Sensor/CGM loan

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Hanmillmum

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Just been over to the hospital with dd this morning after I phoned her DSN to say we were struggling to get any decent readings over the past few weeks due to lingering virus. Been using TBR in varying degrees but still getting random spikes and low periods that would follow no pattern and leave us incredibly frustrated.

So CGM now in place on other buttock and I am quite fascinated watching the little line form on the pump tracking the BG's. Fingers crossed it will help shine some light on what is going on and somewhere near to being back on track. Feeling quite hopeful 🙂
 
CGM is a wonderful thing! I would love my son to wear one full time, but we can't get funding. He's got one in this week, being the first week back to school after the holidays. Expecting lots of changes! Hope you find it useful 🙂
 
thanks NRB

Redkite, out of interest, do you self fund those occasional ones for your son or are they on loan from his team?
 
I originally bought the transmitter for ?750 (back in 2008, so it has well outlasted its 6 month warranty!). However, when we moved hospital clinic we were able to get funding for ten sensors per year (enlites). I use them for things like exam weeks, school trips, etc., and occasionally buy an extra box if I'm feeling flush (?275 for a box of 5 sensors). My son's consultant has applied for full-time funding because of his proteinuria, but the change to CCGs has apparently led to all funding requests currently being rejected. The problem is that there is no NICE guidance for sensors.
 
My GP has just written to my ccg to ask for funding, he was going to do it back in December but held back due toa meeting being held by the ccg to explain how to apply successfully for funding and what they will not fund under any circumstances. Not to sure think the next funding meeting is in a couple of weeks time and the committee then writes to the GP with their answer or requesting more details. As I expect a no I wont be disappointed 🙂
 
Good luck Sue, you never know! 🙂

My son's consultant (when we saw him in December) was saying something about new CCG guidelines setting a limit of a certain number of funding requests per "cohort" - not sure how each cohort is defined! He used to be able to secure funding under "exceptional needs", but the CCGs are now working together nationally and have discovered that (surprise surprise) there is more than one person in the UK with any given "exceptional need"! He thinks that unless and until sensors are "NICE'd" it will be nigh impossible to get funding. And of course this has implications for the artificial pancreas, because if no funding is available for sensors, nobody will be able to have an artificial pancreas when they become available. :(
 
Redkite - will you continue to be funded for the 10 per year if you don't get the full-time funding?

It's a concern these cutbacks, we were looking forward with interest in the combined sensor with regular cannulas that Medtronic are ready to bring out later this year. The only off-putting thing at the moment is wearing a separate piece which looks a little large and uncomfortable on a little girl. However, I can report a steady afternoon with a smidge of tweaking, it's going well so far 🙂🙂

Certainly worth a try to the CCG's though, and good luck Sue with your case.
 
Hanmillmum said:
Redkite - will you continue to be funded for the 10 per year if you don't get the full-time funding?

It's a concern these cutbacks, we were looking forward with interest in the combined sensor with regular cannulas that Medtronic are ready to bring out later this year. The only off-putting thing at the moment is wearing a separate piece which looks a little large and uncomfortable on a little girl. However, I can report a steady afternoon with a smidge of tweaking, it's going well so far 🙂🙂

Certainly worth a try to the CCG's though, and good luck Sue with your case.
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Yes, as far as I know. I think UCLH have a standard "fixed price package" for each pump patient, which includes the ten sensors.

What's this about a new Medtronic device? I'd be very interested to find out more about that! 🙂
 
Unfortunately we missed the Medtronic pump rep talk last week where it was discussed. DSN was speaking to us about it today, I will text her tomorrow and ask what the new product will be called as can't find it via a search on google 🙂 (would be great though, yes?)
 
There is a short article I read somewhere about a combined sensor/cannula I think it was Diatribe. One of the main problems was the need to change the combined cannula every 3 days to ensure insulin delivery whereas separately you can get 6 days plus an extra day out of each sensor. It would be a great way to achieve both things without having separate pieces of medical equipment stuck in you.

Hanmillmum I hope it helps your daughter find some answers on where is best to change basal levels. It is fascinating watching the sensor line wobble or rollercoaster through the day and night. I didn't want to eat for the first few days of using a sensor for fear of spoiling my graph line. Good luck with it.
 
Hope you find your answers Hanmillmum.
Thanks for the good vibes everyone in my quest for sensors.
 
Hi Hanhillmum,

Its great when you first use a sensor isnt it - so much information that you didnt know about before. I hope you find some patterns and make some changes.

Flower - out of interest - do you self-fund your sensors or are they provided by your team? I only ask as it seems rare for an adult to use them which is a shame and something I worry about for Alex. We self-fund at the moment but given the changes in the NHS I cant see them wanting to fund anyone in future unless there are 'special circumstances' which would no doubt mean most adults would find it hard to put forward a case for them.

Sue - I hope you can get CGM's - what pump do you use?🙂Bev
 
Hi Bev I have the animas vibe. GP has put the case for funding due to having Addison's. He swears blind there's no one else quite like me so should have funding for that alone :D
 
I'd LOVE to try CGM but my endocrinologist said no even though she admitted there were a couple of devices knocking about the dept. I often wonder why she said no. Because my control is loose? I thought it might help cure my anxiety.
 
Bloden said:
I'd LOVE to try CGM but my endocrinologist said no even though she admitted there were a couple of devices knocking about the dept. I often wonder why she said no. Because my control is loose? I thought it might help cure my anxiety.
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I suspect it's the cost of the sensor or the fact they haven't got any.
Perhaps ask what cgms they have knocking around and once you have found that out ask the manufacturer if you can buy a single sensor. They are about 50 or 60 pounds so do be warned.

Oops just seen that you are in Spain so things may be different there.
 
Continuing to go well with sensors, pleased as picked up two problem areas into the beginning of her night and near to her waking this morning too which despite some night testing I have missed. Little one tolerating it but missing her baths. She is lots better in herself so back to school tomorrow - yay!!:D

Thanks for all the well wishes with it x
 
What brand of CGM have you been given? My son has baths with his sensor on, and it's fine for swimming etc. I cover it with a tegaderm or IV3000 but that's more to keep it from snagging on things, as it's waterproof when sensor and transmitter are connected to each other.
 
As redkite says, there should be no problem going in the bath. If you want it to keep reading you can just keep the pump/monitor on the side within range. The only time I remove it for water is for a jacuzzi as I find the super hot water makes the readings inaccurate and I worry about overheating the transmitter.
 
Redkite said:
What brand of CGM have you been given? My son has baths with his sensor on, and it's fine for swimming etc. I cover it with a tegaderm or IV3000 but that's more to keep it from snagging on things, as it's waterproof when sensor and transmitter are connected to each other.
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AlisonF said:
As redkite says, there should be no problem going in the bath. If you want it to keep reading you can just keep the pump/monitor on the side within range. The only time I remove it for water is for a jacuzzi as I find the super hot water makes the readings inaccurate and I worry about overheating the transmitter.
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Thanks for info. This is just what DSN had advised me - told it couldn't be soaked but ok for a shower. It's well covered with tegaderm mind! Will check the brand now you've both said that. I did wonder how others on them full time got on with bathing/swimming.
 
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