Sunday, April 15, 2018

Across the divide



August 2010. Its always a tad nostalgic to skim through old emails- but that's how long back was the 1st meeting to discuss how we wanted to change diabetes care in South East Hampshire & Portsmouth. Many late nights, many meetings later- it was around September 2011 that the redesign of the diabetes model came to being. In between that, there were the nervousness of contracts teams in hospitals, the debates with one's own Trust, the financial calculations involved, a lengthy conflict of interest panel, multiple negotiations,convincing colleagues....yet finally we got there -the birth of the Super Six Diabetes Model. Much has been written, many papers have been published- and the mists of time make one forget who did help along the way.

Those were the days of Jim Hogan and Koyih Tan as GP commissioners, Lyn Darby as the local Commissioner, Melissa Way as the Strategy Implementation manager, Richard Jones as the Medicine Chief; Lesley Munro as the manager from the local community provider....some steadfast supporters-and of course, 3 fabulous colleagues within the department who let you get on with it. The course of time has been kind to us- and about 6 and a half years later, the model continues as we discuss the next steps- ready to tweak and evolve as per local structural changes- whether they be Accountable or Integrated care organisations or Vanguards or Hubs. 2011 was the time the South East Hampshire & Fareham/Gosport CCGs came on board- another long process followed post that and  in 2012 we got Portsmouth to join- post a tendering process with 5 bidders...and what an experience that was too!

As of 2012, we finally had all 3 CCGs under one pathway, all 3 local providers under one pathway- with one fundamental aspect to it- the same team delivered care across the secondary and primary care- same Consultants- no different, no one to "compete" with- but be responsible for the outcomes across the whole sector. Which- to be honest, is how a long term condition should operate. Without having to think of competing bottom lines; competing for resources, trying to expand a community service at the expense of the acute...nope, that is NOT how you can improve care in a long term condition.

Results have taken their time to come through- and much kudos to local commissioners etc- present times having folks such as Paul Howden, Sarah Malcolm- holding their nerves with the model of care. It has been and continues to be one of the longest standing models of care- referenced in the NHS Right Care pathwayKings Fund ; Diabetes UK documents etc
Documented papers on reduction of admissions have been published- which have been greeted with as most things in modern times. Respect and cheer from those who have believed in the principle; a look for conspiracy theories or flaws in the datasets from those who haven't liked this approach towards diabetes care.

Recently NHS England has published the Diabetes CCG Improvement & Assessment Framework (IAF)- based on a few agreed principles nationally with clinicians and patient organisations- such as participation in national audits, attaining targets, people attending education programmes, amputation rates etc. Grading has been given as Outstanding, Good; Requires Improvement and Inadequate- similar to how CQC look at providers.

Taking Wessex and Dorset region as a pack, there are about 8 CCGs or 2 STPs. Of those 8 CCGs, 2 have been Outstanding (Fareham/Gosport & South East Hampshire); 4 Requiring Improvement (Portsmouth, Dorset; Isle of Wight & North Hampshire) with 2 rated as Inadequate.

I absolutely make no bones about the pride it gives us to see the fruition of many years of hard work to see this- and the vindication of the principle to which we and the model of care has worked. It also shows work to be done in 1 of the CCGs we cover- and focus will be on that area for sure. The workforce has been a fraction of what other systems have used- thus showing its not just about the sheer personnel but also about the ethos of having one team across the divide. When we work as a community team, we have no dispute with the acute team-….we are it.


Lessons to take away for us- or even to pass on? As this is the Super Six Diabetes model- here are 6:

  • Use acute hospital for high end stuff such as antenatal diabetes, foot MDTs etc
  • Access, access and more access to primary care- whatever means possible- physical or virtual
  • You don't need fancy tech or Apps to do all that- simple old school relation building with primary care is where it sits
  • One team across the "divide". No distinction between acute or community teams. The term "Community Diabetologist" is a tautology- the hospital is part of the community.
  • Have patience, a lot of it- and give things time. Most importantly find Commissioners who are willing to give you that time too.
  • Have a good team with you- who will look after you- and each other.
What next? Have a read if you want..time changes, so does every model need tweaks. However, the principle stands- one team across the divide- and as Sir Muir Gray always says to me: "You, Partha, are a Diabetologist for the population, not for the hospital. Or the Community.
You serve the population."

And I can't put it any more succinctly than that.

* If you want to know more about the Diabetes CCG IAF- and how your CCG is doing:
https://www.nhs.uk/service-search/Performance/Search

** If you want to know more about the Super Six Diabetes model:
http://www.porthosp.nhs.uk/departments/Diabetes-and-Endocrinology/super-six-diabetes-model.htm 

Sunday, April 8, 2018

Up Next...

So, its April. For most people, thats spring time- for NHS circles- especially in financial terms- its the start of the yearly cycle. For us within the NHS England Diabetes team, its a fresh time for planning as well as ensuring some of last years good stories continue down the line.

The last year hangs over us as a start of hopefully something different in diabetes care- and much kudos to all in the NHS England diabetes team for what has been delivered so far:

  • Further roll out of the National (Type 2) Diabetes Prevention Programme 
  • Launching of the Digital arm of the NDPP- with assessments in place regards efficacy
  • NHS RightCare pathway for Diabetes to focus on specific priority areas for Return on Investment
  • In excess of 40 million £ invested to help in uplifting of education spaces (>90000 spaces) or increase in Diabetes nurses (>90 WTE nurses recruited) as well as improvement in foot care and treatment targets
  • Landing of Freestyle Libre in Nov 2017- and steady progress across the 4 nations
This year thus becomes more of taking some of the work forward. So- a sneak peek into whats in the pipeline over the next few months- or as much as feasible within the limits of reason. 

To begin with, a national website/ portal to help with self management of those diagnosed with Type 1 diabetes is long overdue- and hopefully will be finished shortly. Multiple stakeholders - including working with existing good portals such as T1resources , Diabetes UK, JDRF etc- but the focus of this has been / is to increase tools for self management; encourage peer-support and hopefully steer many towards much needed education courses. What has been educational has been working with many of those living with T1D and HCPs, under the guidance of NHS Digital, to develop this- hope the finished product will be what it says on the tin.

The recent acceptance of a paper in Diabetic Medicine hopefully opens the door for the much needed discussion on individualised care in diabetes and the relevance of QoF in this context. An ageing population. frailty are important factors- and diabetes care need to be adjusted accordingly- rather than incessant drive to targets which end up harming people. I anticipate a long road on this but so far, the signs have been positive with all relevant primary care stakeholders being receptive to this- so hopefully this will go ahead and take us - ironically- back to individualised care.

Language Matters- and the relevance of it is close to my heart- and delighted that this piece of work is in its final stages- many thanks to Anne Cooper, Bob Swindells, Cathy Young, Rosie Walker, Jen Nash, Sarita Naik- and many others. I have been much impressed by the willingness of all relevant diabetes organisations to engage in this piece of work- and glad its not taken us years to finish this. Hopefully out soon- but in my opinion, its a fundamental shift in culture as to how we interact with those living with diabetes- which holds a major key ti improving care. Let's see!

Treatment of diabetes patients via ambulance crews and paramedics have needed an upgrade with the existing guidelines being perhaps a bit out of date- plus protests to that effect has been noted. Again this hopefully should be complete soon too- and fingers crossed, helps with improved care- and maybe even reduce admission rates to hospitals across the country.

Another piece of work hopefully concluding soon is a nationally agreed pathway for access to diabetes technology- being developed by some of the brightest minds in Type 1 diabetes care- along with those living with diabetes. Hosted jointly by the NHS England diabetes team and Diabetes UK, hopefully this will help / aim to standardise access - as well as look at issues of procurement, education of staff etc etc. A HUGE piece of work- but the early signs are good- and much grit and patience will be needed by the collective to achieve progress on this in present times of financial strains and competing priorities.

Other bits of work -over the next few months will look at role of pharmacists, dieticians as well as mental health side of things in diabetes. 
Throw in discussions and mulling over Out of Hour support across the country, discussions around Type 2 diabetes education in digital context, some educational material specific to south east asian population and accreditation of existing education programmes…and we have a fair few things to keep us all busy. The work around reviewing hospital services in diabetes begins in earnest too from May (some pilot runs end April) - and hopefully all of this will come together to keep driving quality of diabetes care up.

Another update perhaps in July on how much we have delivered on the above and what subsequent plans are. As mentioned at the beginning, there are a few other bits - and hopefully we will have some further good news to share. 

Till then? Wish us luck- and thank you to all for the support and kind words- which makes it all very worthwhile x


Friday, March 30, 2018

100 million




Policy role can be much fun...it can also be very troubling...making judgement calls which may affect many is never easy- and it does always make me wonder- how much benefit would direct patient involvement help? I mean- lets get this right- absolutely a must, we all should do it...but how much would that help if- say- there came the question of allocating money to services? We at NHSE work extremely well with Diabetes UK- is that seen as enough?
Before you get the usual suspects all frothing at the mouth at the very thought of "questioning" patient involvement, lets make this clear- this is me thinking aloud- something I have even mooted discussing at a few national events- but most folks around me have fudged the answer- so for the sake of debate, why not? Who knows-may even hold an open day to have a chat about this?

So lets say- hypothetically, we have 100 million quid for diabetes care. 100 million you could invest to improve "diabetes"- as a whole. Sort of similar to the 40 million we got last year- and have for another year. This time around, we looked at evidence, looked at Return of investment and put it in 4 places- broadly covering safety; foot care; education and treatment targets. Lots of kind words- but there have been criticism too- why not more specifically for technology, why not for pregnancy care, what about renal care; what about Eating Disorder services etc etc etc....so, lets flip this, if say hypothetically we did have 100 million quid, could patients help or even directly advise where to allocate that money?

Or would they be dictated by their own niche? Would a person living with Type 1 diabetes be focussed on their need- or would gracefully give up, say access to technology, for better provision of prevention of Type 2 diabetes? Or would the whole community turn around and advocate giving that amount to social care- with socio economic divide being linked with poorer outcomes? Or would we want to divide it up based on proportion? 10% or 10 million for Type 1 diabetes- the rest for Type 2 diabetes. I mean, the simple maths of getting Continuous Glucose Monitoring to even 10% of the 10% of those with diabetes is nearly 100 million alone! Or should we give it to primary care for better provision, access, training? As some clever clog said recently, give it all to the  diabetes community in personalised health budgets- and it will be fine. Is that the answer?

Such questions intrigue me personally- simply because its very easy to be swayed by one's own bias- and its the same with all the specialists I meet too- very few (ironically most of them are primary care physicians- there's a story, huh!) actually would say something broad -beyond their specialist area. For some, technology is all that matters, for some, its all about safety, others, its foot care...come to think of it- if we have so many subdivisions within one specialty, how easy or difficult is it when you extend the reach of that? The argument that those who live with it- know more what to do with the money also falls a bit flat- when say a Type 1 diabetes person has to make a call over wider budget of diabetes- lest face it- their knowledge of living with Type 2 diabetes is the same as mine- nearly non-existent. Tricksy, isn't it? But I would be fascinated to see what top priorities those living with diabetes choose and what are the ones evidence says should be. This time around, we think we got it right- albeit as ever some would disagree but if there was a next time, this is a debate worth having I reckon

So to those living with diabetes or caring for those living with it, have a think- could you set aside your individual niche or bit and make a call for that 100 million....and how would you feel if your favoured bit didn't get the money that you felt should have? Would you like others making that decision on behalf of you?

So- go on- if you can- post some answers. 100 million at your disposal- where in diabetes care would you put it? And would it be an idea to have a fun debate around this- patients and policymakers- along with specialists & primary care? An open forum....would you be up for that- or should we leave it to patient organisations to have that debate? So many questions- but just an individual thought- which I thought would be worth mulling over in a blog. Who knows- some of your ideas...may even become policies.... 

Sunday, March 18, 2018

One Tribe...

This year I walked into the London EXCEL on a Tuesday morning with interest…the annual diabetes conference….was it to be more of the same or something different? Diabetes has had a reasonably good year- especially when you compare it to other areas- be it in the extra money to improve care, spread the type 2 diabetes prevention programme, a move into the sphere of digital technology…as well as on the background of studies such as DIRECT- its been interesting times. So how would that translate into on the ground- how would the general health care community feedback on that?

Tuesday started with the trainees day- and I have rarely been surprised at the ideas our trainees can bring to the table- if "Allowed". Tuesday was no different- a particular session where we asked trainees to come up with a few ideas to improve safety was fun along with being informative- and the plan is to take a few of those forward-with the folks who formed the ideas- involved in it. Who knows where it takes us- but the issues around blood sugar alerts to flag potential safety issues or indeed increasing better access to preconception advise…well, we have talked about them long enough- maybe with trainees involved, we can do better or at the least, improve the variation on this.

The next few days- to be honest- were a blur- and at the end -mentally, I felt fatigued, tired..yet perhaps quite happy.
A few things stood out- Simon Stevens, the NHS CEO announcing 40 million £ to continue the work done so far in 2017/18 was a big plus- but more poignant was him calling me and Jonathan Valabhji on stage to sit next to him as we took questions from the audience. A very clear signal of intent- as well as support if there ever was one- as well as showing the relation the diabetes team shared with the top tiers of the NHS.



Other things were moving things forward as regards the relevance of education- and a big shift towards the community backing initiatives being done so far- and further appetite for more. Talking to many companies as well as individuals, it was clear that many were keen on also looking at variation of professionals education- for example in the field of technology- and it was much pleasing to see all concerned happy to work as one pack-rather than as separate entities

Kind words from luminaries such as Andrew Hattersley, Gerry Rayman, Roy Taylor, George Alberti, Stephanie Amiel, Kamlesh Khunti, Melanie Davies et al stood out- and perhaps the biggest vote of confidence the national diabetes team needed from a professional perspective. It was also personally pleasing to hear the words- sometimes, it helps to heal the wounds this job creates too. A hug from Pratik & Emma meant a lot too- sometimes friends don't need to say much more.

It was a privilege to be able to introduce Mayank and May for their respective lectures- inspirational leaders whose never-give-up attitude sums up their successes- and more strengths to their arms too! Hope they inspired another generation too- at the end, its not just the money, the algorithm or the policy- its the drive of individuals -open to working with those living with diabetes- which opens the door to success too. A workshop- standing in for Jane Speight- along with Bob Swindells was fun too- as well as giving the #LanguageMatters group information we can use for the national document in the pipelines.

And then of course, there was the #DUKPCInsider event. I won't say much about it- simply because to me, this is fundamental to me learning- as well as improving care. Whether it be the TAD events or Rise of the Machines, working with those who live with diabetes has been a key thing for me- and part of my professional development. It was an honour to be invited, to talk with Chris Aldred aka Grumpy Pumper- as well as take questions from the audience. To me, the strength I get from encouraging words from those living with diabetes- negates in a flash any negativity from professionals or industry.

Finally? A big personal thanks to Chris Askew and in his team in Diabetes UK- who have landed this conference with the added insider day. There indeed was a good buzz- and the right challenges seem to be being laid to all. There was  a lot of positivity- and hopefully people will take that back home- and renew their battle to improve care. And we, in NHS England Diabetes team- are here to help. Just ask.

Will leave you with a few links of interest:

1. Technology & Diabetes: Link to best practice as regards Insulin Pumps etc:

https://abcd.care/dtn-uk-best-practice-guides
Under Emma Wilmots guidance, I expect the DTN (Diabetes Technology Network) to be a game changer as regards technology access

2. Nurse specialists in Diabetes: A facebook group set up by Amanda Epps from Medway for Diabetes Nurse specialists- feel free to join and exchange ideas:

https://m.facebook.com/groups/1861683600548893

Thank you to all who made time to chat- and apologies to those who I couldn't give much time to. We take back home much to cherish…we must carry the momentum forward too.
We must be able to work together, channel all the passion we have- whether you are a doctor, nurse, carer, pharmacist, living with diabetes or in any way connected to diabetes.

And this year? I got the feeling, we just might x


Sunday, March 11, 2018

Balance of power



The jostling for power is probably one of the most fascinating things being played out in the world of health. Science, technology, anecdotes have collided in a most interesting manner- and if you throw in the usual hierarchy of healthcare, the cocktail is complete/

There are the academics- for whom their science is rigid, the randomised controlled trials being the one and only barometer of success; there are the super centre specialists for whom the bubble only extends to their own centres, their own selected patients, there are the decision makers who hop between being "totally supportive" to "not really" for evidence based material- based on the cost involved; there are the healthcare professionals who would like to have their bit funded the most- above all- as obviously their own speciality or profession is THE most important above all....and finally, there are those who live with X, Y and Z.

Lets face it...very rarely do the policy makers or indeed academics who create the studies stand up and face the patients face to face. Rarely are decisions to fund- or not- made with a patient in the room- ensconced securely begins a layer of bureaucracy, decisions are not that tough to make. Public engagement events to explain why X, Y or Z can't be funded? Rare as hens teeth. Mostly due to lack f cojones to be honest.

In the midst of that all, the landscape is slowly changing- and its fascinating to see it develop. Maybe its a generational thing but folks are starting to question "Why" a bit more. Reasons such as "I am a Professor and I said so" doesn't wash much- and quite rightly too. People are starting to make their own innovations, their own adjustments to their lives and asking the profession and system to fall in line. Its a bit like any disruption...started with a few rabble-rousers- ignored conveniently by the system...but as their numbers and voice have grown, the system is being forced to listen. Whether it be a policymaker, healthcare professional or industry, there certainly is a subtle change in the air.

The trillion dollar question is as a healthcare professional where does our role sit...is it to resist, deny those who live with a condition what they feel they need using the shields of evidence or do we encourage disruption? Or do we help them to change the paradigm of the system? My experience in 2 years of doing this is that evidence is an interesting term- used differently by different people- to justify the reasoning for inclusion or exclusion- based on their personal prejudice or politics.

Personally. I am all for change...mostly because the rigid way if "we know best" ain't seem to be working that well per se. We deny folks a technology, they find a way around it; we restrict them to diet X or diet Y, they find out what works for them and use it- more to the point, they then cascade that info to others- whether we like it or not. My fundamental role is to pass on information, ensure safety is maintained and at the end of it all, id the individual uses something that works, surely that's exactly why we do this job? So I am all in favour of guiding such individuals, encourage their own innovation...why indeed not? If it works, why indeed not.

I suspect at the end - it does boil down to power- how much one is prepared to "give up"- or whether you see this as a power thing at all. The power thing has always bemused me- and in spite of what impression social media may give you, Consultants have, still, a lot of power in the system. The question is whether we use it to facilitate what patients need - or to maintain the status quo of hierarchy. My personal experience and tip after 10 years? Use it the right way...the rewards are far more. Using it to obstruct patients or what they need because of what a trial- not applicable in real life- showed is silly. Or simply just delaying the inevitable.

In any business, consumers drive products....health is just about starting to wake up to it...times are changing...the power base is indeed...shifting.

And may it continue to gather force and pace. Amen.

Tuesday, February 27, 2018

Letting go...

I will be honest…the last few months have been tough. And at times it has felt very lonely. The barbs, the comments, the critiques, the arm chair opinions, sometimes simply the blunt brutal comments- mostly to do with an effort to bring a new technology to the NHS has hurt. I have smiled- in the most but its felt lonely. And there have been evenings when I have sat down and wondered whether this is all worth it. I tend to have a casual approach to most things…but even all that can wear thin after the umpteenth shot across the bows from yet another fellow professional or expert. If the intention was to hurt, it certainly left its effect.

The saving grace in all this has been the diabetes community. In tough times, reading back some of the DMs or emails from someone I have never met has made me shake off the feeling of "why bother", put that flak jacket on one more time, battle yet another opinionated professional or manager within a CCG or even NHS England. And to all those who have asked why I embarked on the road to host an event which basically was encouraging the "rebels"- that pretty much was the reason. On Saturday just gone by, amongst many of those living with Type 1 diabetes, I felt at home, I felt happy, comfortable- and not having to do most things with my shields up, having to be wary of what would be interpreted in what way…I felt amongst friends. It perhaps is a telling tale of the NHS that in my last 18-20 months of doing the national role, the obstructions, the resistance has come from fellow NHS colleagues, not from those living with diabetes. Make of that what you want.

So Saturday was all about folks who were doing things…differently. I won't go through the details but if you fancy having a look at their presentations- have a peek here  Its -simply put- a different world- and something which could fundamentally change the game as regards Type 1 diabetes care goes. This is disruptive innovation at its finest- flipping on its head all conventional research, science and lobbing a stun-grenade into the world of diabetes technology. And the world is waking up to the concept of "OpenAPS"…no idea what that means? Have a look- here and take your time to absorb the level of disruption this can and is causing in the present world of Type 1 diabetes.

Is it for all? Nope. Could it be a game changer for some? Yup. The trillion dollar question is what we-as a system- do about it. Wait to see what happens? Wonder about the regulatory consequences for us rather than the patient? Or step into the breach and try and give some folks what works for them? Its clearly shaking up the industry- with companies looking at it; JDRF committing to it….could this be a big movement in science- or do we stay confined to what an RCT told us- and deny those who live with diabetes what THEY have come up with? Can we - or should we do that as people not living with diabetes? Do we become self appointed vanguards and make rules up to obstruct? Or do we do so more to protect ourselves rather than help the ones we undertook this job for?

It was fabulous to see all the relevant companies at this meeting- as well as the leading charities- and I am eternally grateful that they came on request. Its not an easy space for them to work in either- but they were there- and that is a big step forward for us all. It would be a travesty not to pay a huge amount of acknowledgement to Ben Moody and his super team at TechUK- without whom this wouldn't have happened.
And of course Tim Street- his energy is infectious- and frankly- I cant understand much of what he says- but what I do know? He knows how to look after himself- and he is dead keen to help others- and in my book? That deserves utmost respect.

Of course- who can forget Dana Lewis- all the way from Seattle- now there's a maverick and a half. I sat in silence- listening to her talk 2 days on the trot- and I had goosebumps listening to her drive and passion. I am honoured to know her- and be an acquaintance and who knows what the future holds? For now? A big thank you from me- you touched many hearts and inspired many- do come back again.

Finally? To many healthcare professionals out there…fear less- and perhaps worry less about "patients taking control". Trust me- its a good thing- it makes our job easier. Our job is to keep folks safe- not be vanguards of what they can or cannot have. If we genuinely want to improve diabetes care, self management is where it sits- however it is achieved…whether it is via an App, simple peer support or folks making their own algorithms. Be ready and feel comfortable about letting go; guide them as much as you can….the long term benefits are far more rewarding than anything else.

"Word cloud from "Type 1 Diabetes: Rise of the Machines"


Saturday, February 17, 2018

A Viennese whirl

Vienna. A short hop from the UK- and an effort to get some continuous professional development attending the Advanced Technology and Treatment for Diabetes.  I attended this event- just to get some education update- as well as take an overview from a policy point of view. Whats feasible for the NHS? Beyond the shiny tech, beyond the dazzle and dazzle, where in sits the technology which may benefit the many, not the few?

I must say I came back with mixed feelings- as well as reinforcement of some views I have held for a long time. To begin with, a slick, well organised event- and a pleasure to meet Tadej Battelino who along with individuals such as Moshe Phillips have been a driving force behind it. A great event to showcase the latest advancements in technology and the differing approach many other countries have towards it. The bias towards data we may or may not have, the little silos we work in, the strong beliefs we have….they were all on show- whatever be the country.

For me, it was a bit beyond that too- what- from a policy point of view- could work? Some of it felt like a technological world beyond the scope of many; some of it felt like the opinions of a few who lived in a bubble…a bubble of looking after certain groups of individuals, a bubble where other issues rarely pervade. The inherent strong views and "camps" of technology were stark- whether as a clinician one favoured Dexcom or Medtronic- whilst the aim perhaps should be to look at technology as a whole. We all benefit I suppose if we are not stuck in "camps" but hey ho, such is the world we live in. I also looked at, got told, was informed many times over about the importance of Continuous Glucose Monitoring or as as the parlance now should be "rtCGM".

Then there is the bigger picture of the world beyond Type 1 diabetes- or even diabetes itself. In the bigger context of things, and as someone who does work with patients of all types (yes, MODY too!) we perhaps forget context. Lets do some simple maths for you. I get pointed emails/tweets suggesting how rtCGM should be made available to all with Hypoglycaemia unawareness. Ok, thats about 15-20% of the Type 1 population- thats about 50-60 K folks- at a pop of £3K / year. Rough maths- but thats about 150 million£/ year. Take a pause. Yes, thats 150 million £.

And I haven't even added the staff cost to it. At the moment, we have about 5k folks on this tech in the country- so we are ready for an increase of that number? In a system where we are scared of patients actually taking charge? I mean I haven't even added up the numbers for those who are pregnant- as CGM would be fab for them too- plus to put that approx 150 million£ / year into context, we -after a serious degree of "making the case" got 42 million£ for the WHOLE of diabetes care in the UK. And Type 1 diabetes is about 10% of the whole diabetes population

Lets even say we make the argument- as the benefits all "bear itself out" in the future- but answer me this…if we did make the argument for 150 million£ with the department of Health and NHS England…did you want to invest that into better safety in hospitals? Or go wider- and look into better lifestyle choices? Or mental health? Or better community support? Or more practice / district nurses? Or better managers? Or better social care? Or improve inequality? Not easy, is it? When you start looking beyond your super-centre or your own super specialised silo of work…demanding that money doesn't look as easy, does it? Neither does it when you are a patient champion or an expert patient…do you champion your own "bit" or do you make tough choices as the elderly frail person at hoe needs better social care- and you give up on your championing of that "wonderful tech" for the greater good?

Tough call, isnt it? Hurts a bit too, no? And how fortunate are many that these choices are not ones you have to make. That role falls on the policy makers- and the burden of that we live with too. So shall I give you the good news? The good news is that the tech access is possible- some of it will depend on companies who also need to have a reality check about their prices and where it sits as regards the NHS. Simply saying we have a premium product and thus our price is premium isnt good enough- its a balance…if you do want to genuinely help patients, it cuts both ways. There also- is perhaps - just about enough money within overall diabetes budgets to do much more than what we do- and yes, I include access to 670G pumps, G6 sensors or whatever else is the latest tech in town

The not so good news? I am not convinced the UK is ready yet- to make that level of change. Whether it be clinicians, industry, charities or patient champions/experts, there needs to be much better unity than at present- lot less sneering, lot less siloed thinking, a whole lot less of "we know better than you"and a lot more of "lets see whats feasible"-rather than "how dare you don't do X,Y or Z". A long way to go yet- though a collective is slowly starting to build. It will be interesting to see where the next piece of work takes us. The whirlwind trip of Vienna was fun- but it was a mixed one too. As a clinician, the technology was exciting. As someone in a policy role, it was less so- with more of a worry about lack of coherence or perhaps unwillingness of super-specialists to look beyond their own views and thoughts.

A final thank you to the ATTD folks for their time and effort - lets see whether next year, we can share some stories of success from the UK regards uptake of technology. THAT is our challenge. Cos the best tech isnt the one which gives us papers in a journal or tick boxes in a CV but the ones which improves the life of someone living with the pathology.

We shall see.

Sunday, February 11, 2018

Being there

I have been asked this question a fair times now in the diabetes world- more so recently- and I suspect bar those close to me, most folks won't know the answer- and opinions are formed based on what they see in the public persona, social media, blogs etc.

The question has been simple (or in some cases, its been more of a statement..well ya know what the world is like nowadays…the smorgasbord of instant opinions and all that!) -"Are you a Libre-Man or a CGM-man?" Forgetting the basic fact that nowadays they are deemed to be the same thing-yet on a paradigm (not by me, I MUST stress!) its  silly question to start with- but I suspect warranted to an extent by my very public and open support for getting this technology to people with diabetes. Its also come with the usual conspiracy theories…"He must have been paid, No?" / "Does he have shares in Abbott?" / "He must be lining up a job with them"…I won't rehash all the reasons here- but it maybe worth all those characters taking off their tin foil hats for a moment. Nope- not paid, didn't have any of my research or MD/PhD work funded by them, nor do I have shares or taking up a job.

Do also please give me some credit and don't insult my intelligence to that extent- if I wanted to make money off this, I wouldn't really be so public about my support for it, would I? I have even had some clever clogs whispering "he is close to industry"- it makes me chuckle when you see that view from even within NHS circles- someone must have forgotten to pass them the memo about the  "NHS drive to work closer to industry" or even the role of AHSNs to work with industry to accelerate innovation". Ah well- a blog on that some time soon too.

So the answer to the question is….well..neither. I couldn't care less about whether its a Roche CGM or a Medtronic super-pump or a Dexcom whiz-product- or for that matter Libre. I don't think any of them are the panacea or something I must favour..if I believe in 1 thing- its about something that is more ethereal- its funnily enough, not a product.
Its something I was taught by some of my best tutors in life…and it ain't a super tech. Not some fancy insulin either…so let me share a personal view. I have been a Consultant now for nearly 10 years now- and I have had a few "success stories"- none, I repeat, NONE of them down to me or a whiz-tech. A fair few of my patients are active on social media- they can verify- but I have never done a clinic in my life offering someone a Libre or a CGM as a panacea. On the contrary I have only 1 simple rule of doing diabetes care..whatever be the type. It goes as follows:

"You don't have diabetes; You don't live their lives; You don't have the same socio-economic situation. Thus, you have no right to judge them"

Thats pretty much is it, to be honest. I talk a lot about Type 1 diabetes- but am equally passionate about Type 2 diabetes- about working for the population (Super Six Model-remember that?), about treating the individual, de-prescribing where needed, keeping the frail elderly safe, using the appropriate drug or diet what suits the individual- not my personal preference. Its stood me well- and I plan to continue to do so. Its not about the Libre or the CGM- its about being a guide in the persons life- providing them with the tools they need- whether that be education, peer support, just a kind word- or sometimes? Just keeping quiet.

The reason for championing Libre has been the principle of moving the paradigm from finger pricking to the next phase of innovation. I couldn't care less if it was called "Mickey Mouse"- or produced by a start-up company. For me, its the principle of shifting the care paradigm to the next phase- and that extends to every part of diabetes care. If we genuinely want to improve diabetes care. we need to be nimble, flexible, accept that what controlled setting such as trials tell us is not the gospel- but guides at best to help us. That we may need to rethink our strategies such as providing education only by face to face means -is the only way or that it an only be given after 6-12 months after diagnosis in type 1 diabetes. Lets face it, beyond a few chosen centres of excellence, diabetes care in the main is about "You have diabetes; sorry thats a bit shite; here are some leaflets; An education programme on a set day: see you in 6-12 months". The person is left with their diabetes…alone, looking for direction, friends, support- but we as a system resist change…because? Evidence says we must do it in only 1 set way- damn the fact that not many are coming to the protocolised versions of education sessions or clinics.

So- no- I aint in any camps- fact of the matter is- past the Libre- I am also starting to spearhead the CGM work (I bet the next query would be why I am supporting CGMs and not education!)- as much as working on individualised targets in the elderly- or championing different style of education programmes. They ALL matter to me- they all mean improving self management for those living with diabetes, keeping them safe….its not that tricky - we don't need to fit ourselves into boxes, we just need to see ourselves as support for those on their journey with diabetes.
I appreciate how tough that is as a professional, how tricky it is to let go of that control (thats not what our training teaches us)- but all I can say? That is what brings the best results- for what its worth- 10 years of being a Consultant has taught me that- as have my patients.

Go on- do give it a try. Just try and be there. It makes for much better diabetes care. And oh- easy on the conspiracy theories. Much better time spent on improving diabetes care. Honest.

Sunday, February 4, 2018

Perspective

This blog- for the first time, I will take this opportunity-to even the few who read my blog- to consider something-just as a favour.
Its for something which has made me think. Made me think of perspective. Made me think in the context of the job I do, the specialty I work in, the efforts I try to bring regards improving care- and more so, in the context of the blessed life I live.
Working in the NHS, a system which for all its flaws, purports to give folks what is needed irrespective of their social status, ability to buy etc; a system which has also given me a comfortable life, a good working condition, some fabulous colleagues and he golden opportunity in a national role- to make some difference, somewhere.

If you find a moment, do spare some time to have a look at "Spare A Rose". Much kudos to "Grumpy Pumper" aka Chris Aldred for drawing my attention to it- and in my role, the least I can do -apart from contribute- is to draw some attention towards it. We live in a country where insulin is "free", care is "free"… we debate, discuss, jostle, make snide remarks about the ability to get FreeStyle Libre,split hairs about evidence, post code lottery... we rail against the NHS for not providing all the latest technology…yet …well, have a look at the website- if you can.
In many countries, many children are not even able to access any insulin. Simply put, a life saving drug in Type 1 diabetes that many can't get.

A sobering thought- and perhaps also a time for perspective. A time for taking a moment and thanking our blessings that we -still- live in a country- where this rarely, if ever, enters our consideration. So if you can, have a look, take a moment- and see if you can contribute something.Beyond the bubbles of our world, there exists a vast one where healthcare isn't "free" for all- and if we can, even in a small way, the contribution would be most appreciated.

So- if you read my blogs, find my rants entertaining, then for this Valentines day, try and spare a rose. A simple gesture- but could help in perhaps saving a life-somewhere. I have donated- would be grateful if you could consider the same.

Thank you x

#SpareARose

Saturday, January 27, 2018

Murky




This week- no surprise- a blog to reflect upon the Bawa Garba case. This isn't one to discuss the intricacies of the case (its been already played out widely in the media -general or social) or the "closing of ranks" -as some have suggested- but a personal viewpoint from someone who has been in the NHS for 20 years now.

To begin with, my views as a parent. Whatever the rights & wrongs of this case, a father & mother lost their child- and nothing in the world can equate to that sorrow- unless one has faced that sort of tragic circumstances. My blood turns cold at the very thought of even the slightest harm to my children- and simply put, there is no words to comfort them enough for their grief. However much time maybe a healer, the scar will remain- as will the fact that errors contributed to a child passing away.
It also makes me wonder whether, we as a system, have contributed to the whole murky saga too. Past examples of patient harm- have never quite ended up anywhere much- beyond "We will learn- and move on". For the individual who has lost a loved one, its perhaps all vey good for someone else to say "we are looking to learn"- but the physicality of seeing an individual who you believe has caused the ending of life to your loved one, continue working…sucks. Its not unnatural to say "accountability needs to lie at the doorstep of someone- not the ethereal system" . I suspect those of us who- fortunately- haven't faced anything of that magnitude may not realise that sometimes in the cold light of day- the passion is likely to be ignited more when the harm is your "own".

Then comes the reaction of some professionals towards those who raise issues. I will give you the example of James Titcombe- some of the vitriol he takes is pretty..well…special. Comments such as "using his child death to make a point" angers me, annoys me- and belittles us many folds over. Cue? Entrenched camps where strong patient voices- driven by personal hurt- clash incessantly with many- strengthening the confirmation bias that professionals are just out to cover their own backs- losing out attempts at rational discussion. For many, there has been-frankly- no closure.

But none of these irk me- my views above are reflections of what I see- and part of me understands the angst. What irks me about this whole thing are a few other bits- and thats more about us, as the NHS, than anything else.

First- the factor of responsibility. However you want to couch it, this junior doctor was left high and dry by her Consultant. Period. The Consultant was aware of the pH and Lactate of the patient, wrote it in his notebook but decided not to review the patient as he expected her to "stress" the results.
I don't even know where to begin with this- but frankly? That irks me. I have always maintained that the Junior doctor strike/ contract issue was a reflection of something much bigger, a lack of support, many instances of seniors not standing by their juniors- and here we have the tip of the spear. Its little things you know, annual leaves, unjustified demands from management, making sure they are safe….and then the culture gets further worse- and there we have it.
Then there is the issue of corporate responsibility- how does any of this not reflect on the Trust and Execs/Managers at that time who allowed such conditions to appear- well, another bit which makes me shake my head. Basically, when it came down to it- and the system needed a "head", it was the junior doctor- someone who could be sacrificed as collateral damage.

Second- the issue of race & colour- that uncomfortable fact. Many many papers etc have been written about GMC convictions and how things are judged- and the perceived bias. Would this case have been looked at differently if the said person was locally trained & white? Its an uncomfortable question which the system needs to be keep asking- but my belief is Yes- it would have been.
Lets give you a simplistic example- a liver surgeon has a bit of lark, plays God- and brands his initials on a liver- gets a 12 month community order and a fine of 10K. Different case- but I can bet you if that surgeon was non-white, he would be doing a bit more than that. I say that from personal experience- the system struggles with anyone who doesn't fit the mould, the judgement of "success" or " failure" is different- however many powerpoint presentations or committees you create to make yourself feel a bit better.

Third- the long term implications. I have always debated here the issue about whether being a medic is a vocation or a job. If its the former, how far does that take you? How far would you cover- how far is that rubber band of safety? How far do you keep trying as "otherwise who will help the patients?" This ruling will challenge that more- and frankly? We are poorer for that. I may smile at their vocational drive- but privately I admire them- and appreciate them for that extra they do.
The impact on personal reflection has been well rehearsed already- and that irks me. A bugbear of mine is improving insulin safety in hospitals…this drives a spear through that endeavour…with a big part of this taking away reflective practice in a safe environment. It drives defensive medicine further up- the system is already creaking with the unnecessary tests we do- "just because" or "what if". This now changes that fact…lets be honest, you would rather organise a CT scan- rather than face the possibility of missing something which could compromise your career, yup?

A murky place indeed- much of our own doing- and some of it the GMC bid to appear muscular- when in the past, they and the NHS have been accused of being far too lenient to medical staff in the face of patient errors- its a crying shame that the pendulum swing has taken us to this place. It irks me especially when there is a such a strong commitment to improve safety for #diabetes patients within hospitals from our end.

If there is any silver lining to this cloud, it perhaps also bares some uncomfortable truths to us as a system- the role of seniors, the issue of race- and the culture of safety we love talking in aviation terms.
Ask any aviation expert, someone would certainly be accountable- its unlikely it would be the first officer flying the plane. The NHS just got a bit more murky.

Sunday, January 21, 2018

Variation



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:

Blue: Approved
Orange: Not Approved
Grey: To Decide

Link: (Courtesy of Diabetes UK):

https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring





Friday, January 12, 2018

Lost?

You can sense the despair in the air...you can literally reach out and perhaps even touch it. Enough has been documented about the sheer incessant pressure within hospitals, the ramp up of the noise in the media, the chatter on social media...you can't escape it. And with it has come a sense of inevitability about the cycle- yet perhaps a bit more tighter each year. The tough times brings forward a discussion of "how do we solve this problem?" along with the sharp divides of opinions, the same rhetoric of what may or may not work, the health care professionals saying "its the worst ever" and some sticking to smart alec comments about what should be done.

I mean...is it the worst ever? Or do we healthcare professionals harm our own cause by saying so each year- and we get to the "crying wolf" phase- where we get ignored when it actually is the worst ever? I don't know- but facebook posts from former years can be educational...it appears most winters, we struggled. Personally, how bad is it? Let me just say after a long, long time, I was reminded of my days in Kolkata...the sheer volume, the look of desperation in the poor doctors or nurse face...the annoyance that they couldn't do better. Heck, I even discovered places in the hospital I didn't even know existed- or at the very least, never expected to visit as a Consultant Physician. Problem is caught in the sheer white heat of social media, the message does get the counter of "here we go again"- albeit unfairly. Or at least it certainly feels so. It feels different for sure- something has to give soon.

Then there is the inevitability of the debate of "What next?". Take your pick. Hypothecated tax? Immediately appears a raft of idea why its a daft idea/scourge of the world/an evil plan to destroy Bevan's legacy. How about a cross-party commission? Well, that isn't good either- not all parties like it- because lets be honest, why get rid of a political football that has served many so well for so many years? Ok- lets ramp it up- how about a Royal Commission? Pfft, they say- it takes too long- long grass issue. Well, that's really funny and makes me smile. About 2 years and a bit ago, was part of a group which asked for it. Response then? Oh-it would take 2 years- and the NHS "doesn't have 2 years!!" Looking back, it seems we have had a lot of chat, a lot of political commentators have opined, but what has happened as regards funding the NHS question? Fanny Adams. I don't know- maybe, just maybe..if we had done something 2 years ago, we may have had something to discuss, implement, debate etc. But nope, heck, some tin foiled hat people even said we were pushing privatisation. Well, blow me over. 2 years later, welcome to GroundHog Day.

Then we have the debate about structures and funding. The main opposition-for example-to an Accountable Care System seems to vary between- oh its American- that's all evil OR we possibly can't integrate services as it opens the whole service to privatisation. So are we objecting to the structure, the concept or do we want to ban private companies from bidding? Who knows- but integration / working together sounded like a good thing. I have an idea- lets give it a different name...how about National Health Service?

Then we have the "appeal for funding". An ask which each year gets even more....well...peak bonkers. We all know where extra money "should" go- social care, primary care, better prevention health, better community support....where however it does go to? Acute Trusts bottom lines, PFI bills, locum bills, anything to do with improving "flow" with a few hand downs to the other areas which would be more useful longer term....total net effect of using the money? A big zero. A plaster- till next year- when "its the worst ever ever ever...so can we have some money please?" To make it peak W1A season, the ask is led by NHS Providers- the same organisation which was one of the few bodies to support imposing a contract on junior doctors. I may have missed their apology for getting that wrong- but all the money in the world is no good if you don't have the staff. The junior doctors issue was far more about money, it was about morale- it was about the future- it was about a workforce we could ill afford to lose.  It was about standing by your workforce, not disrespecting them...it was much bigger than a pay dispute.Combine that with Brexit, the uncertain economy, an opposition which is level in the opinion polls with the ruling party...and we are a bit...lost,aren't we?

Normally, I always like to say something upbeat, something positive. I am not sure I do about this whole mess. The narrative seems to be lost between - we need more money/ Corbyn will save us/We are the best in the world/Stop Privatisation/ACS is the Devils spawn...all of this means very little when you are standing in the middle of a Medical Assessment Unit and thinking..."This can't be right"- or looking at your duty hospital manager and thinking ..."Dude, you need a hug".

So please- all you clever people- try and come up with a coherent plan- because I am not aware of one- and neither can I see anyway out of this rut- unless we try and get our heads together- and perhaps, just perhaps be open to suggestions beyond our firmly entrenched position.
I don't care what system it is- but I would like to provide a better service than what we are starting to at the moment.

Till the next year.