Pump funding continuation

Shreddy_

Newbie
Messages
4
Type of diabetes
Type 1
Hi, anyone else experiencing CCG refusals to continue pump funding? Am guessing to reduce spend in one area to cover the increased healthcare costs over the last year due to covid. I’ve been on a pump for around 12 years now, originally going on it to reduce unpredictable hypos and achieve better basal control. As a result my hba1c has increased slightly - which a good thing in this instance- but the CCG are withdrawing funding now as my control has worsened from baseline. Medtronic consumable supplies are not cheap either so private funding would be a real stretch. Anyone found a way around this?
Btw - am in London. Thx
 

DunePlodder

Well-Known Member
Messages
861
Type of diabetes
Type 1
Treatment type
Insulin
That's awful. I trust you will fight this? What is your consultant saying?
 

Maco

Well-Known Member
Messages
278
Type of diabetes
Type 1
Sounds like they haven’t taken into account the reason for the raise in your A1C. Problem just looked at your records saw an increase & instantly thought there’s one we can cut from the books. They’ve just seen it as the pump hasn’t helped and actually given you more poor control.

I had something similar with Libre a few year back, my a1c went from 83 to 52 after the first 3 month trial. I then had some troubles with hypo awareness and on my next check up my a1c has started to raise again. Instantly got Libre taken off me.
 

CathytheChef

Active Member
Messages
33
That's dreadful :mad: there must be a formal appeal process where you can argue your case. I'd argue that you've been established on this treatment for 12 years - surely they can't just stop it? An appeal should listen to your reasons for increasing your A1c rather than just looking at a basic metric. I'd also point out that you've done everything they've told you to - you can't magically improve your HbA1c and "get your HbA1c down" is not a goal, it's a wish. If they haven't been supporting you by saying exactly what you should do to reduce your A1c then they can't expect it to be lower simply by giving you a pump (I'm making assumptions here based on my own experience). I'd contact your MP as well because ultimately the NHS answers to them.

Here in Aberdeen, they also make threats at every appointment - if you don't do whatever the latest thing they want you to do they'll stop your funding. It's always a "what" they want you to do rather than a "how" ... like "reduce your A1c by 1% in the next 3 months, without any mention of how you're supposed to do that. Luckily they haven't tried to actually stop my funding yet but if they did I would fight with everything I've got. Shocking that this seems to be a general culture across the whole country - it's ridiculous to threaten us when they should be supporting us.

Hope you get it sorted out - let us know. Standing there with you in solidarity if nothing else xox
 
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Wanderer89

Well-Known Member
Messages
60
Type of diabetes
Type 1
Treatment type
Insulin
I had something similar with Libre a few year back, my a1c went from 83 to 52 after the first 3 month trial. I then had some troubles with hypo awareness and on my next check up my a1c has started to raise again. Instantly got Libre taken off me.

oh wow really they that strict? What did you do after it was taken off you? I’m on my 3 month trial now but my last a1c before i got the metre was 44. That takes some beating... I was really struggling with the control though so not sure how I managed that. Last year I was 61.
 

Maco

Well-Known Member
Messages
278
Type of diabetes
Type 1
oh wow really they that strict? What did you do after it was taken off you? I’m on my 3 month trial now but my last a1c before i got the metre was 44. That takes some beating... I was really struggling with the control though so not sure how I managed that. Last year I was 61.


I stopped using it, it didn’t particularly bother me if I’m honest. Probably an unpopular opinion but for me i found Libre terrible, the accuracy at times was absolutely shocking. Sensors falling off early or failing etc etc. I’m now using Medtronics guardian 3 with the 780G & I find it far superior to the Libre.
 

Wanderer89

Well-Known Member
Messages
60
Type of diabetes
Type 1
Treatment type
Insulin
I stopped using it, it didn’t particularly bother me if I’m honest. Probably an unpopular opinion but for me i found Libre terrible, the accuracy at times was absolutely shocking. Sensors falling off early or failing etc etc. I’m now using Medtronics guardian 3 with the 780G & I find it far superior to the Libre.

I bet it is.. I’d love something like this but it’s whether they would fund it. I’m sure it’s a life changer.