Question to all CGM users

[Unicornz]

Hi everyone

I've been on the pump since March now and I've been able to borrow a CGM from the hospital twice to help me sort out misbehaving levels. Since about two months now I keep having one of two hypos every DAY and I just couldn't figure out where the problem lies. The thing is - whenever the week is up I am really reluctant to give it back because it's so incredibly useful!

I've basically been told by my DSN that they aren't funded - which I can understand seeing as how many problems people have obtaining a pump in the first place - and if I wanted one I'd have to self fund it. I really have two questions, is there anyone who DID manage to get funding from the NHS, and if so, how? I think I know a few people who did get it because they have severe hypo unawareness so I can understand that in that case it's needed, but are there any other situations when they might consider it?

And secondly, is there anyone on here who is self-funding a CGM? I'd love to know how people do it and what the costs are like. I don't think that if I bought one myself I'd wear it 24/7 - I'd probably like to wear it at least a week out of every month to make sure things were going well.

 

[Cheryl]

Hi there,

I am waiting for a Medtronic Veo to be ordered for me by my pump DSN. One of the reasons for having this pump is teh ability to use CGM. I discussed this with the consultant back in August who agreed that it would be very useful for me, but didn't expect that I could get funding.

The DSN told me recently that there are only 2 people at my clinic who have CGM funded by the NHS (200 pumps users apparently). One is completely hypo unaware & has a hypo awareness dog, but didn't like the GCM & doesn't use it. The other struggled to get her Hba1c below 8.5 even with the pump and is now pregnant, but by using CGM, it has come down drastically. They basically told me to not even bother. Even with 40 hypos a month (down from 60, so I'm making progress), my hypos are mild & I knwo about them soon enough, they won't consider it. I guess that they also know that I am in full time work & paid a reasonable salary, no kids etc so can probably afford to fund myself to a certain extent.

So I have done my research. The initial set up for the Veo (transmitter plus 4 sensors) costs £687 (£585 if ordered at the same time as the pump). This is their new Enlite sensor which is apparently 69% smaller than their old sensors.

The transmitters are in warranty for a year, but Medtronic's sales rep tells me that (quote) " we have experience of them lasting much longer, i.e. in my last job the transmitters we got three years ago are still in good use".

Additional sensors cost £275 for 5 or £525 for 10. Each can be worn for 6 days, though apparently some people get 7 days out of them.

My plan is to blitz it with the CGM for a month or three & see if I can sort out my hypos while keeping my highs (also a problem) within reason.

Hope this helps.

 

[bonerp]

I've currently got a funding request in. I have used the hospitals own closed CGMS machine for a week and am now experiencing how useful/less the combi is from accu-chek as I currently use only the spirit pump.

It went to the PCT recently and they asked for further information.

My arguement is retinopathy and uncontrolled swings. I think it would provide the missing link so I can see what happens and adjust accordingly.

Remains to be seen whether I am funded - I am certainly a guinea pig in this area. Will update on results being announced.

My issue is there seems to be no middle ground for part funding. Its also taken a year so far to get this far! No wonder the NHS has backlogs is it!!

 

[Unicornz]

I've currently got a funding request in. I have used the hospitals own closed CGMS machine for a week and am now experiencing how useful/less the combi is from accu-chek as I currently use only the spirit pump.

It went to the PCT recently and they asked for further information.

My arguement is retinopathy and uncontrolled swings. I think it would provide the missing link so I can see what happens and adjust accordingly.

Remains to be seen whether I am funded - I am certainly a guinea pig in this area. Will update on results being announced.

My issue is there seems to be no middle ground for part funding. Its also taken a year so far to get this far! No wonder the NHS has backlogs is it!!

God I'd love there to be part funding, that would make things so much easier already! I guess for me, I haven't been on the pump long enough yet to see whether it would really add something to my control or whether it would just be 'nice to have'. I'm currently experiencing a lot of problems with hypos which I'm not getting a lot of support with from the hospital; I have at least 1 or 2 hypos every day and I'm starting to lose my awareness.

Either way, good luck with your request I hope you can get funding