Completing the mission for PWD

So, I'm up late, with a "pesky" sensor on-board Janki (well it is only a few hours old so let's not be too harsh) and wishing that we weren't a couple of nights into an overnight basal overhaul (you know the scenario - it's been working well for a while, then chaos breaks loose; you think, maybe a bug, new dinner meals; then you realise it's for real and things have to change before T1D wins again).

Why the background? Well this post is likely to be more caffeine fueled than most :-)

So I posted briefly on the recent NICE consultation on CGM. Probably sprinkled a bit too much frustration (with the manufacturers, with the direction of the NHS...) in that one than I should have... But that's the reality of the situation that PWD are in these times of relative financial constraint and (often muddled) and competing claims for healthcare funding.

Today, I came across two "good" presentations that I wanted to share.

Input, JDRF and Diabetes UK have put together a very clear report on T1D technology access for young people with diabetes (hats off again to Input for being at the centre of this debate). It includes the latest published NICE Guidance on Diabetes management for young people (under 18 years old), updated this month (August 2015).

Type 1 Technology - A guide for young people and families

I won't repeat the report here in any detail - it's well worth a read in its entirety and only runs to eight pages of text. But I hope I'll be forgiven for pulling out one table. And it's not about tech itself, it's about the impact of the precise wording NICE chose when compiling their Guidance. The choice of three words (Must, Should and Could or their equivalents) has a huge impact on availability of funding and the national variations in funding that can occur when different local funding bodies interpret the weight of Should and Could in their decisions to fund T1D technology or not here in the UK:

The second message comes courtesy of the 2015 Diabetes Hands Foundation MasterLab for Diabetes Advocates. I thoroughly recommend listening to the whole set of presentations at TuDiabetes.org. Yes, they are orientated to the US system (healthcare insurance and politics) but I think there's a fair bit of carryover of the underlying messages to this side of the Pond.

This evening, in the context of my thoughts around the just-released NICE Guidelines, Emily Coles' is the standout presentation of the class. Not only is she a very good public speaker and knows how to hook her local audience in the room, she keeps the message simple, powerful and easy to remember. I wish I could do that each and every time I stand up and open my mouth in the day job...

She makes a great analogy to a project in WWII aimed at maximising the number of aircrew returning from missions (simplistic, yes, but still a good one I think). It boils down to something like this I think:-

• Value (just think financial value for now)
• Aircrew and aircraft are valuable
• PWD are of net financial value to society when they are fit and healthy
• Mission Failure
• A lost aircrew and aircraft will require considerable investment in time and money to replace (build a new one, train a new crew)
• Poor diabetes management costs considerable amounts of (lost) time and money now (DKA, severe hypos) and in the future (all the nasty stuff being stored up for later in life) that the health economy will have to try to deal with
• Solution? Increase chances of successful mission completion by giving
• Aircrew an optimally protected aeroplane
• PWD the tools to achieve and maintain good blood glucose management

The message is clear - give PWD access to whatever is needed to complete the mission.

For the aircrew, the USAF apparently started to gather evidence of most vulnerable bits of the air-frame. They looked at where planes that had returned from missions had been struck and deduced that it was the areas not hit that needed protecting (making the assumption that aircraft lost had been hit in those places). There was the evidence and action was taken to protect the air force's investment.

Although some basics are generally accepted, based on the conclusions of NICE on CGM - to take one example from the UK - we don't have the clear and complete evidence yet about what combination of technologies, training, education and monitoring (i.e. the T1D care system) is really important in achieving better management and better outcomes in T1D. Not enough to give a full bright green light for CGM funding for all youngsters for example. i.e. not clear enough to drastically reinforce the T1D defences with CGM on all aircraft flying at the moment...

The challenge for us (am I allowed to use an 'us' when I've only been part of the T1D community for coming up to a year?) is to keep the message simple, get engagement, keep the ear of those in charge of the healthcare levers, whilst supporting the gathering of evidence that will, unfortunately, be more complex than counting bullet holes in a plane.