Denied freestyle libre on NHS

[Jaylee]

Ok, you bring the trowels, I'll get Alan Titchmarsh...

That will be one hell of a trip.!

....Kind of like "Deliverance."

 

[LooperCat]

I am in total agreement with everyone here who is frustrated about the lack of access to Libre sensors on NHS. Most diabetes do care deeply about looking after themselves and whoever creates these silly rules about how much you test etc to qualify (even if getting it is even an option) should know it’s pointless. The only criteria is that if people don’t look after themselves once they are using these devices, there is no reason in them continuing to get it.

I find this device a game changer for my diabetes. The ability to check regularly and get insights about your blood sugar levels over the last period is beyond useful. For myself, not only has this meant now I am now averaging 5-7mmol overnight with good daytime control, it’s rare to have a hypo as it’s quick and easy to test as regularly as you like. All of a sudden finger pricking blood tests every 2 hours seems very inefficient, inconvenient and outdated.

For most of us, buying this device is way too expensive, leaving us having to buy it when we can afford it. So good control gets worse. It’s so frustrating. What I don’t understand is how the decision makers factor in the savings. Besides the tabs cost, it’s possible for health specialists to view data online (less appointments) and know exactly what our readings are, how often we take a reading and more. Would. a years worth of data (24 hours a day) not be more valuable that a HBA1C result? Would better control result in less laser eye treatments, less complications and less amputations that are very expensive to treat, let alone the reduction in our quality of life.

At the very least, I ask the decision makers in each part of the country to tell us how much would be saved by not using three pots of tabs and obtaining finger pricking needles each month. At least, if we cannot have it fee right now, start out being cost neutral by covering the money saved when you force us to buy our own sensors just so we can look after ourselves. But to leave most of us having to find the full price of £48 a sensor when the NHS can buy at £35 means they could at the very least allow us to buy at say £20 a sensor after factoring the tab cost.

But that’s only s short term fix. This device should be available free to everyone who takes responsibility to look after themselves and wants it, period.

If you go and spend £100 getting drunk on a Friday night and fall over and break your leg, the NHS will sort you out. If you go abroad and have cheap cosmetic surgery and it goes wrong, when you come home the NHS will likely sort you out. But if you have diabetes, a lifelong condition that none of us asked for, care about good control and would benefit from a device like the libre sensor, for many of us - you’re on your own, go pay £48 every two weeks.

I am seeing my consultant at the end of April and I intend to find out exactly why it’s not available and what the future it likely to be and then, who we need to lobby to get this device 100% on the NHS everywhere. It should not be a lottery.

Couldn’t agree more - but all new diabetes tech costs a lot for the patient when it first comes out and then becomes available to all/most on prescription. When I was diagnosed I had to buy my own needles for my pens or have syringes and vials of I wanted the free option. I’m hoping Libre becomes an option for anyone who wants it as soon as possible, looking forward to hearing how you get on with your consultant.

 

[Edge]

Couldn’t agree more - but all new diabetes tech costs a lot for the patient when it first comes out and then becomes available to all/most on prescription. When I was diagnosed I had to buy my own needles for my pens or have syringes and vials of I wanted the free option. I’m hoping Libre becomes an option for anyone who wants it as soon as possible, looking forward to hearing how you get on with your consultant.

I know that treating diabetes is very expensive and insulin is also expensive these days and that we are fortunate to be in UK and have a NHS. It’s a fair point that new diabetes tech is expensive at first.

One of by big frustrations in the intermediate period is that its an all or nothing situation. If NHS is buying at £35, why are we paying £48? You could even argue that if they sold it to us at say £30, with the saving on tabs, the costs for NHS would go down, not up. At least that is something. Overall, I would argue that new technology has a massive role to play in reducing costs whist improving care in the coming years - the problem is how do we stop commercial enterprises pushing prices up to satisfy their shareholders at the expense of NHS. Something does not feel very ethical when prices keep rising by so much on some drugs.

As one of the 10 latest employers in the world, maybe the NHS should be the ones developing some of the tech. There is no valid reason not to have some cost centres - But that’s another discussion.

Enough said, I will let you all know what happens when I meet my consultant.

 

[NicoleC1971]

I agree with all your points. Just wondering if you all see the same consultant and feel that you could have such a discussion? The decisions on FSL seem to be a communications disaster with NICE pronouncing before the English CCGs were ready to communicate their rationing rationale. It all feels like a holding pattern; fsl has huge implications for the way future discussions with consultants might go with all those patients empowered with data and 'time in range' figures rather than the HBA1 c blunt measure (a mean and not modal average I guess).
I hope your consultants are interested in how you are achieving such good results so that eventually cgm will become standard. After all it seems only 7% of type 1s get their target HBA1c of 6.5% so its not as if what we are doing now is working.

 

[Scott-C]

All good points, @Edge .

It's still very early days with this but there's been some early movers who might, hopefully, set the tone for other areas.

I'm in NHS Lothian. Out of the blue, I got a letter saying you're on our records as a T1, if you want libre on prescription, come along to a short meeting where we'll tell you about it (it was an amusing meeting - the 5 of us there obviously knew way more about it than the consultant) and then we'll give you a letter telling your gp to put it on prescription.

I'd read the formulary committee meetings minutes beforehand. They noted a lack of clinical data, which didn't look good, but they went on to put it on script anyway.

One of the interesting things the consultant said at our meeting was that, despite lack of clinical data, they knew how hard T1 is to deal with, if they were T1, they'd want it to make their lives easier, so they weren't going to deny it to actual T1s.

That's a remarkably liberal, foresighted view. I have no idea what sort of politics went on with the bean counters, but I suspect that, even though there's an apparent lack of clinical data, the docs who actually see us for 15 mins every 6 months have noted the amount of self funders turning up waving agp graphs and daily prints which make an a1c look primitive, with a new found confidence about them, and have just decided they want to see this. A doc told me that once - they like seeing this stuff.

The docs are convinced. It just remains to convince the bean counters.

I'd encourage any self funders to print out their agp graphs and dailies, and take them along to reviews. The doc will tell you your a1c, you'll be able to say, aye, fine, but here's how I got there. He'll want to know that stuff, and that will start persuading the bean counters.

Whether this change to libre will be reflected in less cost on expensive treatment of long term complications, short term hypo/dka ambulance callouts, I don't know, that's one for the bean counters, but I suspect the ccgs who are funding it reckon it will.

Wales is being very liberal, and around me there's Lothian, Borders and Forth Valley taking the same route. Things are moving in a positive direction on this and I think it's only a matter of time before other areas get on song.

Of course, if they don't, you can all consider moving to Lothian - Edinburgh does a damned good Hogmanay party!

 

[GeordieMark88]

Wanted to comment as noticed there was South Tyneside users on here like myself.

Did anyone have success?

I believe I could fit the criteria but not sure who to approach?

 

[sportyboston]

In Australia, I self fund my Libra the criteria is very narrow:

• Children and young people aged under 21 years with type 1 diabetes

• People with type 1 diabetes aged 21 years or older who have valid concessional status and have a high clinical need

• Women with type 1 diabetes who are actively planning pregnancy, pregnant, or immediately post-pregnancy

• Children and young people under 21 years with conditions very similar to type 1 diabetes who require insulin.

As I am not young, pregnant or on a concession card holder I do not qualify. It is expensive $92.00 plus postage (not available at pharmacy's) but the data is invaluable. I would prefer to go without something else to utilise what I have learned from the Freestyle Libra.

 

[Peter03]

I know that treating diabetes is very expensive and insulin is also expensive these days and that we are fortunate to be in UK and have a NHS. It’s a fair point that new diabetes tech is expensive at first.

One of by big frustrations in the intermediate period is that its an all or nothing situation. If NHS is buying at £35, why are we paying £48? You could even argue that if they sold it to us at say £30, with the saving on tabs, the costs for NHS would go down, not up. At least that is something. Overall, I would argue that new technology has a massive role to play in reducing costs whist improving care in the coming years - the problem is how do we stop commercial enterprises pushing prices up to satisfy their shareholders at the expense of NHS. Something does not feel very ethical when prices keep rising by so much on some drugs.

As one of the 10 latest employers in the world, maybe the NHS should be the ones developing some of the tech. There is no valid reason not to have some cost centres - But that’s another discussion.

Enough said, I will let you all know what happens when I meet my consultant.

I cannot believe the UK are not allowing the libre on prisciption, I live in France and have had the libre for more than 2 years on prisciption, I used to do at least 8 tests per day that meant I was using 250 strips per month at a cost of 125 euros per month, now I use 2 libre,s at a cost of 35 euros each saving the French health system 55 euros a month, so why the UK NHS will not allow all insulin dependant diabetics to have libre is unbelievable but then again I am amazed how little testing for diabetics health is done automatically in the UK,it seems some part of the UK are cared for and other parts of the UK are not, unlike France where all parts of France are treated the same

 

[NicoleC1971]

I cannot believe the UK are not allowing the libre on prisciption, I live in France and have had the libre for more than 2 years on prisciption, I used to do at least 8 tests per day that meant I was using 250 strips per month at a cost of 125 euros per month, now I use 2 libre,s at a cost of 35 euros each saving the French health system 55 euros a month, so why the UK NHS will not allow all insulin dependant diabetics to have libre is unbelievable but then again I am amazed how little testing for diabetics health is done automatically in the UK,it seems some part of the UK are cared for and other parts of the UK are not, unlike France where all parts of France are treated the same

NHS spends less than other European countries and we type 1s more often than not do not hit our target of an HBA1c of 7% and under! Not that a high spend on healthcare always leads to good results (see the US).
Out of interest, what tests do you get as a type 1 living in France?
In the UK as a reasonably complicated type 1 (have had eye issues), I get annual foot check, bi annual but usually 9 monthly given frequent cancelled visits to my diabetologist, lipids, kidneys and A1c. Eye checks are down to a minimum since I had surgery and no further complications are expected other than cataracts.
I have had carb counting education, access to a pshychologist and a dietician, pump and get a libre prescription subject to cancellation if I do not meet target hba1c.
I live in Surrey and am aware of disparities between various CCGs or between England, Wales and Scotland.
Should i move to France?!

 

[Peter03]

NHS spends less than other European countries and we type 1s more often than not do not hit our target of an HBA1c of 7% and under! Not that a high spend on healthcare always leads to good results (see the US).
Out of interest, what tests do you get as a type 1 living in France?
In the UK as a reasonably complicated type 1 (have had eye issues), I get annual foot check, bi annual but usually 9 monthly given frequent cancelled visits to my diabetologist, lipids, kidneys and A1c. Eye checks are down to a minimum since I had surgery and no further complications are expected other than cataracts.
I have had carb counting education, access to a pshychologist and a dietician, pump and get a libre prescription subject to cancellation if I do not meet target hba1c.
I live in Surrey and am aware of disparities between various CCGs or between England, Wales and Scotland.
Should i move to France?!

Here in France we get 3 monthly checks by our general doctor, two yearly visits to the diabetic consultant, yearly eye test, yearly heart checks plus a intensive heart check every 3 years, feet checked every year, blood test to include hb1c every 3 months, I have had an insulin pump for the last 18 years libre for over 2years, plus I can phone my consultant and get seen in an emergency straight away,it may not be the best in the world but when I first moved here 25 years ago it showed me just how bad the UK health system was,of course it may be better now, I have been a diabetic for over 50 years now, with many other auto immune problems and I think living in France is why my health has stayed so good and I can still enjoy life to the full

 

[Ushthetaff]

Hi I live in Scotland , I’ve been using the Libre on prescription for nearly 12 months now , I wasn’t asked how many times I was taking my bs I was at old by my consultant that it was going to be coming about in about 6 months time he said he would put me on a list I went on a course I was given a meter at the. Course with a sensor , i had the option to buy new sensors which I declined (£100. A month) about 6 months later they became available on NHS and I’ve been on them ever since.

 

[Ushthetaff]

One thing I will say is I have god diabetes 40 years and this is the biggest development for diabetes since the 1980s when synthetic insulin was introduced. There is always things in the press saying that diabetes is one of the biggest drains on the NHS. I know that the NHS has to “ balance the books” but it also needs to speculate to accumulate, the best way to stop complications of diabetes is to get better control , the Libre achieves this totally, for anyone in a working environment taking bs with the finger prick method is a nightmare especially if you working in heavy industry, that leads to a “ point and shoot” regime of insulin taking which in turn leads to poor control. I know as I was that guy, not any more thanks to the Libre, Hb1Ac now at 54 instead of 98+ constantly.
Let’s face it Theresa May uses one she must realise the benefits lol