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


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