Libre Funding

[Bruce Stephens]

I was diagnosed 4 April and had a libre by 20 April I figured most type 1 had them already?

No, the rate is around 30% now (based on the number of prescriptions and the number of people with Type 1, I think, so if many people with Type 2 have them (as they might) then maybe the proportion of Type 1 with them will be a bit lower). The criteria require suitable education and so on and for someone newly diagnosed that's presumably easier to be sure of.

I very much hope it's becoming routine that newly diagnosed people get prescribed the Libre. (Make sure you also know how to use test strips and manage yourself with those, obviously, but the Libre (when it works) is much less annoying.)

 

[everydayupsanddowns]

I was surprised to hear it’s taken so long to get a libre is this really common? I was diagnosed 4 April and had a libre by 20 April I figured most type 1 had them already?

I think you struck lucky! There is only funding for approx 20%-25% of the T1 population, and the national criteria are designed to aim this funding at those who stand to benefit most.

And before the current funding arrangement was put in place, almost no one had the Libre on the NHS, despite it being ‘prescribable’ for more than a year!

 

[James B]

That’s astonishing it’s so much easier to just scan yourself rather than take the full kit out with you (which I do in case my phone runs low on battery) set it all up but the rubbish in a bag which probably takes 5 mins. I don’t think I’d have bothered scanning myself when out without the libre. Everyone should get them type 1 and 2 it’s just so much easier to use you don’t have to write a diary out as it’s all in the app they should set a date where 80% of the population have them

 

[grovesy]

That’s astonishing it’s so much easier to just scan yourself rather than take the full kit out with you (which I do in case my phone runs low on battery) set it all up but the rubbish in a bag which probably takes 5 mins. I don’t think I’d have bothered scanning myself when out without the libre. Everyone should get them type 1 and 2 it’s just so much easier to use you don’t have to write a diary out as it’s all in the app they should set a date where 80% of the population have them

Type 2 are not all prescribed meters let alone Libre!

 

[Robin]

There’s a list of criteria that you are supposed to match before you get the Libre. Some hospitals seem to manage to fit the criteria to their patients more easily than others. I’m waiting to see if I get one, my doctor is sympathetic, but she said she has to make out a case for it before the committee, who have the final decision as to which patients will get them and which won’t.

 

[Kaylz]

Type 2 are not all prescribed meters let alone Libre!

Depends where you are, Type 2's on insulin are able to have the Libre prescribed up here in Scotland

 

[Kaylz]

I've noticed a lot of newly diagnosed Type 1's posting on Facebook groups that they've obtained the Libre on prescription straight off the bat, I don't really think it's fair on those that have been fighting to get it for some time now as they have endured much more than anyone and they also seem to think its a magic bit of kit that stops any finger pricks which of course it doesn't, I'd still recommend newbies to learn how things work the old school way through finger pricking and anyway one of the criteria is pricking at least 8 times a day xx

 

[Bruce Stephens]

I don’t think I’d have bothered scanning myself when out without the libre. Everyone should get them type 1 and 2 it’s just so much easier to use you don’t have to write a diary out as it’s all in the app they should set a date where 80% of the population have them

The cost is a bit less than £1000 per patient per year. (Test strips also cost, of course.) I can imagine many people who're Type 2 wouldn't get much out of it, and it might even work out as a negative (because they'd end up being stressed when really they're doing fine with minor diet changes).

I could imagine it being offered to everybody with Type 1 (there's somewhere around 300,000 of us in the UK, so that's £300 million a year or thereabouts), but we're less than 10% of all diabetics and £3 billion a year doesn't seem likely.

(Though even getting it to everyone with Type 1 might take long enough that it'll be partially overtaken by closed loop pump and CGM systems. Presuming they perform well enough they'll likely show they're worth the money.)

 

[MarkGeordie]

I seem to have acquired 6 sensors in a week. The hospital pharmacy provided me with 2 and a letter for the GP to add them to my repeat prescription.

I rang the surgery and they asked if I could take a photograph of the letter on my phone and email it across so I didn’t have to go into the surgery. Which I did and added a note I needed it adding to my repeats.

They have added it and gone and issued a prescription too for 4 of them and sent direct to the pharmacy.

 

[freesia]

I seem to have acquired 6 sensors in a week. The hospital pharmacy provided me with 2 and a letter for the GP to add them to my repeat prescription.

I rang the surgery and they asked if I could take a photograph of the letter on my phone and email it across so I didn’t have to go into the surgery. Which I did and added a note I needed it adding to my repeats.

They have added it and gone and issued a prescription too for 4 of them and sent direct to the pharmacy.

Wow. Thats good. I'm type 1 on a 6 month trial and hoping to be given them at the end of it. My surgery only prescribes 2 per month.

 

[Kaylz]

Wow. Thats good. I'm type 1 on a 6 month trial and hoping to be given them at the end of it. My surgery only prescribes 2 per month.

you could query that, I only got 2 a month but called and spoke to a GP who agreed to issue 4 per prescription so I wasn't ordering so often, still limited to 26 per year on prescription of course but it's great not having to order so often xx

 

[freesia]

you could query that, I only got 2 a month but called and spoke to a GP who agreed to issue 4 per prescription so I wasn't ordering so often, still limited to 26 per year on prescription of course but it's great not having to order so often xx

I think its part of the contract for the trial. Fingers crossed, i'll be okayed at the end for me to keep having them as i'm more aware of whats going on and that helps me feel a bit more relaxed about dealing with it. Maybe then i'll ask.

 

[MarkGeordie]

Yeah I think the reasoning that they prescribed 4 was because the letter said to do it this way to avoid having to order so frequently.

 

[SB2015]

Yeah I think the reasoning that they prescribed 4 was because the letter said to do it this way to avoid having to order so frequently.

I get four at a time. As you say it just means that I don’t have to order so often. This applies to all my meds which are done for 2 months.

 

[KARNAK]

I don`t get any they say my control is too good, although mostly due to hypo`s. 🙄

 

[Bruce Stephens]

I don`t get any they say my control is too good, although mostly due to hypo`s.

A recent webinar on hypos, Spotlight on Hypoglycaemia mentions that CGM (or FGM) can help significantly in understanding and then reducing the chances of hypos. (I think the national criteria for Libre underplays the potential benefit of Libre on helping to manage hypos. I found (and find) it enormously valuable. I can see some people definitely need CGM (with alarms) but even with alarms the information is very helpful.)

 

[everydayupsanddowns]

Glad you've got hold of them @MarkGeordie. Hope you get on well with them 🙂

 

[MarkGeordie]

Glad you've got hold of them @MarkGeordie. Hope you get on well with them 🙂

Thanks.

Just glad one thing has been ticked off the list at the moment.

 

[rebrascora]

Well I chased up my diabetes clinic about my Libre situation..... took several phone calls because you have to leave a message and then they ring you back but each time they rang, it only gave 3 rings before hitting my voice mail and despite sitting all morning with my phone in my hand after missing the first call, they rang whilst I was on the loo! Arrgh!! Anyway, I managed to speak to the nurse in charge of the Libre lists on the forth attempt and she confirmed that my name is on the list for permanent prescription (not trial) and whilst nothing is happening at the moment due to Covid 19 and being unable to do face to face training, I will definitely be getting it and I will hear in due course. I did mention that I had heard that online training was happening in the current pandemic but it seems our area are not signed up for that at the moment. At least I now know where I stand and it is just a question of being patient until I hear from them and so delighted that I am not just on the trial list but up for permanent prescription.