FreeStyle Libre

[LizzieNI]

Hi
I'm in Northern Ireland and like a lot of the other UK people Libre isn't being funded by my trust, despite the big announcement of it being available on prescription. It's complicated by the fact the northern Ireland assembly isn't sitting, so nothing has been signed off yet. At my appointment yesterday I was told that even when it is available it will under strict conditions being met and only ever short term. No one will be getting it long term without a significantly serious reason.

 

[surferchappie]

I am T1 (24 years) and up until self funding FL 2 years ago enjoyed hba1c's of between 13 and 10. Not looking good for the long term.
I now have an HbA1c of 5.4....5.4!!!!!
I recently got denied the FL on prescription (local CCG is York) so I figured I would test their mettle; I have requested an equal number of test strips to meet half of what I tested on the FL.
I tested an average of 40 times/day on FL so have requested 600 strips per month, as you can expect this too has been denied and I have been allocated 300 strips per month.
The doctors have suggested I am a danger to myself and must suffer unexpected hypos and hypers if I need to test so often, I have tried to explain that that is not the case and that maintaining a constant is the goal, not evading hypos and hypers. Maintaining the constant necessitates very frequent testing, and furthermore, 13 to 5.4, well the proof is right there; what do leg amputations cost the NHS? Surely the savings are made right there, no? What about after care following loss of sight, nerve damage, kidney failure and so on...

Refusal to fund something (at a lesser like for like cost gdamnit) that in turn serves to promote healthier life allowing for negative drain on NHS further down the line and also allows for continued personal and financial contribution back into society & economy is a no-brainer - if this fails to sweep test strips off the shelves as a replacement diabetes management tool, my money is on someone higher up having their own money invested in test strip manufacturers.

 

[LizzieNI]

Hi
I'm in Northern Ireland and like a lot of the other UK people Libre isn't being funded by my trust, despite the big announcement of it being available on prescription. It's complicated by the fact the northern Ireland assembly isn't sitting, so nothing has been signed off yet. At my appointment yesterday I was told that even when it is available it will under strict conditions being met and only ever short term. No one will be getting it long term without a significantly serious reason.

Oh and another reason she gave me was that the Libre wouldn't talk to my pump.

 

[Ica291]

Hi,

I live in Devon, UK. I have been self funding a libre for nearly a year after being given a free trial.

It has dramatically changed life. I can't not wear one now as not only do I see my current level, but also what it's been doing and what it's likely to do. I tried to not wear one to save some money, but I got so anxious that I only lasted a day...... Yes I could finger prick, but that is more time consuming and painful, also not practical in the middle of a dog walk, supermarket, or work......

They cost around £50 each as others have said. I also buy the skin tacs so they don't fall off and cover with opsite flexifix.

My hba1c was 70 for years before using the libre. It is currently 47. The results really do speak for themselves.

My diabetic nurse has assured me that I meet all the criteria for getting the funding to have libre on prescription and has told me not to worry, although I have yet to have it on my green slip. So currently, I am still buying them. Watch this space.

 

[novorapidboi26]

I have been allocated 300 strips per month.

WOW, 300 a month, how many times a day does that work out for you?

And why so much......?

 

[Emma44]

Hello everyone!

I don't have diabetes, but as you can see by my name I am a nursing student and I study in the Netherlands.
Currently, I am in my exam year and I have to do a research project about new innovations in the healthcare.
Since this forum is global I wanted to reach out to a broad group of diabetics to make a world map and mark all the countries it's used in.
My question is:

Do you use the FreeStyle Libre and which country are you from? Also, is your FreeStyle Libre reimbursed or do you pay everything yourself + what do you pay?

In The Netherlands, it's not reimbursed yet because of researches that are still going on. Users have to pay everything theirselves and the sensor costs €60 which you have to get twice a month and €20,- for 50 skintacs which are some sort of adhesives for the sensor to stick on the skin better.

I would really appreciate your help and thank you all so much in advance!

loves!

Hello!

My daughter is 9 and we are self funding. She has got a medtronic pump. We have been told that she won't get it funded because she is too well controlled. But apparently those who are not well controlled won't be getting it either (according to the consultant) .... so am not entirely sure who will be getting it (we are in Cambridgeshire)! They won't fund CGM for her either. She loves not having to prick her finger and I find it's good for seeing what's happening overnight - I hadn't realised she was having a dip or that she was then going higher (despite sometimes getting up to test in the night to check her basals were good). We still finger prick for main meals but use it in between to give her fingers a rest. My daughter is quite active, so it doesn't last for the 2 weeks on her - it fell off last week after the second time she went swimming within the 2 weeks.

 

[stevieboy269]

Hello everyone!

I don't have diabetes, but as you can see by my name I am a nursing student and I study in the Netherlands.
Currently, I am in my exam year and I have to do a research project about new innovations in the healthcare.
Since this forum is global I wanted to reach out to a broad group of diabetics to make a world map and mark all the countries it's used in.
My question is:

Do you use the FreeStyle Libre and which country are you from? Also, is your FreeStyle Libre reimbursed or do you pay everything yourself + what do you pay?

In The Netherlands, it's not reimbursed yet because of researches that are still going on. Users have to pay everything theirselves and the sensor costs €60 which you have to get twice a month and €20,- for 50 skintacs which are some sort of adhesives for the sensor to stick on the skin better.

I would really appreciate your help and thank you all so much in advance!

loves!

I have been self funding the FL for nearly a year now by making sacrifices on other buying and like many have found it to be one of the best technological breakthroughs for diabetics in years (I have been T1 for over 40 years). The improvements in my health and quality of life have been enormous.
Yes NHS UK have approved the use of the FL but it is still down to a person's local Clinical Commissioning Group to authorise it to be prescribed.
That said I am absolutely amazed that the price of sensors hasn't changed in that time. In my working career I have been a buyer for different companies and would always negotiate the best price with suppliers. Why on earth aren't the NHS doing this with Abbott who supply the FL. I am sure if the price was lowered by Abbott they would sell more to be prescribed and let's face it it really comes down to money for CCG's as the proof of medical benefit and quality of life improvement is overwhelming.
Just my thoughts but I am sure many of you will agree.

 

[Mr_Tracy]

Hello everyone!

I don't have diabetes, but as you can see by my name I am a nursing student and I study in the Netherlands.
Currently, I am in my exam year and I have to do a research project about new innovations in the healthcare.
Since this forum is global I wanted to reach out to a broad group of diabetics to make a world map and mark all the countries it's used in.
My question is:

Do you use the FreeStyle Libre and which country are you from? Also, is your FreeStyle Libre reimbursed or do you pay everything yourself + what do you pay?

In The Netherlands, it's not reimbursed yet because of researches that are still going on. Users have to pay everything theirselves and the sensor costs €60 which you have to get twice a month and €20,- for 50 skintacs which are some sort of adhesives for the sensor to stick on the skin better.

I would really appreciate your help and thank you all so much in advance!

loves!

First time forum poster I am a 50 year Type 1 diabetic of over 25 years. I started using Freestyle Libre this year and found it very beneficial fo rease of testing and hypo awareness warnings. I pay £104 including P&P for 2 sensors every 5-6 weeks. I tend to go back to my old meter in between to rest my wallet. However my NHS region Forth Valley is one of only two in Scotland that have just agreed to fund the sensors on prescription from 1st November. The rules are that you have to attend a carb counting course first and on completion get a letter sent to your GP enabling him to add the sensor to your script. I actually signed up to a refresher course before I knew about this so I am hoping to be free of Freestyle costs before the end of 2017.

 

[prancer53]

I live in France. I purchased a Libre when it first became available The cost of sensors for full time use was prohibitive so I restricted their use to times when they would be most useful (walking holidays in particular) At the end of August I was prescribed a Libre and 2 sensors a month and had to undergo 'training' ie talk to my specialist who hadn't know about it when I first acquired it,I'd taught her!. Strips however are now normally restricted to 100 a year . I am about to return to the UK, the area where I will live has said
"
01 November 2017

We recognise there has been increased interest in FreeStyle Libre® sensors since the announcement that they will be listed in the Drug Tariff from 1 November. It is important to note, however that the Drug Tariff is not a list of recommended products and a review process is still required at a national and local level to decide whether FreeStyle Libre® Sensors are included on the pan-Dorset formulary.

In line with evidence received so far, NHS Dorset CCG continues to not support the NHS prescribing of this product until a full cost and clinical effectiveness review is available or further national guidance, such as NICE technology appraisal is issued

(Just to add) This means I won't get sensors funded; as my first task is to persuade them to continue funding my o pump that won't bother me that much.
.
My reasons for not being that concerned at present is that my control is relatively good and I don't think I can justify the use of a Libre full time . It is useful to see daily variations, it helps adjust insulin dosing and timing but that doesn't need to be done every week. There are times such as when I walk 20-30Km a day on a walking holiday when its use is invaluable (as a means to be proactive before glucose levels get too low)

Apparently in the area where I live no prescriptions are issued for anything necessary to use the Libre. Years ago I met NICE criteria for a CGM. GP didn't respond to my request. Recently, when I mentioned than normal BM meter readings were retrospective she told me that was all that was available. Tried to get CGM through hospital consultant who told me they were only used for diagnostic purposes. When I mentioned retrospective BM readings I told him about test results which were normal when I felt hypo but low after I had eaten glucose. He said I needed to test when I felt hypo---wake up doctor, what did I just say? Obviously didn't get a CGM.

 

[prancer53]

Apparently in the area where I live no prescriptions are issued for anything necessary to use the Libre. Years ago I met NICE criteria for a CGM. GP didn't respond to my request. Recently, when I mentioned than normal BM meter readings were retrospective she told me that was all that was available. Tried to get CGM through hospital consultant who told me they were only used for diagnostic purposes. When I mentioned retrospective BM readings I told him about test results which were normal when I felt hypo but low after I had eaten glucose. He said I needed to test when I felt hypo---wake up doctor, what did I just say? Obviously didn't get a CGM.

Son says I should complain to NICE--frankly cannot be a****

 

[agwagw]

Hello everyone!

I don't have diabetes, but as you can see by my name I am a nursing student and I study in the Netherlands.
Currently, I am in my exam year and I have to do a research project about new innovations in the healthcare.
Since this forum is global I wanted to reach out to a broad group of diabetics to make a world map and mark all the countries it's used in.
My question is:

Do you use the FreeStyle Libre and which country are you from? Also, is your FreeStyle Libre reimbursed or do you pay everything yourself + what do you pay?

In The Netherlands, it's not reimbursed yet because of researches that are still going on. Users have to pay everything theirselves and the sensor costs €60 which you have to get twice a month and €20,- for 50 skintacs which are some sort of adhesives for the sensor to stick on the skin better.

I would really appreciate your help and thank you all so much in advance!

loves!

Hi There! I've been self-funding my Libre system since March this year - it has made a huge improvement to my BG control. I will be continuing with it - though I am retired and on a pension, I can't contemplate going back to 10 fingerpricks per day - especially as they are not particularly helpful for close control for me. Costs are £48.29 per sensor (diabetics don't pay VAT on these items) plus about £4 postage on each order. I live in W Wales and as others in the UK have noted, there is great hope that they will become a prescription item. The savings from not doing so many fingerpricks are just about equal to the cost of the Libre sensors. Not heard of the skintacs.

Good luck with your research!

 

[Bud1979]

Hello @Nursingstudent_

I live in the UK and have used one Libre sensor on a trial. If I continue using them I will have to fund them but simply cannot afford the price of them right now at around £50 per sensor.

Hello what was the point of putting you on a trial then telling you if you continue to use them you must self fund ? That seems cruel in the extreme, I self funded them as I thought they were great, the only issue with them being they fell off frequently then my daughter got diagnosed t1 and I paid for her to get them but the cost became to great, but the benefits of the system are immense just for the removal of the fear, uncertainty, the normality the first time I felt these feelings in 40 odd years.

 

[Bud1979]

Hi There! I've been self-funding my Libre system since March this year - it has made a huge improvement to my BG control. I will be continuing with it - though I am retired and on a pension, I can't contemplate going back to 10 fingerpricks per day - especially as they are not particularly helpful for close control for me. Costs are £48.29 per sensor (diabetics don't pay VAT on these items) plus about £4 postage on each order. I live in W Wales and as others in the UK have noted, there is great hope that they will become a prescription item. The savings from not doing so many fingerpricks are just about equal to the cost of the Libre sensors. Not heard of the skintacs.

Good luck with your research!

In reference to skin tac I self funded them ( from USA) it’s a adhesive wipe and it’s amazingly strong, some say stronger than a Scotsman holding onto a £10 , but I can’t comment on that as up here we are that poor we only ever have £1 coins.

 

[db89]

Hello what was the point of putting you on a trial then telling you if you continue to use them you must self fund ? That seems cruel in the extreme, I self funded them as I thought they were great, the only issue with them being they fell off frequently then my daughter got diagnosed t1 and I paid for her to get them but the cost became to great, but the benefits of the system are immense just for the removal of the fear, uncertainty, the normality the first time I felt these feelings in 40 odd years.

I'm fairly happy as it gave me 2 weeks of useful information so that I could spot patterns in my routine and after eating different meals that I hadn't been able to see before. It also gave me a reader for free so if there comes an odd time I can treat myself to a sensor I will.

I didn't have any issues with adhesive on mine, it was practically welded to my arm the whole 2 weeks.

 

[Bluetit1802]

I also never need to use any tape or adhesive. None of my sensors have fallen off. They stick like limpets and I have problems prising them off at the end of the 2 weeks.

 

[agwagw]

I'm fairly happy as it gave me 2 weeks of useful information so that I could spot patterns in my routine and after eating different meals that I hadn't been able to see before. It also gave me a reader for free so if there comes an odd time I can treat myself to a sensor I will.

I didn't have any issues with adhesive on mine, it was practically welded to my arm the whole 2 weeks.

My experience is similar - they stick amazingly well as long as the skin is dry. The removal is quite painful unless I whip it off VERY quickly. (That being said, one did fall off overnight, the sticky patch was still anchored to my arm; it had detached from the sensor. Abbott replaced the sensor, great customer service.) The black octopus ring following detachment (I know...) can be removed with propanol wipes, nothing else I've tried touches it!

 

[agwagw]

Hi There! I've been self-funding my Libre system since March this year - it has made a huge improvement to my BG control. I will be continuing with it - though I am retired and on a pension, I can't contemplate going back to 10 fingerpricks per day - especially as they are not particularly helpful for close control for me. Costs are £48.29 per sensor (diabetics don't pay VAT on these items) plus about £4 postage on each order. I live in W Wales and as others in the UK have noted, there is great hope that they will become a prescription item. The savings from not doing so many fingerpricks are just about equal to the cost of the Libre sensors. Not heard of the skintacs.

Good luck with your research!

Just a follow-up. My latest order for sensors is going to be delayed by about 10 days - "unprecedented demand.." apparently.. So are they actually being prescribed leading to stocks running low?? My current sensor runs out before the delivery so back to fingerpricks... :-(

 

[Bluetit1802]

The black octopus ring following detachment (I know...) can be removed with propanol wipes, nothing else I've tried touches it!

I use nail polish remover, but I think it is the same thing - acetate.

 

[agwagw]

I use nail polish remover, but I think it is the same thing - acetate.

Good suggestion - much less expensive then the 'Zoff adhesive remover wipes' that I have been using. Great tip!

 

[Fearless36]

I'm not so sure. I don't think many people knew about it, and sadly the borough I'm in - doesn't have courses run like DAFNE so I shudder to think what any budget gets spent on (that's if there is a budget - I'm not so convinced and have yet to have seen anything from it). The healthcare I had at the hospital diabetic centre was really beyond a joke. I was at St Mary's in Paddington and they really couldn't give a monkeys about patients. The doctor I saw, said to me that he would see me at his clinic and thought for now it would be good to be monthly. However I chased him and his secretary several times over the course of 6 months and never heard anything nor did any appointments come through. The Libre I got was from an entirely different borough, but I went to a hospital outside my borough as I knew the care I was receiving in Westminster was way below par.

Do you think the lack of funding where you are is down to the sheer volume of people that would potentially be looking to get one...?

I though London and the surrounding areas would have access to more cash....