Freestyle libre - blind users?

[jake bullet]

Hello,

Posting on behalf of my registered blind type 1 mother.

She's been excited about the November news - libre's for all !, and waited until she had her diabetic review at the doctors to ask about availability etc. The response was er, I do blood tests, you'll have to see a doctor about that.

So she went and saw a gp, who has put her in the system for an appointment at the hospital with the diabetic team. He wasn't very positive about her chances of getting one, and she's now thinking they will say you've got good control and can manage so stop wasting our time. She's of the age where you keep quiet and keep plugging on, so feels a bit of a fraud wanting something better.

One of the criteria is:
People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability who require carers to support glucose monitoring and insulin management.

She does her own blood tests. By having her finger pricker turned up to maximum to generate a large blood sample which she wipes down the entire side of the test strip. Put enough on and you'll hit the sample area eventually. She then has to grab her magnifying glass before the meter switches itself off.
I think you could build a case that this isn't really self monitoring, but she thinks she can manage

She also thinks because her hba1c is good they will tell her to go away because she's obviously in control. In reality she gets good results by doing & eating the same things most days. If she goes on holiday etc it all goes haywire.

So to wrap up this war & peace, what do you think her chances are?

Thanks!

 

[Ljc]

Hello @jake bullet , welcome to the forum.
Post 2 by @everydayupsanddowns on this thread freestyle-libre gives a full list of criteria for nhs funding of the Libre , I know one of the criteria is testing 8 or more times a day.

I do hope you mother is successful in getting a Libre funded by the nhs. Having to have the finger pricker set so high must be making her fingers so sore and probably bruised too .
The numbers displayed on the Libre when you scan is larger than any glucose meter I have had over the years.
The Libre doesn’t do away with finger bodging as you shouldn’t use them when hypo because they lag around 10 minutes behind a blood sample as they are testing different fluids to blood , they are also less reliable when hypo or hyper.
Luckily having T2 I am able to self fund my Libre and it’s been a game changer for me. With applying the sensor I imagine the hardest part for you mother would be when fitting the two parts of the applicator together as you have to align two black marks which from memory are raised.

 

[khskel]

If you use the current mk1 libre with a smart phone that supports speech to text it will speak the result.

 

[everydayupsanddowns]

If you use the current mk1 libre with a smart phone that supports speech to text it will speak the result.

Welcome to the forum @jake bullet - sorry to hear about the challenges your Mum is facing.

For Libre it sounds like your Mum would also qualify under

‘People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability who require carers to support glucose monitoring and insulin management.’

If a smartphone/app with text to speech for Libre is more suitable than fiddling with strips?

Alternatively there are meters especially designed for blind and partially sighted people which read out the result which sound like they might help? One was the Caresens Voice I think.

 

[jake bullet]

Just thought I would follow up on what has happened since.

We went to see the diabetic specialist nurse, who was pretty much an arrogant ****. She's doing it all wrong by aiming for 7, and her highs and lows are caused because she has one latte a week. He dismissed out of hand that being registered blind is a disability, but then 'as a favour' says he will put her on the libre system as a trial.

12 days ago we got to go to a group induction, where he singled us out. Only diabetics can sit round the table, I must wait at the back of the room. Others who arrived with carers after us didn't get this treatment, so I ignored the twerp and went back to helping.

Her sensor was applied successfully. She has a low vision adapted smartphone, and fortunately the libre app isn't one of those that checks for "tampered with" hardware before running. The speech option in the app is fine, and she can get readings herself whenever she likes. We have noticed using the phone it's lower powered than the supplied reader, it doesn't work wearing a coat but the reader will.

The logging part of the app is proving harder than her old system (onetouch), but she is determined to beat it. Her main problem is logging insulin, she enters the rapid value, then ticks the box for long acting and you would expect it to shift focus to the long number box but it doesn't. So she ends up entering 712 units in rapid, which gives an error and then she is lost. She will get there in the end.

Hopefully the libre app will improve over time. Onetouch also integrates with google fit, so exercise is captured automatically, so a bit of a surprise libre doesn't do the same. The phone app also appears to only upload to the cloud, and doesn't get data back. If she uses the reader (over night etc), and I upload it's data the phone app still shows 'holes' where the app hasn't been used.

Is the reader supposed to give different results to the phone app? In our experiments there can be 1mmol difference when you scan them both. I guess they have slightly different algorithms.

It's all gone a bit wrong tonight when she knocked the sensor off going to bed. The reader says she has 2 days left, and I can't find in the menus what you do to start a new sensor early. I'm going to phone them in the morning for advise, so I guess mr. specialist will not be happy there's a nights worth of data missing

 

[Ljc]

I am sorry to hear that your mother is being treated so badly by that ....... person. I think a complaint is in order.you can if you wish do this by contacting PALS at that hospital. My mum was registered blind , she did have a bit of peripheral vision.
I hope your mother can overcome the difficulties she is having with the Libre.

It's all gone a bit wrong tonight when she knocked the sensor off going to bed. The reader says she has 2 days left, and I can't find in the menus what you do to start a new sensor early. I'm going to phone them in the morning for advise, so I guess mr. specialist will not be happy there's a nights worth of data missing

It is so so annoying when you knock it off isn’t it, I now put my sensor further round the back of my arms, which has helped , though they still get the occasional tap on something that I swear has leapt out deliberately lol.

If you swipe the libre’s reader over the new sensor first , you will get the option to start a new sensor , press on that and swipe, though I don’t know for sure you probably do the same with the phone, what I do know is you must do the reader first else only the phone app will work on that sensor.
After an hour you can start getting readings with the libre’s reader.

 

[jake bullet]

Thank you for your reply. We've done as you suggested and her new sensor is 'warming up'. We're trying a bit further round, so hopefully it will help.

 

[Kaylz]

. We have noticed using the phone it's lower powered than the supplied reader, it doesn't work wearing a coat but the reader will.

I don't think that's anything to do with the app, possibly the nfc chip in the phone as I can scan using my phone in a case and through 2 layers of a jumper and jacket no problems

Is the reader supposed to give different results to the phone app? In our experiments there can be 1mmol difference when you scan them both. I guess they have slightly different algorithms.

Are both the newest updated software? there was an update for the reader a few months ago and the reader version should be 2.4.8, you can find the version by checking on the Libre reader by going to the gear sign at the top right, tap system status, scroll down to system info and you will get it there, if its not version 2.4.8 then it will require updating but it cant be done when a sensor is in use, you'll also have to check the app in the app store to see whether that requites an update too xx

 

[khskel]

I have found that on my phone you have to be more precise about the placement of the phone on the sensor. In my case it has to be the camera lens on the sensor. Works a treat but otherwise no go.

 

[Bruce Stephens]

I have found that on my phone you have to be more precise about the placement of the phone on the sensor.

Yes, I find the same. The Reader is much easier, and I can use it without looking (even without any sound or vibration notification), but with the phone I often need to take a few seconds until I get it. I can believe different phones have differently powered NFC hardware, so I'm not surprised that some don't work as well through thicker clothing.

 

[everydayupsanddowns]

Don’t forget to swipe with the phone too as soon as the sensor is started. If memory serves you have to start with the reader then scan the reader and the phone within an hour of the sensor starting to use both at the same time.

 

[Kaylz]

If memory serves you have to start with the reader then scan the reader and the phone within an hour of the sensor starting to use both at the same time

since the app update the 1 hour window no longer applies and a phone can be used at any point of a sensors wear time xx

 

[everydayupsanddowns]

since the app update the 1 hour window no longer applies and a phone can be used at any point of a sensors wear time xx

thanks for confirming @Kaylz! I wasn’t sure as I have just been running by the old rules 🙂