Denied freestyle libre on NHS

[lish_26]

See I live in South Shields but with Sunderland hospital and I'm getting frustrated about the whole situation xx

Me too. It's giving me a lot of stress to be honest. I'm without a sensor at the minute and feel totally lost. Even using the DAFNE principles I still feel like I'm missing part of the puzzle. My problem time is through the night when I'm asleep and unless I set a hourly alarm through the night there's no way I can tell what is happening. Very frustrating

 

[novorapidboi26]

My problem time is through the night when I'm asleep and unless I set a hourly alarm through the night there's no way I can tell what is happening. Very frustrating

you wont be planning to test every hour through the night daily though......test and adjust till the dose is correct.....then thats you....done.....

then repeat that test every so often if and when required....

 

[lish_26]

you wont be planning to test every hour through the night daily though......test and adjust till the dose is correct.....then thats you....done.....

then repeat that test every so often if and when required....

My blood sugars fluctuate a lot when I'm asleep sometimes, not always. This past week i had been spiking between 1 and 5am. No food onboard. My sensor expired so I tested before bed, 5.5. Then at 1am I woke up and it was 11 so I corrected. Then at 6am it was 18. Without the libre I don't know what it's doing when I'm asleep and the cause of the morning high. I made this post to vent some frustration and get some support not justify why I think I need a libre

 

[novorapidboi26]

Without the libre I don't know what it's doing when I'm asleep and the cause of the morning high. I made this post to vent some frustration and get some support not justify why I think I need a libre

I am offering support on how to manage in the absence of a sensor, thats all......

It's a bit unrealistic to think of getting up through the night, every night, to make corrections.....

That would make for a miserable existence, wouldn't you agree..?

Its easy to misinterpret intention on forums.....but I am not trying to get you to justify anything...

 

[Q4444]

Why say it is available when it clearly is not.The only way to get it in my Clinical Commissioning group area is if you are admitted to hospital Do I have to let myself get into that state plus the consequences. We need to get rid of postcode prescribing in the health service

 

[NicoleC1971]

The rules for my bit of Surrey are the same and they have added an age restriction (kids under 4 who are probably least likely to be hypo aware and require a 3rd party to treat them) and a requirement to have gone to Dafne within the last 5 years. I think it is a great tool and am hopeful that it will get affordable and latterly that the pumps with hypo alerts (Medtronic I thinnk) will have hyper alerts too then even the artifiical pancreas! Even with carb counting and algorithms for dosing which some meters do, it is hard to hit our national type 1 HBA1c target of 6.5%!

 

[Copernicus]

http://ntag.nhs.uk/docs/rec/Freesty...statement Nov 2017 - final.pdf#search="libre"

These are the guidelines for us up here in Sunderland and Newcastle

Also from the North East, after handing this into my GP I am seeing her on Friday morning as according to their own guidlines, I meet the criteria set out by them. Watch this space.

 

[NoKindOfSusie]

It's a bit unrealistic to think of getting up through the night, every night, to make corrections.....

That would make for a miserable existence, wouldn't you agree..?

I often set an alarm for 4am, I started doing this when I realised lantus didn't really behave as advertised and I kept doing it while switching it from 8am to 8pm, and again when splitting it, none of which I had any sort of permission to do, by the way. I still do it more than half the time, especially if I am not between 5.5 and 6.5 when going to sleep and yes it is an utterly miserable existence, why wouldn't it be. It's an illness it isn't supposed to be nice.

 

[novorapidboi26]

I often set an alarm for 4am, I started doing this when I realised lantus didn't really behave as advertised and I kept doing it while switching it from 8am to 8pm, and again when splitting it, none of which I had any sort of permission to do, by the way. I still do it more than half the time, especially if I am not between 5.5 and 6.5 when going to sleep and yes it is an utterly miserable existence, why wouldn't it be. It's an illness it isn't supposed to be nice.

What permission are you referring to?

I wouldn't say getting up is totally necessary to be honest...unless it's spikes going up really high....

What were the spikes going up to..?...

 

[NoKindOfSusie]

What permission are you referring to?

I wouldn't say getting up is totally necessary to be honest...unless it's spikes going up really high....

What were the spikes going up to..?...

Until that point I would have waited to talk to someone with some sort of medical qualification before changing anything. I asked repeatedly and as they always do, they just said "oh well let's wait and see" or "hmm maybe next time" or "let's see how we're doing shall we?" They never do anything.

It wasn't a spike it was a gradual rise and I was always waking up over 7 which is not OK. At least I think it was a gradual rise, I did hourly tests a couple of times when I was up late and it went up gradually in roughly 0.75 mmol steps after a couple of hours.

 

[BeckiDover]

I personally think the current criteria to be able to get the freestyle libre on the NHS is stupid.
We all have Diabates, we all pay our taxes, we should all have access to the same equipment whether we manage our diabetes well or not. I understand cost is a huge factor and they prioritise people who need more support with their diabetes, but even those with good control would benefit from the libre and not just in terms of a reduced HbA1C but in the quality of their everyday life.

 

[Scott-C]

Until that point I would have waited to talk to someone with some sort of medical qualification before changing anything.

That's good - it's a self treated condition, we need to make our own judgment calls, and it sounds like you're starting to get the confidence to experiment with it.

and it went up gradually in roughly 0.75 mmol steps after a couple of hours.

That's good too. You're observing things, thinking about why they happened, and hopefully thinking about how you, as the person in charge of your shots, might adjust it. (A persistent rise like that after the last bolus has worn out suggests basal needs to be higher)

Some of your posts in the past have been very negative, but there's been a subtle shift recently - instead of saying, "I can't do this", you're starting to move towards, "How can I do this?"

That's a big step, carry on.

PS: you've mentioned in other posts getting libre funded. Pursue that. Stick a blucon on top, run it to xdrip+. It's a massive safety blanket knowing your phone will ring if you're going too high or low. You might actually get a full nights sleep instead of early a.m. testing.

 

[Rokaab]

It wasn't a spike it was a gradual rise and I was always waking up over 7 which is not OK. At least I think it was a gradual rise, I did hourly tests a couple of times when I was up late and it went up gradually in roughly 0.75 mmol steps after a couple of hours.

To be honest I'd be happy waking up at 7, some mornings (according to my libre) my blood sugar level has started going up at about 3am (starting at about 5ish) and has been at 16 by the time I get up at 6:30am - now that's a spike! - thanks mr liver!
Waking up with your blood sugar at 7 is nothing to worry about

 

[NoKindOfSusie]

That's good - it's a self treated condition, we need to make our own judgment calls, and it sounds like you're starting to get the confidence to experiment with it.



That's good too. You're observing things, thinking about why they happened, and hopefully thinking about how you, as the person in charge of your shots, might adjust it. (A persistent rise like that after the last bolus has worn out suggests basal needs to be higher)

Some of your posts in the past have been very negative, but there's been a subtle shift recently - instead of saying, "I can't do this", you're starting to move towards, "How can I do this?"

That's a big step, carry on.

PS: you've mentioned in other posts getting libre funded. Pursue that. Stick a blucon on top, run it to xdrip+. It's a massive safety blanket knowing your phone will ring if you're going too high or low. You might actually get a full nights sleep instead of early a.m. testing.

Don't get too excited that was all weeks ago.

The thing that really makes me angry is just how this happens. Nobody told me it was OK to decide to do that. I was terrified. I thought I would get yelled at for it (in the end I just haven't seen the person I thought would yell at me.) I have no confidence that any of it is right because how am I supposed to know what I'm doing? I'm not a proper diabetic, I have no idea. I'm not you guys (I don't want to be, you're weird). I haven't been doing this a billion years. What if I am now doing something utterly stupid that is going to cost me in the long run? Why don't they tell you anything? Why didn't THEY say "carry on?"

The rise is just the lantus running out, it used to happen after about 1-2am when I took it at 8am. I hated that because it just said:

This is what will happen to you if you stop treating it. You are dying.

 

[Scott-C]

Don't get too excited that was all weeks ago.

The thing that really makes me angry is just how this happens. Nobody told me it was OK to decide to do that. I was terrified. I thought I would get yelled at for it (in the end I just haven't seen the person I thought would yell at me.) I have no confidence that any of it is right because how am I supposed to know what I'm doing? I'm not a proper diabetic, I have no idea. I'm not you guys (I don't want to be, you're weird). I haven't been doing this a billion years. What if I am now doing something utterly stupid that is going to cost me in the long run? Why don't they tell you anything? Why didn't THEY say "carry on?"

The rise is just the lantus running out, it used to happen after about 1-2am when I took it at 8am. I hated that because it just said:

This is what will happen to you if you stop treating it. You are dying.

I suppose it's possible that an eccentric bearded hipster PhD student on a trip to the Amazon will discover a rare orchid which cures us all, but, for the time being, we're all T1 and have to deal with it.

How you approach that is up to you. You can either take the Marvin Paranoid Android route, or the Daily Mash badger Bring It route. I've chosen the latter.

 

[Jaylee]

I suppose it's possible that an eccentric bearded hipster PhD student on a trip to the Amazon will discover a rare orchid which cures us all,


View attachment 25654

What's stopping us from throwing our supplies in a Frio & avin a go with a machete & trowel ourselves...

 

[tim2000s]

What's stopping us from throwing our supplies in a Frio & avin a go with a machete & trowel ourselves...

Can’t be ***** with the trip. That’s why we’re building computers to do it for us...

 

[Scott-C]

What's stopping us from throwing our supplies in a Frio & avin a go with a machete & trowel ourselves...

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

 

[therower]

So I've just ordered my Phalaenopsis tetraspsis from Amazon.
How do I use it?
How long before I'm cured?
Why the f**k do I need Alan Titchmarsh?

 

[Edge]

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.