Approval of a CGM

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MikeyBikey

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Relationship to Diabetes
Type 1
I am still struggling to get approved for CGM. Type I for sixty odd years and I just get endlrss excuses like "You are not on a pump"(So eff'ing what), "You are on animal insulin" (What's that got to do with it?), "You need to be doing 8 tests a day" (Well GP will only prescribe enough for 6!), etc.

When I had my amputation the consultants on the ward were surprised I wasn't on CGM. I did have a face-to-face with in the diabetes clinic but unfortunately not my usual consultant. She said she would refer to my usual consultant. As a pensioner on a low income I cannot self fund! Having lived pre disposables, pre meters, minus a leg I deserve a break!

On and on and on and......
 
Wow Mikey I thought I was a long-termer at 40 odd years, my hat goes off to you sir. I would ping the guys here to help you with advice how to jump through the right hoops to get you a Libre prescription,
I cant see what kind of treatment you are on, Animal or Analog shouldn't make any difference to how you BG behaves. I would start pestering everyone GP, diabetes team MP and whoever you can think off every day until they get you sorted, you are right you do deserve a break!! best of luck with it
 
Paulbreen said:
Wow Mikey I thought I was a long-termer at 40 odd years, my hat goes off to you sir. I would ping the guys here to help you with advice how to jump through the right hoops to get you a Libre prescription,
I cant see what kind of treatment you are on, Animal or Analog shouldn't make any difference to how you BG behaves. I would start pestering everyone GP, diabetes team MP and whoever you can think off every day until they get you sorted, you are right you do deserve a break!! best of luck with it
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Well said Paul!

If MikeyBikey isn't meant to be an intended beneficiary of the updated 1 April 2022 NICE guidelines on giving patients real time or flash glucose monitors, based on the patient's individual characteristics, needs and preferences, then those guidelines really aren't worth the paper they are written on.
 
Paulbreen said:
I would ping the guys here to help you with advice how to jump through the right hoops to get you a Libre prescription,
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It ought to be easy now that the NICE guidelines have changed. But then getting Libre prescribed should have been fairly easy for months now.

Getting something other than Libre 2 is still likely to be challenging for a while (for adults), though I imagine people already on a pump might get a suitable CGM if they can connect. (I'm guessing, but that would fit with the clear intent of the guidelines and the direction of travel towards supporting closed looping of various degrees.)
 
looks intersting but couldn't really do it well out and about.
 
Bruce Stephens said:
It ought to be easy now that the NICE guidelines have changed. But then getting Libre prescribed should have been fairly easy for months now.

Getting something other than Libre 2 is still likely to be challenging for a while (for adults), though I imagine people already on a pump might get a suitable CGM if they can connect. (I'm guessing, but that would fit with the clear intent of the guidelines and the direction of travel towards supporting closed looping of various degrees.)
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evening though gudelines say offer a choice
 
I was listening to an online diabetes community chat on twitter on Monday. The interviewers' guest was the NHS England co-lead for diabetes/diabetes technology. He was one of the protagonists instrumental in getting the NICE guidelines updated.

If I understood him correctly he was saying that - notwithstanding the evidence presented to NICE that cgms/flashgms improve significantly diabetics' ability to better manage their sugars and minimise in the medium/long term complications and improve quality of life - there are still pockets of resistance around the country from clinicians hesistant or reluctant to do the right thing for their patients by letting those patients have the technology necessary to better manage their diabetes.

He said much of that hesitance/reluctance stems from not understanding properly the changes made and the evidence base behind it; the belief that clinicians don't have sufficient staff to cope with demand; and of course the dreaded "if we prescribe this it will open the floodgates and eat into our budgets."

He said he believes the budget is there and that should not be used as an excuse.

He said that if someone is a T1, or a T2 on multidose insulin pricking their fingers at least eight times a day, in light of the new NICE guidelines, no one in these cohorts should be refused a flash glucose monitor and one's GP ought to be prescribing that as a bare minimum because there is nothing to stop the GP doing so.

He indicated that if diabetic patients believed they should be getting access to at least a flash glucose monitor but were finding their clinicians were refusing or stonewalling, he would be happy to contact the clinicians/ccgs concerned, explain to them the changes that have been made and the evidence for those changes and "encourage" them to do the right thing by their patients. He said he sees that as part of his role as NHS England diabetes co-lead.
 
BadaBing said:
He indicated that if diabetic patients believed they should be getting access to at least a flash glucose monitor but were finding their clinicians were refusing or stonewalling, he would be happy to contact the clinicians/ccgs concerned, explain to them the changes that have been made and the evidence for those changes and "encourage" them to do the right thing by their patients. He said he sees that as part of his role as NHS England diabetes co-lead.
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Partha Kar
 
Rob Oldfield said:
Wow. He sounds like an extremely good man to have at the top.
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Indeed! He said he is merely doing his job, but he seems (to me at least) to really care that patients in his area of specialism get the most up-to-date tools available to self-manage our condition, based on the evidence.

Above all he really "gets" that - unlike any other medical condition I can think of - 98% of the time diabetics are left completely on our own to self-manage this health condition. And one cannot do that properly any more using tools from the last century.
 
I think @MikeyBikey needs to contact PALS at his hospital, complain about lack of help from that consultant and request his care to be transferred to a different one who understands the current NICE Guideline fully and doesn't blame the CCG for their own failings !.
 
trophywench said:
I think @MikeyBikey needs to contact PALS at his hospital, complain about lack of help from that consultant and request his care to be transferred to a different one who understands the current NICE Guideline fully and doesn't blame the CCG for their own failings !.
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I need to contact my main consultant as I only switched to her, and nee Health Trust, early in the pandemic. The previous one was totally negative about CGM and seemed ittirated I was on porcine insulin when I lose hypo warnings on synthetics. I am reluctant to use PALS as past experience shower them to be as effective as chocolate fireguards!
 
MikeyBikey said:
I am still struggling to get approved for CGM. Type I for sixty odd years and I just get endlrss excuses like "You are not on a pump"(So eff'ing what), "You are on animal insulin" (What's that got to do with it?), "You need to be doing 8 tests a day" (Well GP will only prescribe enough for 6!), etc.

When I had my amputation the consultants on the ward were surprised I wasn't on CGM. I did have a face-to-face with in the diabetes clinic but unfortunately not my usual consultant. She said she would refer to my usual consultant. As a pensioner on a low income I cannot self fund! Having lived pre disposables, pre meters, minus a leg I deserve a break!

On and on and on and......
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Hi Mike,
you are entitled to CGM or a Libre it doesn't matter what age you are or what type of insulin you use either.

How about really upsetting the system and ask for a pump the result will be interesting to say the least.
You will even be quoted facts (in their eyes) that animal insulin can not be used in a pump.
It can as pumps were in use before synthetic insulins came in.
I used bovine neutral for many years in my pump.

Well done on the odd 60 years of type 1 :D
 
Pumper_Sue said:
you are entitled to CGM or a Libre it doesn't matter what age you are or what type of insulin you use either.
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Where is this "entitlement" you talk of?
The guidelines recommend CGMs but that is different.

I fully support Mike and all other people with Type 1 to have training for CGMs and, if they are able to gain value from them, prescriptions. But this is not the same as an entitlement and the cost is greater than just adding them to a prescription. Any technology for someone who has no training and does not know how to use it is a complete waste of money.

@MikeyBikey have you tried writing to your MP? As my MP is not in government, she seems to take great delight in contacting ministers on my behalf.
Is it worth registering for the free Libre trial so you can show the evidence of two weeks of data to your consultant?
 
helli said:
I fully support Mike and all other people with Type 1 to have training for CGMs and, if they are able to gain value from them, prescriptions. But this is not the same as an entitlement and the cost is greater than just adding them to a prescription. Any technology for someone who has no training and does not know how to use it is a complete waste of money.
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So in that context anyone who can read and follow instructions and can use a CGM without any input from the medical profession is a waste of money.

Please do give people the credit for being able to think and act without someone having to hold their hand all day long.

I set my pump up alone after it was sent to me from the USA had no input from any so called professional, self funded the lot same with the CGM, which is now funded by a charity and I maintain a HbA1c of anything between 5.9 and 6.5 and have done so for at least 15 - 20 years. Yes all my own work with no input except from myself.
 
helli said:
I fully support Mike and all other people with Type 1 to have training for CGMs and, if they are able to gain value from them, prescriptions. But this is not the same as an entitlement and the cost is greater than just adding them to a prescription. Any technology for someone who has no training and does not know how to use it is a complete waste of money.
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Sorry but personally I find this slightly insulting. I have had to manage my diabetes for well over half a century - initially with urine tests and then increasingly with BG tests. Initially I had to buy my own meter at vast expense at the time and supplement the syrups as the clinic would only prescribe 25 or 50 for six months! I also have three science/engineering based degrees at various levels so I am sure once shown how to set things up I could gain immediate benefit. Two years ago ut was suggested I do BERTIE on line. To my consults surprise I went straight to the tests and scored 90 - 100% on each section! I did go through it afterwards though. When I told the consultant her response was "Wow!"
 
Partha Kar tweeted earlier today....

(Note....not sure how a screen grab is going to come out here.... fingers crossed this will work.)

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helli said:
@MikeyBikey have you tried writing to your MP? As my MP is not in government, she seems to take great delight in contacting ministers on my behalf.
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I suspect it will be much faster and just as effective just to contact Partha Kar. He's reported sending emails to consultants all over the country encouraging them to prescribe Libre in exactly this kind of situation, and encouragement from within the NHS from a peer feels much more likely to work quickly.
 
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