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.

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.

Aaand relax! Thoughts on the REPOSE trial

I've been watching Twitter with some interest today, following a conversation about a recent piece of research published by top-notch diabetes Doc, Sheffield's Dr Simon Heller.

I first heard of the REPOSE study (Relative Effectiveness of Pumps Over MDI and Structured Education) in 2016 when I was able to sneak into the Diabetes UK Professional Conference, where Dr Heller published some of the early findings. It has now been formally reviewed and published in full and, as much as I am able to understand it, I find it fascinating reading.

If you are interested, you can read the study here: http://www.bmj.com/content/356/bmj.j1285

The intention of the study was to evaluate whether insulin pumps or multiple daily injections (MDI) gave the better outcomes for people living with type 1 diabetes who have received comparable training and support. Essentially they took over 300 people, spread across multiple centres almost all of whom had HbA1c results over 7.5% and offered them structured education/training in intensive insulin therapy. Of those that undertook the training (267) the study then followed 260 people over 2 years to see what changed. Of the study group, the pump vs MDI split was approx 50:50.

What did it show?
Here are some of the results that caught my eye...

• Supporting people with effective, detailed structured-education/learning/training* in the complexities of managing type 1 diabetes improves outcomes whatever method people use to deliver their insulin (* delete the phrase/s which annoy you the most)
• On average people do a little better on insulin pumps (-0.85% with pump treatment and -0.42% for MDI)
• When results are adjusted for differences which could have skewed the data, the pump 'win' was pretty modest at around an extra -0.25% (-2.7 mmol/mol) reduction in A1c for pump users vs the MDI group - the averages may, of course, hide significant individual variation
• Pump users additionally scored better for 'quality of life' and 'treatment satisfaction'

What I find interesting, reading between the lines, is that this study almost exactly replicates my own meandering journey towards insulin pump therapy. This whole blogging endeavour sprang out of a non-Wittertainment related 'unfortunate event' which acted as a catalyst for me to re-assess my own relationship with type 1. Chiefly that reassessment was that I was nothing like as good at dealing with it as I was allowing myself to think. I then went through a period of significant re-education, not by attending a formal course, but by my own experiments and learning from others living with T1D, many of whom were using updated intensive-insulin-therapy-type approaches. After much work, and many successes (including a reduction in A1c and elimination of severe hypoglycaemia) I realised that I had reached the limit of my MDI skills, and if I wanted to improve further - which in my case meant more or less maintaining HbA1c, but further reducing mild hypoglycaemia and glucose variability, then the next step for me was an insulin pump.

The small irony is that I had been offered an insulin pump repeatedly for going on 5 years at that time, but had never liked the idea. In fact, looking back, I think if I'd accepted a pump in the years before we started writing this blog, and before I had discovered the #doc - I am really not sure whether it would have done anything much for me. Or whether I would have just have tried it for a bit and then stopped using it out of frustration.

No magic bullet
One of my take-aways from the REPOSE trial is that insulin pumps (or any other diabetes technology for that matter) are never going to entirely 'fix' things. This was certainly one of the things that put me off pump therapy for years. If many of my errant results were down to 'user-errors' of judgement, I reasoned, what difference could it make whether that 2u, 3u, 4u dose was delivered by syringe, insulin pen or pump/cannula. It's pretty obvious really - or at least it should be - but a lot of the potential power and effectiveness of insulin pump therapy comes down to the way an individual thinks about their diabetes management. The techniques they use, the strategies they have been given to review and adjust on an ongoing basis. I attended a pump users event when I had only been using Artoo for a few months and was slightly shocked to meet people who had been using insulin pumps for years but had never used (or wanted to use) the combo/dual/square/extended bolus options. It may be that they didn't need to, or that they had never been shown how to. But the lack of curiosity was a genuine surprise.

Not for everyone, and not second best
It is all too easy inside the hothouse of the 'Twitter bubble' to let yourself believe that absolutely everyone is using an insulin pump, full time CGM, Nightscout, and open-source cloud-based Artificial Pancreas algorithm. If you understand even half of that sentence, you will know exactly what I mean. But the simple truth of REPOSE is that insulin pumps are just one option, and they will suit a particular type of person, with a particular set of approaches at a particular time in their lives. That doesn't inherently make them better or worse, and it certainly doesn't make them right for everyone all the time. I loved this post by everyone's second favourite ex-teacher-Libre-wearing-cat-loving-warm-ball-of-GBDOC-loveliness Adrian Long about his continued love of multiple daily injections. People can do brilliantly on MDI, and people can do brilliantly on insulin pumps. What matters most is the support and information/training they have been given. Diabetes is going to be infuriating, uncooperative and apparently willfully disobedient whichever insulin delivery method people use. What I need, in order to face those daily frustrations is a comprehensive set of strategies, and individually tailored personalised goals to make small incremental improvements towards better outcomes. In addition a good deal of understanding and moral/psychological support goes a long way to help.

The shiny gadget effect, sticks and carrots
I do find myself wondering about the possible catalytical nature of a new piece of diabetes technology. For some people, and I think I might be one, having a shiny new diabetes toy (or the promise of one) can re-energise them into a new, more active relationship with their diabetes management. It may also be that people who have never really fancied attending Structured Education, for a whole host of reasons, may decide to take the plunge in order to get access to the technology they are hoping will help.

I'm not altogether sure how I feel about this if I am honest.

I would hope that REPOSE leads to more individualised, supportive care, rather than people being forced to unnecessarily attend officially endorsed education courses purely to box-tick the process (and add delay into the bargain). My own journey towards pump therapy was excellent in that regard. In the pre-pump assessment I was offered the education, but in conversation it was decided that I was already using exactly the techniques and strategies that the course advocated, so that it was entirely up to me whether I thought it would be beneficial or not. I would not want people who might excel at pump therapy to be put off by a hardline education requirement... but at the same time, my own experience tells me that often you don't know what you don't know. And that many people who attend diabetes education expecting very little from it actually leave the course with their relationship with their own diabetes utterly transformed.

Worries
My slight worry in all this, is not what this study actually shows, but more how it might potentially be interpreted and skim-read - short version: pumps expensive and not much better. The current guidance over the use of insulin pumps (and when people may additionally benefit from CGM) is pretty clear cut. And yet, some people in some places find themselves having to jump through interminable hoops, or simply get enquiries brushed off for having 'too good an HbA1c'.

Insulin pump therapy really does work well for some people, but it is expensive and the 'working well' does not come automatically. What I hope comes out of all this is a greater level of support and assistance both for pump users and MDI whizzes to aim for those elusive  and aspirational treatment targets alongside a decent quality of life and an avoidance of diabetes burnout. With finite NHS resources it is only right that these therapies are used effectively, and clearly a vital component of that is the support, education and encouragement that people receive, not just initially, but on an on-going basis.

Simply blindly chucking technology at T1 is never going to work.

I'd be interested in your thoughts on this trial, and how you think it might impact you in your journey with diabetes. Please do leave a comment below.

Cholesterol confusion and climate change

Photo by Malcolm Koo (Creative Commons)

There are two types of people in the world - those who repeatedly suggest there are two types of people in the world and those who don't.

When it comes to cholesterol and heart disease however, there seem to be three types of people in the world: Firstly those who think fat is bad, cholesterol causes heart disease and statins should basically be put in the water supply; Secondly those who suggest cholesterol is a natural healthy substance, saturated fat is fine and doesn't affect serum cholesterol anyway and that statins are at best ineffective and at worst part of an evil plot by Big Pharma to make vast sums of money and hang the consequences to anyone who takes them. Thirdly there is the group that watches the two extremes bicker and squabble. That reads report after report each debunking the other's 'evidence' shrugs our shoulders and wonders what on earth to make of it all.

You may be able to tell that I am firmly in the third group.

I have tried to write this post many times before. Almost always after the release of some study or other which shines light on it (from either direction) in a pretty conclusive way. But each time this happens, almost without fail, within a day or two I will see something else that eloquently argues exactly the opposite point of view - and I find myself back at square one. So I have given up waiting until I have made up my mind one way or another and decided to just pour it all out. To try to explain my confusion - probably mostly to myself. It will be rambling, contradictory, borderline-incoherent, and in reality I should probably re-read it and get rid of at least two thirds of it. But I'm not going to spare you that, dear reader. You will just have to suffer along with me.

At the outset it is crucial to remind you that I have absolutely NO medical expertise whatsoever. This is not advice (perish the thought!). I don't understand most of this stuff enough to apply it to my own situation, let alone anyone else's. I know people that take Statins and get on well with them. I know people that have had terrible experiences with Statins and would not touch them with a bargepole.

The last time I nearly wrote this post was April this year when I read this report of the HOPE trial. I found this particularly interesting, because it talks specifically about 'primary prevention'. That's medical shorthand for giving people some medicine to prevent a thing happening that they might be at increased risk of.

“Statins work beautifully, resulting in a high significant relative risk reduction of 25%,” said Yusuf. Further, statins were “relatively safe,” though there was a small excess in muscle pain, but not rhabdomyolysis, in the statin-treated group.

Wow! 25% less chance of heart attack or stroke. Sounds pretty worthwhile. And HOPE-3 focussed on a population at 'intermediate risk'. So these are benefits that were shown to exist even where increased risk was only fairly modest. This caught my eye because you don't have to live with type 1 diabetes for long before people start telling you that you are going to die of a heart attack. That's what does for most of us, apparently. However perky your blood glucose management is generally, living with T1 you will almost certainly be having significant glucose excursions that 'nonnys' would never have. Of course you can significantly reduce your theoretical risk by keeping a lid on your blood glucose levels and HbA1c - but therein lies the snag for people trying to view any of this research and apply it to their own situation. Risk calculators don't work if you have T1. And primary prevention studies that take a cohort of people with a UK-average HbA1c of 9% or so, might have a different risk to you as an individual depending on your own fortunes wrestling the Diabetes Gremlins. Benefit shown to those at 'intermediate risk' was certainly interesting though. I've not had a heart attack, I'd like to keep it that way and I'm getting older year by year.

I had promised my clinic that I would continue to keep an open mind about the cholesterol issue, and perhaps this was it - the primary prevention study I had needed to convince me that it was worth trying a Statin and seeing how I got on with it, in the hope that my undoubted increased risk of heart-based shenanigans might be reduced by 25%.

The elephant in the room, of course, is the term 'relative risk'. Studies, particularly Statin studies, are quite keen on using that frame of reference as it usually gives a nice Big Attention Grabbing Number. So if your risk of something happening was 0.1% and it dropped to 0.08% it might sound pretty meagre. But you could express the same change as a 20% reduction in relative risk, which sounds much more weighty. Hmmmmmmm.

Hot on it's heels, if not chronologically but more in terms of the way I stumbled across things was this rather sensationalised tabloid reference to a study by Professor Harumi Okuyama, of Nagoya City University, Japan. This time, taking Statins can actually apparently *make things worse*. Harden your arteries and increase your risk of heart attack.

This was followed swiftly by this piece by Cardiologist and confirmed Statin sceptic Dr Aseem Malhotra which raises some well-worn questions over the entire evidence-base behind cholesterol-lowering drugs and the refusal of the companies to release the raw data on side-effects.

"biased reporting in medical journals, commercial conflicts of interest and medical curricula that fail to teach doctors how to understand and communicate health statistics was contributing to an epidemic of misinformed doctors and misinformed patients."

reputed French Cardiologist Dr Michel De Lorgeril's own analysis reveals that all studies published after 2006 reveal “no benefit” of statins for cardiovascular prevention in all groups of patients.

I'm not even going to open the can of worms that links Statins prescribed to people without heart disease and a doubling of their risk of developing Type 2 Diabetes. Frankly I have enough on my plate with the diabetes I already have.

And again here, from just this week. Another article that confidently suggests nails in the coffin of the cholesterol hypothesis.

Dr John Abramson, a health policy expert from Harvard Medical School, looked at the HOPE-3 trial and told me the effects were meagre indeed: “91 people have to be treated with a statin for 5.6 years in order to prevent 1 non-fatal heart attack or stroke.” Another way to say this is 90 of the 91 people who take statins for that long won’t see a benefit (and some will experience adverse side effects).

The observant among you will be smiling that exactly the same HOPE trial mentioned above with glowing 25% reductions in risk and very low side effects is now being interpreted as having almost no effect whatever *except* the possibility of side-effects. Though of course, for the 1 person out of 91, the 'not having had a heart attack' would probably be seen as quite a benefit. I wonder how you get to know that you are that 1 person and not one of the other 90. How exactly you notice that something is not happening to you because of a tablet rather than it just not happening to all the others.

And yet... and yet... Most doctors and scientists in the world seem to remain convinced of the link between heart health and lower cholesterol.

My basic problem
Over the last 4 or 5 years I have read a number of posts and articles from people who raise questions over the whole lipid/fat/cholesterol/heart hypothesis. I know that for some of you this will ring alarming tin-foil-hat klaxons, but articles like this (higher cholesterol associated with lower mortality overall *including* heart disease) and this (what causes heart disease anyway) are an entertaining read - and I cannot help it - but they do seem make a lot of sense to me.

I know that for some (many? most?) healthcare professionals some of these characters are a sort of... well, if not exactly laughing stock - certainly not voices to be taken seriously. People who insist that everyone else has it wrong and only they know the truth. Eyes roll. "OK then, if you say so. Never mind dear."

Perhaps it is precisely because I am not medically educated, that I have not learned and trusted the basics of the 'status-quo'. I have less invested in one way of thinking about cholesterol and heart health - and so it is easier for me to read these other arguments and think, 'Well that's interesting.'

Of course, proponents of the mainstream viewpoint will point to decades of scientific research and understanding that have brought us to where we are. For them the lipid-heart hypothesis is an unshakeable fact. And this or that or the other study* has shown that lowering cholesterol really does work. Most of their peers think the same. So take your tablets and feel safer.

*('Funded and published by the people that make the tablets!!' cry the sceptics)

And around and around I go...

• Lots of studies over many years show (apparently) convincing benefit of Statins for heart disease with very low risk of side effects
• Sceptics say the 'adverse event' data are under-reported and the pharma companies refuse to release the raw information for independent analysis
• When it comes to secondary prevention (people who have already had a heart attack) the evidence is much clearer. Most people seem to agree that they work and work well
• Even among cholesterol sceptics or neutrals there is a thought that it might be some activity of Statins other than cholesterol reduction (such as reduction of inflammation or stabilisation of plaques) that confer benefit
• Statins are the most profitable drug in the history of the world - vested interest doesn't even begin to cover it
• And yet I do not subscribe to the view that All Big Pharma Is Evil either - of course pharmaceuticals is a business and the companies have a requirement to make money for their stockholders - but I do think that it is in their interest to create 'products' actually help people, those will be much easier to shift after all

Climate change
The other day, all this made me think about climate change. A decade ago there was a funny little film by Davis Guggenheim and Al Gore called 'The Inconvenient Truth'. We don't even think about it much any more really. As I am sure many of you will remember, the eponymous 'truth' was that the actions of the human race had built up over time and were affecting the climate of the entire planet. Greenhouse gasses, climate change and all that. What struck me was the way that the voices that first raised these ideas from as early as 1896 were initially dismissed perhaps even ridiculed for their line of thinking. Not only that, but now that global warming has been firmly adopted into the scientific mainstream there are still contrary voices. Voices who will insist that for all the evidence that it is unmistakeably happening all around us that climate change is Nothing To Do With Us. That the whole thing is a hoax. A scam. Deniers who will wrap their arguments in convincing-seeming scientific language of planetary cycles, solar variation and internal radiative forcing. There's a conspiracy theory for everything it seems.

And I wonder where we are with cholesterol and heart health? Who is on which side? Will the ones who are being ridiculed ultimately turn out to have got it right? Or at least, made steps in the right direction? Will the mainstream position change in the light of more and better and more independent evidence? Or has the mainstream got it right already and are the cholesterol-deniers just confusing everyone.

I really wish I knew the answer. Because however many times I try to unpick this I always end up here. Shrugging and thinking... well I don't know! Which doesn't really do enough to convince me to take a tablet every day for the rest of my life.

Your Diabetes May Vary (again!) - BG variation after food

Two different carbohydrates, yesterday. (CC)

Which would hit your bloodstream faster, a banana or a biscuit? Pure glucose or a slice of white bread?

Well, in news that will come as a bit of a shock to some (and not at all to others), you can't actually know without checking for yourself.

Anyone with diabetes who has spent much time monitoring blood glucose levels before and after meals (especially if they have then compared their results with anyone else), may well already be familiar with this conversation: Person A: "I find porridge is great in the morning, it releases really steadily until lunchtime"
Person B: "Really?!? I can't go near porridge - it hits me like a train. All breakfast cereal does. Which is odd really, because Mars bars cause me no BG problems at all" etc etc. Rinse. Repeat.

Well a recent study published in 'Cell' by the Weizmann Institute of Science has demonstrated once and for all what we pancreatically-challenged types have suspected for a long time. That blood glucose responses to different foods are infuriatingly and often bewilderingly individual.

The study took 800 people without diabetes, around 54% of them were overweight and 22% classified as obese (with a BMI of over 30 kg/m²). They were connected to a Continuous Glucose Monitor for a week at a time, but the CGM was 'blinded' so participants had no way of seeing what was happening to their levels. CGM consists of a small sensor placed under the skin which records interstitial glucose values every 5 minutes, 24 hours a day. These values generally lag behind true blood glucose values by 10 minutes or so, but give a complete picture of what is happening before and after food and during sleep. People in the study recorded their food intake, levels of activity and so on using a smartphone app. They followed their normal routine, and ate as they normally would with the exception of breakfast, where they were assigned one of 4 standardised meals containing 50g of carbohydrate.

If you have spent much time online, sharing experiences with people with diabetes you may get a nice warm fuzzy feeling of "Aha! I *knew* it!" at the results. Here are a few things that came out of the research that caught my eye:

Responses to different foods were highly individual. Many people's BG rose rapidly after a standardised glucose meal as you would expect, but others were relatively untroubled by pure glucose, while eating bread sent their BG levels through the roof.

A graph comparing two participants shows an almost exact inverse response between, for example, cookies and bananas. In the light of this, any lists of 'foods which release slowly' can only ever be viewed as a general guide. Your own response to any food could well be very different.

In general, people who had higher BG responses after eating carried more weight than those with lower responses. The paper doesn't offer any thoughts as to whether these higher BGs make people put on weight, or whether the excess weight causes the elevated post-meal BGs, but in either case this association did not just occur at the extreme ends, but as a continuous range across the various weights.

The highest post-meal responses 'significantly correlated' with elevated (but still non-diabetic) HbA1c, waking glucose level, BMI and also age - all known to be risk factors for developing Type 2 diabetes. It looks to me like these are people whose metabolisms are already beginning to struggle.

Perhaps unsurprisingly, post-meal responses were shown to be very different to the same foods if eaten after resting/sleeping vs after exercising. Apparently the Pope is also Catholic.

A 100 people took part in a further study which allowed the researchers to develop an algorithm that successfully predicted post-meal BG responses from a variety of clinical, physical and 'microbiome' (eg gut bacteria) factors. Personalised diets were then able to reduce post-meal BGs effectively. In the Diabetes Online Community we simply call this ‘eat to your meter’.

The scientists wonder if working directly on reducing post-meal BGs would, over time, reduce some of the other associated risk factors including reducing weight, HbA1c and lowering risk of fatty liver disease.

What do I think this means for me?
Well first of all, it helps me realise that it's not just me being 'weird' after all. Different people really do react differently to different foods. Sometimes in completely inexplicable ways. I spent almost 20 years eating things that had been recommended as 'slow release' before beginning to systematically test my own responses to foods and discovering a few surprises and several absolute shockers that I had always believed were 'pretty safe'.

In general, it is easy to see that the proportion of carbohydrate in a meal could have a fairly direct impact on post-meal BGs, but this research goes some way to explain many of those 'Huh??!?' moments, and demonstrates that there's a lot more to it than that for each individual.

People make a lot of noise over 'low carb' vs 'high carb', but in truth, those definitions are of little interest to me. What I'm after is a varied, enjoyable, sustainable, LOW BG SPIKE diet that suits *me*. This research encourages me to continue looking for it.

"Your Diabetes May Vary", and all that.

Freestyle Libre - Going for the hat-trick?

Abbott have been able to announce a couple of really exciting bits of news in the last few weeks. Just in case you hadn't heard here they are...

Libre approved for use in children
The lovely Lesley Joseph from INPUT was attending ATTD 2016 (Advanced Technologies & Treatments for Diabetes) in Milan last week and was excited to share a glimpse of one of the presentations where Abbott announced that they had achieved a license for Libre in children. This was enthusiastically shared on social media along with another of the slides from the conference with some of the details from the study.

This is really good news for parents of children with diabetes who have been wanting to try the Libre as part of their diabetes management toolkit. It also reassures those who jumped in early before approval and used the Libre 'off license' for their children that they can now contact Abbott with a happy heart if they have any problems or need any advice.

Not to be outdone, Abbott themselves made an official announcement soon afterwards. Unsurprisingly choosing overnight testing as a particularly useful time to have a Libre in use. A lot less hassle to wave a reader through the duvet than to have to get a lancet out at 3am and rouse your slumbering child.

This welcome news came pretty hot on the heels of another long-awaited update in the story of the Libre...

No more waiting list
Following the launch of their new high volume production facility in January, Abbott have been able to clear the UK waiting list and the Libre can now be bought by anyone without having to wait. I heard about this a good few weeks back, but was a little cautious to mention it until I could actually see the results (we have been here before remember). However a week or so ago the news on TwitFace and other Social Bloggings was that, yes, the waiting list is no more. Hurrah!

At the same time, I had also heard from Abbott that they were beginning to roll out an official smartphone app that allows people who have a phone with an NFC chip to dispense with the reader and just use their phone to take Libre readings. I can't say much more than that as it has currently only launched in Sweden, but being able to ditch the separate meter certainly appeals to me. There are a couple of 'home spun' Android apps that attempt to do the same, but an official one from Abbott would reassure users that it has had to be put through all of the regulatory rigours of the handset itself. I will watch this one with interest (though I suspect as it stands no iPhone version will be possible because of the way Apple limits access to the iPhone 6's NFC chip).

I have not heard any more information about plans to launch either the Libre itself, or the app in more countries (though I know the UK is next on the list for app launch), but I have been promised a bit of a catch-up with Abbott in the near future and will keep you posted if I hear anything else.

The next big thing?
What would make this perfect for UK readers, of course, would be the announcement that the Libre was to become available on prescription via the NHS. Rumours and grapevine whisperings suggest that this might be tantalisingly close, but as yet remains elusive.

It seems there was much talk at ATTD about CGM (and other continuous monitoring options) and sensor-augmented pump therapy (Smartguard and other Artificial Pancreas dual or triple hormone technologies) so we will all be watching with interest.

If you hear any juicy gossip or rumours, do share them in the comments below.

New NICE Guidelines for Type 1 Diabetes Published (at last!)

As some of you may know, over the last three years (THREE YEARS??!?) I have been working with a wonderful group of fiercely clever and passionate people as one of two 'patient representatives' on the NICE 'Guideline Development Group' which was revising and updating the NICE Guidelines for type 1 diabetes in adults. Expert consultants, eminent physicians, nurses, pharmacists, GPs, educators, editors, along with a host of other specialists including researchers and health economists who gathered and organised an almost unimaginable quantity of research data for the group to filter through and consider.

It has been a huge privilege to work with them all, not least Professor Amiel, the chair of the group, who is a complete inspiration and quite the nicest person you could meet. We have not been permitted to mention anything much connected with the discussions until publication, but at last, today, the guideline launches here: ‘Type 1 diabetes in adults: diagnosis and management'.

Hooray!

If you have been living in a cave for the last 16 years and have never heard of the National Institute for Health and Care Excellence (NICE), they are an independent body working as part of the Department of Health who publish guidance on all manner of healthcare topics which aims to set the 'gold standard' of evidence-based care, balancing clinical outcomes, patient preference and quality of life against the cold hard reality of NHS budgets (ie Yes! You can have something expensive... but only if published research shows it's reeeeeally good for most people).

As a patient, I *love* the fact that I can have a weighty, official, authoritative document that describes what has been shown to be the very best in diabetes care. It gives me something to consult to measure my own experience in clinic, and the right kind of pointy questions to ask if I think I should be getting something that isn't being offered. Plus if I think something should be available that isn't, the documentation is so comprehensive that (if I wanted to) I can dig down into the 'linking evidence to recommendations' section to unpick the reseach and discussions that underpinned the recommendations.

NICE seems to get a hard time in the press off and on (either for denying treatment, or for recommending it) and is frequently accused of bias or an almost corrupt collusion with the pharmaceutical industry. I have to say this could not be further from my experience of the guideline development process. Each meeting included a new declaration of 'conflict of interest' and anyone with a conflict, financial or otherwise, however minor, was not permitted to contribute to the discussion or was asked to leave the meeting entirely.

I am very proud to have been part of the process, and believe that this updated guideline, if fully implemented has has enormous potential to improve the lives of adults living with type 1 diabetes in the UK.

Here are a few things I'm really pleased made it into the final version:

Structured education

Offer all adults with type 1 diabetes a structured education programme of proven benefit, for example the DAFNE (dose-adjustment for normal eating) programme. Offer this programme 6–12 months after diagnosis.

If a structured education programme has not been undertaken by an adult with type 1 diabetes by 12 months after diagnosis, offer it at any time that is clinically appropriate and suitable for the person, regardless of duration of type 1 diabetes.

My feelings about the lack of structured education formed no small part of my journey toward joining this NICE committee. Carb counting, dose adjustment, correction factors, basal testing, guidance about exercise, alcohol and sick day rules. How can people be expected to make a decent go at managing their type 1 diabetes without these skills? And yet the number of people who have ever attended such a course is pitifully small. Unless I'm mis-remembering it's something like 6.5%. Let's hope that during the life of this guideline that changes significantly.

Access to test strips

Support adults with type 1 diabetes to test at least 4 times a day, and up to 10 times a day if any of the following apply:

• the desired target for blood glucose control, measured by HbA1c level (see recommendation 1.6.6), is not achieved
• the frequency of hypoglycaemic episodes increases
• there is a legal requirement to do so (such as before driving, in line with the Driver and Vehicle Licensing Agency [DVLA] At a glance guide to the current medical standards of fitness to drive)
• during periods of illness
• before, during and after sport
• when planning pregnancy, during pregnancy and while breastfeeding (see the NICE guideline on diabetes in pregnancy)
• if there is a need to know blood glucose levels more than 4 times a day for other reasons (for example, impaired awareness of hypoglycaemia, high-risk activities).

'Proper' testing frequencies of up to 10x a day (and making use of the results) shown to be more effective AND cost-effective. No more shocked looks permitted from non-specialist Drs or nurses suggesting a couple of times a week should be fine.

HbA1c Target

Support adults with type 1 diabetes to aim for a target HbA1c level of 48 mmol/mol (6.5%) or lower, to minimise the risk of long-term vascular complications.

Agree an individualised HbA1c target with each adult with type 1 diabetes, taking into account factors such as the person’s daily activities, aspirations, likelihood of complications, comorbidities, occupation and history of hypoglycaemia.

I've written about this before. Personally, as a patient, I am really pleased with the balance between these recommendations. Don't tell me to be happy with an A1c approaching 8% if there is real evidence that lower is better to guard against long-term complications. Don't tell people who have no problematic hypoglycaemia that their A1c is 'too low' because it's in the 6s (can't get used to the new numbers yet, sorry!). On the flip side, treat me as an individual, don't label me as a failure because you have a magic number in your head that I am working toward, but I'm not there yet.

Not exactly 'CGM for all', but...

Consider real-time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:

• More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.
• Complete loss of awareness of hypoglycaemia.
• Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.
• Extreme fear of hypoglycaemia.
• Hyperglycaemia (HbA1c level of 75 mmol/litre [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real-time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more.

'Consider' is NICEspeak for a much weaker recommendation. It should be on the table, but it's not for everyone. The evidence for effectiveness of CGM was just not compelling enough to do anything else at it's current eye-watering pricetag. To be honest I was shocked at how weak it was, given the experience of people I know who self-fund CGM. Continuous Glucose Monitoring it seems just doesn't do well enough in Randomised Controlled Trials. But at least, here, it *might* be available on the NHS to the people who really need it.

And finally
It was great to see bi-modal (mixed) insulins being given the heave-ho, unless people really wanted to use them. From now on people should be able to start off on a proper flexible MDI regimen from the outset, along with some good education and support.

It was also really heartening to see how NICE reacted to the subject of language. The editors were updating the old recommendations for clarity and new styling (for example 'adult with type 1 diabetes' rather than 'diabetic' or 'patient'). I raised the question of the word control which is a difficult term for some people. Personally I cannot 'control' my diabetes - I do not have the ability to affect all the variables. At best I can limit some, and try to react to, or work around the others. I don't control my diabetes, I manage it. Because of the timing of the discussion, it was not possible given the time-restrictions to change the terminology used in the full guideline (though discussions will be had within NICE for future versions). I was very pleased though that for the 'Information for the Public' version, the phrase 'diabetes control' has been replaced.

What do you think? Will the new NICE guideline make any difference to you? Were you even aware that there was one to cover type 1 diabetes? Let me know in the comments below.

Thoughts from the Diabetes UK Professional Conference 2015

I'm a bit late posting this, but I just wanted to jot down a few thoughts following last week's Diabetes UK Professional Conference 2015 (#dpc15). I was, as the saying goes, dead chuffed to be invited to be one of the bloggers/tweeters co-opted onto Diabetes UK's Press Team for the three day conference in London's sunny docklands where the great and the good of the world's diabetes healthcare professionals, researchers and pharma companies gather for a good old chinwag about all things pancreatically challenged.

DPC is one of the biggest events in the global diabetes calendar and patients are not normally allowed to attend for complex reasons involving a Pharmaceutical Industry code of practice (and possibly also so that they can speak fluent doctor-technobabble unhindered and don't have to watch what they are saying about how bloomin' annoying patients are and how the whole business would be much easier without us). However as honourary members of the Press Team we were encouraged to tweet, blog and generally feed information from the conference to the world at large, including you lot.

It was the first time I have been at an event anything like this and it was absolutely huge. Whatever presentation you were attending you got the distinct impression that there were at least six other things running simultaneously that you'd like to be having a look at. Attendance this year was apparently bigger than ever, though #DOC peeps who had been to previous conferences commented that Excel's cavernous spaces made it seem a bit more spread out.

At least as valuable as the presentations themselves seem to be the incidental networking and bumping-into opportunities. Everywhere you went people near you were meeting up, rekindling connections and sharing information. People who have attended more than a few of these conferences must have quite a hard time getting to any sessions at all, because there are so many people to chat with as you move from one place to another.

On a personal level it was great to be able to meet again, or for the first time with so many amazing members of the DOC incuding, Grumps, Annie A, Laura, Sandy, Charlotte, Hannah, John, Annie C, Kath, Roz, Lis, Partha, Pratik, Pete, Neil and others whom I have doubtless forgotten (sorry!). It was also a great privilege to meet with Barbara Young, Chief Executive of Diabetes UK who took time out of her hectic schedule to meet with the bloggers/tweeters and stayed chatting longer than she had intended. She was quite an inspiration, and seemed genuinely interested in listening to feedback and input from the diabetes coal face - about what matters to people with diabetes and their families. Someone commented that Diabetes UK often get a hard time about occasional gaffes, but rarely seem to blow their own trumpet when they do make a positive impact (like here, where they have got the Government to change ther mind about prescription fines). It was only a brief conversation, but it was quite uplifting and I got the feeling that DUK was in very safe hands. It was great too to be able to meet up with representatives of various pharma and device companies that I have bumped into over the last few years to get a feel for any exciting new toys that might be in the pipeline.

Between us, the bloggers/tweeters tried to divide up and 'live tweet' from as many sessions as possible. This proved to be quite a challenge as the talks are short and intensely packed with information, new research data and other interesting snippets. By the time you have tried to compose a phrase which is as close to a quote as you can remember, with or without a photo of the projected slide and then edited for 140 characters, the speaker has chased on at a rate of knots and you are playing catch up.

Here are a few thoughts from some of the sessions I covered, based on the hasty notes I took:

Could intermittent fasting have a role in diabetes management? Michelle Harvie, Manchester
Short answer, yes. For people with type 2 diabetes various intermittent fasting apporaches (eg 5:2) seem to be easier to stick to and more effective for weight loss than continual energy restricted approaches. Fasting days in the research data tended to be approx 650cals and low carb, but results were equally good if low carb but not calorie restricted. For those in whom the approach worked there tended to be an effect on the non-fasting days too. Even though people *could* eat more freely, they did not necessarily do so.

Fermentable carbohydrates: Their role in diabetes management Nicola Guess, London
Not something I'd really heard of, but fermentable carbohydrate (think dietary fibre... pulses... resistant starch... oats...) seem to have promising effect in the context of type 2 diabetes. Results were a little mixed across different studies, not least perhaps because it can be quite hard to evaluate how much FC is in different foods. It may act as a sort of appetite suppressant. When 21g was given as a dietary supplement it resulted in reduced energy intake for the diet of people with Type 2 even if they were not asked to eat less. Fermentable carb was shown to have a positive effect on the phase 1 insulin response of people with type2 and even non diagnosed family members. Insulin sensitivity has been shown to improve in the presence of fermentable carb too. Unfortunately too much fermentable carb can have unfortunate gastric side effects - the gas released from the fermentation of pulses in the gut being an obvious example.

Advancing inpatient diabetes care 5 presentations chaired by Gerry Rayman, Ipswich
This was an extremely data-rich overview from some new JBDS data, including effective new protocols for management of people on corticosteroids and variable rate insulin infusion (sliding scale) in inpatient settings. Also presented a was a huge new piece of research by Norfolk and Norwich Hospitals into nationwide outcomes/detail of DKA management. Some of which was pretty scary stuff - the risk to inpatients with diabetes of experiencing Severe Hypoglycaemia for people with diabetes is 1 in 50 and risk of developing DKA while in hospital is 1 in 200. As alarming as this presentation might have been there was certainly a sense of concerted effort to tackle the challenges of inpatient management of diabetes and establish effective protocols that improve outcomes.

3DFD Integrating Diabetes Care into an individual's world Mary McKinnon Lecture by Carol Gayle and Khalida Ismail, London
I was really taken by this presentation. It outlined a 'three dimensional' model for improving diabetes care by fully integrating clinical, psychological and social approaches. Both type 1 and type 2 diabetes are associated with every major type of psychological disorder, and people with any of these mental health challenges find self-management of this complex and fickle condition additionally challenging. In addition, people living with severe social deprivation are significantly less able to self-manage. Put simply, diabetes is way down on their list of priorities. Address other areas in patients' lives (housing/debt/mental health) and they are released into better self care.

The 3DFD is a short-term intervention with a lasting impact and has moved from an interesting research idea to become a commissioned service in several UK locations. Initially seen as a 'luxury service' it is not only cost-effective, but actually pays for itself several times over in terms of savings made in other areas.

Lessons from the study of hypoglycaemia RD Lawrence Lecture, Rory McCrimmon, Dundee
Some really interesting stuff here about what happens when the body is subjected to repeated mild hypoglycaemia. The exact brain and body chemistry that is at work in the loss of hypo warning signs, and also the loss of counter-regulatory hormone response (epinephrine/glucagon/liver dump). Initially the brain fires all it's warning bells when blood glucose levels drop too low, but soon enough it learns to adapt. Attempting to 'perform better' at those lower levels and not expending the energy of those warning signs. Ultimately though, the brain can no longer function at the lower and lower glucose concentrations that can be reached without warning. Avoidance of hypoglycaemia can reverse this and 'reset the switch', but many struggle with undetected nocturnal hypoglycaemia which sets back their efforts.

Integration of psychologists into paediatric services 3 presentations chaired by Mark Davies
It was really good to see psychological support given so much coverage at the conference. Particularly in relation to children and young people where effective and timely psychological interventions can have such a dramatic effect.

Workshop: Psychological techniques for addressing hypoglycaemia unawareness Nicole de Zoysa and Victoria Francis, London
Great stuff here from the folks behind DAFNE HART, a successful pilot which demonstrates the importance of psychological support in changing people's behavior and understanding of their own relationship with hypoglycaemia. It was particularly good to see the 'compare and contrast' conversation scenarios between healthcare provider and PWD. The difference between people feeling told off/lectured and people being supported to make positive change through responsive listening and motivational interviewing.

Social Media, Why Bother with a Fad? Partha Kar, Annie Cooper, Roz Davies and Laura Cleverly
Great to see social media and peer support getting such a good response at a conference like this. Topics covered ranged from social media in support of nursing practice; tackling isolation and the building of patient communities; and whether social media could be the 'missing part' of someone's diabetes care. Not only that, but Partha Kar opened his talk by suggesting that the term 'non compliant' be removed from the diabetes phrasebook as a result of some social media interactions at the conference. The session ended with a frantic live Tweet Chat and I just hope that some of those who saw the presentations might begin to consider how to integrate social media/peer support into their own practice.

Cognitive decline in people with diabetes 3 presentations chaired by Richard Holt, Southampton
A bit of a mixed bag across these three presentations. Both type 1 and type 2 diabetes seem to associate with 'cognitive decrement' (which I don't like the sound of to be honest), though this only subtle and does not seem to worsen over time. When it comes to type 2 diabetes the Edinburgh study suggests that vascular changes may be the predominant factor. Blood pressuse has little effect, HbA1c has a small effect but smoking has much more of an effect. Overall, improved diabetes management and lack of diabetes complications seem to be a good thing as far as keeping your marbles is concerned. Conversely people with both Alzheimers and T2D are at significantly increased risk of severe hypoglycaemia.

When it comes to young people, there did not seem to be much evidence that mild hypoglycaemia was associated with impaired cognitive function in the long term. Though there may be small risks to very young children who experience severe hypoglycaemia and coma, the brain quickly becomes more resilient in older children and young people.

Hot topics - Diabetes and cardio-vascular risk 4 presentations chaired by Naveed Sattar and Jiten Vora
I was particuarly struck during Miles Fisher's presentation about assessing cardio-vascular risk in people with diabetes when he described the decision to recommend statins for the primary prevention of CVD in people with type 1 diabetes as an 'OBSAT' decision. With a twinkle in his eye he explained the acronym as 'old boys sat around a table'. He suggested that the research evidence did not support the recommendation and that there was a risk of 'over medicalising' the population. His opinion was that the presence of micro-abuminuria was a more reliable marker for prescribing statins for primary prevention in T1D.

In general terms intensively managing blood glucose levels, the earlier the better, significantly protects against CHD for people with diabetes.

Physical activity and Type 1 3 presentations chaired by Jason Gill, Glasgow
This was my last session of the conference and the one that provoked perhaps the greatest interest on Twitter. One of the slides in Rob Andrew's presentation showed a flow chart which seemed to contradict itself. Beamed off into the ether without the explanatory dialogue many people responded, "Ehhhhhhh?!" but the presentation had moved on apace. A lesson learned perhaps in the perils of trying to share complex ideas in 140 characters at speed. There was a lot of detail from Rob Andrew about managing exercise and type 1 diabetes, you can find more information here when the site launches soon. Some interesting snippets too from Richard Bracken about bone strength in T1D. I had not realised that type 1 was associated with an increased risk of fractures, but it seems that resistance training can help improve bone condition and strength.

Summary
On the whole I was really encouraged by the conference programme, and by the tangible sense of passion and commitment from those working in the field who are aiming for better outcomes and more personalised care for people with diabetes. Huge thanks to Diabetes UK for inviting me to be a part of the event.

Disclosure: My travel, accommodation and entry to the conference were paid for by Diabetes UK. I was not paid to write this post or any tweets relating to #DPC15.

25 not out - stick THAT up your nose diabetes!

At some point during the last week (I'm not entirely sure which day) I made my quarter century of living, more or less successfully, with type 1 diabetes. Twenty five years later and I've still got both feet, my eyes are pretty much unscathed and my kidneys still seem able to cope with clearing up after all the stuff I throw at them. Not a bad effort.

Also this week, I stumbled across two interlinked snippets of information that interested me:

We're dooooooooomed!

The first came via a retweet from Dr Pratik Choudary about some research from the T1D Exchange that suggests that the longer you have lived with type 1 diabetes, the more likely you are to experience severe hypoglycaemia (needing assistance of a third party, family member, friend or paramedic to recover). I've come across Pratik's work during my sifting of research for the NICE Guidelines update, and he seems to have his finger on the pulse, so was intrigued - interesting people sharing interesting stuff...

I confess I was slightly surprised at the findings. I suppose in a sense there is a certain logic to them, older people will have any residual 'helping hand' action from their own pancreas long gone, and more opportunity to have succumbed to a degree of hypoglycaemia unawareness. Still a bit odd that incidence of severe hypoglycaemia looks to increase year on year though - I would have expected a good deal of difficulty in managing BG in early childhood (tiny doses... erratic hormones... growth spurts... irregular physical activity) and certainly during teenage years (rebellion... wanting to fit in... more growth spurts and raging hormones). Even during young adulthood and middle years there's a degree of chaos going on with life in general. Particularly if people become parents themselves - when focussing entirely on yourself tends to slip into the background, replaced with sleep deprivation and general exhaustion. By contrast my own life seems to have become slightly more settled post-40. Much more time to sort out my own stuff.

When we began writing our blog it was not at all uncommon for Jane to have to help me out early in the morning from a nasty low (thanks Lantus!). When I look back, I am ashamed that I put everyone through this for so many years and did not sort it out earlier. But thanks to the support, wit and wisdom of the DOC, over the last few years I have gone a long way to reduce my hypoglycaemia in general and severe hypoglycaemia in particular. I can't remember the least time I got so low that someone in the family had to lend me a hand - but it was probably three or four years ago.

I for one have exactly the opposite experience of the T1D Exchange findings. What about you? If you are living with type 1, are you seeing more or less severe hypoglycaemia than before? Should we accept an increase in severe hypoglycaemia as inevitable*?

* The answer, of course, is NO!

Nasal Glucagon

Photo: Mike Hoskins

The second thing that caught my eye came as an email, following a presentation at the Advanced Technologies & Treatments for Diabetes (ATTD) conference in Paris last week, concerning a novel new glucagon treatment that is in development. Glucagon is used as an emergency treatment for severe hypoglycaemia. Currently it involves injecting sterile water into a vial of powder, mixing into solution and injecting into a person who has become so hypoglycaemic that they are either unconscious or otherwise unable to consume any high glucose treatment. Glucagon is a great treatment, but the current delivery method is pretty complex. I first came across the 'nasal puff' concept via Mike Hoskins in the US, who posted on Diabetes Mine following involvement in a trial of the device. It's ingenious! Developed by a tiny private company with parents of T1D children at the helm, it seems driven by passion and practicality.

I know that when I have tried to mention Glucagon kits to anyone among my family and friends they immediately take on a distinctly 'rabbit in the headlights' expression and start mumbling about "erm... yes... or I'd call an ambulance". The idea that at a time of extreme stress, possibly in the middle of the night, someone entirely untrained in giving injections would be able to calmly proceed through a multi-step process of mixing, drawing up, selecting injection site and administering (especially if I were thrashing about) seems crazy.

This new treatment involves simply 'puffing' dry powder up the nose. It doesn't need to be inhaled (designed for people who may be unconscious), simply pushing the base of the container ejects a cloud of dry glucagon into the nasal passages where it is absorbed directly. No needles, no mixing, no faffing about in the dark.

The device is not currently available, but phase 3 clinical trials are currently underway and I will watch the story with interest.

Disclosure: I was not paid to mention Locemia's nasal glucagon device (ha! chance would be a fine thing!). It just sounds like a great idea.

Change the world - DBlog Week Day 1

Thanks to Karen Graffeo this week is the 5th annual Diabetes Blog Week.

Today's topic is 'Change the world'.
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Hmmmm... Well I'd usually bang on about the power of peer support and the DOC, but since my last post was about that very thing I've decided to take this topic as more of a fantasy 'what if anything were possible' type thing.

So if it's not a cure and diabetes is continuing and if I could change anything what would I choose..?

I wish there was more honesty and fairness. Specifically when it comes to medical research and product development.

Perhaps I have got this wrong. Maybe I'm just being too jaded and cynical. I am absolutely sure that most people who undertake research are paragons of honesty and integrity, but I'm afraid I do worry about the impartiality of some research studies into new treatments which are (inevitably) funded by the companies who have invested thousands in research and development and now need to turn a profit. Small, commonplace things like studies having a 'run-in' period where carefully screened participants get to try the therapy before the trial actually starts so that people who don't get on with it don't take part. Hey-presto, when the trial data are collected - almost no drop-outs and hardly any side effects reported. Results being extrapolated and amplified with 'mathematically modelled' outcomes. If x changes to y then the model suggests that umpty bazillion people will be 50% better off (rather than simply counting the number of events that did or didn't actually happen in the sample population). Data meta-analysed to within an inch of its life and suddenly the conclusions reached 12 months ago that there was not very much benefit, get republished with a handful of results added to suddenly show something startlingly different.

The problem for me is that it actually takes quite a lot of effort to go into the detail. Part of my work with NICE as a patient representative on the Type 1 Adults Guideline Development Group has involved reading and reviewing many more research papers and results than I would ever have normally. It soon became clear to me that behind the confident assertions of the 'conclusions' by the authors of some papers there's a sort of hollow flimsiness to the whole thing. And in these days of 'evidence based' medicine this gives me more than a little uneasiness. Some major decisions are taken about what is or isn't an appropriate way of treating people are taken on the basis of medical research results some of which - to my inexperienced eye - looks rather less than rock solid. But who does that? NICE are pretty good at trying to filter though the mire most of the time, but so many decision makers, politicians and journalists seem only interested in the headline.

Now I'm not quite in the 'the whole thing is a complete Big Pharma Conspiracy' camp, but I do wish we lived in a world where I didn't have to worry about the motivations and financial background to all this. Where I didn't have to look for the agenda behind the research. Where new treatments and therapies and approaches were developed, adopted or dropped on the basis of what actually worked for people rather than what made the most money for the companies involved.

I realise that I am extaordinarily lucky to live in a country with an organisation as amazing as the NHS to underpin my healthcare, but there is only so much money to go around and I would love it if every single penny of that was being spent in the very best ways on the most effective treatments, interventions and (shock horror!) non-drug based methods like, er, you know, type 2s doing rather better when they eat fewer carbs.

Oh... and if I ruled the world Bakewell Tart would have absolutely no effect on blood glucose levels too.