The Self Monitoring Fund. A mechanism to allow CGM for anyone on the NHS?

tim2000s

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Following yesterday’s NNF conference on Continuous Glucose Monitoring (CGM) and the ensuing Twitter debate that frequently happens with these types of event, I gave some thought to an alternative approach to funding CGM.

What it boils down to is that, instead of being tied to Self Monitoring of Blood Glucose (SMBG) using finger prick strips, the budget that NICE allocates for ten times daily finger prick testing could be applied to both CGM and SMBG, and the patient would be responsible for managing that budget and making up the difference in any costs that arose. A perfect example of patient centric care.

Instead of mandating that the only way that prescription monitoring can be provided under the NICE guidance for those who fall outside the prescriptive requirements for CGM, it should be possible to apply, through either your Diabetes Care team or your GP for a “Self Monitoring Fund”. It is a similar model to the Personal Health Budget.

Let’s be clear on this one though. This is not for everyone. The standard model of care is the NICE guideline. Each patient gets the standard SMBG provisions and supplies as normal. They can apply for CGM if they qualify under the criteria listed previously. The Self Monitoring Fund is undertaken on application only. It is not the new “Normal”. In patient centric care, the patient gets to decide, in association with their healthcare team, what monitoring would be most appropriate for them. If they feel that a combination of SMBG and CGM is appropriate, then they can apply for and move on to this model. In doing so, they rescind their right to SMBG as standard on the NHS.

It’s very simple. When a patient decides and their HCPs agree that instead of being provided SMBG test strips, they will take management of this into their own hands, they apply, either through their Diabetes Clinic or their GP, to the CCG for the Self Monitoring Fund. The fund provides for £1,059 to be spent by the patient on monitoring supplies and technology. In any way that they elect to do so.

All supplies will need to be available through the NHS Prescription service so that the normal prescription model is followed. This would also allow the GP, for example, to track the cost – most GP prescribing systems contain the cost of prescription items, so it’s a short jump to be able to allocate a cost per patient. When, via the prescription system, the annual fund is exhausted, the patient must purchase additional monitoring supplies out of their own pocket. Whatever those monitoring supplies are. This should come as no surprise to the patient, who should be managing this anyway, and is part of the contract that is signed on application for the fund. Both parties have to go in with their eyes wide open on this one.

Given that the companies that provide these items are already working with the NHS, this shouldn’t be a huge jump.

The benefits to this approach are in better patient care and in evidence gathering for future guidelines and use of NHS funds.

1. This isn’t a one size fits all approach. It’s an “on application” model that means you only do it if you feel you can and your healthcare team agrees.

2. It allows those who want to define their own care model to elect how they monitor themselves and what technologies to use to do this.

3. By including the details of how many patients have applied for and are using the “Self Monitoring Fund” approach in the National Diabetes Audit, it allows a clear picture to be obtained as to the demand on the NHS for CGM. The prescription data also adds to this picture. There is currently doubt that this demand is as high as the Diabetes Online Community (which is very noisy) makes it seem.

That’s the proposal. I’m sure that I’m likely to have missed something, and as with all these things, there will be challenges along the way. The question for the GB Diabetes Online Community is “Would you be willing to work within this type of framework?”. It’s not the panacea in terms of the NHS paying for everything, but I don’t think it should be. The NHS can’t afford to cover everything for everybody. This allows a way for those of us who want it to get better coverage to do so, without causing extra cost and headaches.

Who knows, it might even encourage a better deal on the price of the CGM supplies in the UK if the NHS had signed up!

What do you think of this as a budget-flat approach that could be considered via the NHS? Full details are available on my blog, including a lot of the evidence that has gone into this.
 

BeccyB

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I'd definitely be happy with an arrangement along these lines. I hardly ever use a finger prick test now I have the libre. It would be fantastic to have some of the money the NHS would've been spending on strips to help with the libre costs.

I agree it certainly wouldn't be for everyone though - it would need strict budgeting to make sure you didn't find yourself not being able to afford to test at the end of the year, I know some people wouldn't want to take that responsibility and risk.

I would also add that it would need an escape clause so that anyone who tries and finds it doesn't work for them can go back to 'normal' without a lot of hassle.

It could also help those that are being forced to use cheaper brands by their GP/local CCG as they could top-up the money to their preferred strips/monitor if they want. Although this isn't part of your suggestion and may muddy the waters a bit if included as it's essentially about access to CGM.

Thank you so much @tim2000s for all the work you do trying to make life better for us all x
 
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tim2000s

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It could also help those that are being forced to use cheaper brands by their GP/local CCG as they could top-up the money to their preferred strips/monitor if they want.
I'd suggest that is already covered in the way the system works - there are plenty of ways to deal with it already. I think it's something I'd keep as a separate issue.

Thank you so much @tim2000s for all the work you do trying to make life better for us all x
Hey - no worries. If you have an idea, why not publish it!
 

TorqPenderloin

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Assuming I read your post correctly, your proposal sounds very similar to the healthcare savings accounts (HSA/FSA/HCSA) we have here in the US. Before the start of each year, I elect how much of my paycheck I want put into this account (I currently allocate $2550 which is the maximum allowed). As long as I use that money for (qualified) healthcare expenses, I don't have to pay taxes on the funds.

Unfortunately, creating these separate budget/management accounts isn't as simple as it sounds...at least here in the US. The process is often contracted out to a bank or other third-party which is an added expense.

I definitely think you're on to something, and I've always believed that partial funding of CGM technology realistically has to happen before full funding. It's just a matter of finding a way to integrate the idea into the existing system.
 

tim2000s

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Assuming I read your post correctly, your proposal sounds very similar to the healthcare savings accounts (HSA/FSA/HCSA) we have here in the US. Before the start of each year, I elect how much of my paycheck I want put into this account (I currently allocate $2550 which is the maximum allowed). As long as I use that money for (qualified) healthcare expenses, I don't have to pay taxes on the funds.
Similar, in that if you elect to do this, you have a specific amount, however, it's basically handled via the NHS. Your budget is set against your GP account for expenditure purely on glucose monitoring supplies. When that is exhausted, it's over to you. It's basically a ring fenced allocation of your NHS resources rather than something you take out of your existing work account.
 

catapillar

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But it's not an either or approach is it? Either finger pricks or CGM/libre.

The dexcom and the enlite aren't marketed as replacements for finger sticks, they require calibrating, they say not to use their readings for treatment decisions without checking with finger stick, they aren't recognised by dvla.

Only The libre is marketed as a replacement for finger sticks, but it says to finger stick if there is rapid change, if there is hypoglycaemia, if symptoms do not match readings and it is not recognised by dvla.

I have no hypo awareness. I exercise. Such extreme exercise as walking home from work dropped me from 7.7 to 1.2 in 60 minutes yesterday. I currently meet guidelines for CGM funding, but I do not have funding (because my ccg hates diabetics). When I'm using my self funded dexcom (not in use yesterday because the transmitter is dead) I still finger prick approx 10 times a day. And in such exciting circumstances as walking home from work all alternatives to finger pricking would tell me I also need to do a finger prick.

Maybe I test too much? If someone can advise which of my 6 tests so far today weren't clinically necessary, my fingers would be grateful: 1) waking and pre breakfast 2) pre exercise 3) post exercise 4) post walking to work 5) hypo 6) pre lunch?

My spend on freestyle lite test strips, required for my pump (£15.80/50) @ 10/day = £1,153.40 PA

I've already exceeded my budget.

My spend on dexcom, assuming I get 21 days per sensor and 12 months for transmitter = £1,532.50 PA

So even if I only use dexcom (despite the need to calibrate twice daily and dexcoms own guidance not to make treatment decisions on the readings) and I stretch the life of the dexcom successfully I still exceed my budget. I can't get away with a cheaper libre because I need the alarms of a dexcom to compensate for no hypo awareness.

I think it's a good idea. I think there is definitely scope for personal health budget to be used for diabetic management. I think the proposed budget might be a bit tight. Especially if we take into account the limitations of CGM/libre for replacing finger sticks.
 

tim2000s

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I think the proposed budget might be a bit tight.
The proposed budget is what NICE calculated that SMBG 10 costs in their Type 1 Diabetes guideline. As it stands, I use strips that cost £15 per box, and if I tested 10x per day, I would budget £1,095. I don't test 10x per day because I use CGM, and (look away now) bolus from it!!!! You need to be confident in the behaviour that you would be exhibiting and the tools you were using to agree to take the funding this way.

The point is that this is not a way of getting completely free CGM. It's a way of ameliorating the crippling cost of CGM for those who don't qualify for it, and saying - "Okay, you want responsibility for your care. The NHS will subsidise some of it", allowing access to a solution in a cost-Neutral way to the NHS and cost-beneficial to the patient.

If you are completely Hypo unaware then the NICE guidelines already state that you have one of the qualifying requirements under which the NHS should consider supplying CGM already - as a result, you wouldn't need to engage on the SMF and should engage with your HCP team to get fully funded CGM.
 
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catapillar

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The proposed budget is what NICE calculated that SMBG 10 costs in their Type 1 Diabetes guideline. As it stands, I use strips that cost £15 per box, and if I tested 10x per day, I would budget £1,095. I don't test 10x per day because I use CGM, and (look away now) bolus from it!!!! You need to be confident in the behaviour that you would be exhibiting and the tools you were using to agree to take the funding this way.

We all know qualifying for funding does not necessarily equal getting funded. :)

Blousing from your CGM is fine for the individual. The reason I think it might be a stumbling block for your plan is because it would be very risky for the NHS to encourage/endorse using device in a way that the manufacturers explicitly advise against and that it is not currently licensed or approved for and to give what is essentially a financial incentive to use a device in a non-approved way.

However, I believe the G5 has just been granted FDA approval to be used as a replacement for finger sticks. I think for it to get equivalent approval here that would require EC marks and maybe NICE approval? Probably a few more hoops to jump through, but not unachievable I think you need that first and then the your plan appears more sustainable/viable.
 

tim2000s

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We all know qualifying for funding does not necessarily equal getting funded. :)
No, I agree, but given the NICE guideline is very clear, everyone who it applies to should be encouraged to make an application if they feel it will help them. And the CCGs don't really have much of an argument against.

I believe the G5 has just been granted FDA approval to be used as a replacement for finger sticks.
It's been approved for bolusing in the FDA recently. It has had approval in the UK (and Europe) since September 2015.

Blousing from your CGM is fine for the individual. The reason I think it might be a stumbling block for your plan is because it would be very risky for the NHS to encourage/endorse using device in a way that the manufacturers explicitly advise against and that it is not currently licensed or approved for and to give what is essentially a financial incentive to use a device in a non-approved way.
And when the NHS gives out CGMs to those who they do pay for and they bolus from it, how does that follow?

Again, the NHS won't say anything about using products in a way that they are not approved for. This is not an endorsement of that. When you sign the contract that says "I want to use this fund and I will pay for supplies beyond its use" you will also be signing a disclaimer stating that you understand the terms of manufacturers for the use of their devices. The NHS will continue to say "Change sensors after manufacturers stated time".

This isn't about endorsing someone to "Go and break the rules" it's about saying "Here is the set of products you could use, the rules are defined by the manufacturer. Choose which of them you want."...
 

GrantGam

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It would be simple if it were like the following:

-I want to use CGM.
-I'll pay for my own test strips if the cost of CGM and calibration sticks (Libre aside) go above and beyond my current annual cost for strips.
-Thanks very much.

It's so simple, so, so simple. But will not happen in a million years. The NHS thrive on making things as costly and difficult as possible, it's such a shame for a system which was built on an awesome concept.
 
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tim2000s

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It would be simple if it were like the following:

-I want to use CGM.
-I'll pay for my own test strips if the cost of CGM and calibration sticks (Libre aside) go above and beyond my current annual cost for strips.
-Thanks very much.

It's so simple, so, so simple. But will not happen in a million years. The NHS thrive on making things as costly and difficult as possible, it's such a shame for a system which was built on an awesome concept.
That's exactly what it is. Except the only real budgetary allowance we have is what's stated in the NICE guideline model, so in reality, that's what we have to use. It's more or less correct though.
 

GrantGam

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That's exactly what it is. Except the only real budgetary allowance we have is what's stated in the NICE guideline model, so in reality, that's what we have to use. It's more or less correct though.
Yeah I agree fully, it's a good point and one which I hope (some day) will be an option for us diabetics.
 

Diakat

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Sounds interesting. I guess discussions with your healthcare team could indicate roughly the top up required? I think there would need to be clarity on that as in my case mortgage, childcare, commuting costs etc would have to be considered first.
Also shocked that NICE day 10 tests a day (have missed that in my reading) as my prescription gives me 5 a day which is no where near enough unless I never drive, exercise or commute!
 

iHs

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[QUOTE="catapillar post: 1245327, member: 32transmitter We all know qualifying for funding does not necessarily equal getting funded. :)

Blousing from yotransmitterine for the individual. The reason I think it might be a stumbling block for your plan is because it would be very risky for the NHS to encourage/endorse using device in a way that the manufacturers explicitly advise against and that it is not currently licensed or approved for and to give what is essentially a financial incentive to use a device in a non-approved way.

However, I believe the G5 has just been granted FDA approval to be used as a replacement for finger sticks. I think for it to get equivalent approval here that would require EC marks and maybe NICE approval? Probably a few more hoops to jump through, but not unachievable I think you need that first and then the your plan appears more sustainable/viable.[/QUOTE]
I would not want to trust the data from a G5 transmitter to be accurate at the moment and could not tempt me to no longer use a bloodtest. Maybe the G6 transmitter will be much better but will have to wait and see.
 

tim2000s

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Sounds interesting. I guess discussions with your healthcare team could indicate roughly the top up required?
You'd need to make that assessment yourself really. What the NHS would need to provide would be the tariff for the products you use, and then you'd work out what you got for the fund available. That would then allow you to work out what you'd need to spend additionally, if you wanted full time CGM for example.
 

AndBreathe

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@tim2000s - In your proposed model, what would there be to accommodate/cover/prevent anyone from using up their budget before the relevant period was up (unless it were a definitive, brief, rolling period of a month, say?

What would happen if someone, for whatever reason, needs to do mega-testing for one or more periods of their budget, and therefore requires many more tests than they have been granted a budget for?

Clearly, that would be irrelevant, provided the individual was using a CGM.

Apologies if I missed posts covering this, as I did do a bit of scan reading. :sorry:
 

tim2000s

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@tim2000s - In your proposed model, what would there be to accommodate/cover/prevent anyone from using up their budget before the relevant period was up (unless it were a definitive, brief, rolling period of a month, say?

What would happen if someone, for whatever reason, needs to do mega-testing for one or more periods of their budget, and therefore requires many more tests than they have been granted a budget for?

Clearly, that would be irrelevant, provided the individual was using a CGM.

Apologies if I missed posts covering this, as I did do a bit of scan reading. :sorry:
I guess the salient point here is that if you are planning on or are using CGM full time, you already have budgeted something in the region of an annual £1500 over the top of any care you are getting in order to provide yourself with the supplies. So what's really happening is that your budget becomes your £1500 + the NHS contribution that you can determine how to spend instead of "Test strips" + £1,500.

If you aren't planning on using CGM, then you might as well stick with the standard model. Get your test strips on prescription with no limits. It's not a one size fits all approach.

There are really three drivers for this idea.
  1. Constant complaint from a small minority that they can't get CGM on the NHS, as they don't fit the CGM criteria of NG17. This is a proposal for those people to put their money where their mouth is and take control of their own budget. It allows CGM "on the NHS" but isn't a fully funded solution and is supposed to remain cost neutral to the NHS. It also comes with a level of patient responsibility. Much as I hate to use the term, it's a "co-pay" model and if you want to use something that the NHS is struggling to afford, then you have to bear both the upside and downside of it.
  2. Disbelief from a fair portion of the medical and diabetes world in the real demand for CGM. It allows the real demand to be captured through NHS systems and some proper numbers to be provided.
  3. To force CCGs to properly consider CGM funding. There are now very clear guidelines for what is and isn't valid in terms of CGM provision. A surprisingly large number of current self-funded users fall under the criteria for CCG support. While I know it's not an easy sell, talking to HCPs and highlighting these factors to get them to push for provision is key.
Personally, I don't fulfill any of the criteria. If I did I would be pushing my D team to get me CGM. Simple as that.
 

slip

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I can see the NHS bosses rubbing their hands in glee with this, 'we'll need a self-monitoring director, area directors, area managers, account managers at every site, assistance for each of them, oh and the nurses can do all the admin work......' ;)

I like the concept Tim, but is it the small end of a big fat wedge.