Libre Freestyle

[johnsands64]

I am a type 2 diabetic but injecting Insulin. I have been told that I cant be prescribed the Freestyl Libre glucose monitor because I am type 2 and have purchased them my myslef but they are very expensive at over £50 a sensor that lasts approx 2 weeks. I find monitoring my glucose using the finger prick method as painful and only gives you a window in to your sugars and when I use the sensor I can trully monitor an control my sugar levels. Anyone else have the same issue or could this be limited to my area? I live in the Portsmouth area.

 

[EllieM]

I am a type 2 diabetic but injecting Insulin. I have been told that I cant be prescribed the Freestyl Libre glucose monitor because I am type 2 and have purchased them my myslef but they are very expensive at over £50 a sensor that lasts approx 2 weeks. I find monitoring my glucose using the finger prick method as painful and only gives you a window in to your sugars and when I use the sensor I can trully monitor an control my sugar levels. Anyone else have the same issue or could this be limited to my area? I live in the Portsmouth area.

Hi @johnsands64 and welcome to the forums.

UK prescribing for the libre is still relatively new and in flux. It used to be that almost no one got it, then it became available to some T1s, and in April the rules changed so that it became available to all insulin dependent T1s and some insulin using T2s. There's an interesting article here,

Getting a free CGM, flash glucose monitor (Freestyle Libre) or insulin pump on the NHS – who should qualify?

If you live in England, Wales, or Scotland, see the latest guidelines on whether you — or someone you’re supporting— should be eligible for a flash glucose monitor (Freestyle Libre), continuous glucose monitor (CGM) or insulin pump to help manage diabetes. If you live in Northern Ireland, you’ll...

www.diabetes.org.uk

But remember that the rules for T2s are very similar to the rules that applied to T1s a year ago, so I would hope that as time passes the rules will be relaxed and more T2s will qualify.

(I'm in New Zealand which doesn't yet supply them to anyone, so I feel very lucky that I can afford to self fund and can feel your pain.

)

 

[johnsands64]

Hi Ellie thanks for this information and under the guidelines I dont yet qualify, there advice is to finger prick eight times a day which is rediculous. I just have to get one when I can afford to. Thanks again for your help with this.

 

[onnecar]

I am a type 2 diabetic but injecting Insulin. I have been told that I cant be prescribed the Freestyl Libre glucose monitor because I am type 2 and have purchased them my myslef but they are very expensive at over £50 a sensor that lasts approx 2 weeks. I find monitoring my glucose using the finger prick method as painful and only gives you a window in to your sugars and when I use the sensor I can trully monitor an control my sugar levels. Anyone else have the same issue or could this be limited to my area? I live in the Portsmouth area.

I am in the same boat. You can get a free trial of librefreestyle on line for a sensor and the app is free to download. I am currently doing the trial as finger pricking every 2 hours when driving is not viable for me. I am happy with the trial so have sent off for 2 more sensors, arriving today. They are expensive and hopefully will eventually be on prescription for all type 2s. I have not tried the Dexcom so would like to hear any comments on that one. I would like to go swimming with mine but there are limitations. Also the measurements of libre don't match up to a finger prick test. Especially if your bloods are swingy. The isf measurement is always 5 mins behind the blood test.

 

[In Response]

Hi Ellie thanks for this information and under the guidelines I dont yet qualify, there advice is to finger prick eight times a day which is rediculous. I just have to get one when I can afford to. Thanks again for your help with this.

Why is it ridiculous to finger prick 8 times a day?
When you get up, before each meal, 2 hours later and before you go to bed.

I appreciate Type 1 is different but I had no trouble testing 10 times a day before I first got a Libre and given the duration of "fast acting" insulin (4 hours), the 2 hours after eating is not relevant.

 

[JohnEGreen]

I have been diabetic now for several years induced by prednisolone I have been self funding both meter and Libre for some while. I have recently been provided with a meter and strips on prescription the reason for this is that my eGFr has fallen to 33 over the past few months and therefore need to monitor my blood sugars closely but I will not be provided with a Libre on prescription so will have to carry on self funding my Libre sensors if I wish to continue with the Libre which I am going to do for awhile at least. I too hope that the guidelines change again in the near future but I normally would before getting a Libre test on waking then before and after each meal of the day and at bed time so eight times a day does not seem excessive remember you have eight fingers and 2 thumbs to choose from and if you have your lancing device set properly it should not be too painful.

 

[onnecar]

Why is it ridiculous to finger prick 8 times a day?
When you get up, before each meal, 2 hours later and before you go to bed.

I appreciate Type 1 is different but I had no trouble testing 10 times a day before I first got a Libre and given the duration of "fast acting" insulin (4 hours), the 2 hours after eating is not relevant.

Hi Ellie thanks for this information and under the guidelines I dont yet qualify, there advice is to finger prick eight times a day which is rediculous. I just have to get one when I can afford to. Thanks again for your help with this.

I totally agree about the finger pricking thing. You can get sore fingers apart from other reasons such as time and location if you lead a busy life. Driving? travelling? Eating out? Scanning is the way forward, although expensive if you don't qualify. Still need to prick now and again though and in certain cases, so can't quite ditch the finger pricker lol. Also sensors can fail or come off. Hopefully not too often. I'm new on insulin so need to know what my glucose levels are and what trends are happening. The app helps a lot with that. I like to go on long walks too, so again scanning is far easier.

 

[In Response]

Libre is not a replacement for finger pricking
- finger pricking is still required and does not have to give you sore fingers if you understand how to use the kit as most longer term T1s know from experience. Many of us have finger pricked 6+ times a day for decades
- thinking of Libre as no more than a finger prick replacement is like thinking of smart phones as no more than a replacement for home phone. The value of Libre is understanding, interpreting and responding to the additional information it provides and requires training which may be online or may be face to face.

 

[onnecar]

Libre is not a replacement for finger pricking
- finger pricking is still required and does not have to give you sore fingers if you understand how to use the kit as most longer term T1s know from experience. Many of us have finger pricked 6+ times a day for decades
- thinking of Libre as no more than a finger prick replacement is like thinking of smart phones as no more than a replacement for home phone. The value of Libre is understanding, interpreting and responding to the additional information it provides and requires training which may be online or may be face to face.

It's not a complete replacement for finger pricking but finger pricking is not necessary very much. Mainly there as a back up really. As technology improves even further I'm sure it will completely and utterly replace it. I disagree about the value of Libra. The added info, graphs and averages is very useful, but the most useful thing is not having to finger prick. Different opinions, all valid I guess.

 

[Grandadfatboy]

I'm a insulin dependant type 2. Initially I was prescribed insulin temporarily to stabilise my blood sugars whilst having chemotherapy. Sadly I'm now totally insulin dependant.

I received a phone call from my diabetes team, asking if I would be willing to take part in a trial of the Libra 2 glucose monitoring system. She explained that were trialling patients who they thought would gain the most from having the system.

I've had my Libra 2 for around 10 months now, and with exception of 2 sensor failures, that were replaced by Abbott, the system is working well for me. I was finger pricking up to 8 times a day, especially when I was having chemotherapy. Being able to scan a see my BS and see if they are remaining stable, or rising or falling quickly allowing me to take action.

I still finger prick and add a note to the reading of the corresponding Libra scan, especially if I get a reading from the sensor that I wasn't expecting and when I'm on high dose chemo.

 

[onnecar]

I had to drive my elderly mother around as she had a fall. Plus being new to insulin had to check levels a lot. So took Abbotts offer of free 2 week trial up. I'm happy with it so far. Although it's less than 2 weeks so far. I finger prick now and again, but that isn't quite so crucial for me at the moment. If my levels get lower, may need to. The graphs and patterns are useful too. I have been informed that as far as disposal goes, the sensor itself should go in a sharps bin. Not sure with the applicator. I was originally told that could go in plastics but now think it may have to go in biohazard. Is that really necessary?

 

[jaywak]

I think it is still a post code lottery if you get a Libre or not ! earlier this year I asked if I could have one as I have been type 1 for 47 yrs to only be told that as my control was quite good there were many more type 1s in front of me who would benefit more from it than me , I stamped my feat for a while but eventually gave up , i'me in Norfolk by the way were everything seems a bit slower !

 

[onnecar]

You should qualify if you are type 1. I'm type 2, most of us don't qualify and have to self-fund unfortunately.

 

[jaywak]

I know I should qualify but it doesn't seem to work that way, well it didn't for me , they got quite annoyed when I told them under the NICE guidelines from 1 st April every type 1 would be entitled to a Libre , they said it was only a guideline and the final decision was down to them .

 

[onnecar]

It is a guideline I suppose and not a stipulation. Cash strapped surgeries probably won't be able to comply unfortunately. That's why I think any type 2s that get it funded are extremely lucky. I personally think that all diabetics should have one. It would save the NHS a lot of money in the long run too.

 

[jaywak]

It was the consultant at the hospital diabetic clinic who said I couldn't have one , I think he said there were more than 150 more deserving cases in front of me so it could be quite a while before I get one .

 

[DavidDK]

It was the consultant at the hospital diabetic clinic who said I couldn't have one , I think he said there were more than 150 more deserving cases in front of me so it could be quite a while before I get one .

jawak, I understand that what you have been told isn't quite correct.

If you live in England the  only qualification now for having access to a flash glucose monitor (at least) such as the Freestyle Libre 2, or a real time glucose monitor (at best) is having Type 1 diabetes.

If you really, really want a Libre, may I suggest you contact Professor Partha Kar, the NHS England co-lead for Diabetes. Professor Kar has been leading in getting diabetics the technology necessary to manage their diabetes.

Professor Kar will be happy to "encourage" your diabetes clinicians to provide you with the technology you want. Professor Kar has been extremely successful at helping other diabetics get the technology they need.

Of course, you need to decide whether you want Professor Kar to push your clinicians on your behalf.

 

[sue512]

How far off is it before no skin has to be broken do you think? I’m self funding libre at moment and inadvertently dripped a trail of blood around the house after applying a new sensor! (Thank god for hard floors!) I was reading an article where a sensor is being trialled in cardiff that doesn’t break skin,wouldn’t that be a treat?

 

[becca59]

@jaywak Norfolk is indeed at the bottom of the league table for fulfilling the requirements. Personally I think your consultant was extremely condescending. To have this disease for 47 years should command a little more respect. The answer you were given is absolute hogwash and just an excuse. They are just being awkward. As Partha Karr says daily on Twitter - to the reluctant prescribers there is absolutely no reason a patient shouldn’t be given Libre 2 or Dexcom 1 if they ask for it. He was in fact on Radio 5 the other day repeating the same mantra.
Don’t give in.

 

[onnecar]

That's appalling.