Freestyle libre petition please sign and share

[mossys]

https://petition.parliament.uk/petitions/204550

At 10,000 signatures, government will respond to this petition


At 100,000 signatures, this petition will be considered for debate in Parliament


As of 1-11-17 this is available on the NHS, however, it seems to be a postcode lottery. The system enables the wearer to maintain better control of their diabetes by monitoring glucose for up-to 8hrs with each scan, which will long term cost the NHS less money as there won’t be as many complications. There is no break from this disease. Many parents have to test children during the night, with this system they can test by just touching the sensor with the scanner.
Please sign and share the petition to make this free.

 

[himtoo]

signed !!

hope we get somewhere with this !!!!

 

[Edge]

Heading towards 4000 signatures. Would be good for people to share Mosseys link and copy on social (e.g FaceBook)

 

[Sweetheart66]

Signed and shared!

 

[DavidGrahamJones]

. . . . which will long term cost the NHS less money as there won’t be as many complications.

Surely that statement applies to type II as much as type I. Is there another petition for ALL diabetics.

There are 3.5 million people with diabetes in the UK, there is an estimated 1.1 million undiagnosed. 10% of that number are type 1, so 350,000. Multiplying that by £70 (monthly cost of sensors to NHS) then by 12 for annual cost, if my sums are correct, that's just short of £300 million on top of the 10% of the NHS budget us diabetics are reminded of every time there's something in the papers.

I'm very disappointed that the petition is only for type I diabetics. Not all type IIs have an easy time controlling their BG and don't forget, the purse strings are controlled by accountants who don't seem to have potential savings in their vocabulary. Apologies to any accountant that I may have just done a disservice to.

There doesn't seem to be any empirical evidence about potential savings, although I know personally the benefits, as do most diabetics. Anecdotal evidence doesn't count in this world, so until someone can actually show there are savings, that particular reason isn't going to count for much.

Don't forget the PM has been photographed on more than one occasion wearing her FS Libre sensor.

Another thought going through my mind is "How does the government 'force' a CCG to fund anything?"

Good Luck!

 

[karen8967]

Signed x

 

[kev-w]

Signed & shared.

 

[ickihun]

I will spread the word @mossys .
If it helps one person I'd be happy!

 

[tim2000s]

Okay guys - that is an awful petition. Technically, the Libre is now available free on the NHS - the government can point at the NHS BSA Drug Tariff and say "Look, there it is."

The issue is that local CCGs (that the Government has no control or influence over) are refusing to pay for it as there is not enough "real evidence" as in, "the type of evidence that proves beyond refute that Libre benefits people at an appropriate cost".

Your best bet is NOT to sign a faceless petition on a website. It is to speak to your local MP and get them involved locally.

 

[karen8967]

Okay guys - that is an awful petition. Technically, the Libre is now available free on the NHS - the government can point at the NHS BSA Drug Tariff and say "Look, there it is."

The issue is that local CCGs (that the Government has no control or influence over) are refusing to pay for it as there is not enough "real evidence" as in, "the type of evidence that proves beyond refute that Libre benefits people at an appropriate cost".

Your best bet is NOT to sign a faceless petition on a website. It is to speak to your local MP and get them involved locally.

i had a phone call off my gp practise yesterday to say i could have the sensor theres me buzzing half an hour later another phone call to say they had made a mistake and couldnt prescribe it as pan mersey havent approved it {think thats what they called it as i was too busy giving them a piece of my mind :***:}any way had consultant meeting this morning ranting on to her and she said she couldnt prescribe it either its an absolute joke as i pointed out the amount of strips i use would defo out weigh the cost of sensor i go through 150 strips every 2 weeks or so but all to no avail she did say she will try and get me a spare one but i wont hold my breath and at 50 quid a pop its just not viable for me to self fund rant over

 

[DavidGrahamJones]

Okay guys - that is an awful petition. Technically, the Libre is now available free on the NHS - the government can point at the NHS BSA Drug Tariff and say "Look, there it is."

I also think that the suggestion that it will save the NHS money long term must apply to type IIs as much as type Is. The figures available on the diabetes.co.uk website support that. In some ways the just having a petition for type Is could be somewhat divisive. I'm hoping that those who will really benefit will get approval from their CCG. If you are able to check out the Libre Facebook pages there are already several anecdotal messages of success in different areas..

 

[Bluetit1802]

I also think that the suggestion that it will save the NHS money long term must apply to type IIs as much as type Is. The figures available on the diabetes.co.uk website support that. In some ways the just having a petition for type Is could be somewhat divisive. I'm hoping that those who will really benefit will get approval from their CCG. If you are able to check out the Libre Facebook pages there are already several anecdotal messages of success in different areas..

I would rather see meters and test strips prescribed to T2s. OK the Libre is wonderful albeit expensive, but test strips would be a massive step forward.

 

[novorapidboi26]

Ultimately it is still very early days in the whole process.....

you cant honestly expect it to be all up and running this quickly.....

and although a lot of type 1 and 2 will swear by the Libre's success in improving control, there are strips out there that at the moment are cheaper and, by the data collected so far, more accurate......

I expect it to be a different story the middle of next year...

 

[Scott-C]

If you are able to check out the Libre Facebook pages there are already several anecdotal messages of success in different areas..

Interestingly, according to the link below, Grampian seems to be actively inviting anecdotal evidence.

https://m.facebook.com/GrampianType1s/posts/947236278773779

 

[tim2000s]

and although a lot of type 1 and 2 will swear by the Libre's success in improving control, there are strips out there that at the moment are cheaper and, by the data collected so far, more accurate......

That's not the issue with funding. Accuracy isn't something that's even been raised. The issue is that in the general T1 population, there is no high quality evidence that the Libre improves clinical outcomes.

"What????" I hear you say....

The studies that Abbott have put forward are all based on people that are clinically described as "Well controlled" and have either been self selecting as a result of being able to afford Libre or specifically picked, as in an RCT.

If a CCG approves funding, it has to be for a wider range of users, and if that range hasn't had proven benefits, then they are reluctant to fund.

Sad but true.

 

[EllsKBells]

I agree with @tim2000s

I also think it is worth mentioning that the Libre alone is not going to improve control - you have to be able to use the data you are getting off of it, so realistically, education needs to be better funded and provided, and it is not a replacement for finger pricks - it just isn't accurate enough, and that isn't really the point. Yes, I have used it in the past, and I don't any more. The sensors can be very hit and miss, and although they last 14 days, the last 2 or 3 are little more than useless, because by that point it has drifted so far off. I would not bolus off of it, no way, I wouldn't drive on the basis of a libre scan, and I wouldn't treat a hypo off of it.

Also, just to add to the point about the studies Abbot are quoting, they aren't exactly on large groups - I know we are talking about a small population anyway, but whether the sample sizes they have used can be considered statistically powerful is debatable.

Personally, I would rather see better access to education, so that people actually know how to respond to the numbers they are getting both T1 and T2, funding for meters and strips, for T2s who want them but also to stop this push towards really cheap meters and strips - I'm allowed the Aviva Accu-Chek Expert in my current CCG, but next year, if I move, there is a very good chance that I won't be.

 

[ickihun]

I think all brittle diabetes sufferers should have access to the libre freestyle.
I'm not sure either with regards to savings as finger pricking meters are also needed but just not as much. Hence why some type2s are refused a meter and now some type1s have both.
Fair.
Some would say not.
However out of experience type1s are so easily disrupted in having steady bgs. Insulin loss but replaced by injections is much better than no insulin but injecting at the same time as their pancreas would release isn't always possible nor accurate. This monitoring is to give a person a window into trying to replace that foresight.
Many many type2s dont need a libre but do need a regular monitor test strips funded.

My advice is for type2s to do their own petitioning for test strips now some type1s won't need so many!

 

[novorapidboi26]

Accuracy isn't something that's even been raised.

That was just my own thoughts seeping through......

 

[Omnipod]

signed

 

[DavidGrahamJones]

Grampian seems to be actively inviting anecdotal evidence.

That's good to hear.