Freestyle Libre on NHS

[Fearless36]

This may also be due to the insulin you are now on also. They are much more concentrated nowadays and most people who are on them have less hypo awareness than in previous years.

Yes thats correct upto 10 times a day most days as I am 71 years old and my awarnes of hypos after 55 years of being a type 1 is not as good as it should be.Both my GP and hospital consultant say tesat as many times asa required to keep your glucpose above 6 which I try and do!

 

[Art Of Flowers]

I don't test much these days. I know the effect of the types of food I eat and only need to test if I am trying something new.

People could get huge benefits for having a Libre for a month and have time to fine tune their pattern of eating to minimise glucose spikes and hypos.

 

[annis54]

I'm in Queens Park, North West London, Zone 2 and I've been told that even though its supposedly on NHS, that no North West London practice is authorized to prescribe it which is a bit of a shame. For me, I have zero hypo awareness nowadays. So when I was using this device it definitely helped avoid hypos but its quite costly for me to use and fund myself.

 

[annis54]

I'm in Queens Park, North West London, Zone 2 and I've been told that even though its supposedly on NHS, that no North West London practice is authorized to prescribe it which is a bit of a shame. For me, I have zero hypo awareness nowadays. So when I was using this device it definitely helped avoid hypos but its quite costly for me to use and fund myself.

I was given a reader and sensor at my local hospital. It is quite accurate but I too think it is rather expensive. My family are all very happy with it though. Currently we are on an economy drive so that it is affordable. I looked at my weekly shopping bill and realised that I could save some money by buying cheaper products. I cut back on wine too. I've managed to reduce the weekly Tesco bill by nearly £20 so the Libre is more affordable. I was surprised by how much I saved when I sat down and looked at the receipts. Making a packed lunch for instance. Maybe you could do this too.

 

[Fearless36]

I already do packed lunches and make my own food and live on a budget that suits my needs. Any surplus cash I have nowadays is either eaten by housing bills or on clothes and I just don't have money to sadly throw around. I'm sure its a good investment its just out of my price range at the moment. However for me the reader definitely wasn't accurate - saying I was low when I was 5.4 isn't low at all in my blood glucose range. So I'm really skeptical of the device and not a fan of it because it was too inaccurate for me. Even Freestyle weren't that interested in feedback and wanted me to contact their customer service desk. I wasn't willing to waste unnecessary time and resources for it. If it can produce bad results once, that one time too many in my book.

 

[agwagw]

I am extremely interested in your comment. Please explain how it will save money? How much will it save? Who will it save money for? There are reckoned to be 400,000 type 1 diabetics in Britain and upward of 4,000,000 type 2's. How shall we decide who will get it on prescription and who will not? Every other diabetic in Britain is or should be as entitled to Libre as I am. Shall we then put upwards of 5,000,000 diabetics on prescription at a cost to the NHS of upwards of £70.00 per patient per month? 5,000,000 x 70 x 12 equals a bankrupt NHS. The NHS can barely stand up on its current financial commitments. Maybe some of the shareholders at Abbott can sub the NHS until pay day

As others have said, 10-12 blood strip tests per day at £15 per 50 strips (price for NHS) compared with £30 per sensor (Price for NHS) swopping to Libre would actually save the NHS money on the tests alone (I currently still do just one blood strip test a week for comparison). Factor-in the reduced complications in the long term the Libre (or equivalent) will save money for the NHS. I've been self-funding Libre since last March and it's made an enormous improvement to my Hb1Ac's - even though I am on a pension I consider it money well spent but would be so pleased if it came on prescription.

 

[drsugah]

There are no proper studies that using libre will bring hba1c down significantly..neither any which shows significant reductions of severe hypos... unless both this can be proven NHS will not fund this thing..our CCG is hearing a proposal: criteria include those testing more than 8 times per day, pregnant type 1s, severe hypos, recurrent DKAs.. etc.. if agreed these patients maybe funded but will have a review after 1 yr to see if criteria met or not to continue funding.. watch this space for CCG decision...Northampton CCG...

 

[cxl0702]

I asked my gp if I could get one in Lytham. They said I should be able to get the device for free and then buy the sensors. Well duh the device is an app thanks for that. And I think the daxcom is better than the Libre. But at 50 a week it is luxury I am vortunatley in position to have. I have been using one 3 weeks and been diabetic 4. I think at least they could do is prescribe if your 1 new to it all or 2 a little out of control. A month only could set someone on the right path. Having one has helped my gp and private consultant know that meds were not working and insulin was needed.

 

[MinaRotter]

I am extremely interested in your comment. Please explain how it will save money? How much will it save? Who will it save money for? There are reckoned to be 400,000 type 1 diabetics in Britain and upward of 4,000,000 type 2's. How shall we decide who will get it on prescription and who will not? Every other diabetic in Britain is or should be as entitled to Libre as I am. Shall we then put upwards of 5,000,000 diabetics on prescription at a cost to the NHS of upwards of £70.00 per patient per month? 5,000,000 x 70 x 12 equals a bankrupt NHS. The NHS can barely stand up on its current financial commitments. Maybe some of the shareholders at Abbott can sub the NHS until pay day

I think there are several arguments that are valid regarding saving money - those on a pump (myself inculded) test upwards of 8x/day. Using the freestyle libre cuts this down significantly - although not meant to be used for insulin dosage, I found it accurate enough to do just that and rarely capillary tested. Thus saving a significant amount on test strips.

There is also the long term argument that if it does indeed improve control (I believe this is the evidence Abbot used to get Nice to agree to allowing it's NHS use - although this was on a limited cohort) the cost in diabetes complication prevention could be enormous - I have CKD and am borderline for kidney transplantation. Also after 3 strokes I have had to retire. As a former GP paying tax of around £20-30k/year, I now live on a not negligible NHS pension. My medical training alone would have cost tens of thousands and I have had to retire 20+ years early. How much do you reckon I have cost the country due to loss of tax and cost of pension as well as hospital costs: (I've had 3 CT head scans and several days in hospital, potential kidney transplantation and all due to complications arising from poor diabetic control? I am just 1 case and due to these complications would probably have cost the country several thousand life time supplies of freestyle libre.

My diabetes team is applying for a funding based on a patient testing more than 8x/day but if it is eventually proven that it does indeed improve control with a much larger cohort, I personally believe there is an argument for all diabetics (especially those with suboptimal control) to be eligible for the libre. In my opinion, not doing so if the case for improved control is established, would just be looking at the short term costs and ignoring the longer term and hidden/indirect costs and the morbidity/mortality rates.

 

[Proto]

The way I see it I think the libre might end up being too expensive for the NHS to fund. It comes to £840 per year per person and they would also have to fund strips anyway due to DVLA rules and the fact that technically Abbott don't advise bolusing from the libre, you also have to factor in libre lag time during hypos which is one of the reasons Type 1s are prescribed test strips.

Someone testing around 8 times a day would come to about £860 a year. But considering the NHS would have to fund both the libre and at least 4 strips a day (to cover up to 4 meals on average) they would be calculating that they are paying out £1200 per person per year and thus isnt even taking into account the odd need for hypo testing.

Its a lot cheaper than full CGMs and provides us with another layer of information to improve out treatment but the NHS needs to assess the usefulness of the libre first which takes a lot of time (for example they would also have to take into account people who could be prescribed it under a guideline but unlike most of us self funding the libre, would not bother scanning or using it properly).

The problem is that we have all been able to get the libre the last 3 years to use so we can see the benefits but the NHS has its own case studies and cost analysis to do which unfortunately take time.

The addition to the formulary in November is just one of many steps that all medical drugs and devices go through except in this case Abbott made an anouncment so everyone assumed that they would be able to get it from November onwards.

 

[tim2000s]

This may also be due to the insulin you are now on also. They are much more concentrated nowadays and most people who are on them have less hypo awareness than in previous years.

This isn't true @Fearless36. We've been using U100 insulin in the UK for more than 30 years (100 iu per ml) as opposed to U40 (40iu per ml). There are "more concentrated" versions of Toujeo but they are not widely used. Secondly, I think you are referring to the switch over from animal to human insulin in reference to less hypo awareness. Typically, those started on analogue human insulins don't suffer too many issues. It was those who had to change over in the eighties that had the most problems.

they would also have to fund strips anyway due to DVLA rules

That's apparently about to change, according to some recent letters/announcements from the DVLA.

 

[Eireannn]

Currently in Merseyside the ccg have said that they will make a decision on if they will fund the libra in the next 6-12 months. As such no gp's can offer them with nhs funding.

Mike

I used to have the Libre which I was able to afford by PIP before they stopped my insurance :
Wishing so bad for the Libre to be available on the NHS in Merseyside

 

[Madmaureen]

Me too!!
I lost pip and find it really difficult finding the cash every month but I cut down on other t hings.
Pension only.type 1 48 yrs.
Love t he libra

 

[MPH 2]

I live in the Brighton and Hove CCG catchment.
My experience of getting the GP to actually prescribe the sensors. My consultant agreed I meet the criteria - hypo unawareness and more than 8 finger pricks per day. He wrote to the GP recommending me for a prescription of the sensors. This however, was not deemed by the GP to be an approval, so back to the consultant. I feel this system still needs time to bed into the NHS prescribing service, as it currently seems to be hit and miss whether you'll get a prescription, or whether you have to buy it yourself.

 

[robthevampire]

I live in the Brighton and Hove CCG catchment.
My experience of getting the GP to actually prescribe the sensors. My consultant agreed I meet the criteria - hypo unawareness and more than 22 8 finger pricks per day. He wrote to the GP recommending me for a prescription of the sensors. This however, was not deemed by the GP to be an approval, so back to the consultant. I feel this system still needs time to bed into the NHS prescribing service, as it currently seems to be hit and miss whether you'll get a prescription, or whether you have to buy it yourself.

MPH 2 Was it your consultant at "Diabetis care for you" that prescribed it?