Sunday, January 20, 2019

Not white enough

Yet another report. And to be honest? Its got a huge massive "Meh" reaction from me as someone who is a BME. Or BAME. Or whatever acronym I am bunched into nowadays. I refer to the NHS WRES report. You can read it- probably the main bits are there on page 6 and 7. The reaction from leaders will be a collection of "makes for sober reading"; "we need to continue to progress" or even "reflect and learn". Or something glib along those lines. While the majority of those who are BME will look and smile wryly.

I have been a Consultant for 10 years- and have been hearing of this endeavour or schmaltz (deepening on your view) ever since. Just google "NHS and racism"- and you will find reports after back to as long as you want to go to. (Roger Kline has been doing a lot of sterling work exposing this issue). Heck- here's one from 1999 for all its worth - a time when Sir Sam Everington was a mere Dr!

Lots of councils, meetings, power-points, conferences etc later...the report will tell you where we all are in 2019. You can rail against that by saying something like "progress is being made"- but here's some factoids for you.
The BME staff percentage is about 20%. Total number of CEO who are BME across ANY of the arms length body associated with the NHS? Zero. Thats not to say those in post are unqualified. But it's another thing to say not a single soul among those 20% in the NHS- or wider pool in society are unqualified either. Its isn't as if there isn't an effort- but subliminally, somewhere- there continues to be a block. My own trust? Efforts underway under our new management team- with lots of good work- but every single time I walk past the pictures of those who form the executive team? I smile- wryly.

To be frank, I don't know why the NHS bothers- it could just turn around and say "Sorry chaps- this ain't for you". It may make things easier- but then again, I suppose the world of political correctness stops that. The problem then is that it gives rise to tokenism; gives rise to belief that even 1 person getting something somewhere is an achievement beyond parallel.

And it percolates every layer- things are said no one would say to someone white; decisions are made which doesn't feel right- and I have examples littered - whether it be within organisations I have worked in and yes, even within NHS England. It's not the organisation- its the mindset- something about an inherent belief that a person of colour contributes less, knows less....take the example of Julia Hartley-Brewer. Recent radio interview suggesting she would like to be treated someone trained locally; comments about their grasp of English. Do I believe she is racist? Don't know- but she, like Piers Morgan are clever- they know exactly what they are doing; the xenophobia they subtly fuel- and live on the oxygen of publicity. Thats their livelihood- and they know the reactions it will bring makes their case for being public figures stronger. What they however do- is set that ingrained thought one step more. Why indeed hire someone who may..."know less?"

The other thing which makes me chuckle is when folks who have never gone through what BME folks do go with.."Are you sure? Not over reacting?". Recently I mentioned an email I got when doing the Libre battle from someone very high up in a CCG- the initial reactions were just that from a few. I had to share the content- just to prove my case. And that's the NHS for you.

Sadly, I haven't seen the NHS progress much on this issue- yes- there's more talk about it; more tokenism- and plenty of junior posts are made available. Top jobs? Still out of reach- have a look at most recent appointments across all leading organisations. Pick any board- anywhere- and if you believe your leaders should represent the workforce- another reminder that the % of BME staff in NHS is about 20%.

So to be honest? Many like me have stopped caring- and the counter mechanism to all that? More of the modern outlook. Which basically goes along the lines of "I know I am good at what I do...and I don't need to keep proving myself to you". So life goes on- you want to be seen by me, you want my help- come and ask. You don't? Fine by me too. And the veiled disdain is not just in management- it exists clinically too.

I will finish with a few examples of what I have faced- and this is me- someone confident, not shy of an opinion and happy to go toe-to-toe with anyone- whatever their position. Examples of being asked to apply elsewhere for a Registrar as "my type" was better suited to the Midlands; being called a "boy from a third world country" in a Consultant meeting with execs around; being shouted at by someone in communications while trying to do a clinic with words like "do you even understand English"...I could go on- with much more subtle references- but that gives the flavour.

Do you know what was common about those? All of those incidences were before I revealed my personality and style to the organisation or personnel concerned. A whiplash retort; aggression etc has  further stopped any such occurrences- and I cant have a sadder indictment of a system that its only counter aggression which has stopped such behaviour. Why the sadness? Because the majority of BME I know? Don't want to resort to such behaviour or indeed can- so they bear the rest in silence. Case in point- has anything happened to any of those folks involved with me? Nope. Did anyone else stand up after this was relayed to them or the fact they were witnesses to the incidents? You must be kidding.

Another report will make no difference- its only fills yet another library space. The NHS is what it is- and we all carry on- as we were. My tip? If you want to change things? Don't insult or patronise us with tokenism. It's worse than actual complete ignorance.

Friday, January 11, 2019

Long Term Plan

January....and arrival of yet another plan for the NHS. The "NHS Long Term Plan"
How did it land? Maybe a mixture of meh as well as cautious optimism...but in general, didn't cause any major headache neither was it seen as a fundamental game changer. The main reason? Not the plans per se but the perennial worry creasing a lot of eyebrows...the workforce or lack of it.  If I am honest? I haven't read it all..I am aware of  the headlines and ambitions but mostly my focus has been on diabetes and what landed for the diabetes community as a whole.

So,let's see where we got to, what was funded and what wasn't.

The first part was the expansion of the National Type 2 Diabetes Prevention Programme as was hand in hand the confirmation of the story of trialing low calorie diets. Plenty of detractors to both but the low calorie diet story to me was more about putting a scientific trial (DIRECTstudy)  into real world situation and trying to learn lessons from it. The associated conspiracy theories of "NHS England ignores the lobby of low carbs" also eased with the announcement via NHS digital that the low carb app had a place in the library- officially. We intend to follow up uptake and subsequent short, multiple options on the table. What works? I suspect at the end, it will be the people who will decide, not policymakers.

A commitment to ensure all hospitals had presence of multidisciplinary foot teams and inpatient diabetes nurses was a big step forward- as anyone with any form of memory in the diabetes world will know. It tied in with the continuance of the transformation funds which the diabetes HCP community has had over the last 2 years- around 76 million £ in total. It will help to continue to recruit inpatient nurses, podiatrists etc...with the challenge or Achilles heel being not the money, but the staff. However, there has been a collective sigh of relief from the diabetes HCP world at the money continuing- and undoubtedly a big feature of the long term plan as regards diabetes. A lot of work is certainly ongoing in the nursing community to make sure we have many taking up this specialty.

The digital aspect appearance was obvious with the focus on it all across the NHS long term plan. A commitment to have an online version of structure education for Type 2 diabetes was only to be welcomed- on 2 counts. Firstly to give yet another option on the table as regards education but also another recognition of research done - with the HeLP study work being formalised into practice. What about Type 1 diabetes? Watch this space. The platform created and released in 2018 to help self-management in Type 1 diabetes is due to evolve further.

And finally, there was the bit about CGM for all Type 1 diabetes patients. Based on evidence and improvement of neonatal outcomes (CONCEPTT study) this was an example of policy embracing science. Not a whim, not a fancy....but policy as dictated by evidence. If Libre access was the tip of the spear, this pushes the issue of technology access further in the NHS. Can the community deliver? Time will tell.

 In addition, the Freestyle Libre expansion was confirmed in the plan with further operational guidance making clear the funding pathway. This isn't new money and quite rightly too. 
If 75% of CCGs could fund it in 2018, giving new money to the remaining 25% would be a "reward"  for refusal to engage. Nope, this is CCG money held back to help fund what's needed. 

So there we have it..a mixture of things to help in prevention of type 2 diabetes, continuance of treatment and care with focus on 4 specific areas (improve safety in hospitals; improve amputations; improve uptake of education and improving treatment targets); further focus on digital means of delivering education and finally a big change in how technology access is provided for those with Type 1 diabetes. Not too bad...and if we could galvanise the community to deliver even half of what the intention is? We would have made some significant progress.

Could it have been more? Of course...personally I would have wanted more for technology but no doubt the door is certainly open. As documented previously, there area reasons beyond our control which have influenced this and the company concerned who had a hissy fit about Libre taking precedence did manage a back track...yet I suspect enough was done by then. Whatever the motivations? It certainly hasn't helped. But then again there is much positive to look up to as well. Future work around maternity health and mental health would possibly supplement all this- so all in all? Not too bad at all.

I suppose at the end of the day what matters is not the plan but how it is received by those living with diabetes and the folks working on the ground. The reactions from Diabetes UK and JDRF have been positive as has been the reaction, in general, from HCPs and those living with diabetes.  If one asks me about the success of its delivery, it hinges on 2 things...workforce and the level of cynicism. Social media is good at the latter, sometimes healthy, sometimes corrosive...but at the end, it's also down to us to help cut the cynicism and deliver what is asked.

Hopefully with the delivery of the ask from the community (transformation funds, Libre) and some unexpected surprises ( CGM in T1D pregnancy) the cynicism will be lower than normal...and to be honest? Without the workforce behind us, a plan is as good as a piece of paper. Time will tell where we end up but for now? We as a team are satisfied. The next phase is the delivery. And that , as a professional, can only be an exciting challenge worth looking forward to.

Thursday, December 27, 2018

Top Ten

It's that time of the year...the time of the Top 100 or Top 50..of pretty much anything. Mostly fun- mostly for folks to discuss and disagree with- but causes debates- whether it be the Top 10 movies of the year or songs...there will always be some who "cannot believe how X, Y and Z were left out".
To be honest, part of this was prompted by a recent HSJ list- "most influential people"- yet another list of debate - in which the total number of folks involved in diabetes care? Zero. Which perhaps shows how useless/inconsequential these lists can be too.

So lets do a list- a list of my own. Don't be offended if someone is not there- its based on MY observations, interactions- and am sure there are many, many beyond the "Top Ten" I will mention -who have done amazing work for diabetes care. It's also about highlighting some who may not be in the public domain much or indeed beating their own drum on social media. The "criteria" is "work which has moved diabetes care forward - as per my personal observations.

Ready? Here we go!

10: Data-Cruncher: To kick off the list, I will start with Nick Cahm...a steadfast ally gifted with an incredible ability to data crunch the use of Freestyle Libre (or anything!) across the country. Shining a light into areas which tried to change criteria, denied all paved the way for an NHS England step in. Outstanding work- and I thank you Sir for your work. The diabetes community will and should owe him a huge round of applause for the fundamental shift in technology issues regards diabetes. A work whose impact will be there for years to come.

9: The Quiet One: A driving force behind some of the fast moving changes in North West London- Tony Willis. Quiet and unassuming- you would be living under a rock not to be aware of the drive and zeal with which he leads an eclectic team -all geared to improving diabetes care. Pushing boundaries- one of the template for good diabetes care could come from this part of the UK. What stood out? The desire to keep improving; the desire to keep coming back whatever be the knocks.

8: Dynamic Duo: The NHS England Diabetes team deserves their own place here due to the absolutely amazing work behind the scenes- but I will cheat a bit (well, its my list after all!) and single out 2 from within the team. Ben McGough and Jeff Featherstone. You will rarely hear about them beyond management circles- yet without them? Most of the work from the diabetes team wouldn't be happening. Absolute gold as colleagues and pleasure to work with- with incredible tenacity and ability to deliver things. Much kudos- and thank you chaps. To use a foot ball analogy? While the Messi and Suarez may take the glory, without Iniesta, Barcelona wouldn't have won a lot.

7. Lady Tenacious: The Language Matters work- a driving force behind it was Anne Cooper. A fabulous ally to have- and her drive and desire to get this done was encouraging as well as delightful to watch. Anne needs no introduction to many in the diabetes and nursing world- but she left her mark on 2018- with a piece of work that could help change how we deliver care for years to come. 

6. Irish Charmer:  At number 6 lands the sole representative of the industry- Oliver Mitchell from Abbott. I have worked with industry for many years; made many friends (and enemies)- but the calmness, tenacity and willingness to listen and adapt from Mr Mitchell has been one to cherish. Smoothed a lot of pathways to help Libre gain traction- and many in the diabetes world of the NHS should doff their caps to this man. Without him? The progress would have been slower, much slower.

5. Force of Nature: If you are in diabetes care, you probably haven't been able to avoid them. The DSN Forum- led/developed by Amanda, Sarah, Rebecca, Susan & Beth - they have been here, there, everywhere. The infectious enthusiasm has been one difficult for anyone to ignore- and has brought the role of nursing sharply into focus. An initiative which has disrupted the system in a positive manner- and helped spread messages of good practice with the regular blogs and newsletter.

4. Project Leader: Number 4 brings to the fore Nikki Joule from Diabetes UK- yet another person behind the scenes whose ability to coordinate things together has been most admirable. Try putting more than 2 clinicians in 1 room and come up with a consensus. She managed to hold multiple egos, views, thoughts in check to deliver a technology pathway in Type 1 diabetes which could be the blue print for something special. Another person behind the scenes- yet so much good work achieved without much fuss.

3. Leicester Lions: One of the best duos ever- perhaps even better than Mulder and Scully- the 2 powerhouses of Leicester- Melanie Davies & Kamlesh Khunti. A perfect mixture of fire and ice- pushing the barriers of what good diabetes care should be like. Some good game changing research- as well as turning Leicester into an area for others to look and emulate. Always there to give advice or constructively criticise where needed- an incredible team which has helped to further diabetes care in 2018.

2. Wonder Woman: Someone who has never ceased to amaze me with what she can achieve -with everything on her plate- Emma Wilmot. An inspiration for many, including me- and frankly, without her, much of the work I have led? Wouldn't have happened. A passionate and fierce advocate for improved diabetes care- and someone who has made sure the Diabetes Technology Network has got bite and snap too. A matter of time before she leads diabetes care in the UK- and deservedly so.

1. The Statesman: Top of the tree? Unquestionably one man- Jonathan Valabhji. The gentleman of diabetes care- whose work has taken diabetes care forward many a steps. Genteel, measured, polite yet focussed. It is no mean feat to get England to be the first country to set up a national Type 2 diabetes prevention programme or indeed trial low calorie diets from research. Or indeed lead on all the things that have come from the NHS Diabetes team. Biggest feat? Somehow controlling the massive unpredictable ticking time bomb that is me- and helping to focus that into the right areas. A man who gets unqualified respect from me- and unquestionably the numero uno of 2018 for me.

So there we are- a list - solely based on my views. Flaws with that approach? Aplenty. People who could be on that list? Many for sure (As an example, I will briefly mention the name of Rachel Humphrey- look up her work on airport security and insulin pumps etc- the impact of which could be big in 2019). But it's mine- as viewed from my eyes while doing the role I have been doing. Plus its a bit of fun too- as well as recognising folks simply beyond the ones more visible in the public eye.

It would however be a travesty to not mention 2 groups- which are probably beyond any lists per se. The first is the #diabetes community or #gbdoc, whose views and words have indeed raised issues and helped shape policy (a simple message: Give us better tools for self management; give us more options) more than any research or otherwise.
And the "Renegades"- the ones driving the disruption of technology- the OpenAPS community. 2018 is when they came more to the fore- I suspect they will have a bigger say in 2019.

So- thank you all- thank you to many MANY others beyond this "list" who have taken diabetes care. step forward. It's my Top Ten for the year- and its one heck of a powerhouse of a list.

Will 2019 bring forward some new stars to the fore? I have no doubt it will. And that can only be a good thing!

Saturday, December 22, 2018

And that's a wrap

I have always liked setting goals..not targets- but more like goals or even aspirations..targets bring with it pressures of its own- (ask any hospital emergency department what targets do!)and it's more like a personal reflection when you look back at what had been set a year or so back.
2017 Chronicles was a fun blog to write- detailing what the NHS Diabetes team had achieved in 2017- but more to the point was a set of aspirations as to what could be done in 2018.

Now in December 2018, you look back- most were delivered, some in progress but overall? Perhaps a satisfying year. There have been some good progress on multiple fronts- whether it be pre-diabetes; Type 2 diabetes or Type 1 diabetes- for those who want it- with relevant links too:

Expansion of the National Type 2 Diabetes Prevention programme
Starting of implementing of low calorie diets to help in remission of T2D
Type 1 Diabetes resource platform 
Language Matters work
Type 1 Diabetes technology pathway
Frailty work in relation to diabetes
Working with ABPI and AHSN to deliver the Diabetes Hot House
Kickstarting the Mental Health work in diabetes care
Consultation work on blood glucose strips
Working to define role of pharmacists and dietitian
Updating of ambulance guidelines for treatment of diabetes emergencies

Of course, a personal story- which I have practically lived with so many others in public forums has been the journey of Freestyle Libre or Flash Glucose Monitors. To me, it signalled the putting go technology on the map, putting Type 1 diabetes on the map- and yes, that has made me singularly pleased. If even one person benefits from this -without having to depend on their ability to buy? The job has been a success.
In between, we managed to sneak in the 2nd comic book; a Rise of the Machines event-showcasing OpenAPS etc and the 3rd Talking About Diabetes event. Time flies when you are having fun- and so many willing allies to help you along the way.

To wrap the year up? The NHS Apps Library had its latest entrant - The Low Carb App. For me, this was about two things- for starters? Giving people options- as well as the chance to work with those who are strong proponents of this- and gather data, evaluate etc. The message? Very simple. Engage with mutual respect- the door is open. Start with abuse, sarcasm and rudeness- don't bother engaging.

So...what about 2019? Plans galore- all of which has the spectre of Brexit and political uncertainty looming over it.
If we can somehow keep that aside for a moment (for the record? All ya clever people- please don't leave with a No Deal) then areas which will gather pace hopefully are:

The Mental Health work 
Taking the Hot House project further into implementation 
More focus on self management (Type 2 diabetes online education programme)
Something in maternity 
Closer focus on spends on products such as glucose strips and medications
Out of Hours support for those living with diabetes
Working with NICE regards Type 2 diabetes guidelines

The GIRFT work will hopefully conclude, the revised Libre guidelines and implementation plans will come through and of course there will be time for the subsequent editions of "Rise of the Machines" and "TAD".
And then of course there will be the long term plan of the NHS- which will have further details about the future plans and priorities. Did I mention the Virtual Reality training bits to improve safety of diabetes patients in hospitals? Now that IS very cool.

Personally? It's certainly time for a pause and a think. Carry on or not. A few things are in the mix- and the next few months will determine whether it's time for something else- or whether it's worth taking up the next set of challenges or maybe even giving something back to Portsmouth. Or even whether NHS England want me to continue this role...there is that too.

And finally- a big thank you to all those within the NHS Diabetes team- beyond the public face of Jonathan and me, sit many who will never get the credit for the work they do- or the effort they put in. So a big thank you to Matt, Jeff, Tom, Ben, Clare, Adrish, Kate, Leicia et al. I appreciate our comms team sometimes struggle to second guess my next move (I hear Gaviscon bottles have been lying around -empty- in Simon Enrights office...)- but in the end? They have been the right moves- they have landed reasonably well in the diabetes community- and that's what matters most.

To all others- especially those who have been fabulous sources of support and help- charities such as Diabetes UK and JDRF - with of course a special mention of the #GBDOC community- I hope you all have a Merry Christmas and a peaceful 2019.

For now? Thats a wrap. Enjoy those mince pies and hope Santa brings you all that you had wished for x

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 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 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 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 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.

Saturday, December 1, 2018

Game is afoot

Another week...another round of news in the diabetes world. Giving rise to a gamut of emotions..ranging from despair, anger, frustration to delight, grudging admiration or even simply- happiness. As ever, the world of social media played its part....emotive, passionate, vitriolic, ignorance of actual facts, cascading of information- both correct & incorrect versions....yet a part & parcel of all our lives nowadays.

First came the news of the "clampdown on blood sugar strips". Where does one actually start with that? For starters, it wasn't a clampdown but a consultation exercise asking for opinions. There wasn't any proposal even to stop anything- but a simple philosophy- should we move to the cheapest strips in the blood sugar monitoring market? Then there was the media reporting which forgot to mention the type of diabetes being looked at. Mix the words "clampdown of strips" with "Type 1 diabetes"- throw in a dollop of social media wizardry - and the cocktail was as expected- lethal. Understandable outrage followed - which needed a number of clarification statements to douse that fire. 
Then came the question of "are we forgetting quality and just settling on cost?" Well, the basics are simple for the NHS. We are, whether we like it or not, in a cash tight environment. So if product A works the same as product B, then we use the one which costs less. That's pretty simple really- and ignoring that principle in a tax funded system is a poor approach to take in a policy role.
As regards quality of strips? Again, an approach has been made to all companies to define what "quality" meant. The NHS Diabetes team are waiting for a response to take forward that work. The question has been asked- how would you define quality? Should there be a quality index-and to be honest, that has been met with varying degrees of enthusiasm. Let's see how the industry responds to that now. 
What about patient choice? I suspect if you show a person that product A and B do the same thing- and you could use the money saved on something like say education? The debate does change indeed. In addition? If you are a company and want to work in the NHS, then simply putting a higher price? Isn't the game anymore. If you can't prove you add something else, the cheaper one "wins". You want a part of the market; passionate about the quality of your product and want to genuinely deliver patient centred care- rather than chatter? Compete on the price too. The gauntlet is firmly laid down.

To all those who live with diabetes...You want to know how much we could save by standardisation and negotiating prices? Depends on your maths- anything between 15-30 million£. Did someone say they needed more access to education, technology etc? The game is afoot and it's time we tackled this area. We will invest, as we have shown with transformation funds etc...we also need to be bold about where we can extract money from the existing system to use back for diabetes care too. Help us with that- be part of the consultation. We all have our roles to help improve diabetes care.

Next up was the expansion of the National Type2 Diabetes Prevention programme- along with the decision to trial low calorie diets to reverse Type 2 diabetes. This was the NHS looking at a genuine trial done (DIRECT) and applying it into real life. Detractors had their say, still are- but it's bold, it's new, it's adoption of research at lightening quick speed- and for sure, there will be lessons to learn and tweak. However, one thing is undeniable..the NHS is looking at reversal of Type 2 diabetes -officially. I also appreciate and take on board the low carbohydrate debate and why we aren't trying that. All I can say? Watch this space. There is no door shut for us- and we are fully aware of what people are trying too. We can't solve everything- but we are on the case- and as evidenced by our views on things like Libre or OpenAPS in the Type 1 world?  We like the concept of disruption and we really dig patient led disruption. A word at this point to acknowledge the incredible leadership shown by my partner in crime within the NHSE Diabetes team- Jonathan Valabhji. The quiet man of diabetes policy- yet impacting and changing care without having to make too much of a noise about it. 

It's been a fascinating year for diabetes care- battling along in a cash strapped environment- yet making- we think- some headway. Is it time for the Christmas lull yet? I would suspect not- heck- we have 3 weeks to do some more, don't we?

Interesting times, disruptive times, fascinating times. Let us see where it takes us. If 2018 has shown anything, it's the fact that we are not averse to making big decisions. However this all plays out? The game is certainly afoot.

Saturday, November 17, 2018

Libre, Uniformity ...and belonging

World Diabetes Day 2018. A day which will stay as a landmark day for me...culmination of 12 months of work. NHS England stepped in and decided enough was enough regards the post code lottery in relation to access to the Freestyle Libre - and have mandated a uniform uptake from April 2019.

So to some facts to shut down the conjectures, rumours, debates, discussions etc. First there is a national criteria - been out since January 2018. I am not going to go into the ins and outs of the why of the criteria as Nick Cahm eloquently puts the reasoning behind it in his latest blog. It's a guideline built on cost neutrality as far as possible, not on evidence primarily because the evidence base had been soft at that stage. The reason for the national push was simple- this was a paradigm shift in glucose monitoring- opening the world of non invasive glucose monitoring to the many- and it so happened Freestyle Libre was the first to come out. If it had been a product called Hallelujah, it would have had the same backing.

As things stand, there are 3 groups of who have adopted the RMOC (Derby; Hampshire etc); one who have adopted but tightened it/made their own criteria ( eg: Ipswich, Cambridge) and those who have said No ( West Kent, Shropshire). To put it simply, - from April 1st 2019, there will only be the first group across the board. Group 2 and 3 can either get on and do the right thing now..or still resist change till April 2019. I am not bothering anymore with requests- it's their choice to make. I have other things to focus on.

Will the RMOC be updated? Potentially- as there are a few things in the mix. The DVLA is a crucial aspect. We would have got it through if not for a rival company blocking it. Anyhow, when it comes out -as expected, the financial cost neutrality does change as would certain groups and their inclusion. A good example of that? Cystic fibrosis. They don't have type 1 diabetes- but checking 10-12 times / day- so makes sense to look into that. We will ensure a clear national guideline, whether it's the existing RMOC -or slightly tweaked version- is made clear and visible to all.

What about further expanding the reach? Will depend on evidence base as it appears. National data is being collected as are international real world data emerging. In 4-5 years, non invasive technology will be the norm- and this was about the NHS joining the curve at par with other nations, not 4-5 years later- as normally happens with any technology

The next question is what about other technology. Read my last blog- it's outlined there clearly- and the time has come to take up the battle regards CGM and Pumps too. We should also not forget there is a vast amount of folks who don't want technology either...and their care needs to be well looked after too. The national diabetes audit shows one thing consistently...a stubborn refusal of the % of folks achieving Hba1c targets. That's not there's the systems fault in my opinion.It reflects that we have are failing to grasp the intricacies of Type 1 diabetes management -which, to me, hinges on availability of self management, peer support, access to trained folks and technology. And they need to be present simultaneously. So we should. 

Then we come to the approach taken regards Libre. However you look at it, it's worked. Some have been uncomfortable about public "shaming" but funnily enough, those living with diabetes have found it be useful. For them, it's been transparency- things we talk about so glibly yet when we want to do it, it becomes all about self preservation. Has it been CCGs vs me? Nope..the country is littered with examples of CCGs doing the right thing..and lest we forget the majority did exactly that. Let me take a local example. GP leads such as Alastair Bateman or folks like Simon Cooper have been supportive from the start. Even CCGs which have struggled - it's been worthwhile to see people willing to engage, at least discuss and take things forward. Areas such as Birmingham, Bristol, Dorset..criticised by many yet for me, they were open to discussion, willing to explore and it was more a matter of time than anything else. The problem arose when CCGs refused to engage. Examples? No one from East England were willing to engage-.rather getting PresQuipp to be the broker of discussions; West Kent CCG who put in an email "No further discussion would be helpful"....what is one actually supposed to do at that point? What do you do when a CCG fields their complaints departments to be their go-to person but no one from medicines management would step forward? What do you do when you involve regional NHSE steams and they still go unanswered? What do you do when multiple emails go unanswered, phone calls go unanswered? Who speaks out for the local diabetes population then?

This is where the public exposure has been useful. It has given the patients a voice, it's shown starkly the discrepancy between the technology bubble we think we are entering, the innovation we so champion...and the reality on the ground. The public focus brought media into play, it brought MPs into play, it brought BMJ into play...and finally it had to crack, so it did. As I have always said? This was a matter of time and saying things like "we need to look at the bigger picture, we need to think broader are glib ethereal terms to me which makes no difference to the person on the ground. 

Finally? The personal attacks...I have never pinpointed individuals but CCGs as a whole (again, a handful of them) but in return, I have received a fair share of personal attacks. Condescending ones telling me what to tweet, what not to, what I should do....I am 45 years old, a father of a 16 and 12 year old, a Consultant for 10 years, I am not a child. The tone has been berating,disrespectful...and I am in no mood to take lectures from folks who pay lip service to the principle of a uniform NHS. CCG executives putting down in emails that "improving post code lottery in an STP isn't their job" is neither clever nor sensible..why go through a charade of building an STP or ICS if that's your view? 

I have always wondered whether the tone would have been such if I was a white male- and to cement that view came the absolute zinger...
"The reason why you are so aggressive is because you don't understand our country's culture".
I have spent 28 of my 45 years in this country and then that. Beyond the historically laughable fact of taking lectures from the British who have spent centuries aggressively invading other countries, it was something else that made my ears burn, a hot anger flowed through me. 
It was my dads words. He has always said I should just keep my head down, just do my in the end, "you will never belong". I have always fought that saying Britain as my country- and in that moment, it stung, it burnt, it hurt. I belonged, didn't I? At that moment, I wondered why bother.

Having reflected on it? It's actually done 2 things..first? It’s made me a bit more bullish. I hate racism and I hate covert racism even more. I have decided not be fazed with that low level of talk about culture and my "belonging". I don't need anyone else's endorsement- certainly not some jumped up CCG exec who feels it's acceptable to put that on email. I thought about putting this on the blog..and you know what? It's time to stop sweeping these sort of comments under the carpet. Let's make it open as to what BME folks do face actually. If people want to play the man, not the ball...that’s not my problem. 

And secondly? We now move into technology as a whole. Last blog mentions the blue print..add in same strategy of making it public who is doing what. Or not. You want to complain to NHS England?  Crack on. Worst case scenario- I will be asked to step down to protect some fragile egos. Fine by me...I can still do fact, with less restrictions than this role offers.At the end of it all? When you have patients on your side...heck, even GP LMCs on your side, you are on the right side of history.

So, here we are. 12 months of my life haven't been wasted..we have got to a uniform way of prescribing Libre. A few thank yous too for the achievement of that. 
To start with, Emma Wilmot for the setting of the challenge, all the CCGs who simply went and did the right thing, Diabetes UK, JDRF, INPUT for their unstinting championing, the many many patients who have helped and of course Nick Cahm whose data crunching has been invaluable. 
It would be amiss not to thank all those folks in the media who have been a great ally..Mark porter, Justin Webb or indeed Gareth Iacobucci in asking the right questions, raising the profile. And all those, especially Sam Jones, who have helped, comforted and given the determination to see this through. Final acknowledgement? The head honcho Simon Stevens for his support and making the call as needed.

I am all for improving care via a collaborative approach- as long as the desire to collaborate, keep relations don't sacrifice the improving care bit. It's as simple as that. If you work in the NHS and want to know about my determination and grit to see something through? Ask any of our 3 local CCGs. Or any of the 3 local providers. Or check how the whole Libre story went down. The focus shifts to CGM / Pumps...make sure you all have clear policies in place. And if not? Think of a reason why not..when you have areas such as NW London doing so well. 

One NHS. One policy. One rule. Type 1 diabetes care needs do not change based on where you live. Let's see whether we can do this without having to go to a national mandate again.