Any t2 on libra?

Colliewobbles

Member
Messages
24
Type of diabetes
Type 2
Treatment type
Insulin
I think i am seething to put it politely and have emailed my local CCG to ask for a reason why.


I do not get warning signs when i go high or low.. i know when i go high as i am steroid induced t2, and even we i went into unconsciousness last year i felt fine till i got down to 2.1 .. was in hospital at time.

So when i was in hospital for high levels a couple months ago was really happy to hear i could have the libra was over the moon as NICE who do the meds have said we can.. but had appointment yesterday to see whether i could go on it.. well by end of appt i had steam coming out of ears to find out that NICE have said yes but funding has not bee sorted and they are inundated with T2 coming forward asking for it. However the funding is not in place yet..

Now this is the point that i dont get as 6 boxes of strips, currently, recently been on steroids and levels are still not back down, 27 a pack.. and 3 ketones at 20.. works out around 280 a month currently spending.. on strips when libra would cost 149.. so dont understand the funding part.. when it would save nhs roughly 130 a month.. even if i was down to 3 boxes and 2 of ketones still would be viable..

i am looking at buying it now privately as they are doing free trial.. the specialist said you have a lot of allergies which i do am anaphylactic but i cannot live life in fear i might be allergic to something.. The specialist was lovely and said i can understand why you feel this way as hes all for technology but our hands are tied.. so i have decided to contact the ccg and asked for their understanding why can i not have it when i am costing nhs more with monitor and strips.
 

In Response

Well-Known Member
Messages
3,373
Type of diabetes
Type 1
Treatment type
Pump
Unfortunately, I am not surprised.
When NICE bought in the criteria for T1s, it took my CCG 6 to find the budget.
NICE make the guidelines (and they are only guidelines) but it does not come with any extra budget for the CCGs to fund them.
It took my CCG 6 months to find the budget when the last guidelines were released regarding Type 1 criteria for Libre.

Keep pushing - I persevered and eventually got Libre.
In the meantime, as you say, get the free trial.

I strongly strongly advise you to learn about the limitations. For example, do not rely on any numbers from Libre higher than 9 and lower than 4. CGMs (and not just Libre) are not designed to work accurately at those levels.
 
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Colliewobbles

Member
Messages
24
Type of diabetes
Type 2
Treatment type
Insulin
Unfortunately, I am not surprised.
When NICE bought in the criteria for T1s, it took my CCG 6 to find the budget.
NICE make the guidelines (and they are only guidelines) but it does not come with any extra budget for the CCGs to fund them.
It took my CCG 6 months to find the budget when the last guidelines were released regarding Type 1 criteria for Libre.

Keep pushing - I persevered and eventually got Libre.
In the meantime, as you say, get the free trial.

I strongly strongly advise you to learn about the limitations. For example, do not rely on any numbers from Libre higher than 9 and lower than 4. CGMs (and not just Libre) are not designed to work accurately at those levels.
Ty i am taking on my CCG, Because they would be better off putting me on Libra so they dont have to find budget unless its something more complicated but i suppose they have to swop it around a few departs before.. what i have learnt is t2 will probably done by gps as he said no way can we deal with t2s coming on as well..
 

EllieM

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Staff Member
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9,208
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forum bugs
A quick google suggests that there are 400,000 T1s in UK and 900,000 T2s on insulin. Abbott will certainly have to ramp up the supplies to cover all of them, though am guessing that dexcom may also benefit. You've got to hope that people without hypo awareness, whether T1 or T2, should have priority...
 
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Colliewobbles

Member
Messages
24
Type of diabetes
Type 2
Treatment type
Insulin
A quick google suggests that there are 400,000 T1s in UK and 900,000 T2s on insulin. Abbott will certainly have to ramp up the supplies to cover all of them, though am guessing that dexcom may also benefit. You've got to hope that people without hypo awareness, whether T1 or T2, should have priority...
Yes i hope so, when i went unconscious last year i felt fine until the last seconds when i mumbled i need to sleep am tired.. and that was it out while they struggled to get me back..ended up drilling through my leg..
 

Nicki70

Well-Known Member
Messages
95
Type of diabetes
Type 2
Treatment type
Diet only
I have chemo induced peripheral neuropathy in my fingers (only finished chemo in February and diagnosed with diabetes type 2 in March. Currently in Humulin M3 and with the problems with my fingers I have asked my GP for Libre. I was given it in hospital when diagnosed. I appreciate finger pricking will still be required some times in addition but it does reduce the number of time. GP did not have a clue but wrote to the hospital consultant who sent me a copy of his response and he is recommending that I be given a Libre. Now waiting for GP to make their final decision.
 

Picsnbits

Newbie
Messages
1
Type of diabetes
Type 2
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Insulin
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My limitations
I think i am seething to put it politely and have emailed my local CCG to ask for a reason why.




Now this is the point that i dont get as 6 boxes of strips, currently, recently been on steroids and levels are still not back down, 27 a pack.. and 3 ketones at 20.. works out around 280 a month currently spending.. on strips when libra would cost 149.. so dont understand the funding part.. when it would save nhs roughly 130 a month.. even if i was down to 3 boxes and 2 of ketones still would be viable..


Hi Colliewobbles. For info, as a T2, I buy the Freestyle Libra 2 privately at a cost of £80 for two sensors. Each sensor lasts 14 days so two covers a NHS Month. I use my iPhone as a reader so don't need a reader from Abbott and can get lots of graphs and data on my computer through their free software. The £149 Libra cost is an Abbott sales pitch which I also fell for in the beginning - try to find a helpful pharmacy near you that will sell at or near the price the NHS pay him.
 

Nicki70

Well-Known Member
Messages
95
Type of diabetes
Type 2
Treatment type
Diet only
My Libre has been approved by my GP practice. They wrote to the consultant at the hospital who agreed I should be on it for at least the next year and then review. I got a copy of that letter and the next day GP rang today the practice had approved it on the advice from the consultant. I picked up my first two on prescription this week.