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CGM on the NHS - please sign the petition now!

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DiabeticJim

Active Member
Messages
32
Location
London
Type of diabetes
Type 1
Treatment type
Pump
Please, please sign this petition to force the government to consider funding Continious Glucose Monitoring (CGM) to be funded by the NHS.
Devices like the Abbot Freestyle Libre have been a revelation to me - I am lucky enough to be able to afford to fund it myself. It should be made available to all.
https://petition.parliament.uk/petitions/107435?reveal_response=yes
 
Where does the money come from. We've worked this out before. Annually, just buying the Libre would cost £340mn for all T1s.

If you read the response that is published there, it says:

"In August 2015, NICE published guidelines which recommend that such devices should not be made routinely available to people with Type 1 diabetes unless they are willing to commit to using them at least 70% of the time and to calibrate them as needed (as well as meeting certain other criteria). NICE’s guideline on the diagnosis and management Type 1 diabetes in adults (NG17) is available at: www.nice.org.uk/guidance/ng18."

This statement is why they won't be given to everyone. In this Danish/English study from 2009 (more recent may be available) covering 1076 participants, more than two thirds of respondents did not blood test daily. Only 39% actually tested daily or more frequently. With figures like this, there is no point in giving CGM to everyone. It is useless. The Libre may be better as a non-calibrated device, but as CGM needs twice daily calibration, it just won't work for the majority of the population.

As ever, unfortunately, the evidence in this case is just not good enough.
 
I signed it and had the same response.

Shame really as when I used one I really benefitted.
I can understand why they won't make them available though

Claire x
 
I am not suggesting it is given to all T1s - just those that meet reasonable criteria. Your statement, @tim2000s that it would cost £340mn for all T1s is both pointless and unhelpfull.
 
DiabeticJim said:
I am not suggesting it is given to all T1s - just those that meet reasonable criteria. Your statement, @tim2000s that it would cost £340mn for all T1s is both pointless and unhelpfull.
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The petition asks for it to be funded. The statement from NICE states that it is, subject to meeting certain requirements. As a result, the petition has been successfully answered by the government stating that they don't need to do anything further.

You stated:
DiabeticJim said:
Devices like the Abbot Freestyle Libre have been a revelation to me - I am lucky enough to be able to afford to fund it myself. It should be made available to all
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So my qualifying the cost of making the Libre available to all on prescription is neither pointless nor unhelpful, but important in contextualising it. If you are going to fund it you have to be able to fund it for all, and know what that cost will be, unless you impose limits on what you will fund. And we're not talking about having people know how to use the data. There's a whole other topic that can be discussed regarding training people (who aren't already getting appropriate training) to use this stuff. You can see that in the FB page for the Libre.

That's where we are now. Funding is approved. What we are discussing is whether the criteria are reasonable. That's what any petition needs to focus on. Not simply "get CGM funded".

Don't get me wrong, I think that these technologies should be available and we should have access to them. It's disappointing that the limits imposed make it very hard to get your hands on them as there is no doubt that this will help some people a lot. It's simply a case that our current NHS model doesn't allow for it.
 
i think cgm should be on the NHS more so than pumps.
 
DiabeticJim said:
I am not suggesting it is given to all T1s - just those that meet reasonable criteria. Your statement, @tim2000s that it would cost £340mn for all T1s is both pointless and unhelpfull.
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No, it's actually extremely helpful because it considers the most realistic factor....money.

These petitions show up on the forum every couple of weeks but they never gain traction because no one has yet to develop and actual budget or cost savings proposal to justify CGM technology.

I've voiced my opinion in the past, but I believe all of you need to be petitioning for subsidization or partial funding of CGM technology. At the very least there needs to be a free market to distribute Dexcom supplies in the UK rather than having to go through Advanced Therapeutics.

If you ever expect to be able to get this approved, you need to start smaller and ask for partial funding. That would significantly expand the user base which would in turn provide the NHS with more evidence to justify searching for the additional funding.
 
candi-girl said:
i think cgm should be on the NHS more so than pumps.
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Hiya Candi - sorry I disagree ! Pumps are vital for type 1 children to help manage their injections as they need the help in administering insulin as well as pregnant women, those with reduced hypo awareness etc etc. CGM's are great for expert type 1's who are keen to maintain good BG levels and understand more about what goes on, but pumps really are a priority. However with that said the Medtronic Minimed 640g can be used with a sensor that detects when BG is dropping and has a smart guard to turn off insulin, so the pump manufacturers are moving towards this technology
 
Don't worry, whilst not in the forum, these issues are being considered. The cost of the Libre system has been compared to SMBG and it's been determined that use of it is equivalent to the NICE recommended (8x daily SMBG) approach. What we have to wait for is the process to run through on that one (but there's talk of it being fast tracked as a result of some of this stuff, again all hearsay and rumour).

I wholeheartedly agree that the AT monopoly has been a huge issue and if the rumours are anything to go by, that is soon to come to an end.

The idea of partial subsidy requires working with the local CCGs and providing cost/benefit analyses. It's doable, and some are already working on it. It just takes a bit of time and a "good" CCG! Unforutunately, it's the nature of working with government agencies that are cash strapped that makes this a slow road.
 
DiabeticJim said:
I am not suggesting it is given to all T1s - just those that meet reasonable criteria. Your statement, @tim2000s that it would cost £340mn for all T1s is both pointless and unhelpfull.
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So where exactly do you think the money would come from? Before you answer please remember the NHS is broke.
 
TorqPenderloin said:
These petitions show up on the forum every couple of weeks but they never gain traction because no one has yet to develop and actual budget or cost savings proposal to justify CGM technology.
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OK @TorqPenderloin - I was not aware that these petitions were so commonplace.
The link I gave is not my petition - I started this post after receiving the Government Response to it this morning and being suprised at the measly 10k signatures.
You are right - the simplistic request for "Funding for all" will always fail as it is far too easy to dismiss this based on an excessive cost like £340mn. A figure that will never actually be required.
I was told that to receive funding in my area I would have to have had "at least a couple of A&E admissions for severe hypoglycaemia". That's some severe criteria

BTW - is anyone aware of the costs for Pump Consumables? I am. It's absolutely obscene what the pump manufacturers charge the NHS. £100+ for a box of six infusion sets!
 
I think it comes back to individualised care. Looking at the population as a whole, some will benefit from one approach, others a different one. It would be great if we could get funding for all of these...
 
DiabeticJim said:
It's absolutely obscene what the pump manufacturers charge the NHS. £100+ for a box of six infusion sets!
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You must be on the Insight for that. The Inset IIs are £105 for 10. Still pricey, but not as bad as £100 for 6.
 
CarbsRok said:
So where exactly do you think the money would come from? Before you answer please remember the NHS is broke.
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Look at the bigger picture. Improved health in the T1D population as a whole could result in a cost saving to the NHS. I can't prove that of course. Neither can Jeremy Hunt (not that he would ever want to).
 
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tim2000s said:
You must be on the Insight for that. The Inset IIs are £105 for 10. Still pricey, but not as bad as £100 for 6.
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Sorry, yes - 10 in a box not six. They are Inset II. I know the cost because Animas sent me the bill by mistake.
 
DiabeticJim said:
Look at the bigger picture. Improved health in the T1D population as a whole could result in a cost saving to the NHS. I can't prove that of course. Neither can Jeremy Hunt.
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It could, but it comes back to the whole population. The people who would use the technology aren't those who need the most help. Those of us who have found and afforded CGM and pumps are often likely to be the ones who are less likely to suffer complications as a result of our actions anyway.

The ones we need to get to are those 61% who blood glucose check less frequently than once per day. That's where the money is really needed. Not (as much as I'm loathe to say it) to those of us who are engaged and motivated to make those changes and who have made the jump in to trying to understand our Type 1.
 
DiabeticJim said:
Sorry, yes - 10 in a box not six. They are Inset II. I know the cost because Animas sent me the bill by mistake.
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Yes - that's the cost to buy them privately as well. But it's a another thing where NHS buying is poor. If they were bought by NHS UK, you could get a better price than buying per CCG.
 

The sentence I have highlighted has happened to me, due to things that have been going on in my life.
 
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