Libre -self funding ?

[Jon-Manchester]

Hi,

I am newbie, being diagnosed as T1 back in September. I am really keen to use any technology that is available to help me manage the diabetes.
So I have been thinking of the Libre, I would love to use it and of course it would be great if I could get it funded by NHS but at the same time I don’t want to wait and hold off using just in anticipation that I may or may not get it through NHS.
So I have a couple questions, I know that one of the Nice criteria is checking more than 8 times a day. Does it matter if those ‘8 times’ is from using a Libre? Basically will self funding a Libre make me less likely to get it funded by NHS?

Secondly, have anyone got recommendation of where to buy the sensors from? I can see they are on Amazon but I am bit worried about buying medical ‘equipment’ through amazon

I would welcome your thoughts

Jon

 

[Robin]

Hi,

I am newbie, being diagnosed as T1 back in September. I am really keen to use any technology that is available to help me manage the diabetes.
So I have been thinking of the Libre, I would love to use it and of course it would be great if I could get it funded by NHS but at the same time I don’t want to wait and hold off using just in anticipation that I may or may not get it through NHS.
So I have a couple questions, I know that one of the Nice criteria is checking more than 8 times a day. Does it matter if those ‘8 times’ is from using a Libre? Basically will self funding a Libre make me less likely to get it funded by NHS?

Secondly, have anyone got recommendation of where to buy the sensors from? I can see they are on Amazon but I am bit worried about buying medical ‘equipment’ through amazon

I would welcome your thoughts

Jon

Hi Jon. The guidelines for prescribing the Libre were updated to take into account people who had been self funding,you can read them here.
https://www.diabetes.org.uk/resources-s3/2019-05/Flash England Criteria 1st May 2019.pdf
I self fund, and get mine direct from the Abbott website, but there has been a waiting list for new accounts, so I don’t know whether that is a viable proposition or not, at the moment. ( I have asked my surgery to refer me back to the hospital to see if I can be prescribed them, but the wheels are grinding extremely slow)
Some people buy them from their local pharmacy, but you have to ask them to order them in for you (ASDA are one of the better priced ones, I think). You can get the VAT taken off, if you fill in the declaration, which brings the price down. Then you can use a mobile phone to scan the sensor. (I use a reader, which I got from Abbott, though, because I am such a dinosaur I don’t have a smart phone)

 

[Jon-Manchester]

Hi Jon. The guidelines for prescribing the Libre were updated to take into account people who had been self funding,you can read them here.
https://www.diabetes.org.uk/resources-s3/2019-05/Flash England Criteria 1st May 2019.pdf
I self fund, and get mine direct from the Abbott website, but there has been a waiting list for new accounts, so I don’t know whether that is a viable proposition or not, at the moment. ( I have asked my surgery to refer me back to the hospital to see if I can be prescribed them, but the wheels are grinding extremely slow)
Some people buy them from their local pharmacy, but you have to ask them to order them in for you (ASDA are one of the better priced ones, I think). You can get the VAT taken off, if you fill in the declaration, which brings the price down. Then you can use a mobile phone to scan the sensor. (I use a reader, which I got from Abbott, though, because I am such a dinosaur I don’t have a smart phone)

Thank you Robin, that is really helpful.

 

[Bruce Stephens]

The guidelines for prescribing the Libre were updated to take into account people who had been self funding

The wording suggests the intent was to allow grandfathering in of people who were self funding before the current prescribing criteria. I'm not sure how self-funding would be looked at now. It's perhaps worth checking with your local diabetes team if you're considering doing that, just to make sure you know how they feel. (I think there's quite a bit of flexibility, so they may be fine with you self-funding just to see whether it's for you or not.)

 

[Jon-Manchester]

The wording suggests the intent was to allow grandfathering in of people who were self funding before the current prescribing criteria. I'm not sure how self-funding would be looked at now. It's perhaps worth checking with your local diabetes team if you're considering doing that, just to make sure you know how they feel. (I think there's quite a bit of flexibility, so they may be fine with you self-funding just to see whether it's for you or not.)

Thanks Bruce, good point, I wasn’t sure how much I should share with the diabetes team but I guess it is a good idea to share my thoughts with them and see what they think
Thank you
Jon

 

[trophywench]

You can't completely avoid fingerprick testing though Jon. All CGMS systems including Libre measure interstitial fluid, not actual blood and the rate at which BG shows equally in our interstitial fluid is slower, is round about 10 minutes behind.

So if it shoots up or plummets down, it will only tell you where you blood was 10-ish minutes ago by which time the BG could be higher or lower. Your bodily organs ONLY rely on an actual decent even blood glucose level to keep working properly and avoid complications. Hence by the time Libre tells you that you are 3.9 you could already be a lot lower than that and near to passing out - not good.

 

[Jon-Manchester]

You can't completely avoid fingerprick testing though Jon. All CGMS systems including Libre measure interstitial fluid, not actual blood and the rate at which BG shows equally in our interstitial fluid is slower, is round about 10 minutes behind.

So if it shoots up or plummets down, it will only tell you where you blood was 10-ish minutes ago by which time the BG could be higher or lower. Your bodily organs ONLY rely on an actual decent even blood glucose level to keep working properly and avoid complications. Hence by the time Libre tells you that you are 3.9 you could already be a lot lower than that and near to passing out - not good.

Hi Jenny,
Being a complete newbie I am clearly still in very much in the learning phase and I am trying to make sense of it all. I realise that CGMs show a delayed reading, but I what find now is that I don’t trust my body signs, so even when I haven’t got any high/low signs I end up testing just to be on the safe side and when I am not testing I keep worrying or thinking about my blood sugar.
Also, I love technology so outside of diabetes I use technology all the time (home automation etc) so if CGM makes my life and the management of my diabetes a little bit better I am all for it.

Regards
Jon

 

[everydayupsanddowns]

The best place to buy Libre if self-funding is direct from Abbott.

previously they have needed to restrict new customers because of difficulties keeping up with demand, but those restrictions have recently been lifted.

if you purchase from other online outlets (eg EBay) I believe it can be harder to access tech and product support, eg if a sensor is reading outside of Abbott’s expected performance.

 

[Bruce Stephens]

I realise that CGMs show a delayed reading, but I what find now is that I don’t trust my body signs, so even when I haven’t got any high/low signs I end up testing just to be on the safe side and when I am not testing I keep worrying or thinking about my blood sugar.

That's certainly something the Libre is useful for. (I scan 30 or 40 times a day. After all, there's no reason not to.) It is necessary to do a blood test now and again: for at least some people, some of the time, the Libre isn't reliable enough, so it's as well to test once a day or so just to make sure. (It's also the case that for some of us (including me) it seems very reliable.)

 

[grovesy]

I buy direct from Abbott.

 

[SB2015]

I self funded my Libre to star with, and was able to show hw much it improved my HbA1c (the average reading done 6monthly). This helped me to get the funding from NHS, along with well over 8 tests per day prior to that.
Keep records and it may help you.