Freestyle Libre 2 - Dr Issues

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neosegauk

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Relationship to Diabetes
Type 1
Hi There,

My name is Richard and I have been a type 1 diabetic for over 36 years.

I recently had my hba1c check which went really well. My Dr recommended in my review the Lifestyle Libre 2 as it could help get my levels even better.

I've been using them now since early December 2022 and they've really helped me. It's started to improve my levels and I honestly love it

I went to get my prescription renewed for another libre 2 (had to wait 5 days) and after I asked my pharmacist they said no prescription had come from my Drs. I contacted my Drs and they said I couldn't have it anymore and I had to instead be referred to a diabetic clinic if I wanted it.

Apparently there's a wait till July to see anyone in my local diabetic clinic.

Is this right? Can my Dr really just stop it like that? I'm quite upset as this has been a real game changer for me helping me manage my diabetes better. :(

Has anyone else had any issues like this and if so what did you do?
 
neosegauk said:
I contacted my Drs and they said I couldn't have it anymore and I had to instead be referred to a diabetic clinic if I wanted it.

Apparently there's a wait till July to see anyone in my local diabetic clinic.

Is this right? Can my Dr really just stop it like that?
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They can, but obviously they shouldn't. If you're in England your GP isn't correct: in England, a GP may prescribe Libre 2 just as they can (say) insulin. (There are some CGMs that can only come from a diabetes clinic but Libre 2 isn't one of them.)

Also (in England) the NICE guidelines are clear: a CGM is recommended for everyone with type 1 diabetes.

So (if you're in England), it's worth pressing your GP further, and contacting Partha Kar if that fails.

(Other countries in the UK have slightly different regimes.)
 
Bruce Stephens said:
They can, but obviously they shouldn't. If you're in England your GP isn't correct: in England, a GP may prescribe Libre 2 just as they can (say) insulin. (There are some CGMs that can only come from a diabetes clinic but Libre 2 isn't one of them.)

Also (in England) the NICE guidelines are clear: a CGM is recommended for everyone with type 1 diabetes.

So (if you're in England), it's worth pressing your GP further, and contacting Partha Kar if that fails.

(Other countries in the UK have slightly different regimes.)
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Thanks for the response. I found it odd how the Dr initially prescribed it me. Like you say if they couldn't then really it shouldn't let them do it.

Can I be super cheeky and ask where the NICE guidance is? I'm going to try and get in the see my Dr on Monday to sort this.
 
Bruce Stephens said:
I doubt it'll be any problem. The change in guideline was only last April. Before then it was necessary to go through hospital teams (and after then some areas wanted to keep the same procedures), so there's a good chance your GP just wasn't aware.

https://twitter.com/x/status/1624746775172063238
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I think one of the issues maybe my Drs I don't have an official doctor it changes constantly and I'm wondering if it's another Dr who's made the wrong decision stopping it. Kinda frustrating but hopefully with all the info you've given me I can sort it. Again thank you so much for the help here. I will update you tommorow with what they will be doing next. Hopefully re instating the libre 2.
 
Well guys, what a day..... My Dr unfortunately wasent great and makes me wonder what other diabetics are facing trying to get a flash glucose system.

He said it doesn't matter what NICE says as Manchester has its own set of guidance they follow. I said but the whole point of NICE is that you don't create your own rules and practices, instead it's one set you follow.

He wouldn't budge and said I was misinformed and it wasn't a DR who should prescribe the Libre 2 but is the decision of a diabetic clinic.

I had an argument with him saying that surely this must be old methodology here and he said it's not changed and he won't prescribe it so we are at an impasse. I shared all the NICE guidance etc with him.

I immediately contacted Dr Partha Kar who said what he's said is utter nonsense and he got the NICE guidance updated to stop doctors doing things like this. Luckily he is going to help me get this sorted with my Dr and said it's Drs/GPs like mine we need to call out and get sorted.
 
what a blumin hassle for you. So glad you are getting help to get what you are entitled to. Let us know how the fight goes!
 
Will keep you all updated but looks like many people struggle to get them even though they should be eligible. I do wonder if local authorities have out of date guidance they are following still. Shows how time consuming and money wasting stuff like this is on the NHS. If they have something that's official from the top they should follow it.

Hopefully Dr Partha Kar can help here. Should see my epic email I've sent to my GP surgery haha
 
neosegauk said:
I do wonder if local authorities have out of date guidance they are following still.
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Yeah they do. My local area has its own set of rules they follow that don’t match the NICE guidelines and mean I’m not eligible for libre yet i would be if i lived somewhere else.
 
Lucyr said:
Yeah they do. My local area has its own set of rules they follow that don’t match the NICE guidelines and mean I’m not eligible for libre yet i would be if i lived somewhere else.
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Should contact Dr Parthar Kar. He looks to be sorting it for a lot of people
 
neosegauk said:
Should contact Dr Parthar Kar. He looks to be sorting it for a lot of people
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He only seems to help T1s from what I’ve seen, haven’t seen any comments from him on T2
 
Lucyr said:
He only seems to help T1s from what I’ve seen, haven’t seen any comments from him on T2
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I'd still ask.

It may be that someone else is more interested in prodding regions to follow the guidelines for T2 (and he can pass on the request). Or it may just be that the guidelines for T1 are nice and straightforward so it's simpler to get a result.
 
So it's gotten a bit weirder now. My Dr re contacted me saying the local authority guidance they are following seems out of date. He was going to chase this up to see why the guidance existed and if it did should it not fall inline with the NICE guidance. I again re iterated to him no local authority guidance should exist for this, like blood glucose meters you can just prescribe me lancets and sticks, this is the same.

He kinda agreed and in assuming Dr Partha must have contacted him to get this sorted.

Anyway my Dr re contacted me again on Tuesday saying no matter what avenue he goes down they are all directing him to tell me I have to get an appointment with my Diabetic clinic to get them to authorise the libre 2 on prescription and the guidance they are following is not out of date.

I've again questioned him on this and had to re contact Dr Partha in relation to it.

I wouldn't mind but there's a huge wait time on appointments at my diabetic clinic (July maybe when I can get an appointment) and why waste their time? The Drs have the ability to prescribe it and that appointment could be given to a diabetic who needs help.

The NHS is such a complex mess, with their own rules etc. One set of rules is all it should be in this case.

Hopefully Dr Partha helps heere....

Does anyone have any recommendations in any other routes I can take?

It's as if my Dr is scared of not following their own made up guidance incase he gets in trouble...
 
Well, it looks like, long term, the local situation may be being looked into, so you may have helped others. Its just a shame things havdn't moved on much for you.
As for diabetic clinic appointment, does this need to be face to face? Could it be a telephone appointment? May it be worth contacting them to see if they can prescribe it without waiting july appointment?
 
Tdm said:
Well, it looks like, long term, the local situation may be being looked into, so you may have helped others. Its just a shame things havdn't moved on much for you.
As for diabetic clinic appointment, does this need to be face to face? Could it be a telephone appointment? May it be worth contacting them to see if they can prescribe it without waiting july appointment?
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That's a good shout. Will try that tommorow and see what my Diabetic clinic do. Also contacted Dr Partha. Will see what happens. Really messy though.
 
So what happens to all the type1's who are not under a clinic? Does this mean that they are not entitled to sensors?

If you look on line for your area's drug tariff have a look on there and see what it says about CGM and Libre prescription.
 
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