CGM / Libre funding- who has it?

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.

CarbsRok said:

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.

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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..

@CarbsRok can I ask if you have found your CGM a help in controlling levels and your wellbeing please?

Anybody else please thats willing to comment on their experinces of CGM/ libre use and also funding?

Thanks Carbsrok...

yingtong said:

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.

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Thanks @yingtong, very much appreciated...good to hear one CCG is funding!!

@phdiabetic have you got any thoughts you could offer?

@jfigard any help that you would be willing to contribute? I think you've been using for a year?

@phdiabetic. Thanks. Did you ask for funding for Libre or a CGM.

Hirstygirl said:

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.

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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...

lizdeluz said:

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.

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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.