Ever come across the often repeated sentence…"level the variation in the NHS?" I mean, you would probably have to be under a rock to ignore it- and frankly, there rarely is a conference or a meeting where this is not debated, slides presented, lots of policies made- and the barriers are well known. Plenty of work is being done, will continue to be done- and the drive continues to bring more to the "mean"- or at the very least bring the outliers a bit closer to the data pack. When you take that concept to innovation, then we walk into further complicated territories. The NHS, by nature, is cautious (you can't blame them - our fingers continue to be burnt by the latest fad out there); factor in many other issues such as finance, money etc- and its a cocktail of epic proportions
So- beyond the powerpoint and the glossy documents and the proposed solutions, how does it all work- or for that matter, not work? Thought I would share some personal experiences- my blog writes are becoming less- apart from time constraints, evidently whatever I say nowadays could be construed as NHS England…albeit it comprises less than 10% of my working time…so one has to be "careful". I suppose there's always a silver lining- someday I could write a book- ah the experiences I have collected is simply..well…lets just say you could run a season of W1A on it.
Anyway, I digress. So- back to innovation and adoption. One of the things I focussed on was getting technology to Type 1 diabetes patients- a bit more accessible. The Freestyle Libre was a case in point for me- I don't have any special love for it. I haven't got paid by Abbott, I don't have any shares in it- but I know a truck load of folks who could benefit from it- but can't as they don't have the finances. Plus for me, it was setting the tone, sort of a road test of the bigger challenges ahead- not just in Type 1 diabetes- but overall diabetes care. Could the community work together? What challenges would come along the way?
So- the first thing about innovation is "Its too costly". Thanks to the work done by DH and negotiations with Abbott, the company dropped their price by approximately 30%- a drop of £110/month to £70/month. I thought that was pretty good nifty negotiations by all concerned.
On top of that, we did a significant amount of financial work on this with the DH to ensure it wouldn't bust anyones budget- IF used in appropriate patients.
Next came-"Where's the guidance?"- so promptly came a national guidance- done by a group of folks comprising of CCGs, Pharmacy leads, Specialists, NICE, GPs etc etc
This was followed by "But NICE haven't approved it"- correct (Doing RCTs in technology takes time- and the world of tech doesn't quite stand static)- so we put tramlines as to who should get this device (NOT all)- and the company agreed to a national audit- data for which would be made transparent- and further inform NICE.
Then came "But this isn't Continuous Glucose Monitoring- so it can't replace it" - out came the International consensus statement suggesting it actually was exactly that- just a different type.
After all that, came the actual battle. Having to go through individual CCGs- its a bit like trench warfare. And THIS is where the variation REALLY kicks into gear.
Lets give you some good examples…Greater Manchester, Cumbria, Derby, Brighton…all agreed with the national guidance and said "Let's start". Then you have - let's say Somerset CCG who have said yes- but one of the mandatory criteria to getting a glucose monitoring device is to make sure your BP and Cholesterol is below "target". What glucose monitoring has to do with the other targets being on point…well…I have been left scratching my head a bit to be honest. The national guidance doesn't say that but the local one puts those stipulations in.
Then you have Worcester who have said "No"- before the national guidance was published- but their next review will be in 2020. Why? Well, I don't know to be honest. Closer to home? Pan Hampshire- it looks good so far- final decisions due on 14 Feb. However, next to it sits Dorset who have said "No"- their documents doesn't even bother referring to the national guidance. So basically, if Hampshire says Yes, then if you drive up the A338 and take the M27 for about 45 minutes, you may get this innovative device if you fit the criteria. Same NHS…how intriguing is that? Or if you are a person with Type 1 diabetes, how shallow does the N in the NHS look at this point?
Finally, we have London- an absolute lynchpin to the process. Why? Because a huge amount of expertise sits there- as does the notion of this being a hotbed of technology. Hopes have been high due to the fantastic work done to get all working together regards the Transformation Funds. I have publicly said- and will repeat the laudable effort put in to work as a group.
However, at last check, as regards Libre it appears that there is no date to a decision- London evidently is so big and complicated it needs an "Implementation Guideline" which will come up with recommendations of "How to Implement" by April 2018. Factor in specialists themselves not agreeing where this device would sit- debating about changing the national guidance- and its a fascinating exercise in its whole self. Some may ask why make all the details public- well- I get emails/texts/twitter messages regularly from desperate parents or carers asking where things are- why people in Wales are getting it- and not England- so lets be transparent about all of this.
Personally, I am amused. I rarely get frustrated- (after all- I have enough fun in life not to get frustrated by such oddities)- and I also do know that just like the other areas going "live", so will London and other areas "happen" too. Some are taking more time, looking at others, perhaps will need more nudging- and to those who ask, No, we in NHS England can't and to be honest, shouldn't mandate this. It HAS to be up to local professionals to find the way, learn from other areas- thats the whole point of localism, rather than command and control!
But as a fore-runner, it also gives a sense of challenges ahead to any technology implementation- or indeed any work in variation. As a national body, we have negotiated the price, helped set up a transparent national audit as well as provided national guidance. Its not always the "national" team who can sort it- its also down to local economies to learn from each other- and not set out rules which makes variation worse.
To patients out there, I appreciate and feel your frustration- but this blog is to highlight the challenges we face too. I applaud all those areas who have worked together to help get this device to patients- as well as charities such as Diabetes UK and JDRF who have been tireless in their efforts. All I can say is we are trying- and with time, many more will come on board.
To the diabetes community:My genuine appeal? If we can't crack this simple bit, then the next phase of CGMs is far more challenging in present financial times. Think beyond your own centre, your own unit…we may- just- be able to do something good together.
Key to Map below:
Orange: Not Approved
Grey: To Decide
Link: (Courtesy of Diabetes UK):