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. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    Just wondering how many persons have managed to secure CGM Funding? For this purpose I will also ask if anybody has secured LIBRE funding.

    I have put in my notes to APPG for them to look at this website for real life experiences of peoples experiences for funding and whether these items if technology have helped.

    As NICE do not approach real patients for feedback I was hoping for peoples experiences..and please would you if you would confirm if you would allow me to copy your experiences as evidence to the APPG.

    NICE do not ask for feedback from "real patients".. I am recommending that the govt ask for genuine feedback to be gained from users of technology and jow it has helped or hindered them. Please can you confirm at end of your experiences whether I have permission to use your details..

    Please do not give the name of your CCG or hospitals...

    Here goes for me:

    I currently have a libre for a few weeks from my CCG. There after I have to pay.
    The nurse sent me off with it without even setting up whether I have 1 unit injections or 0.5 injections. The nurses did not even know the password for health professionals to enter to set this equipment up properly but they have put groups of people on Libres for a period of two weeks only. I questioned my nurse and she did not even know the libre had health professional password to set up details as advanced rather than basic! To me, without nurses entering their password to set the Libre up correctly it is only 1/2 useful.

    I have the Libre for longer than 2 weeks due to lymph node removal and mastectomy and only able to test in 4 fingers. Due to other issues regarding foods and meds I need to test often -and more frequent than others.

    My current CCG do not fund CGMs even for people that have lost their driving licences and without hypo awareness. (Incidentally it isn't me!!). My CCG need written evidence from the patient as part of consideration for 3 month funding. They will not fund a CGM longer than this. The CCG do not realise that many, many persons may not have skills adequate to write written evidence, especially when they may have other debilitating illness or indeed disabled or dyslexic or illeterate etc.

    My consultant has been refused funding even for people that he considers it would help. I believe this refusal undermines Consultants and certainly with me, despite other health issues the Consultant will not request a CGM for me because he has been turned down previously. He has 6 pages of evidence from me.

    I had a fully funded CGM prior to moving to this CCG. I do not understand how one CCG and Consultant can give readily but another can't.

    My diabetic consultant is now having a group meeting with other health professionals that look after me. I had to ask to be invited to this meeting.. But it may add more emphasis to my CCG to fund a CGM. This, however is ongoing.

    I agree for the details of my experience to be sent to the APPG.
     
    #1 donnellysdogs, Jul 23, 2016 at 12:15 AM
    Last edited by a moderator: Jul 23, 2016
  2. CarbsRok

    CarbsRok Type 1 · Well-Known Member

    Messages:
    4,696
    Likes Received:
    5,290
    Trophy Points:
    178
    I have funding from a benevolent fund for my CGM. CCG point blank refused funding saying there were plenty of type 1's using steroids thus I was no different than any other type 1 (they have no concept regarding Addison's disease and diabetes) As an added bonus they also had the cheek to write to me stating that as no one else in the CCG had funding for a CGM then it wasn't fair to give me the funding.
    I did point out that I didn't think it was fair I had both Addison's and diabetes either but that fell on deaf ears.
     
  3. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    Thanks Carbsrok..so a summary is that your CCG as a total blanket ban on funding libre or CGM?

    May I use your example please? Nicknames will be removed..
     
  4. CarbsRok

    CarbsRok Type 1 · Well-Known Member

    Messages:
    4,696
    Likes Received:
    5,290
    Trophy Points:
    178
    Yes complete ban on CGM not to sure about the libre but suspect that also applies mind you it's Cornwall so suspect they are just about out of the ark their knowledge is so bad.

    By all means use my example you are more than welcome.
     
  5. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    @CarbsRok can I ask if you have found your CGM a help in controlling levels and your wellbeing please?
     
  6. CarbsRok

    CarbsRok Type 1 · Well-Known Member

    Messages:
    4,696
    Likes Received:
    5,290
    Trophy Points:
    178
    Yes it's a fantastic help and a definite improvement on quality of life. I would hate to not have the CGM now.
     
    • Like Like x 2
  7. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    Anybody else please thats willing to comment on their experinces of CGM/ libre use and also funding?

    Thanks Carbsrok...
     
  8. yingtong

    yingtong Type 1 · Well-Known Member

    Messages:
    487
    Likes Received:
    1,399
    Trophy Points:
    178
    Hi donnellysdogs,I'm into my 2nd year of funding for my CGM and it is funded by my CCG and it has improved my quality of life beyond belief.
     
    • Like Like x 2
  9. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    Thanks @yingtong, very much appreciated...good to hear one CCG is funding!!
     
    #9 donnellysdogs, Jul 23, 2016 at 10:10 PM
    Last edited by a moderator: Jul 23, 2016
  10. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    @phdiabetic have you got any thoughts you could offer?
     
  11. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    @jfigard any help that you would be willing to contribute? I think you've been using for a year?
     
  12. phdiabetic

    phdiabetic Type 1 · Well-Known Member

    Messages:
    881
    Likes Received:
    1,626
    Trophy Points:
    158
    Hey donnellysdogs! I have been self funding the Freestyle Libre. Readers were not available for a while so I started on the sensors and mobile app Glimp, but on my latest sensor I've been using my newly bought reader. I think the Libre is really good and will continue using it, at least until the Dexcom G6 comes out. It helps me have tighter control without doing so many fingerpricks (a couple of weeks ago I did 20 fingersticks in 1 day) and I believe it is reasonably accurate. I actually did a comparison to other meters yesterday:

    Freestyle Libre sensor: 5.3
    Freestyle Optium: 4.6
    Freestyle Optium Neo: 4.2
    Accuchek Performa: 5.4
    Accuchek Mobile: 4.8

    So I believe that the Freestyle Libre is no worse than a meter in terms of accuracy. As with any meter, if you get weird numbers, you need to double check with another meter. However, minor accuracy issues are not enough to stop me using it. The trends are really useful and I like seeing what happened to my numbers during the night.

    In short, I would highly recommend the Libre, and will continue paying for it even if it is not subsidised. Let me know if you have any more questions and I hope that helped!
     
  13. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    @phdiabetic. Thanks. Did you ask for funding for Libre or a CGM.
     
  14. Hirstygirl

    Hirstygirl Type 1 · Well-Known Member

    Messages:
    110
    Likes Received:
    82
    Trophy Points:
    68
    Hiya donnellysdogs I am about to start on the minimed 640g with the Enlite sensors totally funded by CCG. Should state though I have no hypo awareness and lost my driving licence 12months ago as a result, so the pump/cgm will greatly improve my quality of life.
     
    • Like Like x 2
  15. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    Thnx @Hirstygirl.. Very much appreciated. I am so sorry you lost your licence. I almost did in 2010 due to a driving incident but I was treating my hypo and I had pulled over...currently my Consultant is still confident that I am aware of hypo's but the trouble is double trouble with high levels from food up to 15 hours after I have ate. People from years ago on here know I basal test, do everything OTT and I'm still struggling...

    I am due back on a pump on 2nd August, much against my wishes as I am still thin and this was the reason I was advised to come off it. I'm not so muscley now though. I do have some loose skin,although I wouldn't call it fat, I am still barely a size 8.

    My problem is lack of fingers to use and quantity of tests needed due to slow colonic and stomach.. Although I have awareness to treat myself the length of time for glucose and liver to react can be very long.... Ie couple weeks ago I was 4.1 and made the mistake of testing before my DSN who then wouldn't let me go until my levels were above 5 for 20 mins to drive home...so I had my normal sugar, and then she insisted I had orange juice, and then insisted on another glass of orange juice and then insisted on a peeled peach (I cannot eat skins)... Because my levels were coming up fast enough for her.... I know nowadays my levels stat low longer but it doesn't mean I rush in and over treat them.... 3 hours later my levels were 20... I could have quite easily waited and waited but health officials don't care about over treating.. Slow stomach and colon also impacts with rises for foods, and I can only eat limited foods. I have a different hospital now and CCG due to moving and they are dreadful compared to my previous CCG and Consultant. I've written all my details to the APPG and to my CCG and Consultant and Nurse. I'm not expecting miracles.. But I am hoping tat the APPG for diabetes will consider all my complaints and compliments and considerations for improving diabetic care...
     
    • Like Like x 4
  16. lizdeluz

    lizdeluz Type 1 · Well-Known Member

    Messages:
    1,304
    Likes Received:
    1,909
    Trophy Points:
    178
    I was invited to a trial by my diabetes clinic, I have been given a Libre reader and one sensor. Thereafter, it will be self-funded if I choose. I think the sensors are expensive. I'm hopeful that this system will be funded by the NHS in due course. In the meantime, I can see that I could use it on a part-time basis. I like checking the night-graph and seeing the directional arrows for blood sugar levels. In a way, it is simpler and more straightforward than finger-sticking+metre, but I can see that it may actually mean more work for me because probably I will be continuing with two systems until the Libre is available as a matter of course. When I see my consultant, I shall ask for funding.
    I hope that it is/will be available for Type 1 children because it must be a help to parents to be able to check their child's blood sugar at night without needing to wake them?
    This is new for me, but feel free to use what I say if it is of any help.
     
    • Like Like x 2
  17. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,231
    Likes Received:
    12,475
    Trophy Points:
    298
    Thanks @lizdeluz. I'm going to keep list of comments and give them to my MP at a later date.

    My hospital do the same thing with the libre. One sensor for two weeks, see if you like and then you can self fund. My nurses however didn't even know they had to input a code to set it up for 0.5 or 1 unit injections and to allow the user to input their carbs and insulin injections. I had to tell them!! They had set up Groups of patients with only 1/2,capabilities! Ggggrrrrr.
     
  18. Hirstygirl

    Hirstygirl Type 1 · Well-Known Member

    Messages:
    110
    Likes Received:
    82
    Trophy Points:
    68
    @donnellysdogs hope all goes well for you I don't have the lack of body fat issue, in fact quite the opposite ha ha, so can't comment on your experience. I would like to say though that I am still hopeful I will get my licence back, once on pump with low threshold suspend I will know when my blood sugar levels are low so fingers crossed. I know baby steps but any movement is a plus xx
     
  19. phdiabetic

    phdiabetic Type 1 · Well-Known Member

    Messages:
    881
    Likes Received:
    1,626
    Trophy Points:
    158
    No I didn't, it's not really available for me.
     
  20. Robinredbreast

    Robinredbreast Type 1 · Oracle

    Messages:
    18,447
    Likes Received:
    27,589
    Trophy Points:
    298
    I recently ,asked my diabetes dr about the funding for a CGM and he said, it could or would, be on loan for a couple of weeks to patients with hypo unawareness and high BS and I don't fit into either, so nothing for me, my last Hba1c was 7.0.
     
  • 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