CGM / Libre funding- who has it?

[Robinredbreast]

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.

I am in Hampshire, a good post dd

 

[lizdeluz]

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.

Same here, my Libre is not set up for 0.5 units. I will see if I can get that sorted today.

 

[tim2000s]

When I got the 640G I asked about access to the Enlite CGM alongside it. I was told that due to my hypo awareness and good hba1c, there was no chance of funding.

 

[AndBreathe]

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...

DD - Sorry this is off-topic, but have you tried using alternative site for singer prick testing? Inner fore arms or the like?

 

[azure]

When I got the 640G I asked about access to the Enlite CGM alongside it. I was told that due to my hypo awareness and good hba1c, there was no chance of funding.

That's pretty much what I was told when I got my Vibe - along with a wry laugh from the DSN I asked. They said it was almost impossible to get funding in my area and presented it as a very rare thing (for my area, at least)

 

[Hirstygirl]

That's pretty much what I was told when I got my Vibe - along with a wry laugh from the DSN I asked. They said it was almost impossible to get funding in my area and presented it as a very rare thing (for my area, at least)

I think it is a very rare thing to obtain funding for cgm @azure. I'm so thankful to my team for pushing my case forward and getting the CCG to approve it, I do know how lucky I am .

Edited to add I'm in Warwickshire incase you need to know this donnellysdogs

 

[donnellysdogs]

Same here, my Libre is not set up for 0.5 units. I will see if I can get that sorted today.

Looks like a few nurses don't know how to set up the readers correctly..

Unfortunately it only allows 4 time slots.. For bolus and carb ratio's etc. Wheras I have 6..

You need to have the code otherwise if you change ratio's etc you can't change the settings again!!

It allows you to enter times ate, insulin etc... I bet Freestyle wouldn't want nurses giving out machines only 1/2 set up... And its only 1/2 useable by the patient too!!

Gggrrrrr...xx

 

[donnellysdogs]

I think it is a very rare thing to obtain funding for cgm @azure. I'm so thankful to my team for pushing my case forward and getting the CCG to approve it, I do know how lucky I am .

Edited to add I'm in Warwickshire incase you need to know this donnellysdogs

Thank you @Hirstygirl.. Pity you had to lose licence first before getting.

I have now written to the Chair of the APPG For Diabetes and to my MP in Peterborough and will let you all know their responses.

I have asked them to get NICE to contact real users of CGM's and Libres to get accurate feed back on them. I hD a CGM previously and got a loaned Libre for a while..

I also copied details from MP for Leicestershire asking questions on 13 June ref CGM and the response back...

This APPG is a time for us diabetics to voice opinions. I have given praise to my previous 2 hospitals giving me pump and CGM etc but questioned why if one Consultant from one CCG thinks a CGM is necessary why when I have had to move because of cancer and ill health that this longterm funding should be taken away..

I have also mentioned that persons with long term disabilities cannot suddenly get better after 3 months.. Ie I can never blood test on my left hand again..and my consultant has said my colon/stomach will never improve.. So in my opinion my CCG are discrimatong against persons with long term disabilities...

Thanks everybody for comments so far, I would appreciate more, as it is my intention to take this much further!! Nicely of course!!

 

[donnellysdogs]

Trying to improve things for all of us.. Not just me!! Lol

 

[catapillar]

I have no hypo awareness. The number of severe nocturnal hypos I have had is far higher than anyone would want. Because of this, my consultant advises I'm at high risk of dead in bed syndrome & there is a clinical need for CGM. However, she also advises she has patients worse off than me (who are unable to work, require care and multiple ambulance attendances due to hypos) who have been denied funding so there would be no point putting in a funding request for me.

This is covered in my own APPG submission. But happy to be used in compilation.

 

[iHs]

Until the companies that produce cgm technology, lower their prices to make it a bit more comparable with bg monitoring, it's more or less 'whistle to the wind ' as very few CCGS will fund cgm even when there is a dire clinical need. It i

 

[donnellysdogs]

This is why us people need to write and state our cases.
It costs £1500 for an unplanned emergency. I've had 2 this past 9 months due to stomach and 1 non a&e but paramedics due to hypo but thanks to my stomach...

If we fo nothing then we can only blame ourselves...

 

[Russem]

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.

I do not have any hypo awareness and my consultant has been to the board twice to ask for funding for a CGM for me but have been refused both times. I have had a trial of a CGM for 1 week and it greatly helped me as I was getting warnings when my blood was dropping and I was able to do something about it before it became serious. I have had paramedics out many times in the past as I have went into a Hypo coma. I live with this worry every day as does my husband who doesn't like leaving me on my own at home in case I have a serious hypo. This isn't a good life to live but I have been hitting my head of a brick wall trying to get help with this. I was given a pump 1 year ago which helped reduce the hypo's but I think like all Diabetics they will experience hypo's on a regular basis for many reasons.

I was asked by my CPN to write down saying why I thin I need a CGM and how having no Hypo awareness is affecting my daily life. I did this was was told by both the CPN and the Consultant that it made very good reading and it would be taken to the board to consider but as mentioned this has go me nowhere.

I am type 1 Diabetic, have been for 40 years. I don't know what it will take before they take notice that some people genuinely need CGM's as a life saver.

 

[catapillar]

I do not have any hypo awareness and my consultant has been to the board twice to ask for funding for a CGM for me but have been refused both times.

Do you mean the health board? Are you in Wales? Do you get any reasons for the refusal?

Have you been in touch with INPUT diabetes - were they able to offer any advice on next steps?

 

[Russem]

Do you mean the health board? Are you in Wales? Do you get any reasons for the refusal?

Have you been in touch with INPUT diabetes - were they able to offer any advice on next steps?

Hi Catapillar, yes I do mean the Health Board, I live in Scotland. The only reason I received is "there is no funding available". I did write to the Secretary of State for Health and got a reply that said I should discuss this again with the Consultant. This is the reply I received :

I was sorry to hear of the issues you have been having in controlling your diabetes and appreciate this must be a very stressful time for you. We are aware that people value greatly the benefit of Continuous Glucose Monitoring (CGM) devices in managing their diabetes, particularly in those with additional needs. When discussing treatment plans with patients, we expect clinicians to take into consideration the recommendations set out in relevant clinical guidelines and standards, including those in Scottish Intercollegiate Guidelines Network (SIGN) Guideline 116 on the management of diabetes. These guidelines recommend that CGM devices may be useful only for a small number of people with diabetes who would clinically benefit from their use, particularly as an aid to improving glycaemic control in those who have very limited hypo/hyperglycaemic awareness. I would therefore encourage you to discuss your concerns with your glycaemic control, particularly your lack of hypoglycaemic awareness, with the team responsible for your care in the first instance, as they will be best placed to provide specific advice and support based on your personal circumstances.

 

[catapillar]

@Russem well that's deeply unsatisfactory. It sounds like your consultant has determined that you need a CGM so the SoS letter doesn't really address the issue of "there is no money". Of course, it could well be that there simply is no money, but if that's the case, if I were in your position, I'd want that in black & white as the reason.

I have no idea how funding decisions work in Scotland. INPUT are super helpful for this sort of thing in England & Wales. They have a sister charity in Scotland - http://www.ipag.co.uk/nice-guidelines-funding-continuous-glucose-monitoring/ - might be worth getting in touch to see if they can suggest anything.

 

[Russem]

@Russem well that's deeply unsatisfactory. It sounds like your consultant has determined that you need a CGM so the SoS letter doesn't really address the issue of "there is no money". Of course, it could well be that there simply is no money, but if that's the case, if I were in your position, I'd want that in black & white as the reason.

I have no idea how funding decisions work in Scotland. INPUT are super helpful for this sort of thing in England & Wales. They have a sister charity in Scotland - http://www.ipag.co.uk/nice-guidelines-funding-continuous-glucose-monitoring/ - might be worth getting in touch to see if they can suggest anything.

Thanks @catapillar I will have a look at INPUT's sister charity in Scotland. Every time I ask the clinic the reason for the Health Board turning me down for funding their reply is alway "there is no funding". Once consultant even said that I am lucky that I got funding for my pump!

 

[AndBreathe]

Looks like a few nurses don't know how to set up the readers correctly..

Unfortunately it only allows 4 time slots.. For bolus and carb ratio's etc. Wheras I have 6..

You need to have the code otherwise if you change ratio's etc you can't change the settings again!!

It allows you to enter times ate, insulin etc... I bet Freestyle wouldn't want nurses giving out machines only 1/2 set up... And its only 1/2 useable by the patient too!!

Gggrrrrr...xx

DD - I'm not entirely clear here. Are you saying the patient doesn't have access to the unlocking code for "Professional Settings", rendering things 50% useful, or something else?

If it's the unlock setting for the Professional Settings, a number of folks have that. I think @tim2000s might have it. I looked in there, but there's nothing currently relevant to my condition in there, so didn't bother to record the code.

If it's something else, apologies for going a bit left-field.

 

[jakay42]

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.

I was newly diagnosed about 4 weeks ago and am currently trying the Libra for the next three months curtesy of the NHS. I have still been using the Accu -Chek (AC) as normal carb counting and all that as I have to hand the Libra back after the trial period. First thing it is very very easy to use and painless to apply to the upper arm. Change the sensor every 14 days and so far it’s not fallen off in the shower and I hardly notice I have it attached. However it is early days in my use and some anomalies have already appeared when compared to the AC readings. Bearing in mind it may take a day or two to get used to the hosts physical attributes the readings so far (and it is only a few days) appear to err on the low side compared to the AC. A 4.3 before a run on the AC prompted a plum and 50mls of Lucozade. 10 minutes later it was up to 6.0. The Libra was 3.2 and ten minutes later 3.7. If I was using the Libra as the primary reader I would not have gone out or I would have had a lot more carbs as the Libra was indicating Hypo which was not the case. However a delay in the readings is anticipated as it is not instant like using a ‘pricker’. Hopefully in the coming weeks I will got a ‘feel’ for the Libra and I must admit some reading have been the same as the AC or very close. However the Libra too erratic at this time for me to be fully confident about the accuracy although I am confident in time the Libra will prove very useful and no doubt I will put it through its paces in the next three months.

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.

I was newly diagnosed about 6 weeks ago and am currently trying the Libra for the next three months curtesy of the NHS in Scotland . I have still been using the Accu -Chek (AC) as normal carb counting and all that as I have to hand the Libra back after the trial period. First thing it is very very easy to use and painless to apply to the upper arm. Change the sensor every 14 days and so far it’s not fallen off in the shower and I hardly notice I have it attached. However it is early days in my use and some anomalies have already appeared when compared to the AC readings. Bearing The Libra is too erratic at this time for me to be fully confident about the accuracy but the last two weeks have not been too bad especially when exercising. Its not Jock proof though as dextrose powder can get into the workings very easily and have to try and get the reader replaced. Its still working away fine just need to press the button more firmly.

I agree for the details of my experience to be sent to the APPG.

Jaykay

 

[donnellysdogs]

DD - I'm not entirely clear here. Are you saying the patient doesn't have access to the unlocking code for "Professional Settings", rendering things 50% useful, or something else?

If it's the unlock setting for the Professional Settings, a number of folks have that. I think @tim2000s might have it. I looked in there, but there's nothing currently relevant to my condition in there, so didn't bother to record the code.

If it's something else, apologies for going a bit left-field.

On the reader to use it "properly" ie type in qty of carbs, qty of insulin etc you need the nurse to go in with their code to set it up..or to unlock the reader. My nurses didn't even know about it...so had been setting other patients up in group sessions for a free two week trial without even giving them the "tools" to see the true functionality if with a pen and only 4 time blocks of ratio's. My nurse had rep in at the time and srote the code down for me to go home and change things myself...