# Approval of a CGM



## MikeyBikey (May 18, 2022)

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......


----------



## Paulbreen (May 18, 2022)

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


----------



## BadaBing (May 18, 2022)

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



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.


----------



## Bruce Stephens (May 18, 2022)

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,


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.)


----------



## rayray119 (May 18, 2022)

looks intersting but couldn't really do it well out and about.


----------



## rayray119 (May 18, 2022)

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.)


evening though gudelines say offer a choice


----------



## BadaBing (May 18, 2022)

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.


----------



## Bruce Stephens (May 18, 2022)

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.


Partha Kar


----------



## Rob Oldfield (May 18, 2022)

Bruce Stephens said:


> Partha Kar


Wow.  He sounds like an extremely good man to have at the top.


----------



## BadaBing (May 18, 2022)

Rob Oldfield said:


> Wow.  He sounds like an extremely good man to have at the top.


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.


----------



## trophywench (May 18, 2022)

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 !.


----------



## MikeyBikey (May 19, 2022)

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 !.



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 (May 19, 2022)

Bruce Stephens said:


> Partha Kar



Really useful, thank you!


----------



## BadaBing (May 19, 2022)

MikeyBikey said:


> Really useful, thank you!


Good luck MikeyBikey!


----------



## Pumper_Sue (May 19, 2022)

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......


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


----------



## helli (May 19, 2022)

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.


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?


----------



## Pumper_Sue (May 19, 2022)

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.


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.


----------



## MikeyBikey (May 19, 2022)

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.



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!"


----------



## Rob Oldfield (May 19, 2022)

Partha Kar tweeted earlier today....

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


----------



## Bruce Stephens (May 19, 2022)

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.


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.


----------



## helli (May 19, 2022)

MikeyBikey said:


> 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!"


Sorry, I did not mean to insult you or question your ability to get the most out of a CGM. 
My comment was a generic one - like you, I am an engineer so analysing numbers comes naturally to me. This is not true for everyone. Unfortunately, I have read of people who scan because their consultant tells them but do no more with the incredible amount of data they have to hand. 
Your history and ability to manage Type 1 diabetes for over half a century is amazing. 
Please forgive me if my comment was insensitive. That was never my intention.


----------



## helli (May 19, 2022)

Pumper_Sue said:


> 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.


Anyone who can scan a Libre but does nothing with the data they gain from it, is a waste of money.
Not everyone needs a medical professional to explain how to interpret the numbers, adjust their insulin doses and timing accordingly, understand when to treat a predicted high or low, appreciate it has limitations... but I have read of some that "just scan because my consultant told me to" and make no changes to their treatment.

The level of training required varies and could be something online. Some people do struggle to read and understand the instructions - you only have to read some of the requests for help on the forum - but being able to read the instructions on how to insert and scan a sensor is less than half of the story.
Those who need additional training or struggle to understand the instructions that come out of the box, are not stupid - they think differently to the manufacturer.

When the Libre was first released, I was asked to write a blog about it. I described scanning it and using it just to replace finger pricks was like having a smart phone and only using it to make phone call - you are wasting 90% of the value.


----------



## BadaBing (May 19, 2022)

Bruce Stephens said:


> 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.


Hello MikeyBikey 

I agree wholeheartedly with Bruce, if you can please do try and get in touch with Professor Kar. I may be proved wrong, but he does seem both responsive and keen to "encourage" his fellow diabetologists/ccgs to do the right thing by their patients with flashgms/cgms.


----------



## BadaBing (May 19, 2022)

I remember being one of the first people lucky enough to be asked to participate in the UK in clinical trials in 2014 for the original Libre. 

Before I took part in the trials I always thought "there must be a better way to manage this disease than by pricking one's finger randomly at random times of the day and night and not knowing how one's sugars were trending."

It was SO great not to have to rely on random fingerpricks. To give my fingertips a rest from piercing incessantly the tops of my fingers. To get a proper sense of when my sugars were too high or too low, what different foods and insulin were doing to my glucose levels day and night, how moderate or intense exercise affects my sugars and how to keep as best I can my glucose within a target range pre and post meals.

I'm not a scientist, but I can recognise patterns and trends in data (or evidence as people in my walk of life refer to it) and act accordingly.

And if little old, barely numerate, old me can do so, anyone can.

Or those who care for eligible diabetics who may have challenges interpreting the data, can do so.


----------



## Pumper_Sue (May 19, 2022)

helli said:


> Anyone who can scan a Libre but does nothing with the data they gain from it, is a waste of money.


That is not what you implied.


----------



## BadaBing (May 19, 2022)

Pumper_Sue said:


> 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.



Hello Pumper_Sue

I would give anything to be able to say my HbA1c was consistently as low as yours. I salute you!

And I must try harder!


----------



## MikeyBikey (May 19, 2022)

helli said:


> Sorry, I did not mean to insult you or question your ability to get the most out of a CGM.
> My comment was a generic one - like you, I am an engineer so analysing numbers comes naturally to me. This is not true for everyone. Unfortunately, I have read of people who scan because their consultant tells them but do no more with the incredible amount of data they have to hand.
> Your history and ability to manage Type 1 diabetes for over half a century is amazing.
> Please forgive me if my comment was insensitive. That was never my intention.



Apology accepted. Yes, I have encountered people who faithfully record their BGs but never change anything even if the results are well out of range.


----------



## helli (May 19, 2022)

Pumper_Sue said:


> That is not what you implied.


It is not what you read but please don’t tell me what I meant by my words.


----------

