Proof that sensors and sensor pumps work fantastically

[Adrienne]

Hi

I'm hoping this works, Northerner kindly sorted this for me. This is a graph of Jessica's sensor download last week.

If you look at the dotted line in amongst all the coloured ones that is the average line. We can use that line to make the tweaks to the basal. However I know that these are all pretty much spot on readings with no time lag at all except for the catch up if a bit high or a bit low. Using this sensor we prevent 3 or 4 hypos, caught them all around the very low 4.0's.

Sensors hurt when they are inserted and Jessica does cry sometimes but she knows and I know how beneficial they are to both of us for different reasons.

The second one at the very right shows that we were 81% in range (between 4.0 and 10.0) all week which is fantastic.
I hope this works. 🙂

 

[Northerner]

It worked! 🙂

 

[Adrienne]

Thank you. Will now have to investigate photobucket !😛

 

[Ellie Jones]

Adrienne how long has jessica being using the senors?

Not sure whether I would facy wearing one all the time, but periodically for data collection (and make night time data collection easier) would be nice..

 

[Adrienne]

About 4 years now nonstop.

We were only funded for one per month. After a few months of having no idea what on earth the sensors were actually doing for us I told our team that I needed to use four on the trot to work out how they actually worked for us and whether it would be good or not.

Having one for a week every so often didn't show us anything as it didn't correspond with finger pricks. We did have the first sensor pump though. The VEO is far more advanced and works much better with this first sensor, when the new sensor comes out in a month it should be fabulous.

After the four weeks on the trot we never looked back and have used sensors full time ever since.

There are studies in the USA which show that full time sensor use with all alarms switched on and set do benefit with better results. If you use them once in a while they do not benefit as much which is understandable.

I totally recommend them and anyone that uses them full time will, I know without a shadow of a doubt, agree with me.🙂

 

[Ellie Jones]

Sadly for me CGM's are a bit of a 'pie in the sky' dream even for a loan one..

Partly due to my clinic would say I have perfectly fine control, which I do in the main achieve well, but there is always room for improvement.. And party due to my clinic don't like funding pumps unless they really, really have to, I had to battle every inch of the way for 3 years to get mine.. Then I didn't get a choice of pump I wanted, it was take the spirit or nothing!

 

[SilentAssassin1642]

i would love a CGM full time, and if I could self fund then I would. I think it would really benefit me as my levels are still erratic even now (despite constant tweaks with the ole pump) but my clinic won't even consider looking into funding for me =[

 

[Adrienne]

Look at NICE guidance Sam. They should offer you the use of one for a week at least.

Its not up to the clinic. It is up to the PCT. They can approve it if you can prove that it will improve your control no end and they can see that and justify it. Tell your clinic you want sensors and could they apply to the PCT for you if you put together a details letter about why. You never know.

Could be worth a try.

 

[chrismbee]

It's funny how healthcare technology products don't fall in cost as fast as other consumer products (TV's, 'puters, cameras etc. etc.). 😱

CGM's are an obvious step forward in diabetes control, which could result in savings elsewhere, in treatment of complications for example.

I couldn't possibly believe that the may be some profiteering going on ....

 

[bev]

Hi Adrienne,

Finally you got it on - or rather Northerner did - he he.🙂

I think our highest so far is 79% in range with no hypo's - and we achieved this using sensors too. But now you have talked me through the alerts I am expecting good results. I notice the average SD is only 2.1 - thats brilliant and shows that more stable levels produce better SD's.🙂I also agree that using one sensor in a while is fairly useless in terms of looking for patterns - but I think they are helpful to see what is happening in the times when you wouldnt necessarily test - especially at night-time. I am looking forward to the new sensors coming out as Alex isnt too keen on the way you insert these ones.🙂Bev

 

[everydayupsanddowns]

Look at NICE guidance Sam. They should offer you the use of one for a week at least.

Its not up to the clinic. It is up to the PCT...

What guidance are you talking about here Adrienne? I've bene asking my team about CGMs for almost a year, and have consistently been told that NICE don't recognise CGM as a treatment option in its own right.

I have even enquired about pumping/cgm combo, not because I want to pump (I won't hijhack the thread with my reasons) but because what I DO want is access to a CGM and it seems pretty much the 'easiest' way [sarcasm] to get a full time CGM funded in the UK.

Would be very interested in NICE guideline which advocates CGM as a therapy option.

Oh and HUGE congrats on 80% in range. Brilliant! And almost no hypos to boot 🙂

Notice that on Sunday the 20th you had *almost* 100% in range. I've heard US pumpers describing this rare event as having 'bolused a no hitter' Fantastic!

 

[Ellie Jones]

I wouldn't say it's useless to use perodically...

Don't forget as parents you are seeing it form a 3rd party point of view...

As we all know some of our diabetic management is purely base on a 'stab in the dark judgement based on past experience' which for me is fine as I'm privy to a lot more information, when I take my dogs out for their daily exercise, I know roughly what sort of intensity the exercise is going to be, and after the event, whether it was more or less intence than usual! A child can say yes or no to whether they've had a game of footie at playtime, but can't tell you whether it was more or less intense than usual! How does a parent equate for that in their calculations!

Same as illness, if I'm coming down with a stomach bug I get a warning for probably a good few hours before hand, wishy washy stomach feel, feeling off colour, kids have a nasty habit of being fine one minute and throwing up the next without prewarning, as they don't associate that wishy washing feeling with a stomach bug/illness..

So for a parent/child a CGM is almost a must, a very useful management tool enabling the parent to keep on top of things with short term and long term management..

Adults are different, we have a lot of imformation to hand that parents don't have and we don't change as quickly as children do, so the information we gain from even periodic use has many benefits for us and our management..

Chrismbee

I know what you mean that medical technology doesn't fall in price as quickly as general technology... There are several reasons

More expensive to get through licencing regulations involved..
And they can be made to withdraw the product a lot easier and quicker if found faulty in any shape or manner

Smaller customer base..

And yes you are right there is a percentage added to medical products, wheather they are medication or medical aid based which is totally unfair...

Take items such as none spill beakers in a residential care setting, almost identical to a Tommy Tippee beaker for a child but without the cute little pictures! But costing 3 to 4 times as much!

 

[Adrienne]

What guidance are you talking about here Adrienne? I've bene asking my team about CGMs for almost a year, and have consistently been told that NICE don't recognise CGM as a treatment option in its own right.

I'll find it for you when I get back. There is new stuff and NICE do recognise CGM.

Just taking Jessica to school late. She had a full on hypo last night with severe shaking etc which never happens and has the dreaded D hangover this morning !

 

[Adrienne]

I wouldn't say it's useless to use perodically...

Don't forget as parents you are seeing it form a 3rd party point of view...

As we all know some of our diabetic management is purely base on a 'stab in the dark judgement based on past experience' which for me is fine as I'm privy to a lot more information, when I take my dogs out for their daily exercise, I know roughly what sort of intensity the exercise is going to be, and after the event, whether it was more or less intence than usual! A child can say yes or no to whether they've had a game of footie at playtime, but can't tell you whether it was more or less intense than usual! How does a parent equate for that in their calculations!

Same as illness, if I'm coming down with a stomach bug I get a warning for probably a good few hours before hand, wishy washy stomach feel, feeling off colour, kids have a nasty habit of being fine one minute and throwing up the next without prewarning, as they don't associate that wishy washing feeling with a stomach bug/illness..

So for a parent/child a CGM is almost a must, a very useful management tool enabling the parent to keep on top of things with short term and long term management..

Adults are different, we have a lot of imformation to hand that parents don't have and we don't change as quickly as children do, so the information we gain from even periodic use has many benefits for us and our management..

Chrismbee

I know what you mean that medical technology doesn't fall in price as quickly as general technology... There are several reasons

More expensive to get through licencing regulations involved..
And they can be made to withdraw the product a lot easier and quicker if found faulty in any shape or manner

Smaller customer base..

And yes you are right there is a percentage added to medical products, wheather they are medication or medical aid based which is totally unfair...

Take items such as none spill beakers in a residential care setting, almost identical to a Tommy Tippee beaker for a child but without the cute little pictures! But costing 3 to 4 times as much!

Sorry totally disagree with most of that actually.

Firstly where on earth have I said this : "I wouldn't say it's useless to use perodically...", that's not come from my mouth !

The rest I will reply to once back from school drop off as I 100% believe you are completely wrong.

 

[bev]

I wouldn't say it's useless to use perodically...


Don't forget as parents you are seeing it form a 3rd party point of view...

As we all know some of our diabetic management is purely base on a 'stab in the dark judgement based on past experience' which for me is fine as I'm privy to a lot more information, when I take my dogs out for their daily exercise, I know roughly what sort of intensity the exercise is going to be, and after the event, whether it was more or less intence than usual! A child can say yes or no to whether they've had a game of footie at playtime, but can't tell you whether it was more or less intense than usual! How does a parent equate for that in their calculations!

Same as illness, if I'm coming down with a stomach bug I get a warning for probably a good few hours before hand, wishy washy stomach feel, feeling off colour, kids have a nasty habit of being fine one minute and throwing up the next without prewarning, as they don't associate that wishy washing feeling with a stomach bug/illness..

So for a parent/child a CGM is almost a must, a very useful management tool enabling the parent to keep on top of things with short term and long term management..

Adults are different, we have a lot of imformation to hand that parents don't have and we don't change as quickly as children do, so the information we gain from even periodic use has many benefits for us and our management..

Chrismbee

I know what you mean that medical technology doesn't fall in price as quickly as general technology... There are several reasons

More expensive to get through licencing regulations involved..
And they can be made to withdraw the product a lot easier and quicker if found faulty in any shape or manner

Smaller customer base..

And yes you are right there is a percentage added to medical products, wheather they are medication or medical aid based which is totally unfair...

Take items such as none spill beakers in a residential care setting, almost identical to a Tommy Tippee beaker for a child but without the cute little pictures! But costing 3 to 4 times as much!

Hi Ellie,

I also agree that using one sensor in a while is fairly useless in terms of looking for patterns - but I think they are helpful to see what is happening in the times when you wouldnt necessarily test - especially at night-time.

I didnt say that using sensors periodically is useless - I said the above. If you use a sensor for one week - it will tell you what happened in that week - so you can adjust things as you can see them. However, as you know, things change so much with diabetes that basing anything on that particular week is not going to give good control for long periods of time after that. If, however, you use a sensor more often then you can *see* patterns that you wouldnt see by using one sensor - two or three weeks worth of sensor usage is far more effective than one week. Two or three months worth of sensor usage is even better and enables us to do fine tuning that we wouldnt be able to do with periodic usage.

Yes - as a parent I am seeing things from a third party point of view - but the data is still the same - so if I am presented with a download of data - it is irrelevant whether I am a third party parent or the person with diabetes - the management of that will still be the same.

Alex is 12 - so he is great at explaining how intense a particular activity was - he has been doing this for over 2 years and we have a rating system of 1-10 - and it works very well so far (touch wood). If he were a 2 year old, then clearly he wouldnt be able to explain - but at 12 he is more than capable of doing this. Also, if a child is younger, then the parent will be with them and can see what level the activity is. Dont forget that most parents of a diabetic child will mostly be with the child if doing something so active like swimming or trampolening etc keeping an eye on things and therefore able to adjust things as required. Also, at School, Alex has to make his own judgement regarding P.E. - and he does this very well and has worked out that if P.E. is inside for example, then he doesnt even need to take his pump off and as long as he is around 7mmols - he doesnt need any glucose to get him through. If he is doing rugby then he knows to take the pump off and have some glucose as its so active. If Alex feels ill, he is able to tell me and to be honest, it shows in his levels days before the illness comes out - which is also where sensors are a great tool as we can see a pattern emerging over a few days and can then react to it by using Temporary Basals until the illness has been and gone.

I would say that most parents know their own child's body better than they know their own - simply because we monitor them constantly and we just *know* by instinct sometimes that we need to make a change or tweak or whatever.

A CGM is not only 'useful' for the parent - it also enables the child to have more freedom and alerts a child to either a low or a high - and you would be amazed at how adept a child becomes at reading the data on the pump and *knowing* wether the sensor is 'spot-on' or whether it is a 'bad' sensor etc etc - so this isnt just a tool for the parent - it is a tool for the child and is giving them the opportunity to be pro-active about their own care - which is a brilliant foundation for the future when they will be 100% self-managing.

At clinic, the Consultant speaks to Alex first and asks him what he thinks of the data (which I like) - and usually he is spot-on with his answers, and then they discuss what changes should be made and when and how - so it just shows that all this information is going in and the child isnt just sitting there letting the parent do it all - they are very involved in the whole process and are actively encouraged to get involved in their own care - and sensors just enable us/the child to have a *window* into what is happening in the bigger picture.🙂Bev

 

[everydayupsanddowns]

I firmly believe that I might get a 10% improvement in control with a pump (offset by an increased risk of dodgy set/kinked cannula fun and games).

I suspect a full-time CGMS would probably improve control by more like 30%, possibly considerably more.

Will be very interested to have a chat with the new bod who has taken over at the hospital and see what her views are.

M

 

[bev]

I firmly believe that I might get a 10% improvement in control with a pump (offset by an increased risk of dodgy set/kinked cannula fun and games).

I suspect a full-time CGMS would probably improve control by more like 30%, possibly considerably more.

Will be very interested to have a chat with the new bod who has taken over at the hospital and see what her views are.

M

Hi Mike,

For us, it isnt just about control - it is about freedom and being pro-active. When on injections we just couldnt get anywhere near good control, but also we had a lot of problems with sports etc and once you have injected - thats it - you cant take it back - so we either had lots of hypo's or were feeding the insulin - but on the pump you can deal with these things a lot better.

Alex's HBA1C was 9.6 then went down to 8.5 on MDI - with lots of hard work and monitoring. Then after a couple of months on the pump he was in the 7's and now he is 6.8% - so we have seen the benefits already. Also dealing with illness is so much better on a pump than on MDI - you can change things much quicker and help control the high levels that creep up with illness.🙂Bev

 

[everydayupsanddowns]

Hi Mike,

For us, it isnt just about control - it is about freedom and being pro-active. When on injections we just couldnt get anywhere near good control, but also we had a lot of problems with sports etc and once you have injected - thats it - you cant take it back - so we either had lots of hypo's or were feeding the insulin - but on the pump you can deal with these things a lot better.

Alex's HBA1C was 9.6 then went down to 8.5 on MDI - with lots of hard work and monitoring. Then after a couple of months on the pump he was in the 7's and now he is 6.8% - so we have seen the benefits already. Also dealing with illness is so much better on a pump than on MDI - you can change things much quicker and help control the high levels that creep up with illness.🙂Bev

Don't get me wrong, I'm not disputing the pumps benefits/advantages, and I'll often recommend them to others. In terms of flexibility of delivery there are major advantages. It wouldn't surprise me if I end up pumping at some point, but a CGM? I'd take a consultant's arm off right now. Knowing spot-check BG level information is all very well, but adding in direction of change AND rate of change... Suddenly that's three times the info to work with!

 

[bev]

Don't get me wrong, I'm not disputing the pumps benefits/advantages, and I'll often recommend them to others. In terms of flexibility of delivery there are major advantages. It wouldn't surprise me if I end up pumping at some point, but a CGM? I'd take a consultant's arm off right now. Knowing spot-check BG level information is all very well, but adding in direction of change AND rate of change... Suddenly that's three times the info to work with!

Hi Mike,

I have just changed the pump settings to tell us the rate of change (as advised by Adrienne) and we now get alerts if there is likely to be either a high or low within the next twenty minutes - which is determined by the rate of fall or rise - ours is set at 0.220 - which is so helpful for Alex at School as it means that (in theory) he can avoid a hypo by just having a couple of glucose tablets or whatever and stops it in its tracks.🙂Bev

 

[Adrienne]

What guidance are you talking about here Adrienne? I've bene asking my team about CGMs for almost a year, and have consistently been told that NICE don't recognise CGM as a treatment option in its own right.

I have even enquired about pumping/cgm combo, not because I want to pump (I won't hijhack the thread with my reasons) but because what I DO want is access to a CGM and it seems pretty much the 'easiest' way [sarcasm] to get a full time CGM funded in the UK.

Would be very interested in NICE guideline which advocates CGM as a therapy option.

Oh and HUGE congrats on 80% in range. Brilliant! And almost no hypos to boot 🙂

Notice that on Sunday the 20th you had *almost* 100% in range. I've heard US pumpers describing this rare event as having 'bolused a no hitter' Fantastic!

Hiya

NICE hasn't been updated since 2004 but there is a new position statement here :


http://www.technologyadoptioncentre...1276787962_ABCD_position_statement_on_CGM.pdf

It was produced in 2010 and has helped a few people get CGMS

The still says this :

Continuous glucose monitoring systems have a role in the assessment of glucose B profiles in adults with consistent glucose control problems on insulin therapy, notably:
● repeated hyper- or hypoglycaemia at the same time of day
● hypoglycaemia unawareness, unresponsive to conventional insulin dose adjustment.

This needs updating big time as there was not sensor pumps in 2004 and only antiquated CMGS. It has advanced hugely.

The position statement helps more.