# Freestyle Libre - not available on prescription



## MCAB (Nov 3, 2017)

I use the Freestyle Libre system as it was recommended by my hospital Diabetes Specialist nurses. It is an outstanding advance in blood glucose testing and if I have to resort to using testing strips (while waiting for more sensors) I feel like I've gone from a 3D understanding of where my BG is going to a 2D understanding. 

With the announcement from Abbott, I was hoping the NHS would take on the 4-weekly cost of £96 - sensors are approx £48 each and VAT is not chargeable on this plus about £4 per delivery. 

I was called by my GP surgery yesterday to say my local Clinical Commissioning Group would not cover the cost and therefore the sensors would be available on the NHS. Looking into this a bit it seems the excuse being used by CCGs is that NICE has not yet recommended Freestyle Libre and secondly that the CCGs see this as a more expensive option. 

Is Diabetes UK bringing pressure to bear on: 
(1) CCGs - the authors of the *recommendation for my CCG clearly did not understand current BG testing in the real world. (all these documents can be located by Googling or by going to your CCG website)
(2)  to get NICE to accelerate their appraisal of the Freestyle Libre system. I don't use test strips now except as a emegency back-up when I'm out of sensors. 

Accu-chek Mobile test cassettes were around £56 for 100 tests which I no longer have on my repeats list. 

However, the Freestyle Libre can be used an unlimited number of times - I average around 25 tests per day but the sensor is continuously measuring the glucose in my interstitial fluid. So a cost comparison with blood testing strips is not valid. 

In case you are wondering, I have no connection with Abbott other than I am a customer. 

What is everyone else's experience of trying to get the Freestyle Libr sensors on prescription?


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## Northerner (Nov 3, 2017)

Hi MCAB, welcome to the forum  In fact, the Libre has been approved by NICE and can be made available on prescription as of November 1st:

https://www.diabetes.org.uk/get_inv...92.1004609027.1508408924-991543797.1497762172

Unfortunately, it's down to the CCGs to decide whether they will fund it in their area, so it's going to be a postcode lottery 

Many of us use the Libre here and your arguments are perfectly sound and logical - it's a case of persuading the bean counter


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## trophywench (Nov 3, 2017)

You still have to finger-prick before and whilst driving, otherwise you're breaking the law - so we can't entirely get rid of test strips.


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## Lucy Honeychurch (Nov 3, 2017)

It's a big no from my CCG.


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## grovesy (Nov 3, 2017)

From my reading around no CCG has agreed to allowing yet.


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## Paul Rogers (Nov 3, 2017)

trophywench said:


> You still have to finger-prick before and whilst driving, otherwise you're breaking the law - so we can't entirely get rid of test strips.


Is that true?  I thought the legal requirement was to check BG before driving and every 2 hours during driving.  I wasn't aware that the method was specified.


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## everydayupsanddowns (Nov 3, 2017)

Paul Rogers said:


> Is that true?  I thought the legal requirement was to check BG before driving and every 2 hours during driving.  I wasn't aware that the method was specified.



DVLA specify 'blood glucose', Libre and CGM systems do not read blood, they read interstitial fluid, so no continuous systems currently satisfy the legislation.

The requirement for the sample being 'blood' is currently being reviewed and may change, but the committees that decide these things are not the speediest, and I believe it may involve a change in law, so it is blood glucose (fingerstick tests) for now.


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## everydayupsanddowns (Nov 3, 2017)

grovesy said:


> From my reading around no CCG has agreed to allowing yet.



I've seen some encouraging position statements (from DUK and ACBD along with a technology briefing by NICE), and some people on the FB Libre group have managed to get prescriptions, but the coverage is very patchy and most CCGs I've seen so far have issued a blanket knee-jerk 'No' and merged Libre with their opinion of CGM.

It's early days yet though, and Libre being 'on tariff' is an important initial step to getting it more avaiable to more people that need it. I suspect it will be a while yet before availability is widespread though.


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## mikeyB (Nov 3, 2017)

I honestly don’t know what’s happening up here in Scotland. I’ll ask my diabetes specialist next time I go. It’s a different system, because there are no CCGs to soak up NHS money with their 6 figure salaries.


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## temporary_spike (Nov 3, 2017)

it is frustrating that you could get the Libre sensors on prescription but the CCGs are saying no, to clarify MCABs costing the NHS get the Libre sensor for £35 each which makes it considerably cheaper then CGMs - so why they've lumped them into the same bracket is beyond me - and if you follow the NICE guidelines as regards number of blood tests and the cost of strips the sensors aren't that much more expensive - granted most will still have to have 'some' tests strips as well, I think most people would happily buy their own strips instead of paying for the Libre. The savings in the long run could be immense for the NHS.............


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## everydayupsanddowns (Nov 3, 2017)

mikeyB said:


> I honestly don’t know what’s happening up here in Scotland. I’ll ask my diabetes specialist next time I go. It’s a different system, because there are no CCGs to soak up NHS money with their 6 figure salaries.



Libre is on the NHS tariff in Scotland and NI as well as England/Wales. All still ‘subject to local healthcare economy’ but I’ve no idea what that means in practical terms north of the border.


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## SB2015 (Nov 3, 2017)

I have seen a copy of the criteria set for our CCG and it looks as if there will be a possibility of getting sensors, but with very strict criteria.  I contacted my Consultant and I am waiting for  a letter from him to GP.  I will let you know what happens.


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## Ref (Nov 3, 2017)

According to my GP, the libre is not even on the radar of my local CCG


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## gangan (Nov 6, 2017)

Rang my diabetes team at Luton to be told  the local CCG wont fund the sensors.Being on benefits this is not good news.Did anyone  else notice in the papers a photo of the PM wearing a sensor ?


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## Northerner (Nov 6, 2017)

gangan said:


> Rang my diabetes team at Luton to be told  the local CCG wont fund the sensors.Being on benefits this is not good news.Did anyone notice a photo of the PM wearing a sensor in the papers?


I wonder if her CCG is prescribing it?  So short-sighted of CCGs to place blanket bans on prescribing it


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## gangan (Nov 6, 2017)

"Penny wise,pound foolish" springs to mind with the CCG's.


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## Steven Clarke-Emmerson (Dec 13, 2017)

MCAB said:


> I use the Freestyle Libre system as it was recommended by my hospital Diabetes Specialist nurses. It is an outstanding advance in blood glucose testing and if I have to resort to using testing strips (while waiting for more sensors) I feel like I've gone from a 3D understanding of where my BG is going to a 2D understanding.
> 
> With the announcement from Abbott, I was hoping the NHS would take on the 4-weekly cost of £96 - sensors are approx £48 each and VAT is not chargeable on this plus about £4 per delivery.
> 
> ...



Hi - I've been on numerous two weekly trials of the Libre and have to say it's absolutely brilliant, particularly now they've improved the "glue". Problem is I simply can't afford it but everyone states I have an urgent clinical need given absolutely no hypo awareness, problems with pump sites etc. resulting in very erratic control resulting in severe hypos. After 53 years of managing my diabetes pretty well, this is really scary - may be related to other medication I take, but not clear yet.

The limited times I've been on the Libre I've managed to identify problem times of night and day, given my fingers a bit of a rest and it's enabled me to test as often as I like and discreetly. Problem is my sight is limited and have to travel my public transport - try pricking your finger standing up on an overcrowded bus! With the Libre it was possible and gave me quite a lot of reassurance and warnings of highes/lows.

Now the bizarre aspect - health so bad that the CCG agreed to fund a CGM system - huge cost. Unfortunately because of unexpected massive demand from Germany and Australia Medronic are not selling to new "customers" until they've constructed extra manufacturing capacity some time after Spring 2018 (that probably translates to summer at the earliest). No problem I thought, the exceptional funding could be used to purchase the Libre sensors as a stop gap and hardly impact on the CGM funding. Unfortuanately not possible because of "funding mechanisms", and I'm ashamed to say, I simply can't afford to purchase myself. Diabetes research nurse has been brilliant and done her very best to beg/borrow additional sensors, but Abbotts are having none of it (and to be fair, I can understand it would set a precedent). So left with old style finger pricking and really expensive and almost inevitable ambulance call-outs and hospitalisation.......


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## Northerner (Dec 13, 2017)

Steven Clarke-Emmerson said:


> Hi - I've been on numerous two weekly trials of the Libre and have to say it's absolutely brilliant, particularly now they've improved the "glue". Problem is I simply can't afford it but everyone states I have an urgent clinical need given absolutely no hypo awareness, problems with pump sites etc. resulting in very erratic control resulting in severe hypos. After 53 years of managing my diabetes pretty well, this is really scary - may be related to other medication I take, but not clear yet.
> 
> The limited times I've been on the Libre I've managed to identify problem times of night and day, given my fingers a bit of a rest and it's enabled me to test as often as I like and discreetly. Problem is my sight is limited and have to travel my public transport - try pricking your finger standing up on an overcrowded bus! With the Libre it was possible and gave me quite a lot of reassurance and warnings of highes/lows.
> 
> Now the bizarre aspect - health so bad that the CCG agreed to fund a CGM system - huge cost. Unfortunately because of unexpected massive demand from Germany and Australia Medronic are not selling to new "customers" until they've constructed extra manufacturing capacity some time after Spring 2018 (that probably translates to summer at the earliest). No problem I thought, the exceptional funding could be used to purchase the Libre sensors as a stop gap and hardly impact on the CGM funding. Unfortuanately not possible because of "funding mechanisms", and I'm ashamed to say, I simply can't afford to purchase myself. Diabetes research nurse has been brilliant and done her very best to beg/borrow additional sensors, but Abbotts are having none of it (and to be fair, I can understand it would set a precedent). So left with old style finger pricking and really expensive and almost inevitable ambulance call-outs and hospitalisation.......


What awful bureaucracy Steve  Really sorry to hear the pen-pushers can't actually concentrate on the needs of the patient


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## MCAB (Dec 14, 2017)

Dear Steven, thank you for this information. You very effectively described why the Freestyle Libre system can improve control for some people with diabetes. Don't apologise for not being able to afford it - you should not be having too as this is something the NHS should fund from the taxes we all pay. I would rather not be paying £1200 a year on my own essential healthcare, but have to sacrifice spending on other things as I feel this system improves safety with respect to hypos. This is particularly the case when I'm hiking in the hills (the other day it was so cold, there was no way I could have pricked my finger if I had wanted too!) or driving (yes- the DVLA have not yet caught up and yes I know there is a legal requirement to reference blood (rather than interstitial fluid glucose levels. However, if Freestyle system is showing a steady 6 mmol/L or above I know I'm good to go. Less than that or with a trend arrow showing dropping below 6 mmol/L I use my back-up Aviva meter and have a snack first.),  I'm still waiting (but not holding my breath!) for the GP at my surgery who is reviewing my case to make a decision. If the GP says yes, he will have to fight it out with the CCG. QUESTION TO DIABETES UK: (1) how is Diabetes UK fighting our corner with CCGs to bring pressure to bear for them to bow to the inevitable? (2) Can we have an in-depth article in "Balance" on the Freestyle Libre system (all aspects)? And before, someone points out that charities are supposed to apolitical - well, the reality is that this IS about politics. It is about how politicians prioritise spending and/or are honest with voters (surely a first?) about the fact that we'll all have to pay more tax to cover the cost of the NHS. The UK spend per head on the NHS is below that for other Western EU countries.


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## mikeyB (Dec 14, 2017)

But spending is higher on illegal nuclear weapons and delivery systems than other Western EU countries. There is money around, the government choose not to spend it on health. There’s no need to increase tax. Each of the planes that will fill the decks of the new aircraft carrier will cost around $80miliion each. We’ve got 138 on order. That’s a very expensive way to kill people. 

You’d think they could spare a few billion to help the NHS make people better.


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## Diabetes UK (Dec 14, 2017)

Hi @MCAB

Thanks for your questions.

*(1) how is Diabetes UK fighting our corner with CCGs to bring pressure to bear for them to bow to the inevitable?*
We want to ensure that everyone who could benefit from using Flash GM has access to the technology, which for many can be incredibly beneficial – as we have heard from @Steven Clarke-Emmerson  . We saw the first steps toward this in November 2017 with it’s addition to the NHS tariff. But there is now much more work to do. Putting pressure on local decision makers is at the forefront of this. In each nation and locally, we are working with Clinical Commissioning Groups (CCGs), Health Boards, Trusts and Local Health Boards (LHBs) to persuade them to put policies in place so people can access Flash GM. This is coming from our regional teams, volunteer networks and our call to you to raise this issue in your local area and make some noise about Flash GM: Join the Fight

Flash GM is also new technology and therefore many people are not aware of its benefits. So, we’re also raising awareness amongst health professionals and people with diabetes about this new technology. In anticipation of the change in November, we joined other diabetes organizations and health professionals to create consensus guidelines about the technology. The guidelines recommend which patient groups would benefit, how healthcare professionals can help patients get the most from the technology and considerations for health service funders and providers.
https://www.diabetes.org.uk/resources-s3/2017-09/1190_Flash%20glucose%20monitoring%20guideline_SB_V9%5B4%5D.pdf

Going forward, we will be monitoring access, encouraging areas to develop policies and will need your help to make sure that we make as much noise as possible where this doesn’t happen. So if you would like to help raise the issue - https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring


*(2) Can we have an in-depth article in "Balance" on the Freestyle Libre system (all aspects)?*
We've covered the FreeStyle Libre in various levels of depth over the past year to 18 months, as news items and when doing features on diabetes technology in general, for example.
Most recently, we’ve covered the progress of Flash GM, in particular the success of it now being able to be prescribed on the NHS, while also highlighting that more needs to be done to avoid a postcode lottery.
We will be planning the content of the next issue in the new year, would there be anything that you would like to know more about which I could forward to our _Balance_ team for suggestions?


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## Mark T (Dec 16, 2017)

As an aside; when we were having a general chat about testing practises, my DN said that the practice was looking at allowing the use of Libre.  Although I wouldn't be allowed as I'm T2.


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## Philip Eckersley (Jan 3, 2018)

Lots of useful reflections here. Thanks. I am struggling to even get to talk to someone in secondary care. My GP was absolutely clueless even about the commissioning process which I found worrying.

I have used Libre on trial and found it revolutionised how I monitor and control my BG levels. I haven't read all the comments here, but it would be good to know of a local Commissioning Group which has approved this on prescription. Perhaps then Diabetes UK can use this as an example to show other CCGs that it's not that scary (if indeed it isn't). The hole in all this is the DVLA's insistence on a BG test rather than interstitial blood. Perhaps one day they will catch up with the rest of the world. The effect of this is that GP practices would be in effect prescribing twice for the same outcome because they would have to issue test strips *and *a Libre patch although presumably the test strips would have to be issued less frequently. Again, and I am sure D-UK are aware of this, this is an area on which to focus campaigning effort.

Just two minor gripes, the patches can make my skin feel a little itchy even after being removed. Also I have shifted to the strips for the meter and they all come individually wrapped which is frickin' annoying. Why can't they be in a little tub like the OneTouch Veria meter which was my meter of choice.

I guess in the short term I am just going to have to hunker down and accept that my budget will have to stretch to an extra £100/ month at least in the short term. I can't really afford it but if I cut back a little it seems like a small price to pay for (finally) good BG control. There will be many who won't be able to.


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## trophywench (Jan 3, 2018)

Well I'd still have to test my blood with the meter/handset that talks to my insulin pump anyway even if the Libre worked for me - otherwise it couldn't calculate corrections or boluses!


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## Lucy Honeychurch (Jan 3, 2018)

My GP was too. Completely useless, but then he admits to not knowing much about type 1  he said I need to get the hospital to prescribe The Libre, so I asked my DSN and she said lots of caveats were in place by the CCG, such as proving someone else had to monitor your bgs (eg: learning disability, physical disability, or severe hypo unawareness to the extent you're 'not with it for x amount of hours a day') so no further along then! When I have my next review I'm going to ask my Consultant. I'm also trying to get a pump, I'll report back.


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