Has anyone got CGM funded?

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Natasha23184

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Hi, I'm Tazza, type 1 for 34 years. Been on a pump for the last 8 years and enjoyed all the benefits. However.....

Had a very bad hypo about 2 weeks ago that led to a seizure in the middle of the night - OH was panicked and called an ambulance - I had come round when they arrived and was eating jelly babies.


Been to see my diabetic team who have put me on a Guardian CGM for a week gut this is mainly to ensure I am safe to drive.

Anyway...

I am now bricking it about this happening again so am looking into CGM with alarms to wake me up if I hypo again at night.
Apparently my only option is to self fund - which I'm not sure I can afford. I'm pretty convinced that Medtronic system (pump and cgm working in unison) would ease my mind.

Just wondered if anyone has had any success in this area.
 
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Natasha23184

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Just wanted to add, there was no obvious cause for this hypo - had been out for a meal and blood sugar rose a little and was corrected via the pump but was fine before I went to bed.
 
TheBigNewt

TheBigNewt

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Don't use CGM but what I understand is your NHS will fund the Abbot Libre device sometimes, but it doesn't alert you when you're low, which is why I always thought it was inferior to the Dexcom which does alert you (and others, like a kid's parent at night). The Dexcom's the only one available in the US until very recently. Reading threads here it's way better overall than the Libre, but probably costs a bit more.
 
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Natasha23184

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TheBigNewt said:
Don't use CGM but what I understand is your NHS will fund the Abbot Libre device sometimes, but it doesn't alert you when you're low, which is why I always thought it was inferior to the Dexcom which does alert you (and others, like a kid's parent at night). The Dexcom's the only one available in the US until very recently. Reading threads here it's way better overall than the Libre, but probably costs a bit more.
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Thanks for your reply. I'm not interested in the Libre for the exact reason you mention. Even though this is purportedly available on the NHS, my area hasn't funded anyone even for this!
 
catapillar

catapillar

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@Natasha23184 my dexcom is currently funded, but I'm not really sure how it is funded - I think directly by the hospital while I'm on a clinical trial.

What is supposed to happen is your consultant endocrinologist decides you have a clinical need for CGM (there are nice guidelines on what constitutes clinical need for CGM, essentially hypo unawareness and frequent severe hypos) then your consultant makes an individual funding request to your CCG and the CCG decide whether or not to fund it.

It doesn't especially sound like one unusual sever hypo when you otherwise have good hypo awareness meets the clinical requirements. You might want to get in touch with input diabetes and they will assist with discussions with your consultant to see if you meet the nice guidelines.
 
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Sandra2928

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Natasha23184 said:
Just wanted to add, there was no obvious cause for this hypo - had been out for a meal and blood sugar rose a little and was corrected via the pump but was fine before I went to bedi.

Hi Natasha, I have a DEXCOM cgm that was funded through Medicare in the US. It is the only one here that is funded. That has to do with the fact that you can make treatment decisions with it. It is surprising to me of how accurate it is. You have to calibrate it 2 times a day. Today my readings have been no larger than 5 points away. It is very correct on which way my blood sugar is headed. I don't have to go low to be able to treat it. When it alarms, I know what to do to prevent it. I did have a low a week ago, due to me giving a bolus that was way out. (Holiday foods) I made the mistake of ignoring the alarms. I was in a very public place and didn't want to draw the attention toward me. I could have excused myself and gone to rhe rest room, but I had just come out of there. It was at a family celebration and my daughter in law would have followed me into her bathroom. I really didn't want a confrontation with her. I talked her father into getting a pump many years ago. He admits he would not be alive today without it. She hates that the pump gave him control back away from leaning on her. Oh well, a lesson learned! He is much healthier today. Her mother is now involved and they even eat healthier now. I have been type 1 for 35 years and have been on a pump for 35 years. I found about a pump right after my diagnosis and went on a pump then. It took changing from one endocrinologist to another, but was well worth it. The endocrinologist I have now suggested my cgm as soon as Medicare started approving them. It has been a really good decision for me. My only advise is go to all the websites and read about all of them. Let the companies that contact you know that you are not ready to place an order but would like all the info. Make the decision that is best for you. You may want to contact your insurance to see which cgm they cover the most and why. That decision was made easy for me as I wanted a cgm that would do the most for me. I have secondary insurance that paid the 20 percent that I would be responsible for. These things are expensive and the supplies that you need each month aren't cheap, either. Good luck getting whichever one you decide is best for you!!
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Natasha23184

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Hi Sandra, many thanks for your reply. I am in the UK where NHS funding for CGM is only available for the the Libre (no alarm) and it appears you have to be near death to get the Dexcom funded. Apparently Medtronic (who make the Guardian CGM system) aren't taking on any more customers due to unexpected demand. So I am left with self funding (no medical insurance system here as we have the NHS) which I can't really afford.
 
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Sandra2928

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Natasha23184 said:
No I think you are right - I don't meet the NICE guidelines. Thanks for replying
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put


Let your doctor know and see what he can provide as far as insurance payment. Does he download your meter or pump at your visits to him? I do not know the timeline,as far as the lows go, or how severe they have to be. I was very steady at checking my blood sugars and was told that if you check 4 or more times in 24 hours you qualified for a cgm. I do not know if both requirements have to be met, but my doctor wrote in her notes that I checked more than that. Your doctor will know how to qualify you for one. If you don't qualify for one today, he can tell you how to qualify in the next few months. I had the "1 bad low" also. Now, I really don't know how I did it without a cgm.
 
tim2000s

tim2000s

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Sandra2928 said:
put


Let your doctor know and see what he can provide as far as insurance payment. Does he download your meter or pump at your visits to him? I do not know the timeline,as far as the lows go, or how severe they have to be. I was very steady at checking my blood sugars and was told that if you check 4 or more times in 24 hours you qualified for a cgm. I do not know if both requirements have to be met, but my doctor wrote in her notes that I checked more than that. Your doctor will know how to qualify you for one. If you don't qualify for one today, he can tell you how to qualify in the next few months. I had the "1 bad low" also. Now, I really don't know how I did it without a cgm.
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Hi Sandra, the UK is rather different to the US - this is what you need to qualify for CGM here:

Consider real‑time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:

  • More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.

  • Complete loss of awareness of hypoglycaemia.

  • Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.

  • Extreme fear of hypoglycaemia.

  • Hyperglycaemia (HbA1c level of 75 mmol/mol [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real‑time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more. [new 2015]
In the UK, this also means you lose your driving license. I also don't know if you are aware, but the Libre has just been approved on Medicare.
 
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