WeAreNotMoving - CGM Funding

Let me start this post with four words - we are very lucky.

We have access to insulin.
We have super support from our paediatric diabetes team.
We have a pump, a good one too..
We have CGM.
We have the NHS (for now...)

Now we're even luckier. We've just managed to get funding for Enlite Sensors. We self-funded Enlites initially when we moved on the 640g in February. We now have NHS funding (at least for now) for our Janki, who is not hypo aware.

I think the game changer was having three months of CGM data, showing plenty of (often just avoided / reduced) hypos and plenty of leg work (10-20 finger pricks per day on top of the CGM to validate actions - more boogie boarding with our four year old than Sugar Surfing...). I don’t know if that helped tip the balance but we got the outcome we needed for now and so a period of self funded CGM was definitely worth the investment in the long run in my mind.

For the T1D community, one obvious problem is that there does not appear to be any consistencyin the decisions made on funding or not to fund. Admittedly, I'm not in any position (or have the necessary professional skills and experience) to assess each situation / application 'on merit' - I'm just picking up posts on social media, what people have shared on the web and from personal messages - but the UK is clearly full of little T1Ds and their parents who have been less fortunate than us in securing funding but appear to be a similar position in terms of clinical need.

Some sort of postcode lottery appears to be operating in England. Why is that?

Well, for one thing the NHS is, arguably, more complex than at any time in its history. The recent changes introduced in the last Parliament were quite a shake up... A quick (6 minute) fly-through of the changes can be found below (alternatively, the finished graphic is here):-

Clinical Commissioning Groups (CCGs) appear to be in the driving seat on most things T1D. They have a tough job navigating through the huge and varied demands on their limited budget and rely on specialist input (from multiple sources) to make decisions about how to spend their limited pot of money and make it last to the end of the financial year.

For CGM, funding in England relies on producing evidence of exceptional need (i.e. the consultant must demonstrate that their patient stands to gain more than the majority of other similar patients) through an Individual Funding Request (IFR). One of the implications of this is that if a clinic (or to be more precise) a region have an unlucky run of particularly difficult / high-risk patients who they feel may well benefit from CGM, and submit a stack of IFRs, they appear to risk having the local commissioners take the view that these patients are no longer 'exceptional' and then refuse to fund. It would also appear than some CCGs are more enlightened / better supported in terms of the overall healthcare (economy) impact. Hence the postcode lottery.

Hopefully, some of that variability will be removed by the publication of a new assessment from NICE: Type 1 diabetes: Integrated sensor-augmented pump therapy systems for managing blood glucose levels (The MiniMed Paradigm Veo System and the Vibe and G4 PLATINUM CGM system) is due out next year, If it supports some (well-defined) use of CGM in T1D that'll be progress I think - CCGs are much more likely to consistently go along with NICE guidance (although my understanding is it's not legally binding).

Of course it may also mean that everyone currently funded is re-evaluated against the new criteria...

The next meeting on this one is at the end of the month in Manchester. As a T1D community we're fortunate to have a handful of diabetes advocates on the advisory committee, including Dave Sowerby. And, as ever INPUT Patient Advocacy are involved - this charity comes up time and time again in the posts I've seen on this subject and do a stunning job of promoting pump, CGM and diabetes tech in general. You can currently give to INPUT and encourage Kev Winchcombe to pedal faster here.

By the way, if you want to find out more about your local CCG spending (in England) on diabetes (and other conditions) in all parts of healthcare, take a look here. Diabetes is 0.4a on the type list (sometimes just bundled in with 0.4 Endocrine, Nutrition and Metabolic conditions, but click 'show sub-categories' where possible once you've enabled macros in Excel).


Having run with the 640g and full-time CGM for close to four months I can honestly say I can't see a situation where I'd stop using CGM, Enlite or otherwise (unless Janki said she wanted a rest from the insertions). So for now - in homage to #WeAreNotWaiting, #WeAreNotMoving :-)

And if the CGM funding stops, the ebay fire-sale begins; nothing's more important is it?