Posted by on Wednesday, 14 November 2018

Frestyle Libre available on prescription. Again.

It's with a certain sense of deja-vu that I mark World Diabetes Day this year with the news that Abbott's Freestyle Libre flash glucose monitor will become available to people with type 1 diabetes in the UK on prescription from April 2019. Cue inevitable Twitter meltdown.

Hang on... haven't we been here before?
Well yes. And no. You may remember me writing a post in September last year on this very subject.

Technically the Libre was made available on prescription on 1st November 2017, "subject to local healthcare economic approval". Prior to that 2017 announcement various Big Health and Diabetes Organisations (such as the Regional Medicines Optimisation Committee, NICE and a collaboration of Diabetes UK, ABCD, JDRF and INPUT) put together helpful documents, guidance and national position statements about what Libre was, who it might be useful for and the evidence to support its use.

What followed was an unholy scrabble of various different CCGs across the UK who either adopted Libre under RMOC criteria, published their own set of rules (which often had bizarre additional requirements that seemed to bear no relation to Libre and its use, such as blood pressure results) or denied access entirely saying that there wasn't enough evidence, or that they didn't like the colour of the packaging or any number of "Whatever we do, let's kick this can as far down the road as we can manage" strategies. And all the while those CCGs in the 'no' camp had meetings and re-reviewed the evidence that had already helpfully been reviewed for them, and invested time (and presumably money) into reinventing all the wheels they could see.

So what emerged was variously described as a 'postcode lottery', 'Libre lotto' and 'bloomin outrage' and across the country people living in the (at the last count) 51 CCGs to have said a big fat NO to prescribing Libre got together and organised themselves to petition, badger and generally make a fuss about it.

Meanwhile, in areas where Libre was more freely prescribed, the early results were overwhelmingly positive. HbA1c's tumbled, and importantly positive effects were seen at all starting points, with significant improvements being seen in those who hardly checked BG at all as well as those regularly checking 6-8 times every day.


And the results didn't begin to tail off after an initial positive surge either. As more data were added, the improvements were sustained and improved further.

Meanwhile the irrepressible, unstoppable force that is Dr Partha Kar was not for taking 'no' for an answer. If the evidence was sufficient for area A, why was it deemed insufficient for area B just down the road? Gentle pressure was applied with an NHS England behatted sledgehammer and a smile. Additionally everyone's second favourite Libre-prescribing-data-muncher Nick Cahm quickly became errant CCG's worst nightmare as he quietly and eloquently sifted through mountains of information to show how utterly nonsensical some of these local decisions were. And Diabetes UK weighed in to support and rally local people in their #fightforflash. The CCGs didn't stand a chance really.

And so today, the biggest of NHS bigwigs Simon Stevens joined in to announce that Libre will be available nationwide under RMOC guidance from April 2019:

“As the NHS prepares to put digital health and technology at the heart of our long term plan for the future, NHS England is taking important action so that regardless of where you live, if you’re a patient with Type 1 diabetes you can reap the benefits of this life improving technology.”

So who exactly will have access?
As far as I am aware this is the guidance that will be used to identify appropriate people with diabetes who will benefit from Freestyle Libre going forward:

It is recommended that Freestyle Libre® should only be used for people with Type 1 diabetes, aged four and above, attending specialist Type 1 care using multiple daily injections or insulin pump therapy, who have been assessed by the specialist clinician and deemed to meet one or more of the following:

  1. Patients who undertake intensive monitoring >8 times daily
  2. Those who meet the current NICE criteria for insulin pump therapy (HbA1c >8.5% (69.4mmol/mol) or disabling hypoglycemia as described in NICE TA151) where a successful trial of FreeStyle Libre® may avoid the need for pump therapy.
  3. Those who have recently developed impaired awareness of hypoglycaemia. It is noted that for persistent hypoglycaemia unawareness, NICE recommend continuous glucose monitoring with alarms and Freestyle Libre does currently not have that function.
  4. Frequent admissions (>2 per year) with DKA or hypoglycaemia.
  5. Those who require third parties to carry out monitoring and where conventional blood testing is not possible. In addition, all patients (or carers) must be willing to undertake training in the use of Freestyle Libre® and commit to ongoing regular follow-up and monitoring (including remote follow-up where this is offered). Adjunct blood testing strips should be prescribed according to locally agreed best value guidelines with an expectation that demand/frequency of supply will be reduced.

It will be very interesting to see how this works in practice, and in particular whether this framework allows widespread adoption of Libre2 when that launches in the UK (at the same price as Libre1 apparently), which gives Libre users the option of alerts to prompt scanning when BG rises or falls to particular limits.

Roll on April!

Posted by on Saturday, 13 October 2018

European Launch of the MiniMed 670G - Switzerland

The Medtronic Mothership poised for takeoff
I was chuffed to be invited to join bloggers and diabetes advocates from Belgium, the Netherlands, Switzerland, Sweden, Finland, the UK and other places I have almost certainly forgotten for the Medtronic Diabetes Community Exchange 2018 at Medtronic's European HQ in Tolochenaz, Switzerland.

I was particularly pleased to be invited to walk in the footsteps of the legendary Alison and Tim from Shoot Up or Put Up and to needlessly and completely unnecessarily rekindle the rumours that Medtronic have an entire department dedicated to the drowning of puppies in their relentless pursuit of evil. Rumours which are, of course, entirely untrue. And completely made up by Tim. Or are they?

We arrived on Thursday afternoon and were swiftly transported to the impossibly quaint, beautiful and strangely fragrant 'Chalet Suisse' restaurant where we were treated to a slap-up meal composed of cold meats, pickles and industrial quanities of gently bubbling cheese into which we enthusiastically dunked hunks of white bread. Fluffy white bread, a vat of cheese and a little alcohol. What easier meal could there possibly be for a tableful of pancreas impersonators to contend with? As inevitably happens at these events, people with diabetes quickly feel at ease with each other and conversation flowed to a burbling soundtrack of bleeps and buzzes from various bits of diabetes kit. It was a very lovely evening. Thanks Medtronic!

All those friendly faces and barely a functioning pancreas between them.
European Launch of the MM670G
It was perhaps no surprise that Medtronic had invited us during this particular week - in which their latest hybrid closed-loop insulin pump system launched in Europe. The launch begins with the UK, the Netherlands, Belgium, Sweden, Italy and Slovenia as of 10th October, with Finland and Denmark following hot on our heels next week. I have been using Medtronic pumps for the past 7 years or so, but others around the table used other brands, pods or MDI injections.

Inevitable device timeline pic. No future dates, naturally.
The MiniMed 670G launched in the US in June 2017, and the version launching in Europe is almost exactly the same. If you are new to the snazzy concept of 'sensor augmented pumps' (and why wouldn't you be?) the basic idea is that you combine an insulin pump and CGM (continuous glucose monitor) into one device. At it's simplest, the pump acts as a receiver for the sensor glucose and allows display of current glucose values and can alert the wearer if levels are rising, falling or generally going off kilter. The really clever stuff starts to happen though, when the pump uses an algorithm to act independently on the basis of the received sensor glucose values. On my MM640G I allow Threepio to silently and automatically take action and cut off my basal insulin if my BG is predicted to fall below 3.9 within 30 minutes. This has saved me countless low level hypos whenever I have been able to afford a sensor. If you're interested in the details there's a little animation explaining how this works here.

The MiniMed 670G adds extra oomph to the mix by also having the ability to increase basal insulin where sensor glucose is rising. Gary Scheiner, who wrote 'Think Like a Pancreas' wrote a review of the MM670G after it launched in the US which has a good deal of detail if you are interested, but which also prompted several questions for me.

What I thought I knew
The MiniMed 670G uses two main targets, neither of which can be changed by the user. Overall it aims to direct your glucose value towards 120mg/dl (6.6mmol/L). Where it is taking corrective action for elevated sensor glucose, it aims towards a target of 150mg/dl (8.3mmol/L). These were the launch values in the US, and will be exactly the same for the UK version.

A number of options that experienced pump users might expect to be able to use (temporary basal rates, dual (combo) wave, and square (extended) wave boluses are unavailable in auto mode.

From what I can tell, things like differing basal patterns for weekdays/weekends do not apply in auto mode either.  Nor can you alert the system that you are about to undertake exercise in advance.

In fact there seems to be very little you can adjust and tweak in auto mode aside from insulin:carbohydrate ratios and Duration of Insulin Action. If you are planning to exercise you can temporarily set the pump to aim for the higher target, but that's about it.

All of this may fill you with dread and impending frustration. Or it may elate you with gratitude of being able to hand over responsibility almost entirely.

Users can, of course, use the pump in 'manual' mode whenever they wish. This would give them effectively the same choices/options as the MM640G, but doesn't take advantage of the additional automation on offer.

Is there anything else like this?
No. Well... not regulated, approved and currently commercially available no. But of course the MM670G is not being released into a vacuum. There are other emerging sensor augmented pumps (eg Tandem T:slim) which incorporate predictive low glucose suspend (rather like the MM640G). Alongside which there is a growing community of enthusiastic loopers who have decided #wearenotwaiting and use a variety of homespun, and significantly more tweakable, options. Of course not everyone has the confidence to build their own diabetes device - I am assured that these are no longer cobbled together from bits of string and paperclips, but nevertheless still do require careful configuration, software and in some cases additional DIY hardware. Additionally many loop solutions currently require older out of warranty insulin pumps. This may not be the case for long, nor might OpenAPS and Loop's unregulated status continue, now that Tidepool have committed to developing Loop as a supported, regulated app available for users on a range of in-warranty devices.

What I found out
It's fair to say that I was very enthusiastic about the prospect of the MiniMed 670G about a year ago. But things are moving so fast these days, that this is already beginning to feel like an older model. And as an inveterate fiddler the idea of so few settings being settable by me is a bit... well... unsettling.

What I found very interesting, was the observations Medtronic have made from 3.2 million days of data since its launch in the US. Essentially, they suggest the MiniMed 670G tends to work better in people who don't fiddle and try to come up with their own ways of working around not being able to alter settings. Often people who are new to an insulin pump, who have not already built up a library of hacks, tricks and strategies to bully their pump into doing what they want it to. People who simply give the MM670G the information it requests and heed the alarms, who keep the sensors well calibrated, and who count and supply carb information of meals and then let the pump do its thing, are the ones who tend to get the better results.

I am aware from my own relentless tweakery that at least some of it is frequently down to constant changes in insulin sensitivity and insulin need (and working around times when my pump settings aren't quite right).  I suspect that one of the main reasons behind the lack of tweakability on the MM670G is the closely guarded algorithm. This updates up to 17 different parameters at midnight every single day, based on the previous 24 hour's worth of data along with a rolling average of the previous 5-6 days. Essentially the pump is continually adapting and tailoring itself to you. So those unmovable targets may not seem to be what you have chosen, but the intention of the MiniMed 670G is to keep your BGs as stable as possible to increase your time in range, to reduce glucose variability and to reduce hypoglycaemia to almost nothing. At least... that's the idea. Medtronic are quite upfront that this is the first iteration of this algorithm, based on dozens and dozens of research papers, and that it is intentionally cautious. Other more 'aggressive' versions with greater user control are being strongly hinted at.

A consequence of the 'machine learning' of the pump adapting to you as an individual though, is that it does take a few days of sensor wear for auto mode to become available (48 hours from midnight following sensor start). I'm not exactly sure how that would impact occasional-sensor-users like me, who cannot afford full-time coverage, but it's clear that only a portion of each sensor for me would be auto-able. In theory sensors can be restarted just as they can on earlier enlite-using pumps (sorry Medtronic!), but this newer pump uses Guardian 3 sensor technology, and because the MiniMed 670G has more control over insulin delivery it makes more checks that the sensor data being received is of high enough quality. Without having used it, it's impossible to tell whether it would get twitchy and drop restarted sensors earlier than I am used to.

Case study
It was a delight to meet Rob Howe a Texan ex-pro basketball player and MiniMed 670G user. Tall, slim, athletic, and with that easy, effortless charm that seems to be the gift of so many Americans. He shared his experiences and took part in a Facebook Live broadcast after which we were able to ask more questions.

Rob was an enthusiastic MM670G poster-boy, and having moved from MDI/CGM to an insulin pump with an impressive HbA1c of around 6.2% (44mmol/mol) he was obviously no slouch when it comes to BG juggling.

When asked about changes he had noticed during his year on the pump, one of the most striking was that his regular weekly order of two 1 gallon containers of orange juice he kept in his fridge to treat overnight hypos started to go off before he could use them. They simply weren't needed any more. As a basketball player and all around active type, he also seems to have put the MM670G through its paces exercise-wise, from high intensity BG boosting sprints/weights to longer distance runs of 6-10 miles. Rob was able to keep the pump connected throughout exercise and allowed it to manage his activity, with great success it would seem. Initially Rob said his HbA1c rose a little, perhaps up to the mid 6's (48mmol/mol), but seems to have settled back to the low 6s since. So while the fixed settings on the MM670G algorigthm seem to target an HbA1c of approx 6.7% (50mmol/mol), it looks as though, once again, Your Diabetes May Vary.

What next?
It will be fascinating to see more accounts from real users 'in the wild' across Europe. Several people in the group were about to start with MM670G in November. There was an extended discussion during the end of the afternoon where bloggers raised concerns and questions. There are plans to subtly alter the materials and structure of the MM6xx cases to help avoid those battery compartment cracks (which in turn will mean Medtronic don't have to replace those pumps), plus small alterations to clips, and clip rails. Medtronic are planning a version of the MiniMed 670G which will be able to communicate to phone via Bluetooth. It is notoriously difficult to predict how long it might take to get devices through regulatory approval (and goodness knows what additional chaos Brexit might add to the mix for us in the UK), but reading between the carefully veiled lines it seemed that they were hoping it might be in the next year or two. No promises etc etc. Perhaps even more interestingly... this version of the MM6xx series would have the ability to receive updated software/firmware after distribution. This is something that Medtronic have been inching towards for some time, and could significantly accelerate the takeup of new and better pump versions where the hardware is essentially identical, and it is only the algorithm which needs updating.

One thing is for certain. The rate of change in diabetes devices doesn't look to be slowing down any time soon.

Disclaimer. Medtronic Diabetes invited me to attend the MiniMed 670G European launch in Switzerland. They paid for my economy travel, transfers, accommodation, the welcome meal and lunch at their offices. I wasn't asked or paid to write this blog post or any other social media posts connected to the event. They also included a nifty little Medtronic branded battery power pack thing in a 'welcome' bag. Oh and a pen too.

Posted by on Friday, 5 October 2018

Fight For Flash in Bristol - Diabetes UK

The last remaining island of 'NO!' in the South West
It was great to get together with 30 or so people with diabetes and DUK folks last night in Bristol to consider how to challenge the local behemoth BNSSG CCG (Bristol, North Somerset, South Gloucestershire) to rethink its current 'flat no' position on prescription of Freestyle Libre in the city and surrounds of Bristol.

The event was organised by local legend and all round good egg Sandra Tweddell, who works and campaigns tirelessly to improve the lives, opportunities and experiences of PWD. Sandra called on the wonderful folks from the South West office of Diabetes UK who set up and supported the event.

Bristol's expansive CCG extends to areas around the city, and depending on which of the maps I found online are the most up to date is either one of the last or absolutely the last CCG in the South West to approve Freestyle Libre for prescription. The CCG initially dismissed Libre despite strong support from local specialist diabetes Consultants and DSNs who submitted a very strong case document outlining the potential benefits and cost savings, and national position statements from RMOC, Diabetes UK and the Association of British Clinical Diabetologists.

It is slightly irritating that Bristol suggests 'lack of evidence' as one of their main reasons for denying access to Libre since it was only this year that Bristol finally stopped supplying homeopathic treatment on the NHS. One of the last areas in the country to stop funding a treatment for which there appears to be absolutely no robust scientific evidence at all. Their other, and cynically I might suggest more pressing reason, is a substantial budget deficit. An eyewatering £58 million black (or possibly red?) hole in their finances which is inevitably applying significant pressure on their committees to not pay for anything they absolutely don't have to. It is also striking that while Bristol has internationally recognised specialists and expertise in diabetes research, some of the outcomes for treatment leave a lot to be desired - our record for lower limb amputations ranks as one of the worst in the country, for example. 80% of the UK entire budget spent on diabetes goes on treating complications of living with diabetes. When it goes wrong, we are very expensive to treat.

Dividing into small groups to brainstorm.
The event attracted a wide variety of people, from those diagnosed 40+ years ago, to others with less than 12 months of pancreas impersonation under their belts. After a brief introduction by Diabetes UK's Stefan, we gathered in small groups to brainstorm ideas on 3 different questions: Why do we think the CCG is denying Freestyle Libre in the area? What could we do to convince the CCG to change their minds? and Who could help the campaign?

An absolute torrent of ideas followed. The CCG's position seems fairly entrenched at present and revolves around a perceived lack of evidence, very real financial constraints and perhaps a lack of understanding of the nature of diabetes and how a piece of monitoring technology genuinely can help. Encouragingly discussions inside the CCG are still ongoing (perhaps they are already feeling the pressure) and Diabetes UK is meeting with them later this month. We seem surrounded by people who can help to remove the postcode lottery - several of whom are in positions of significant influence. Everyone's second favourite NHS England Associate National Clinical Director for Diabetes, Partha Kar is making 'gloves off' murmerings where CCGs are resisting Libre and maintaining the postcode lottery, while Keith Vaz and the APPG are mustering Parliamentary support.

As Libre has rolled out across the country and clinicians have begun to share the transformation in quality of life and hard-data outcomes that Libre is bringing to their patients, there surely will come a point where these can no longer be dismissed as merely 'anecdotal'. We were keen to find out exactly what was 'lacking' about the evidence that the CCG had already reviewed, and specifically what sort of evidence they were looking for.

It was great to see the enthusiasm in the room. A real desire to challenge the decision, to clarify the potential benefits to the correct population of PWD (and the potential cost-savings that can result both in the short, medium and long terms). Added to which the annoucement of a CE mark for Abbott's shiny new Libre2 at EASD this week which offers the option of alerts and alarms that many Libre users have been wanting for so long. And the current news seems to be that Libre2 sensors and its reader will cost exactly the same as Libre1.

The meeting closed with commitments to keep up the pressure, write to MPs, involve the local press, liaise with local HCPs and specialists. There are plans to gather more information and case studies of the benefits & cost savings other areas are experiencing (particularly where these include substantial short-term savings eg for hypoglycaemia and DKA admissions). There was also a genuine desire to try to get in front of the CCG in person and/or as a group. I may have accidentally suggested going mob-handed to the CCG AGM or a similar public meeting dressed as Jelly Babies. A Flashmob, if you will.

Watch this space.

Posted by on Monday, 11 June 2018

No two days - Diabetes Week 2018

Ugh. Good morning to you too.
Apparently this week is Diabetes Week.

Me neither.

If I get the chance I will try to rattle in a post about the excellent #languagematters work that is being launched this week which hopefully will provide useful pointers to healthcare professionals and people living with diabetes who are trying to have more positive, more enabling, less stigmatising conversations.

In the meantime I have other things on my mind. Because as I posted recently on Twitter my diabetes has been behaving in a peculiarly cantaknerous way recently and I don't see why I should suffer that alone, so I'm inflicting it on you lot.

We've toyed with a few different straplines for our blog over the years, before we settled on the current one, "Because no two days with type 1 diabetes are the same. Except when they are." Which I liked because it was a) slightly annoying and b) didn't really make much sense. Both attributes shared by type 1 diabetes itself.

It is part of the unending joy of playing at being your own pancreas that you are perpetually caught in the tension between the illusion of 'diabetes maths' (deliver x units of insulin to process y grams of carbohydrate plus or minus z percent for activity/illness/alcohol/whatever) and the reality of living with a condition where the sheer bewildering number of variables that might combine, contradict, multiply or cancel each other out, when trying to calculate a precise (or sometimes wildly guessed) insulin dose, mean that it can be extremely difficult to work out why things have gone well, or not quite so well.

As a defence, some of us pancreas pretenders with a few years under our belts attempt to find some ways of reducing the number of variables without expiring from sheer boredom. It's a kind of coping strategy and it can work quite well up to a point. I have eaten pretty much the same breakfasts and lunches for more years than I care to remember. A regular rhythm with slight differences for weekdays and weekends (craziness!) but generally, more often than not, a known number of slices of a single brand of bread along with a medium-sized apple at lunchtime, and a not very adventurous range of fillings/toppings. It is functional eating. Designed to be predictable. Well tested. Evening meals I tend to eat a much wider variety.

And this regularity provides a useful touchpoint. Because as I said this strategy is only successful 'up to a point'. And that point is where something else changes. You have the normal food, you take the normal dose alongside the normal background insulin and the normal level of activity. But suddenly you see anything but normal blood glucose outcomes. If everything is changing all the time, with all sorts of different meal choices/fat contents/dose requirements, it is much harder for me to spot when my diabetes has joyfully shifted the goalposts (again!) and when I need to slightly adjust basal dose or meal/correction ratios.

I've been happily using this technique for years now. And my diabetes and I have got into a sort of gently seething stalemate. I fix the ratios/basal/correction factor. A week or two pass... a small basal tweak is required... then another... then another... And every month or three perhaps a larger overhaul might be required. The basal pattern might slightly change shape, or carb ratios and correction factors may need to be adjusted. Blood glucose normality (Ha! By which I mean the generally expected levels of BG chaos) resumes. Up a bit... Down a bit... Down a bit... Back up a bit. And so my diabetes world turns.

Something odd
More recently I have been seeing something much more unusual, unexpected and irritating going on. But such is the chaotic and fickle nature of living with type 1 diabetes, that it's taken me a while to even spot it was happening, and realise that over the past 2-3 months it has been developing into a bit of a pattern.

The perils of CGM
In a sense, I wonder if I might have spotted it sooner if I'd had less access to CGM. It sounds bizarre, but the difference for me between living with CGM and living without it is that CGM frees me from needing my diabetes to behave predictably. I am able to roll with it and adjust as I am going along much more freely. But that freedom, ironically, may come at a price. Without CGM, I need my diabetes to be much better behaved. I need to know that I can do x and (more or less) expect y to happen without watching it unfold, or being alerted if things are going off-track. I've only been wearing CGM occasionally this year, but it's probably been 50-60% of the time. And that's a lot of weeks of 'adjusting on the go'. Having run sensor-free for 2-3 weeks I realised how much I had lost my fingerstick BG mojo (especially after a full year with quite heavy CGM/Libre use in 2017).

When the weirdness started happening and I was wearing sensors I just worked around it. It has only been since running sensor-free for a few weeks that I've needed to look at the root cause to try to get things back onto an even keel when I'm not able to watch what's going on between the dots.

Pattern spotting
What seems to be happening for me recently, at lunchtime and even moreso for evening meals, is that the speed of absorption of previously predictable meals has substantially changed. While I used to be able to take doses all up front with 20-30 minute delay before eating at lunchtime, and immediately before eating evening meals, I am now needing to use dual waves to substantially delay insulin delivery so that the late arriving food still has insulin available.  What had been happening was a post-meal period where an initial sharp BG rise was followed by a prolonged dip (needing multiple carb top-ups to prevent hypos while the meal dose was working at full strength) followed by a later rise into double figures as the food absorbed when the insulin was on it's way out. Many T1s will be familiar with this 'pizza effect' where the fat delays carb absorption - but suddenly I was seeing it with previously very predictable and cooperative foods.

I can't explain why this has suddenly become necessary. I'm not sure I even care to be honest. Especially since breakfast seems to have been entirely unaffected and is proceeding as it always has. Typical type 1 diabetes. It can't actually make sense. It just has to set new 'rules' for that thing, but leave that other thing as it was. And in another month? It could all change again!

The good news is that I have made some decent progress in the past few days to find a set of splits and timings of dual wave doses that seem to be working better for lunches and evenings (and reduced dose ratios to boot). I will pop a sensor to see a bit more detail in the next few days.

Hope the BG gremlins are giving you all a bit of peace.

Posted by on Tuesday, 15 May 2018

Feeling lucky at the Houses of Parliament.

Abbott's Jared Watkin, Robert Courts MP for Witney,
Lord O'Shaughnessy and some scruffbag on the end.
A week ago today I had the unexpected honour of being invited to the Houses of Parliament to a Parliamentary Reception on 'Innovation in Diabetes Care' hosted by Robert Courts, MP for Witney. Not your usual Tuesday.

Not only that, I had been asked to give a brief chat about the impact of technology on diabetes self-management.

The event was put together by everyone's second favourite flash glucose device manufacturer Abbott Diabetes Care, and it was great to bump into some familiar faces, including Diabetes UK's Chris Askew, as well as lovely folks from the Health Innovation Network, and various other luminaries, civil and public servants interested in healthcare. It's a bit unnerving to asked to speak to a room where speeches and introductions have begun "my lords, ladies and gentlemen" without that just being a jokey thing to say.

There was a buzz at the reception about access to diabetes technology, its importance and how access can be improved and made more consistent across the UK. Naturally there was mention of the emerging Libre accessibility map, but this was about more than just that one device. It was about recognising how far diabetes care has come, and the potential improvements to outcomes that have become possible.

Robert Courts, who is the MP for the constituency which is home to Abbott's shiny manufacturing plant spoke first, before handing over to Jared Watkin, the (surprisingly Welsh) president of Abbott Diabetes Care. Lord O'Shaughnessy Parliamentary Under-Secretary of State for Health later spoke about the Government's Life Sciences Industrial Strategy and promoting swifter access to breakthrough technologies.

For my own small part I opted for three 'I feel lucky's.

I feel lucky I wasn't diagnosed 70 years earlier. I was diagnosed in 1991, and it was only 70 years earlier than that good old Banting and Best made their breakthrough discovery. Now we all know that living with type 1 diabetes is fraught with tales of lost feet, fried eyes and defunct kidneys, but it really wasn't all that long ago that us pancreatically challenged types really were not expected to last very long at all.

I feel lucky that it's 'only' diabetes. Now this, of course, is one of those phrases that you are only allowed to say if you have diabetes yourself (and even then only if you have the specific type to which you are referring). Having said that, and for all the looming spectres of physical and mental long-term complications, and the never-ending infuriating drudgery of the whole silly game I have often found myself musing that if I had been taken into a side room at the Drs on that fateful day 27 years ago and been presented with a table laid out with all manner of options, "We are sorry Mike, your number has come up and you have to have a long-term condition. Here they all are, with their pros and cons - you just have to pick one." I half wonder whether type 1 diabetes wouldn't have been a pretty good choice. You can eat pretty much what you like, within reason. You can do almost anything you want to. It doesn't stop you doing very many things that you might want to. You can actively work towards improving your situation and try to avoid the looming nasties. You can run a business. Run a marathon. Raise a family. And many people live long and healthy lives alongside it.

And I realise that much of my optimism stems from the advances in technology that I have seen over the years, and I'm thinking of technology in the broadest sense - gadgets yes like monitoring, insulins and insulin delivery, but also education and support networks.

I feel lucky that there has never been a better time to be diagnosed with type 1 diabetes. Which is probably a good thing because ever increasing numbers are joining our happy band. Even our own PM couldn't resist getting in on the fun. But the improvements in the technology and understanding we have available to us (at least available in theory) make the possibility of normal blood glucose outcomes tantalisingly close. And when you consider the emerging semi-automation of insulin delivery technologies alongside continuous glucose data, then the burden of self-management looks likely to reduce in the coming years.

I see access to technology (alongside education and support) as key in shifting the balance between the 80% of the diabetes budget currently spent on treating diabetes complications and the 20% spent on trying to keep people well. We may not be able to get those proportions to swap around, but I'd love to get things nearer 50:50 - hopefully by significantly reducing the financial and personal cost that comes when people with diabetes really struggle.

Oh and if all else fails, 'the cure' is only 10 years away too. Isn't that right Dave?

Disclaimer. Abbott Diabetes invited me to share my experiences of diabetes technology at the Parliamentary Reception, paid my travel expenses and offered a modest honorarium for my time at the event. They also laid on some tasty sandwiches and a very nice custard tart which I miraculously managed to carb-guess and SWAG bolus. I wasn't asked or paid to write this post or asked to mention any Abbott products in anything I said, which is lucky really because I pretty much didn't.

Posted by on Thursday, 22 March 2018

T1DCC at the Diabetes UK Professional Conference 2018

Last week I was able to sneak in to the halcyon halls of the Diabetes UK Professional Conference for the day.

I have been appointed as one of three PWD/people with diabetes/diabetic/lay/patient* representatives on the ABCD T1DCC. Oh yes. A PWD on the ABCD T1DCC - that's me! Diabetes is all about the abbreviations, and why bother with inclusive language when you can just spout forth with endless baffling acronyms and confuse people - that's what I say!

*whichever irritates you the least

The ABCD is the Association of British Clinical Diabetologists, and their T1DCC is the Type 1 Clinical Collaborative, which was being officially launched at a presentation on Wednesday afternoon. You can find out more about the collaborative here but essentially it is an initiative that seeks to support and improve care in type 1 diabetes, sharing best practice, guidance and support for healthcare professionals working in the UK. The T1DCC seeks to support improvement across 6 areas:
  • Pumps and technologies
  • Health care professional education, training and workforce issues
  • Patient education
  • Whole of life
  • Enabling success
  • Quality improvement
and along with two other pancreatically challenged types I am looking forward to chipping-in to the discussions and conversations as they arise.

The T1DCC presentation was divided into short sections. Chair Rob Gregory introduced the Collaborative itself. Emma Wilmot shared new downloadable Diabetes Technology Network 'best practice' guides for insulin pump therapy in adult clinics and also for inpatient settings. Anne Kilvert shared about quality improvement and the T1 Services Audit. Helen Hopkinson spoke about DAFNEplus which builds on the success of the UKs foremost educational programme for people with T1. Sophie Harris gave a presentation outlining the power of peer support networks for PWD, and how t1resources.uk can offer clinicians and PWD a set of searchable, trusted resources. Partha Kar spoke about the possibility of an emerging digital platform for T1D. The session ended with a panel discussion.

If your name's not on the list, you're not coming in
As is customary with the Diabetes UK Professional Conference there was a good deal of difficulty with being allowed in as a mere person with diabetes (which is always put down to some obscure rule about pharma being explicitly forbidden to advertise directly to members of the public, which tickled me as I saw this pharmaceutical advert on the way to the conference). However the PWD reps were allowed to attend as we were listed as 'speakers' at the presentation, so I was able to arrive a little early and managed to get to see some excellent sessions.

Widening access
To their credit, Diabetes UK did try something radically different this year in terms of widening access to some of the conference content to non-professionals. An extra 'Insider' day of the conference was added on the Saturday, which was only open to people affected by diabetes and condensed some of the main conference sessions from the previous 3 days. Everyone's second favourite Nightscout-Guru-Diabetes-Dad, Kev Winchcombe has written a rather good post about the Insider day. DUK also invited a couple of familiar PWD peeps to tweet from the main conference itself, so more of the content was shared, which I for one was very glad about. The lovely Ros from Type 1 Adventures writes about her take on the main conference and Insider event here.

Other stuff from the day
As with previous times when I have managed to attend the DUK Professional Conference, the day was an absolute whirlwind of fascinating sessions, with hastily grabbed coffees and chances to bump into familiar faces.

Psychological support
It was heartening to see the profile of psychological support being raised this year. The first session I caught was entitled 'Weaving psychological principles into routine care' with Debbie Cooke, Christel Hendrieckx, Jen Nash, Lisa Newson and Cathy Lloyd speaking about the pivotal importance of psychological support for people with long term conditions. There are downloadable resources from the Australian Centre for Behavioural Research in Diabetes (both for HCPs and people with diabetes) which are well worth checking out.

The discussion also extended to the language used in clinical interactions and looked to the #languagematters work underway nationally in the UK. 


Beyond A1c
A fascinating session about HbA1c, glucose variability, continuous data and 'time in range' which matched much of my lived experience. The suggestion from US clinician Ann Peters was that while HbA1c is still a useful research measure, it is increasingly being eclipsed by the usefulness and richness of continuous data. The same HbA1c can hide a multitude of different experiences of diabetes, and even significant challenges such as Severe Hypoglycaemia cannot effectively be predicted by A1c alone -  severe hypos can happen across a range of A1c's and have more to do with glucose variability than whether your HbA1c is above or below 7%.

Emma Wilmot's part of this session focussed on improving access to technology. She began with a slightly shocking statistic that the average UK HbA1c for someone with T1D is as high as the 'control' arm of the celebrated DCCT trial (1983-1993), which is still relied upon to show the benefits of intensive glucose therapy. For all the years that have past, fancy insulins that have been released, and technology that has begun to be adopted, on average people with type 1 diabetes in the UK are still only achieving those 'non-intensive' outcomes, with all the increased likelihood of diabetes complications as a result.

It was also heartening to hear in this session that our concept of what is meant by 'normal' blood glucose may be changing. When you are pretending to be your own pancreas it is easy to assume that 'nonnys' always exclusively live between 4.0 and 7.0mmol/L no matter what they do and what they eat. But as more people without diabetes are wearing continuous glucose monitors for a variety of different reasons it is becoming clear that even when you have a fully functioning pancreas there can still be quite significant glucose variation.

Inspired
Once again I left the Diabetes Professional Conference exhausted and genuinely inspired by the passion of healthcare professionals, researchers and academics.

It was wonderful to see an emphasis on person-first care, tailored to each individual. A desire to see the right technology used in the right way for the right people. To treat the whole person, body and mind to support them towards better self-care and better outcomes. It is clear that there is much left to be done, but the desire to make better progress is tangible.

Managing diabetes is a tricky old business, but these people really do care and really are seeking to improve outcomes for all of us pancreatically challenged types.

Disclaimer. Diabetes UK supplied me with a free one-day pass to the conference as a speaker. The T1DCC kindly paid for my train ticket which was very nice of them. I was not asked to, or paid to write this post. Your diabetes may vary. Blood sugar can go down as well as up.

Posted by on Saturday, 10 February 2018

Thanks a bunch - Spare a Rose 2018

I'm sorry to break it to you folks, but things don't look very good for 'us lot' in the event of a zombie apocalypse. But in the world as we know it, where a life-saving medication has existed for nearly a century, it is horrendous to think that people, particularly children, might die for lack of insulin. But they do. For all our 21st Century self-congratulation about the ever-shrinking world and our technological marvellousness, access to healthcare remains far from universal - even in the allegedly 'developed' world. In poorer countries insulin may be all but impossible to acquire, or afford. And without insulin, we die.

It has been great to see quite a bit more attention given to the annual 'Spare a Rose' campaign from folks in the UK this year.

There is something so elegantly simple and profound about the 'Spare a Rose' concept. It takes a gesture of affection, a token of love, a symbol of intent - one which is so inherently transient and passing - how long to those roses last? A few days perhaps? And turns it into something genuinely powerful. Something almost heroic - saving the life of a sick child. The cost of a single rose equating to a month's worth of insulin.

Spare a Rose addresses so significant a need for people living with type 1 in some of the world's poorer countries. I think it's something everyone living with type 1 diabetes in the UK has considered, even if only in passing, at least once since their fateful diagnosis day. What if I lived somewhere else? What if insulin was very hard to get hold of? Or impossible to afford? There but for the grace of God...

I first came across the idea of Spare a Rose a few years back, and the campaign itself dates from 2013. A few of the great and the good of the #doc have enthusiastically supported the idea, particularly in the US where the idea began. The surge of attention in the UK this year is largely down to everyone's second-favourite irregular-blog-posting chucklefest Chris 'Grumpy Pumper' Aldred. Historically the UK's contribution to this particular charity pot has been rather on the small side, but I suspect, with your help dear reader, that things could be rather different this year.

'Spare a Rose' resonates, I think, because it focuses on a celebration of love. It takes the familiar commercial overindulgence and perhaps asks us to think about what it really means to express love, or care, or affection for others. Both those close to us, and also those we have never met. The idea is that you give one fewer rose to the special someone in your life, and donate that small saving to provide insulin and education for a child with type 1, living in some of the world's less resourced countries. Spare a rose, save a life. And it says something wonderful about people with diabetes coming together and connecting for the common good. Lots of people, giving not very much, all around the world, adding up to literally thousands of saved lives.

Something significantly more than the sum of its parts.

If you would like to save a child's life today, visit lifeforachildusa.org/sparearose and do something amazing.


If this subject has caught your attention and you'd like to know more about projects seeking to ensure global access to essential treatment for people living with type 1 diabetes I'd also suggest you look into #insulin4all which is an initiative of T1international.