early as it fitted in with the training they wanted to rganise.  Also a new pump for the clinic so we all learnt together, which was a bit scary at times.  I had never used their other pumps so the switch took a bit of getting used to but excellent support provided.  

Very happy now and glitches are few and far between so more than happy to stick with Medtronic, although I shall be interested in your experiences of T-slim. I hope that you don’t have to wait too long.


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## Pumper_Sue (Aug 7, 2022)

SB2015 said:


> I got my 780 quite  early as it fitted in with the training they wanted to rganise.  Also a new pump for the clinic so we all learnt together, which was a bit scary at times.  I had never used their other pumps so the switch took a bit of getting used to but excellent support provided.
> 
> Very happy now and glitches are few and far between so more than happy to stick with Medtronic, although I shall be interested in your experiences of T-slim. I hope that you don’t have to wait too long.


As far as I know it's a 1 -1 for the training.
My only worry really is the thought of having to rely on a device to make the decisions and deliver the insulin. I think I'm going to find that very hard to adjust too and trust as well.


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## SB2015 (Aug 8, 2022)

Pumper_Sue said:


> As far as I know it's a 1 -1 for the training.
> My only worry really is the thought of having to rely on a device to make the decisions and deliver the insulin. I think I'm going to find that very hard to adjust too and trust as well.


It took me sometime to allow the pump to do the job it is designed to do, but it is worth sticking with it if you can and it could lead to a lot less thinking about your diabetes. Give it a chance, and then find work around for some things, remembering that previously you were doing all the work before, and we then just have to deal with oddities.


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## Pumper_Sue (Aug 8, 2022)

SB2015 said:


> Give it a chance, and then find work around for some things, remembering that previously you were doing all the work before, and we then just have to deal with oddities.


I suspect I'm going to needs lots of toys to throw out of the pram


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## everydayupsanddowns (Aug 8, 2022)

Pumper_Sue said:


> I suspect I'm going to needs lots of toys to throw out of the pram



It’s nothing like such a scary hand-over of control @Pumper_Sue 

Control IQ uses the profile you have set up for its adjustments (so you can tweak your profile to make the CIQ assistance lighter or firmer) and you still need to bolus for meals etc. Exercise mode and (especially) Sleep Mode are very handy, but in general day-to-day CIQ is just adding a little finesse around the edges rather than doing everything for you.

At least that‘s how it works for me


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## Pumper_Sue (Aug 8, 2022)

everydayupsanddowns said:


> It’s nothing like such a scary hand-over of control @Pumper_Sue
> 
> Control IQ uses the profile you have set up for its adjustments (so you can tweak your profile to make the CIQ assistance lighter or firmer) and you still need to bolus for meals etc. Exercise mode and (especially) Sleep Mode are very handy, but in general day-to-day CIQ is just adding a little finesse around the edges rather than doing everything for you.
> 
> At least that‘s how it works for me


Thank you, with me it's just the idea of trusting technology rather then making the mistakes myself and knowing I made them.
Looks like I will need to fine tune my basal a bit more 
As a matter of interest how similar are the medtronic and tslim algorithms please?


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## SB2015 (Aug 8, 2022)

Pumper_Sue said:


> I suspect I'm going to needs lots of toys to throw out of the pram


Just hang on to the pump.


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## everydayupsanddowns (Aug 8, 2022)

Pumper_Sue said:


> Thank you, with me it's just the idea of trusting technology rather then making the mistakes myself and knowing I made them.
> Looks like I will need to fine tune my basal a bit more
> As a matter of interest how similar are the medtronic and tslim algorithms please?



As I understand it they aim to achieve similar results, but their inner workings are quite different in detail.

Both suspend to prevent predicted lows (Medtronic’s smartguard was more effective at this than control IQ), and will increase basal / add mini-boluses to aim to avoid high BGs, but they use different approaches, trigger levels etc.

Medtronic ‘learns’ your needs over a 2 werk period, then does away with basal patterns entirely I think. Tandem’s uses the pattern / correction factors etc in your profile to inform it’s decisions.

I’ve heard good reports of the 780, but havent used it, so understand it less well.


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## PhoebeC (Aug 9, 2022)

My nurse has said they only offer Tandem T slim pump with control IQ and the ypsopump at the moment. I don't want tubes at all.
This is very good to know. 

I have been looking at those which work with the Dexcom and a few are pod systems. Otherwise I will just wait until they can offer these. Tubes are not for me, I don't mind wearables.


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## Pumper_Sue (Aug 9, 2022)

PhoebeC said:


> I have been looking at those which work with the Dexcom and a few are pod systems. Otherwise I will just wait until they can offer these. Tubes are not for me, I don't mind wearables.


IN all honesty you just do not notice the tubes. Perhaps try tubed pump and see what it's like or just a cannula with a tube attached.
It's daft just dismissing something because you think you wont like it, esp if you have a better quality of life.


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## PhoebeC (Aug 9, 2022)

Pumper_Sue said:


> IN all honesty you just do not notice the tubes. Perhaps try tubed pump and see what it's like or just a cannula with a tube attached.
> It's daft just dismissing something because you think you wont like it, esp if you have a better quality of life.


I will give it a go, I definitely don't want a big one, that would be a negative for me, I am not ruling anything out.


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## helli (Aug 9, 2022)

@PhoebeC When it comes to insulin pumps, I have been "tubed" and "patched".
My first pump was a tubey one. The tubes themselves were not an issue for me. I was not always catching the tubes on door handles or losing my pump in bed. As a first pump, it was a great introduction to pumping. 
However, I struggled with it always on display and lacking in places to put it. I know some women put ther pump in their bra or hang it on their bra strap. I am too small in that area to hide the lump of the pump. I usually ended up with it hanging off my belt but felt like Mr (Ms?) Gadget. 
My second and current pump is a patch pump. It is far more discrete but I have sensitive skin and the whole of the patch pump is in contact with my skin which causes problems compared to a small cannular with a tubey pump. I also have to plan the next three days in my mind when I place my path pump - I need to make sure it is out of the way of my harness if I am going climbing in the next 3 days, I have to consider the best place to hide the small(er) bump if I am going to wear a dress, ... When I wore a tubey pump, I could move the pump around on its tether depending where I needed (or 
didn't need) it.

So there are pros and cons with both types of pump. For me, the patch pump is better but I would not refuse the huge benefits of having a pump if I only had a choice of tubey pumps.


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## PhoebeC (Aug 9, 2022)

@helli thank you that is helpful.

I also have a very active lifestyle, I don't mind having it on display, but I am also slim and petite to my surface area and as you said boobs etc. I am limited. 

What I really need to think of is how I can have a pump (any type) and play full contact rugby  I think the Accu-Chek Solo is the only one that is detachable.

I am only at the very first stages, I have never been offered a pump or even thought about it as an option until very recently but I struggle with my background insulin (lows overnight) and my only solution is having hinger levels in the morning by having less insulin.


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## Pumper_Sue (Aug 9, 2022)

PhoebeC said:


> I will give it a go, I definitely don't want a big one, that would be a negative for me, I am not ruling anything out.


You can have different lengths of tubing so not an issue and if you still feel it's a bit long then treat it as a hose pipe and roll it and pop a bit of tape on the tube to stop it uncurling. There's ways and means for everything.


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## Pumper_Sue (Aug 9, 2022)

PhoebeC said:


> What I really need to think of is how I can have a pump (any type) and play full contact rugby  I think the Accu-Chek Solo is the only one that is detachable.


All the tubed pumps are detachable just leave your cannula in and remove pump for whilst playing and attach again at half time, problem solved


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## helli (Aug 9, 2022)

PhoebeC said:


> What I really need to think of is how I can have a pump (any type) and play full contact rugby  I think the Accu-Chek Solo is the only one that is detachable.


Wow! Maybe you need to have a chat with Henry Slade  
Seriously, I believe all tubey pumps can be disconnected. The cannula effectively comes in two pieces which click together: the bit which goes into your body and the bit that is connected to the tube. With a tubey pump, it is removed using this mechanism whenever you go in the shower. My patch pump (the only one I have experience of) is not detachable between set changes.


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## PhoebeC (Aug 9, 2022)

Thanks for those details. 

@helli I did think about messaging him, but he only got married last week and he should be able to enjoy his honeymoon in peace


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## Squirrel768 (Aug 10, 2022)

Pumper_Sue said:


> I was promised via letter that the NHS would fund my CGM (Dexcom) only to have a Libre2 handed to me, so pointed out it was not a CGM and due to my disabilities I couldn't use the Libre 2.


Hi @Pumper_Sue - Actually, Libre 2 IS a CGM, just that Abbott decided not to implement it in their LibreLink app, so they still treat it as flash. (Guess it is because they didn't want to let on given the upcoming Libre 3 which will not have Flash capability.)

I successfully run my Libre 2 as CGM using Diabox, which picks up the readings transmitted by L2 every 5 minutes (I can set it to every minute but Android APS is not happy with that frequency from it). The L2 sends out those readings for LibreLink to decide if it needs to give an alert for out of range (no snooze capability - which I have in Diabox as well) but you still have to scan to get the reading in LibreLink. I get the display on the app updated every 5 minutes, so I can see at a glance where things are heading.

So, come on Abbott - why not have your assessment saying 'Well Done' instead of 'Could do better'!


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## Pumper_Sue (Aug 11, 2022)

Squirrel768 said:


> I successfully run my Libre 2 as CGM using Diabox, which picks up the readings transmitted by L2 every 5 minutes (I can set it to every minute but Android APS is not happy with that frequency from it). The L2 sends out those readings for LibreLink to decide if it needs to give an alert for out of range (no snooze capability - which I have in Diabox as well) but you still have to scan to get the reading in LibreLink. I get the display on the app updated every 5 minutes, so I can see at a glance where things are heading.


If you could translate that into plain English IE., non high tech speak that would be fabulous


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## Squirrel768 (Aug 11, 2022)

Pumper_Sue said:


> If you could translate that into plain English IE., non high tech speak that would be fabulous


Hi @Pumper_Sue simply put, Libre 2 sends out a reading every minute or so. LibreLink 'listens' to those readings to see if you are in range and if not will trip an alarm. You then have to scan to find out what the reading is. If you treat e.g. a hypo, but are still out of range half an hour later, you have to keep scanning, as you don't get any more alarms to say you need more correction.

Diabox will read the signal from Libre 2 every minute if you want (I have mine set to every 5 minutes). It shows a graph on the phone with those readings without having to do a scan. If you are out of range e.g. a hypo, and have a coupe of jelly babies, it may be that you need more correction. If you are still out of range 15 minutes later and you snoozed the alarm (other settings are available) it will give another alarm if you are still out of range. No need to scan to see if you are back in range. Checking the app will show whether the graph is going up, down, or runing fairly level.

Hope that is clearer, but do feel free to come back if you want anything else explained 

Tony.


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