Which pump?!

[everydayupsanddowns]

Also had another chat re libre - unfortunately situation is still the same and I’ve been told currently the only way for me to get funded is to do 3 months of 8+ tests a day

This is ridiculous. but you can play them at their own silly game.

How many times do you usually check a day? Do I remember you saying it was 6 not 8? if so all you’d need to do would be to use 2 strips one after another for your checks at breakfast and before bed and hey presto, no more BG checks in terms of information overload, but the 2 additional strips used.

It’s silly, but then they are insisting on you putting a tick in a box for 3 months, rather than just agreeing that you are determined enough to do it and letting you access the tech (and saving the additional cost of the strips into the bargain!)

 

[Inka]

But then they’ll just change the rules of the (exceptionally silly) game It’s all about money and discouraging as many people as possible from getting a Libre. My area has the stupid 3 month rule too and insist you provide your meter and the 3 months of downloadable results so they can be ‘approved’. So consecutive tests wouldn’t count.

They didn’t used to have this rule. It used to be consultant-confirmed, then changed to one month, but still the naughty, silly people with diabetes kept getting Libres so that was changed to 3 months, then 3 months plus downloadable and ‘approved’. If that doesn’t put enough people off, no doubt they’ll change it to 6 months and start counting the holes in people’s fingers 🙄

 

[helli]

How many times do you usually check a day? Do I remember you saying it was 6 not 8? if so all you’d need to do would be to use 2 strips one after another for your checks at breakfast and before bed and hey presto, no more BG checks in terms of information overload, but the 2 additional strips used.

This would not have worked for me.
They were not counting strips used but looking at the results I uploaded into Diasend. Given they asked me a few questions, I am pretty convinced they looked at the numbers, when the tests were taken and what action I took in response to the tests.
Thankfully, they only asked for 1 month of data and I was testing more than 8 times a day anyway and there was no "information overload" problem for me ... if this is a concern it could be argued that Libre would add to it.

 

[everydayupsanddowns]

They were not counting strips used but looking at the results I uploaded into Diasend. Given they asked me a few questions, I am pretty convinced they looked at the numbers, when the tests were taken and what action I took in response to the tests.

But Grainger’s team only seem to be focussing on the numerical limit. There seems to be little ‘person-centred‘ or even ‘diabetes-centred‘ care going on. They seem to be imposing a simple numerical cut-off. Which I find infuriating.

If pressed one could say ‘I didn’t think the result matched how I was feeling so I felt I should double-check as advised in the meter handbook’ 🙂

And yes I am aware I am being slightly facetious, and this really isn’t an ideal solution (or one that @grainger is likely to actually take on) - but I suppose I don’t feel the clinic are acting fairly. And I am not sure who it is that is insisting that some numerical measure must be satisfied for 3months, before prescriptions can be approved.

If the clinic can see that @grainger has the right sort of diabetes management approach to benefit from Libre, and has enough desire to acquire access to the technology to commit to increasing testing frequency for 3 months in order to meet the criteria, I really don’t see the need of ’spending’ those strips and actually making @grainger go through the hassle of doing it. IMO it could be better decided on clinical grounds as to whether @grainger wold benefit. Hiding behind a numerical cut-off in order to refuse a good candidate just seems wrong.

At least grant a trial access, and then review in 6months as to whether it has worked and been of benefit as expected?

 

[grainger]

This is ridiculous. but you can play them at their own silly game.

How many times do you usually check a day? Do I remember you saying it was 6 not 8? if so all you’d need to do would be to use 2 strips one after another for your checks at breakfast and before bed and hey presto, no more BG checks in terms of information overload, but the 2 additional strips used.

It’s silly, but then they are insisting on you putting a tick in a box for 3 months, rather than just agreeing that you are determined enough to do it and letting you access the tech (and saving the additional cost of the strips into the bargain!)

It was 7 times a day I averaged unfortunately. I think if I stopped libre now it would be a lot more naturally as I’m doing 2/3 school pick ups a day which I have to do by car so I need to check before driving.
like the theory but I have to show the testing via download so I’m not sure to what extent they will go through it.
I did try the argument if I scan my libre on average 15 times a day but apparently that doesn’t make a difference.

 

[grainger]

But then they’ll just change the rules of the (exceptionally silly) game It’s all about money and discouraging as many people as possible from getting a Libre. My area has the stupid 3 month rule too and insist you provide your meter and the 3 months of downloadable results so they can be ‘approved’. So consecutive tests wouldn’t count.

They didn’t used to have this rule. It used to be consultant-confirmed, then changed to one month, but still the naughty, silly people with diabetes kept getting Libres so that was changed to 3 months, then 3 months plus downloadable and ‘approved’. If that doesn’t put enough people off, no doubt they’ll change it to 6 months and start counting the holes in people’s fingers 🙄

I have my consultant led yearly appointment in two weeks so I’m hoping to bring it up with them and see if there’s anything else I can do so fingers crossed. It does seem crazy that they are actively trying to say no to people.

 

[grovesy]

I have my consultant led yearly appointment in two weeks so I’m hoping to bring it up with them and see if there’s anything else I can do so fingers crossed. It does seem crazy that they are actively trying to say no to people.

You can only ask! I have everything crossed that you have a more positive response.

 

[grainger]

But Grainger’s team only seem to be focussing on the numerical limit. There seems to be little ‘person-centred‘ or even ‘diabetes-centred‘ care going on. They seem to be imposing a simple numerical cut-off. Which I find infuriating.

If pressed one could say ‘I didn’t think the result matched how I was feeling so I felt I should double-check as advised in the meter handbook’ 🙂

And yes I am aware I am being slightly facetious, and this really isn’t an ideal solution (or one that @grainger is likely to actually take on) - but I suppose I don’t feel the clinic are acting fairly. And I am not sure who it is that is insisting that some numerical measure must be satisfied for 3months, before prescriptions can be approved.

If the clinic can see that @grainger has the right sort of diabetes management approach to benefit from Libre, and has enough desire to acquire access to the technology to commit to increasing testing frequency for 3 months in order to meet the criteria, I really don’t see the need of ’spending’ those strips and actually making @grainger go through the hassle of doing it. IMO it could be better decided on clinical grounds as to whether @grainger wold benefit. Hiding behind a numerical cut-off in order to refuse a good candidate just seems wrong.

At least grant a trial access, and then review in 6months as to whether it has worked and been of benefit as expected?

I completely agree!! It’s beyond infuriating especially as I have 15 months of libre data showing I use it properly, scan regularly, and my hba1c has improved already.

will see what the consultant says in 2 weeks although I’ve just done my budgeting and it looks like I could finance the dexcom for a while if I go with the tslim so I may just do that until Cambridgeshire decide to play more fairly!
I will say this though - as far as Addenbrooks goes though their care was exceptional with my miscarriages and then pregnancy with my youngest and I’m certainly very grateful that I have been able to have a pump.

I’m very lucky to be able to finance myself for now and I need to remember to be grateful for that as frustrated as I am.

 

[Sally71]

It’s so silly isn’t it. We eventually got the Libre funded, but only after answering a barrage of questions over 2 or 3 phone calls. Our hospital is in a big city, but we live about 2 miles over the border in the neighbouring county. If we lived in the same county as the hospital, we'd have got them a lot easier without having the Spanish Inquisition first

 

[grovesy]

I completely agree!! It’s beyond infuriating especially as I have 15 months of libre data showing I use it properly, scan regularly, and my hba1c has improved already.

will see what the consultant says in 2 weeks although I’ve just done my budgeting and it looks like I could finance the dexcom for a while if I go with the tslim so I may just do that until Cambridgeshire decide to play more fairly!
I will say this though - as far as Addenbrooks goes though their care was exceptional with my miscarriages and then pregnancy with my youngest and I’m certainly very grateful that I have been able to have a pump.

I’m very lucky to be able to finance myself for now and I need to remember to be grateful for that as frustrated as I am.

I would have thought that Addenbrookes would have been more likely to supply!

 

[grainger]

I would have thought that Addenbrookes would have been more likely to supply!

I thought that too but nope. Pump choice is great but libres are like gold dust!

 

[helli]

My diabetes team are pretty open with me about their budget. I think they have to choose how much to spend on various tech such as Libre, CGMs, pumps, ... When Libre were first approved by NICE, their annual budget had already been approved so it was incredibly challenging to get a Libre.
Now they have opted to be a little more relaxed than others with Libre but that means they are not overly generous with pumps (e.g. OmniPod is too expensive). I have noticed that Libre is offered as "an alternative to pumps" for those not currently pumping but my personal experience is that it is not taken away if a pump is deemed to be required.
Sounds like Addenbrookes have chosen to spend their budget differently.

 

[JohnP21]

I believe the “alternative to pumps” is a very misleading statement. I am tempted to say is is marketing ploy, but I am not an expert. I have a pump but also use libre which is useful in monitoring basal rates and food versus boluses, The sensor that can be linked to my pump is deemed too expensive.
Mind you, if the sensors are not accurate, then closed loop systems are problematic.

 

[everydayupsanddowns]

as I have 15 months of libre data showing I use it properly, scan regularly, and my hba1c has improved already.

Which is ONE OF THE NHS ENGLAND MANDATORY CRITERIA!!

 

[everydayupsanddowns]

Sounds like Addenbrookes have chosen to spend their budget differently.

I don’t thing that’s the way it works any longer?

Funding for Libre is different now because of the postcode lottery that had developed after theoretical approval ‘subject to local healthcare economy’ in 2017. Funding for Libre is now ‘top sliced’ directly from the CCG budget and the only way they can get it back is to prescribe to the approx 25% of T1s who should meet the national criteria. And 25% is supposed to be the minimum as I understand it.

 

[grainger]

Which is ONE OF THE NHS ENGLAND MANDATORY CRITERIA!!

I love how frustrated you are on my behalf! Thank you🙂

I’m not one to quit so I’ll keep fighting my corner

 

[everydayupsanddowns]

I love how frustrated you are on my behalf! Thank you🙂

I just know that a *lot* of work went into this, exactly in order to prevent this kind if silliness. And yet... here we are!

 

[grainger]

Decisión made! Tandem tslim it is. Should receive in a couple of weeks as they are waiting for control iq to come into stock.

after much chat with my other half we’ve also decided that I’ll self fund the dexcom so this should be an exciting new chapter.

i still have a consultant appointment next week where I will argue for the libre once again but for now just a new pump and less money to look forward to

 

[grovesy]

Decisión made! Tandem tslim it is. Should receive in a couple of weeks as they are waiting for control iq to come into stock.

after much chat with my other half we’ve also decided that I’ll self fund the dexcom so this should be an exciting new chapter.

i still have a consultant appointment next week where I will argue for the libre once again but for now just a new pump and less money to look forward to

Hope you get on well with it.

 

[trophywench]

I hope you do too!