1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

CGM / Libre funding- who has it?

Discussion in 'Type 1 Diabetes' started by donnellysdogs, Jul 23, 2016.

  1. videoman

    videoman Type 1 · Well-Known Member

    Messages:
    192
    Likes Received:
    98
    Trophy Points:
    68
    Hi, I was given a Libre to try with 1 senser which worked well for me as it shown when I was going "low" without the warning signs.My hospital consultant wrote to my GP asking if I could be given the senser as a exceptional case and my GP said NO
     
  2. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    The libre wasnt available previously under an exceptional case for funding. Your consultant should have known that.

    Now there is NICE guidance (this week) for Libres then your consultant / GP may be able to offer it. It would have to be instigated by consultant. However, it is early days and consultants may not have organised anything yet.

    Make yourself aware of the new NICE guidelines, print them off and take with you...

    Ask again.

    I still have funded sensors currently but if continued funding is refused I may see initially what the response is to Libre from consultant before I self fund the guardian connect.
     
  3. tim2000s

    tim2000s Type 1 · Expert
    Retired Moderator

    Messages:
    8,917
    Likes Received:
    11,786
    Trophy Points:
    198
    Just to be clear, these are not new guidelines, this is a NICE technology briefing and of its own is unlikely to result in funding as it leaves rather a lot of unanswered questions.
     
    • Like Like x 1
  4. bobcurly

    bobcurly Type 1 · Well-Known Member

    Messages:
    108
    Likes Received:
    59
    Trophy Points:
    48
    Yes funding for the enlite sensors with medtronic pump for 10 year old as she.d had multiple admissions (blue light) due to severe hypos at night even on 1 unit of levemir. Her pancreas seems to randomly produce insulin then not at night so the pump switches off and audibly alarms when low. No admissions to hospital since we got it 4 months ago. Previously i was funding her libres which i actually prefer but they dont talk to the pump.
     
    • Like Like x 2
  5. CathP

    CathP Type 1 · Well-Known Member

    Messages:
    193
    Likes Received:
    143
    Trophy Points:
    83
    We've recently got NHS funding for dexcom for my hypo unaware 6 year old. Amazing after self-funding for a year. We're in Wales and the new diabetes document for a Wales along with nice guidance seems to have swayed them.
     
    • Like Like x 1
  6. hughsey

    hughsey Type 1 · Active Member

    Messages:
    34
    Likes Received:
    10
    Trophy Points:
    48
     
  7. clanders

    clanders Type 1 · Active Member

    Messages:
    44
    Likes Received:
    21
    Trophy Points:
    48
    I have enquired about CGM. I am a type 1 (45 years), have no hypo awareness, am no longer allowed to drive (even though I have never had a hypo induced accident) and have lost my job. My CCG will not follow NICE guidelines which clearly states CGM can/should be funded for type 1's who are asymptomatic to hypos. My diabetic team have told me that the CCG do not fund CGM. I would have thought CGM is more cost efficient than emergency service responses, potential surgery and vision loss. We all know the NHS does not have endless resources but CGM would seem to save significant costs in later life for brittle diabetics (I am one of those too) who are asymptomatic to hypos. Meanwhile I am just trying to stay alive and don't have the energy to appeal/fight.
     
  8. ringi

    ringi Type 2 · Well-Known Member

    Messages:
    3,366
    Likes Received:
    1,219
    Trophy Points:
    158
    @clanders How many times are you admitted to hospital per year that could be saved with a CGM?
     
    • Like Like x 1
  9. catapillar

    catapillar Type 1 · Well-Known Member

    Messages:
    3,390
    Likes Received:
    2,892
    Trophy Points:
    198
    I currently have enlite sensors funded for the Medtronic 640 pump, with low suspend. These are funded directly by the hospital and not by my CCG, so far as I understand it. I certainly haven't yet had an IFR submitted to the CCG.

    I don't get along particularly well with the enlite sensors and prior to this was self funding a dexcom. Hospital have told me they will arrange for dexcom to be funded if I decide not to continue with Medtronic.

    I'm only just over 6 years diagnosed. I have no hypo awareness and numerous incidents of severe hypos, particularly overnight, including an episode of hypoglycaemic hemipelgia and several ambulance call outs for hypos requiring glucagon and IV dextrose to bring me round.
     
  10. AFoxy74

    AFoxy74 Type 1 · Member

    Messages:
    23
    Likes Received:
    48
    Trophy Points:
    53
    I was at a talk yesterday, my consultant thinks that the libre will be funded by NHS as a replacement for finger prick tests as the cost would be less but you still have to finger prick test before driving etc! There is funding for CGM but only in certain circumstances! He was hopeful that the likes of animas and medtronic will make pumps with CGM built in to be that step closer to an electronic pancreas, will stop/start insulin delivery depending on CGM readings.
     
    • Like Like x 1
  11. TheBigNewt

    TheBigNewt Type 1 · Well-Known Member

    Messages:
    1,167
    Likes Received:
    374
    Trophy Points:
    123
    You need Dexcom because it will alert your phone when you're getting low (at night). That could be lifesaving for you from what you describe about your hypo events. Forget Libre, no alerts with it. My friends' 11 year old son used it from the get go and does great. It even alerts my friend.
     
  12. TheBigNewt

    TheBigNewt Type 1 · Well-Known Member

    Messages:
    1,167
    Likes Received:
    374
    Trophy Points:
    123
    It may be able to stop insulin delivery when you're getting low but I bet it can't increase them when you're getting high. That could be a liability issue if for some reason the thing says you're high and you really aren't and you're asleep and it jacks up your insulin infusion. Bad news.
     
  13. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    Have you asked your Consultant or GP to complete an exceptional funding request?
     
    • Like Like x 1
  14. Angusc

    Angusc Type 1 · Well-Known Member

    Messages:
    112
    Likes Received:
    53
    Trophy Points:
    88
    the only way I got cgm and pump was to price up hospital admission's and argue that a pump and cgm was cheaper than the admission's as I had no hypo awareness and had 6-10 admission per year and the running cost of pump and cgm was about equal to 4 admissions per year therefore the pump and cgm were more cost effective treatment as I've had no diabetic admissions since for 4-5 years which has save a lot of money and improve my life a lot. but this took 7+ years fight and involved my MP
     
    • Like Like x 2
  15. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    The medtronic guardian connect is a standalone sensor and is very, very accurate for me. It realaus data straight to iphone. No receiver necessary or pump.

    Hospitals have to get funding from somewhere for CGM's.

    I know of one hospital that will fund without exceptional or individual funding forms being completed. They are tge exception to rule.

    If your CCG has a policy statement regarding funding of CGM's then you can normally check on line or under the FOI Act ask for a copy of their position statement.

    If no position statement by the CCG then funding could be easier for a CGM.
     
  16. catapillar

    catapillar Type 1 · Well-Known Member

    Messages:
    3,390
    Likes Received:
    2,892
    Trophy Points:
    198
    Thanks. Did you actually read my post that you replied to? My post didn't mention libre. As stated in my post I have used a dexcom previously. Do you understand what the 640 pump with low suspend is? This is a semi closed loop insulin pump which turns off insulin delivery when the sensor thinks you are dropping low.
     
  17. tomfalc

    tomfalc Type 1 · Member

    Messages:
    20
    Likes Received:
    11
    Trophy Points:
    43
    My consultant has twice asked for funding for CGM for me as I have gastroparesis which makes predictable control difficult. I have demonstrated that CGM helps, and the funding committee has agreed that it does. However the first time they rejected my request as they couldn't afford it, and this time they had patients with higher priorities. They have, however, announced that they are building a set of criteria that they will use for funding in future. Apparently each area can set up is own criteria.
     
    • Like Like x 2
  18. clanders

    clanders Type 1 · Active Member

    Messages:
    44
    Likes Received:
    21
    Trophy Points:
    48
    Hi. I currently live with my daughter and she deals with my hypos. I've had 2 ambulance calls for hypoglycemic collapse in public areas. I always refuse hospital admission. Even the cost of emergency service call out would be more expensive than CGM. Northampton CCG will not fund CGM. They have 'other priorities for their budget.'
     
  19. clanders

    clanders Type 1 · Active Member

    Messages:
    44
    Likes Received:
    21
    Trophy Points:
    48
    Hi Donellysdogs. I haven't asked my GP for this as I understand this would be a waste of her time. My GP is wonderful, My specialist diabetic team have told me CCG will NOT fund CGM. My GP and diabetic team will support my application for a medical assistance dog once I have completed DAPHNE
     
  20. tigger

    tigger Type 1 · Well-Known Member

    Messages:
    555
    Likes Received:
    386
    Trophy Points:
    103
    I got funding for the enlite while pregnant and for 3 months post natal. It took 4 weeks for them to get me a pump (most of which was waiting for the rep to be free, not a funding delay) and 16 weeks to get the sensor. I didn't have a great experience with them, found them quite inaccurate. I then tried self funding a libre (and still do but not all the times) and got interested in trying a dexcom to see if it was a better experience and to try to do the nifty open loop systems that @tim2000s blogs about. I asked my consultant and I don't meet the criteria which he said was disabling hypos or a huge drop (30?) in hba1c and mine is well in target. So back to the soldiering iron to try and turn the libre into a cgm......
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook