Accessing Real Time CGM in London. The unfair fairground?

London. A city of 10 million people, 32 boroughs, five Integrated care systems (ICS), and probably 66,000 people with type 1 diabetes.

London. Also a city with a Diabetes Clinical Network and a procurement partnership. Two NHS meta-organisations designed to improve collaboration across boroughs and ICSs.

NICE guidelines that say that anyone with type 1 should be offered Continuous Glucose Monitoring based on needs.

Three points that need to be brought together to enable access.

So what is London doing?

The roll out of the NICE guidelines across London is in the hands of the Diabetes Clinical Network. Hopefully this time around, what they say will be accepted by all the ICSs, unlike the case with Libre, where one borough’s CCG in South East London, held up the entire rollout for a combined group, because they disagreed with it.

What is the Diabetes Clinical Network’s aim?

It’s very simple. The aim is to ensure that no-one is left behind, and that access across London is equitable to all. That means those who don’t see specialist clinics (apparently around 30% of Londoners with T1) as well as those of us who frequent social media and are the first to jump on something new.

How will this be achieved?

It’s a good question, and one that there isn’t a clear answer for yet.

Firstly there are questions as to whether those who aren’t particularly involved in their diabetes are even aware of the new guidance and access to rtCGM, which is a fair concern.

There are also concerns that some of those that aren’t the ones who would jump on the new stuff, may be overwhelmed by the data, and may need coaching regarding the data increase that CGM of any type presents.

Additionally, there are questions about the difference between the constant push of data from a real time CGM and the ability to choose to ignore a flash CGM, and the effects on the user, which may require extra support in users.

There are no obvious answers to the above. Peer support has come up as a place to start, as has “appropriate education” and healthcare system support. None of it is easy if equity is desired.

Is that a fair way to proceed?

It’s balanced. It makes sure that no-one is left behind in the system design, but it also moves at the pace of the slowest participant and potentially reduces access for those who are capable of accessing it earlier.

But here’s the big one. These systems are already on EMIS. That makes them simple to prescribe for healthcare providers.

So what is fair? Unfortunately, fair is subjective, and dependent on where you stand.

For someone who keeps asking for something they think should be available, waiting for a system that enables everyone seems unfair. These people can and will figure out ways to make the system work for them.

For someone who doesn’t know about availability because they aren’t engaged in diabetes care, or social media, being told it is available to them by a GP would be a huge step forward.

Fair is a challenging concept, but can we make our own “fair”?

How can we change things?

Let’s go back to the point about realtime CGM being available on EMIS. This makes it easy to prescribe.

So if it’s easy to prescribe, we should encourage our GPs to prescribe it. If you’re engaged with type 1, you probably know your GP quite well. If not, make friends with them. Give them the confidence to prescribe the system to you because you know what you’re doing.

There is plenty of training available if you feel that you need it, both via the system providers and the Association of British Clinical Diabetologists and the Diabetes Technology Network.

After all, NICE guidance is national, not dependent on local rules.

But what of those who aren’t as engaged? While we wait for the London Diabetes Clinical Network to arrive at its endpoint, why not work with your surgery to help them understand better what the tools are and how they work, so that they can better inform their patients? Offer to spend an hour going through the difference between flash and real time CGM. Explain how data delivery is different. Help them understand the pros and cons of the technology, so they know how to engage with others.

And the London Diabetes Clinical Network?

And the London Diabetes Clinical Network? What they are doing makes sense, but, as I’ve said directly to them, communicate what you are doing, not only to those within your network but to those of us who want the systems and who need to know.

While your approach is admirable, not even being able to provide a date to be able to tell us when you’ll have completed your consultation and can provide a date for deployment is not acceptable for something like this. I knownive agreed to be involved in helping you with this, but there are some challenges.

We know you care, and we know you want to do what’s best, however, maintaining the patriarchal NHS stereotype that has pervaded for a number of years isn’t helpful.

I’ve also said that I think the approach should look something like this:

1. The basic London pathway documents should be updated and shared across primary care and pharmacies. Having reviewed the Libre documents, this is a comparatively small job.

2. An interim position statement should be provided to primary care prescribers that indicates a few things

a. If a patient that is already using rtCGM requests it on prescription, this is okay and it would help the primary care services if they work with these patients to better understand rtCGM.

b. If a patient using flash CGM requests rtCGM, there should be a discussion between the primary care representative and the patient using guidance that clearly states that rtCGM is push technology and that this means there is no hiding from it. If the user accepts this, go ahead. If the user is at all concerned, refer to secondary care.

c. If a user has no experience of either Flash or rtCGM, refer them to the online training and peer support. If they are still interested after this prescribe with a referral to secondary care as an urgent CGM start.

3. Develop and roll out, with dates, the platform to enable access to the 30% who are currently not seeing any secondary care clinics. This will include all those on the register of primary care only patients, details of how communication will be made to those, and how primary care can discuss additional tools and service access with them as part of routine care.

Whether the London Diabetes Clinical Network likes it or not, having rtCGM on EMIS and engaged patients involved is already going to create the variation in care, whether they like it or not, so enabling all those involved, from patient to primary care, should be the top priority.

Social Media has changed the way that people access care and services. Unfortunately, I think the way that care groups organise themselves needs to recognise this and adapt.