Normal service will be resumed as soon as possible

Apologies for the interruption - the fluffy four-footed addition to our household has made finding time for blogging very difficult in recent months. Which is unfortunate really, because I have at least three or four posts waiting in the wings that I would really like to put together!

We picked up our young Clumberdoodle pup at the beginning of April and time has absolutely flown by since. For a couple of months before Marvin's arrival we were busily DIYing and generally attempting to puppy-proof (ha!) the house and garden a little. It's all been a bit of a blur to be honest and reminded Jane and I of a heady combination of those weeks with a newborn babe, mixed in with a good dollop of toddler mischief and a hint of teenage experimentation and boundary-pushing. Fortunately Marvin is a dog who likes a nap, and can be persuaded to do pretty much anything for the promise of a bit of chicken or nibble of Schmacko.

Around the middle of March I was chuffed to be invited by the wonderful Dr May Ng to speak at the North West Children and Young People's Network Education Day - if you'd like to get a glimpse of what went on I put together a Storify of the tweets. Alternatively, everyone's favourite Diabetes Dad, Kev Winchcombe wrote a great, but altogether far too modest blog post about the day. His talk was far more packed with laughs and interesting detail about diagnosis, transition, DIY APS and Nightscout than my blathering about spurious similarities between daily management of type 1 diabetes and Scalextric!

In the coming months I am really hoping to post a follow up to my reflections on DPC2016 detailing what I picked up from Iain Cranston's fantastic presentation on interpreting CGM data and Ambulatory Glucose Profile reports.

Additionally I have seen a number of conflicting reports/research about cholesterol and Statins in recent weeks and I'd really like to post something about that - if only to be able to process it a little myself.

Thirdly, I am honoured to have been invited by Abbott to attend an event in Stockholm in June called 'Dx' which looks to be really very interesting indeed.

Lastly I have been quietly working with a few other DOC legends (quite how I managed to scrape into their hallowed company is beyond me) on something I am only half-jokingly calling "Project Enormous". We hope that soon - perhaps in the next month or two - it will reach the point where we can release it into the wild and see if it has any 'legs', and lives up to the promise of the idea.

Exciting times.

Hope your BGs play fair in the meantime and thanks, as ever, for reading.

Disclaimer. For my attendance at the North West Diabetes Network Education Day my travel and accommodation expenses were generously paid, but no speaker's fees were offered or received.

New Clinic vs Old Clinic - Guest Post by Lucy.

After the excitement of Saturday's #t1talk and with the kind permission of someone I have only ever met 'electronically' on a forum, I am posting this account of a patient experience in clinic. For someone who has really struggled in the past, this new patient-centred approach has been nothing short of mind blowing:

"I honestly left feeling quite stunned and shocked, and with the thought "have i just walked out of some parallel universe?". It was a wonderful example of how things should be, and did wonders for my confidence in ability to communicate my own thoughts and feelings at appointments, something I've previously struggled with a lot." Lucy.

Well, as some of you may know I've been asking for a couple of years at least to switch from one local hospital to the other, due to not being happy with the way I'm treated at the hospital I had been going to. After my last appointment there, I was so surprised and upset at what happened that I went and saw my GP, explained how I felt whilst holding back the tears, and he asked me to write a letter to the consultant explaining what happened from my point of view. I'm not one for complaining but for the first time, as instructed, I wrote a 2 page letter explaining where things went wrong, asking for further explanations of the decisions I disagreed with, and backing up my point of view with evidence from official bodies.

So it was very exciting this week to have my first appointment at the other hospital. There was a bit of mix up with the appointment letters going to the wrong address so it was all a bit sudden but I got there. I don't want to name the hospitals, as I'm sure others have good experiences at the other hospital, but some of you will know where I mean.

Usually I leave appointments and start crying. I left this appointment feeling like I'd left a parallel universe.

My appt started promptly and lasted over half an hour. The nurse introduced themself and told me their name and role etc.

It is a very nurse led clinic. There are consultants too, but she explained that the nurses focus just on analysing patterns in BGs etc day to day, and that makes them pretty strong at that, whilst the consultants see the bigger picture - they're important too they just have different roles.

I was asked my opinion a lot. Am I happy with my diabetes control. Any thing I want to change or improve?

I was talked to like a competent and knowledgeable adult. My opinions werent just asked for but they were listened to and responded to.

The attitude was that I am a key part of decisions and I should steer things. It was about letting me know what they can offer me, and leaving it to me to decide what I want. If I want to see a dietician I can, if I want to see the DSN very often or very little, then we can arrange that too. If I want to communicate via phone or email, then I can do that too. Wrote down the details for me.

I was offered carb counting courses for the first time, in groups or one to one. It wasn't a "you should do this" it was a "you should know we can do this, if it's something you decide you want to do at any point".

Insulin pumps were brought up by them not me. There are several hundred people on NHS funded insulin pumps at the clinic and they are not all T1. I was told not being [classic] T1 doesn't mean pumps aren't an option, though it is more rare. They also made sure my expectations were realistic and that I didn't take it to mean "of course you can definitely have a pump".

I was asked how I find Tresiba, how do I think it's working and how do I find it. I've told previous Drs that I dont think it gives me a benefit over levemir/lantus and been told, "Yes it does, its very good, stay with it". I told the nurse that I don't think it is worth the extra cost and instead of telling me I'm wrong, she asked why and I explained. Basically we had a normal adult conversation like normal adults do rather than one person treating the other like a child.

I was asked if I'd tried the tablet that makes you pee out sugar (can't remember the name). That was mentioned as an option I hadn't tried, and that I can try it with insulin. I wasn't told "you should try this", I was told "this is what it does and how it works and the benefits of it" so that I could think about it as an option that hadn't been mentioned before.

I was asked if there is a particular consultant I wanted to see or if I'm happy to see any. I was interested in seeing one that knows about pumps but of course they're all pretty pump knowledgable anyway.

One tweak was suggested to me to experiment with, which is to try a bolus as soon as I wake up, before getting out of bed even, to stop the DP (dawn phenomenon). I was nervous about trying it because of having insulin when walking the dog, but felt comfortable with trying it - starting small - after chatting it over.

They showed interest in my Libre sensor, had heard of it, and were interested in how I found it and how it improved my life. They looked at the weeks daily BG traces I had printed off and saw patterns and generally seemed interested in the data. It must be years since anyone has even looked at the BG printouts I take and offer them. I'd been told sensor is a waste of money and not to use it at my previous clinic.

My A1c is 68, at last hospital I had been told "well that's close to target of 8% so stop the apidra now". When I kept saying my personal target is under 6.5%, I was told to be realistic and that that isn't possible without loads of hypos. At the new hospital I was listened to when I said I wanted it lower to reduce risk of complications, as I have plans for a long healthy life. Only opinion given on my BGs was that whilst they could be lower they aren't terrible, but if I want to improve them then we can work together on that.

I was asked when/if I wanted to come back to see the DSN again. It could be as soon or far away as I liked really, it was up to me. I was a bit surprised by all this 'being asked what I wanted' to be honest and didn't know what to say, so she suggested a time period and I agreed to that.

I've said or thought previously that in an ideal world, my diabetes appointments would be like my one-to-ones with my boss. He asks me what I'm happy with and where I want to improve, if there are any courses I think would help me, or any support that I feel I need. He asks what targets I want to set and where I want to get to. He offers some feedback, guidance and suggestions, but it's a two way conversation, between two competent adults. My previous diabetes appointments have never been like this. My new one was like that.

I honestly left feeling quite stunned and shocked, and with the thought, "Have i just walked out of some parallel universe?". It was a wonderful example of how things should be, and did wonders for my confidence in ability to communicate my own thoughts and feelings at appointments, something I've previously struggled with a lot.

Thank you so much for sharing this Lucy. Sounds pretty much perfect.

Edinburgh, encouragement and a call to arms

This week I have been lucky enough to be invited to speak at the 55th St Andrew's Day Symposium, hosted by the Royal College of Physicians in Edinburgh. I was given the topic of 'apps and technology' in relation to managing a long-term condition like diabetes, but obviously - not content with that - I managed to sprinkle in a wafer-thin analogy of what living with type 1 is like, along with all sorts of stuff about the #doc and the transformative potential of online peer support communities.

I tried to cover the infuriatingly fickle nature of type 1 diabetes, mentioned a few 'old favourites' like mySugr and the Accu-Chek Expert which have helped me attempt to tame my own 'diabetes monster' and also just a few of the many other things that I know help others in different ways. Gathering data and then learning to be able to apply it to make small improvements. Not forgetting, of course, the support you can get from those facing the same battles every day, whether in terms of just keeping going when it all falls to pieces (again!), or in people sharing experiences and strategies that work for them that you can consider for your own self-management.

It seemed to go relatively well, and people were very encouraging - but the absolute stand-out for me about the whole experience were the conversations I had with some passionate diabetologists after the session had ended. I had deliberately avoided focussing too much attention on the more obvious technological advances like pumps and CGM, as I had wanted the talk to have as wide a reach as possible, and also perhaps fire the imaginations of clinicians working in other disciplines as to how they might make use of similar apps/peer support resources in their own specialism.

Speaking to those diabetes specialists afterwards was something of a call to arms. Much money is being spent on healthcare in the UK which does *not* have the ongoing quality of life benefit for individuals that sensor augmented pump therapy offers - let alone the extension of life for pump users as shown in recent research. The case was made to me that it is time the diabetes online community stopped being so darned understanding about the lack of funding for sensor-augmented pump therapy. The time for accepting defeat has passed, and as more and more data are made available from increasingly positive trials, we need to start banging the table if we are ever to move pump/CGM into the mainstream in the UK.

I got the distinct feeling that there are many clinicians who feel strongly that this is the way forward for type 1 care, but that patient voices as part of that change are crucial. Certainly the impact of patient support in Scotland's wider adoption of pump therapy in recent years sets an encouraging precedent.

Yes I *know* we go on about it all the time among ourselves (often with a resigned sigh and bit of self-funding) - but perhaps the moment has come to really start ramping up the pressure.

Disclaimer. My travel, and accommodation was paid for, but I was not paid to prepare or deliver my talk. I was also invited to attend a swanky dinner at the end of the Symposium which was lovely.

64 Days with the Medtronic 640G: Ep 7 Overnight Hypoglycaemia

Those of you who can remember way back when this blog started (if you even exist, you have my undying affection for your extraordinary stickability) may recall that we were prompted to start writing a blog about my diabetes as a family after a particularly nasty overnight hypo. It was the beginning of me realising that I was *nothing* like as good at the whole 'pretending to be my own pancreas' lark as I had managed to convince myself that I was. I began to realise how much I didn't know, and that one event led me to connect with literally thousands of others wrestling their own diabetes into submission every day. My life, and particularly my diabetes management are very much the better for it.

Overnight hypos have been a bit of a recurring theme throughout my 25 years of living with type 1 diabetes. I am lucky in that I have never needed paramedic callouts, but there were many times along the way when Jane had to step in at breakfast time to 'bring me round' in the years before we started writing this blog. I look back at those early posts and am bewildered and ashamed that it took me quite so long to realise how much effect this was having on everybody else in the family. How unfair it was on them. At the time though, I guess I had convinced myself that my management was 'as good as could be expected'. I knew I was having 'A few too many highs... a few too many lows'. But doesn't everyone?

If you are the sort of person who approaches anywhere near 8 hours a night when you live with type 1 diabetes, you are spending fully a third of every day in the land of nod. That is an awful lot of time for things to go wrong - especially if your basal insulin dose is not adjusted correctly* or your requirements have moved since you last checked. You may be lucky enough to get clanging warning signs when you dip below 4.0mmol/L - enough to wake you up and sort yourself out. But you can't rely on them. And the more and longer the periods you spend below 4 during the night, the more of a hammering your hypo awareness will take and the less you will feel them. A classic vicious circle.

I am coming toward the end of my 64 days with the MiniMed 640G now (Medtronic have kindly allowed me to keep hold of their toy for a little while longer as there are a couple more posts I'd like to put together). Today seemed like a good opportunity to gather some of the snippets of video that I've been filming since the beginning and edit them into a 'SmartGuard vs Overnight Hypoglycaemia' post. Has Smartguard made any difference? Has my overnight hypoglycaemia reduced at all?

Watch the video below to find out what has been happening over the last 9 weeks. As always, I'd love to hear your comments or any questions, please leave them below or post on my Youtube channel.



*During the video, I mention how important I have found the concept of basal testing over the last few years, both on MDI (multiple daily injections) and also on a pump. Systematically testing and adjusting my basal insulin on an ongoing basis helps me to keep my meal doses and corrections working more or less as I expect them to (ha!). It was one of the most significant 'new concepts' I discovered when I first started comparing notes with other people with type 1 diabetes online. If you'd like to know more read this post by Gary Scheiner (Think Like a Pancreas) which explains the principle. It is written for pump users, but would be easy to adapt for once- or twice-daily basal insulin injection on MDI.

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.

6.5% A1c target - A reply to a comment that got out of hand

I've had a couple of comments on my post about the proposed new HbA1c target in the draft NICE guideline that is currently out for consultation. I was rattling in a 'quick' reply, when I thought - this is *ridiculous*. I can't even see this any more in this tiny box - so I've decided to post it here instead :)

Here are the comments:

Tamer Hassan said...
how do you achieve these numbers?

thanks

Tim said...
These numbers are impossible to reach...
Or at least give me some suggestions on how to reach these levels. Thanks.
Tim

'How to reach these numbers' is a question for your healthcare provider really. Don't just ask some random nutter on the Internet! However (and desperately trying to avoid sounding like Mr Smug of No 22 Smug Gardens, Bigheadshire) I have had a sub 6.5% HbA1c for over 3 years now, so I know that it *is* possible if only perhaps for the lucky few. Plus I've never had fewer hypos in my life with diabetes either - so it's not that I am 'paying' for A1c improvements with the hefty cost of Severe Hypoglycaemia.

I cannot really tell why some people seem to put in so much effort and get such scant rewards, and that is why I think individualised targets are SO important.

But it does seem pretty clear to me that the closer you can get to those standard-issue BG targets (5-7mmol/L waking, 4-7mmol/L pre meals and <9mmol/L by 2 hours after meals) for as many days in the week as you can manage, the closer you will get to these kind of tough, aspirational, borderline non-diabetic A1c targets. My own HbA1c has fallen by around 1.5% in recent years, and I think only around 0.5% of that is attributable to the pump - though Artoo has gone a LONG way to reduce my number of irritating low-level hypoglycaemia dips. When I look back over the changes that I have made in recent years I can see a few things that I think were important. I don't offer these as any kind of guide or advice - it's just what I did.

1. Education. Get access to proper structured education regarding diabetes management. In the UK we have DAFNE which is highly thought of, but other options are available. Things that should be included (in my opinion) are:
   
   1. carbohydrate counting, working out how to check and change insulin:carb ratios for different times of the day
   2. SMBG technique - when to test and what to do with the results *including* basal testing to PROPERLY adjust basal on an ongoing basis
   3. correction factors - when and how to correct (with insulin or fast-acting carbs) to aim bring you back into range without jumping aboard the gluco-coaster
   4. exercise and alcohol
   5. dealing with illness
   If structured education courses are not available in your country/area you can do a lot worse than buying 'Think like a pancreas' (Scheiner), 'Type 1 Diabetes' (Hanas) or 'Pumping Insulin' (Walsh/Roberts) which cover much the same ground. Though the benefit of peer support in group sessions should not be underestimated



2. Test more often AND RECORD THE RESULTS. Find some way of keeping notes daily as you go along. What you are eating, units and timing of doses (how long before... split doses...), exercise, mood, everything! Without a fairly detailed set of records I find it impossible to see what is going on. Personally I still love mySugr for this.



3. Gadgets - seek out new tech that can help you manage your diabetes more easily. It might be a 0.5u pen; a smartphone tracking app, or copy of 'Carbs and Cals'; or it might be a BG meter with a bolus wizard so that you can have properly fine-tuned ratios without having to worry about keeping the maths easy. Additionally, ask your clinic about access to Insulin Pump therapy and CGM.



4. Seek peer support - join a forum or two, join Twitter, read some blogs (thanks!) or even *crazy!* join a local group and meet face to face. Living with diabetes is tough, but it's even harder if you are battling on your own. For everyone there's a little corner of the internet that can provide support, encouragement and shared experiences.

At the end of the day we each have to find our own balance between living a life and managing our diabetes. Somewhere in the middle you'll find your perfect A1c and it won't drain all the joy out of life to reach it.

Good luck :)

Medtronic MiniMed 640G 'SmartGuard' Pump - Preview

The Medtronic 640G launches Feb 2015

I was absolutely made up to receive an email a few weeks back that invited me to go along to the Medtronic UK 'Bloggers and Patient Advocate' meeting in sunny Watford today. It seems that Medtronic are keen to connect a little more with the diabetes online community in the UK, share a little of what they are up to and generally get some grass roots feedback. The group is a mix of MDI and pump users (Medtronic, Animas and Roche, with and without various CGM alternatives all present). It includes both people with diabetes and parents of children or young people with diabetes. It was lovely to meet up with a glittering array of familiar and less familiar faces, Annie (@understudypanc), Lesley (@INPUTdiabetes), Laura (@ninjabetic1 and #ourD), Lindsay (@LwSweetpea88), Sue (@desangsue), Dave (@SowerBee), Chris (@grumpy_pumper), Paul (@TheTeamBG and #GBdoc), Gavin (@Diathlete), Kris (@diabeticbanana), Kyle (of @mysugr), plus @JDRFUK youth ambassador George (and his mum!). We were joined by 6 folks from Medtronic who were very excited by some of their new toys that are just about to launch. I believe that this group has met several times before with more of a 'brain-picking' workshop feel, but today was much more of a full-on sales pitch with a sneak peek of the new MiniMed 640G insulin pump which launches in the UK, Sweden, Denmark and Australia on the 1st 2nd of February (regrettably it looks like FDA approval for the US could take years). We were lucky enough to get a short amount of hands-on time to play with the 640G and I just wanted to share a little of what I saw today. I won't be able to go into too much detail for a full-on review here I'm afraid, because there was LOT of information shared and while I tried to take some notes, all too quickly we had to hand the devices back in. Plus since the official website doesn't launch for another couple of weeks I've nothing to check against. I will try to get someone from Medtronic to glance over the post and set me straight if any of this is complete nonsense. I'll post (and add think about ignore mark) corrections as necessary :)

Those familiar with Medtronic's Veo may have come across the term 'Low Glucose Suspend', the facility where overnight the Veo (when used with Enlite CGM sensors) can automatically stop basal insulin supply if the pump detects a predetermined low glucose threshold has been passed. This has been shown to significantly reduce the severity and duration of overnight hypoglycaemia in clinical trials and was welomed (particularly by parents of T1 children) as a major step forward towards developing the 'artificial pancreas'.

The MiniMed 640G takes this approach to a whole new level with 'SmartGuard', an algorithm that begins to take effect significantly before you have hit your 'low' level, attempting to dodge some of those pesky hypos altogether. The sensors are Enlites again, but with a new (and apparently much improved) 'Guardian Link' transmitter to boost performance.

More on that later, but first a quick overview:

• Colour screen which apparently reads easily in sunlight
• Waterproof (yay!) including swimming
• Reservoirs available in either 180u and 300u
• Up to 5 different basal patterns with up to 48 rates per 24 hours each.
• Pairs with Contour Next Link USB (new 2.4 version)
• Limited bolus options via meter, full bolus wizard on pump
• Completely re-worked interface with many more 'user-friendly' options and updates
• More customisable alarms (and at louder volumes)
• Already licensed for use by children
• Size-wise it's very similar to the Veo, just a few millimeters taller, wider and deeper

SmartGuard
The thing Medtronic were clearly most excited about was obviously 'SmartGuard', so it's probably worth trying to note down what I can remember about how that works. SmartGuard builds significantly on the premise of Low Glucose Suspend by making the whole thing much more predictive. While Low Glucose Suspend only kicks in when you are already registering low, SmartGuard acts earlier trying to head off the low by temporarily stopping basal (in much the same way I started doing while wearing a Libre sensor - see 'new technique'). They had a snazzy graph in the presentation to explain how it works, which I've attempted to recreate here. On the pump you set a 'low' limit that you do not wish to fall below - anywhere between 2.8 and 5.0 in 0.2mmol/L increments. Above that the pump sets additional 1.1mmol/L and 3.9mmol/L guides. SmartGuard is triggered if sensor glucose values fall below that upper line (3.9 above your low limit) AND are falling sharply enough that you are predicted to fall below the 1.1 line within 30 minutes. All insulin is stopped for at least 30 minutes from that point (including basal and any partial dual or square waves still in progress). If your numbers stay down, the insulin stays off for a maximum of 2 hours. Basal delivery (only) automatically resumes once you have risen above the 1.1 line AND are predicted to remain there for the next 30 minutes. Users can, of course, cancel the SmartGuard intervention at any point (eg if they would prefer to treat the impending low with some tasty fast-acting carbs. Rather neatly you can also choose whether or not the 640G alarms or alerts at any of those points and even tailor what times of the day (or night) to switch SmartGuard on or off. Alternatively you can simply run the system as the current Low Glucose Suspend works.

It was claimed that in the 'Pilgrim' study, the same algorithm that powers SmartGuard was able to avoid 80% of potential hypoglycaemic events both day and night. If those results could be reproduced 'in the wild' it would be nothing short of groundbreaking. A handful of people have recently been able to use the 640G on a trial basis at Kings College Hospital and two of them (including @desangsue) shared their experiences. Responses from other hands-on users are also very encouraging and seem to suggest that many found SmartGuard alone was sufficient to cope with moderate exercise. After a short while to build trust, many were also happy to simply let SmartGuard do its thing silently and alarm-free, only realising when checking the pump later that they had been spared a low-level dip here or there by some automated basal jiggery-pokery. The only mandatory alarm that sounds would be if your sensor glucose fell below your 'low limit'. This is a good thing. But the customisability of those alarms, while preventative action is automatically taken without confirmation being required seems to go a long way to prevent CGM 'alarm fatigue'.

Fancy new meter
The 640G pairs with a Bayer meter that looks just like the existing Contour Next USB, but this souped-up '2.4' version has some extra cleverness under the hood. For starters you can use it to deliver a quick manual bolus of any number of units you choose without having to fish the 640G out of your pocket. You can also create up to 8 bolus presets (which can include predetermined square or dual-wave options and doses) on the 640G that can be fired from the meter. Frustratingly you cannot vary the doses of these presets from the meter itself at the point of delivery - which would make this much more useful for me - and neither can the meter act as a fully fledged bolus wizard as it does with Roche pumps. However *some* meter bolus options are certainly better than none, and I can see that these could be very useful for snacks and preset mini-corrections or standard preboluses. The new BG meter also acts as the USB conduit for uploading data to the Carelink software package which (mercifully) is also getting a complete overhaul very soon.

Sensors schmensors
That's all very well you may say, but I'm about as likely to get funding for full time sensors as I am to become the next Pope - is this all about SmartGuard, or is there anything here for non-CGMers?

It is true that Medtronic are putting a lot of emphasis on SmartGuard - they are keen to describe the 640G as a 'system' rather than just a pump. It seems they are trying to work with Healthcare Professionals and NICE, seeking to allow more people to access this sensor augmented, 'virtual pancreas' approach. Swift murmerings were made about price points and volume but no real detail given as to if (and how much) sensor cost may fall if there is a greater uptake.

However even without all that sci-fi automation there is much here to please regular pumpers.

A colour screen is pretty much a given these days, but the layout and icons here are well thought through and in themselves allow quick access to a detailed and drillable overview, similar to but richer than the 'back button' on old MiniMed pumps. Bolus and basal adjustments are available direct from the 'home' screen, and everything is navigated by the 4-way/OK controller plus two other buttons - one for 'menu', the other for 'back'. Pleasingly, pressing and holding the 'back' button takes you directly to the home screen however deeply you are embedded in within menu options, which is a nice touch.

A great deal of attention seems to have been paid to the available options to make the pump more customisable and personalisable for individual users. For many things (such as basal patterns) you can now choose named versions eg 'work day' or 'illness' that make them more self explanatory to use, alternatively you can still opt for the more usual numbered options. You also have the option of setting all sorts of presets, including temporary basal rates of predefined length/intensity (again with named alternatives). Whatever you choose to populate from the available options in setup screens get shown in the selection menus, but you don't have to wade through dozens of items that you never use if you don't want to set them up. So you might choose to set just two of eight available TBR presets one for 'moderate activity' and another for 'light activity', then when setting a TBR you can choose either of those or dial in a custom one. Overall it felt logical, intuitive and that several regular tasks would be faster to achieve. The added complexity might mean an additional button-press here or there for one or two things, but in the hour or so we had to play with the 640G most things I wanted to access within a few presses I could.

Battery life is anticipated to be around 2-4 weeks, depending on use. The 640G needs the slightly larger AA batteries (rather than the Veo's AAAs) to power the colour screen. In the top menu bar the battery (and other) icons re-colour to indicate their status. On the battery front, as well as the usual 'low battery' warnings at 25% and again (if I remember right) at 5% there is also an inbuilt 'get out of jail' rechargeable battery that will allow the pump to limp on for up to 8 hours if you find yourself stranded in a motorway traffic jam or somewhere with no shops over a Bank Holiday having paid no attention to the icons/alerts when you set off. I also unwittingly tested the "what happens if you need to change battery in the middle of things" situation and a trial TBR I had set running happily carried on after I took the battery out to have a look. Another neat trick is that the standard-issue belt clip can be swiftly detached and is moulded in such a way that it can be used instead of a coin to unscrew the battery cap. Just a nice bit of attention to detail which speaks highly of the amount of effort Medtronic have put into the design of things.

Infusion sets and reservoirs are exactly the same ones used in the Veo, but special mention must go to the 'Infusion set change' alarm which you can set as a reminder. This particularly caught the imagination of Paul B who said that as a feature, it was pretty much enough to win him over on its own.

My biggest disappointment on the day was to discover that those infernal (and entirely useless) TBR hourly chimes are still present on the MiniMed 640G and it doesn't look like you can turn them off either. After all the effort that has clearly gone into usability and user-experience... The mind boggles. [EDIT: This turns out not to be the case after all. See the end of my compare/contrast video blog for details.]

To be honest I'm going to have to stop there - it's suddenly got rather late and I had thought I was just jotting down some quick notes. It was a very interesting day and there were other snippets (such as the iPort) that will have to follow later.

In short, I will have had Artoo for 4 years in November this year, at which point the warranty runs out and my robot counterpart begins to live on borrowed time. While I'm not champing at the bit for a new pump, I had absently been wondering what I might look at next. I am still interested to find out more about Roche's Insight pump. Omnipods don't feel right for me, and until today I was fairly certain that the Animas Vibe was my front runner because of Dexcom integration (and longer sensor life if I ever take the plunge to self fund). I know that for many the lack of a fully functioning remote handset on the 640G will be a dealbreaker, but that really doesn't bother me much. Today has given me much to think about and Medtronic's new offering very clearly sets itself apart in the market by doing something that absolutely no other pump can do.

Video blogs now available

Update: I have been given the opportunity of trialling the MiniMed640G for 64 days and will be posting video diaries of my experiences. Watch the videos.

Disclosure. Medtronic generously paid my train fare and laid on a tasty lunch. I was not asked and have not been paid to write this post or publicise their products in any way, but thought you lot might be interested.

Diabetes Speed Dating Clinic Type Thing

Some months ago I found myself looking back over the past few years.

If you've read our blog before (congratulations on your uncommon stick-ability) you may remember that we began writing about my diabetes as a family as a result of an unusually nasty hypo. One which made me question whether I was quite as competent at managing my diabetes as I liked to think I was. Posts from others in the household have dwindled rather, and you've ended up stuck with me. Sorry about that. But I look back over the past few years and realise that I have been on a full-on misty-eyed X-Factor-Strictly-Voice-finallist 'journey'.

I was reminded about this yesterday while reading a blog post by The Grumpy Pumper about his own story of venturing into the Diabetes Online Community (DOC). I have had similar conversations with Dave (@SowerBee) previously too.

It seems to go something like this...

1. Get diagnosed
2. Learn to muddle along in your own way, with varying degrees of success
3. Never, or almost never, meet or speak to another actual real-life person with diabetes
4. Feel slightly isolated and faintly dissatisfied with how you are doing but don't know what to do about it
5. Lose a bit of faith in suggestions made by various healthcare professionals/clinics/consultants/registrars/DSNs (what do *they* know - they don't live with this day-to-day, harrumph etc)
6. Carry on for 5/10/15/20 years
7. *Something* happens
8. Look for support online and/or meet other PWD face-to-face (eg on DAFNE)
9. Lightbulb moments ensue
10. Engage, share, try new strategies, feel empowered
11. Understanding and management of condition is transformed

Now here's the thing.

This is a pattern I see repeating, time and time again in the experiences of others just as it did with me.

But there are still so many people at point 5 or 6. People for whom the standard structure of clinic appointments just isn't quite working, but who either don't realise that 'peer support' like the DOC exists, or who would run a mile from the very idea of it, believing that it is 'not for them'. I know the second group well. I was a fully paid-up member for all the years that deep-down in my heart I knew I was struggling a little, but made myself believe that 'this was as good as could be expected' and 'nothing works'. Of the 300,000 people living with Type 1 in the UK how many are connected with others? 3,000? 10,000? That still leaves the vast majority 'soldiering on' on their own with only an Annual Review for company.

So what can we do for them?

Don't get me wrong. I'm not saying that peer support could fully replace 'proper' consultations with qualified and well-trained healthcare professionals. I am aware that dark, weird and scary corners of the internet exist, where all sorts of odd ideas are bandied about as fact (though these are hard to maintain in well-populated, mixed groups and in my experience the DOC doesn't stand for nonsense). But I'm also aware that there is nothing quite like hearing experiences of someone in your position, who does live with the same condition as you every day. Who faces the same struggles and has tried strategies that you might consider.

I've also spotted another phenomenon. If you attend a 'meet up' of forum posters, bloggers, tweeters or others who live with diabetes you will not be able to get them to shut up. In fact, you will struggle to get a word in edgeways. Questions will be asked, approaches and strategies compared, support offered, understanding and empathy for the sheer relentlessness of it all given freely.

I'm also aware that every day, up and down the land, dozens of people sit side-by-side with other people with diabetes in stony silence.

And this strikes me as odd. Or at the very least a massive missed opportunity.

I've been meaning to write this post for months, but kept putting it off because I could never quite get my head around the details. To be honest I couldn't even work out a proper title for the post (this you will have noticed). But the time has come to just 'put it out there' to see if some brave Consultant or Clinical Lead can do something with it. Someone like Partha perhaps?

Here it is: Wouldn't it be great if there was a way to harness all those wasted minutes in the waiting rooms at diabetes clinics. If there was some way of facilitating peer discussion and support while we are all sat there waiting for our number to come up. At the very least it might prompt some actual questions to ask in the appointment itself, rather than everyone just sullenly descending into smile-grunt-nod territory.

Something a bit like speed-dating. Sit opposite a person or two for 5 minutes, ask them how they are getting on. How long they have had diabetes. Is there anything they particularly struggle with. Do they have the same problem I do with this or that? What do they do about it? Ring a bell, everyone moves around... 'You'll never guess what that last bloke said...' 'Really? Oh I get that too...'

Of course there would have to be some sort of 'opt out' for people who simply can't face the idea. But I'd love it if we could break the unwritten rule in diabetes clinic waiting rooms that 'thou shalt not say anything to anyone'. For people to be actively encouraged to compare experiences and support each other. So that each clinic appointment would combine the very best of both D-meetups and HCP input.

If that was on offer - would you join in?

Lantus 0.5 unit pen at last - Pendiq Intelligent Insulin Pen

Lantus 0.5 unit pen at last - Pendiq

I *love* the DOC.

No really.

I absolutely love, love, *love* the DOC.

Just a quick glance at Twitter and I can be cheered, encouraged, supported, made to laugh and occasionally brought to tears all at once. Other times you go looking for some lightweight wit and wisdom, or just to see what folks are up to and suddenly discover some weighty new piece of research, campaign to fight for or better still... everyone's favourite diabetes benefit an exciting-sounding new gadget.

Before Artoo became my constant companion a couple of years ago, I wrote quite a few posts about Lantus basal insulin. I spent quite a bit of time trying to wrestle Lantus into submission, and eventually we got to the stage where we muddled along bearably, but it's fair to say that one of my main motivators for starting pump therapy was to get 'proper' basal coverage, that accurately reflected the ebb and flow of my body's rhythms over a 24 hour period.

Comparing notes with other users it seems I was not the only person to be frustrated by Sanofi's rather less than enthusiastic approach to insulin delivery. Most of the injection pens that fitted Lantus were, frankly, nasty. And none of them offered doses in increments smaller than 1 unit. This might be OK if you are on higher doses, but many T1s are quite sensitive to insulin. I'm not quite sure how small children cope, for example. The minimum dose adjustment could well be a significant percentage of the total.

The other pen-related problem I had fixed around the same time related to my terrible memory. It may be hard to believe it you do not live with diabetes yourself, but after a few thousand injections they can become so automatic that you barely think about them. Sometimes you have absolutely no idea whether you have injected your dose or not. I changed bolus (mealtime) insulin to Humalog to get hold of a pen with a 'dose memory' the Humapen Memoir so that if I was ever unsure I had some means of checking that didn't involve me having to write something down, which I was just as likely to forget to do... Or possibly even to remember to write it down, but then forget the actual injection. See what I mean about my memory? Hopeless! Sadly the Humapen Memoir has since been taken off the market and it looks like its development has been abandoned. So now the only memory-enabled pen available on prescription in the UK is the NovoPen Echo.

But...

Thanks to a Twitter conversation I chanced upon earlier this week, I now know there is an alternative. And a very interesting alternative it looks to be too.

Enter Pendiq, the Intelligent Insulin Pen

Pendiq is a new breed of injection device from Germany initially launched in 2011 and relaunched in 2012. Such is the ruthless efficiency of German engineering that this pen boasts not just 0.5u accuracy but increments of 0.1u (from 0.5u upwards). Delivery is unlike any other pen I am aware of - dial up the dose on the display, press the button and a precision motor delivers the insulin at 2/u per second. The pen stores and displays around 2 months worth of injection doses and timings on an LCD screen and the website boasts all sorts of download opportunities and compatibility with logging software such as SiDiary. The battery is rechargeable and the device seems to be compatible with 'standard' insulin pen needles. The Pendiq is compatible with Lilly and Sanofi-Aventis insulins, which means that both Lantus and Humalog doses are now available on MDI in 0.1u dose increments. Heck you can even choose from five funky colours!

Unfortunately there is a snag. Isn't there always? It seems the Pendiq is not currently available on prescription in the UK. It looks like you can buy it via the website, but with the shipping/delivery it will set you back almost €185 (around £150). So not cheap... by any means. You would also probably be wise to speak to your DSN/hospital/clinic to get there guidance if you were tempted to spring for one before you part with any cash.

If you'd like more information, visit www.pendiq.com

Does social media empower patients or confuse them?

That was the question posed at an event held by Brandcast Media as part of Social Media Week London yesterday (no, me neither). I was chuffed to be invited to attend by Diabetes UK whose 'Digital Engagement Executive' the irrepressibly perky Amy Burton was speaking on the panel. Alongside her were George du Toit a Paediatric Allergy Consultant, Andrew Schorr 2x cancer survivor & founder of Patient Power and Sneh Khemka, Chief Operating Officer of Advanced Oncotherapy. Charlie Grieve, Brandcast's CEO holding the reins and gently steered the conversation.

When I arrived at Brandcast's groovy offices just off Regent Street the room was already filling up with a heady mix of cool and confident Social Meeja types, healthcare professionals and charity representatives. By the time the discussion started it was standing room only. I found a quiet spot and spent a few moments debating whether to avail myself of the funky Moleskine-esque notebook in Brandcast's signature bright pink. I gave Amy some encouraging smiles and nods.

What followed was a fascinating conversation about the impact of Social Media on patient experience. Almost inevitably the event was live streamed, and heavily tweeted under #smwdigitalhealth. Andrew Schorr gave a powerful account of his own experience, where the information and confidence he received through social media interactions led to him receiving completely different care, without which he quite probably would have died - "Social Media saved my life". Here are a few other snippets that stood out to me during the course of the evening:

"I have not a doubt in my mind that social media is empowering patients. But you need to know where to look/where not to look" Sneh Khemka

"Different people value and need different Social Media channels - everyone finds their own niche" Amy Burton

"Medics are, by and large, cautious of social medial" George du Toit

"Patients who share a diagnosis can push for therapies or question the use/effectiveness of certain drugs by working together" Andrew Schorr

"Some social media platforms are becoming the Trip Adviser of hospitals. Patients can assess the quality of their own care" Sneh Khemka

"HCPs need training in use and governance of Social Media" George du Toit

"What one change would I like to see? For more HCPs to engage with online communities" Amy Burton

As expected there were some concerns raised over the nature of some of the 'advice' in circulation in the FaceBlogTwit-o-sphere, over privacy and the potential (mis)use of data shared over social media, some of which can be quite staggeringly personal and sensitive. The general feeling though was that patients are making their own individual decisions about what they share with whom - and many of the online communities (from my perspective I would say particularly the DOC) are quite good at self-regulation, suspicious of 'miracle cure' nonsense and take all content with a healthy pinch of low-sodium condiment.

I suspect that quite a few in the audience were interested in gaining insight into how to 'leverage' social media channels (sorry, terrible industry phrase) on behalf of healthcare clients, private health providers and Big Pharma, it was encouraging then, that the panel recognised the crucial nature of transparency in these interactions. These online communities exist and are powerfully helping patients, but they are savvy, often fiercely independent and quite naturally suspicious of commercial interference. They will very quickly smell a social media rat if businesses come rampaging in with a clumsy marketing agenda.

It was great to hear the two healthcare professionals on the panel speaking so enthusiastically about their own use of social media in clinical settings (which seems to be on the increase as newly qualified HCPs come through who are already engaged in social media). Additionally there were some tantalising some glimpses of what might be coming next. For instance I had not heard of 'Watson' a computer system that is, apparently, better at diagnosing cancer than many doctors because it uses a constantly-updated database of research and evidence rather than relying on what it can remember from medical school and what Dr Sheh described as 'your own experience, prejudices and preconceptions'. What we need, he suggested, was the computer to number-crunch the data and evaluate the most likely diagnosis based on all the available evidence but then a sensitive, compassionate medical professional to interpret/relay that diagnosis in the light of the individual person in front of them.

The final question for the panellists was, 'What one change would you like to see?'. Half the panel wanted to see more involvement from healthcare professionals in social media communities, while Sneh Khemka rather pragmatically suggested that giving interactions/consultations over social media some sort of tariff so that healthcare professionals would come to see them as 'proper' earning work would be a sure-fire way to drive that.

We shall see!

Disclosure and all that. I wasn't paid to blog about this or attend the event. Diabetes UK kindly paid my train fare and Brandcast Media gave me a nice bottle of beer and some tasty nibbles at the end of the event. I decided against taking the notebook.

Annual reviews and first appointments - A guide for junior Doctors,trainee DSNs and other HCPs

To state the ridiculously obvious - Type 1 diabetes is not always very easy to live with.

The relentless requirement to monitor, juggle and account for a hundred-and-one variables (food, doses, exercise, weather, stress, hormones... you know the drill) while trying to live a relatively normal life day to day can be quite a frustrating business.

It is a great comfort to know then, that we have a number of ferociously clever and wonderfully kindly professionals that we can regularly visit who are dedicated to supporting us in our daily battles with the big D. Most of us will only get a precious few hours a year to receive this input, so it's important that we can make it count.

A month or so ago someone who I consider to be quite a good friend (which is odd really since our contact has only ever been of the remote and electronic variety) shared an experience of an appointment with a young and perky Registrar which, from what I can gather didn't work out too well. I think it's fair to say that my friend has now - some weeks later - just about managed to come down from apoplectic-teeth-grinding rage into the significantly calmer strangers-crossing-the-street-to-avoid-thunderously-angry-expression.

This got me thinking about what it is that we long-term pancreas-impersonators (or newly diagnosed for that matter) might hope for out of our precious appointments. If you've not done many D clinics before (or even if you've been running them for years!), here's what I would hope you would bring to the party:

Hello
First impressions count. I've met a lot of HCPs for first-time appointments and you would be surprised how many don't introduce themselves. It's a busy clinic, I realise I may never see you again, but it would be nice to know who you are.

Please, please, please just take a moment before I come in to skim read my file. If you are checking that information is up to date then be a bit careful of how you ask those questions. "So... you have type 1 diabetes?" might seem innocent enough, but some people you will be seeing might have been living with their condition for longer than you've been alive - so it's not really a question that needs to be asked. T1D isn't really something that's going to go away. Know my type. Know how long ago I was diagnosed. Know what direction (if any) my HbA1cs have been moving recently and what insulin(s) I am using. If you are checking records for accuracy and up-to-dateness, tell me that you are checking. Otherwise I'll think you are an idiot.

It isn't your fault
This is slightly unfair, but I'm afraid there's nothing to be done about that. You have no way of knowing what sort of horrendous appointments I have endured in the past (I haven't actually, but many have). The last thing we both want is for the steel shutters to come down behind my eyes and for me to descend into 'smile-and-nod' grunting, just waiting to leave - that will do neither of us any good. Here are a few of the states-of-mind in which I have arrived at appointments over the years:

• I have identified a problem or issue and I have no idea what to do about it. I'm hoping for suggestions.
• I have identified a problem or issue and I am working on it. Your suggestions might be something I've already tried and found not to work.
• I have identified a problem or issue and I think there's a gadget/change of insulin that might help.
• I know things have been going OK recently and just want my results, thanks.
• I know my results are a mess and hope I'm not going to get some kind of telling off. Don't you understand how impossibly difficult this is to do day to day?
• I'm past caring, nothing I am doing seems to make any difference and previous clinic suggestions have just made it worse - I would ask about psychological support, but what's the point?
• I don't have time for this and want it to be over as soon as possible.

You will need to develop a forensic, interview technique to glean from my merest eyebrow twitch which of those states-of-mind I am in. Alternatively - you could just come right out and ask me at the start - there's a thought. Ask open questions, be interested in the answers. Diabetes is not always textbook, you may know a lot about diabetes that I don't, but I'm the one muddling along with my diabetes 24 hours a day. As we say in the DOC - Your Diabetes May Vary. Most often I'm not expecting you (or even wanting you) to give me definitive answers, but rather to suggest strategies, principles or techniques that I can try out. And be asked about what sort of level of support and follow-up I want.

Not a number
I am not my numbers. I am not my A1c, my high this day, my low that day. These are information, but they don't define me and certainly don't necessarily represent the amount of effort I am putting in. Ask me what I'm aiming for, and why. If you think my A1c is too high or (too low) don't say anything until you've found out what I think about it. Ideally you've already picked up some story-so-far clues from my file (see 'Hello'). There is always ALWAYS something to improve. I want us to work together to make my numbers just a little bit better by the time my next appointment comes around, but I don't need telling off. Ever.

Questions, questions
Questions are your friend - I know you know this already, but it is worth restating nonetheless. Ask me what I am looking for. Find out what I am already doing (or considering starting) to try to reach my goals. That way you'll be in a better position to give me some really helpful pointers. You'll realise, of course that I may have come in with my guard up. You might have to tease the truth out of me, but asking the right questions will make us feel like more of a team - that you are on my side. Be especially careful if I have brought in any information, charts, print-outs and so on - you would be astonished how often these carefully prepared sheets are simply brushed aside. Pay them attention - ask me if there's anything I've spotted that needs looking into. If you spot what you think is a pattern, ask me whether I think it is significant and if not, why not. Sometimes type 1 diabetes is just random and frustrating, but a fresh pair of eyes and a healthy discussion about tactics and options can be just the thing to open up a new line of experimentation. Think of yourself as a top-flight Premiership football coach. Talk to me about strategy, technique and tactics rather than how far to kick the ball.

Never assume I know something
You may be up to speed with all the latest diabetes management techniques and fully immersed in decades of diabetes research. As a long-in-the-tooth patient, you would be forgiven for believing that with all my years of experience I am bound to have come across all this knowledge already. Carb counting... basal testing... dawn phenomenon... difficult foods... correction and insulin:carbohydrate ratios... I may know about these, but ask a carefully phrased question to assess my current approach to challenging day-to-day management situations in order to fill in any blanks I may have in technique and understanding. Once again the questions are crucial - otherwise we are into dangerous chicken-ovulation-inhalation territory.

Never assume I know nothing
Obvious really. But few things will sour our fledgling relationship quicker than you assuming that I have no idea what I'm doing. You never know... I might be one of those people who has read many of the academic research papers that are freely available online these days. I might have spent time keeping up with developments in technology, treatment and even the minutiae of NHS funding options because this stuff really matters to me. I may even have some interesting opinions - it won't hurt to ask.

Never assume. Anything.
That's your 2 second 'lift test' right there. If this is the only bit of this post that you remember, then we'll get along fine.

What about anyone else? Any hints and tips for HCPs for the perfect first appointment? As ever, comments welcome below.

mySugr Review - The best Diabetes logging app ever?

When we began this blog almost exactly three and a half years ago (crikey!) I had just made two important and, in their own small way, utterly life-changing discoveries.

One was that I wasn't anything like as good at managing my diabetes as I liked to think I was. And the other, and perhaps more important, was the extraordinary power, knowledge, support and cameraderie of the DOC hive mind. At that stage I felt that my control was 'as good as could be expected' and that diabetes was just pretty random every now and again. Years later I now understand both of those statements to be completely true, but in a very different way - and with the benefit of signficantly better control and confidence in handling my diabetes.

One of the main changes I made at that time, and perhaps the one that transformed my self-management more than any other, was to start testing more frequently, and to record the results more systematically. This information then enabled me to spot patterns in the apparent 'randomness' and apply the knowledge & experience of the DOC to experiment with the whole 'pretending to be my pancreas' business. Identify a problem... find out what others do... experiment... try something else... develop a strategy... test... review... adjust. None of that would be possible for me without a decent feed of data to try to keep track of the million and one variables.

At first I used the ever-faithful pen and paper route, which is fine in its way, but doesn't really let you do anything with the information you are so carefully collecting. Shortly afterwards I started using different apps on iPod Touch and later iPhone (other smartphones are available etc...). I must have tried the best part of a dozen apps in quick succession before settling on one which allowed me to log and track everything I wanted to without making me want to chew off my own fingers in the process. A couple of years ago I saw a mention by Mike Young of Diabetes in Spain about an app he was using called mySugr so I had a look. I've been using it ever since. Recently they launched a major upgrade as v2.0 and to my mind mySugr has now become something really rather special.

Overview
Well let's see...

Fast/easy data entry? Yup.
Pretty graphs? Absolutely!
Useful averages over different time frames? All present and correct.
Additional analysis like SD and number of high/low readings? Correctamundo.
Suitable for pump users? Certainly.
Export data in a variety of formats? Of course!
Fun? Yes!

Erm.... what?

This I think was the biggest difference I found when I first started using mySugr. The team behind it (which includes quite a high proportion of T1s) understand that logging, while potentially *very* useful is not the most fun to be had. Underpinning all mySugr's seriousness and analytical clout is a healthy dose of wit and charm. When you first set the app up you choose a name for your diabetes monster and every time you make an entry you go some way to taming it day by day. They turn diabetes logging into a sort of game, scoring points with every entry made. This may not appeal to you from the outside, but there is something inexplicably smile-inducing about the animated gurgling reactions of your monster when you make an entry - especially one that is above or below your ideal range, which is exactly when I need distraction most.

mySugr allows you to log all the things you would expect - BG (in mmol/L or mg/dl), carbs (in exchanges/CPs or grams), meal boluses, exercise/activity, basal dose for those on pens/syringes and temporary basal rates/duration for pumpers. Naturally you can also make copious notes alongside your entries which I find essential in terms of interpreting the data later. In addition you can also capture photos of meals and even add the geographical location at which the entries were made which is a nice touch. Entries can be tagged with one or more predetermined icons which range from the inevitable 'breakfast' and 'sport' to more emotional options like 'stress' or 'chilling' adding further detail to records. A very useful 'search' option allows you to quickly scan back through months worth of entries to find what you last tried for 'pizza' or 'chinese takeaway' then jump to those records to see how it went and what you might try this time.

mySugr operates on a 'freemium' basis. The fundementals of the app are available absolutely free of charge, but full functionality (eg photos with records) requires a 'pro' subscription. When you install the app you get all the bells and whistles for a few weeks. Following that you can just use the (excellent) core functions, pay a small monthly fee to upgrade to pro, or complete motivational 'challenges' to earn days of pro subscription for free by logging several entries per day or exercising. EDIT: As of January 2014 mySugr seem to be moving away from a subscription-for-pro set up towards a single payment model.

The data analysis on offer in mySugr is excellent. The home screen (above) gives you a general overview of how things are faring over the last week/24 hours in different ways. The graph itself recolours to give you instant feedback if things are altogether too high/low (red) or a bit marginal (amber). There is a logbook screen with pleasingly swooshy draggable graph and table of entries that allows you to quickly scan back through previous week/month - the graph dragging side to side as the table of entries scrolls up and down. A separate analysis screen allows you to see 7-day, 14-day and month-by-month changes in average BG and crucially the SD of those entries (how closely grouped or wildly scattered they are). Dig a little deeper and you'll see a summary of numbers of high/low readings, tags, photos and other useful detail to help you work out what has been going on. If you enjoy your own number crunching and/or want to amaze and impress your clinic with how marvellously you are getting on you can choose between different .csv formats for Excel or export your data as a slick PDF report.

mySugr is registered as a 'medical device' and CE marked (I think it is perhaps the only logging app to have achieved this). Data storage is safe and secure and the entries are seamlessly uploaded and synced in the background. I experimented early on with this and if no data connection is available mySugr will just wait patiently without pestering you until a connection becomes available. If you own more than one device you can log from whichever is closest to you at the time and the data will stay in sync on all of them.

What? No niggly complaints?
If you've read a review here before you will no doubt be waiting for the 'but...' followed by a long list of things I really hate about mySugr. Well it surprises me as much as it might you that I can hardly think of *anything* I would change about the app. I would love to be able to edit the preconfigured list of 'tags', either to just hide the ones I'll never use, or preferably to allow me to customise the text myself. The options they have are decent enough, customisation would be perfect - I gather this is on the 'wish list' for future versions. There seems to be a slight glitch with data export for Excel in that dates are coming through as text rather than an Excel-friendly timestamp. This has almost no relevance to any other user I'm sure, but it makes some of my occasional attempts at analysis/graphing in Excel go a bit wonky. I'm going to drop them a line about that, and it's just the sort of thing they fix in one of their version updates. (Edit: as expected, this has now been fixed!)

So I quite like it then?
I noticed something a few weeks ago that really surprised me. The way mySugr helps me keep track of my readings actually helps me improve them in a way no other app has done before. There is a sort of 'sliding scale' of reward and motivation going on that on one level just lets me know if things are slipping a little, but then - even when they are pretty much perfect manages to encourage me to keep trying harder. That's not a bad effort for some lines of code, comedy noises and a sprinkling of funky graphics. In general terms the BG average and SD over 24 hours 7 days, 14 days or month-so-far offer me a ready reckoner of how well (or badly!) any time period is going. I have a tendency to think 'things have been terrible for ages' so it can be encouraging to look back a few days and see that results were not so bad after all and a little basal testing will probably fix things.

Aiming for amber
For about a quarter of this year things were not going well for me diabetes-wise. Looking back it wasn't a disaster (see previous para) but every month I'd hope for a better average, lower SD, fewer highs and fewer hypos only to find that the results would be slightly worse not better than the previous month's. Despite the fact that I felt like I was trying harder. This is not particularly encouraging... But following my annual Pump Clinic at the end of June where I made some small basal and ratio tweaks things all seemed to slot into place. Day after day with bewilderingly good levels. I felt like I was winning. Even when we were away on holiday (a notoriously chaotic experience for my BG in previous years) I pushed to maintain this success*. Why? Well during this period I began to notice the 'high/low' marker on mySugr's home screen (see the big picture above) was no longer it's customary Red. Quite often it was Amber. Once or twice it was even Green! So in a rolling 7-day period I would find myself pushing to avoid a high or low reading that day, because if I could make it with a 'no hitter' then tomorrow the wobbles from this time last week would disappear and I'd be in amber again. I was playing my diabetes like a game.

The fact that my logging app was providing that motivation should make the folks at mySugr very pleased indeed.

mySugr is available for iOS devices in the App store and an Android version is currently in 'beta test'.

Final score: 5/5

* Fear not. Normality is resuming this week... along with some set failures and hilariously jaggedy mySugr graphs that well and truly revoke my #teamsmug membership.

Disclosure: I wasn't paid to write this review and I have no commercial interest in mySugr at all. I was lucky enough to be one of the beta-testing volunteers for 2.0 and have spoken to Frederik a couple of times but that's it.