Libre - Sharing with Clinic

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SparksFan

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Relationship to Diabetes
Type 1
Hello,
I'm a new T1 Libre user, very experienced T1. And while, yeah, the kit's great it has a couple of disadvantages, including my tendency to obsess over it (to the extent of losing a lot of sleep). Results are ok - 88 per cent in range, estimated HBA1 of 49 vs 48 last blood test, so in JDRF sweet spot and NICE target (nearly). But while I'm sharing data with clinic I'm very twitchy about it (hence the lost sleep).
Have had poor experience with itl. Not seen for years. Had to submit a written complaint to get seen after repeated cancellations (when an appt miraculously appeared). Came to a head coz` I've lost 28lb and while that's great, it's created some issues with control. GPs had recommended Libre without clinic responding at first (you can see, this is a theme).
So the sharing data: is it just me feeling spied upon? Do I abandon the sharing with clinic because of the paranoia and stress it's causing?
Wd be interested in hearing experience of others because the whole thing is leaving me wired.
Thanks!
 
SparksFan said:
So the sharing data: is it just me feeling spied upon?
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I know no one looks at my data except in appointments. Even in appointments they don’t always look at it. So I don’t feel spied on no. If they’re rubbish at even sending you appointments they’re really not going to be looking at your bgs between appointments.
 
SparksFan said:
So the sharing data: is it just me feeling spied upon?
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I'm sure it isn't just you. I'm not bothered because I'm confident they're not going to be looking at it except if I'm asking for some advice (I'm sure they're more than busy with other people, and they said right at the beginning that's the only time they'd be looking).

It is something for everyone to keep in mind.

https://twitter.com/x/status/1643134124524224512
 
Sorry to hear you are feeling spied upon @SparksFan :(

Like @Lucyr I do rather wonder if your clinic ever look at your Libre results between appointments (mine wouldn’t). Especially as yours don’t seem particularly attentive or proactive at the lest of times!

I think if sharing the Libre data is having a negative impact on your mental health, it may be helpful to switch off the sharing between appointments?

You could always export longer-term reports before your next appointment if it would help your clinic?
 
Or, if there another team you could get a referral too? My first hospital team gave me dodgy advice and weren't very helpful, and i got a referral from my gp elsewhere and i am a lot happier with the new team.
I know what you mean though...i thought my old team would say i was 'scanning too much' with the libre. ( they tought i was 'trying too hard')
But my new team got me on dexcom which works a lot better for me and i don't have to scan!
 
Agree with Lucyr and Everyday. The odds of anybody looking at your Libre data between appointments is vanishingly small; and even for appointments they may not look at it. Especially given that, as you say, you're a very experienced T1 with over 80% TIR and HbA1c of 48-49!

I think a psychologist would say to you: Write down what *exactly* it is that you're paranoid and stressed about. What is the worst, the absolute worst, that could happen? Let your paranoia and catastrophising run wild! Write it all down ...

And then, a day or two later, when you're in a relatively calm frame of mind-- read what you've written and reflect on whether there is even the remotest chance of any of that happening. And, even if it did happen, what you could do about it.

This is a widely used technique and often works. I think, if you did this, you would sleep a lot better; and it can't hurt to try! All best wishes.
 
Last time I had a hospital appointment, which was by telephone, I mentioned something about my Libre graph and the doctor said Oh…just a minute while I log on and look…so they hadn’t even looked at it right before the appointment, or logged on before they phoned me.
 
My clinic certainly don't have time to look at my readings between the annual (13-monthly) meetings.
However, if I felt they were being overly involved, I would turn off their access. It is my data not theirs and I should grant access rather than them taking access.
 
Initially when we were prescribed Libre, giving the clinic access to our data was a condition of getting it and I somehow thought that still applied, but at the end of the day, it is no different to a BG meter in that it is primarily to help us manage our diabetes better. My concern was more about how Abbott might use the data (since they store it) rather than my consultant. In the current climate, where the clinics are really struggling with their workload, the chances of anyone looking at the data without being prompted to do so by the patient because they are having a particular problem, or during an appointment, is beyond negligible.
If I am going through a bad patch though, which happens from time to time, I hope that I don't get a letter saying that I have an appointment coming up and the consultant will see all the red on my graphs.... like currently 8% below range for the last week and most of it nocturnal hypos but with no evening Levemir on board 🙄.... so I do kind of understand @SparksFan's concerns even if they are unfounded. I think it very much depends on the relationship you have with your diabetes clinicians (although I have a very good consultant) and your own mental state and when I am struggling mentally I can sometimes see Libre as a "spy in the cab" and sometimes I will take a break from it because I know that is not healthy. After a few days of finger pricking, I am usually very much more appreciative of the benefit I get from Libre and it resets my perspective. My consultant is all in favour of taking a Libre break as and when I need to.
 
rebrascora said:
Initially when we were prescribed Libre, giving the clinic access to our data was a condition of getting it
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My local team said at the time that they were only going to look to see that we were scanning at least 7 times a day (I think that was the condition) and not at anything else except in the context of a question from us. So they obviously recognised the possible sensitivity of this kind of monitoring.

I'm sure the same is true in a practical sense everywhere because they just don't have time to look outside of specific reasons. (Especially now that ~90% of us have the things.)
 
Bruce Stephens said:
My local team said at the time that they were only going to look to see that we were scanning at least 7 times a day (I think that was the condition)
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And it's more than likely they just looked to check if anyone had just stopped using the thing rather than anything more.
 
I stopped using mine about 12 months ago (because I chose to self-fund a different CGM that talks to my pump) and no one has said anything. I guess they don't look.
 
I'm not so worried about them looking in between appts, just uncomfortable with the concept of them having my data on tap, and really dislike the idea of 'having my homework marked' when I attend. I too was told it was a condition of having it. And not just the sugar readings. The nurse said I would have to file everything; meals, carbs, insulin doses, in the Libre app otherwise I wouldn't be able to get it on the NHS. That was when the argument started, the consultant came in, and an agreement was reached. Consultant had seen the complaint I'd put in to get seen in the first place! I'm with rebrascora: Much depends on your relationship with clinic. I'd characterise mine as a mixture of abuse and neglect (given the bullying I have encountered when I get seen). The clinic has exacerbated mental health issues. Which isn't at all helpful, and not the way it is supposed to be. Appreciate some of the thoughts posted tho... Solidarity etc
 
Your nurse doesn't sound very good at her job, which is to support you with your diabetes management, not dictate to you!

I think one of the great things about this forum is that it has empowered me with knowledge and therefore confidence to manage my diabetes well but also to understand that I can't get it right all the time, so I feel a little less guilty about my not so good results.
I used to be in awe of my consultant and a bit intimidated by appointments with him and I had to really psych myself up to ask for things and explain why I want it/them, but now that I know what I'm talking about (thanks to this forum), and more importantly, he knows that I know what I am talking about, we get on much better and I feel on more of an equal footing with him. I don't generally have any contact with a DSN and to be honest, the odd time I have contacted the helpline and one has called me back, I haven't found it particularly beneficial and I have resolved the issue myself or it has just disappeared of it's own accord as sometimes issues do with diabetes.

Your nurse doesn't sound very good at her job, which is of course to support you with your diabetes management, not dictate to you!

I hope your next appointment sees a change of strategy within your clinic and/or a change of staff for the better, but as has been mentioned you can ask your GP to refer you to a different clinic.
 
SparksFan said:
I'm not so worried about them looking in between appts, just uncomfortable with the concept of them having my data on tap, and really dislike the idea of 'having my homework marked' when I attend. I too was told it was a condition of having it. And not just the sugar readings. The nurse said I would have to file everything; meals, carbs, insulin doses, in the Libre app otherwise I wouldn't be able to get it on the NHS. That was when the argument started, the consultant came in, and an agreement was reached. Consultant had seen the complaint I'd put in to get seen in the first place! I'm with rebrascora: Much depends on your relationship with clinic. I'd characterise mine as a mixture of abuse and neglect (given the bullying I have encountered when I get seen). The clinic has exacerbated mental health issues. Which isn't at all helpful, and not the way it is supposed to be. Appreciate some of the thoughts posted tho... Solidarity etc
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That is awful; if my team behaved like that, I wouldn't want to share my Libre data with them either. On the other hand, if my team behaved like that, I'd be losing sleep about it whether or not I shared my Libre data with them!

(I totally understand when you say this experience "has exacerbated mental health issues"; I was already suffering from an anxiety disorder when I was diagnosed with T1, and if my DSNs and consultant hadn't been so nice and so helpful, I would probably have had a total breakdown.)

Tdm said, "My first hospital team gave me dodgy advice and weren't very helpful, and i got a referral from my gp elsewhere and i am a lot happier with the new team." ... Sparks, maybe you could try asking your GP for a referral to a different team? Does anybody else on the forum have any experience of this?
 
SparksFan said:
I'm not so worried about them looking in between appts, just uncomfortable with the concept of them having my data on tap, and really dislike the idea of 'having my homework marked' when I attend. I too was told it was a condition of having it. And not just the sugar readings. The nurse said I would have to file everything; meals, carbs, insulin doses, in the Libre app otherwise I wouldn't be able to get it on the NHS. That was when the argument started, the consultant came in, and an agreement was reached. Consultant had seen the complaint I'd put in to get seen in the first place! I'm with rebrascora: Much depends on your relationship with clinic. I'd characterise mine as a mixture of abuse and neglect (given the bullying I have encountered when I get seen). The clinic has exacerbated mental health issues. Which isn't at all helpful, and not the way it is supposed to be. Appreciate some of the thoughts posted tho... Solidarity etc
Click to expand...

Could understand team wanting you to log everything if your bg control was poor, but it isn't so can't understand why they'd want you to if honest.
 
I suppose i am lucky as quite built up area so there were 2 teams i could access easily, and one i could only get to with a car or a lots of work.
It was pretty easy
(In my first practice, the dsn advised that my 24hr basal insulin lasted 3 days. And said other things just as wrong re injection technique, medication etc. Luckily, i can google so i knew she was wrong. We had words. The other dsn even backed her up. I was quite upset about it. But i trust my current team 100% They come up with solutions.)
 
Tdm said:
I suppose i am lucky as quite built up area so there were 2 teams i could access easily, and one i could only get to with a car or a lots of work.
It was pretty easy
(In my first practice, the dsn advised that my 24hr basal insulin lasted 3 days. And said other things just as wrong re injection technique, medication etc. Luckily, i can google so i knew she was wrong. We had words. The other dsn even backed her up. I was quite upset about it. But i trust my current team 100% They come up with solutions.)
Click to expand...
Yeah, my (pre Libre) team sent a letter to the GP which was full of inaccuracies to the practice. I mean, I didn't recognise what they were saying. It was as if the appointment was with someone else. I'm tempted to ask the GP about other options, but a stubborn part of me says, this team appeared to be cynically trying to dump patients simply by making it so hard to get an appt (I had a long run of cancellations on their part and then they just didn't send a new data so I had to submit a complaint). The one problem is that when I finally got an appt, the doctor was superb. The first good interaction with a diabetic in more than 10 years. Not kidding. But, of course, no guarantees I'll see her next time. The clinic is now lodged in my head (mental health issues from near fatal road accident, which is a another very long story) and I can't extricate it. Guess it's over to PALs again. At least that's a positive thing. Honestly, I had no input for years and things went better without them!!!!!
 
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