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Libre

H

HelenNicholas

Member
Relationship to Diabetes
Type 1
Hello everyone. My son was diagnosed in DKA at the end of March. It's ironic as my husband's team designed the software for the Libre sensor. He has worked for Abbott for 28 years. It's all been a terrible shock. My son was sent home with laxatives, despite loosing 8kgs of weight, difficulty breathing and walking and terrible acid reflux and being sick and unable to eat. He was falling asleep all the time and developed a boil on his face.
He is sitting his finals at Oxford starting next week after a 4 year degree in Classics. It's going to be very hard for him.
If you have any feedback on Libre, please send it to me. My husband will be very interested to hear you feedback and help to improve all diabetes management. Thank you everyone. Helen
 
HelenNicholas said:
Hello everyone. My son was diagnosed in DKA at the end of March. It's ironic as my husband's team designed the software for the Libre sensor. He has worked for Abbott for 28 years. It's all been a terrible shock. My son was sent home with laxatives, despite loosing 8kgs of weight, difficulty breathing and walking and terrible acid reflux and being sick and unable to eat. He was falling asleep all the time and developed a boil on his face.
He is sitting his finals at Oxford starting next week after a 4 year degree in Classics. It's going to be very hard for him.
If you have any feedback on Libre, please send it to me. My husband will be very interested to hear you feedback and help to improve all diabetes management. Thank you everyone. Helen
Click to expand...
The biggest problem for me is loss of signal, it usually comes back on. But have had a few that don’t, some only lasted 3 days others 10 days. I’m still on Libre 2, waiting on prescription changing
 
HelenNicholas said:
If you have any feedback on Libre, please send it to me. My husband will be very interested to hear you feedback and help to improve all diabetes management.
Click to expand...
Why can’t they improve the app there’s so much more functionality we need. Eg different alarms for night time vs daytime. I don’t want to have to change the alarm settings every morning and evening but in the day I want to be alerted before I’m low and at night I don’t want to be disturbed unless I’m actually low.

Repeat alarms eg if you acknowledge a low alarm now, that’s it it never sounds again even if you drop so low that you die. Whereas really you should be able to have a second alarm that goes off when you drop into actually being hypo under 4 and a third alarm that then sounds every 15 minutes until it’s fixed. All of those should of course be optional too and customisable to the persons needs.

Bolus calculator. They had this on the manual scanner so why can’t they just build the same formula into the app? They say you can bolus based on the readings and they clearly have a formula they’re happy with so why haven’t we got a built in bolus advisor in the librelink app yet.

An Apple Watch app. Just showing the same readings as from the phone. It’s not difficult to build that, loads of unofficial solutions exist why can’t we have an official one.

I could go on but I won’t, all these requests and more have gone to abbot countless times but they don’t seem to care about actually listening to what features users need from the app and improving the app to include them.

In all my years of using the libre app they’ve basically never added a new feature other than cgm capability. And they only added that to improve their profits, better compete with other cgms, and pave the way for moving into the hybrid closed loop pump market
 
Been on Libre 2+ for nearly a year - Loss of signal is a problem, and recently a couple have fallen off (1st time in 3yrs - has the adhesive changed?) but generally it is very good in normal range (when you go low or high, the readings can become inaccurate) - the increase in time of expiry from 14 days to 15 days from the Libre 2 might seem as an improvement but it actually makes it more difficult to plan on changing it with everything else going on in our lives - 14 full days (without reading stupidly low for the last couple of days would be great, rather than the 15 (28 would be better!)) - and the app should have far more integration with other devices - you should not have to (often) "sideload" 3rd party apps to make it work with a smartwatch for example - generally very happy with it, as long as you know its limitations
 
mashedupmatt said:
Been on Libre 2+ for nearly a year - Loss of signal is a problem, and recently a couple have fallen off (1st time in 3yrs - has the adhesive changed?) but generally it is very good in normal range (when you go low or high, the readings can become inaccurate) - the increase in time of expiry from 14 days to 15 days from the Libre 2 might seem as an improvement but it actually makes it more difficult to plan on changing it with everything else going on in our lives - 14 full days (without reading stupidly low for the last couple of days would be great, rather than the 15 (28 would be better!)) - and the app should have far more integration with other devices - you should not have to (often) "sideload" 3rd party apps to make it work with a smartwatch for example - generally very happy with it, as long as you know its limitations
Click to expand...
Thank you. I will give him this feedback. We had a Libre fail as soon as we came out of hospital with only one spare it made me so nervous. X
 
Lucyr said:
Why can’t they improve the app there’s so much more functionality we need. Eg different alarms for night time vs daytime. I don’t want to have to change the alarm settings every morning and evening but in the day I want to be alerted before I’m low and at night I don’t want to be disturbed unless I’m actually low.

Repeat alarms eg if you acknowledge a low alarm now, that’s it it never sounds again even if you drop so low that you die. Whereas really you should be able to have a second alarm that goes off when you drop into actually being hypo under 4 and a third alarm that then sounds every 15 minutes until it’s fixed. All of those should of course be optional too and customisable to the persons needs.

Bolus calculator. They had this on the manual scanner so why can’t they just build the same formula into the app? They say you can bolus based on the readings and they clearly have a formula they’re happy with so why haven’t we got a built in bolus advisor in the librelink app yet.

An Apple Watch app. Just showing the same readings as from the phone. It’s not difficult to build that, loads of unofficial solutions exist why can’t we have an official one.

I could go on but I won’t, all these requests and more have gone to abbot countless times but they don’t seem to care about actually listening to what features users need from the app and improving the app to include them.

In all my years of using the libre app they’ve basically never added a new feature other than cgm capability. And they only added that to improve their profits, better compete with other cgms, and pave the way for moving into the hybrid closed loop pump market
Click to expand...
He isn't in charge of the app. But I will give him your feedback. My husband did that software for blood sugars. The app is awful in my opinion. I'm going to re read your reply and get him to feed it all back. Xxx
 
HelenNicholas said:
Thank you. I will give him this feedback. We had a Libre fail as soon as we came out of hospital with only one spare it made me so nervous. X
Click to expand...
The "good" thing about an early failure is that you can build up a stockpile of them when they are replaced by Abbott (Not good news for Abbott though!) - so hopefully the feedback will help

And "Compression" Lows do my head in - just because I'm lying on my side it doesn't mean I'm having a hypo!
 
Lucyr said:
Why can’t they improve the app there’s so much more functionality we need. Eg different alarms for night time vs daytime. I don’t want to have to change the alarm settings every morning and evening but in the day I want to be alerted before I’m low and at night I don’t want to be disturbed unless I’m actually low.

Repeat alarms eg if you acknowledge a low alarm now, that’s it it never sounds again even if you drop so low that you die. Whereas really you should be able to have a second alarm that goes off when you drop into actually being hypo under 4 and a third alarm that then sounds every 15 minutes until it’s fixed. All of those should of course be optional too and customisable to the persons needs.

Bolus calculator. They had this on the manual scanner so why can’t they just build the same formula into the app? They say you can bolus based on the readings and they clearly have a formula they’re happy with so why haven’t we got a built in bolus advisor in the librelink app yet.

An Apple Watch app. Just showing the same readings as from the phone. It’s not difficult to build that, loads of unofficial solutions exist why can’t we have an official one.

I could go on but I won’t, all these requests and more have gone to abbot countless times but they don’t seem to care about actually listening to what features users need from the app and improving the app to include them.

In all my years of using the libre app they’ve basically never added a new feature other than cgm capability. And they only added that to improve their profits, better compete with other cgms, and pave the way for moving into the hybrid closed loop pump market
Click to expand...
There is nothing he can do about this unfortunately. American company controlling everything. He only does the software for the device. It's so frustrating x
 
mashedupmatt said:
The "good" thing about an early failure is that you can build up a stockpile of them when they are replaced by Abbott (Not good news for Abbott though!) - so hopefully the feedback will help

And "Compression" Lows do my head in - just because I'm lying on my side it doesn't mean I'm having a hypo!
Click to expand...
That's so interesting. I haven't slept for weeks watching my son with lows only to realise that he was fine.
 
HelenNicholas said:
Hello everyone. My son was diagnosed in DKA at the end of March. It's ironic as my husband's team designed the software for the Libre sensor. He has worked for Abbott for 28 years. It's all been a terrible shock. My son was sent home with laxatives, despite loosing 8kgs of weight, difficulty breathing and walking and terrible acid reflux and being sick and unable to eat. He was falling asleep all the time and developed a boil on his face.
He is sitting his finals at Oxford starting next week after a 4 year degree in Classics. It's going to be very hard for him.
If you have any feedback on Libre, please send it to me. My husband will be very interested to hear you feedback and help to improve all diabetes management. Thank you everyone. Helen
Click to expand...
Diagnosed Type 1, 01/04/25, libre 2 fitted 4 weeks later , so much easier than finger pricking test , despite 15 min delay ,very reluctant at first to have fitted , but now realise doctors and nurses were right to recommend it .Conserned about airport security , but handed spare sensor over to avoid bag scanner , as advised , as info unclear , still terrified , apprehensive, like your son , but just returned from 7 nights in Malta and the libre sensor was a valuable confidence backup .
 
Saoirse said:
Hi, nothing to do with libre but I hope your sons College and Tutor are fully clued into his T1 diagnosis? It’s a lot to deal with with finals in the mix. Hope he’s doing ok.
Click to expand...
It's been horrendous. It's like they have never heard of it. The loops we have had to jump through have added extra stress. Thank you for your kind words. 4 years at Oxford a scholar and they now want rubber stamped proof that he definitely has diabetes. It's so challenging. Missing two exams now and degree in question. Thank you for asking means so much x
 
HelenNicholas said:
It's been horrendous. It's like they have never heard of it. The loops we have had to jump through have added extra stress. Thank you for your kind words. 4 years at Oxford a scholar and they now want rubber stamped proof that he definitely has diabetes. It's so challenging. Missing two exams now and degree in question. Thank you for asking means so much x
Click to expand...
Try this link for contacting someone.

Disability | University of Oxford

The Disability Advisory Service provides information and advice on disability issues and facilitates support for those with, for example, sensory or mobility impairments, long-term health conditions, specific learning difficulties, autistic spectrum conditions or mental health...
www.ox.ac.uk www.ox.ac.uk
 
HelenNicholas said:
It's been horrendous. It's like they have never heard of it. The loops we have had to jump through have added extra stress. Thank you for your kind words. 4 years at Oxford a scholar and they now want rubber stamped proof that he definitely has diabetes. It's so challenging. Missing two exams now and degree in question. Thank you for asking means so much x
Click to expand...
I’m really sorry to hear this, I’m not familiar with Oxford processes but am with university more broadly - It should be possible to apply for mitigating circumstances or to be excused from attending. There’s usually a tight deadline for this, and evidence is needed (so this is where libre will be useful, as a record especially of lows). Really important to notify college tutorial office/tutor when an issue affecting exams happens, as may need to be noted on the day: this page may be helpful though you probably already have been through it: https://www.ox.ac.uk/students/academic/exams/problems-completing-your-assessment. The timing is so unfortunate but my fingers are crossed for him, I hope all goes well and he gets to enjoy the last bit of being an UG once the exams are done.
 
Leadinglights said:
Try this link for contacting someone.

Disability | University of Oxford

The Disability Advisory Service provides information and advice on disability issues and facilitates support for those with, for example, sensory or mobility impairments, long-term health conditions, specific learning difficulties, autistic spectrum conditions or mental health...
www.ox.ac.uk www.ox.ac.uk
Click to expand...
Thank you. Hopefully all sorted now. I really appreciate your help. Thankyou so much x
 
Saoirse said:
I’m really sorry to hear this, I’m not familiar with Oxford processes but am with university more broadly - It should be possible to apply for mitigating circumstances or to be excused from attending. There’s usually a tight deadline for this, and evidence is needed (so this is where libre will be useful, as a record especially of lows). Really important to notify college tutorial office/tutor when an issue affecting exams happens, as may need to be noted on the day: this page may be helpful though you probably already have been through it: https://www.ox.ac.uk/students/academic/exams/problems-completing-your-assessment. The timing is so unfortunate but my fingers are crossed for him, I hope all goes well and he gets to enjoy the last bit of being an UG once the exams are done.
Click to expand...
ps If things are not getting sorted, then do take this to the Senior Tutor of the college, as they have overall responsibility for the wellbeing of the students.
 
Pretty much what Lucy says. The lack of alarm functionality is very poor and causing me a lot of sleepless nights.

Also perhaps a different error message for when its 'recalculating' from when the sensor has genuinely lost contact.
 
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