Hot and Cold

Some musings on the joys, oddities, encouragement and occasional knock-backs of invites to diabetes events...

Lanyards, obviously. 

Apologies for the radio silence of late. I meant to write this post months ago, but somehow never quite managed to grab the time for it. Initially I had planned several posts each detailing different events and experiences, all fascinating and full of wit and laugh out loud anecdote, but eventually they all began to coalesce around a single theme of confused grumpiness, so that’s what you are getting instead.

I was lucky enough to be invited to a number of diabetes events in 2019. It’s always an honour and a privilege to receive an invitation, and in no way do I want this post to read as my being in any way ungrateful, or my taking those invites for granted. Because I absolutely do not. I am fully aware of my rare position of being offered an invite - a seat at the table - and it is not something I take lightly. At all.

Sometimes I was invited by device manufacturers, other times by pharmaceutical companies, or diabetes charities, or healthcare professionals and researchers. Sometimes I was invited to speak, other times I was invited to listen, or perhaps to participate in discussion and conversation on some diabetes-related topic or other. My travel (and accommodation if needed) was paid for by the inviting organisation, and the events are always fascinating with much for me to learn and take away. Sometimes they were in the UK, but my travel and attendance at EASD in Barcelona formed part of my year - a first for me, and every bit as enormous, interesting and ever-so-slightly overwhelming as I had imagined it might be. Except perhaps more so. (EASD is the European mega-conference for those working in the field of diabetes, it is mindbogglingly big).

Hot
Almost without exception my attendance at events is surrounded by enthusiastic comments about the importance of hearing the ‘authentic voice’, the lived experience; the punter’s-eye viewpoint. Having people with diabetes at these events seems broadly welcomed and encouraged by most healthcare professionals. Many say how important it is. How vital to hear from and connect to people who live with Diabetes day to day, to hear their experiences, and to listen to their stories. When I’ve been asked to speak, the feedback forms have been overwhelmingly positive, almost to the point of embarrassment. Clinicians anonymously feeding back that they are intending to change their clinical practice because of the experiences and thoughts they have heard from people living with diabetes. “Best talk of the day”, “So important”, “Much to take away from this”... the welcome could not be warmer.

When I was appointed to be one of the ‘lay’ members of the NICE Guideline Development Group for T1 in Adults, we had training and support to help us unpick the clinical data that we would be asked to review. It was made very clear from the outset that our voices and contributions, though entirely without medical qualification, were felt to be just as important as anyone else’s on the panel. We were actively encouraged to speak up, and to ask questions - even if we suspected everyone else probably knew the answer... partly because sometimes they didn’t, and would be very glad we had asked for an acronym to be spelled out or some terminology or other explained. We were told how important our participation was felt to be. And to their huge credit, the clinicians and researchers around the table never once gave me the impression that they wished I would shut up, no matter how much they may have been thinking it privately.

Increasingly it seems research projects and clinical trials are being put together with PPI inbuilt from the ground up . (PPI being ‘patient and public involvement’ - are we allowed to say ‘patient’ this week?). It appears that in some cases, perhaps even many or most cases, funding for research and interventions depends upon clinicians and researchers ensuring that the ‘patient and public’ voice is represented, and that there are non-medical people involved in the review, and design of studies and materials.

And I think all of this is a good thing. Nothing about us without us.

But...

From the very first ‘big thing’ I went to (Diabetes UK Professional Conference if I remember rightly), it was clear from the outset that we PWD didn’t belong.

Cold
“It’s the regulations I’m afraid...” “Nothing we can do...”

My first visit to the annual DUK professional conference involved me being ‘co-opted’ as a blogger onto the Press Team. As a person with diabetes I was not allowed to be there. I was not welcome.

Mostly this is because of fearsome pharma regulations, which forbid the advertising of almost all pharmaceuticals directly to the general public (hay fever and headache tablets etc aside). Significant fines and penalties hang like a Sword of Damocles above the quivering pharma multinationals who cower beneath it. If you happen to live with T1 diabetes and also be a journalist... or work for a pharmaceutical company... or a diabetes charity... or a device manufacturer... you appear to be immune to the devastating potential impact of walking past a poster for a new T2 medication. But as a mere PWD mortal? Perish the thought.

And this strikes me as a little odd. Because. The internet.

In a world in which I can look up published research papers on Pubmed, or any number of research outlets,  I wonder how damaging it really is for me to see those research results presented and explained, along with lots of context and clarification at a conference. I wonder how much difference there is between reading a article by a journalist about a new medication, thinking it sounds promising, and then asking your clinic about it, versus seeing a poster in an exhibition hall as you walk through to get a coffee. At EASD, while I could attend sessions, there were large ‘no entry’ posters at the entrance to the exhibition hall forbidding my entry.

And these regulations are clearly terrifying. At one event I attended last year as a guest speaker, to give my experience and thoughts on diabetes appointments (a blog I really must get around to writing) I was not even allowed to go and choose my own lunch. Some exhibitors, getting wind of my attendance had made the organisers agree *in writing* that I would be chaperoned from the moment I arrived in my car. I had to wait in the reception area, and be taken to a special side room, accompanied at all times. Then someone went to choose a few things for my lunch (because the exhibitors were in the same space as the food). And when I had finished my talk, I was accompanied straight back to my car and I drove away. No time to chat to clinicians. No way to hear anything else. This sounds comedically extreme (and in fact it was) but I’ve heard from others who have been asked to speak and who have been similarly chaperoned, lest their eyes should wander or they stumble upon a discarded leaflet for PintoDactoTrophomax10 and expire from the shock.

I am sure the regulations were put in place for very good reasons (witness the bother we are currently in, with antibiotics after overuse driven in part by people going to their GP and demanding them for a viral infection). But really? I genuinely don’t believe they are fit for purpose any more.

How often do we see a news story about some new drug or therapy that has been deemed insufficiently effective for widespread use (or too expensive... or both). And parents and supporters are campaigning for access for little Johnny, or attempting to fly overseas to acquire the treatment there.

The law is an ass, so they say. And this pharma law seems doubly so. It is a hindrance. And it’s not doing the job it is meant to do.

But the thing that I find most troubling about this particular regulation in terms of diabetes, and my own experience of self management is the subtext of it.

Essentially, in a sense you could read it as saying, “You are unqualified. You are not trusted. You cannot make this decision. You are incapable of understanding the complexities of the issues involved. Keep quiet and do as you are told.” I know it isn’t actually saying that. But I think also... in some ways, it is.

To their credit, Diabetes UK have tried to improve access for PWD to new research and created the ‘Insider Day’ - a one-day version of their Professional Conference specifically aimed at people with diabetes, where some of the content from the main conference can be shared in a way that satisfies the rules. But does this (as great as it is) create a two tier ‘dumbing down’ structure? A watering down to make things more palatable and easier to digest? Conference Lite.

Spoiling it
The other slightly odd thing about getting some of these invites, particularly to the larger events, and where I have been asked to speak, is that some HCPs really wish we PWD weren’t there and would go away and leave them alone. Anonymous feedback forms (you do realise we get those to read afterwards, right?) which are completed with the apparent intention of reflecting this opinion back to organising committees... are also read by the people that give the talks. Some HCPs have suggested in the clearest possible terms that they thought my contribution added absolutely no value at all to the event, and they would much prefer it if I had not been invited to witter on inanely at them. I am not quoting, you understand... but the sentiment was pretty much there.

I completely understand the opinion of some HCPs that they would prefer their ‘own space’, and sometimes I see exactly the same wish expressed by people with diabetes about meetings or online spaces. Some people’s preference is to have a place where they can be, and share, and exchange thoughts with just their peers present. With no need to accommodate the sensibilities of others. I can see that sometimes you just want to have natural (unguarded?) interactions with your own. To kick back and not have to worry about minding your Ps and Qs lest someone gets the hump. Even the most supportive and passionate advocates of PWD involvement have been known to express this desire.

So I do understand it. But also I genuinely value an open interchange between n=1 lived experience and profound clinical and specialist expertise. I think that while there is a desire for PWD involvement in the conversation, being chaperoned, excluded, not trusted, and made to feel uncomfortable isn’t very helpful for anyone. I think we have much to learn from each other. I’ve seen some conference presentations that have made my head spin with the complexity of it. I’ve not understood all of it by any means, but when something is well presented, even if way above my understanding, I absorb the main thrust of the content, and find I remember it and can apply some of the complex physiology (or whatever) to my lived experience.

I also think being in a mixed environment helps to create and maintain respect (though sometimes this seems spectacularly absent in online spaces). I think sharing spaces can create empathy and understanding. It’s not like we are on ‘different sides’ right? Clinicians, researchers and industry want us to have better outcomes, and that’s exactly what we want too.

I do believe it is possible for both clinicians and PWD to express their authentic, honest experiences, and also maintain respect, and behave with kindness and courtesy.

I look forward to a time when the regulations change, and involvement (or exclusion) is done more openly and intentionally, not under the veil of what seems to me to be a rather outdated rule book.

I’d love to hear your thoughts.

T1D Rise of the Machines 2 - February 2019

Not the machines you are looking for... Public art near TechUK.

This time last week my mind was well and truly boggled by this point in the day by a torrent of information and the potential of shiny new things just around the corner (or already here). I was attending Type 1 Diabetes: Rise of the Machines #2 as a +1 of Kev Winchcombe, the #GBdoc's second favourite Nightscout Genius and holder of the Self Deprecating Diabetes Dad of the Year Award for the 9th consecutive year.

I'd heard a bit about the first Rise of the Machines last year and it sounded really interesting. The opportunity to go was actually very timely for me, because almost unbelievably this year sees the 4-year warranty expire on Threepio, my trusty and occasionally SmartGuarding MM640G insulin pump. As a result I am beginning to consider what options might present themselves for me to try next. The pace of change in diabetes technology seems so rapid at the moment that it's very hard to keep up with what has launched, versus what is being massively plugged but is still confined to the drawing board, versus what has technically launched but remains unavailable to anyone as no clinics either have them or are trained and equipped to dish them out. As an additional complication there are now various grassroots home grown combinations of different technologies that allow a degree of automation of insulin delivery (things like Loop, OpenAPS and AAPS). If you've never heard of any of this stuff prepare yourself for an impenetrable minefield of jargon, abbreviations and acronyms. Luckily for you Kev has put together a very handy dictionary of terms as part of T1resources.uk.

The main opportunities for improving T1 diabetes care are:
1. Improving the ability of a person to self-manage
2. Encouraging peer support
Everything else, whether technology, clinical, education or whatever falls into those categories

Partha Kar

After introductions from Ben Moody of TechUK and Dr Partha Kar, a packed programme of fascinating presentations followed. I took copious notes thinking I might write a detailed account, but in reality there was simply too much to cover here so you will be relieved to hear that you are only going to have to wade through what struck me as highlights.

Chris Bright

Chris Bright, semi-pro footballer and futsal supremo kicked things off with an engaging and inspiring PWD perspective. How different pieces of technology had formed part of his story with T1D, and supported him in exercise, activity and sport over the last 20 years, including the establishment of the Diabetes Football Community.

Next up were industry presentations by some familiar, and not-so-familiar names. Roche/Eversense, Abbott (Libre), Dexcom, then later Medtronic, Diabeloop and Tidepool. It was very interesting that many of the speakers from the companies lived with T1D themselves. The stories from the companies shared much in common. Technology is improving and continuing to improve. The more information (data) people have, generally the better they are able to manage their T1D. Some were able to talk about semi-automated insulin delivery and 'hybrid closed loops' which have either launched or are in the works.

Interoperability - buzz word of the day

One nice feature of the day was the round table discussions that took place after the presentation slots. The first of these involved the device manufacterer speakers who got something of a roasting from an audience which included several people who are actively trying to push the available technology to work harder, and are often frustrated by incompatibility and sandboxing where different devices are locked into their own predefined arrangements or are designed only to work within their own 'ecosystems'.

Interoperability (the ability of one device or technology to speak to a number of others) was certainly one of the buzz words of the day. The device manufacturers mentioned it, including the JDRF 'open protocol' iCGM standard which in development. But they were asked pointy questions about their 'bilateral agreements' for products in the works which will be designed to only work with devices from an agreed (and presumably negotiatied) partner manufacturer.

This is certainly well in evidence in the current market place and is all too often part of announcements about future tech. So Dexcom works with x and y, while Libre are collaborating with z, meanwhile Medtronic devices mostly try not to talk to any other devices if at all possible. While this almost certainly makes sense from a company perspective, it was a source of tangible frustration from users who might find a more open mix-and-match arrangement much more empowering.

The company speakers were clearly a bit nervy and uncomfortable committing to anything, preferring warm noises about 'taking steps' and 'working towards'. Abbott's decision to encrypt the data from its new Libre2 raised quite a few eyebrows, and when the explanation offered was that it was 'for safety reasons' one audience member described such a notion as abhorrent, "It's MY data! Give it to me."

The presentations by Medtronic, Diabeloop and Tidepool also shared many similar themes. Semi-automation of insulin delivery by smart systems that learn and continually adapt to the user's insulin needs as they ebb and flow. CGM data used to make minute-by-minute adjustments to reduce risk and severity of both hypos and highs, with the user only really needing to input carb count estimates for meals. All of these systems using their own algorithms and set-ups to attempt to increase the two emerging holy grails of T1 management 'time in range' and 'quality of life'. A technology which is both extremely easy to use day to day, but which gives improved outcomes. It was fascinating to hear the few snippets of detail that were sprinkled into the presentations - as always, I suspect the devil would be in the details, and whether or not it was possible to make any of these systems adapt to your own diabetes quirks. Tidepool's significant ongoing work to get a version of the 'open source' APS code approved for use by the FDA is very exciting - initially they appear to be partnering Omnipod as a delivery system. As for Diabeloop - the large Brexit-shaped elephant in the room was acknowledged in the subsequent discussion as they will not be able to launch in all European countries at once, and we could find ourselves rather on the back burner.

3 of the best
Clinical research and HCP perspective was offered in a round-table discussion jointly chaired by Diabetes UK and JDRF. Roman Hovorka (Cambridge), Pratik Choudhary (Kings College) and Lala Leelarathne (Manchester) shared their views on the current state of diabetes research and ongoing clinical trials from Loop and APS, to islet cell transplantation and encapsulation. The significant pace of change was clearly evident. In general the move from fingersticks to more continuous data and thereafter towards more automated insulin delivery. One of the challenges ahead would be to improve access to the emerging technologies and make that access more equitable. Additionally the challenges of accurately recording and monitoring 'quality of life' in health economic terms would become increasingly important in the future. Technology that you cannot access is little use. As is technology that is so onerous to use that it makes life miserable.

A brief break for a slightly delayed lunch allowed us all to catch up and compare notes from the morning's sessions.

Unfortunately I was not able to stay for the very last session of the day, but I was able to catch the first session after lunch which involved an overview of the currently available open source options chaired by Tim Street. One of the most emotionally charged and powerful moments of the day was presented by Jacob and his mum who had struggled through the required self-build steps in order to give her sporty teenage son the option to use a closed loop insulin pump. The brief video of Jacob's birthday morning and the look on his face where he unwrapped a box containing pump, reservoir, set, Android phone and CGM sensor caused more than one person in the room to wonder if it hadn't perhaps just got very dusty in there. Jacob's mum shared that it had been on leaving the first T1DRoM conference a year before that they had decided to take the plunge.

HBA1c graph showing the moment James starting with AAPS

James Woodman's encouraging presentation detailing his own journey towards looping left many people wondering if looping might be right for them too. While acknowledging that it looks scary and formidable from the outside, both of these stories had at their heart the sense that, "If I can do it, so can you". In James's opinion, the barrier is less about technical difficulty and more about self belief. And also, I would suggest, in securing the components and consumables needed to run the various systems.

All in all it was a very interesting day, and certainly gave me a lot to think about between now and December. But I will save those ponderings for another time.

If you'd like to watch the presentations, a video of the day has been posted on YouTube here.

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.

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.

Guardian Connect in Amsterdam and #TADtalk2017

Last weekend was a crazy whirlwind of diabetes-based shenanigans! I was already looking forward to #TADtalk2017, 'Talking about diabetes' having missed the first one last year I made sure I reserved my place as soon as I was able. It looked like a brilliant chance get inspired by some fantastic speakers and to meet in actual real-life with many people that I have 'known' for years, but only as 32px square avatars and 140 character encouragements. Plus a chance to catch up again with some of the others in the #doc that I've already had the good fortune to meet up with. Altogether, not one to be missed!

Then, out of the blue I received an invitation to attend Medtronic's second 'Diabetes Community Exchange', which was to be held in Amsterdam over the same weekend. Fortunately I was able to go to the main part of MDCE, on Friday and return early Saturday morning just in time for #TADtalk2017.

I am planning to post a more detailed account of my experiences with Guardian Connect, as I'm only a week in. But so far, so interesting. It's a standalone CGM, that does not link with any current UK Medtronic pump, but what it does offer is the display of your sensor glucose readings directly on your iPhone in the Guardian app, along with an automated upload to Carelink in the cloud, which means you can grant access to your BG data to partner/parent/friends/family, who can make sure you are safe.

For now though I just wanted to post a brief video montage of my weekend to give you a flavour of what went on, including a fascinating trip to the Diabeter Clinic in Rotterdam, where we went to get kitted up with our Guardian Exchange CGM.

Diabeter
Diabeter is a specialist independent diabetes clinic which has been running since the 1970s. Their headquarters is in Rotterdam, with 4 centres in total. Diabeter is recognised as a top centre for diabetes care and research. Medtronic acquired the clinic in 2015, but I'm not sure what if any influence they have over its running - Diabeter certainly retains its clinical, brand and therapy independence.

We were able to have a brief tour while we were there and the friendly and genial Dr Aanstoot talked us through some of the innovative approaches that define the Diabeter style.

I was really impressed by the patient focus in everything they do. And in their adoption of new technologies and ways of delivering care, including a weekly 'Facebook Live' question-and-answer broadcast which is being enthusiastically adopted. The look and feel of the place if very much 'non-medical' and could be a smart advertising agency office, or cool apartment depending on where you look. Light, airy and a great sense of space and calm.

Increasingly they find that people with diabetes increasingly value ad-hoc contact via video call or telephone in preference to regular calendared appointments, though you can also go in for a conventional face-to-face meetings if that is your thing. They have their own data management system which can accept information from any of the 'usual' upload systems (Diasend, Carelink etc) and which then crunches your data into something usable and understandable. And once you have got used to the reports, they always stay the same - even if you change your diabetes technology. The reporting system can analyse your data and alert you if it spots patterns that may need your attention, or flag things up so that the clinic can approach you with a, "How are things going?" conversation - again this is a preference you can agree with the clinic.

It was great to hear that they have an experienced diabetes-specialist psychologist on hand if you need that support too.

There were lots of small details which stood out, including this in one of the 'family rooms'. "We use round tables" said Dr Aanstoot gesturing in through the glass-partitioned doorway. "Much less confrontational. We don't want to be Dr on one side telling you what to do, with the family on the other. We want to be working together."

Catching up and first impressions
It was a great opportunity to be among a group of diabetes bloggers from all over Europe, and as far away as Dubai. Both people living with diabetes and a parent of a T1 child. Sara, from Sweden, who manades her diabetes with MDI had been wearing the Guardian Connect since February. A couple of others, myself included, were wearing MM640G with Enlite sensors and were watching to see how the traces compared. For others, this seemed to be their first experience of continuous glucose monitoring. We had dinner and chatted long into the night, as people with diabetes often do. It was perhaps a slight error of judgement to find myself drinking Talisker with Kevin from Belgium, along with Bastian and Richard of #DEdoc fame until passed midnight and with a 5.20am taxi ahead of me - but I was glad to be able to make the most of my short time in Amsterdam.

Pictured: Lovely Medtronic and Diabeter peeps, plus Kevin (Belgium), Sofiane (Switzerland), Sara (Sweden), Mel (UK), Lisanne (Netherlands), Christophe (France), Richard (Germany), Oscar (Spain), Abdullah (Dubai), Bastian (Germany), Dr Aanstoot (Diabeter) and Angel (Spain).

The Medtronic Diabetes Community Exchange event continued on Saturday, but Melanie Gray (Stephenson) and I had to bid a sad farewell as we hurried back for TADtalk in London. Though it has to be said that Mel made a considerably better choice for return flight time, and was able to stay for breakfast at the hotel.

Huge thanks to Mireille (sp??) and Aurelia (sp?!) and the others from Medtronic  and Diabeter whose names I cannot remember (sorry!) for making the event so enjoyable and informative. It was an honour and a pleasure to be there.


TADtalk2017
I was really looking forward to TADtalk, having seen such inspiring coverage on social media last year. Suffice to say it more than lived up to my expectations. Brainchild of Dr Partha Kar, Dr Catherine Peters and Prof Peter Hindmarsh that sprang out of a conversation in the back of a taxi, TADtalk (Talking About Diabetes) brings together inspirational speakers who share their experience and insight into meeting and overcoming the challenges that living with type 1 diabetes can bring. The talks themselves are videoed and distributed freely, as were last years, so do go and check them out.

This year's TAD Talk was smoothly hosted by safe pair of hands and everyone's second favourite T1 newsreader, Stephen Dixon, and the avalanche of tweets was storified by Diabetes UK. The glowing lineup of speakers included Sir Bruce Keogh, Miss Jen Greaves, Gavin 'Diathlete' Griffiths, #gbdoc's cat lover of choice Adrian Long, Roddy 'insane artic marathon challenge' Riddle, Mel 'international athlete' Grey, and not forgetting 'head of all the nurses and under-the-radar T1' Jane Cummings. There are some great blog posts that describe TADtalk2017 in more detail. See type1bri.com, type1adventures, Mel Stephenson, Adrian Long, and circles-of-blue for examples.
My overriding impression in the train on the way back was one of being uplifted, supported and encouraged. Having a whispered conversation with Mel Stephenson and top Jelly-Baby organiser @type1hurdles all the way back, having only met earlier that day.

Everyone involved should feel rightly proud. And if you get an opportunity to go to one, I would thoroughly recommend it.

Watch my weekend fly by


See more video noodlings on my Youtube thinghy.

Disclaimer: Medtronic paid my travel and accommodation to attend MDCE, and laid on a tasty dinner in the evening. I was also offered a free trial of the Guardian Connect for a month. I have not been paid to write this post or any post, and any opinions on what is good or bad about the technology are mine and mine alone.

Facebooking my diabetes for #WDD2016

Monday this week was World Diabetes Day. It's is one of those made-up things that come around every year and hope to raise awareness of something or other - World Sparrow Day... International Day of Happiness... World Toilet Day... One of my own favourites is 'International Talk Like A Pirate Day', but I digress... Aaaaarrrrrrrrr!

World Diabetes Day is held every year on November 14th, good ole Freddie Banting's birthday (one of the guys who was instrumental in the discovery of extracting and using insulin in diabetes treatment). It was nice to see a WDD themed Google Doodle make an appearance, something that us pancreas-impersonators have been asking for for many years.

A few years ago, inspired by something I saw on Twitter from Scott Hanselman, I decided to document a day's-worth of diabetes interactions on Facebook as they happened. People seemed surprisingly interested, and so having given them a few year's respite I thought it was time to Facebook my diabetes again. Here's how it went...

06:22 
Slightly early start to the day but the routine is the same. First thing, even before kettle goes on is to check blood glucose level. Make small hole in finger, squeeze out drop of blood and apply to test strip. Result: 8.3. Ideally this would be between 5.0 and 7.0. Give insulin for breakfast. Estimate single slice of toast as 15g of carbohydrate (12g for the bread, 3g for a dab of marmalade). Insulin pump suggests 1.3 units of insulin for the carbs, plus 0.6u to correct the slightly high BG level. In addition I also need an extra 1u for my liver releasing extra glucose when I get up (part of the body's Circadian Rhythm). Dose delivered I will now wait at least 30 minutes to eat breakfast.

Via comments:
Regarding the carb value of bread: I deliberately choose Burgen 'soya and linseed' as it is a) tasty b) slightly lower carb and c) relatively low GI

Regarding waking BG level: The official guidelines are 5-7, I think. The 7 is to give some wiggle room for a rise after eating. Usually pre-meal guides are 4-7, but at breakfast they make it 5, because regularly waking in the 4s is associated with increased risk of undetected nocturnal hypoglycaemia which can be a real problem. 

06:50
Check pump display to remind me when I had dosed for breakfast. I have been waiting 30 minutes to eat for so long I often instinctively get this right. I thought to check at about 28 minutes today which is about perfect. I need to leave a gap between dose and food because the 'rapid acting' insulin I use is not actually very rapid. I cannot afford getting distracted though as if I wait too long the insulin could start working before the food kicks-in and my BG levels could drop too far. It's a balancing act! 

07:17
Breakfast of champions. I have tried many things over the years but this seeded bread is fairly reliable for me (everyone's reaction to different foods is frustratingly and confusingly different). It has slightly fewer carbs than regular bread - 12g per slice vs the more usual 18g - and the seeds help to slow absorption. It is anything with carbohydrate that raises blood glucose levels, not just sweet things, so that's bread, rice, pasta, most fruit, anything made with flour, grains, root veg, and then all the sweet and sugary things too. My task is to match the carbohydrate I eat with doses of insulin. And then to match the speed of absorption of the food with the timings of the doses. I cannot hope to get that right all the time. But the lingering threat is that if I get that wrong too often I am at risk of blindness, heart attack, stroke, kidney failure, limb amputation (high levels) or unconsciousness, coma or death (low levels). Fun eh! Over the past 25 years I have spent more time thinking about the potentially disastrous outcomes of my efforts to manage my diabetes than is probably good for a person's mental health. 

07:57
Time to take this moppet out for a walk. Activity and exercise need more fuel than resting and tend to make insulin work more dramatically, so I need to allow for that, even when it's something as insignificant as a 35 minute wander. My insulin pump allows me to reduce my 'background' insulin level, so I am setting a 70% Temporary Basal Rate for 45 minutes. 

08:52
Back from dog walk, just checking to see how things are going. 11.5mmol/L. This is too high, it looks as though I could have done without the TBR I set (though tomorrow might yield different results even if I do exactly the same things). Ideally this should be no higher than 9mmol/L 2 hours after eating so I am adding .7u of insulin with the aim of getting me back to 9 and leaving the insulin already 'on board' to deal with breakfast as it continues to digest. 

09:14
It's 9:14 and I realise I have already forgotten to mention something. I had a shower, so I disconnected my insulin pump temporarily, capped the tubing and the cannula that is inserted, currently, on my back. After the shower I primed the tubing and reconnected. So many of these interactions are so automatic I barely even notice them any more. 

10:02 
WDD Update: (It's RELENTLESS isn't it?) 10am and feeling a little bit indigestion-y / dry-throated. This *might* be connected with my raised blood glucose levels, but my symptoms of high BGs are patchy to say the least. It is probably because I have just been thinking about it since breakfast and it's all in my head. Or maybe it isn't? Tempted to check my blood glucose level again, but the thought of another finger prick so soon after the others (and especially because I think it will be another high level) is not encouraging me. 

I am also feeling a bit hungry, but adding the complexity of something carby at this stage will just create even more confusion/uncertainty so I am having a handful of nuts and a cup of tea instead. It's not that I *can't* have a couple of biscuits - it's just that the mental effort, and potentially disastrous BG outcomes kinda drains the joy out of them.

Via comments
Regarding feeling hungry when BG is high: I think it's because you body knows you have fuel on board, but it also knows that the energy is trapped in the blood and not making it into the cells. So it asks for more fuel. Which potentially makes the problem worse. Which makes you hungrier. Rinse. Repeat...

The really REALLY irritating thing for me is that my clearest symptom of low blood glucose is ALSO 'feeling a bit hungry'. So every time I feel a bit hungry I have to work out whether my BG is too high because of what I've just eaten, too low because I've over-compensated or, perhaps, that I might be just 'a bit hungry'. Pah! 

10:40
My Twitter feed is ablaze with #wddchat16 today. A 24-hour curated international Twitter conversation with different countries hosting an hour and handing over to each other. Thousands and thousands of people connecting, sharing experiences and supporting each other. I find great support to help me manage my T1 by connecting with people online, but I am going to have to resist getting involved on Twitter today or I am *never* going to get anything done! 

12:30
Lunchtime beckons. As you can see, the carefully considered correction doses I have administered today have had absolutely no effect, even though all of those doses have now finished working (approx 4 hours). I am beginning to feel the sluggishness of high BGs emerge. Lunch is a 2 slice Burgen bread sandwich and an apple*. 25g carbs for the sarnie and allow 20g carbs for the apple, so 45g total. My lunch ratio is 1 unit of insulin for 11g carbs. Thankfully my pump can do the maths for me, along with calculating a correction based on 1u lowering my BG by 3.5mmol/L and the difference between my current BG and my ideal mid-range target. Confused yet? Dose for lunch is 4u, plus another 1.5u correction for the high BG. I will wait rather longer to eat this time, with the intention of being more in range before adding more carbs. A tricky timing challenge as the longer I leave it the more steeply dipping my BGs will be when I eat, and the food will take a while to get going itself. It can feel like trying to hit a perfectly weighted long-ball pass to a sprinting striker... in the rain... into a headwind. 

* I tend to eat the same things for breakfast and lunch week in, week out. Partly habit, but mostly to reduce the number of variables by sticking to things that have been 'fairly reliable' (Ha!) in the past. That way if results are not as expected I can discount carb-estimation and food-absorption-speed errors, and it becomes more likely that my insulin needs have changed again.

12:46
How long has that been? Ah. OK, my instinctive 30 minute recheck. Will leave it a while and BG check again.

Via comments
It must be exhausting being you: The thing is... I recognise how amazingly lucky I am to *only* have T1D to live with. And to live with it in the UK with access to insulin, tech and the unbelievably amazing NHS. If I'd been given a list of LTCs to pick from aged 21, it would have been a pretty good option.

13:12
Just checked again. #BGnow of 9.3 after a full hour. Not perfect, but it will have to do. If I don't eat now I'm likely to get too absorbed in what I'm doing and forget.

15:42
This is getting a bit annoying now. Walked to Coop without TBR as things have been running high and I'm still too high on return. If things were working I would already be back in range. Correcting with a further 2.5u. Pump recommended 0.7u as I still have 0.7u 'insulin on board' from lunchtime. Initially thought about 1.5u, but have added another unit. Essentially I am now dosing what I think is 'slightly too much' because 'enough' isn't doing anything. I will need to keep an eye on it towards eve meal time. Starting to feel a bit crabby/irritable.

Via comments
Could raised BGs be an issue with the infusion site? Good thought, Not sure though... Would expect a much more dramatic rise with a cannula fail rather than being held steady through subsequent meals. This just feels like walking the wrong way on a travelator. Have been expecting my basals/ratios to shift soon. Looks like this could be it?

Could it be degraded insulin, having got too warm?  No it's quite a fresh one. I will take a look at tomorrow's results and see whether it's a pattern or 'one of those days'

17:43
Yay! My first in-range result of the day. Must remember to change my insulin pump battery before I go out for the evening. Last thing I need is Threepio wailing away when I'm trying to play guitar.

17:56
Just prepping for evening meal. Here's my insulin pump working up the mathematics for the dose. Feel very lucky to have access to tech which can fine tune doses like this. And if I decide I want to up my insulin intake by 10% tomorrow I can adjust the settings and let it work out the new ones. My diabetes may not behave reliably/predictably, but at least I can wrestle it with some precision on one side of the equation!

19:54
Typical, just when you can't watch what is going on and just when you really don't want to dip low. Several handfuls of Skittles to the rescue. Don't want to repeat the brain-fog for the next lot of songs.

Via comments
Regarding hypo warning signs: The ones that sneak up on me at that level really scare me. I tend to get good signals at least between 3.5 and 3, this time I had lack of coordination and slight sweating as clues. Didn't get my more usual anxiety/hunger until on the way back up.

21:42
That's the thing about T1 diabetes. You really can't rely on it to behave consistently. Just when you have been running high all day, and without rage-bolusing for a meal you get an unexpected dip. I suspect a slight mis-estimate of carbs for my evening meal, and not quite enough of an insulin delay for noodles (some carbs take longer to hit my system and an insulin pump allows me to deliver the dose either fully or partially spread over a number of hours). Still surprised the handful of extra fast carbs I ate as a 'safety cushion' disappeared so completely. 

22:02
Another check, and as I half expected I slightly over-did the hypo correction. Always tricky treating a hypo when you have insulin active, and when you don't want to risk a double-dip. I added a 30 minute 0% temporary basal rate just in case. Looks like a few Skittles too many. Another correction delivered. Not my best day of BG control. But not my worst either!

23:36
This is the last of my posts as part of World Diabetes Day. I waited up to allow that last correction to settle in. 

In Sesame Street style, today has been brought to you by 9 blood glucose checks, 110g of carbs, 29.475 units of insulin (40% background, 60% meal/correction). Just an average day with T1D (with above average BG levels). 

Now wake up tomorrow and do it all over again. And the next day. And the next. And the next...

 

Diabetes UK Professional Conference 2016 - Education, Individualisation and steps in the right direction

Between Wednesday and Friday last week I found myself in sunny Glasgow immersed in the insanely intense experience that is the annual Diabetes UK Professional Conference. I had been lucky enough to attend last year as one of Diabetes UK's bloggers and tweeters. This year Diabetes UK wisely ran a competition to throw the net a little wider for patients interested in attending the event and spreading the word. Thankfully they had the good sense to ignore my application and selected five people who did a significantly better job of sharing the content of the conference with the #doc (Diabetes Online Community) than I did last year. Hats off (alphabetically) to Andy, Bob, Charlotte, Ellie and Helen - you did an amazing job. In particular, Andy Broomhead has really put the work in covering many sessions of the conference in a series of excellent blog posts. Ignore this turgid waffle and go and read them instead - they are far better.

Undeterred by not making the cut with DUK, I contacted the lovely folks at Abbott Diabetes to ask whether they would be prepared to sponsor any patient attendance to the conference. I was delighted when they said that this was going to be a possibility, and was subsequently asked if I would be prepared to share some thoughts of my experience as a patient who has used Freestyle Libre off and on for a year or two.

And so it was that I hopped on a plane early Wednesday morning and was able to make the opening sessions of the conference in the architecturally-spectacular SECC in Glasgow. The Diabetes UK Professional Conference really is quite hard to describe. At least this year I was a bit more mentally prepare for its scale. There are upwards of 3,000 people from all over the world who specialise in diabetes, and everywhere you look people are making connections, comparing notes, absorbing new research and knowledge and generally seeking to see, or create, or develop better diabetes care. The programme is so packed full of sessions and opportunities that however much you try to cram in you are left with the feeling that you have missed out on really good stuff. Additionally, having been to a few events over the last year or two I am beginning to find the concourse a more hazardous environment - particularly if timings between sessions are tight. It's all too easy to bump into someone you've met before and grabbing a 'quick five minute' catch-up can leave you scurrying to your next session and having to creep in at the back with the apologetic shrug of a guilty latecomer.

I cannot possibly do justice to all the excellent sessions that I saw over the three days, so instead here are a few edited highlights.

Overall themes that struck me: Education; individualisation of care; leveraging (ugh! sorry) apps and technology; empowering and engaging young people; treating people, not numbers.

New outcome trials in type 1 diabetes
The opening plenary session on the first day included three talks, one of which was Simon Heller presenting results from the REPOSE trial (The Relative Effectiveness of Pumps over MDI and Structured Education for Type-1 diabetes) which is due for publication very soon. Essentially, REPOSE has shown that pumps, on their own, make less difference than might be supposed. Yes they *are* more flexible, yes they *are* more precise and offer additional techniques and possibilities such as extended boluses and temporary basal rates - but as Simon Heller said, "You can't take someone with a high HbA1c and say, 'You need a pump, that will fix it', because it simply isn't true." His argument was that as good as the technology is, people need a lot more help, support and training in managing their own diabetes in order for that technology to work well. People can do very well on pumps, people can do very well on MDI - but it is the help and support they have received in making better decisions that will make the biggest difference. It also makes me wonder whether, for some people, approval for pump therapy forms a sort of catalyst to re-examining their day-to-day management strategies. And what T1 care really needs in the UK is more engaged, better supported and individually encouraged patients who are equipped to wrestle their own particular diabetes monster as best they can.

Everyone's second-favourite rabble-rousing superstar endo Partha Kar summed this up quite nicely in his round-up blog post:.

It isn't about the latest super insulin, it isn't about the flashy technology, it isn't about the "cloud", it isn't about Apps or offering education programmes... it's only about one thing- YOUR ability as a professional to engage and communicate with the patient- move away from the "how's your blood sugars?" to "how are you"... till that day, we will not be able to improve outcomes - however much resource we magic up.

Colin Dayan then spoke about peptide immunotherapy (more on that later) followed by Rob Andrews and Parth Narendran presenting results from the EXTOD trial (exercise in type one diabetes). One result of the trial that really struck me was that when polled the majority of HCPs felt confident to advise around exercise and type 1. However when those same professionals were tested with a detailed questionnaire, they were often not able to give reliable information in response to the questions. EXTOD.org is a resource that aims to offer good information for heathcare professionals and to support patients with type 1 seeking to exercise.

Apps and web-based technology: fad or future for diabetes care?
A topic quite close to my heart this one. I was gutted to miss Nick Oliver sharing about automated dose adjustment (that bloomin' concourse again!) but hugely encouraged to hear from patients and HCPs at both Kings (Geraldine Gallen, Imogen Lee) and Newham (Mark Norman, Shanti Vijayaraghavan) about their experiences of 'virtual clinics' using Skype and other web-based technologies to support people with diabetes wherever and whenever they need it. A more flexible, less attendance-at-clinic-based-approach improved engagement, patient satisfaction and outcomes, particularly with young people. To be honest it sounded very like being connected to the #DOC, but with added 'doctoriness'.

Lastly Andy McQueen and Deborah Wake went on to describe the successful 'My Diabetes, My Way' project in Scotland.

Glucose Monitoring in Diabetes
Another selection of three talks. Andrew Farmer spoke about self-monitoring in type 2 diabetes. Unfortunately his studies always seem to come down on the side of 'no' for the general T2 population, and always talk about 'adherence to diet' rather than transforming your diet by 'eating to your meter'. Interestingly David Owens who chaired the session asked "is there a group of patients outside the guidelines who are willing to use SMBG to change their behaviour?" to which Prof Farmer did concede, "there is no evidence at a population level, but if someone says it really helps - then it is open to try it out". Sadly I was right at the very back of the auditorium, too far away from the microphone and wasn't able to ask about Dr Farmer's reaction to Jane Speight's interesting paper on the STEP study which concludes that structured testing for T2s not on meds can be very beneficial. This certainly seems to be borne out by experiences of people I see on diabetes forums who are able to reduce or eliminate medication using SMBG to define a diet that their body is able to metabolise properly by experimentation rather than guesswork or 'adherence' to what someone else says they should be eating.

The session on deciphering CGM data by Iain Cranston was probably my favourite of the whole conference. I'd like to go into that in rather more detail so I'll cover it in a separate post.

Finally for that session Lalantha Leelarathna spoke about emerging technologies, bolus calculators, Libre, CGM and encouraging results from sensor augmented pump and artificial pancreas trials.

In the exhibition hall
Later in the afternoon I gave the first of my 10 minute talks about the ups and downs of juggling type 1 and how I have been using the Freestyle Libre as an occasional part of my toolkit for the past few years. Slightly unnerving just having to start talking on the Abbott stand with people milling about, but just as they had for the brilliant Peter Hammond, people soon began to stop and listen to my rather less edifying wittering and a small crowd formed.

One other intriguing discovery on day one was a stand for a new blood glucose monitor (the Keya Smart), due to launch in the Summer (the UK being first in the world) which simultaneously measures blood glucose and ketones on the same strip from the same sample. Cynically I have to say I assumed that the strips would be priced perhaps halfway between 'normal' BG strips and the significantly more expensive blood ketone strips. However, the people on the stand suggested approximately £15 a pot - which is fairly average among BG strips. I'm not one who seems to struggle with ketones, and I am quite content with urine strips, but the possibility of ketone monitoring alongside each BG test could be hugely reassuring for anyone who has struggled with DKA. The meter offers a traffic-light style readout through green, amber and red to alert you if ketones are present and worsening - so you can instantly tell if you BG is simply annoyingly high or if you need to be taking more drastic action/considering A&E. It will be interesting to see if the product lives up to the hype when it launches.

Day two

Immune Pathways in Type 1 Diabetes: will they lead to a cure?

Mark Peakman's mind-bending Dorothy Hodgkin Lecture picked up where Colin Dayan had left off. All I can say is that it made a great deal of sense at the time, but really the science is way beyond me. It seems they can already identify people who will go on to develop Type 1 Diabetes at some point with some certainty, even in infancy. The tantalising possibility is to use peptide immunotherapy to alter the errant immune system action and prevent the onset of type 1. The signs are very encouraging, but (almost inevitably) still at a very early stage.

Hypoglycaemia

Chaired by Pratik Choudhary and Jackie Elliott, these 6 short talks covered many aspects of hypoglycaemia, brain function, risk, inpatient experience and models of care. One extraordinary and very unexpected statistic related to the average age of people admitted to hospital with Severe Hypoglycaemia. I would have assumed that the challenge lay primarily with children, or perhaps young people and teens. However the data presented clearly showed that the distribution is shifted towards elderly patients, often those living alone. I can't imagine how frightening this would be. However a new model of care developed in the East of England, including a 'single point of contact' had made significant progress in reducing repeat-caller rates and with increased referral to education has provide significant savings both in terms of money (more than enough to pay for itself), but more importantly the major cost in terms of quality of life.

Individualising targets in diabetes: NICE or not NICE?
Of course I was not able to resist this discussion about the role of NICE guidance in informing diabetes care. Chaired by Nicola Milne and Paul Newman, four speakers offered their opinion on the role of NICE guidance. Laura (ninjabetic1) gave a wonderful patient perspective covering structured education, test strip allowances, targets and inpatient care. Many good things in the guidance, but how many are being done? Whether the new tighter HbA1c guidance to avoid complications might induce feelings of judgement and failure.

Brian Frier from Edinburgh then gave some harrowing accounts of people being treated to inappropriate glycaemic targets. Chasing potential long-term benefits for the avoidance of complications in elderly patients gradually introducing treatment on top of treatment until they ran the risk of falls or injury related to hypoglycaemia. QoF came under a good deal of scrutiny, particularly in the way it discourages individualisation of care.

David Millar-Jones, a GP from south Wales dissected whether the type 2 guidance was fit for purpose. The published version had come a long way from the initial consultation draft he said, but there were still question marks over whether it could be easily used in real-world practice clinics.

Lastly Partha Kar offered his thoughts on whether the Type 1 guidance was realistic, or simply a utopian fantasy. He made it clear that he felt that the guidance itself was excellent, but asked the more difficult question of what the outcome of the publication was likely to be, particularly in the light of less-than-rosy National Diabetes Audit reports for Type 1. Whether the guideline production machine was actually able to achieve much in the cash-strapped reality of the 21st Century NHS.

This was probably one of the most lively sessions I attended with many questions and comments being made at the end of each of the talks. We were fortunate that Stephanie Amiel the hugely respected chair of the Type 1 guideline development group was there to clarify one or two points. And I may have accidentally stood up at the end to offer a few thoughts of my own, and to confess to the lower A1c target which was, after all, mostly my fault.

Summary
There was much to be encouraged about during the conference. A genuine desire to see diabetes outcomes improve, to share and promote better ways of doing things and to make tangible progress towards more people living better with diabetes.

Here are a few quotes that really resonated with me during the three days.

All in all a fantastic time and lovely to be able to meet up with so many faces old and new. Lis, Laura, Sandie, Charlotte, Ellie, Helen, Emma, Sophie, Dani, Hannah, Jackie, Becky, Stephanie, Andy, Bob, Peter H, Partha, Pratik, Pete D, Kris, Jonathan, Neil, Sacha, Sheldon and many more I know I have forgotten. Here are a few of us gathered in the bar of the Crowne Plaza on Thursday evening.

Disclaimer. Abbott Diabetes kindly paid for my travel, accommodation and entry to the conference. They also paid a modest honorarium to cover the time taken to prepare and deliver my short talks. I was not asked to say anything in particular and if I thought the Libre was terrible I would have said so. I have not been paid to write this post or any Tweets relating to the conference. The chance, as they say, would be a fine thing.