Freestyle Libre - what's involved & is it worth it..?

[Okulu]

Hi all..

I'm T1 and have been on a pump (Omnipod) since August 2015. My Dietitian has suggested I look into getting the Freestyle Libre, but hasn't actually told me anything about it... Having had a google and search on here, I'm not much the wiser, so was wondering if anyone might be able to help with my queries below..?

1. How helpful actually is it? From what I understand, you can scan it, and it tells you the last 8 hours of BG readings, and where it's heading - is that correct? Does it do anything else?

2. Does it mean you don't need to do any finger prick tests anymore?

3. Is the sensor comfortable?

4. Can you wear it anywhere other than you're arm? (Basically, I don't want anyone to see it).

5. Availability - the website says it's out of stock at the moment. Anyone know how long you have to wait for one? And how you get on a 'waiting list'?

6. What's the cost per year?

7. Is it likely that the NHS will ever fund it?

Sorry, I know that's a lot of questions but I'd be super grateful if anyone could enlighten me!

Thanks so much in advance...

 

[steve_p6]

Hi all..

I'm T1 and have been on a pump (Omnipod) since August 2015. My Dietitian has suggested I look into getting the Freestyle Libre, but hasn't actually told me anything about it... Having had a google and search on here, I'm not much the wiser, so was wondering if anyone might be able to help with my queries below..?

1. How helpful actually is it? From what I understand, you can scan it, and it tells you the last 8 hours of BG readings, and where it's heading - is that correct? Does it do anything else?
Very helpful, basically does all if the above which in turn helps you understand how quickly bolusses kick in or how different food combinations carb-protein-fat will drive your BGs.

2. Does it mean you don't need to do any finger prick tests anymore? Always worth a BG check before taking action on a low/high to verify. Also driving needs a BG test as CGM does not count.

3. Is the sensor comfortable? Never had any pain off mine.

4. Can you wear it anywhere other than you're arm? (Basically, I don't want anyone to see it). People do arm/tum/leg.

5. Availability - the website says it's out of stock at the moment. Anyone know how long you have to wait for one? And how you get on a 'waiting list'? Try to order and at the login page go and register , rumour is supply will open up at end of Jan.

6. What's the cost per year?

About £100 per month for sensors if you are VAT exempt.

7. Is it likely that the NHS will ever fund it? I can see them using it for short periods to review/fix problems people are having with control but I expect they would want it much cheaper begore they funded their use 24x7.

Sorry, I know that's a lot of questions but I'd be super grateful if anyone could enlighten me!

Thanks so much in advance...

Answer are in the quote above.

 

[noblehead]

1) It will give you the previous 8 hours reading only if the sensor has been scanned in that time.

2) No, you must still test for DVLA purposes and to check the accuracy of the sensors.

3) Yes extremely, not had any issues.

4) Abbott say the sensors should only be worn on the arms.

5) I waited 3 months but as Steve says I think the waiting time now is weeks rather than months.

6) Depends on how many sensors you order.

7) In time perhaps, but given the problems people are experiencing with the accuracy of the sensors I doubt they'll fund the Libre until matters are resolved.

 

[paulpapa]

I ordered one last night; I really can't afford it, but if it'll help be get things sorted health-wise then I thought it would be worth it. Quite excited about it arriving!

 

[Hirstygirl]

1) It will give you the previous 8 hours reading only if the sensor has been scanned in that time.

2) No, you must still test for DVLA purposes and to check the accuracy of the sensors.

3) Yes extremely, not had any issues.

4) Abbott say the sensors should only be worn on the arms.

5) I waited 3 months but as Steve says I think the waiting time now is weeks rather than months.

6) Depends on how many sensors you order.

7) In time perhaps, but given the problems people are experiencing with the accuracy of the sensors I doubt they'll fund the Libre until matters are resolved.

I had the email to say I can order this week, but am still on the fence with it really. Maybe you can explain this to me?, say you wanted to do find out what was happening during the night would you have to wake each hour to scan or would the data be there if you had scanned say twice during the night?

 

[tim2000s]

I had the email to say I can order this week, but am still on the fence with it really. Maybe you can explain this to me?, say you wanted to do find out what was happening during the night would you have to wake each hour to scan or would the data be there if you had scanned say twice during the night?

No. Think of it as Continuous Glucose Recording. It records glucose data for eight hours then it starts to overwrite the earliest recordings. If you go to bed you can see what happened throughout the night.

 

[steve_p6]

Eg scan at 11 when you go to sleep and then scan again by 7am and you capture all the overnight readings.

 

[Gaz-M]

wish I could afford one but new glasses must come first, must be so handy just to be able to scan and see the results

 

[Hirstygirl]

Eg scan at 11 when you go to sleep and then scan again by 7am and you capture all the overnight readings.

No. Think of it as Continuous Glucose Recording. It records glucose data for eight hours then it starts to overwrite the earliest recordings. If you go to bed you can see what happened throughout the night.

Thanks for the clarity, can't help being a bit dim sometimes
So worth the ongoing costs then, would you think? Or better to wait for pump and look into funding CGM (summer 16). I do like the idea of scanning but have little hypo awareness (only know if I drop to 2.4 or lower) so maybe scanning lots would help. Not sure what I should do, any advice appreciated

 

[Hirstygirl]

wish I could afford one but new glasses must come first, must be so handy just to be able to scan and see the results

Money is tight with us also tbh, but if it might help me sort hypos and awareness issues may be money well spent, works out at roughly £100 per month though

 

[Okulu]

1) It will give you the previous 8 hours reading only if the sensor has been scanned in that time.

2) No, you must still test for DVLA purposes and to check the accuracy of the sensors.

3) Yes extremely, not had any issues.

4) Abbott say the sensors should only be worn on the arms.

5) I waited 3 months but as Steve says I think the waiting time now is weeks rather than months.

6) Depends on how many sensors you order.

7) In time perhaps, but given the problems people are experiencing with the accuracy of the sensors I doubt they'll fund the Libre until matters are resolved.

Thanks everyone for your responses. It's prohibitively expensive, and like you Hirstygirl, I'm not sure it'll be worth it....

I know Abbott says it should be worn on the arms, but can it be worn elsewhere 'off label', as it were? If not, I just don't think I could deal with it on my arm...

And can sensors be made to last more than 2 weeks?

 

[tim2000s]

@Okulu, the sensors time out after 15 days. Those of us who use the Libre with apps have found this out.

You can wear the sensor where you want but be aware that if you have issues you must tell Abbott it was on the arm or they won't replace it.

 

[Okulu]

@Okulu, the sensors time out after 15 days. Those of us who use the Libre with apps have found this out.

You can wear the sensor where you want but be aware that if you have issues you must tell Abbott it was on the arm or they won't replace it.

Thanks! So, if I don't use the sensor with an app (how does this work anyway..?), will it last longer? Sorry, I know this is probably a very stupid question...

 

[tim2000s]

No. Using the reader it only lasts 14 days.

 

[Okulu]

OK, thanks!

 

[noblehead]

Thanks everyone for your responses. It's prohibitively expensive, and like you Hirstygirl, I'm not sure it'll be worth it....

I know Abbott says it should be worn on the arms, but can it be worn elsewhere 'off label', as it were? If not, I just don't think I could deal with it on my arm...

And can sensors be made to last more than 2 weeks?

Only started on the Libre at the start of this month so have only used the arms, what would be the problems wearing the sensor on your arm? The sensors are so light and small that you forget your wearing one.

 

[noblehead]

I had the email to say I can order this week, but am still on the fence with it really. Maybe you can explain this to me?, say you wanted to do find out what was happening during the night would you have to wake each hour to scan or would the data be there if you had scanned say twice during the night?

No that would defeat the object if you had to scan every hour, I just scan before bed and again on waking and the graph on the screen shows how your bg levels have been behaving.

 

[Okulu]

Only started on the Libre at the start of this month so have only used the arms, what would be the problems wearing the sensor on your arm? The sensors are so light and small that you forget your wearing one.

I don't want anyone to see it and ask me questions - I'm very private about my diabetes. I was only persuaded to have a pump when I realised you could get one without tubing (the Omnipod) and therefore hide it under clothing. No one has ever noticed it! I think if I were to invest in the Libre, I'd have to know I could use the sensor on my leg, and that doesn't really seem possible from what people have said here...

So...have you found the Libre helpful then? Has it been worth the expense etc?

 

[tim2000s]

I don't want anyone to see it and ask me questions - I'm very private about my diabetes. I was only persuaded to have a pump when I realised you could get one without tubing (the Omnipod) and therefore hide it under clothing. No one has ever noticed it! I think if I were to invest in the Libre, I'd have to know I could use the sensor on my leg, and that doesn't really seem possible from what people have said here...

So...have you found the Libre helpful then? Has it been worth the expense etc?

Totally. I've reduced my hba1c from 7 ish to just under 6 and that's solely thanks to Libre.

 

[Heathero]

Have been on waiting list since Nov, Xmas have recontacted them but too soon, still waiting to hear (although new advancement now one available soon re Bms via perspiration). The f style libra is costly was given impression that new pads may become available on Nhs in future so best to purchase one. So will wait to hear when available.