Good news for Libre users, I think

[becca59]

@sninge. How frustrating. I am so strict with the results from mine. Yet am as much likely to get it on NHS where I live as seeing a black moon.

 

[anthill]

Here in Australia, we are waiting to get subsidy from NDSS.
Or National Diabetes Supplies Scheme. So for the time being, i pay for mine. Please Health Minister Subserdise.

 

[jackois]

Surely it's more about those in need of the technology.

I self fund the Dexcom G5, but would have a similar HB1AC even if I didn't. This is due to a combination of things. I had a good education in diabetes treatment & nutrition when diagnosed. I've suffered none of the rationing of meter strips others complain of and my GP is supportive of the things I'd like to try.

On the same theory, I'd like a pump so that I could set up different bolus regimes and suspend insulin while exercising. I don't fit the criteria to be offered a pump either, and accept how it is. I paid taxes for 40 odd years but still understand where the NHS is coming from with resource management.

I'll be happy if the Libre is prescribed for those who have a greater need than myself rather than willy nilly due to a postcode lottery.

 

[AndyGW]

Singe - and your friend is about get them on prescription... no improvement for her if she’s not showing any already while the rest of us that do get the most out of them continue to pay - sigh.
Some good news though. I’ve just managed to source mine now for £38 rather than £45 after handing in self-declared VAT exemption form and then persuading pharmacist that with all the money they make off me from the markup on my prescriptions they didn’t need to put that same markup (30% or so) on my sensors and so I have them with 8% (£3) markup on wholesale instead of £10.
Others might find this useful and look to try the same if paying notably more.

 

[AndyGW]

Surely it's more about those in need of the technology.

I self fund the Dexcom G5, but would have a similar HB1AC even if I didn't. This is due to a combination of things. I had a good education in diabetes treatment & nutrition when diagnosed. I've suffered none of the rationing of meter strips others complain of and my GP is supportive of the things I'd like to try.

On the same theory, I'd like a pump so that I could set up different bolus regimes and suspend insulin while exercising. I don't fit the criteria to be offered a pump either, and accept how it is. I paid taxes for 40 odd years but still understand where the NHS is coming from with resource management.

I'll be happy if the Libre is prescribed for those who have a greater need than myself rather than willy nilly due to a postcode lottery.

Jackois - I hear what you’re saying and nice that you can afford to self-fund. Maybe it should be means tested and those that can afford to should pay themselves while those that cannot get on prescription but how do you draw the line given that a big part of it will be how individuals prioritise their own health. I would probably fall into the “cannot afford” bracket but I prioritise paying for myself over arguably what others might prioritise (Xmas, movies, meals out, car... heating!).
If I did not have the sensors I cannot say my HbA1c would necessarily be much different given I do have good control but as I’d be going back to testing 8+ times a day it would cost the NHS more for those prescriptions as well as the potential for longer term impact were my control to slip.
The NHS needs to look at the long term impact of use of this technology which should hopefully be reduction of complications leading to hospital admission rather than the short term additional cost of moving to prescribing these sensors for all. But it does need a big caveat on the individual showing that their diabetes management is improving or else they’re only throwing good money after bad. No improvement to management over, say, six months then prescription ends - or something like that.

 

[Deleted Account]

But it does need a big caveat on the individual showing that their diabetes management is improving or else they’re only throwing good money after bad. No improvement to management over, say, six months then prescription ends - or something like that.

I am not sure what is going to happen after April, but, currently, my CCG includes the following section in their Libre criteria:

"The clinical effectiveness of Freestyle Libre will be assessed at 6 months to ensure that it is only continued in those patients where benefits listed above have been achieved. If benefits are achieved at this stage, on-going effectiveness will then be re-assessed on a 6 to 12 month basis. Patients should be told that NHS provision of Freestyle Libre® will be withdrawn if these criteria are not met at each review. All of this information will be conveyed to the patient by using the patient contract."​

 

[becca59]

@AndyGW I agree, I too self fund. I forgo other stuff in my life to fund it and work my socks off to control my diabetes. Even pre Libre, testing regularly, exercising, eating and drinking sensibly. Pretty low carb on the whole. Rarely indulge. Can somebody tell me why I should be exempt from NHS funding over someone who doesn’t bother and is in denial and continues to eat and drink what they want regardless. I appreciate there are people who struggle through no fault of their own. But there are many who could try a lot harder.
Having worked all my life and paid into the system I should be eligible just the same as anyone else. And before someone says test 8 times a day and you will be eligible! No, here and I suspect other places as well there is going to have to be one of those other criteria as well to get it. Anybody could test levels 8 times a day if they can be bothered.

 

[NicoleC1971]

Imo and from a nhs manager background
IMO ..the healthier you are eg..if your HBA1C has improved , if you commit to swiping 10 tiimes a day , if you commit to eye care , foot care you will be funded.
Unhealthy people cant jump on the bandwagon now thinking the libre will make them well It takes work !. NHS money should be spent on the people who activley try to be well.

To get to mine I had to take a day off work to be educated on my diabetes and sign a contract to say that I tested at least 8 times a day anyway and would achieve a reduction of 0.5% in my HBA1c so there are a number of hoops to jump through i.e. you have to be committed and savvy enough to know what to do with all the useful data the fsl provides.
I also work my socks off to get good control but suffer with exercise related spikes.
Has helped me so much just recently when ill with still horrible blood sugars, to be able to swipe rather than sit up and prick test.
Diabetes UK have done a great job badgering the reluctant CCGs into making this happen for those who will benefit from the tech.

 

[Deleted Account]

And before someone says test 8 times a day and you will be eligible! No, here and I suspect other places as well there is going to have to be one of those other criteria as well to get it.

Currently, in my area you have to test 8 times AND something else (e.g. hospitalised with DKA twice or 2 x severe hypos). I understand from April, the RMOC criteria will apply nationally, This only requires one criteria to be satisfied.
However, I am expecting to have to justify why I test so many times per day. When the usual advice is 4 times per day, and that is seen as expensive (I have seen stories of people with type 1 being asked why they test more than 4 times), I can't see all CCGs easily accepting we need to test more.
And, if my CCG's current criteria are anything to go by, testing for driving does not count in those eight.

 

[evilclive]

And, if my CCG's current criteria are anything to go by, testing for driving does not count in those eight.

On pure a cost basis, no, it doesn't, because the driving testing still needs the fingerpricks. The guidelines are explicit that they're balancing the saving of removing 8 strips/day against the extra cost of the libre.

This doesn't take account of any of the other reasons that it's worth it, it's just the immediate short term cost.

 

[tim2000s]

@AndyGW I agree, I too self fund. I forgo other stuff in my life to fund it and work my socks off to control my diabetes. Even pre Libre, testing regularly, exercising, eating and drinking sensibly. Pretty low carb on the whole. Rarely indulge. Can somebody tell me why I should be exempt from NHS funding over someone who doesn’t bother and is in denial and continues to eat and drink what they want regardless. I appreciate there are people who struggle through no fault of their own. But there are many who could try a lot harder.
Having worked all my life and paid into the system I should be eligible just the same as anyone else. And before someone says test 8 times a day and you will be eligible! No, here and I suspect other places as well there is going to have to be one of those other criteria as well to get it. Anybody could test levels 8 times a day if they can be bothered.

Hi Becca, from April, no there wont be 8x plus another criteria, as that’s not how the RMOC criteria work.

If anyone says that to you, stand in front of them and ask them why they are not adhering to the National Guidance that has been widely publicised in the press and don’t take no for an answer. They are not allowed to add additional criteria from next year.

 

[AndyGW]

Hmmm. I’m more confused than when I started reading these responses.
Who is it that will be making the decision come April and on what basis will it be made?
Is the “who” my local GP, my diabetic consultant, some unknown person at local CCG or someone else?
Is the “what basis” the RMOC criteria from 2017 that local CCG’s made their own decisions on but that ‘they’ are now looking to enforce the “who” to be following from April 19?

 

[becca59]

The way I read it is, that come April all CCGs will have to prescribe to the same Guidance. (Thanks to stirling work Patha Ka @parthaska) None of them will be able to avoid prescribing at all. However, it then becomes a question of how strictly they want to apply that criteria. In the small print it says it will enable 25% of Type 1s to access the Libre. And the other 75%???
It is all a step in the right direction and I am sure in the next few years it will be available to all who want it. I just think there are going to be many disappointed people in April seduced by the recent headlines.

 

[Copernicus]

Hi Becca, from April, no there wont be 8x plus another criteria, as that’s not how the RMOC criteria work.

If anyone says that to you, stand in front of them and ask them why they are not adhering to the National Guidance that has been widely publicised in the press and don’t take no for an answer. They are not allowed to add additional criteria from next year.

I must admit that my understanding is that there will still be criteria to be met even from the RMOC, that their criteria is very similar to local CCG's and that they will not just be handing them out to any type 1 who asks for it.

 

[KenBachelor]

I'm sure this information must have been posted somewhere but I can't find it, so please accept my apologies for any duplication. We were asked to write to our MP's asking about the delay in approving the Libre test for driving and I've now received the following from my MP.

Assuming that what he says is correct, it looks as if we can stop testing with blood by the end of the month!

Dear Ken

Thank you for contacting me about the Driving Vehicle Licensing Agency (DVLA) guidance on the use of monitoring technologies for people living with diabetes.

I appreciate your concerns, and understand that the DVLA is currently in the process of amending the Assessing Fitness to Drive guidance on the use of new monitoring technologies for people who suffer from diabetes.

My Ministerial colleagues have reassured me that the updated guidance is intended for publication in February. It is welcome news that the guidance will allow for the testing of interstitial fluid for driving licensing purposes for car or motorcycle drivers who have diabetes. Goods vehicle and bus drivers must continue to monitor their blood glucose levels.

I hope this response has provided a measure of clarity and reassurance, and I will continue to monitor the updated guidelines closely.

Thank you again for taking the time to contact me.

Warm regards

Nadhim

Nadhim Zahawi
MP for Stratford on Avon

 

[MrCuddlyMoses]

I'm sure if you are well controlled, you have no chance of getting it.

No any diabetic on insulin can get it now T1, T2, T3, ect

 

[Rokaab]

No any diabetic on insulin can get it now T1, T2, T3, ect

Not quite, you still have to meet specific criteria to get it, it is expected only 20% of T1's at least will qualify, and I believe some CCGs are still making it very very very difficult to get (despite NHS Englands say on it)

 

[MrCuddlyMoses]

Not quite, you still have to meet specific criteria to get it, it is expected only 20% of T1's at least will qualify, and I believe some CCGs are still making it very very very difficult to get (despite NHS Englands say on it)

Sorry you are wrong, I have read the new NHS policy

 

[Deleted Account]

Sorry you are wrong, I have read the new NHS policy

My understanding is the same as @Rokaab
Can you provide a link to the NHS policy you have read?
This will be very useful to anyone trying to make the argument to their diabetes team for a Libre.

 

[Rokaab]

My understanding is the same as @Rokaab
Can you provide a link to the NHS policy you have read?
This will be very useful to anyone trying to make the argument to their diabetes team for a Libre.

My DN understands the same thing as well (ie about 20%), we were just talking about it yesterday when I went to see her (she thinks its its terrible that they're not letting more have it).