Hybrid Closed Loop Insulin Pumps (Artificial Pancreas) - The Basics

Hello!

It's been a while eh?!

Sorry about that. Truth be told, it's all got rather busy for me, and actually since my last post in my early months on the Tandem tSlim x2, my diabetes has mercifully faded into the background a little, and while still very annoying, hasn't really given me all that much to write about.

But this week has seen the release of something really quite exciting, that I hadn't even realised was happening. It seems those smart cookies at NICE have been munching the clinical trial data and developing a Technology Appraisal for Hybrid Closed Loop insulin pumps (which is the latest bit of tech to be enthusiastically called 'the artificial pancreas', none of which so far are much like having an actual artificial pancreas, but I digress...).

NICE TA10845 is now out for consultation so that stakeholders can review it and make suggestions or ask some pointy questions before publication. It's the same process that the 2015 NICE Guidelines for Adults with T1 which I worked on went through. But what's potentially exciting about a Technology Appraisal, is that while NICE Guidelines are just that - an indication of what the evidence shows to be the better approaches - TAs potentially have more clout, and if the clinician decides that the TA recommends a treatment option for a particular person the funding has to be provided. If the draft is published in its current form it has the potential to open the door to the previously hen's teeth elusive pump-and-CGM combination to around 25% of people living with type 1 diabetes in the UK.

Of course some of these people may have little knowledge of this combination of technologies which has been around for a while, but access to which (certainly with funded CGM) has been notoriously difficult to obtain. And there's quite a bit to get your head around, because it's a combination of several different bits of diabetes kit all working together, but not completely automatically. For all the claims of 'artificial pancreas', there are still quite a few things that you need to do to as the wearer.

From my own experience, having some of my diabetes kit actively helping me out, and looking out for me has been a huge help and a massive leap forward. A hybrid closed loop can't do everything, but it really helps me smooth off the edges of my blood glucose guesswork. It gives me much more confidence, and my results have never been better. I'd find it very difficult to go back, even if (as seems likely from the draft criteria) I still need to self-fund my CGM sensors.

A year or two ago Diabetes UK were putting together an introduction to Hybrid Closed Loops, for which I recorded a bit of video. However in the end it was far too waffly for Diabetes UK to use, so they interviewed me for a few comments instead. But this recent announcement has seemed like the perfect opportunity to inflict it on the world. Sorry about that.

So here is a basic overview of what a Hybrid Closed Loop insulin pump is, how it works, and what it's actually like to live with.

Watch this a little larger on my YouTube channel.

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.

Plus ça change

DUK Towers E1, tomorrow.

I shouldn't be writing this.

It's too late. I've been to the pub and had a couple of beers (as my Libre trace would gleefully tell you). I've just poured a rather tasty Japanese whisky.

By rights there are at least 3 blog posts that have been patiently waiting in line for me to finally get around to writing and posting them.

But tomorrow.

Tomorrow.

Tomorrow is the start of a new chapter.

Jane always liked new chapters.

Tomorrow I will be up early to breakfast, to walk the dog, and then potter to the train station to travel to a meeting at Diabetes UK's HQ in East London where I will begin a new part time digital peer support role with the UK's second favourite national diabetes charity.

I've been a volunteer moderator on the Diabetes UK sponsored forum for almost a decade, but this will be a change for me, and the first time I've been employed by anyone except me for more than 15 years. I am really looking forward to the challenge and to growing, encouraging and nurturing the peer-support interactions which I know from my own experience are SO vital, in a thriving community, over the coming years.

2020 has always felt like quite a momentous year. Perhaps because of the position in life in which I find myself. Perhaps simply because of the neatness of the numbers.

It will be very interesting to see where we are at the end of it.

Fight For Flash in Bristol - Diabetes UK

The last remaining island of 'NO!' in the South West

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

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

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

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

Dividing into small groups to brainstorm.

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

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

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

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

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

Watch this space.

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.

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.

#135shoes - 108 unnecessary amputations a week

Diabetes UK have been working on their 'Putting Feet First' campaign for some time now, but today is the day they are really trying to hit hard with it. They are staging an event in Westminster featuring 135 shoes scattered across a lawn, each bearing a note of the impact that amputation, or living with the threat of amputation can bring. The statistic is horrifying, but even more gut-wrenching is the byline. Eighty percent of these amputations could have been prevented. Eighty percent. It strikes a particular chord with me as I am aware that Bristol, where I live, has a particularly high rate of amputations compared to the national average.

Having lived with diabetes for over 25 years I have spent quite a lot of time trying not to think about complications, but if you are lucky enough to still have all ten toes attached, just think for a moment about the impact on your every day life of losing one or both of your feet. Of the additional challenges that would come with a million every day moments. Stairs, nipping to the shops, running for the bus, running for pleasure, sports, shoes, paddling in the ocean, walking the dog... And for 108 of those 135 people, this devastating event might have been prevented.

Many of the people who live very real and very human lives behind this cold, hard statistic will be living with Type 2 Diabetes. They will be used to having people assume that this is all their own fault. That they should be ashamed of themselves. That they have only themselves to blame. Because type 2 is a 'lifestyle' disease, right? "Too many cakes and not enough exercise you poor, waddling excuse for a human being". Blah blah blah. So on top of the physical trauma and day to day difficulties faced, they will be heaped upon with guilt for the enormous cost of their treatment to the tax payer. What remains of their self esteem crushed beneath the weight of media, public and family opinion and in some cases even a medical profession that seems to overtly judge them as failures.

But is it really as simple as that? And even if you think it is, what fruit does that mindset bear?

Personally I don't believe that it is. There is a lot in this article, You did NOT eat your way to type 2 diabetes, that makes a lot of sense to me. Now that's not to say that I dismiss the concept of personal responsibility entirely. Of course not. If some people had made changes perhaps they could have dodged their diabetes diagnosis. But it just seems to me that many (most?) people who live with Type 2 diabetes were doing pretty much what everyone else was doing, it was just that their metabolisms weren't up to dealing with the semi-toxic combination of a modern Western diet and a massively wealthy and profit-hungry food industry.

But getting a diagnosis of diabetes (of either type!) surely should not inevitably lead to 135 people each week undergoing expensive life-altering surgery. Our understanding of managing long term conditions, like diabetes, seems to be improving year on year, and yet many of the outcome measures seem to be  getting steadily worse.

How can we change the balance so that there are only 81 shoes on the lawn?

Here are a few thoughts from my unqualified, unmedical viewpoint:

1. Get your feet checked every year
   This is for us lot with diabetes really. Foot checks are supposed to be part of your annual review every year. Go to your appointment and make sure you get your pulses and sensitivity checked. If there are any problems you want them spotted early.
   
2. Stop telling people that diabetes is inevitably progressive
   This is less a factor for us living with Type 1, but many with Type 2 are set up to fail from the outset - if something is inevitable, why bother putting in effort to prevent it? Effective managment of diabetes is a relentless slog, we need to be encouraged that the effort is worth it. Don't blame people if they need more or different medication as time goes on, but never make them feel like it is not worth trying, that there is nothing they can do. Focus more on the positive benefits of effective management in the short and long term.
3. Stop telling people that type 2 is 'mild'
   Incredibly this still seems to be suggested to some people. That type 2 is not really very serious and doesn't need much attention paid to it. I much prefer the quote about diabetes and tigers: "Living with diabetes is like living with a tiger. If you feed it, groom it, never turn your back on it; you can live with a tiger. If you neglect it; it'll pounce on you and rip you to shreds."
4. Start telling people to watch their carbs
   Diabetes is a long term condition. People were diagnosed with it years ago, and told the information that was felt appropriate then. Some years ago people diagnosed with type 2 diabetes often significantly increased their 'starchy carb' intake on the advice of their healthcare professionals. Almost all sources now seem to acknowledge that moderating carbohydrate intake - and not just sugar, ALL carbohydrate - is beneficial for people with diabetes. Now I'm not going to open the low-carb can of worms here, because what I am talking about is really more to do with better BG outcomes than any arbitrary label you might place on a number of grams of carb a day that you might feel works for you. Which leads me nicely on to...
5. Allow motivated patients to check their Blood Glucose
   The vast majority of people living with diabetes in the UK have type 2. And the vast majority of them are told, time and time again, that they do not need to test their blood glucose levels. That the 6-monthly HbA1c test is enough. I could write a long and ranty post about how we seem to have got ourselves into this mess (including the Farmer et al study that is still used as an official reason why SMBG - self monitoring of blood glucose - for type 2 is not recommended) but I would rather talk about the motivated people I see on diabetes forums. They fund their own strips because their surgery won't. They test before and an hour or two after eating something (whenever they generally get their highest reading). They look at the results and the quantities and types of foods eaten and make adjustments. They use the very pre- and post-meal target values that are in the same NICE guideline that denys them access to SMBG. And as a result? They are able to actively tailor their diet to suit their own diabetes, many are able to reduce or emilinate medication and their HbA1cs usually fall well outside of the 'danger zone'. And if they can do it... so can hundreds and thousands more if given the right testing framework, simple guidance and 6 month's or a year's worth of strips for that intensive early testing.

Well done to Diabetes UK for highlighting this important topic. I hope some action can be taken to reduce the enormous, unnecessary, financial and personal cost behind these statistics.

Release your inner diabetes Hobbit - Guest post for Diabetes UK

My diabetes, yesterday.

Last weekend we finally got around to watching the last part of Peter Jackson's mammoth 'Hobbit' trilogy "The Hobbit: Battle, battle and a bit more battle" on one of those newfangled instant video services (pauses to wistfully remember trawling the aisles of tiny, ramshackle video rental shops all those decades ago). During one of the epic-wide-shot-sweeps across the thundering conflict there emerge, through dust and fracturing hillsides, several enormous, lumbering cave trolls - staggering about, squashing people and generally getting in the way.

They reminded me more than a little of my diabetes.

Except that my diabetes doesn't often wear a little wooden backpack-style platform of Orcs throwing rocks. Although some days...

I think it was the thick-headed stagger of them that made me draw the comparison. The turgid movement. The stupidity and utter disregard for anyone or anything around them. Yup, my diabetes can be all of those things. Slow, stubborn and very hard to work around.

The heroes of the film, by contrast, are tiny, fleet of foot and scamper around very nimbly. Dancing and chasing in and out, between legs and around corners, while the grunting Diabetes Troll laboriously lifts its impossibly-heavy hammer for another ill-aimed swipe.

But there is obvious peril here. Running rings around the hapless troll is all very well, but unless you keep your wits about you, and ideally keep your distance from the 'complications' hammer sooner or later you run the risk of getting squashed.

Mercifully, diabetes complications are pretty slow moving for the most part. And an occasional out-of-range reading here or there does not necessarily mean that our kidneys pack up immediately or our eyes are instantly fried [Good job too looking at my BG results this week!]. But there is a danger in that. It is all too easy to become a little complacent. Doing something now that (you hope) will reduce the chances of *something* not happening 5, 10 or 20 years from now is not a brilliant action-reward feedback loop. What someone once described as, "We work hard so that nothing happens... We hope that all of that "something" we do leads to nothing - Nothing is a pretty lousy reward".

All that effort and nothing to show for it. Are we doing enough? Do we need to do more? And we can't rely on our feelings to measure these things. There are no pain-measuring nerve endings in many of the places that our Diabetes Troll might be taking a swing at. And the swing itself might be so slow as to be almost unnoticeable until it's right there upon you.

And that is why the 15 Healthcare Essentials recommended by Diabetes UK are SO important. The first 9 or 10 represent really important annual checks which allow you to keep an eye on your Diabetes Troll. And if you discover that you are straying a little too close for comfort, having these checks done every year allows you to take action early to reduce your risk of getting squished. Between 10 and 15 there are really important parts of your care package which will allow you to improve your hammer-dodging skills, brush up on your swordplay and make sure your mind, as well as your body are ready for the fight.

15 Healthcare Essentials Checklist

1. Get your HbA1c measured at least once a year
2. Have your blood pressure measured and recorded at least once a year
3. Have your blood fats (such as cholesterol) measured every year
4. Have your eyes screened for signs of retinopathy every year
5. Have your feet checked every year
6. Have your kidney function monitored annually, including having your urine tested for protein
7. Have your weight checked
8. Get support if you are a smoker
9. Receive care planning to meet your individual needs
10. Attend an education course to help you understand and manage your diabetes
11. Receive care from a specialist paediatric team if you are a child or young person
12. Receive high quality care if admitted to hospital
13. Get information and specialist care if you are planning to have a baby
14. See specialist diabetes healthcare professionals to help you manage your diabetes
15. Get emotional and psychological support

Around 80% of the budget spent on treating diabetes in the UK goes on sorting out complications. Just think about that for a moment. 80p out of every pound. All the cost of medications, test strips and fancy diabetes gadgetry are utterly Hobbit-like when set against the monstrous scale of the cost of helping those for whom things have not worked out so well.

The vast majority (around 90%) of people living with either type 1 or type 2 diabetes have never been offered or have never attended a structured education course which could give them the skills to live better with diabetes every day.

Way less than half of the people living with Type 1 in the UK are getting the checks that they should every year. The actual figure, according to the National Diabetes Audit is just over 40%.

People are not finding out early enough that their eyes, kidneys or nerves are starting to show a little wear and tear. It is never too late to make improvements to your own diabetes management, or get the right treatment and support. Many, many people have used information from their 15 Essential Healthcare Checks to dodge the hammer-blow and nimbly dart out of reach of the troll's swing. Early warnings are just that. Improve your diabetes management and in many cases those early signs can be stopped in their tracks - sometimes they can disappear altogether.

If you live with diabetes, or know someone who does - make sure you read that list and make those appointments. Being told, 'It's all looking fine' does not make these visits a complete waste of time. It's an important annual opportunity to make sure you are staying one step ahead of the trolls.

See also: 15 checks, diabetes audits and prawns

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.

15 Checks, Diabetes Audits and Prawns

Last week saw the publication of the National Diabetes Audit (NDA) for 2012-2013. It's a bit like Ofsted for diabetes clinics and includes results for just over 70% of the places providing care for people with Type 1 and Type 2 diabetes in England and Wales. If you want to dig into the vast and weighty documents yourself, they are published online here: www.hscic.gov.uk/nda.

I got as far as skimming Report 1 'Care Processes and Treatment Targets' (check out that horrendous BG testing technique on the cover folks... right into the nerve-ending-packed softness of the fingertip! Use the sides people use the sides) before one of the stats just jumped out and hit me between the eyes.

Way less than half of all Type 1s are getting the routine healthcare checks they should.

40%. Forty. Percent.

My daughter reliably informs me that in GCSE terms that comes out as an 'E'.

The actual figure is quoted as 41.3% and it has been falling since 2010. That's almost a quarter of a million people living with type 1 diabetes who are missing even the most basic annual checks to help them keep on track.

When it comes to actively supporting people to manage their condition effectively by offering them some sort of structured education course the stats are even more eyewatering. Less that 4% of people being offered a place on a course. A measly 1% actually make it onto the courses. There's a lengthy rant right there... but that will have to wait for another day.

Diabetes UK lists 15 healthcare essentials that people with diabetes should get each year:

1. Get your HbA1c measured at least once a year
2. Have your blood pressure measured and recorded at least once a year
3. Have your blood fats (such as cholesterol) measured every year
4. Have your eyes screened for signs of retinopathy every year*
5. Have your feet checked
6. Have your kidney function monitored annually
7. Have your urine tested for protein each year
8. Have your weight checked
9. Get support if you are a smoker
10. Receive care planning to meet your individual needs
11. Attend an education course to help you understand and manage your diabetes
12. Receive care from a specialist paediatric team if you are a child or young person
13. Receive high quality care if admitted to hospital
14. Get information and specialist care if you are planning to have a baby
15. See specialist diabetes healthcare professionals to help you manage your diabetes
16. Get emotional and psychological support

* eye screening is now handled separately and bizarrely is no longer included in the NDA

The ones in bold are the checks that are covered by the NDA. Eight or nine routine measures to check that nothing nasty is lurking, and to be able to do something about it if things are going awry. These checks are not about passing or failing - they are about protecting us.

So what is going on?
Is it just people not showing up?
Is it that the appointments are not available at convenient times?
Is it that people simply do not *know* that these simple routine checks are so very important?
Is it a lack of resources?
Overstretched NHS?
Un-engaged individuals?
Are clinics not helping patients?
Or are patients not helping themselves?

My guess is that it is *all* of those things.

I wrote once before about the exponential rise in the number of appointments that were involved in my 'annual review' and the situation is much the same. Decentralised care may work well as a buzz word, but patients have ended up with 4 or 5 appointments instead of 1, which makes the whole process much more of a faff.

But here's the harsh truth.

Faff or not - if you are living with type 1 diabetes you need to do whatever you can to make sure that you get those checks.

They are not for the benefit of the doctors. They are not for the purposes of making someone's spreadsheet look snazzier. They are for YOU. We live in a world where people struggle to get access to any insulin at all - let alone the particular type and/or colour of pen that they prefer. The very least we can do is turn up for (free!) appointments designed to help us to make it through life with our feet on and our eyes working.

It absolutely appalls me that the figures are what they are. And the people most likely to suffer as a result are not the clinics or doctors, but the very people who are not getting checked.

Yes I'm sure some clinics could help with more flexible appointment times. Some employers might need to be reminded that under the DDA (or whatever it is called this week) they need to make 'reasonable adjustments' to support employees with diabetes in keeping these kind of routine healthcare appointments.

But at the end of the day we have to find ways of attending.

Prawns
Perhaps it would be easier if diabetes was a bit more like prawns.

After 25-odd years I am very glad that diabetes is often a relatively slow-moving adversary. But perhaps part of the problem with all those thousands of appointments from the patient perspective is that diabetes is not enough like prawns.

Perhaps it's not prawns for you. Maybe it's peanuts. Or yoghurt. Or fresh ravioli with ricotta.

When I was in my teens I had an absolutely delicious pub meal out while on holiday. I chose a local speciality of prawns in their shells. They were fabulous. On the way home in the car I began to feel a little uneasy. I used to suffer a little with motion-sickness so put it down to that. I still felt a bit odd and over-full at bedtime. But then... we had eaten rather a lot. I woke with a start in the early hours and knew instantly that things were not right. Not right at all. Somehow I managed to stumble, in the dark, with excruciating urgency to the tiny the bathroom where I remained until the following morning in a wretched, heaving heap.

I still struggle to look at a prawn.

The trouble is there is no such immediate come-back for a missed appointment here or there. Eating a big ole serving of 'not enough time at the moment' prawns in 'missed appointment' sauce doesn't bring me out in a sweat just thinking about it. But the results of missing those checks are potentially even more catastrophic.

80% of the NHS budget that is spent on diabetes goes on treating complications. We owe it to ourselves to do what we can to change that statistic. To beat diabetes one day at a time. To keep ourselves well.

Making sure we get all our routine healthcare checks is a tiny step in the right direction.