Libre on NHS

JoeT1

Well-Known Member
Messages
277
Type of diabetes
Type 1
Treatment type
Insulin
The other thing is how suitable for me it really is.

I have a couple of ways I could fund it. But I have not been able to get anyone medical to sign off on it... and the amazingly super awesome people who are offering to help fund it want that to happen before we can actually do it. So I asked loads but it was always "well let's wait and see how we're doing shall we?"

(I love that "we" thing they do, like my **** body is going to make their toes fall off... I wish...)

But the point is, I get the feeling there are basically two groups of people who aren't allowed to have it people who are so awesome they don't need it, which is definitely not me, and people who are so **** it wouldn't help which I fear is very much me. But the thing is that between those groups is a really narrow band of people they will probably allow to have it, no matter how they fund it. I could probably just pay for it, even, but I have no idea what anyone's attitude to that would be.


Who cares what peoples attitude would be to you self funding it. No medical professional is going to be angry or think it's a bad idea for someone to be able to check their bloods more regularly. Nonsense.
 
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SockFiddler

Well-Known Member
Messages
623
Type of diabetes
Type 2
Treatment type
Tablets (oral)
My DN last week said I was "borderline obsessive" for being a T2 who tests their bloods, sometimes, 4 times a day and that, if I were still testing to that degree at my next appointment in July (and was foolish enough to tell her about it), she'd refer me for psychiatric support.

So, yeah, medical professionals do think testing more regularly is a bad thing.
 

tim2000s

Expert
Retired Moderator
Messages
8,934
Type of diabetes
Type 1
Treatment type
Other
The other thing is how suitable for me it really is.

I have a couple of ways I could fund it. But I have not been able to get anyone medical to sign off on it... and the amazingly super awesome people who are offering to help fund it want that to happen before we can actually do it. So I asked loads but it was always "well let's wait and see how we're doing shall we?"

(I love that "we" thing they do, like my **** body is going to make their toes fall off... I wish...)

But the point is, I get the feeling there are basically two groups of people who aren't allowed to have it people who are so awesome they don't need it, which is definitely not me, and people who are so **** it wouldn't help which I fear is very much me. But the thing is that between those groups is a really narrow band of people they will probably allow to have it, no matter how they fund it. I could probably just pay for it, even, but I have no idea what anyone's attitude to that would be.
The first and most important thing to learn about diabetes is that it's yours so do whatever you want with it. Use the internet and journals, read about stuff, then if you think it will benefit you, based on the evidence available, just do it. I've, by hook or by crook, got hold of various diabetes treatments that either you can't get in the UK, you can't get on prescription for Type 1 under NICE guidelines to see what the effects would be, or that the esteemed medical profession decided it didn't want me to have, but I found anyway (med devices included). Given the Abbott Libre is none of these, and is a freely available retail product, why wouldn't you do it if you can afford it? Yes, to get it funded the very cool people who are offering to fund it may need additional medical sign off, but if you can and you can afford to, why wouldn't you?
 

fairylights

Well-Known Member
Messages
185
Type of diabetes
Type 1
Treatment type
Pump
Feedback from my work colleague on Wednesday after he's been to the course tomorrow should make it clearer. Actually our other T1 in the office has told me she's going to a training session too.

We don't know if they've been selected because of some underlying facts specific to them eg a1c, general control issues, but the wording of the announcement kinda suggests they're basically inviting every T1 in Lothian along in batches - I'm still waiting for my letter.

I wouldn't imagine they'd invite people along to a course just to tell them they're not going tp get it, but, like I say, I just don't know at the moment whether those who get letters have been chosen because of underlying issues or whether it's a more general roll out.

Should be clearer on Wednesday once I hear back from them.

I am in Lothian also and received a letter at the weekend. I believe I fit the eligibility criteria, and will be going on the training session in March. (Eligibility criteria are on MDI or pump, and have been on DAFNE or similar, and agree to share info with HCPs).
 
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JoeT1

Well-Known Member
Messages
277
Type of diabetes
Type 1
Treatment type
Insulin
My DN last week said I was "borderline obsessive" for being a T2 who tests their bloods, sometimes, 4 times a day and that, if I were still testing to that degree at my next appointment in July (and was foolish enough to tell her about it), she'd refer me for psychiatric support.

So, yeah, medical professionals do think testing more regularly is a bad thing.


Bare in mind this person is a Type 1 Diabetic
 

SockFiddler

Well-Known Member
Messages
623
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Appreciated. But there's no reason to expect T2s to want less info than T1s get on a daily basis, granted there's insulin calculations and whatnot to be done. The point I poorly failed to make was, with the number of (expensive) complications regularly faced by uncontrolled T2's (and by that I mean, people who follow the prescribed model and only use HbA1c to monitor BG), the very least we can try as a new approach is encourage BG monitoring, no matter the diabetes type in question - particularly if they're self-funding.

With that in mind, it's somewhat insulting for a DN to imply that I'm borderline bonkers for wanting to be aware of (and therefore in control of) my BG more than twice a year / annually.

Your point is well-taken, though: we T2s face the awful long-term consequences, but T1s have far more immediate management concerns to consider.
 
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Scott-C

Well-Known Member
Messages
2,474
Type of diabetes
Type 1
I am in Lothian also and received a letter at the weekend. I believe I fit the eligibility criteria, and will be going on the training session in March. (Eligibility criteria are on MDI or pump, and have been on DAFNE or similar, and agree to share info with HCPs).

Yay, got home from work tonight to find my letter had arrived. It all looks quite promising, like the bit which says, "We are conmitted to ensuring that all eligible patients get access to the Libre as soon as possible.."

The eligibility requirements seem much less strict than elsewhere, almost like turn up, do the course and we'll prescribe it.

I can't imagine they'd go to all this bother of setting up training courses and then turn round and say you're not getting it.

Got myself booked in early March. Won't be convinced till I've got the prescription in my mitts, but am already thinking what other things I can do with that spare 100 quid a month!
 

therower

Well-Known Member
Messages
3,922
Type of diabetes
Type 1
Treatment type
Insulin
@Scott-C . Things looking good. Hope you get the prescription.
I can take 50 quid off your hands if you're struggling ( cash or cheques) each month. :):):).
 

Scott-C

Well-Known Member
Messages
2,474
Type of diabetes
Type 1
@Scott-C . Things looking good. Hope you get the prescription.
I can take 50 quid off your hands if you're struggling ( cash or cheques) each month. :):):).

Yeah, it's a bit of a surprise, has just come out of the blue.

Was having a sketch at the Lothian Joint Formulary website, and they've got a couple of meeting minutes discussing it. One says that there's sparse clinical data on it, but it looks like they're just going to give it a go anyway!

Link below, don't know if it will provide any clues or pointers for the direction of travel in other areas - looks very much like some areas are just biding their time to see what others do, although obviously health is devolved in Scotland, so the politics of it all maybe has a different complexion to down South.

http://www.ljf.scot.nhs.uk/Search/Results.aspx?k=Libre

Sure, I'll sub you 50 quid - I expect you dexcom guys always need a hand paying for those transmitters which peg out after a few months!
 

therower

Well-Known Member
Messages
3,922
Type of diabetes
Type 1
Treatment type
Insulin
@Scott-C . Sounds promising for you.
I'm using the G4 so I'm hoping to get close to a year from the transmitter.;)
Only hope is that people who get the libre make the most of what it offers.
As we know getting information and using information can be totally different things.
I can see you setting up shop to modify people's libre's to be as good as yours.:):):).
 

Draco16

Well-Known Member
Messages
182
Type of diabetes
Type 1
The other thing is how suitable for me it really is.

I have a couple of ways I could fund it. But I have not been able to get anyone medical to sign off on it... and the amazingly super awesome people who are offering to help fund it want that to happen before we can actually do it. So I asked loads but it was always "well let's wait and see how we're doing shall we?"

(I love that "we" thing they do, like my **** body is going to make their toes fall off... I wish...)

But the point is, I get the feeling there are basically two groups of people who aren't allowed to have it people who are so awesome they don't need it, which is definitely not me, and people who are so **** it wouldn't help which I fear is very much me. But the thing is that between those groups is a really narrow band of people they will probably allow to have it, no matter how they fund it. I could probably just pay for it, even, but I have no idea what anyone's attitude to that would be.

Odd that they would refuse to let you use a freely and legally available product that you're paying for, when at the same time they'll prescribe you enough insulin (a restricted product) to kill a herd of wildebeest!

Your bs numbers are very good in themselves; Libre would give you the insight to be more confident and ambitious in how you can achieve those numbers, without having to curtail your life so much.
 

Draco16

Well-Known Member
Messages
182
Type of diabetes
Type 1
oh, other thing to mention was at consultant appointment last week, he said the breakeven point on strips v libre was someone testing 6-8 times per day.

I said that must be nearly all T1s - he said sadly not...
 

NoKindOfSusie

Well-Known Member
Messages
427
Type of diabetes
Type 1
Treatment type
Insulin
I test a lot more than six times a day, does that make me an idiot or a weirdo because it must be one of the other...
 
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peter mark

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Insulin
I have been using the electronic patch since November last year it is expensive gives the doctors lots of information and might be signed off by November for prescription I find it useful as newly diagnosed type one
 

Draco16

Well-Known Member
Messages
182
Type of diabetes
Type 1
I test a lot more than six times a day, does that make me an idiot or a weirdo because it must be one of the other...

That’s a great Freudian slip there! Indeed you are correct it makes you eminently sensible.

I recall the Libre tells you how many scans you do each day, which from memory I was at around 35-40, I certainly wouldn’t want to put my fingers through that (or paying that as the NHS)! Plus the Libre graphs fill in the bits in between.

I recall a few years ago a consultant mentioning CGM to me but making it sound difficult and expensive, so I forgot about it. I actually saw Libre on a TV ad a couple of years ago: 30 of the most life changing seconds of my life as it turns out! I wish every T1 could get access...
 
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NoKindOfSusie

Well-Known Member
Messages
427
Type of diabetes
Type 1
Treatment type
Insulin
to get it funded the very cool people who are offering to fund it may need additional medical sign off, but if you can and you can afford to, why wouldn't you?

Because that would mean going to see the SHUDDER clinic, and I am barely on speaking terms with them.
 

Scott-C

Well-Known Member
Messages
2,474
Type of diabetes
Type 1
I am in Lothian also and received a letter at the weekend. I believe I fit the eligibility criteria, and will be going on the training session in March. (Eligibility criteria are on MDI or pump, and have been on DAFNE or similar, and agree to share info with HCPs).

A little update - just spoke to a workmate who went to his training course last night. He'd expected there to be only a dozen or so people, but it was full house, dozens of people, they handed out readers and a sensor, the senior consultant in charge said that they'd been surprised by how liberal the supervising Lothian Formulary had been on the terms for it being prescribed, the clinics would be writing to each patient's GP over the next week or two recommending that the GP prescribe.

So, it's looking like a general roll out to anY T1 in NHS Lothian - if you want it on prescription, you'll get it.

Don't know enough about how the NHS works to say, but I wonder if there's still a chance of some GPs being antsy and not following the consultant recommendation - maybe just me being paranoid till I've got the prescription!

Here's hoping other parts of the country follow what seems to be shaping up as a progressive and front-running new regime.