Libre NHS criteria

Just thought I'd weigh in on how I am personally am extremely fortunate especially when it comes to the Libre as someone not originally from the UK and still regularly visit my home town and keep using the healthcare system there because that's where I was diagnosed and that's where I spent the first 24 years of my life. They treat me and prescribe me medication with the full knowledge that I no longer live there and arrange appointments based on my visits through my mother to whom I signed over the full rights for arranging my appointments and picking up my medication.
So, when I went back for the summer last year and informed them of my recent struggles with my blood sugar management leading to vision problems and all the rest of it, they informed me of this new thing that makes it easier to manage it called Freestyle Libre and asked me if I was interested in trying it. Me being a recluse that has never bothered going to any of those social gatherings for diabetics or really had any friends with it or until recently followed any forums or news sites regarding it, I had never heard of it but was intrigued and decided to try it. The nurse then leaves the room, comes back with a bag of 6 sensors not counting the one I was just about to put on and a reader, gave it to me free of charge(similar system to the NHS) telling me that it should be enough for a while and then just ask for more. Due to having signed over the rights to my mother to allow for her to pick up my medication, she now gets them for me sent to her house and then have them sent to me in the post to my flat here in London. The only payment(excluding the taxes to cover the healthcare system, obviously) is sending the package in the post, rather than buying the sensors privately or having to go to ASDA or however it works here.
The following picture is what I received over Christmas when I went back.

EllieM said:

Now that's interesting. It was about a year ago that I developed the allergy so I wonder if it was the new formulation that was the problem? Abbott were very willing to replace sensors, even send me a new reader, but extremely unwilling to discuss the elephant in the room, the allergy. I certainly told them about it, they just suggested I talk to a doctor....

I have one sensor left, which I'll use soon, before it expires. I live in hope that allergy will have abated, but realistically it seems unlikely. Though I might ask Abbott NZ when they last changed the glue.... (I doubt very much they'll answer, as they don't seem to want to admit that some people have issues.)

Click to expand...

Hi again Ellie,
Through my profession I have access to key folks within Abbott working on this.
Let me know if you have specific questions you want answers to and I will see what I can do to get them for you?

Thought I would update you after my meeting with my G.P. this morning. Basically she agreed that it is a post code lottery as to who will get the Libre on the NHS. More affluent areas are getting it but poorer ares such as the North East will almost certainly not get it. She informed me that she had contacted one of the specialists to see if I qualified by the fact that I blood tested at least 8 times a day, which I do using Libre, but was told that the blood testing had to be finger prick testing which I only rarely do these days. This would mean I would have to stop using Libre and go back to painful testing, just to try and get the Libre. This I am not prepared to do. Even though she agreed that my control is better than it ever has been and she agreed this was down to me using Libre, I stood virtually no chance of getting this on the NHS. I wish the Government had never agreed for the Libre system to be made available on the NHS as I believe it has given false hope to hundreds if not thousands of Type 1 diabetics.

Copernicus said:

More affluent areas are getting it but poorer ares such as the North East will almost certainly not get it.

Click to expand...

Not necessarily. I live in one of the most deprived areas of the U.K. (we currently have Objective One status) and I have Libre on prescription.

Can I ask which part of the country you live in Mel and what conditions did you have to meet in order to get the Libre funded by your CCG

I’m in South Wales. However healthcare is a devolved thing, so the Sennedd in Cardiff makes the decisions rather than Westminster. These are our prescribing guidelines:

Thanks for that Mel, that's even stricter than the guidelines in my area which is Northumberland.

Copernicus said:

Thanks for that Mel, that's even stricter than the guidelines in my area which is Northumberland.

Click to expand...

You’re welcome. I qualified under the hyperglycaemia one, and because I brought my HbA1c down by more than 27 on a three month trial I’ve been prescribed it long term.

I have a Libre prescription in Epsom. Just moved to West Sussex and also got the Libre on prescription there. Just required a letter from my treating consultant for the latter.

Sadly in Worcs it is not available on prescription

Why is the UK and its NHS such a Wild West regarding who qualifies for a Libre or not?
Treating chronically ill people casually like this is both very arrogant and ignorant at worst.

Hotpot74 said:

Ordered 3 Libre sensors from Asda on Wednesday and picked them up Thursday ... They only cost £44 too and I've already been questioning Libre about why/how this is happening ... As of yet they haven't replied (plus Asda said there is no cap on his many I can order!) Why not contact your local Asda, I was the first person ever apparently in my area to do so, and cancel your Abbot order.... Save money too

Click to expand...

Was that 44 for 3. Or was that per sensor?

Celsus said:

Why is the UK and its NHS such a Wild West regarding who qualifies for a Libre or not?
Treating chronically ill people casually like this is both very arrogant and ignorant at worst.

Click to expand...

Because there's no concerted nationwide campaign in my opinion and people aren't personally bugging their CCGs on a regular basis, and their MPs too.
I feel (tho I'm probably wrong) that our local BBC radio helped with their Libre news article which snowballed by the end of the day, as the CCG commissioned it within a month of that knowing BBC Look North were likely to pick the baton up next.

At the end of the day a CCG is there to commission medicines, the Regional Medicines Optimisation Committee RMOC have set the recommended criteria for prescription so there is a reason for each and every T1 to complain to their CCGs customer relations team if its not YET available in their area.

I'm still trolling a few CCGs and the prime minister about it on twitter and I'm 'lucky' enough to have obtained one.

Celsus said:

Why is the UK and its NHS such a Wild West regarding who qualifies for a Libre or not?
Treating chronically ill people casually like this is both very arrogant and ignorant at worst.

Click to expand...

It is the Wild West at the moment. It's such a new thing at the moment that different areas are taking different approaches to it. Devolved parts of the country, like Wales and Scotland (Ireland too, maybe, but am not sure?) are being fairly liberal with it. I'm in NHS Lothian and it's basically if you're T1 and want it, you'll get it. Borders and Forth Valley seem to be the same.

Stitching together what was said in formulary committee papers and by a consultant at an induction meeting, the thinking seems to be that although there's limited formal clinical data, docs have loved having self-funders turning up with printouts of agp graphs and dailies, because it's way more usable info than an a1c alone, and one consultant who played a part in the prescription decision process in my area told me they know that T1 is difficult and if they were T1 they'd be using it to make life easier, so they couldn't in good faith deny it to people, so they were going to do it despite lack of formal data.

So, you self-funders out there, it's not going to do any harm to make sure you print off your agp graphs etc. and take them along to reviews, and tell them how much more motivated and engaged you feel. That sort of feedback makes a difference.

kev-w said:

I'm still trolling a few CCGs and the prime minister about it on twitter and I'm 'lucky' enough to have obtained one.

Click to expand...

Next step in the campaign will be to get Theresa wearing a blucon transmitter as well!

Scott-C said:

Next step in the campaign will be to get Theresa wearing a blucon transmitter as well!

Click to expand...

Showing the NHS how to save money on a real CGM with hypo alarm kind of thing?

Saves a hypo during a cabinet meeting. I'm quite apolitical but some of her policies make me wonder about hypos

kev-w said:

Showing the NHS how to save money on a real CGM with hypo alarm kind of thing?

Saves a hypo during a cabinet meeting. I'm quite apolitical but some of her policies make me wonder about hypos

Click to expand...

I pay very little attention to politics as they're all a bunch of lying ferrets, but when I've caught Theresa on the telly, I've had a look for hypo signs.

I'm surprised she isn't on dexcom or blucon. Her advisers are obviously not up to speed.

Maybe we should send her an invite to join the forum...

Scott-C said:

I pay very little attention to politics as they're all a bunch of lying ferrets, but when I've caught Theresa on the telly, I've had a look for hypo signs.

I'm surprised she isn't on dexcom or blucon. Her advisers are obviously not up to speed.

Maybe we should send her an invite to join the forum...

Click to expand...

GCHQ are probably watching on her behalf!

I think she's in her 5th year or so of having sugar and cynical Kev expects her to do an Alex Ritson (BBC presenter who had a hypo whilst on air, a good guy) whilst on public duties at some point, and that won't help the illnesses 'image' much, a bit like the other sides Ms Abbot tbh.

As far as the CCGs go, if those without it don't make a noise, then the CCG by its very nature will resist commissioning, so by being as persistent as their diabetes, making a nuisance is the way forward for us all about the NHS post code lottery.

It's bl**dy worth having.

urbanracer said:

GCHQ are probably watching on her behalf!

Click to expand...

Lol, I wouldn't be surprised given the number of low carbers trying to put the metformin and cereal makers out of business - a patent threat to the orderly working of society!