Hot and Cold

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

Lanyards, obviously. 

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

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

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

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

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

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

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

But...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’d love to hear your thoughts.

Feeling lucky at the Houses of Parliament.

Abbott's Jared Watkin, Robert Courts MP for Witney,
Lord O'Shaughnessy and some scruffbag on the end.

A week ago today I had the unexpected honour of being invited to the Houses of Parliament to a Parliamentary Reception on 'Innovation in Diabetes Care' hosted by Robert Courts, MP for Witney. Not your usual Tuesday.

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

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

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

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

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

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

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

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

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

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

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

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

T1DCC at the Diabetes UK Professional Conference 2018

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

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

*whichever irritates you the least

The ABCD is the Association of British Clinical Diabetologists, and their T1DCC is the Type 1 Clinical Collaborative, which was being officially launched at a presentation on Wednesday afternoon. You can find out more about the collaborative here but essentially it is an initiative that seeks to support and improve care in type 1 diabetes, sharing best practice, guidance and support for healthcare professionals working in the UK. The T1DCC seeks to support improvement across 6 areas:

• Pumps and technologies
• Health care professional education, training and workforce issues
• Patient education
• Whole of life
• Enabling success
• Quality improvement

and along with two other pancreatically challenged types I am looking forward to chipping-in to the discussions and conversations as they arise.

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

If your name's not on the list, you're not coming in

As is customary with the Diabetes UK Professional Conference there was a good deal of difficulty with being allowed in as a mere person with diabetes (which is always put down to some obscure rule about pharma being explicitly forbidden to advertise directly to members of the public, which tickled me as I saw this pharmaceutical advert on the way to the conference). However the PWD reps were allowed to attend as we were listed as 'speakers' at the presentation, so I was able to arrive a little early and managed to get to see some excellent sessions.

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

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

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

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

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

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

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

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

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

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

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

Guardian Connect in Amsterdam and #TADtalk2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

Watch my weekend fly by


See more video noodlings on my Youtube thinghy.

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

Nothing like as '2016' as it seemed

Parliament (or possibly Hogwarts?) - one of a number
of inexplicable invitations in 2016

When I was imagining writing this post, the inevitable looking back over the last 12 months, I thought it would start 'last December' but as is the way of things these days, I have missed that particuar deadline and now I have to start with the significantly more cumbersome 'in December 2015', or possibly 'a little over 12 months ago'. It's a good job you are not here for the quality of the writing - or the frequency of postings for that matter. Whatever the reason for your stumbling across these witterings I'd like to say a massive THANK YOU for reading, commenting and all the encouragement you offer though FaceTwit and all those other new-fangled Social Medias. Genuinely, sincerely - thank you.

2016 was, by many people's reckoning, a bit of a git of a year. There were some things that happened that many people would have preferred had not, choices were made that left some people feeling distinctly 'Huh?!' or occasionally 'Oh NOOOOOOOOOO!!!!' and death seemed to be stalking around picking off an extraordinarily large number of beautiful, creative and talented people to such an extent that it is really hard to remember more than a few of them without feeling slightly overwhelmed. Humanity's ability to be generally awful to each other seemed to be conspicuously in evidence and even the weather and the stability of the earth's crust itself appeared to want to get in on the act.

And yet, when I look back over things closer to home, I realise that we as a family had a pretty great year while all of that was going on. Our eldest left to study away from home, found some great housemates and is having a wonderfully creative time. Our yougest embarked on a new adventure, effectively the next stage of their life, and is exhibiting extraordinary maturity and creativity. And we added a new hairy member to our househood who ensures, as has been remarked upon, that at least once every single day, each of us breaks into a massive grin and/or hysterical laughter.

Early last December (except-that-technically-it-wasn't-because-December-finished-yesterday-so-I-missed-it-by-one-day-but-anyway-you-know-what-I-mean-because-December-2015-sounds-too-long-ago) I took up an invitation to speak at the Royal College of Physicians in Edinburgh. This was the first time I had been asked to speak to healthcare professionals and share my 'grass roots' experience of living with type 1 diabetes, and it was as rewarding as it was utterly terrifying. In January I was invited to talk about what it had been like contributing as a lay member of the Guideline Development Group for the updated NICE guidelines for type 1 diabetes in adults at Partha Kar's #talkT1 event which later gave rise to t1resources.uk. In March I received sponsorship to attend the Diabetes UK Professional Conference where I spoke about my experiene of using the Freestyle Libre glucose monitoring system and a few days later was invited by the wonderful May Ng's to speak at the Children and Young People's North West Network Education Day in Leigh. June saw me invited by Abbott to join bloggers from across Europe at DxStockholm for a hugely inspiring weekend. More invitations followed to present to parents or children with diabetes at the CYP East Midlands Network Day and to healthcare professionals at the Yorkshire and Humber CYP Diabetes Network. In the meantime a funding application was granted for a clinical trial of a new intervention to tackle problematic hypoglycaemia for which I have been asked to assist with patient involvement (much more on that later). Along with some really interesting and useful meetings as part of the Medtronic 'Bloggers and Advocates' group I was also invited to share my experiences of hypoglycaemia as part of their excellent Hypo Heroes campaign for World Diabetes Day 2016. There was also an entirely unexpected invite to a meal at the Houses of Parliament, but to be honest I have a suspicion I may have dreamed that one. I mean... what would I be doing at the Houses of Pariament?!

The growth and launch of T1resources.uk from an embyronic 'wouldn't this be a good thing' idea to actually seeing the site filling out and gaining traffic has been a particular joy of 2016 - and seems to be one that will continue to grow in value and presence during the next 12 months.

Diabetes-wise 2016 has not been without its struggles for me. While all those 'peaks' and moments of excitement were going on, sometimes it felt like I was living in a very deep and shadowy chasm, perhaps largely of my own making. But more recently (and particularly following my most recent Pump Clinic appointment where some of you wisely advised me to opt for 'painful honesty' with my team) I have felt more myself about my T1. While it is still intensely irritating at times, I feel considerably more on top of things than I have for a good long while. And improvements in BG levels? Well those too may come in time.

Looking forward it is hard to know quite what to expect from 2017.

I have made one small, but potentially quite significant decision though. For the last two years I have occasionally used Abbott's Freestyle Libre to either see me through particularly chaotic periods of blood glucose (Christmas, birthday, summer holiday... that sort of thing), or to act as an opportunity for a reset when things have drifted somewhat. All of the extra data make it slightly easier for me to separate wood from trees and to tweak basal profiles and/or meal and correction ratios.

For 2017 however, while I may still occasionally use the Libre I have decided divert some family funds and to finally invest in the transmitter and charger to allow me to occasionally use CGM with my MM640G. If I can manage to stretch sensor-life to 10 or 12 days then the ongoing sensor costs are not dissimilar to Libre and, of course, come with the added benefit of SmartGuard, which worked so well for me before. I will only know whether this level of occasional use will be of any benefit to me if I try it (research data shows that better outcomes come for those who can use for 70% of the time - which is sadly significantly outside our funding ability). The cost of the transmitter is an eye-watering £500 and it is only warrantied for 12 months' use. Nevertheless the system was so effective for me when I used it before that I am keen to see if I can replicate some of the same effect with an odd sensor every so often. And, of course, whether the CGM data will allow the same 'reset' opportunity that I currently gain from a fortnight of Libre wear every month or two. My hope is that the transmitter will continue to function beyond the 12 month warranty if I treat it gently and talk to it soothingly every so often.

Time, and subsequent blog posts here, will tell.

T1 Resources - a long overdue blog post

As is almost inevitable at this time of year I've been finding myself reflecting over the last 12 months in recent days.

I'm hoping to post something as a bit of a 'look back - look forward' in the next day or two, but wanted to give this long-delayed post about T1 Resources some room of its own.

T1resources.uk is a website that acts as a gateway to rated, reviewed and reliable online resources and peer support that can help people self manage their type 1 diabetes.

Some of you may already have stumbled across what I had been describing earlier in the year as 'Project Enormous' but for those that haven't it was an idea that grew out of a conversation that a few people had at 'Talk T1' an event that Partha Kar put together in Southampton in January last year to explore new models of care for type 1 diabetes.

The idea particularly resonated with me and it was something that I wanted to be part of because it was something that Dave Sowerby and I had discussed many times before. We have both been living with type 1 diabetes for many years (he since childhood, me since my early 20s) and we found each other during the early rapid growth of what gradually became #GBdoc. Without wanting to speak for Dave, I think it's fair to say that we both had a very positive experience of meeting other people online after years of relative isolation. The sharing of experiences, insight, suggestions, the understanding of the common struggles and frustrations, along with pitch black humour had a profound affect on me. Time and time again I would say, or hear someone else say, that they learned more online in 6 months than they had in the previous 10 years at clinics. Or that they *finally* felt they had people around them who understood what they were going through, based on lived experience rather than textbook theory.

But the question always remained - how could those positive effects be spread to a wider group? As a proportion of the 400,000 or so people living with type 1 in the UK, those connecting with each other online was clearly a miniscule fraction. And part of the nature of these blossoming interactive communities is that they can at once look impenetrably complex and full of well established groups and relationships. Finding a way in can look a bit daunting - even if you know there is something there to be found.

Add to this the complexity that some stuff on the internet is really useful, helpful and good, while other stuff is, not to put too fine a point on it, utter nonsense, and the challenge becomes greater. Particularly when you hear people expressing the wish that this stuff should be available on prescription, or at the very least be suggested to those newly diagnosed by their clinic or doctor.

But how could a doctor recommend something so intangible? What if the stuff people first happened upon was hopelessly inaccurate, dangerous or just dreadfully waffly. Perish the thought - someone might stumble upon these ramblings - surely all hope would be lost!

Wouldn't it be good if there was a place where you could find the 'good stuff'. And know that it had been checked by both doctors and 'real' people with T1.

And so, some of us living with type 1 diabetes who were connected to the diabetes online community, and some visionary healthcare professionals who could see the positive impact that peer support and social media interaction might have as part of a person's diabetes toolkit got together and made it.

What is T1resources.uk?

Put simply it's a starting point. A way in. A collection of blog posts, YouTube videos, websites and all manner of other content that have been reviewed by both a person living with type 1 diabetes and a qualified HCP. These are categorised and classified to make them easy to find and should give you a decent starting point if you are looking for information about any aspect of living with type 1 diabetes. And because everyone is different and wants different things, you can filter to only see stuff in particular formats (eg blog posts or videos), or that comes from particular sources (NHS, JDRF, DUK etc). If you know of something really helpful that is not listed you can suggest it. If you think something on the site is particularly useful you can rate it (or leave a comment) so that others who visit can see what people are finding helpful. For those who are venturing into Social Media for the first time there are brief details of what each channel offers and what to expect, along with advice about staying safe when looking for healthcare information online.

The site soft-launched in September and continues to grow and develop. It is great to see more people creating accounts and expressing opinions by rating and recommending resources. I had always hoped that there would be some community involvement as part of it. Best of all the reception among healthcare professionals has been amazing. I have been fortunate enough to be invited to speak at a couple of events during the year (more on those later) and whenever I have mentioned T1resources.uk it has been warmly welcomed with people asking for cards and details to pass on to people in their clinics.

I am hoping that the site continues to help people over the coming years.

Huge thanks to Sophie Harris, Pratik Choudhary, Kev Winchcombe, Laura (Ninjabetic) Cleverly and of course Partha Kar for their help and support and without whom this project could absolutely not have happened. Would be great to hear what you all think of it.

Visit: www.t1resources.uk

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day two

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

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

Hypoglycaemia

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

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

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

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

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

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

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

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

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

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

#talkt1 - Brainstorming a new model of care for T1 diabetes

Bright and early on Saturday morning I caught the train to sunny Southampton where I had been invited to attend '#talkt1', and event organised by everyone's second-favourite rabble-rousing diabetologist and all-round live wire Partha Kar. It was a real honour to have been invited and the attendees to the event were an extraordinary who's who of passionate, committed T1 specialists, consultants and paediatrics, commissioners, DSNs, plus various NHS big-wigs such as Jonathan Valabhji and Diabetes UK's CEO, Chris Askew.

The majority of the party had gathered the evening before, for some presentations, talk of Vanguards and 5 year forward and time to think and talk together. This was not some back-slapping jolly though. These amazing people had given up their weekends to take a tough look at how type 1 diabetes care is delivered in the UK and to see if they couldn't begin to rethink it. One chilling statistic from Pratik Choudhary's presentation was recounted on Saturday morning:

‘Current practice kills at least 30% more people by the age of 50 than best practice should achieve’

Saturday morning began with some patient stories. Kev Winchcombe gave a moving account of the diagnosis of his daughter, and the huge journey they have been on ever since (yes that's right, I'm using the 'J' word - deal with it). Laura (ninjabetic) spoke of her initial struggles, lack of education (100 units a day and no instruction about balancing that with carbs!) and how connecting with others on Social Media has made such a difference to her self-care. Jens Birkenheim spoke of his frustration with not being able to find the sort of care he needed - or even where to start looking - which led him to begin setting up DCareFinder, a website that allows you to search for diabetes services near where you live. It was then my turn to talk about my experiences as a lay member of the Guideline Development Group for the NICE T1 Guidelines, how I came to be involved and whether I thought they helped me as a patient.

It was interesting to hear the same themes coming out again and again in each of these patient stories. The need for education, right from the start and as an ongoing part of living with T1D. The variety of care experiences in the UK, sometimes exceptional, other times disastrous. The value of using technology, digital-connectivity and peer-interaction as tools in our daily dance with T1.

It was then time for some thoughts from the diabetes 'legends' - Professor Simon Heller and Dr Fiona Campbell who spoke about adult and paediatric care respectively. One quote from Prof Heller particularly stood out to me. He said, "We don't often tell our patients this, but there is no condition which demands more of the individual than type 1 diabetes".

There was a lot of tough talk. A genuine sense that these people felt they could do better - and wanted to make that happen.

In the afternoon the room split into 4 'teams' each given a scenario of a hospital trust/healthcare setting and pot of cash. They were then asked to see what they could come up with (in a matter of just a few hours) as a new model of care for type 1 diabetes. "If we were starting from scratch," Partha said as he introduced the game, "I think we can all be pretty sure that we wouldn't end up where we are". Us patient-types were free to roam around from table to table and stick out oar in. Giving feedback as to whether we liked the ideas being floated. After a break for lunch, there was just enough time to draw the ideas together before they were to be presented to a guest panel of 'judges', including two CCG Commissioners and Roz Davies as a patient representative.

I'm not quite sure what Partha expected to get out of this scrap-of-time-workshop, but there were a number of very interesting ideas floating around as the 4 different models were presented. It was fascinating that no one really based their idea on needing a stack more money. Most of the thoughts were priced loosely within the specified budgets, and it seemed that these may have been thoughts that people had been musing on for some time. I didn't take any notes so can't really recount them in detail, but here are a few things which caught my attention at the time.

• The idea of 'front loading' finances. Implementing additional education and support up-front with the money that you would expect to spend later on acute admissions or complications that can be avoided.
• Identifying people who are stuggling not only by HbA1c and/or admissions, but also on their level of 'diabetes distress'
• The importance of education delivered by people specifically trained in T1D
• The potential of 'community hubs', making it easier for people to access care near where they live, as often as they need it
• The importance of psychological support - as Dr Fiona Campbell put it "Psychologists will never sit idle - so much is discovered by universal screening. You don't know what you don't know"
• The potential of technology - Skype consultations, remote/digital clinics, regular data-upload and review, email and *gasp* seamless sharing of information between GP and hospital clinics
• The huge potential of peer support as part of a new model of care
• A modular education approach - Diabetes seen as a journey through life with various milestones. People have different needs/aspirations and will be ready to access education at different times - the ability to dip in and out of primary and secondary care with varying frequency
• That people are different, and that approaches need to be tailored to better support individuals

It was a really inspiring day. You got the feeling there were some real sparks flying. That if anyone could begin to stir up the current state of T1 care in the UK, then this would be a pretty good starting line-up. It will be interesting to see what comes out of it in the coming months and years. Huge thanks and much respect to Partha Kar for his energy and commitment to improving things for us pancreatically challenged lot.

If you want other perspectives on the day you can also read blogs by Partha, Roz, Laura and Kev.

Disclaimer. Very kindly, my train ticket was paid for and the lovely Kev W gave me a lift to the venue. Lunch was laid on, but all of us patient speakers gave their time for the privilege of being involved in such an amazing day.

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.