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Cgm funded or not

Layah2013

Layah2013

Well-Known Member
Messages
60
Type of diabetes
Type 1
Hi has does anybody on here know of anyone that has got funding for a cgm and if so what area are they in please, im looking into one for my daughter but didnt realise it would be that much, her dsn said if i can find another hospital that has funded it they can contact them to get the paperwork for this as she said they currently cant get any funding, !!

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Layah2013 said:
Hi has does anybody on here know of anyone that has got funding for a cgm and if so what area are they in please, im looking into one for my daughter but didnt realise it would be that much, her dsn said if i can find another hospital that has funded it they can contact them to get the paperwork for this as she said they currently cant get any funding, !!

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Layah, I'd join the T1-CGM facebook group I think. I know they have been keeping track of where people have managed to obtain CGM on the NHS.

I think it's safe to say that realistically, it's very hard, and unless your daughter is suffering a lot of hypos and she and you are unable to detect them, your task is not going to be easy.

What do you need the CGM for? There is an alternative in the Abbott Libre which would cost you £100 per month if you already have an Android phone with NFC, but it doesn't provide alarming, so if that's what you need it wouldn't help.
 
To get funding you need your daughters consultant to write to the CCG you are under and request individual funding.
My CCG refused to fund mine to looked around for charity/benevolent funding, which I succeeded in securing.
 
I need as shes having hypos every night and im testing evrry 2 hours for the last 4 weeks im so shattered but im scared to sleep in case i miss my alarm to test her as she doent wake up herself, she has had her basal rates lowered everytime and is on the lowest rate but still no luck, her dsn said if i can find somebody thst has had funding and find which hospital it is she said she can get intouch with them and get the paperwork that they used. We are under chesterfield royal hospital,

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CarbsRok said:
To get funding you need your daughters consultant to write to the CCG you are under and request individual funding.
My CCG refused to fund mine to looked around for charity/benevolent funding, which I succeeded in securing.
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Hi thanks for the reply do you know which charity you used please and what area are you in if you dont mind me asking, we are chesterfield royal hospital

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Sorry, my post makes more sense over here on this thread...

@Layah2013 has your consultant confirmed that they will support a funding request to the CCG? But they just don't know how to complete the paperwork? So your consultant agrees there is a clinical need?

Please contact INPUT diabetes for their advice and assistance on the next steps, what paperwork needs completing, how best to make your case to the CCG etc - http://www.inputdiabetes.org.uk - they are a charity assisting people in accessing diabetic technology via the NHS so are likely to have access to successful applications, they might even have experience of making requests to your CCG.
 
catapillar said:
Sorry, my post makes more sense over here on this thread...

@Layah2013 has your consultant confirmed that they will support a funding request to the CCG? But they just don't know how to complete the paperwork? So your consultant agrees there is a clinical need?

Please contact INPUT diabetes for their advice and assistance on the next steps, what paperwork needs completing, how best to make your case to the CCG etc - http://www.inputdiabetes.org.uk - they are a charity assisting people in accessing diabetic technology via the NHS so are likely to have access to successful applications, they might even have experience of making requests to your CCG.
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Her consultant said that she would greagly benefit fom one of these but the criteria that our hospital needs to be able to sdnd off for the nhs to fund is that she needs to be going unconsious when she hypos, but i dont leave her that long for that to happen i test her every 2 hours and treat the hypo while its around 3.0 or 2.5 at the lowest, but this happens every night, he said if i can find a hospital that has funded it on the basis that they have night hypos but not going unconcious then he can apply to that hospital and use the same paper work. Im not happy to leave her to the point that she could not wake up, so i will just have to keep trying to get funding while trying to raise money aswell

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I would still strongly recommend you contact input for advice on how to obtain NHS funding - it isn't easy and it may not be possible, but perhaps the hospital might be persuaded the criteria they are using before getting to the stage of even applying for funding is slightly too narrow.

If you are planning on trying to get charitable funding, any charity is very likely to want to see a failed CCG funding application first - they are going to want to know that it can't be funded by the public sector before considering you for third sector funding.

Input are helpful, have a look on their websit and send them an email with the same info you have put on the forum. Helping people obtain NHS funding is what they do, so they are probably a good place to start.
 
Layah2013 said:
Her consultant said that she would greagly benefit fom one of these but the criteria that our hospital needs to be able to sdnd off for the nhs to fund is that she needs to be going unconsious when she hypos, but i dont leave her that long for that to happen i test her every 2 hours and treat the hypo while its around 3.0 or 2.5 at the lowest, but this happens every night,
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Your consultant is wrong about being unconscious.
The forms to fill in for individual funding can be downloaded from your CCG website (well mine can) If not then ring the CCG and ask for the forms to be sent to you and your daughters consultant.

Most importantly besides the danger to your daughter there is a thing called quality of life. Which includes your quality not just your daughters. So write a letter telling them exactly how this affects you as well as your daughter.

Have you also applied for DLA for your daughter? If not do so and the money will help towards the cost of the CGM/sensors.
 
CarbsRok said:
Your consultant is wrong about being unconscious.
The forms to fill in for individual funding can be downloaded from your CCG website (well mine can) If not then ring the CCG and ask for the forms to be sent to you and your daughters consultant.

Most importantly besides the danger to your daughter there is a thing called quality of life. Which includes your quality not just your daughters. So write a letter telling them exactly how this affects you as well as your daughter.

Have you also applied for DLA for your daughter? If not do so and the money will help towards the cost of the CGM/sensors.
Click to expand...
Thankyou for your reply, my consultant said he wasnt going to try to send the paperwork out as the criteria she does not fit it, as she is not going unconsious, i couldnt get any further with him.. but if theres a away i can get the forms and them present them to him then ill do that, how do i get to the ccg website, sorry ive not heard of this so not sure what to do.. as for the dla i have sent it off but had nothing back yet but thst would be a great help towards the sensors ..

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Hi @ Layah2013

Try to get yr daughter's basal level adjusted overnight so that she doesn't go hypo. The basal level usually needs to be adjusted about 2hrs before the low or high bg level occurs. If you have the Think Like A Pancreas book by Scheiner, turn to page 142 to see the basal rate adjustment guide. My guess is that daughter's basal overnight is somewhere between 0.000 to 0.350 per hour so depending on how low bg is going, you will probably need to look at either the middle or bottom row in the table. Once you get the basal level okish, you'll be able to relax a bit more.
I tend to use a bg target of 6mmol and just adjust the basal to get that bg level. If you don't have the book, just google ....G Scheiner Basal Rate Adjustment Guide and print out the table.

you'll get there so keep at it.
 
Layah2013 said:
Thankyou for your reply, my consultant said he wasnt going to try to send the paperwork out as the criteria she does not fit it, as she is not going unconsious, i couldnt get any further with him.. but if theres a away i can get the forms and them present them to him then ill do that, how do i get to the ccg website, sorry ive not heard of this so not sure what to do.. as for the dla i have sent it off but had nothing back yet but thst would be a great help towards the sensors ..

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All you need to do is put in your search engine CCG (where you live). Your consultant is talking a load of twaddle there is nothing to stop anyone applying for sensors as to whether you get them is another matter.
 
iHs said:
Hi @ Layah2013

Try to get yr daughter's basal level adjusted overnight so that she doesn't go hypo. The basal level usually needs to be adjusted about 2hrs before the low or high bg level occurs. If you have the Think Like A Pancreas book by Scheiner, turn to page 142 to see the basal rate adjustment guide. My guess is that daughter's basal overnight is somewhere between 0.000 to 0.350 per hour so depending on how low bg is going, you will probably need to look at either the middle or bottom row in the table. Once you get the basal level okish, you'll be able to relax a bit more.
I tend to use a bg target of 6mmol and just adjust the basal to get that bg level. If you don't have the book, just google ....G Scheiner Basal Rate Adjustment Guide and print out the table.

you'll get there so keep at it.
Click to expand...
Her basal rates are getting changed every day and with no luck she is now on 0.03 each hour through the night she was 0.05 each hour last night but she still went hypo

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Ive been told its the dexcom meter that she neeeds as it alarms you when she is high or low, the dex com is the pump with the cgm built in i think, they av said she can lend a cgm to wear for 2 weeks to see whats happening at night but it doesnt alarm when low, so her dsn said i will need to self fund the dexcom which is for her needs ...

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I think you are getting confused Layah. The pump with the Dexcom receiver is called the Animas Vibe. Your daughter has the Insight pump.
So you need a Dexcom transmitter and receiver plus the sensors. This is a stand alone device which has nothing to do with the pump your daughter is on or any other pump.
I gave you the link to the Dexcom site yesterday with the information on it. The info also showed that you can save money by using a smart phone as a receiver so this saves money if you have a compatible phone.

I would suggest you sit down and do some research so you understand what you are asking for otherwise you wont get any funding at all.
 
Google Circles of Blue to find out about the phone option

Also, try reducing the basals a bit more after eve meal to make bg go up a bit higher or simply eat some carb to make bg increase. It takes time and a lot of bg testing to get the settings adjusted so interupted sleep but basal rate adjusting with bg testing can be done for 2 days at a time, have a break .....eat half a kit kat to prevent any lows that might happen and resume the testing again when convenient.
 
Just a footnote - it seems that Dexcom are no longer selling the G5 that works with the mobile phone as a standalone product. They will now only sell it with the Receiver.
 
[QUOB's. .."tim2000s, post: 1208958, member: 30007"]Just a footnote - it seems that Dexcom are no longer selling the G5 that works with the mobile phone as a standalone product. They will now only sell it with the Receiver.[/QUOTE]
The b's........

Does this mean that the bluetooth function will no longer be?
 
No, it's there, but if you buy the G5 transmitter for the first time it has to include a receiver.


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tim2000s said:
No, it's there, but if you buy the G5 transmitter for the first time it has to include a receiver.


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Hi Tim can you point me the info on their website please? I have looked and all I can see is the G5 info stating compatible phone or receiver required.
 
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