Petition for Freestyle Libre on NHS

[Jane!]

Hi, not sure if this is appropriate ( so apologies if not) but I've just signed this petition and thought I'd share http://you.38degrees.org.uk/petitions/freestyle-libre-on-the-nhs

 

[Flakey Bake]

Mahola, yes you are right everything is cash strapped these days. But from the Libra users I hear from indicate that has really helped their control. It would be good to get these on the NHS, even on a tempory loan basis. I would welcome the chance to use one of these for a month to understand what is going on, particularly during in the night and pesky dawn effects. I work full time and fatigue is a constant battle, I would die on my feet if I did routine 3am checks.

 

[Brunneria]

I would prefer the NHS spent its money on cancer treatments, resources and emergency care. And dietary advice - providing it was better advice than is provided now.

If more money is going to be spent on diabetes, i would prefer that it went on education.

 

[ewelina]

Hi, not sure if this is appropriate ( so apologies if not) but I've just signed this petition and thought I'd share http://you.38degrees.org.uk/petitions/freestyle-libre-on-the-nhs

Thank to libre I got my hba1c down to 5.8% It costs a lot but its absolutely worth it. When you think long term, it would probably save nhs lots of money on treating complications caused by poor control. Besides when you calculate the number of strips type1 uses per month and how much it costs, libre is not that much more expensive

 

[Flakey Bake]

I would prefer the NHS spent its money on cancer treatments, resources and emergency care. And dietary advice - providing it was better advice than is provided now.

If more money is going to be spent on diabetes, i would prefer that it went on education.

Brunneria, I see that you are type 2. The requirements blood monitoring for type 1 and 2 are different. And please before I get inundated with type 2s arguing for monitoring kits - yes I agree you should have access. My point is, those on insulin (type 1 mainly and some type 2) have very rapidly change BG and just knowing whether your BG is trending upwards or downwards could really help control things better. I have to eat as a precaution when I am in normal BG levels before I carry our aspects of my job (farm visits/working in biosecure units where personal belongings are not allowed etc). I have to top up my sugars just in case they are on their way down. This often leads to me running my sugars unnescessarily high.

 

[donnellysdogs]

Had a cgm and would not go back to it... I believe the same as Brunneria. More on education and I mean for all types.

 

[Brunneria]

Brunneria, I see that you are type 2. The requirements blood monitoring for type 1 and 2 are different. And please before I get inundated with type 2s arguing for monitoring kits - yes I agree you should have access. My point is, those on insulin (type 1 mainly and some type 2) have very rapidly change BG and just knowing whether your BG is trending upwards or downwards could really help control things better. I have to eat as a precaution when I am in normal BG levels before I carry our aspects of my job (farm visits/working in biosecure units where personal belongings are not allowed etc). I have to top up my sugars just in case they are on their way down. This often leads to me running my sugars unnescessarily high.

I use the libre myself - self funded - so i am extremely aware of all the pros, cons, and testing criteria.

Precisely because of this, i feel fully qualified to contribute to the discussion.

 

[Flakey Bake]

I am interested - have many people had bad or unproductive experiences with CGMs? I ask from the point of ingnorance and as someone who would like to try one. It seems relevant to the debate here and the differing views I am hearing.

 

[ewelina]

Are you not advised to still do finger prick tests as well, when using the Libre?

I still finger prick, but maybe once or twice a day (comparing to 10 tests without the libre). I could argue about pros and cons here but I think my hba1c result tells it all. Last year summer time 8.7%, now 5.8%

 

[Brunneria]

The libre is not approved to replace finger prick testing for insulin users (T1, 1.5, 2 or 3), particularly when driving.

Some of my sensors have not been accurate enough to base an insulin injection, i believe. Some sensors are out by significant percentages when calibrated against a prick testing meter. These differences are usually but not always consistent, in my experience.

But the discussion isn't about accuracy or reliability, or effectiveness. It is about whether a nearly bankrupt NHS should spend millions on a gadget when other, cheaper, accurate alternatives are already available.

 

[ewelina]

The libre is not approved to replace finger prick testing for insulin users (T1, 1.5, 2 or 3), particularly when driving.

Some of my sensors have not been accurate enough to base an insulin injection, i believe. Some sensors are out by significant percentages when calibrated against a prick testing meter. These differences are usually but not always consistent, in my experience.

But the discussion isn't about accuracy or reliability, or effectiveness. It is about whether a nearly bankrupt NHS should spend millions on a gadget when other, cheaper, accurate alternatives are already available.

You can call it a gadget but believe me, for many insulin users its a life saver ( im talking not only about libre but any cgm). Its not accurate all the time, but gives a great insight on whats happening with my sugar levels in any minute of my life. It allows me to react quickly and use strategies I would never dare to use without cgm such as sugar surfing or super bolusing

 

[Brunneria]

You can call it a gadget but believe me, for many insulin users its a life saver ( im talking not only about libre but any cgm). Its not accurate all the time, but gives a great insight on whats happening with my sugar levels in any minute of my life. It allows me to react quickly and use strategies I would never dare to use without cgm such as sugar surfing or super bolusing

They are all gadgets, and yes, they can be life saving. But that does not mean everyone needs one, or that the libre should be supplied on the NHS. Other gadgets/life savers already exist and are already available for people fulfilling certain criteria.

As i mentioned before, i think there are many diabetics (all types) who would receive greater benefit from increased quality education, assuming there was any money available to increase spending on diabetics.

As @mahola has said, the Libre is not an essential part of diabetes care.

 

[Flakey Bake]

You have made some really good points Brunneria and I do think accuracy etc are important considerations becuase of the cost:benefit calculations. NICE could rightly never support something that had failings. I firmly believe that a good real time glucose monitoring system is the way forward to help insulin users particularly and those who are striving to improve their health but maybe the technology needs to improve somewhat before public money is spent. Anyway I need to sleep. It has been good to be involved in some good natured debate. Goodnight everyone.

 

[pinewood]

So for those who think the Freestyle Libre should be free on the NHS; where will the funds for this come from?

Bear in mind, the NHS can't afford glucose monitors for type 2s and junior doctors are already working for less than minimum wage...

The idea is that the money would come from the cost savings: (1) on test strips; and (2) from the reduced need to treat diabetic complications achieved by improved hba1c results. Of course, research needs to be undertaken (and I believe a NICE study is underway) to prove this would indeed be the case.

I personally feel that Libre/CGM IS absolutely an essential part of diabetes care. My Hba1c would certainly be higher without it and my quality of life would be worse too.

Even if use of cgm/Libre isn't clinically proven to reduce complication risk there are, in my opinion, plenty of arguments for why improving the management of blood sugar levels for type one individuals should be given priority, given we did nothing to cause this and have to live with it every minute of every day. In my opinion the NHS could cut back on other areas to help fund it - but that's an entirely different discussion.....

 

[robert72]

We don't know how much the NHS would pay for Libre. They get test strips for about half the price that we would pay for them in the chemist. It could well be very comparable to the cost of test strips for a T1.

 

[robert72]

I know my daughter wouldn't want one. I've already asked her if she'd like one and she said she didn't like the idea of having the sensor stuck to her all the time. Same answer for a pump.

I wouldn't want a pump attached to me either, but Libre sensor is about the size of a £2 coin and I almost never notice it.

 

[robert72]

I might put us one each on our xmas lists this year to Santa

WARNING: They are addictive

 

[Brunneria]

I do love the Libre, and (like @ewelina ) i feel my bg control has improved significantly. If i could, i would give one to every diabetic, BUT...

i will stop repeating myself now

 

[catapillar]

I do agree that a petition askin for it as a right is a brave approach when you look at the amount of healthcare rationing going on.

But I strongly feel that a long term wider view of the costs benefits of providing CGM/GM is needed.

I think it's something like 90% of patients in renal failure are diabetics (i haven't looked that up & its drawn from my memory which could be unreliable) I don't know how expensive dialysis is, but probably more that a libre. And probably someone in renal failure can't work full time & make the associated tax/NI contributions.

When you look at it like that a GM that allows you to safely surf lower and avoid the risk of diabetic complication might be worth the cost. I believe NICE are currently looking into it.

Edited by a mod

 

[Flakey Bake]

I guess if we do not strive for improvement in our gadgets and education; research would stagnate and the situation for diabetes control would never improve. My belief is that a good cgm represents the next achievable step in diabetes care. Effort may be needed to reduce the cost, however it should not be a reason to abandom progress.