Competition for the Freestyle Libre!

[Jonathan_15Jan1969]

The below is is the reply from my CCG regarding my enquiry of availability for the Libre. My hopes were raised then dashed in the space of a few months.
Looks like another decision made by none diabetics for diabetics.
Perhaps this Sugarbeat will be an affordable alternative assuming it's better or as good as.

'The Freestyle Libre equipment has not shown to be cost effective, and it's availability on prescription has not been recommended by NICE and it will not therefore be available on prescription in East Staffordshire. There is currently insufficient evidence to demonstrate it improves control of Diabetes for patients, and other systems which are proven and are available at considerably less cost to the NHS are available on prescription. The decision will be reviewed of there is new evidence about the equipment's effectiveness or if there is a significant reduction by the manufacturer in cost'

 

[Northerner]

There is currently insufficient evidence to demonstrate it improves control of Diabetes for patients, and other systems which are proven and are available at considerably less cost to the NHS are available on prescription.

I'd challenge that 'other systems' are considerably cheaper. When using a Libre I hardly use any test strips - I'd normally use about 100 in 14 days, which costs the NHS about £30. A Libre gives me much more information and would cost the NHS £35. Whilst it may not improve my HbA1c, which has always been good, it definitely improves my management of my blood sugar levels by warning me of impending lows, and indicating when I need to make timing adjustments to my insulin doses. This leads to a smoother line, and reduces my risk of expensive complications.

They just don't get it, do they?

 

[Greyhound Gal]

Totally short sighted as usual. I bet if East Staffs aren't providing them, East Cheshire won't either.
I'm spending my Christmas money this year on 2 new sensors

 

[Sally71]

We had clinic yesterday, I'm not expecting anything regarding the Libre, but we were lucky and got the lead consultant yesterday (great woman who really knows her stuff and doesn't mince her words!). She said she's going to see someone very soon to argue the case for prescribing Libres. They won't get them for everybody, and the Libre hasn't been around long enough to prove its worth to a lot of people, but she's hoping to use certain patients as examples. My daughter's HbA1c is 55 (7.2). Has been the same the last twice and before that was steadily 51-53 for pretty much the last 4 years or so, apart from one ridiculously low one when she was going through a period of lots of nighttime hypos that we hadn't picked up on. (Probably pre-Libre.) I'd prefer her to be below 50, although am slowly coming to the conclusion that that probably isn't possible at the moment, and was gutted when it crept up 2 points in the summer and hasn't come down again! The consultant, however, is dead impressed, she said to keep it that rock steady when my daughter is now fully in the throes of puberty is pretty amazing! (Because puberty hormones stop insulin from working properly, which means usually everything goes completely crazy for a couple of years during this time, and for some reason it's worse in girls. Certainly my daughter's insulin requirements have shot up in the last few months, full pump now only lasts 4 days instead of 6 😱)
So I'm actually feeling quite pleased with myself this morning And this lady REALLY doesn't mince her words, if she's happy then it must be good, if she thought we weren't putting enough effort in then she'd definitely let us know! 😱

As the consultant bothered to tell me all this then presumably she wants to use my daughter as one of her examples, which means maybe we might have a chance of being offered the Libre on prescription. We'll wait with bated breath!

 

[Northerner]

As the consultant bothered to tell me all this then presumably she wants to use my daughter as one of her examples, which means maybe we might have a chance of being offered the Libre on prescription. We'll wait with bated breath!

Ooh! I do hope so Sally! 🙂

 

[Matt Cycle]

The below is is the reply from my CCG regarding my enquiry of availability for the Libre. My hopes were raised then dashed in the space of a few months.
Looks like another decision made by none diabetics for diabetics.
Perhaps this Sugarbeat will be an affordable alternative assuming it's better or as good as.

'The Freestyle Libre equipment has not shown to be cost effective, and it's availability on prescription has not been recommended by NICE and it will not therefore be available on prescription in East Staffordshire. There is currently insufficient evidence to demonstrate it improves control of Diabetes for patients, and other systems which are proven and are available at considerably less cost to the NHS are available on prescription. The decision will be reviewed of there is new evidence about the equipment's effectiveness or if there is a significant reduction by the manufacturer in cost'

I'm in North Staffordshire and I spoke to my DSN yesterday and she said they along with the consultant are compiling/have compiled a report for the CCG on who (not individuals but groups of people who would fit a criteria) and why they think may benefit from using a Libre. They're not expecting anything back from the CCG until early next year. Of course the CCG may simply turn round and say get lost but until then it's fingers crossed. In the meantime for those who haven't already got one the clinic are allowing people a reader and one sensor to trial it.

 

[Jonathan_15Jan1969]

Not intending to take this thread off on another tangent. I will be keeping my eyes out for the Sugarbeat system and perhaps it will be a good competitor, a better or equal system but more affordable to the average person and maybe cause the costs of Freestyle to be lowered. Have to find a bright side.

Regards the Freestyle, the simple fact is that only diabetics can truly know the benefit that's who should be making these decisions. NICE are looking at the finance side and not quality of life and can come across to me as following the slogan 'Why waste time, save us the trouble and euthanise yourself'. Who tells the T1 political leader of our country she's using something that apparently isn't any benefit? Wasting tax payers money and all that

I'd be gobsmacked if any (not so) 'NICE' people who made this decision are diabetics. How can one CCG say it's no benefit if another CCG are providing them (even if for specific situations like gestational diabetes or severe hypos). I basically enquired whether my CCG were providing them and what situations they would do so, as I would really like to have one but didn't want to waste time going for something that I didn't fit the profile for.

Didn't expect them not to be offering them at all. It's not a 'one rule for all' but surely it should be.

Why make the hoohar about the fact it's going to be available on prescription if it actually isn't a benefit and not for all the country just sections of it.

As you can gather I am really disappointed.

I actually use ,in my opinion, a very good BG monitor specific to type1 - GlucoRX HCT & Ketone (Connect version - This is a smartphone dongle so results go directly into a logbook in the phone) and it takes standard and ketone test strips. I get 200 test strips on a prescription and 10 ketone but don't have to test ketones much so probably won't require them very often.

I'd rather not have to be pricking my finger forever and a day...

I need to repeat the test strip prescription each month - like my insulin it's not so restricted, so you could estimate I'll use about 2400 test strips a year 48x50. That may seem a lot but it works out just over 6 tests a day - I'd prefer to be able to do it more often to be honest. Not sure they'd allow 2 prescriptions a month though.

If your blood sugars are off you probably have to test several times more than normal and you have to test if you need to drive and you get a 'sneezed and messed up the test strip' situation so have to do it again. If it were £35 a box of 50 it works out the equivalent of about 28 or more sensors - 4 more than necessary.

I know we will still require to test blood on occasion like before driving and the like but I can't see much cost difference. Surely if we are in more control of where our sugar levels are and can interact before hyper/hypo we avoid more costly complications further down the line. I could even afford the flash device myself, it's just the sensors that are out of the average persons league.

All I can say is that the name NICE is the perfect example or irony. Perhaps they should find an acronym for NASTY instead? I say National Association for Supporting you to Terminate Yourself. :O Yeah I am really disappointed.

*Calms down and gets down off the soap box*

 

[Northerner]

NICE are always a bit vague in their recommendations, unfortunately It allows the CCGs to interpret what they say in their own particular way, which is what leads to the disparity of provision It's the same situation with pumps, some CCGs won't fund them, some will. Until relatively recently here in Southampton if you were suitable for a pump and your consultant recommended one you had to go to Bournemouth because Soton weren't funding them.

As you say, the PM clearly feels they are a benefit!

 

[SB2015]

We had clinic yesterday, I'm not expecting anything regarding the Libre, but we were lucky and got the lead consultant yesterday (great woman who really knows her stuff and doesn't mince her words!). She said she's going to see someone very soon to argue the case for prescribing Libres. They won't get them for everybody, and the Libre hasn't been around long enough to prove its worth to a lot of people, but she's hoping to use certain patients as examples. My daughter's HbA1c is 55 (7.2). Has been the same the last twice and before that was steadily 51-53 for pretty much the last 4 years or so, apart from one ridiculously low one when she was going through a period of lots of nighttime hypos that we hadn't picked up on. (Probably pre-Libre.) I'd prefer her to be below 50, although am slowly coming to the conclusion that that probably isn't possible at the moment, and was gutted when it crept up 2 points in the summer and hasn't come down again! The consultant, however, is dead impressed, she said to keep it that rock steady when my daughter is now fully in the throes of puberty is pretty amazing! (Because puberty hormones stop insulin from working properly, which means usually everything goes completely crazy for a couple of years during this time, and for some reason it's worse in girls. Certainly my daughter's insulin requirements have shot up in the last few months, full pump now only lasts 4 days instead of 6 😱)
So I'm actually feeling quite pleased with myself this morning And this lady REALLY doesn't mince her words, if she's happy then it must be good, if she thought we weren't putting enough effort in then she'd definitely let us know! 😱

As the consultant bothered to tell me all this then presumably she wants to use my daughter as one of her examples, which means maybe we might have a chance of being offered the Libre on prescription. We'll wait with bated breath!

I was amazed what a difference to my HbA1c the Libre made. I had been in the 50s for ages, and couldn’t think of anyways of reducing it. Once I had the Libre I got down to the mid 40s, by looking at the patterns, heading off hypos (so avoiding over treating these) and hypers we’re headed off. Also the patterns showed what specific foods were diong and I was able to adjust carbs/ specific foods. I hope that your daughter is able to get one.