CGM on the NHS?

[tircoed]

Hi i have just gone onto a insulin pump and find that i am having to check my bloods more often, i have been looking at the Dexcom CGM can you tell me if you can get the CGM on the NHS or do you have to pay.Thanks

 

[noblehead]

Have a read of the following from INPUT which discussed CGM and NHS funding:

http://www.inputdiabetes.org.uk/cgm/cgm-costs/

 

[catapillar]

Hi i have just gone onto a insulin pump and find that i am having to check my bloods more often, i have been looking at the Dexcom CGM can you tell me if you can get the CGM on the NHS or do you have to pay.Thanks

It's usually a bit of a battle to get funding for a CGM on the NHS. Is there any clinical reason you need a CGM other than your having to test more often? Do you have problems recognising hypos? Have you had any severe hypos? Have you got a anxiety /fear of hypos?

 

[Rachel16008]

I realise I am bumping an older thread, but I wonder if anyone has had any success getting funding for CGM on the NHS? My son is 11 and has had T1 for 5 years. For the past year he hasn't slept well at all, often still awake at 2-3 am. He has had terrible "meltdowns" and regularly refuses school (having to be physically dragged there) even though he is bright & doesn't struggle or have any problems at school at all. Both us & school have been at a loss to explain this behaviour, until the last week, when he finally broke down & admitted he was terrified to go to sleep and was afraid he wouldn't wake up again if his sugars went low or high in the night. He has had a pump for 2.5 years & manages well with pretty well controlled levels so wouldn't meet criteria for CGM for hypos, however, I wonder if the mental health angle would have any mileage. He has a CGM for 2 weeks and it was started on Sunday. He has slept beautifully for 2 nights & says he feels "safe" because it will warn him if he is going low or high. We are devastated by the change in our happy lad and very concerned that his mental health is affecting his schooling as he is often so exhausted he simply will no go. He has met with the phsycologist from the Diabetic team but he simply clams up & says that everything is fine.
If anyone can offer any advice I would be truly grateful. The effects of this are taking a tremendous toll on all of us :0((

 

[tircoed]

Hi i was the person who was asking the same question. I have big problems with Hypos too i get very nervous and run my sugars high so i dont hypo. I spoke to the consultant on Monday and they have offered to put me on the Medtronic 640 g which is a pump and a CGM at the moment im on a Omnipod and they will fund it, you need to talk to the Diabetic Nurse or Consultant and tell them all about what is happening with your son. Good Luck

 

[tircoed]

May be you could get the school involved and they can write to the hospital too

 

[Rachel16008]

May be you could get the school involved and they can write to the hospital too

Thanks so much for your replies & very glad for you that your Diabetes team are funding it for you. It seems to be a bit of a lottery. I will definitely talk to the team & get the phsycologist & the school involved. Hopefully that will be the sort of pressure required for funding. I so want him to stop being anxious, it's horrible to see him so distressed. How are you getting on with your CGM now?

 

[tircoed]

I have a Dexcom at the moment but they will not fund the Dexcom and the Omnipod so i am changing to a Medtronic 640g which is pump and a CGM it also has the SmartGuard which is based on your sensor glucose values, SmartGuard can predict when you are approaching low glucose levels 30 minutes in advance and automatically stop insulin delivery When your glucose levels recover, SmartGuard will automatically resume insulin delivery, I think is great because hopefully it will also reduce hypos, I love having the CGM its amazing not being so anxious every day and night and getting warnings when I go Low and High, What pump is your son using and what CGM is he using.

 

[Rachel16008]

I have a Dexcom at the moment but they will not fund the Dexcom and the Omnipod so i am changing to a Medtronic 640g which is pump and a CGM it also has the SmartGuard which is based on your sensor glucose values, SmartGuard can predict when you are approaching low glucose levels 30 minutes in advance and automatically stop insulin delivery When your glucose levels recover, SmartGuard will automatically resume insulin delivery, I think is great because hopefully it will also reduce hypos, I love having the CGM its amazing not being so anxious every day and night and getting warnings when I go Low and High, What pump is your son using and what CGM is he using.

That sounds like a great plan. He is using a Medtronic pump which has been a real freedom for him. The CGM is a Medtronic Mini Link real time. It allows us to set alarms & protocols for highs & lows & the pump will alarm and/or suspend if necessary. It's gone a long way to allay his fears as we have had a few pump failures overnight & this scares him & also I think embarrasses him as he is likely to wet the bed if very high, which he would never do!

Today has been a bad day with 3 hypos before lunch & 3 later in the afternoon Hopefully the CGM data will help the DSN team adjust his pump settings. I wish you all the luck in the world with your new set up. We're hoping for an Omnipod at next pump change (1.5 yrs) but if CGM isn't as good with that, maybe we'll need to think again?

 

[tircoed]

I have an 11 year old and cant imagine what you are going through,I hope you get the CGM on the NHS I will keep everything crossed.

 

[Grumpy ole thing]

Have you tried an Individual Funding Request (IFR)? Your GP would need to write to your Clinical Commissioning Group to explain why it would be beneficial, you could highlight the benefits to quality of life?

 

[donnellysdogs]

You do need to ask consultant for an individual or exceptional funding request to be made.

Also you can under the freedom of info act request details from your CCG for how many patients they have funded for a cgm... this would give you an idea as to how likely your son would be to get one funded.

If your CCG (I know of one that does fund without special requests) if the Consultant thinks a patient needs one.

My CCG has given me funding for 3 months (last Sept) but I am still waiting for the release of the Guardian sensor. Mine had to be done under exceptional funding request and our CCG does not fund long term. Every 3 months my consultant and me and other consuktants will have to write begging letters.

If your CCG restricts funding it should have details on the web that you can find out.. my ccg had a "position statement for cgm" on websites when I googled their name and polucies for cgm.

 

[Grumpy ole thing]

Hiya, for info this might help https://www.england.nhs.uk/commissi.../12/2015/06/individl-fund-reqts-info-pats.pdf or you could check the website for your CCG's internet site which may offer more guidance, as different CCG's have different policies (Mr Bing and Mr google might help there). Good luck x

 

[tircoed]

Thanks for the information, it looks like my NHS board will pay for a CGM so really happy