Wednesday, December 13, 2017

Diet Wars




It's unquestionably a sign of our times...the lack of mature,sensible and calm debate. The world of health is no different- and noticeably evident in recent debates about the relevance of diet. The views are absolute, there is no budging...and even if that be an admirable trait in some eyes, what hasn't been edifying is seeing the unfettered vitriol which comes with it.
The debate about low carbs and its efficacy in helping with diabetes (yes, all types) has been going on for some time...but recently seems to have slipped into a different gear with the publication of the DIRECT study. That study has been more about low calories followed by primary care based support- rather than low carbs- and the data is there for anyone to interpret. What however has been fascinating to see is believers in the science of low carbs use exactly the same tactics that they have, sometimes rightly, accused others of. The tactic of sneering at research which doesn't fit a view, the view that it needs to be discredited, rather than be seen as yet another option for the average Joe on the street.

Now I will be honest- as many advocates of low carbs will know too,I have no issues engaging with anyone- and I have- whether it be with Aseem Malhotra, David Unwin or indeed the folks at diabetes.co.uk  such as Charlotte & Arjun. I share cordial relations with all- as I see its potential and I also see that it may indeed work for some indeed. By the same token, I also have met Roy Taylor and Mike Lean, the brains behind the DIRECT study in an effort to understand what possible application can be brought to bear in real life- and perhaps seen as yet another option. By the very same token, I also met with the British Dietetic Association too...because give or take? They are all allies to me - giving ideas about what may help the population. As I would with anyone who brought another diet to the table which they believe will improve population health.

There is however a need for a reality check too. Albeit perhaps tongue in cheek, David Oliver makes a very relevant point about the #Carbsnatchers of NHS England. In a policy role, there is a need to strike a balance between what can and should be mandated (smoking in public places is a good example) and what interferes with personal choice. Is it about mandating or is it about giving people the information- and then letting them choose? And where does socioeconomic deprivation fit in with amount of carbohydrates in your food?

Either way, a rational debate is needed...simple mudslinging is likely to achieve little. Comments such as "if you don't eat low carbs, you will have your feet amputated" ...well..I am not sure who that actually helps.I have never been a big fan of shroud waving. There needs to be an acceptance that there maybe folks who consciously choose NOT to adapt a low carb or low calorie diet- that could be an individual call or driven by economy. It's not right to judge others when you don't live their lives.And I have had my share of abuse- as sizzlingly racist as they can get- specifically from the low carb lobby. What has fascinated me is the passion that drives such people to send things like that. I tweeted about it...condemnation from the big guns of low carb lobby? Miniscule - I saw it as tacit encouragement to the hordes...the problem is..if that's how you engage with national policymakers, then the chance of impacting on policy...well...minimal is the word I am looking for. What drives individuals to champion something to such an extent that it crosses all threshold of decency, ignores any science, feeds into the ethos that experts either know nothing or just corrupt? What creates this aura of being self appointed vanguards of public health...I mean , if you want to impact change, why do so from the outside? Why not apply to Public Health and join? Engage in a rational manner and make the case?

A personal viewpoint, if I may? I read regularly and would say am a reasonably informed person. So what diet I undertake to reduce my risk of type 2 diabetes should and is down to me. I have always loved my food and desserts but as time has passed, I am more aware and conscious - but that doesn't mean I have given up on things I have always loved. It's also about what I can afford. It's also about what I can sustain and feel well with. It doesn't matter if YOU feel great being on any new diet, what matters is how I feel on it after trying it. It's about perspective.

At a policy level, we are indeed looking at all the evidence and perhaps a change in guidelines will happen- engage with the process in a sensible adult like fashion and there are enough people willing to listen. And as much as it may be surprising, no, there isn't some Bond-villain style conspiracy going on. You can't impact change by simply being reactive and angry- it's more about winning over people, not continuing in a bubble of folks who believe the same.

And genuinely? If you want to improve diet and create a healthy population, we should perhaps concentrate our efforts on access to the right food- which links with socio economic deprivation. When you are sleeping rough, shivering in the cold, it's not the low carbs or low cals which are at the foremost of your thoughts. A tin of baked beans or a packet of crisp feels like a gift from heaven. 
We would do good to bear that in mind - before tweeting our righteous anger from a smartphone, while comfortably tucked up in a nice warm house- enjoying the blessings life has provided us with.

Sunday, December 3, 2017

Next?

Appraisals are always interesting- but I have mostly actually enjoyed them. Perhaps its been more about who I have done them with. Whatever be the reason, it has always given a reason to reflect, a time to think, a moment to take stock. This year, my appraiser had a fantastic question- at which point - somehow it felt that time stopped momentarily. It was a simple one…"What next?" You would have thought the answer would be simple…surely it was planned? Surely, I had an idea mapped out in my head?

You know the honest answer? I absolutely have no idea. I have rarely had a grand plan- not because I didn't want to but because things have simply happened for me along the way. When my parents sent me to this country, they had one and one ambition for me- something they tried but due to a multitude of reasons didn't quite happen. Times were different, the prism through which folks were judged were different- and I came with a burning ambition to become a Consultant in the NHS. Nothing else mattered- it was a laser like focus. Somehow it was a way of saying thank you to my parents- who sacrificed so much to get me across to a different country. And it happened finally in August 2008. I cant tell you what it meant for my parents- it perhaps chokes me slightly when I think of it- but the pinnacle was achieved.
Post that? Everything has been a bonus. Being Clinical Director of Portsmouth Diabetes team, Super six model, type 1 service…its been fun. And thats what a role tho me is all about- having fun.

Fast forward a few years- and thats been exactly the philosophy - fun. Take it as it goes along, try and focus on a few problems that folks with diabetes go through- and give it a whirl of the dice. Is it a step to something else? Not really. Its been being fortunate enough to be in a position to help others- try a few things, win some battles, concede others- but never failing to have fun. So far, life has been kind to me- met some amazing people along the way, so...whats next? Whatever is around the corner I suppose. I do keep hearing how tough life is as a Consultant- and it can be- no question. I also personally believe it is an opportunity very few people are fortunate enough to have- a spectacular once in a life time opportunity to make a difference to many others. Many dream to get in the position I find myself- and i am certainly going to give it a wholesome try while I am at it. Do I fail? Many many times- made mistakes, made errors of judgement…but thats about being a human being too, I suppose. As fallible as anyone, as prone to errors as anyone else.

Being in the position where I am- just into the 10th year of my Consultant life, its unbelievable where I have got to- mostly by luck, a lot due to being in the right place at right time- and a major part due to colleagues who have always been there…encouraging, supporting, helping. What next? There is no next per se…as ever, the chapter is blank…the book is written as I go along. Its a fascinating journey- they key is to enjoy it as one goes along, learn as best as one can from mistakes- and be humble enough to accept when those who you do this work for, folks living with diabetes, turn around and say "you may have got this wrong". The rest? A smorgasbord of genuine well-wishers, jealousy, politics, personalities….if I am brutally honest.

So I really don't know what's next in my career. Frankly, thats because I never set out to be anything but a Consultant in the NHS. Post that? Its a ride which I am enjoying…some doors will open, some will close…but its pretty much why I try different things like comic books, TED style talks…its just…different..its just…fun. Along the way? If one ends up helping a few folks beyond the day job? Its can't be that bad a thing.

So what's next? I don't know but you are welcome to join me in the ride. I promise you it will always be fun x




Saturday, November 18, 2017

Trial and Error





Do digital interventions in the world of diabetes work? Come to think of it, what defines what digital intervention is? The NHS has a fascinating approach to it all, ultra cautious to technology ( EVIDENCE shouts the detractors in a Len Goodman style) yet utterly oblivious to the clownish approach towards how we deal with governance or indeed evidence issues by sending letters via the Royal Mail. Who knows how much is acted upon, followed up etc.
Our zeal to be evidence focussed comes with a fascinating double edged sword...while entirely appropriate towards new medications..when it comes to technology and digital means, the approach is sloth like, cautious, defensive, suspicious.

Which is why I like the whole idea of disrupting the status quo- and watching the type 2 diabetes prevention digital strategy land has been fascinating to see. A very hard working team has gone through many a rigorous process and finally landed on 5 providers to see what they can achieve. There's a clear commitment to evaluate the results and see what impact it has- not only on usual things like weight, glucose but also, for me, access issues, socioeconomic determinants.
The approach is very simple...in 2017, having a digital platform to complement a face to face programme is about choice, it's about modernising...it's also about saying "I don't know whether it will work- but am happy to road test it and find out". The problem I have with folks who oppose every single thing is that as individuals who pride themselves on their prowess to interpret data, they also quickly succumb to their own confirmation bias. Very few are open enough to say..."do you know what? We are willing to look at this with an open mind". There is indeed the place for assessment of data, independent review before national roll outs...and more importantly business model which makes sense. However tweeting your outrage about something or anything digital from your slick smartphone takes irony to a whole new level, doesn't it?

If you want to know more about the digital type 2 diabetes prevention plan, have a look here. It gives you all the info you need, the process gone through, the areas where this will happen, the follow up plans and what comes next. There is no massive secret plot...just like the allocation of the diabetes transformation funds ( I repeat 42 million £ actually) it's transparent and based on one fundamental principle.."We are trying different things- as the status quo isn't working". As I have said multiple times, the best education programme is the one the patient attends, not the one which feeds on glories of the past. I will be very honest, if I develop any type of diabetes, as things stand with the education courses, I would find it difficult to attend them all. Not because I don't want to, but there is also this thing called life and I would like the system to fit around my busy life, not me fit in with the system. In the modern digital era, if anyone suggests so, it gets the boot and I find another provider who fits my needs. That's the way I do my banking, that's the way I do my shopping or my check in for my flights...why should my health be any different?

So we are here. The Type 2 diabetes prevention digital stream has landed, the Type 2 diabetes one will follow as will the Type 1 diabetes. That is the strategy and we shall find out what it delivers. If the face to face programmes are better, then there's nothing to fear, is there? Time should, in that case, show the digital ones to have failed and we will be the first ones to admit it didn't work. Heck, we should take pride that the NHS is doing something not many are trying- a digital programme nationally with a decent evaluation behind it too. The thing with innovation is exactly that...not everything works...we need to test, adapt, amend and find the one that does work...so we shall try.

The NHS England diabetes team have been clear about its direction:
Strategy and areas of high priority: NHS RightCare Pathway
Money and investment: Nearly 65 million £ into spread of NDPP & improving care
Reducing variation: working with GIRFT team to improve safety etc
Digital strategy: the first one has landed, more to follow
Access to technology: Libre on tariff and national guidance

No doubt we have much more to do - not to mention we have a fair few exciting things in the pipeline- so let's see what the future holds!

The encouraging thing is that we i.e. the NHSE diabetes team spent 2 days at a national conference of diabetes, attended by health care professionals from many quarters- and it was heartening to hear the words of encouragement and overall positivity. Maybe the detractors are just those who love being behind keyboards....to them? My request is bear with us, be patient..I can assure you there's no lack of effort on our part. Feel free to be a constructive critic rather than rage against the machines.

And if you can't, at the very least, don't sit in judgement on those who lives you do not live.You want to have a polite discussion about something you don't agree with? We are very easy to find.



Saturday, November 11, 2017

Keeping Up?

We are certainly in interesting times, aren't we? Technology is coming at us at the rate of knots in the NHS- and the NHS is trying to give it a go of fitting in with it- how successfully -is a debate of a different nature altogether I suppose. The problem is though a traditional "method" has been to block technology based on evidence, governance etc….it appears something has shifted- and thats the attitude of the folks using it- whether it be HCPs or patients.

Take WhatsApp- the puritans will say- don't you dare use it, cos data will be leaked, confidential information will run amok - and Orcs will inherit the earth..or something along those lines. It may be a good line for governance meetings, information commissioners…unfortunately not so for those pesky modern doctors or indeed, patients. In the underground, it rages - rampant. So the suggestion is "But we could create something which will be safe- why not use it?".

Problem? The reaction is.."Naah bruv, am good. I like WhatsApp- thats how we roll- so why don't you see how you can make THAT secure, rather than make me download ANOTHER platform". To most folks outside the NHS bubble of governance, its quite unfathomable that we would want to spend money on more platforms when we have free devices like Skype or WhatsApp. I mean, I can speak to my parents each weekend on Skype- who live in India- for free- but NHS? Shiver me timbers…have you done the Governance Dance yet? And this in spite of the NHS actually using it…oh no Sir, EACH area has to have its OWN governance sign off…cos the N in NHS stands for…well..I don't know…doesn't sound National to me. I paraphrase -but you get my drift.

Lets take now the latest furore of GPatHand…many pros and cons to it- especially valid points made about funding. If you strip away patients, then you need to ensure how you balance the funding…do you increase the "fee" for more complex patients? How does a GP surgery survive etc…and they absolutely must be looked at. But the reaction is -as ever- fascinating. Is it because its done by Babylon- cos all private organisations are the devils spawn? Would we have said hallelujah and about time- if it was done by lets say, the BMA (By the way, why not?)? I don't know the answer to that- but look at twitter- many a folks are saying this works for them too in their busy lives. So what now? This is what is called disruption…or is it modernisation? Do we rail against the concept? Or do we rail against the provider? Or is this the right thing to do because that fits around peoples busy lives in 2017- but without stripping assets?

This is where technology is caught. In the world outside, technology adapts to consumers. In health, we ask consumers to adapt to the system- and we then throw around words like "compliance", "non-attenders" etc. Diabetes is no different- look at education programmes, look at technology- its all about "No- YOU fit in with me"- not.."Ok, lets see what I can do to fit in with the modern world". Education programmes- resistant to change-as thats the way its always been done, thats what got the evidence- so it doesn't matter whether Jo Bloggs can attend or not- its about sticking to what worked in the 80s or 90s. So folks vote with their feet, find their own way- or not- and then we wonder why outcomes are not quite improving. Or indeed the attendance rates.

I have got one super solid tip to many a policy-maker. Try it. Not put it on a powerpoint slide. Not run a hashtag campaign. Its called "Listening to patients". Or as the technology world says "Listening to consumers"- thats how they develop the latest thing we all go "Oh I like THAT" about. Not have a token patient to tick a box on your committee. But actually do it.Technology is no different. If you find time? Look up something in the world of diabetes -something called "We are not waiting". The response from some quarters? Predictably- Governance and evidence. People are not waiting for the future to come to them, they are going and shaping it themselves. The billion dollar qs? Can we keep up? 

Interesting times as I say- but it feels like a moment in time- the NHS -is being prodded into doing things differently. And this one won't come from politicians- but from within the system-as well as the users. Don't block it…much better to enable it. The unfolding of all of this will be fascinating to behold.

Wednesday, November 1, 2017

Respair



Respair. Ever heard of that term? Its something from the 15th century to be fair. It means "Fresh Hope..or a recovery from despair". And I feel a bit of that today. 1st November 2017. A couple of things happened today- and am also going to use this blog to answer a few queries.

Well- what did happen was that Freestyle Libre got on the NHS Tariff. We started this year with me being roundly told it was impossible to get this to tariff- but with help from some tenacious allies of different quarters, we are here. Along with it, NHS England- via their Regional Medicine Optimisations Committee got guidelines out today to make sure we can try and reduce variation (so have Wales!) …so you see…respair it indeed is today. Most folks probably won't get it- but this is a big deal what so many have worked together to achieve- many years back,we made one big step of moving from urine dip to finger prick testing. Now we make the next one to go to non-invasive one- of course we have had Continuous Glucose monitoring systems- but the high cost of them have made it prohibitive for many, caused countless battles, much angst- though understandably the purists love it. However, at scale? At a population level? This is a big step change. Respair it indeed is.

So now to answer some queries- as there is only so much one can do on twitter. Some believe I have pushed for Libre -perhaps because I have "shares" in the company or something along those lines. No- I don't- and give me some credit-if I was, I wouldn't be doing it so openly. I may not be the brightest tool in the box- but not that stupid either. To clarify? I would do exactly the same for any diabetes innovation. You are very welcome to ask other relevant Tech companies such as Roche, Medtronic or Dexcom about my open interactions with them- and what we are trying  to do to improve access.

Second group have been a few academics- perhaps upset that they haven't been involved hugely- or their pure academic view of the world of Type 1 diabetes doesn't match mine. Or that they could have done with more money to conduct more RCTs while the population waited. Lets put it this way, I do consult academics- when i have Professor Stephanie Amiel, Pratik Chaudhury or Simon Heller to fall back on for advice and direction, I strongly feel that the bases are covered. Maybe best trying to emulate them, their work, their ethos- and then try & engage again.

Next comes some medicine management groups saying "What about NICE?". Well, this is an innovative way of doing glucose monitoring- plus the guidelines set are looking at cost neutrality (This is NOT being placed as something for everybody with diabetes)- whether it be by strip numbers or reduction of DKA admissions-plus timelines about stopping if it doesn't work/help. National level data will be collected for this- and we will reassess. 
I have also been told that you don't need to have anything to do with Type 1 diabetes to make a judgement whether patents should have this or not. 
Let me tell you my response to that- politely.

Its that sort of lazy-arsed bone-idle nonsense that led to many systems not recognising hospitals needed inpatient diabetes cover- resulting in enough harm. Much data and campaigning later, things have improved a bit. Why? Because those who live with diabetes or care for it- were ignored roundly. 
And perhaps this is where I disagree with some. I spent many years in meetings listening to people acting as self appointed vanguards, paying lip service about "involving patients" and swore that if I ever get in any position worth its salt, that won't happen. So yup, on my watch? We listen to patient needs and work with all to make it happen. Period. You want to improve outcomes? You listen to those living with it. If you don't believe in that, you are- categorically-in the wrong job.

To add- to areas which say NICE haven't approved- I will have a couple of questions for you. Fair enough- don't give access to Libre. BUT- have you given Pumps & CGM to your local population as NICE have said or have you used NICE as a convenient excuse when needed? Have you used drug prescribing as per NICE guidelines? Have you given Type 1 patients access to 6-10 strips..or have you said- "But its just a guide?"
So, to the minority- and I must stress- the detractors have been that- read the RMOC guidelines- and see which group of patients may benefit from it. As an added open offer, you want me to come to your CCG and take questions? Go on- am right here- I will come with my questions too. I will come also with the Right Care Pathway to find out if it has been adopted- and if not, why not. Savings and all that.

Finally, there's one thing those who are close to me know well- but for those who aren't- here you go. I have many flaws- I mean many, many flaws. A sizzling temper, an ego the size of a planet, a very open "No suffering fools gladly" persona…but what I do have? Is tenacity to finish what I started. Freestyle Libre is the start- there's plenty of technology around the corner to pick the cudgels up for too. 
I will finish this blog by thanking all the patient charities, specialist organisations, NHS England, NICE, NHSBSA, DH…all of whom have been absolutely amazing in their help. We are -hopefully-at a new dawn. Type 1 diabetes care- its about time we got up to speed- and fingers crossed, we can take the next necessary steps. The whole community needs a bit of Respair- and as long as I do this role? 
Will give it one heck of a shot. Lets see where it takes us.

Thursday, October 26, 2017

Going Digital



You know what…when I was in medical school, the word "digital" tended to be associated with "doing a digital examination"- so hope you excuse the Beavis/Butthead humour when i tend to have the urge to crack a smile whenever i hear the word the NHS is about to go…Digital. It never ceases to amuse me…sorry I know I am in my 40s…it shouldn't but it does. Anyway, beyond that, its all the fad nowadays, isn't it? We are all going digital- and that indeed is the next holy grail for us to chase.

But what does it actually mean? Does digital mean upgrading our fax referrals to emails or is it about using Artificial Intelligence, GoogleGlass etc to advance healthcare? Or is it a bit of both? I suspect this is where the NHS as ever comes unstuck. It has, suddenly- and quite rightly developed an urge to modernise with the times. It has all around it folks using Apps, WhatsApp, different communication strategies, use of cloud…heck, we all in our day to day lives have adapted technology as an ever present companion- yet come to work- and you wait..sipping your coffee, drumming your fingers…as the PC loads up- wakes up slowly but surely.
And this is where the struggle begins. On one end, we have the digital champions (No- I am NOT laughing) driving the uptake of innovation, trying to get the NHS up to the present century, while down in the basement, the fax machine whirrs into action yet another day. We have the most amazing dichotomy where any transfer of informatics have governance all over it like hawks- yet somehow sending letters through the post is ok. We have Skype frowned on as someone may hack the feed, yet its ok to discuss private matters on a ward with the curtain drawn- ah those amazing sound proof curtains. It feels as if the NHS is a vehicle let loose on a racing track- yet alas with still the engine of a Rover.

Amongst all that are 3 different levels of issues- firstly- the public and understandably an inherent sense of mistrust with continuous data flow and uptake. Care.Uk - and subsequently DeepMind have had their issues- and not unexpectedly, the public is not so keen to share their data with all- in some cloud. The conspiracy theories also don't help- but in the most, I suspect this one is a battle for hearts, minds and overall trust before we get informatics flowing seamlessly. The public has to trust the NHS to handle their data better- they seem to trust their banks more at the moment.
The second one is the myriad of providers, IT companies and their rules created. Let me cut through all the mumbo-jumbo and let me distill it down to simple english.
When I see a patient, why on earth, in 2017, can me and my GP colleague not share the same system to have notes? Not be able to entry our bits in the same system? I mean- thats just utterly bonkers, isn't it? Both professionals- caring for the same person- yet on different systems which don't talk to each other. What. The. Actual. Flip.
Finally, its that holy grail of "evidence". How on earth you do randomised controlled trials on digital technology -I have no idea. I mean, the pace at which technology moves, the NHS would have just completed RCTs on beta max by now- while we all were enjoying blue ray. The argument continues- let me give you one specific example. Structured education- ask any patient- they would welcome its presence. Do we have it yet? No. Why? Cos..evidence- or so says the professionals. Problem? As per national data- the uptake rate of the face to face ones- however amazing and evidence based it is? Well, its not very encouraging-lets just put it that way.

Fascinating, isn't it? The issue is whether the NHS can marry those 2 distant poles- one about faxing referrals, the other incorporating AI into insulin algorithms. I suspect the answer is yes- but it certainly needs both tackling, not just one. There is a need to modernise, there is also a need to keep pace.
Can we do it? Time will tell. The NHS has a blistering history with IT- of making a pigs ear of it. I could bore you with what we are up to in diabetes in NHS England- but won't for now- thats another story-for another day. But for now? Just let me and primary care be on one system- so that the patient in the middle isn't there wondering how amazingly amateurish we all are.

Convince me that's possible -seamlessly across the country- and who knows- we may boldly go where the NHS has never been before.




Thursday, October 12, 2017

Appreciated

What do you call a group of diabetes specialists? I don't know but whatever it is, "it" was there. Interspersed with people who had diabetes, fellow healthcare professionals, managers, colleagues from all parts of the diabetes world in this country, the annual Quality in Care awards in Guildford brought many together.

As I sat down in a corner, looking around, what struck me was the atmosphere..bustling with energy- amongst some old friends, there were many a new face some who I had heard of, some who I knew virtually via Twitter. I won't do a narrative run down of the event itself but the event had something about it. It was fabulous to see teams like the Liverpool team led by Reza Zaidi pick up a recognition. The drive to improve things has always shine through in Reza so it was great to see the recognition. Same for Paul Peters and his team from Durham,Jackie Eliott from Sheffield or May from Southport. The North West London team deserved every one they picked up as their drive, hunger and ambition to improve diabetes care has stood out like a beacon in recent times. And why not get the opportunity to shine and enjoy their moment in the sun? 

The Diabetes Research Wellness Foundation, led by Sarah Tutton, was deservedly recognised for all the local work they do- as was some fabulous individuals such as Sheila Smyth for their work. There were 3 personal reasons of satisfaction- the first two were related to projects I have been involved with- the Type 1 diabetes comic book and the information portal for Type 1 diabetes, T1resources. My only role in those were mostly to get the right people together but the credit for the comic book sits with Mayank, Danny, Joe, Jen, Andy and Laura. I know that sounds ridiculously self effacing but humility isn't my forte and on this one, credit where it's due. Same for the T1resources...the work done by Sophie, Mike and Kevin were astounding. Committed individuals working together to improve diabetes care- what else can one ask for?

I suspect the main joy for me was to establish an NHS England award recognising contribution above and beyond the call of duty. I do believe that our role cannot be simply to criticise or roll down diktats about the next target- but also to step in and laud good work where it's happening. A most deserved winner for Oliver Jelly- I would struggle to think of a more self effacing, unobtrusive person who has and continues to do so much to champion diabetes care. His expression was worth every single moment indeed!

Finally, thank you to Sanofi for hosting it and especially Becky Reeves who I have known as a friend for a long time. It was a fabulous evening- and for me, in a policy role or as someone who has snapped and barked while trying to raise the profile of diabetes care...yesterday evening felt like my job is nearly done on this front. The room was full of individuals who understood the pressure of the NHS but hadn't dampened their spirit or drive to improve diabetes care - and they stood together with patients in an effort to do so. Much more needs to happen but the will is there, it feels the morale isn't broken...and that to me, is the main thing which will improve care- not the money or a stick about "who isn't doing well" . Thank you to all who were there- thank you for all the work you do and the passion to improve care.

It is much appreciated. X

Friday, October 6, 2017

Maze

Tenacity. How far do you take it before you say...you know what...this isn't worth it? The NHS tests you, doesn't it? The groups, the bodies, the approval process, the multiple committees...its enough to make your eyes water. At one point, you are just happy to do your day job, pick up your salary- and go home. And therein lies a lot of the inertia in the system. Its not simply the lack of trying from individuals, its the incredibly byzantine process that sometimes makes you go..."Ah well".

Let me give you an example- recent release of diabetes transformation funds (41 million £ across the country for 2017-2018)- and its been absolutely fascinating to see it from two polar opposites. One- from the central team- giving the money out- and hoping /expecting folks to get on with using the money to improve diabetes care...(after all, we keep getting told, if we only had some money to "transform" the system, all would be better- so surely, the system is now adult enough to use the money when it arrives?)- and secondly from a local level. I don't hold any management roles anymore in diabetes at a local level- but the intrigue of the process made me decide to get involved- perhaps also to get a feel of "how IS it going on the ground?" When clinicians voice their frustration, are they actually meaning it..or making excuses?

And you know what? It has been one of the most fascinating, character building, frustrating as well as eye opening things I have ever done. Without going into too much details (you have to save something for your book after all) below is a list of organisations I have had to contact, seek approval from, inform, cajole, send snappy emails to, chat with to get the money moving to actually deliver care:

Local Sustainability & Transformation Plan Board
Local CCG X 3
Acute Trust
2 community provider trusts 
Podiatry department
Orthotic department
5 GP leads with interest in diabetes
NHS England South team
Clinical Network
Accountable Care System

I suspect I have missed out a fair few- but at last count, to free up the money which we from NHS England allocated- it has taken me 187 emails, 17 meetings, countless conversations and many many hours spent doing something I am not even paid to do- apart from that tenet of "we are here for the patients".Towards the end, I was doing it simply to find out how far this trail would go, how convoluted can we make the process, perhaps even just for my own entertainment...and in a nutshell, why even money can't solve the problems the NHS has. It's given me insight and perhaps food for thought as to how we should use money in future, if at all.

All the fault of Lansley and his creation of the maze or just a convenient excuse to absolve us of our roles too? I suspect there is a mixture of both. I recall negotiating in the Pre-Lansley era too. Multiple PCTs, Trusts firmly entrenched in their bottom lines, GP discussions at individual surgery levels, if you ever want to know how easy or difficult it was to ensure there was one diabetes team across 3 providers in 2010? Buy me a beer someday....it was perhaps just a tad less folks to negotiate and barter with- but the atmosphere was as much stifling....the financial crunch at present has perhaps forced previous siloed players to come a little bit more out of their entrenched views-but that's about it. Lansley didn't help but it wasn't a land of honey and manna either before the Health & Social care Act.

The NHS and the varying roles I do keeps teaching me valuable lessons...and one of them very simply is that it's easy to slip into a zone of thinking "why aren't they doing their job?"- whether it be from an NHSE perspective..or from a clinician on the ground. This maze and byzantine process needs to stop if we are to have any hope of progressing care- let's put it this way, if I accepted all the meeting requests sent to me, I would have zero time to do the work I am actually supposed to do- look after patients. 
The even greater irony is that none of those bodies are actually deliberately trying to stymie care or filled with villainous characters....they are doing their job, as asked by the system, following a process set up by ourselves over the years- though there probably as ever is a jostling for position. Whenever a new structure or body emerges, the previous ones perhaps feel a bit threatened, want to justify their presence, make their authority felt. Whatever it may be, it doesn't help those for whom the NHS has been set. Of that 41 million £ earmarked directly for patients with diabetes, how much will actually end up directly helping them? I wish I could give you a confident answer at the moment- from my experience of local devolution, the variability seen etc? Let's see.

So where to next? I suspect some of the legal issues come in the way...but some, if not a lot of these bodies need to go if we are to entangle the mess we are in. We can dislike STPs, rail against  ACS because they come from the land of the free...but whatever it is, we must and have to stop this merry go round with multiple organisations before anything can happen. Clinicians don't have the time, energy to "keep at it" all the time..its soul destroying, disheartening and not something that helps any of us. What I find fascinating is the number of conferences and meetings say exactly this very thing, attended by these very folks...and yet- when it comes down to it? The process goes through its churn- it's as if the NHS cannot unlearn something it has been accustomed to do.

You would think this blog is written in frustration- it actually isn't. The end product of all that has been that "we have finally got there". Its written to showcase the challenges we have created for ourselves. This one particularly is to exhort anyone who reads to think how their role in any management body actually helps, what sort of "power" one must cede to allow patient care to flourish and think beyond the narrow tramlines of "process". We must do better than this..we must have the ability to sit around a table, streamline organisations and be quick, nimble and get to the actual business of delivering patient care quicker. We need to make our way out of this maze. And quick. 

Otherwise, all the money in the world won't improve care- it will simply be more of the same. Here's to  a good weekend but please, do take a moment to think. How actually does the maze help any of us? Or the population for whom we are the appointed vanguards of using taxpayers money. Have a think, won't you?

Sunday, September 17, 2017

Libre…What next?

Are we all a bit more calm now? Post the news breaking of Libre being available on NHS Tariff, the reactions have been pretty much on expected lines. Feverish excitement, wild speculations , a tiny minority expressing their concerns, views, forums abuzz with questions…its all happened. My inbox exploded- as did my Twitter feed- with views ranging from a former MP suggesting I be knighted to some suggesting I had little idea of what I was doing. To me, however, a measure of whether policy decision X or Y is good or bad is measured by the side on which the majority of reaction falls. This isn't a job to make everyone happy- its to do what would benefit the majority- beyond the white hot realms of social media. You listen to the views on social media- but you never accept that as gospel- after all, Twitter is where, depending on the social bubble extent, Brexit never happened, Hillary Clinton is POTUS and Corbyn is the PM of this country. However, its a good barometer too about public mood- and thankfully, doing a full time job, interacting with patients, seeing the pros and cons does come in handy. So- its no small sense of achievement to see the news- broadly greeted with optimism- though quite rightly, from sensible heads- with a degree of cautious optimism.

So whats next? I would encourage you to read below- as the majority- if not all- of the folks speculating etc haven't been involved with discussions or negotiations- so for want of a better word, here you go- from the horses mouth
The next stage of this process is to convince all local economies to put this in formulary. The justifiable concern is that it opens post code lottery-just as has happened with Pumps and CGM etc. To help avoid that, the Type 1 diabetes network are working to create a business case template that areas-if they are struggling- can use. The network is spearheaded by the Consultant Diabetes organisation, ABCD- with contributions from doyens of BOTH paediatrics and adult world- ergo Fiona Campbell and Stephanie Amiel; diabetes charities, leads of the Insulin Pump network, representation from all 4 countries, as well as respected experts, former NHS England National clinical directors- so a pretty good bunch of folks who can help steer this. I would also encourage anyone successful to get this on local formulary- to share with others. Its called cascading good practice- the N in the NHS is supposed to stand for National. Who knows- this could actually be a template of working we all learn from and tackle post code lottery in other areas of diabetes care!

The next phase of concern is that it will "eat into the CGM budget". So let me explain something to all and sundry. There is NOTHING called a CGM budget- there is in fact nothing called a Type 1 diabetes budget. There is a "Diabetes" budget.Which, on this instance, is a good thing. Here is something as regards how much we spend on diabetes drugs in the overall budget. Of every £9 we spend in the whole NHS, about £1 is spent solely for diabetes care. Thats a huge budget spend- is there opportunity to ensure that this is used appropriately? Yes- absolutely. Simply take your time and see the amount of expensive drugs we use in elderly people or folks who don't need them as per indications or indeed look at how over-treatment in elderly frail Type 2 diabetes causes more admissions. Stop those-save the money on the drugs and indeed the admission costs- use the money elsewhere- such as on this occasion, appropriate use of blood glucose monitoring. It is not rocket science, it is about being savvy, being focussed on what the whole diabetes population needs and use of appropriate medication. Needless to say? The majority of spend is NOT on strips- BUT on medications in Type 2 diabetes. They all have their place- just not for everyone- we need to be better at understanding population based care- and use of technology where appropriate.

Abbott also have a responsibility and we are working with them to ensure data collection is done on a national basis so we can see the impact of its use- which must be published too. We are also working with them to ensure the onus for educating patients and professionals simply doesn't fall back on the NHS. For the areas who may not necessarily have those programmes to hand, Abbott must have a commitment to help that process. I am aware they are working on it- and we are working closely on this too. Watch this space!
We are also working with patient charities- together- Diabetes UK, JDRF and INPUT- to ensure we manage expectations properly- and all appreciate that "going on tariff" is only step 1- albeit a big step. Be patient, avoid speculations- and if you want an official update, listen to what the charities put out- not forums or individuals who have little involvement in overall process.

Would you like to know the aim of our ambition? It involves CGM availability- uniformly across the NHS- and I can assure you conversations are ongoing with relevant companies such as Dexcom, Roche, Medtronic et al to tackle this chestnut too. Feel free to contact them and ask too.
It involves ensuring we have enough HCPs too- who know what they are doing-it involves financial assessments etc.
I am also keen to have a unified IT system which cuts across all systems- and ensures a diabetes patient has access to all thats needed as regards notes, data, results etc. I will make no bones about it- I admire the SCI-DC system the Scots have- the query there is whether a disease specific platform is the right way ahead-or not. I would like to have a out of hours hotline/Whatsapp system that is available to any ED in the country to ensure pump patients etc are safe….so many things, huh?

In short? My ambition to improve Type 1 care has no limits- but I am also fully aware that not all can or will be achieved. However, that shouldn't limit the efforts either. To all those who are worried re Libre, my appeal is this. You are one community. Be happy for those who may have access to Libre beyond the ability to pay. and work with us to ensure we also can ensure the other bits-as outlined above- can happen.
Finally, a big thank you to so many who have left messages of thanks- and more pertinently, have asked me not to be discouraged by the negativity of a few.That is unlikely to happen- I know my goals, I bank on the support of the majority and the day the overwhelming feedback is that I am getting it wrong, I will step down

I repeat-again. Together? Stronger.
Divided? We Fall.


Wednesday, September 13, 2017

Liberation?

Freestyle Libre. It captured the imagination of the public and professional as soon as it arrived. I suppose you could see why. I use the word "suppose" as for someone who isn't living with diabetes, it is slightly odd to say otherwise in my view. It opened up the prospect of "checking your glucose levels without having to prick your finger". Pretty revolutionary as a concept, no question. You put a disc like thing on you, it lasts for 2 weeks and then...you just scan yourself-whenever you want and voila, you can see your glucose levels. I mean, what the heck, right? This was Star Trek level stuff and when it landed, the expressions of incredulity were understandably high.

However, post that, started, quite rightly, the questions. It looks fancy, sure, but does it do the job? Does it check glucose levels well? Does it stand the test of time? As someone who works in the field of diabetes, I always try to learn from evidence in the public domain, talk to colleagues using it as well as and perhaps more importantly the feedback of patients. It started with a degree of mixture of views from the "oh my Lord, where was this thing all my life" to the "Meh, doesn't really match with my needs in life". As time progressed, other issues emerged, such as evidence base or lack of it, problems with adhesive used, data fatigue for patients...to name a few.

As time progressed, reports started coming in about its improvement, it's use as well as local knowledge about patients needing it, benefitting from it, and my own understanding grew. What also grew was the clamour of why the NHS was standing by and encouraging a 2 tier system. Available to buy on the market, it became available to some, but not to many. Frustrations grew as those who really needed it couldn't afford it and some departments ended up begging their local CCGs for case by case scenario as well as use of charity funds etc. A non sustainable situation emerged as its efficacy-as per clinicians- grew, and the clamour for it being available grew with it.

It's been a fascinating experience working on this from within NHS England and liaising with Department of Health, NICE, diabetes charities such as JDRF, Diabetes UK and INPUT- as well as numerous individual patients and clinicians. Many issues emerged- such as the importance of training both clinicians and patients. What good is a device - however slick it is- if you don't know what to do with it? I have found views from academics fascinating- driven by numbers and asking for more trials - where do you go with that when a sizeable number of patients ask for it,should be having it and daily input from clinics suggest this could be a way ahead for the thousands who don't check their blood sugars at all? Or those who are fed up of testing? Or the kids who can be checked for night time lows without having to wake them up? Is it my role or those who don't have diabetes to make a judgement and make them wait? Or is it our role to listen yet ensure we have enough checks to facilitate the process of improved care? It's a tough one as as I also pick up the frustration on both sides- one clamouring for more data, one for quicker adoption. The whole sphere of medicine is forever engaged in this tough battle- with accusations of the NHS being archaic, old. An NHS which is afraid to use WhatsApp due to security yet send letters by post, uses fax machines....fascinating.

So what about this bit of kit? You want to have a bit of rough context? A bit of finances to whet your appetite? Each DKA admission costs approx £2000. You could approximately treat 20-25 patients with type 1 diabetes in a month and need to prevent 1 of them getting admitted - once-..in that month- give or take. One. That's all that's needed to "recoup" the cost.
Throw in the lesser strips needed, the benefit of added education, the impact behind sheer numbers such as A1c, relevance in hypos, engagement ...well...we may just have a case for it. This is a simply more innovative way of measuring your glucose levels- nothing else. In a world where Expo17 was mostly about adoption of technology and innovation, it's up to you as a payor how you see this in relation to existing blood sugar monitoring systems.

So we are here and the obvious questions are : what's next? Is it for anyone with diabetes? No. But given the right education with the right support, it indeed is for some. The device is not a toy- it is to be seen as a tool to help folks self manage- just as blood sugar monitoring is for those on intensive insulin- and without hesitation, that principle of "do you have the right education" applies to BOTH the patient and the healthcare professional. It is thus satisfying to see this "land" and have a place in type 1 diabetes management in the UK- it's about time we modernised ourselves a bit. It is now available on tariff- which I also appreciate does involve local negotiations. 
And ladies and gentlemen, this is exactly where specialists need to stand up and be the advocate for their patients. Use your relations, make your business case, learn from each other, if needed- do ask for help- but please, do make the case. If you can make the case for a GLP-1 analogue or a new swish insulin, you can make it for this too. That is YOUR role. My role was to work with all concerned and ensure it got to tariff- the next step is all yours. And if you don't believe this is for your patients? Then explain why to the patients when they come along- why they are being sucked into a post code lottery because of your personal beliefs.

Finally, the question has been why only Libre for Abbott. The answer to the question is simple- because it is the first of its type - at a financial competitive margin. Does this open up the door for others? Possibly but it needs engagement, it needs working with policy makers, not doing silly things like denigrating your competition. I would like to see ALL relevant technology available to patients- but there needs to be balance, there needs to be evidence that professionals know how to use them, there needs to be financial considerations, there needs to be dialogue. Working with industry is a 2 way street. This could be the start of something exciting- the environment seems ripe for digital innovation- this is only but a part of it.

I would like to finish this by thanking Diabetes UK, JDRF and INPUT for their consistent support and help while putting up my flashes of temper & impertinence ( no puns), the team of Lord O'Shaughnessy in the Department of Health, NICE team who helped with the Innovation briefing and the finance team within NHS England as well as clinicians like Pratik Chaudhury, Emma Wilmot, Marc Atkins,Iain Cranston, Gerry Rayman, Mark Evans,David Russell-Jones, Stephanie Amiel, et al who have been fabulously supportive as well as has had kind words of advice when needed. It's been a tortuous journey but we are here. 
But most of all? Thank you to the numerous patients, either those on social media or those I meet who continue to be a source of strength- supportive, encouraging, helping- especially during those late nights when the knocks taken hurt just a little bit more.

The journey however isn't complete. This is perhaps only the end of the first quarter. The second will need to show adoption of this technology uniformly while the following ones will look at other relevant technology such as CGMS devices, sensor augmented pumps, further non invasive glucose monitoring, OpenAPS technology et al.


Can we do it? I have faith in you all we can. This has been a perfect example of what can be done if all relevant bodies join forces for need of patients. 
Together, ladies & gentlemen, we are much stronger.