Saturday, December 8, 2018

Out of Road

There's always been 2 types of projects for me...core ones and fun ones. The latter has consisted of doing things like Talking About Diabetes (TAD) events; the comic books...while the core have been the Type 1 diabetes web platform; Language Matters and of course, improving access to technology. A principle in life has always been the habit of moving on to a different core project - only when the work is complete. It's sort of like a "thing" for me...I don't like unfinished Projects. They make me uncomfortable and uneasy. It feels like cheating.

I suppose which is why, as I arrive at a crossroad, you wonder how to look at the present situation. 
Increasing access to technology for type 1 diabetes has been a big drive for me- and the data will tell you the why behind it. However you cut it, the quality of type 1 diabetes in the NHS, if you want to choose Hba1c levels to target as a marker, has been distinctly average at best. I know many will say- and I agree- that numbers never reflect the true picture but if that's what extrapolates to complications or the lack of it, we need to take that into context. Have a look- as a population- and mostly down to primary care (much kudos to you all!) we do reasonably well in Type 2 diabetes. Once you look at A1C levels in Type 1 diabetes…its -well- average at best.


National Diabetes Audit -via NHS Digital
For me, fundamentally, it boils down to the healthcare community never quite getting to grips with the concept of self management for those living with type 1 diabetes. Whether it be peer support, language, mental health support, education or indeed technology, they are tools to help somebody live with the day in/day out rigours...just that bit better. Its fundamentally different from Type 2- but we treat them both as the same. In this particular Long term condition?  Improve self management- the numbers will take care of itself. Instead, the traditional NHS model offers little of that, much of didactic style support- which to be fair, is what it's funded for. Patients are starting to find their way around it- and perhaps forcing the change in thought- but it's slow, far too slow for my liking for sure.

Which brings us to technology. As mentioned multiple times, Freestyle Libre was the tip of the spear..creating a buzz, raising the profile of technology as a whole, creating the road for more technology to emerge. Name me one announcement from NHS England -which has focussed solely on Type 1 diabetes- or caught the imagination of press and public like the Libre story. It's what we call the populist version of technology and a simple yet effective innovation- which targets squarely quality of life. In addition? Cheaper than other alternatives. As a mass player, it's effective. But lest we forget, only a part of the whole technology piece. 
If you want to be a purist and look at evidence, look at the Dexcom G6, look at the 670G from Medtronic...cracking piece of technology- all geared up for better self management. Problem? The cost differentials. 

So there was always a strategy. 
Phase 1- drive Libre through and then Phase 2- get other technology embedded. The second one was the one which went through meticulous planning, much work behind the scenes, a lot of collaborative working- and a whole lot of energy and time. Ironically? Much more than actually the effort Libre needed. It involved getting the top type 1 clinicians together, patients, all of industry...to create a technology pathway. Then it needed working via NHS Improvement and GIRFT to look at things like "Category Towers" to line up national procurement strategy ( to minimise variation); it involved negotiating on the high cost tariff side of things....and one of the last part of the jigsaw was ensuring there was a standardised education portal for HCPs...to ensure those purporting to provide technology to folks with type 1 diabetes? Actually had evidence of training - publicly available. That too was set with Diabetes Technology Network & Diabetes UK working together on it. 
It felt good working together...everyone on the same page, same side- and 2019 looked like a breakthrough year for technology as a whole. I mean, to draw an analogy from a movie....it nearly was like the Fellowship ...HCPs, patient organisations, industry, national policy ...together delivering what type 1 diabetes care has been clamouring for ...for years. 
We had the pathway, procurement work ongoing, education platform developing- and then it was time in March 2019 for the push regards CGMs and Pumps.
What could go wrong? This was in the bag, wasn't it?

I suppose - as in life- alliances are always fraught with risk- especially alliances when you are asking industry to hold their nerves and believe in the vision. Believe that the widening of access would benefit them all...hold their nerve of any dips in sales or stocks noted, assure their shareholders that something big was around the corner, believe that the Libre story was a part of the bigger picture. And inevitably, someone cracks. So the alliance broke...questions arose "why Libre; what about us; where is our money?"....and in the twinkle of an eye? 18 months of work simply vaporised. The bubble that we could deliver this all-as a team- burst. There were rumblings previously  from some others previously  but personal conversations to reassure had been fruitful, had held the fragile peace together. Till one bypassed us all- and showed us all to be a divided ship. Like the Thanos snap, so much turned to dust- in an instant. It sucked as we had met the company concerned to assure…yet...

There was in addition the DVLA story with companies selling blood sugar strips raising queries on Libre potentially being given the go- ahead. The official line was they had concerns for patients, the cynic knew well enough it was the fear of dropping business of their products. ( For what it's worth, I didn't feel that rival companies should be allowed to give an opinion in a consultation exercise...it should be from specialists- and those living with diabetes. Everyone else is conflicted- period ) However, we had somehow managed to ride that storm...till the fresh crack in the alliance.

It makes me a bit sad..actually I lie. It makes me very sad...not because of what was not achieved, not because I didn't have one more thing to add to my CV....but genuinely? I thought we had the chance of a generation to change the game. 
Part of me thinks let's try again- but on this one? I am not sure I am the person anymore. Work of this nature needs a lot of trust- and recent events have shown that not to be across the board. I suspect it's now down to Diabetes UK, Diabetes Tech Network etc to pick up the pieces and go again- but this has been 18 months of my life- which I will look back with a degree of bitter sweet feeling- and always thinking how close we came to landing the big prize. I will always carry the Libre story as a happy memory, but it could have been so much bigger. Next steps possibly involve NICE approval, lobbying- but the reality? In a cash strapped environment, it will be tough. I know I have dips in energy....but somehow, this feels like the end of the road- it feels different. Can the path be retraced- yes- but will take a bit of time again- we perhaps are now set back by another 2-3 years.

To the Type 1 diabetes community, I am sorry I couldn't deliver it all-but I did give it a fair crack of the whip. I will make sure the Libre project is delivered, processes created, guidelines issued- but the overall technology work needs someone with fresh energy and blood- someone else who can convince the companies to work together. Without that, it will continue to be a post code lottery based on individual champions in certain areas. I am extremely grateful to Dexcom, Medtronic, Abbott, Insulet et al for their support and faith and I suspect the relations will hold over the course of time. 
This doesn't mean that technology won't be a focus of the team- but it does mean it cannot have me as the focal point anymore. Leadership is also accepting when its time to give certain tasks to someone else. As a team, we will provide support- and my personal core projects will be on mental health provision, finishing the GIRFT work, carrying on the fun ones (obviously!) and then perhaps-pastures anew. 

To the Emma, Pratik, Alistair, Diabetes UK, INPUT etc…we came very close- and the pathway is there - it needs following through. Always here for tips when needed.Its been one heck of a ride- but in the end? All roads come to an end. Once the bitterness passes? The good memories of the journey with technology, warm words from the community- and the many friendships built will likely be the ones which remain. 
A final word for industry? Disruption is something you cannot control- and watch how those living with Type 1 diabetes turn your worlds upside down. And that? Is coming.





4 comments:

  1. Noooooooooo.

    Oh Partha, my first emotion is to feel cross. To say, the road has been bumpy and you didn't get the results you wanted for the T1 community so you say you're done? Try being type 1.there is no end of the road. When you think you've had enough, that you've got no more fight left in you, that you don't want to deal with T1 24/7 any more? Tough. You've got it forever. You can't get off. So I'm frustrated you're giving up.

    But then I think with my head and I realise this is about you making a brave decision as to where you can be most effective for us. You could hang on, on an ego trip, or out of loyalty, and we'd love you to stay. There is only one Partha after all.

    So this is to say, please go with our blessing to where you feel you're needed, where you can help us the most. Thank you for moving the tech lightyears forward for some CCGs. And thanks for being you. Don't underestimate your power or strength, the force is strong with this one.

    ReplyDelete
  2. Parth
    Thank you for all your work. You have not failed. The rock that you have leaned afainst redolutely for yteaes has dt srted to move and will dtart rolling down the hill. The T1s out here are a canny group. We know that we know more than "them". Change will happen. Small steps by big communities will make the technology commonplace. Perhaps not as quickly as you(we? ) would want but it will happen.
    Use your energy and skills wisely and live your life to the full.

    ReplyDelete
  3. My friend Partha, you haven't let anybody down, far from it, you have given many people hope by your success with the Libre. As you say, this is the beginning of the new technology breakthrough. If you are able to, could you private message me the companies who want to stop the use of the Libre as an advice tool with the DVLA?
    My charity and I will happily take them on? They need to face the power of the ordinary folk who live their lives with Type 1 Diabetes. Best wishes. Gary Fagg

    ReplyDelete
  4. Thanks for all your amazing efforts - frustrating as the current situation is, & disgraceful as the behaviour of the companies has been, you have always put the needs of patients first. If only the companies would do too...
    The next time a rep says their company is 'working for patients'- I'm not going to groan inwardly as I do now, I will challenge them to show some evidence as to how they're doing this.

    ReplyDelete