Cgm Petition On Nhs

[awiseman]

Hello,

Bellow is a link to a petition to get continuous glucose monitoring on the NHS

https://petition.parliament.uk/petitions/151064

Please sign and share

Thanks
Alice

 

[DunePlodder]

The petition was launched by MP Jamie Reed:
https://jamiereed.net/2016/08/16/west-cumbrian-mp-launches-diabetes-petition/

 

[iHs]

I've now signed this petition BUT........the NHS won't be pressured to fund CGM unless patients using it share the data with their diabetes consultants against bg meter readings so that some sort of accuracy can be determined and then to decide to negotiate a price with the companies that produce cgm technology, to make it cost effective.

 

[tim2000s]

The cost in this isn't just the CGM. It's the amount of money you'd need to spend to get the majority trained up and capable of using it. In staff time. Where is this going to come from? We are much more able than a huge proportion of the t1D population.

 

[iHs]

What training??? Dexcom is easy to set up without help from a dsn but if it is a requirement involved in cgm to be funded, then that might be a problem as some hospital clinics only have 1 pump trained dsn due to cut backs so this will be a problem

 

[tim2000s]

What training??? Dexcom is easy to set up without help from a dsn but if it is a requirement involved in cgm to be funded, then that might be a problem as some hospital clinics only have 1 pump trained dsn due to cut backs so this will be a problem

I think the bigger issue is going to be people learning how to interpret data and then acting on it. You don't see it much on here, but on CGM groups on Facebook, there are very many people who turn up and say, "Look how bad my graph is. What do I do?".

Whilst CGM on the NHS is great for those of us who can deal with the data and the implications of it, there is a far greater number of people that doesn't own their diabetes. They allow for/ask for HCPs to indirectly manage their changes for them. CGM really doesn't help this fairly large group. But if you make it available on the NHS, how do you ensure that the people who get it can use it effectively?

 

[Robinredbreast]

I've now signed this petition BUT........the NHS won't be pressured to fund CGM unless patients using it share the data with their diabetes consultants against bg meter readings so that some sort of accuracy can be determined and then to decide to negotiate a price with the companies that produce cgm technology, to make it cost effective.

Sounds good

 

[Robinredbreast]

Hello,

Signed
Bellow is a link to a petition to get continuous glucose monitoring on the NHS

https://petition.parliament.uk/petitions/151064

Please sign and share

Thanks
Alice

Signed and shared

 

[Engineer88]

@tim2000s wouldnt you write that into the acceptance criteria like Belgium have? So if you don't 'use' your CGM more than 70% of the time you lose it?

Already signed

 

[Louise2016]

Signed, anything to get our voices heard!

 

[tim2000s]

@tim2000s wouldnt you write that into the acceptance criteria like Belgium have? So if you don't 'use' your CGM more than 70% of the time you lose it?

Already signed

What does use it mean? I can "use" it without it doing me any benefit. I just stick a sensor in my arm and the data gets collected. That's using it, but not using it effectively!

 

[Engineer88]

What does use it mean? I can "use" it without it doing me any benefit. I just stick a sensor in my arm and the data gets collected. That's using it, but not using it effectively!

Sorry should have been clearer (again) I mean there should be some guidelines around use age like hypo awareness/basal adjustments and whatever. if you don't meet minimum use guidelines you lose it

 

[paulliljeros]

I think CGM is the best thing that has happened to my diabetes in 30 years BUT I am concerned that the anecdotal stories we have about how amazing CGM is at the moment is skewed. I am generalising, but I think it's fair to say that almost every single user of CGM is funding the £1,000's themselves. They therefore have vested interest in getting the most out of the sensors and the data, and as a general rule, only those that are truly interested in improving their control and health are using it. Once they are given for free, I fear the wastage, and personal investment in benefitting from the CGM technology will drop enormously, and so we need refine what we are actually asking for from the NHS, and more importantly, how we are going to ensure it is not wasted.

 

[noblehead]

They therefore have vested interest in getting the most out of the sensors and the data, and as a general rule, only those that are truly interested in improving their control and health are using it.

No that's not entirely true, costs is a big consideration and prevents many people (who take an interest in improving their health) from self-funding a CGM.

 

[tim2000s]

This is the issue. Those who want it and can't afford it, shouldn't be denied it because those who have never heard of it aren't interested.

But how do you ensure those who aren't interested don't take the pee? Especially when many aren't interested in SMBG and treating themselves properly. Do you simply not allow them access due to their "previous"?

 

[1abRat]

I suppose if you were to set some sort of high barrier for eligibility like
- Has attended a DAFNE or similar course or can evidence a good ability to adjust doses etc.
- Willing to attend a CGM course that might run for something like 4 mornings and actually show up!
- Can evidence that they continuously record their blood glucose and make suitable changes (i.e. 3 months of diary entries)
- Start them on the Libre as it's not as much upfront cost and follow-up
- Maybe even some sort of basic psychological screening

Of course the problem with this is that it's a big burden on staff time again but I wonder whether the likes of Abbott, Dexcom etc. might be happy to throw some cash in there as they would stand to make a great profit from NHS prescribing of their products, but this is of course probably wishful thinking.....

 

[anniehi41]

I think there is already a requirement in the NICE Guidelines August 2015 about continuing with a CGMS, if you are granted one. If I remember correctly you have to show you have reduced your HBA1c by 27 mmol (or a certain percentage) or presumably you would not be allowed to continue with it.

This technology can be a lifesaver and could save the NHS millions in the future. Those of us who are using CGMS need to let the Consultants, Doctors, Nurses know how good they are and how they help avoid hypos and hypers thus helping to reduce costly hospital admissions.

 

[TorqPenderloin]

Once again, this survey fails to provide a compelling reason for the NHS to approve coverage for CGM technology. There needs to be a more comprehensive outline of the potential cost savings that justifies the cost of coverage.

13 million GBP sounds like a lot to all of us, but it's not even half of a percent of what the NHS spends each year on diabetes (around 3.5 billion based on figures found on DCUK). Even if the NHS could negotiate each system down to 2000GBP per year, and a CGM could (unrealistically) reduce the cost of hypos down to 0, the cost savings would only justify coverage for about 6500 people which is less than 5% (and probably closer to 2-3%) of the T1 population in the UK.

Sadly, this is not about saving lives. It is about saving money. It is unfortunate, but the NHS (and most healthcare systems around the world) cannot afford to save lives without additional funding, or cost savings in other areas of treatment. Pulling funds from other treatments means lives are potentially lost to other diseases so that's not an option.

As a Dexcom G5 CGM user myself, I believe there is a path to coverage under the NHS, Medicare, and other government healthcare systems under which CGM technology is currently being discussed. HOWEVER, I have yet to see anyone present a compelling argument and justification for the coverage.

There needs to be a full outline of the potential cost savings including:
Reduction in emergency expenses (here in the USA, that more than 40% of the total medical cost of diabetes)
Reduction in medications (specifically in test strips, but to a less extent things like insulin as more accurate doses can be given)
Increase in productivity primarily for those in the labor work force (it accounts for nearly $30 billion lost each year here in the US)

 

[donnellysdogs]

My CCG have a very set policy on expectations of CGM users...

NICE are stupid, basically focusing totally on returning hypo awareness, and my CCG have limited CGM under exceptional/individual funding application to be solely based upon hypo awareness and it returning in 3 months!
I was given a CGM 4 years ago fully funded by my CCG then. 4 years on (so not just 3 months) my CCG are insistent on an exceptional/individual application being completed.. They can't even see that people need them for other reasons than just hypo's... Thanks NICE!!

To get application for me underway this is todays status:
Report from my cancer therapist;
Report from my stomach consultant;
7 page evidence from me;
Evidence from my previous consultant;
A retired consultant specialist brought in to consider my evidence;
A funding manager.

This is before my nurse then submits it to my consultant to a Panel of 4 persons.

If refused and appealed I have to go before the Chair of the panel and then theres 3 appeals possible.

When one CCG can allow consultants to make considered decisions, why does another waste so much time and money with a 3 month funding request?

I am taking this forward now with two MP's and the Chief Officer of my CCG as I believe they are being discriminatory under the Equality Act 2010 against persons with life time permanent disabilities.

Please sign the petition...
If you tjink of the amount of persons with complications due to higher levels...amoutations, retinopathy, renal failure and the cost of this treatment to the NHS... Don't just think of hypo's..

Think of people like me who've had lymphnode removal and can't test in one hand due to breast cancer mastectomy. I have paralysis of my stomach/colon and I have looked after myself too!! Its no fun having dificulties eating/testing etc and people lime me need a CGM....

 

[anniehi41]

Well said, donnellysdogs, there is no equality. It is about time NHS England got their act together and sorted this out. You are obviously exceptional and should not have to go through all the stress and lengthy process of having to prove this through Individual Funding Request route. There won't even be a Diabetologist on the panel.