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Luck with Libre

Discussion in 'Type 1 Diabetes' started by **shell**, Nov 28, 2017.

  1. **shell**

    **shell** Type 1 · Well-Known Member

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    Hi all

    I am reading more and more posts about how the Libre is changing the way people look and treat their diabetes so much so they can't live without it.

    My financial situation currently means I can't justify purchasing a Libre and so (like many) counted down the days until 1st November. Now a month on I'm wondering how many people have managed to get their mittens on a Libre prescription, without relying on a slightly in the dark GP who did a hand written prescription.

    I have approached my GP who could only find CCG criteria from 2015 and my DSN has never gotten back to me.

    X
     
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  2. karen8967

    karen8967 Type 1 · Expert

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    hi shell my gp said my request had to go to practise managment team so still waitng for them to get bk to me but dont hold out much hope :banghead::)
     
  3. DCUKMod

    DCUKMod I reversed my Type 2 · Master
    Staff Member Administrator

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    To be honest, **shell**, there doesn't seem to be any common criteria emerging, as yet for CCGs and their approval (or otherwise) processes.

    I attended the Diabetes Professional Care Conference a couple of weeks ago, and asked the lady from Abbott how it was all going, and she confirmed it's all really very bitty, with CCGs.

    This post will bump yourr thread up the lists a bit, and hopefully some others will comment as the evening traffic comes on line. There have been a number of threads relating to this, so a search might also help.

    Good luck with it all.
     
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  4. Ica291

    Ica291 Type 1 · Well-Known Member

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    I have now been told it's not being discussed until January now, so am still self funding the libre. Due to be induced a week Thursday, so financially will make a massive difference for me. Can honestly say that the libre is the only reason I've managed to have an hba1c of 47 throughout my pregnancy. It's so gutting that we were all expecting to get it from 1st November on prescription, wish they'd never said anything......

    I'm also disgraced by the way the services are dished out. Some of us won't be allowed a libre for example. My brother suffered a stroke 4 months ago which has left him pretty much blind and he's been told that he doesn't live in an area where the rehab services are available..... Disgusting. We're using a local mp to highlight his case, am wondering if we should do the same for libre, considering how life changing it is.

    Why do we pay taxes exactly???? So that others can be given houses and councils can have fancy offices and desks and a sense of importance?!
     
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  5. **shell**

    **shell** Type 1 · Well-Known Member

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    I know what you mean @Ica291. The way the NHS is funded in England is really quite shocking. Just cross the border into Scotland (and from what I understand) there is no such thing as a postcode lottery, the funding goes where it is needed. And we all pay our taxes to the same government!

    I wouldn't mind even if they agreed to part fund, say prescribe 12 sensors a year, with the reasoning that they are pretty **** good at just keeping an eye on things following adjustments etc but you can still finger prick.

    The Libre is similar I suppose to the hoops I had to jump through for my pump. Maybe I'll make an appointment with my consultant and turn on those water works.

    X
     
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  6. kev-w

    kev-w Type 1 · Well-Known Member

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    Where I live, the Vale of York ccg expect a decision by the end of the year, or so said the reply to my complaint, they pointed out that because NICE 'recommend' its prescription, it's not a legal obligation.

    Now if Diabetes UK (statements like 'we have done it') & Abbots had been truthful we'd not have got our hopes up. 3:)

    Edit, and that's not a reference to this site! :)
     
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    #6 kev-w, Nov 29, 2017 at 8:24 AM
    Last edited: Nov 29, 2017
  7. Ica291

    Ica291 Type 1 · Well-Known Member

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    I'm not sure it's the consultants dishing them out. They would happily given them to all their patients!

    one day, these posts will be irrelevant and it will be available to all. I have to keep reminding myself that my health is more important than my bank balance. To be honest, I can't live without one, I would freak out if I wasn't wearing one, so I'm hooked.....

    I think that if a service isn't available in an area then the taxes should be lower there as a result. Considering we all pay the same no matter where we live..... That's it, we're going to change our government one diabetic forum at a time! Lol. Good to rant though x
     
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  8. novorapidboi26

    novorapidboi26 Type 1 · Well-Known Member

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    My opinion is that if the libre has dramatic changes to the way someone treats the diabetes and they now can't love without it, that basically means they weren't really up to speed with dose adjustment before then....

    Get educated first and then the libre wont seem like a must have diabetic gadget....

    It's great for sure....but it shouldn't replace the basic knowledge and understanding....it should compliment it...
     
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  9. pshuttle

    pshuttle Type 1 · Active Member

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    Erm no. It has nothing to do with education and everything to do with giving people back an element of freedom in their lives.
     
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  10. becca59

    becca59 Type 1 · Well-Known Member

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    Well, all new innovations take time to become mainstream. Would we have said to the chap I know, who started out with a needle and a sharpening stone. You don’t need disposables they are just a diabetic gadget, let alone the insulin pen gadgets we now have. Technology moves on we should embrace it.
     
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  11. novorapidboi26

    novorapidboi26 Type 1 · Well-Known Member

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    Well, in the context of this post, which is in relation to the cost of the device and how its not affordable for some, the fact it cuts out some finger pricking isn't really enough for everyone to get one free on the NHS....not at its current price.....

    I would be pretty sure that the people getting most benefit wouldn't say it the absence of finger pricks which was the most significant, positive, change for them....
     
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  12. Glucobabu

    Glucobabu Type 1 · Well-Known Member

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    From what I understand, even if you are lucky to be switched to Libre, you are still supposed to finger prick regularly to confirm accuracy and also to meet with DVLA requirements for driving. So are the GPs who are loathe to even prescribe the type and number of strips you need, going to let you have both? My guess is they won't. Personally I would be happy to be given the strips I was used to for years before being switched to the cheapest horror I have been put on! I think Libre needs to be improved a great deal regards its reliability and price to be really viable for NHS.
     
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    #12 Glucobabu, Nov 30, 2017 at 6:11 PM
    Last edited: Nov 30, 2017
  13. Zaara7

    Zaara7 Type 1 · Newbie

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    My daughter using libre sensor last 2 months and it's very helpful for us to track the sugar level..
     
  14. tom58

    tom58 Type 1 · Well-Known Member

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    I live in France and I've had a Libre for three months, which my consultant gave me. It was approved as a fully refunded prescription device about six months ago. Don't think the take up has been very large at the moment because a number of health professionals have been very keen to look at my Libre. Libre truly is a liberation because it's discrete, instant and you can test as often as you like.
     
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  15. hh1

    hh1 Type 1 · Well-Known Member

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    My opinion is that some people with Type 1 have considerable difficulty with dose adjustment for all kinds of reasons which the Libre can help overcome. Plotting detailed trends in glucose levels isn't possible in the same way without a great deal of finger prick testing, for which there may be insufficient strips allowed on prescription. Many of those people will be well-educated in diabetes control and may have other health conditions which make good control harder, and again a Libre with its continuous monitoring can help with that. And beyond all that, living with Type 1 is hard enough and it seems to me that anything which helps get closer to what it's like to live with a functioning pancreas is to be welcomed rather than described as a gadget....
     
  16. mang_out

    mang_out Type 1 · Member

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    I went to my GP today and read a minute they receive from the NHS Lothian Medicines Management team. Its really only specific to Midlothians in Scotland but you can see the red tape we are all having to go through...

    Basically they have been informed not to prescribe the sensors until the system is added to the Scottish Drug Tariff(which it has in November been added http://www.isdscotland.org/Health-t...iff/Docs/November-2017/2017-11-SDT-PART-9.pdf see page 4). It seems they're not the only committee in on this as the Lothian Joiint Formulary has one too: From the minute it reads "The position of Freestyle Libre has yet to be established on the LJF and until that is agreed it is strongly recommended that GPs should not prescribe".

    So I went to the LJF website and requested this information:
    "Specific advice has been received from the Scottish Diabetes Group which details those individuals who may be suitable for this technology (Freestyle Libre). This advice emphasises this product should be initiated by secondary care diabetes specialist teams.

    I have been given a Freestyle Libre pack from my diabetes specialist team and have trialed the system for the past fortnight with groundbreaking insight and trend information never known in my 25 years of diabetes care.

    The position of Freestyle Libre has yet to be established on the Lothian Joint Formulary and until that is agreed it is strongly recommended that GPs should not prescribe.

    From the short time I have had this device the information that is at hand, trend information for past eight sleep hours, early warnings for hypos and hypers, duration and length of time for a hyper to stabilise. I was able to test my blood sugar levels 20-30 times per day. Reports and data that can be made available to diabetes specialists.

    It seems that GPs will not start issuing prescriptions for this system's sensors until it has been established by you the LJF, can you please tell me whether this system will be established on the LJF and when do you see this happening?"

    I am not expecting anything back, but hopefully this system will be established soon and we will be able to get it on prescription in the Lothian's of Scotland. Hopefully the brain's will realise just how important this new type of sensor can be. It's definitely no walk in the park
     
  17. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hi, I'm in your neck of the woods. iPAG has a page at the link below reporting on developments in each NHS area in Scotland which is worth keeping an eye on.

    Most of it is just reporting statements from each area about how they are still considering matters, but NHS Forth Valley seems to be a bit more upbeat about it all, some reports of people actually having been prescribed it.

    But what really caught my eye was the bits about three pharmacies in Larbert, Glasgow and Edinburgh selling them for between £35 to £40. Have no idea if this is true (obviously take everything on the internet with a pinch of salt until verified) but the names and addresses of the pharmacies involved are given, so I might check out the Edinburgh one. If true, and the pricing is correct, 20 to 30 quid saving per month, so not to be sniffed at.

    http://www.ipag.co.uk/abbott-freestyle-libre-prescribing-around-scotland/
     
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  18. **shell**

    **shell** Type 1 · Well-Known Member

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    Update since original posting...
    I am receiving a one sensor trial this afternoon!

    My DSN has however stressed that there is no sign of the Libre being accepted for prescription within my CCG, South Tyneside.

    I think to get the greatest benefit from the Libre you do need a good knowledge of your diabetes to allow you to act on the invaluable information it gives. I have been doing a lot of work on my levels, retraining (diabetic for 18 years) and just trying to get a better understanding of what and why. But I felt everything now comes around to "it's easier with a CGM".

    As many people have said we need to move with the times and utilise what is now available to us. I'm sure there will soon be a competitive market for CGM technology on the NHS, just look at the pump availability now! These things just take time. Unfortunately the NHS is yet to adapt to the Amazon Prime way of life.

    Having said that, I still want my CCG to hurry up!

    X
     
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  19. videoman

    videoman Type 1 · Well-Known Member

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    After 55 years on insulin,and then from urine testing to finger pricking to get the glucose results and having to "stab" my fingers up to 10 times aday , I was given the meter and 1 sensor to try and it help a lot which made my hospital consultant write a letter to my GP , saying could she perscribe the sensor but she said no as it was down to the local CCG?
     
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  20. Glucobabu

    Glucobabu Type 1 · Well-Known Member

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    As someone said before, we all pay the same Tax and NI so why are local CCG behaving differently? Shouldn't they be instructed to provide what's necessary on the NHS across the nation? Another question is why aren't other manufacturers getting in on the act? Surely more competition will improve quality and bring down prices!
     
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