Any ideas?

grainger

Well-Known Member
Relationship to Diabetes
Type 1
Hey all

Hope you are all good. I’m after some advice...
So about 18 months ago I didn’t qualify for a libre so 14 months ago I decided to self fund. I love it and my hba1c has improved, quality of life etc all better and works brilliantly with the exercise I do etc...

Anyway, I’m trying to get it prescribed now but being told that as I didn’t qualify before I started self funding I just don’t qualify. Other than stopping and doing 8 tests a day for 3 months I’ve no idea where to go from here...

Anyone been in this situation and been successful?

Thanks
 

Ljc

Well-Known Member
Relationship to Diabetes
Type 2
You could try contacting our helpline 03451232399..
I am pretty sure I have read posts on here where people have self funded a Libre then been successful in having it prescribed. I don’t recall reading anything in the NICE. Guideline where self funders are disqualified from having Libre prescribed.
Personally I would think that your improved control etc since using the Libre shoud be all the proof you need.
Perhaps @everydayupsanddowns can help.

I hope you are successful in your fight.
 

grovesy

Well-Known Member
Relationship to Diabetes
Type 2
You could try contacting our helpline 03451232399..
I am pretty sure I have read posts on here where people have self funded a Libre then been successful in having it prescribed. I don’t recall reading anything in the NICE. Guideline where self funders are disqualified from having Libre prescribed.
Personally I would think that your improved control etc since using the Libre shoud be all the proof you need.
Perhaps @everydayupsanddowns can help.

I hope you are successful in your fight.
I agree , I too have not seen that self funding stops you been eligible. I would have thought as you have reduced your HBA1C that should go in your favour.
Have you looked at your CCG criteria for prescribing.
 

Robin

Well-Known Member
Relationship to Diabetes
Type 1
Anyway, I’m trying to get it prescribed now but being told that as I didn’t qualify before I started self funding I just don’t qualify. Other than stopping and doing 8 tests a day for 3 months I’ve no idea where to go from here...
I agree , I too have not seen that self funding stops you been eligible.
I think there’s a little phrase in the NICE guidelines, when they added the bit about self funders being eligible, that you would have been eligible under current rules had you been prescribed it at the time.
This is taken from the JDRF website, I can’t find the NICE guidelines on a quick Google.
5. Previous self-funders of Flash Glucose Monitors with type 1 diabeteswhere those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since self funding.
 

grainger

Well-Known Member
Relationship to Diabetes
Type 1
I think there’s a little phrase in the NICE guidelines, when they added the bit about self funders being eligible, that you would have been eligible under current rules had you been prescribed it at the time.
This is taken from the JDRF website, I can’t find the NICE guidelines on a quick Google.
5. Previous self-funders of Flash Glucose Monitors with type 1 diabeteswhere those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since self funding.
Unfortunately I started self funding in June 2019 so I don’t count under this. And because I didn’t meet the 8x per day (my average was 7) I didn’t qualify.
 

grainger

Well-Known Member
Relationship to Diabetes
Type 1
I agree , I too have not seen that self funding stops you been eligible. I would have thought as you have reduced your HBA1C that should go in your favour.
Have you looked at your CCG criteria for prescribing.
Unfortunately there’s nothing about people who started self funding post April 2019.
 

grainger

Well-Known Member
Relationship to Diabetes
Type 1
I’ll
You could try contacting our helpline 03451232399..
I am pretty sure I have read posts on here where people have self funded a Libre then been successful in having it prescribed. I don’t recall reading anything in the NICE. Guideline where self funders are disqualified from having Libre prescribed.
Personally I would think that your improved control etc since using the Libre shoud be all the proof you need.
Perhaps @everydayupsanddowns can help.

I hope you are successful in your fight.
I’ll give them a call thank you.
 
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LucyDUK

Administrator
Staff member
Relationship to Diabetes
Parent
Are you in England? If so then one of the criteria for eligibility is:
  • You have Type 1 and have previously paid for Flash and can show it has improved your HbA1c.
So would seem to me that you do qualify.

More details including info about other nations can be found here: https://www.diabetes.org.uk/guide-t...our-diabetes/testing/flash-glucose-monitoring - you could always direct your team to this link too if there’s any further uncertainty.
 

grainger

Well-Known Member
Relationship to Diabetes
Type 1
Are you in England? If so then one of the criteria for eligibility is:
  • You have Type 1 and have previously paid for Flash and can show it has improved your HbA1c.
So would seem to me that you do qualify.

More details including info about other nations can be found here: https://www.diabetes.org.uk/guide-t...our-diabetes/testing/flash-glucose-monitoring - you could always direct your team to this link too if there’s any further uncertainty.
I am. I’ve just emailed my DSN again to ask about this and attached the link so fingers crossed. Thank you
 

Ljc

Well-Known Member
Relationship to Diabetes
Type 2
I am. I’ve just emailed my DSN again to ask about this and attached the link so fingers crossed. Thank you
I will keep everything crossed for you. My Libre has been a game changer for me.
 

grainger

Well-Known Member
Relationship to Diabetes
Type 1
I will keep everything crossed for you. My Libre has been a game changer for me.
Thanks! I love it, I just can’t self fund forever - it’s an expensive game.
 

Ljc

Well-Known Member
Relationship to Diabetes
Type 2

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
How frustrating for you @grainger!

Yes I was also under the impression that if you can demonstrate that self-funding has shown benefit, you should qualify.

I think in part if boils down to the mindset of the HCP (and to some extent the CCG). The NHS England Libre Criteria are mandatory, but they do require interpretation, and it’s clear that some areas have far more people on Libre under the same guidelines than others!
 

grainger

Well-Known Member
Relationship to Diabetes
Type 1
So this is the response today:



Chatted to a colleague. Cambridgeshire do not include in their criteria - HbA1c improves after self funding libre as it would not be fair on those who cannot fund it themselves in the first place. This is making it fair for everyone to have equal access. Hopefully that makes sense?

So looks like I’m stuck between rock and hard place. I either stop self funding and do 3 months of testing minimum 8 times a day or I stay self funding?? Any ideas if there’s anything else I can try?
Thanks!!
 

grainger

Well-Known Member
Relationship to Diabetes
Type 1
How frustrating for you @grainger!

Yes I was also under the impression that if you can demonstrate that self-funding has shown benefit, you should qualify.

I think in part if boils down to the mindset of the HCP (and to some extent the CCG). The NHS England Libre Criteria are mandatory, but they do require interpretation, and it’s clear that some areas have far more people on Libre under the same guidelines than others!
frustrated is an understatement right now - I feel like I’m being penalised for trying to look after myself:(
 

LucyDUK

Administrator
Staff member
Relationship to Diabetes
Parent
Hopefully that makes sense?
No it doesn’t really does it. How infuriating.

I would suggest getting in touch with your local DUK office to see if they can advise or raise the issue with their contacts at the CCG - @Hannah Diabetes UK @Robert Diabetes UK, could either of you provide details of the regional team covering Cambridgeshire?

In the meantime can you afford to continue self funding, but also begin testing 8 times a day? At least that way you will begin to satisfy their criteria but also not miss out on the Libre data (they don’t need to know you’re still funding, if it would prevent a big enough strip prescription).
 

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
Cambridgeshire do not include in their criteria
Cambridgeshire aren’t supposed to have their own criteria. There is one national and mandatory set of criteria... And that is it!

It makes absolutely no sense to force you to stop using a piece of technology that you can clearly demonstrate is helping you, and increase your SMBG frequency for 4 months, simply to put a tick in their box (which shouldnt exist in the first place!)

Would you be able to have that conversation with them?

Do they know younare determined, and perfectly willing to play their game if that’s what it takes?

Would they just be able to simply ‘imagine’ you have gone away and done the 4 months and save you the bother, potential worsening of BG management oitcomes, and the cost of the extra test strips??
 

grainger

Well-Known Member
Relationship to Diabetes
Type 1
Cambridgeshire aren’t supposed to have their own criteria. There is one national and mandatory set of criteria... And that is it!

It makes absolutely no sense to force you to stop using a piece of technology that you can clearly demonstrate is helping you, and increase your SMBG frequency for 4 months, simply to put a tick in their box (which shouldnt exist in the first place!)

Would you be able to have that conversation with them?

Do they know younare determined, and perfectly willing to play their game if that’s what it takes?

Would they just be able to simply ‘imagine’ you have gone away and done the 4 months and save you the bother, potential worsening of BG management oitcomes, and the cost of the extra test strips??
Its maddening. I’m going to keep trying to talk to them. I’m also preparing to start testing again via finger pricks but in honesty I’m dreading it - I haven’t had to deal with any needles etc near my kids for the last year.

I guess though ifthey are saying no then there’s not much else I can do. Makes me want to cry!
 

Hannah Diabetes UK

Moderator
Staff member
No it doesn’t really does it. How infuriating.

I would suggest getting in touch with your local DUK office to see if they can advise or raise the issue with their contacts at the CCG - @Hannah Diabetes UK @Robert Diabetes UK, could either of you provide details of the regional team covering Cambridgeshire?

In the meantime can you afford to continue self funding, but also begin testing 8 times a day? At least that way you will begin to satisfy their criteria but also not miss out on the Libre data (they don’t need to know you’re still funding, if it would prevent a big enough strip prescription).
Hi @grainger ,

I am sorry to hear about your recent struggles and having to self fund, the best thing to do would be to drop us an email, probably best to our central inbox as this is being checked daily. The email is helpline@diabetes.org.uk or alternatively you can give us a call on 0345 123 2399 ( lines are open Monday- Friday,9am-6pm) If you could provide some contact information and we can pass it on to the relevant team to get some more information back to you soon as we can.

Thanks,

Hannah
 
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