CGM / Libre funding- who has it?

phoenix

Expert
Messages
5,671
Type of diabetes
Type 1
Treatment type
Pump
As some members know, I live in France. This week I got home from 3 months in the UK ( we are preparing to move back and now have an apartment there) to find my diabetologist had phoned and asked me to collect a new prescription.
Its for a Libre and 2 capteurs. She knows I have one but found it too expensive to use all the time.
I haven't seen her yet but have found about it on the internet, since last month they can be prescribed and paid for by the health care authority at 100%
https://www.federationdesdiabetique...ibre-sera-rembourse-a-partir-du-1er-juin-2017

They are available for T1 or T2, for adults or children aged more than 4 months who use 3+ injections a day or a pump and test 3+ times a day.
They reimburse the cost of a reader and 26 capteurs a year.The manufacturer (Abbott) guarantees replacement for faulty readers or capteurs within three days.
The first prescription must be by a specialist (diabetologist or paediatrician specialising in diabetes) The Regional health authority has to provide education in it's use
There is a trial of 1-3months to make sure the person can use it and doesn't have reactions to it.
The device replaces prescriptions for testing strips but 100 a year will still be allowed.
.

So will put in my prescription and see how things go (but I'm already worried about keeping my pump when we eventually return to the UK, let alone a libre!)
 
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catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
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Insulin
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

It's not your GP that makes the request to the CCG. It's your diabetic consultant. Although the diabetic team says CCG funding is unlikely has a request for funding actually been made? It's only when a request is made that you actually get your answer from the CCG, and an opportunity to push back if it's not granted. If your consultant is reluctant to make a funding request it's worth contacting input diabetes as they are willing to assist with making funding requests - http://www.inputdiabetes.org.uk

I went to a talk by the charity that provides medical detection dogs a couple of months ago, I think they said it could be 3 + years from getting on their list to actually getting a dog - https://www.medicaldetectiondogs.org.uk
 

donnellysdogs

Master
Messages
13,233
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People that can't listen to other people's opinions.
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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.

The criteria for each ccg is normally listed as the "position statement". Yes, every CCG that limits CGM will have set up their own "position statement" - but generally the same.

The consultants are actually limited in how many people they can put forward for exceptional/individual funding.

I think undee NICE guidelines it stares GPs can put in for it but I havent heard of a GP doing this for sensors. Most GPs dont even know what sensors are!

I've seen a copy of the reports that have to be completed by medics on our behalf by my CCG. They really do have to state the ins and outs of a ducks ****. Goodness knows how long it takes to complete these forms. I'm sure my medics do not have enough knowledge of my day to day struggles.
 

donnellysdogs

Master
Messages
13,233
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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

I think you would be wise to ask and find out for yourself whether your CCG have a position statement for the funding of CGM's.

As said, some CCGs publish on internet and can be googled. Some you have to either go online to hospital and there is a link to their freedom of information officer on all hospital websites... so you can get this or phone them up.

I suspect a hypo alert dog being "funded" by you effectively could be an easier option for them.

I am just up for continuation funding and keep getting told it will be refused. However, I think a lot depends upon the way consuktants and diabetes educators write the information out and how much they really understand peoples struggles.
 

TheBigNewt

Well-Known Member
Messages
1,167
Type of diabetes
Type 1
Treatment type
Insulin
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
Training a diabetic assistance dog costs at least 1,000 times CGM for a year or 2. And they don't pay what you pay for the sensors either. Whoever is making the decisions over there it would take 3 of to make a halfwit. When it comes to NHS Newt is not impressed!
 
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ringi

Well-Known Member
Messages
3,365
Type of diabetes
Type 2
I expect the NHS does not pay any of the costs of diabetic assistance dogs.......
 

Trish_D

Newbie
Messages
1
My son has T1 and is on the autistic spectrum. We currently pay for his libre testing as even with the clinical psychologist saying that he needs to have the meter to help him with monitoring and coping with his diabetes, our NHS Trust will not fund it. The difference in his ability to manage his highs and lows (he doesn't notice these himself, we do as his autistic traits become more pronounced) is amazing. Also by having his diabetes more under control means he is more able to cope with his autism and life in general.
Also currently fighting to get a pump as he is all over the place complete with hypos during the night, then being very high in the morning.. But that has taken 6months of discussion already and they are still not convinced it will benefit him.
 
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Al_P

Member
Messages
6
Type of diabetes
Type 2
Treatment type
Insulin
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.
Hi