CGM funding revoked?

[adi_mrok]

Hi has anyone ever got their CGM funding taken back? My wife recently had a visit with a diabetes team member and after the meeting in appointment letter weird sentence has appeared saying that at current circumstances she wouldn't qualify for cgm even though she has one now. I don't even understand why he thought she wouldn't qualify as the reason she was able to limit amount of hypos during the nights is because of CGM and she still struggles with detecting lows in her sleep. I am now a bit afraid of what might happen...

 

[ert]

Funding for Libres or Dexcoms because of hypo unawareness has this condition attached to it. Once you become hypo aware, theoretically the funding stops. Also, all funding is supposed to be reassessed every 6 months. They hope to fund 20% off type 1's eventually, but not 100%.

 

[adi_mrok]

Funding for Libres or Dexcoms because of hypo unawareness has this condition attached to it. Once you become hypo aware, theoretically the funding stops. Also, all funding is supposed to be reassessed every 6 months. They hope to fund 20% off type 1's eventually, but not 100%.

She has a medtronic cgm system and she is aware of hypos during the night thanks to cgm and its inbuilt alarm, if she gets cgm taken away I am afraid she might go back to what has been happening before CGM era.

 

[ert]

She has a medtronic cgm system and she is aware of hypos during the night thanks to cgm and its inbuilt alarm, if she gets cgm taken away I am afraid she might go back to what has been happening before CGM era.

Yeah. I sympathise. I set alarms every 4 hours overnight to check my blood sugars before self-funding a FGM. It's common to go low overnight. I ate a small apple at 4 am this morning my Xdrip alarmed. My blood sugar was 3.7 so at least my alarm caught it. Welcome to our world. It doesn't qualify us for funding because of it. The criteria for funding are very specific and limited.

 

[EllieM]

Funding for Libres or Dexcoms because of hypo unawareness has this condition attached to it. Once you become hypo aware, theoretically the funding stops.

I don't even understand why he thought she wouldn't qualify as the reason she was able to limit amount of hypos during the nights is because of CGM and she still struggles with detecting lows in her sleep.

Sounds like she hasn't regained hypo awareness (at least at night) so hopefully the funding should continue.

I read another post by someone who said that they were told that their funding would be discontinued because their hba1c had gone up - the reason being that they had stopped having hospital inducing hypos.

I believe the diabetes.org.uk site has a diabetic /helpline. Try phoning them to see what they can do?
Call: 0345 123 2399, Monday to Friday, 9am to 6pm

Mind you, on the plus side, that letter doesn't actually say that the service will be removed....

Hopefully someone will post with better advice than mine.

 

[ert]

Sounds like she hasn't regained hypo awareness (at least at night) so hopefully the funding should continue..

For funding, they are concerned about hypo unawareness during the day, which is the criteria. My DN and specialist are not so worried about the night if you sleep through lower blood sugars. I personally worry about them.

 

[Rokaab]

For funding, they are concerned about hypo unawareness during the day, which is the criteria. My DN and specialist are not so worried about the night if you sleep through lower blood sugars. I personally worry about them.

For mine I got the funding for the upgrade to CGM sensors (to go with my pump) explicitly because I do not wake up for lows overnight - it now wakes me up with its alarms cos otherwise I would not (until much later), I do have hypo awareness through the day, so it may depend where you are are to what the qualifying reasons are.

Note: I was previously getting funding for the libre - but the Medtronic sensors are obviously more expensive

 

[adi_mrok]

For funding, they are concerned about hypo unawareness during the day, which is the criteria. My DN and specialist are not so worried about the night if you sleep through lower blood sugars. I personally worry about them.

Is there any document stating criterias available anywhere? I think overnight hypos are worse cause you can not wake up if it goes too low undedected whereas when you are awake you can feel something is wrong??

 

[Andydragon]

Is there any document stating criterias available anywhere? I think overnight hypos are worse cause you can not wake up if it goes too low undedected whereas when you are awake you can feel something is wrong??

https://www.nhs.uk/conditions/type-1-diabetes/continuous-glucose-monitoring-cgms/

leads to: https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring#flash

 

[oldgreymare]

Pragmatically my understanding of the background to the NHS NICE guidelines re CGMs unfortunately came about due to early adoption approach by the NHS from 2000, but these pioneer CGMs were difficult to use and still required very well informed diabetes control approach. I gather the NHS just didn't achieve enough Type 1 patients significantly improving their BG control to justify the cost of providing CGMs routinely, and so now mostly prioritising T1 children followed by severe hypo unawareness.

Definitely frustrating as the latest CGMs are so much more advanced than those early models. Weirdly, although hard, it now appears easier to qualify for a pump on the NHS than a CGM. I take my hat off to anyone who can fine tune their pump control WITHOUT CGM input.

 

[ert]

Is there any document stating criterias available anywhere? I think overnight hypos are worse cause you can not wake up if it goes too low undedected whereas when you are awake you can feel something is wrong??

My specialist says you are hypo aware, you will wake up overnight if your blood sugar is too low. So low on a FGM and asleep is ok. If you are hypo unaware, that's when sleeping is dangerous. This is what they fund for.

Myself, I'm scared of hypos. I wouldn't manage without a FGM.
https://www.diabetes.org.uk/guide-to-diabetes/complications/hypos/hypo-unawareness

 

[oldgreymare]

My specialist says you are hypo aware, you will wake up overnight if your blood sugar is too low. So low on a FGM and asleep is ok. If you are hypo unaware, that's when sleeping is dangerous. This is what they fund for.

Myself, I'm scared of hypos. I wouldn't manage without a FGM.
https://www.diabetes.org.uk/guide-to-diabetes/complications/hypos/hypo-unawareness

hi @ert - I'm hypo aware when awake, but only since using a CGM have I noticed when I go hypo when asleep - if I don't wake up to the alarm, I'll only suspect overnight hypos if I have a bad headache and generally feel hung over when I do wake up. I suffer from DP and FOF, so to date this has "rescued" me...but would prefer not to go severely low in the first place..

 

[Rokaab]

My specialist says you are hypo aware, you will wake up overnight if your blood sugar is too low. So low on a FGM and asleep is ok. If you are hypo unaware, that's when sleeping is dangerous. This is what they fund for.

hi @ert - I'm hypo aware when awake, but only since using a CGM have I noticed when I go hypo when asleep - if I don't wake up to the alarm, I'll only suspect overnight hypos if I have a bad headache and generally feel hung over when I do wake up.

I'm very similar, my CGM now wakes me up when I hit 3.8 (and going down - blood tests confirm its pretty accurate) rather than me sleeping straight through it and feeling groggy in the morning. It does so about once a week between 1:30am and 2am (semi-predictable - I know the time, just dont know which day)

But yes I also have hypo awareness through the day, just not at night unless my hypo symptom for the day is excessive sweating (waking up at 2.0/2.2 drenched in cold sweat was not fun)

And due to my lack of hypo awareness overnight (only overnight) and my tendency to go hypo on random nights I got upgraded from a libre to full CGM, so some CCG's/consultants can do it just on overnight hypo awareness - 'can' being the relevant word of course

 

[ert]

I'm very similar, my CGM now wakes me up when I hit 3.8 (and going down - blood tests confirm its pretty accurate) rather than me sleeping straight through it and feeling groggy in the morning. It does so about once a week between 1:30am and 2am (semi-predictable - I know the time, just dont know which day)

But yes I also have hypo awareness through the day, just not at night unless my hypo symptom for the day is excessive sweating (waking up at 2.0/2.2 drenched in cold sweat was not fun)

And due to my lack of hypo awareness overnight (only overnight) and my tendency to go hypo on random nights I got upgraded from a libre to full CGM, so some CCG's/consultants can do it just on overnight hypo awareness - 'can' being the relevant word of course

It seems to be at a consultant's call then. I don't know what the cut off is but I wake up at 3 mmo/l sweating and that was judged normal. 2 is pretty scary low.

 

[becca59]

It seems to be at a consultant's call then. I don't know what the cut off is but I wake up at 3 mmo/l sweating and that was judged normal. 2 is pretty scary low.

Sounds completely bonkers! Strikes me as trying to manipulate the criteria as a cost cutting exercise.

 

[EllieM]

My DN and specialist are not so worried about the night if you sleep through lower blood sugars. I personally worry about them.

Definitely. I lost hypo awareness when pregnant and had at least one night time episode where my husband had to call an ambulance - he thought I was dead. (This was pre cgms, our tech upgrade was for us to get mobile phones so my husband could phone me from work and check I was conscious...).

 

[EllieM]

Sounds completely bonkers! Strikes me as trying to manipulate the criteria as a cost cutting exercise.

Yes and no. I suspect the issue here is that a lot more long term diabetics than you'd think have hypos down to 3ish at night. Before cgms we just never knew about it. I can function at 3 , not well enough to drive or use machinery, but then if I'm lying in bed I'm not doing that. I think you have to go down to the low or mid 2s before you start having seizures (yes, I've done that). So if you have a hypo that doesn't need medical attention and maybe wakes you with a headache in the morning, is any harm done? On an NHS cost counting basis, maybe not. Certainly not while they are only willing to fund cgms for 20% of T1s.

Now I'm lucky that I have the finances to afford a cgm, and I would hate to have to cope without it, particularly if I lived alone.

Weirdly, although hard, it now appears easier to qualify for a pump on the NHS than a CGM. I take my hat off to anyone who can fine tune their pump control WITHOUT CGM input.

That is strange. I'd imagine that you'd need to do a blood test before you changed any of your pump settings so the glucometer strips would probably cost more than the cgm. Plus surely a pump costs more than a cgm?

What happens to kids on cgms and pumps when they turn 18 or 21? Does funding get removed?