Petition for Freestyle Libre on NHS

[Cofty]

I'm hoping she will change her mind, but I'm not prepared to keep pushing her. She's been type 1 for just shy of 18 months. She's had a lot to come to terms with in such a short space of time. I'll continue letting her make the decisions. It's her diabetes, not mine

Yes that's more than fair enough.

 

[tim2000s]

Yes I agree with education in that sense. However, DSNs & consultants are given the space to only offer pumps to T1s that can 'manage' pumps (as well as fitting NICE clinical criteria) - why not entrust them with similar responsibility on CGM-type technologies?

As with most things T1 related, sadly, the ability to manage with treatments and measurement mechanisms is important in using them, and there is a significant proportion of those with T1 that really struggle with that (when talking to various HCPs, it amounts to around 30% of the T1 population), so education is absolutely critical in a)dealing with T1D and b) being able to use any tools that help you deal with it. We sometimes forget how many people truly struggle with the condition.

So while entrusting DSNs to determine who should have CGM-type technology is an approach, they and consultants spend most of their time dealing with people that don't understand how to self-manage the condition, and who will not change an insulin dose without the HCPs say so. Given the current financial position of the NHS, until a greater percentage of the population is educated to be able to use these technologies better, they are not going to get a NICE recommendation easily. This is why there is significant work undertaken by companies to get demonstrable clinical benefits from these products and demonstrate a positive cost/benefit, in order to justify listing by various reimbursement mechanisms.

 

[M80]

Signed!! Thankyou for sharing. Agree it maybe is too much, but at least part fund it.Now I pay almost all my testing myself, the strips used before are saving NHS lots.But that is not balanced.At least fund the equivalent of what strips would have cost me.Feel punished for caring about the diabetes financially.And it is so small, I have tried omnipod pump,normal pump, it does not compare.The sensor feels like a life saver.And at work it is amazing to not have blood present etc.

 

[keitjones]

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

Signed

 

[KenBachelor]

I've only just found this, but I signed the petition immediately.

 

[Scott-C]

The Scottish Parliament has a petitions committee which is currently looking at one about cgm. I don't pay much attention to politics as most of them are a bunch of ferrets but I note in passing that the Scottish Government's response of 4 July in the link below says:

"In addition, there is now a strong evidence base for the clinical benefits of CGM. Access to CGM is significantly lower in Scotland than is indicated by clinical guidance and consequently this new funding aims to support NHS Boards in developing services for CGM
provision towards embedding this technology into clinical practice."

That looks mildly encouraging - strong evidence base for the clinical benefits of CGM ..... embedding this technology into clinical practice - as if we users didn't know this already, but good to see a Govt. catching up on the obvious.

But, it's then hedged/caveated on page 3:

"The Type 1 Diabetes subgroup of the SDG has reviewed the national approach to CGM to ensure that the groups with the greatest clinical need (the <5s and those with severe hypoglycaemia) remain the most critical."

Which is fair enough, when funding is scarce.

But then we have the reality of it on page 4: funded CGM for 2017/18 is 111 people! Not sure if that's in total or in addition, but with a Scottish T1 population of, can't remember, 25 to 30 thousand rings a bell, so it's a drop in the ocean.

I think cgm will be funded at some point, but I'm not placing any bets on when.

Colour changing strips were regarded as expensive high tech when they first came in, then meters replaced them and there was probably the same fuss about the expense and whether they were needed when colour changing strips were just fine, and so it goes with cgm now - same discussions about price but it will inevitably be seen as the logical next and obvious step in the history of monitoring and everyone will be wondering in 10 years time why it was an issue at all.

There's been another post about how France is providing libre but the flip side is you only get 100 strips a year and would have to buy the rest. I could live with an accomodation like that.



http://www.parliament.scot/GettingInvolved/Petitions/diabetes

 

[Scott-C]

Never, but never take insulin based on what this thing says. Never.

I view it as a personal judgment call which needs to be made by each user.

Never is the right answer for you, and I respect your choice.

I've been quite happily bolusing from it for months now and don't think I'm in any sort of jeopardy from doing so.

Looking back over my meter for the last few weeks, I've generally been doing a couple of calibration checks each day to get a sense of how close to reality it is, and there's the occasional day when there's 6 or so tests if something odd is happening and I want additional corroboration.

There's the occasional rogue sensor where I'll check more, but by and large I'm ok with a couple of calibrations.

It maybe depends on what you expect out of it. I'm happy if I'm generally between 4.5 and 7, not that bothered much where I am in that range and, despite it's quirks, libre generally tells me if I'm there or thereabouts because the 2 calibrations a day allows me to take a view on whether it's loosely speaking, telling the truth or not.

I think some people make the mistake of looking at the numbers as literal truth. After using it for a while, I realised that what it is telling me needs to be interpreted in association with whatever else has been happening in my surrounding T1 world.

All I know for certain is that I've been bolusing from it for months now and haven't had any serious hypos or hypers.
I can't say the same for strips alone.

 

[M80]

What is very good, is that when you are really really tired of the whole process, almost 30 years of measuring bs, and slowly the measuring becomes less and less frequent, with the libre, it is not hard at all. Especially if in a birthdayparty for kids, on the bus, the beach,I do it. Even if it is not 100percnt accurate, it guides me enough to get a informed picture,And, it tells me what was going on through the night. I left scandinavia and lost so many rights. The omnipod pump fex.If I had stayed, this libre would have been funded.However, there is a much higher tax, so fair enough, I would in a way have payed it through more tax on wages. But it is not fair, that not any of it is funded.At least let us have whatever the strips would cost as a help towards funding it. Now NHS save lots on all the strips I do not use and used to get funded. There is a risk people waste and do not apreciate what the libre is, I totally support it is not something that can be just handed out.But there must be ways around this.A trial period or something.

 

[Shazzle80]

The NHS are strapped for cash as it is. I think we should be grateful for what we get for free already.

A Libre is not an essential part of diabetes care.

I understand what you mean, but I also feel that it's highly beneficial for all diabetics especially to chart patterns and gain better control and understanding and patterns relating to our T1. I buy my own and at £100 a month it's expensive. I do not need a prescription of testing strips (which for someone who used 8-10 a day is massive saving) nor do I need a prescription for lancets, which would equate to one sensor at least if not two. I now test my sugars up to 20 times a day as it's so simple. My Hba1c has come down by 1.5. I see that a short term spend will equal a long term saving for the NHS. I feel really strongly about this as do my hospital diabetes team

 

[Shazzle80]

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.

Hi there. I have one and I can't imagine going back to strips. It's convenient, easy, spots trends and rather than just giving you a blood sugar it also shows an arrow indicating whether ur sugars are rising, falling or stable. It's ingenious!!!! Try! Try! Try!

It's a shame about the cost. My diabetes team gave me one for free with a sensor too. Might be worth a call to see if you could too xx

 

[TheBigNewt]

I can see how some people would find a CGM beneficial. Where I see it being most useful is for a kid, especially a little kid where the parent is basically managing the disease. Here the only one worth a hoot would be the Dexcom, because it will alert the parent via cell phone if the kid's getting low. As for adults a lot of us just don't want to mess with it, it could become a distraction like a pump. I guess I just "grew up" in the diabetes era using a meter (they were brand new in 1984 and I got one) so the CGM just isn't something I think will help me a whole lot at this point.

 

[Diabeticliberty]

Best we all be careful what we wish for. I have had Libre results which are all too frequently a million miles away from real life. I am mortified at the prospect of the system becoming widely adopted by the NHS and then regular far more accurate finger price testing equipment becoming less available. A lot of us then go to proverbial hell in a handcart attempting diabetic management on some of the highly flakey results that the Libre frequently offers. I have used one without a break in use for 2 years now and would dearly love for the things to read accurately. The thing is though that now matter how you attempt to dress it up the things do not. My last HbA1c was 46. My predicted A1c on my Libre was 35. Why do I stick with it? The relief that my fingertips get really do make buying them worthwhile. Sign a petition though? I really don't think so.

 

[TheBigNewt]

So if y'all have to pay for the thing out of pocket why don't you get the good one, the Dexcom? Works with a cell phone, no separate thingy to read the results, alarms you at night if you're going down the tubes, supposedly more accurate. I don't get ithow many people use the Libre there. Originally I thought because it was the only one NHS would supply but that's not the case as I understand it. Why drive a beater when you can drive a Mini Cooper (like me)?

 

[tim2000s]

I understand what you mean, but I also feel that it's highly beneficial for all diabetics especially to chart patterns and gain better control and understanding and patterns relating to our T1. I buy my own and at £100 a month it's expensive. I do not need a prescription of testing strips (which for someone who used 8-10 a day is massive saving) nor do I need a prescription for lancets, which would equate to one sensor at least if not two. I now test my sugars up to 20 times a day as it's so simple. My Hba1c has come down by 1.5. I see that a short term spend will equal a long term saving for the NHS. I feel really strongly about this as do my hospital diabetes team

I've posted this regularly on topics discussing the Libre, and I'm going to do it here again too. Whilst the Libre and CGM are amazing tools, and help people to improve their management, the people who pop up and say "I test 8-10 times a day so it will save the NHS tons of money in strips" are rather missing the point. You are the absolute minority. Most people with Type 1 test less than once a day (if you dig around the forum and my blog I've linked to the studies on multiple occasions, but it amounts to about 50% of all T1s, which is a shocking statistic) and in addition, the cost of CGM/Libre is considerably more than Glucomen LX test strips over a year - roughly twice the cost in fact - (check this post http://www.diabetes.co.uk/forum/thr...gn-the-petition-now.96988/page-2#post-1093151).

Then let's look at the other factor. People. Most users don't know how to interpret CGM or Libre data and will need a lot of help from already stretched clinic staff. Many of whom also need educating. And then there's the 30% of the T1s who the NHS themselves have identified as really struggling. So before we give tech to everyone, let's get all the T1s educated properly with regular, systematic refreshers, and then, once they have a handle on how to manage Diabetes, give them expensive tech, at least until the price comes down.

And don't forget that amongst all the data that has been published on Libre and CGM, there are two very different views. Amongst those who do receive CGM on the NHS for free, there is a much higher rate of failure to use and alarm fatigue than amongst those who purchase it themselves. In addition, in a fairly large survey of CGM and Libre users here, the Libre turned out to reduce the severity and frequency of hypos the least out of all the CGM systems listed (and bear in mind this is mostly people self-funding the systems), so it's not a good argument for that technology specifically.

So while these technologies are a great tool, they need to be looked at more widely, and it's the education of users that will be the critical factor in achieving long term benefits. Just taking a look back at UK T1 data, the number of people with an Hba1C value lower than 7.5% (68 mmol/mol) in the UK hasn't changed much between 2003 & 2016 (using NDA data), and yet there is more education and more technology available to help with this.

As an anecdotal aside, I've participated in focus groups of T1s from across the spectrum of the population, and normally I'm the only one with CGM, and out of the a groups of typically 12-15, only one or two others are interested in it. Unfortunately it's not the panacea we like to think it is.

While tools help, education helps more and costs less, and once the majority are educated, then the tools really start to make a difference. So for me it's education first, tools second.

 

[22nw22]

The NHS doesn't have enough money. Besides, what it does is NOT APPROVED and I doubt it's gonna be on there, probably NEVER

 

[22nw22]

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

We all know Libre is never going to be on the NHS! NEVER!!!

 

[tim2000s]

We all know Libre is never going to be on the NHS! NEVER!!!

That's not what the noises coming from the top people in Diabetes care in the NHS suggest.

 

[Snapsy]

@tim2000s I'm wondering about the potential for the Libre's availability on the NHS in future once it's approved - I'm presuming that funding would be on a sort of 'named patient' account basis via the CCG, a bit like pump and pump supplies funding, maybe?

At the very least I would expect there to be some hoops to jump through when it comes to actually being able to get them on prescription - what are your thoughts as to what the process* might be?

*unreasonably expects Tim to pluck answers out of the air*

 

[eventhorizon]

Someday I'm sure when CMG or Libre flash like systems become cheaper and more main stream they will be available to people who benefit from them. I reckon people who don't want to manage their diabetes with the tools available now won't do so with any new tools in the future. Somewhat self regulating, maybe.

Sent from my Redmi Note 3 using Diabetes.co.uk Forum mobile app

 

[pinewood]

So if y'all have to pay for the thing out of pocket why don't you get the good one, the Dexcom? Works with a cell phone, no separate thingy to read the results, alarms you at night if you're going down the tubes, supposedly more accurate. I don't get ithow many people use the Libre there. Originally I thought because it was the only one NHS would supply but that's not the case as I understand it. Why drive a beater when you can drive a Mini Cooper (like me)?

Libre is still cheaper than Dexcom. It is also smaller and less invasive. I use Dexcom G5 because I am allergic to the Libre adhesive and didn't like having to have a separate reader rather than using my iPhone, but nevertheless I prefer the actual size and style of the Libre sensor. I wish Dexcom was smaller and more user-friendly.