Sugar and spice and all things in moderation

*Deep breath*

Sugar Tax.  I don't remember anything that has so divided that diabetes online community.  Sure we all have different views, that's what makes us a community.  Of course we don't all agree - where would the fun be in that?  But the announcement of the Sugar Tax has everyone scrambling for an opinion.

I'll admit a few things from the start.... firstly, I'm pro Sugar Tax (for reasons which I'll explain), and secondly, I'm not sure writing this blog is the best idea I've ever had - experience tells me it could end up with me taking a week off the internet....  It's important to realise that my opinion is no more valid than anyone else's.  I'm not right, but neither am I wrong.  It's just what I 'reckon'.  And who doesn't love a good reckon?

So I'm pro Sugar Tax... light your torches and grab your pitch forks.  Why am I in favour of it?  Incentivisation.  My academic background is in economics (so I'm also generally pro Free Markets too), and I like the theory of how individuals react to incentives.  That theory generally being that when faced with a choice over two 'identical' products, the rational choice is to choose the cheapest one.

Now Coke and Diet Coke aren't quite identical, but they're pretty close.  If one is cheaper than the other - the rational choice is to choose the cheapest one right?  Why pay over the odds for a Coke when Diet Coke is (almost) identical?  Add to that, the differences are that Coke has more sugar (and more calories) then you're almost winning twice.  Changing behaviour is difficult, but people acting rationally, understand the dis-incentive in choosing more expensive Coke, over cheaper Diet Coke - so it should work.

But this is where it gets tricky.  In theory, theory and practice are the same.  In practice, they aren't.

Sugar Tax comes with a whole host of other things to consider.  Is the level of tax going to be big enough to make everyone behave rationally?  Probably not (price elasticity of demand is what you're thinking of there).  Are there socio-economic implications of increasing tax on soft drinks?  Yes of course.  There are loads - too many to even begin to discuss here.

Is Jamie Oliver a bit annoying, and prone to the odd diabetes-related gaffe?  Yes of course.  Isn't it a half measure if it doesn't include sugary milkshakes?    Yeah.   What about my hypo treatment?  Agreed.  There are alternatives, but you need something that works for you.  Thankfully Diabetes UK have our back on that one.   Why not make fruit and veg a load cheaper instead?  Yeah why not?  Completely agree.  Ask a farmer how much he makes off a 20p cucumber...

In my humble opinion (which, remember, counts for no more and no less than yours), I think people hear the announcement of a Sugar Tax and assume it's the only solution being proposed.  I don't think it is, and don't see how it can be.  Affecting the behaviour of a huge number of consumers isn't going to happen overnight, and isn't going to be done by a 7p levy on a can of coke.

I think the majority of people know that being overweight and inactive is bad for you, but they don't change their lifestyle.  Many people also know that smoking is bad for you but people continue to do it.  Though that number continues to fall as tax rises and the number of places you can smoke decreases.  Multiple measures gradually affect behaviour.

We already have a limit on advertising junk food to kids.  Placing sweets near supermarket tills is on its way out.  Evidence shows that indeed in some parts of the world, sugar tax has some effect on changing behaviour.  It won't change the world overnight (not least because you won't see it for two years anyway).

It's easy to be cynical and say it's patronising, pointless, punishing those who are already worse off.  But it's also easy to think that we have a responsibility to ourselves to be healthy, to reduce our risk of cardiovascular disease, strokes and Type 2 diabetes.  And if we don't want to, that's fine, but you'll have to pay a small premium for it.

Anyway - it's just what I reckon...

Cheers.

Glasgow 2016 - some personal highlights

There's more serious stuff to come from #DPC16 - a lot more.  But the conferences (#YDEF16 included) did have a personal side to them as well, and I wanted to get things down on paper before I forget them.

There's a good chance I'll return to this as and when another memory fights its way through the current brain fog, but these are the things that have stood out for me on a personal level over the last four days:

• Meeting members of the #doc.  It's always top of the list when you get to meet people you spend so much time talking to.  Finally getting to meet (in no particular order) Laura, Kelly, Kris, Sandie, Dani, Mike, Ellie, Bob, Helen, Partha, Pratik, Emma, Becky, Ali, Neil, Pete, Sophie, Lis, Jon, Jane, Amy, Hannah, Jane-Claire and anyone else who I've definitely forgotten (sorry - can barely remember my own name right now).  Memories were made - I thank you.

• Getting to speak at both conferences.  I think Kelly and I delivered a solid couple of workshops at #YDEF16 to say we'd only met for the first time the night before (and only had one practice run).  Standing up in the Arena on the first day of the conference and being given a platform to give my experiences on education at #DPC16 was a real highlight and I'm grateful to Bridget from Diabetes UK for allowing me to share the stage

• Watching my friends speak.  I saw Kelly deliver a great speech about her Sugarbuddies experience, and Laura talk so passionately about NICE guidelines, both within a few hours of each other.

• The 5k fun run.  It take a lot to motivate me out for a run before 7am.  But it WAS fun (sorry Ali) and it lead tomy fastest 5k time and the creation of...

• The #DPC16 #DOC T-Shirt... a sixth form leavers present for the Conference Age

• Sanofi Coffee.   The Sanofi stand was the default meeting place for everyone and I think it was a unanimous vote that their coffee was the best (other pharma coffee stands are/were available)

• Seeing people you weren't expecting to.  Basically half of my diabetes team in Sheffield showed up for the conference which is not wholly unexpected, but running into so many of them in such a busy environment was a surprise, but a very welcome one

• Hearing the conclusion of something I'd been a part of.  The very first lecture at #DPC16 gave the results of the clinical trial I took part in for two years.  I'd heard the headline news, but to see the presentation was very interesting (and a little controversial)

• Meeting so many people.  Obviously putting faces to names from the #doc was incredible, but having the chance for a few words with those who'd spoken so passionately or chaired incredible discussions was a great opportunity.

• Being part of something.  I wrote a quick overview of what seemed to be the messages of #DPC16 and I think to have been there and be part of that rising tide of change was a real highlight.  Having the chance to add my voice to the huge buzz that was already there is a highlight, and to be able to share what's going on with everyone was a real privilege

• A couple of quotes.  Nick Oliver said at #YDEF16 "I don't know if any of you have had a hypo, but we tell people with diabetes to eat 15g of carbs and wait 15 minutes.  I dare you to do that".  Partha Kar told a room full of diabetes clinicians "None of you are experts. People with diabetes are the experts. We're all just specialists, at best".  It's reassuring how much they get it.

I think there's more to add to that list, and I'll no doubt return to this in the coming days as my brain settles down.  But for now, that's just a few of so many things that made this week special.

It's not the end, its a new beginning

As we started with a cliched "this is what it's like" post, we end with this "this is how it was" entry.  Except that it isn't the end - at least it better not be.  (I've got a few more blogs up my sleeve for a start).

The last three days of #DPC16 (I'm finding it difficult to stop typing that hashtag - muscle memory at its finest) and the first lead in day of #YDEF16 have been exactly how you'd imagine. Whirlwind, busy, chaotic, tiring and complicated... but also fun, eye opening, insightful, and inspiring.

Pretty much everyone I've spoken to on the last day has asked me the same thing; "How's it been?"  I think my answer's always been the same - incredible.  I probably ran out of proper superlatives at the end of the first day and just settled on that one.

I said at the very start that it's hard to describe the general buzz of the conference and I'm not sure I'm any closer to being able to articulate it now.  I don't suppose that matters too much.  What I think does matter is the messages that come out of the conference.  If you've followed along with any of my tweets, hopefully you've had a sense of both the content of the individual sessions as well as the overarching messages that I think have been present.

If not, I'm going to try and present that a bit more clearly over the next few paragraphs...

I wrote yesterday about how a lot of sessions had references to individual care, some more pointedly than others.  That really feels like the essence of a lot of what I've heard over the last three days.

• Education needs to be individual, as the current offering doesn't suit everyone  
• Targets for people with diabetes need to be individual because what's achievable is different for everyone  
• Type 2 Prevention is potentially individual if we can identify those with specific factors making them more susceptible to the condition
• Transition clinics for younger people with diabetes need to have an individual approach because there are so many individual factors to consider...

People with diabetes aren't numbers.  My diabetes isn't defined by an HbA1c score of 6.6%, cholesterol of 3.2, BMI of 28 any more than the conference is defined by being 3 days long, having 3000 visitors and containing over 100 talks.  You don't get a qualitative understanding by looking at numbers - context is hugely important.

We as people with diabetes know that how our diabetes behaves.  We know that our diabetes is different to other people's.  We know that our care has to be different to other people's because we are all individuals.  The message that care has to be provided on an individual basis came out again and again, and it was very encouraging to see.

There was a clear sense that it's time to stop talking, and start doing.  I think that comes with some caveats though.  "Doing" something isn't always easy - and I think that's where a lot of us feel a sense of frustration, people with diabetes and healthcare professionals alike.   But I think that tide is changing.

I've been fortunate to sit in on some sessions where clinical teams are doing something.  Whether that's redesigning transition services for young people, putting together an integrated care model for repeat DKA admissions, or building a new way of delivering diabetes services for people across an entire CCG.  There are groups of people across the entire UK saying "I know what needs to be done, just let me do it".

Change can be a slow process.  Within an organisation like the NHS it can feel glacial sometimes.  But it's coming - you can sense it.  To me, it feels like there are so many people, doing so much to change care within diabetes that it's going to be difficult to hold it back.  You'll get swept up in it one way or another and have to decide whether you want to ride the wave or drown in it.

So where am I going with all this?  The title of this post alludes to the start of the next chapter for all of us.  The conference has been an incredible experience for me, as I hope it has for every single person there this week.  But what do we do now it's over?  Can we go back to doing what we've been doing?  Was that just three days of information and "oh that's interesting" seminars, or was it actually the start of something?

I walked out of the conference centre this afternoon with a range of emotions.  But the one that I hope to carry forward most of all is that sense of inspiration to do something.  I've been fortunate to meet a HUGE number of people over the last three days, clinical and #doc folk alike.  Every one of them talks about making things better, about changing what isn't working, about doing something... It feels like it's my duty to carry that on outside of the conference walls.

I think if even half the people at the conference leave with that same sense of inspiration and empowerment, the changes we've all longed for in diabetes care will be with us sooner than we all thought.  It's the end of the conference, but it's the start of something new.

Thanks to Diabetes UK for the opportunity to attend the conference, to those who I met, however briefly, to those who stood at lecterns and spoke passionately about what they've already done and what they still strive for, and to those who followed along virtually... thank you.

The future's bright

This one's short - I promise!

I want to start by para-phrasing that (disputed (scroll to the bottom)) Margaret Mead quote...

Never doubt that a small group of thoughtful, committed people with diabetes can change the world.  Indeed it is the only thing that ever will.

OK, it's a bit of a hatchet job on the original, but hopefully the sentiment is pretty clear.   Being at the Diabetes UK Professional Conference this week has reinforced my long held belief that the people actively working in the field (be it consultants, DSNs, researchers, dieticians, GPs or any healthcare professional) want to make a difference to the lives of people with diabetes.

But I've also had the opportunity to look closer to home and spend some time with some people with diabetes, both those speaking out as the small (but increasingly loud) patient voices, and those here blogging with me.  As I'm sure we all know, that peer-power is unquantifiably important and even just a small dose of it can be inspiring.

The end of the second day marked the moment where the patient speakers had done their duty (at least those I know), and we celebrated with a few drinks in the bar at one of the hotels.  What struck me immediately was the passion and enthusiasm that the people round the table spoke about their experiences of diabetes and diabetes care.  It's not surprising given how passionate everyone in the #doc is, but it's so refreshing to hear the words come out of people's mouths instead of reading them on blogs or in tweets.

Looking round the table, it's hard to not have faith.  To believe... to know that things won't be the way they are now forever because there are people out there that want them to be better... that know that have to be better.

I think we expect that from healthcare professionals.  They've chosen this field because they believe they can make a difference, and from what I've seen, they absolutely are working tirelessly to bring about that change.

But to look around a table at eight to fourteen people (depending on exactly when you looked) and hear what they have to say is inspiring.  It makes you want to stop whatever it is you're doing, listen, and go away and do something to make a change.  Then you remember that there are hundreds of people you could put round that table who share that drive, passion and desire to make things better for people with diabetes.

You can't help but know that it will get better, because these people, because you want it to.  I'm proud to know those people and I can't wait to see what they're going to do next.

Taking education to the masses

I’d had my eye on the Education session on Day 1 with equal excitement and trepidation.  The education campaign is one I feel personally connected to.  I felt like the DAFNE course I did has made a huge difference to how I manage my own diabetes, and so hearing a number of professional views on the subject was something I was looking forward to.

Equally, I’d been asked to give a short view of my experiences of education to the assembled professionals, so I was a little nervous about how that was going to go.

If you’ve not had a look at the Diabetes UK Taking Control campaign yet, I’d urge you to start there.  The campaign launched towards the end of last year, and is aimed at making sure everyone is given the chance to learn about their diabetes.  I think we’re at a point now where the evidence for education is no longer in question, we’re now looking at how best to get that education out to as many people.

The session was split down into five talks:

•           Taking Control campaign – Bridget Turner
•           Making the case for diabetes education – Charles Gostling, Helen Hopkinson, Alison White
•           Getting people there – Vivien Coates, Anne Scott
•           Adding options to the education menu – Sarah Newall, Rebecca Owen, Kingshuk Pal
•           Addressing specific local barriers – Tahseen Chowdhury, Seonaid Morrison

Bridget set the scene, explaining why Diabetes UK are championing education and how using an adapted House of Care can be used as a model to deliver education to more people.

Bridget Turner (Director of Policy and Care Improvement at Diabetes UK),
discussing the adapted House of Care model for education

I gave my own (short) view on my personal experience of DAFNE, and why I think education is important.  I won’t dwell on my own personal views too much here, but I generally believe that education helps people become more active in their own healthcare and that in turn helps them achieve better outcomes.  I’ll save that for a separate post outside of the conference.

The stage was set for the other examples from the rest of the speakers.  Charles Gostling started off talking about how they deliver education to people in South London.  He made a great reference to the latest National Diabetes Audit (NDA) data, saying that without clear data, we don’t know where we do things well.  I think that’s a point that can’t be stressed enough.  Without getting side-tracked into a debate on NDA submissions, I think it’s really important to understand your starting position and data is the way you do that.

We know diabetes education referrals are generally low, the take up rates even lower.  Two key messages Charles got across were simple (but important ones).  Firstly, find out why people don’t take up the offer of education.  Secondly, share local success stories.  If someone is doing something well, make sure it’s publicised across your local area so others can learn from it.

Helen Hopkinson then moved onto how the education offering was redesigned, talking through the journey they went on to get to DAFNE (‘because it’s evidence based and we know it works’).  She made a great point that redesigning your education offering can be cost free but when looking at how to do that, you need to engage all your stakeholders.

Why choose DAFNE?

That second aspect sounds so fundamental, that it almost beggars belief that you’d have to say it at all.  It’s a pretty short-sighted approach to try and design something one group of people, that’s paid for by another, provided by a third and ‘marketed’ by a fourth without including them all in the process.  You wouldn’t expect it for iPhones, so why should diabetes education be any different?  It was eye opening in its simplicity.

“Getting People There” looked at reasons why people with diabetes choose not to attend courses (“I learned from other sources”, “more important things to do”, “don’t see the point”).  Some of these struck a chord with me.  I started out with the view that I didn’t need education, but now I’m a big advocate for it.  I think we need to do more to sell the benefits of people who could be persuaded to go if they knew what they’d get from it.  Others need a different model of support – as with everything related to diabetes, one size doesn’t fit all.

As we moved to the discussion on “Adding options to the education menu”, we saw some interesting and innovative ways Lambeth were engaging with different groups within their area.  As with the other parts of the session, there’s some blindingly obvious bits in there too.  If you’ve got an education offering, tell people about it.  Spread the word as much as you can, use community centres, library groups, church meetings – anyone you can – to widen the circle of people who know you have something for them.

One of the most interesting things that came up was the concept of taster sessions.  These are short (90 mins) sessions that act as an introduction to the larger scale education courses on offer.  They’re typically targeted at groups or populations that are historically harder to reach (the example they gave was the Sri Lankan community in Lambeth), or those where Did Not Attend (DNA) rates are higher.   With all the taster sessions, people were ‘followed’ to see how many attended a full course later.  That stood at about 10% for the first year, but it’s hoped to be higher for 2016.

The last bit I’d like to talk about was HeLP Diabetes – an online learning option for people with Type 2 diabetes.  I think it’s important to cover as a lot of people want more online support and if we return to this ground breaking idea of providing what people want, this ticks the boxes.

Around 50% of visitors to the HeLP Diabetes site come outside ‘regular’ working hours, when it’d obviously harder to provide traditional education like DESMOND.  Interestingly, despite some of the upsides to the online delivery (24/7 access, anonymity etc), it still faced some of the more traditional barriers, such as spreading the word about its availability.

I’m a huge advocate of education because I’ve got a deeply personal experience about how it transformed my ability to be in control of my diabetes.  I think the case for things like DAFNE is huge (given its evidence base), and I think that by selling the benefits of the education, we can convince those who have the time, but no inclination, to attend a course and hopefully go on a similar journey to the one I went one.

That said, it’s naïve to think there’s only one way to persist, and if we want to give the benefits of education to as many people as possible, we need to consider how best we offer that education to meet the needs of the many.  “Education is about interaction with others, whether that’s other people with diabetes, healthcare professionals, of your friends and family” – I think many of us who’ve been on a course, or have used social media to help us with our diabetes would agree with that.

The last word should go to Seonaid Morrison from Argyll & Bute on the West Coast of Scotland.  She gave an incredible talk (without slides after a technical problem), on how she crosses a huge geographical area to try and bring education to as many people as possible…

“When you provide education to people, you see the change in them. That's what gets me up and out of bed in a morning”.

DPC16 - Impressions from Day 1

DPC Day 1

This is the standard ‘my first impressions’ blog about attending the Professional Conference.  I appreciate it’s probably a bit cliché, but hopefully it adds context to the rest of what you read about the conference.  Blogs on specific sessions will follow throughout the week (and probably into next week too).

No matter who you talk to, how much past experience you try and take on board, nothing can really prepare you for how BIG the Diabetes UK Professional Conference (DPC) is.

I felt like I’d had the benefit of a gentle lead into the chaos, having spent the day before the DPC at the Young Diabetologist & Endocrinologist Forum, running a couple of workshops with Kelly (@DiabeticQueen1) on what it’s really like to live with an insulin pump (I’ll save that for another time).  I’d had a day to get my bearings for the most part and I’d been through the session planner a week in advance so I had a good idea of what I wanted to see.

But DPC is BIG.  There’s over 3000 people at the conference, many of them great leaders in their fields, others desperate to hear them speak, even if it’s just for a short time.  Typically, there’s six sessions running concurrently with a few coffee breaks sprinkled in throughout the day in the huge exhibition room.  It sounds chaotic but it’s not.  It’s busy, but it’s an incredibly well-oiled machine.

Having hunted down our badges for the week, we piled into the main auditorium for the first round of lectures.  At this point it’s worth explaining how the day is split up – it sounds like overkill (and it’s a bit long to read here), but I think the context is important…

There’s roughly four big time blocks per day, each between 60 and 90 minutes long, each with an overarching theme.  There are six rooms that each run one of those time blocks concurrently.  And each time block contains two or three lectures.  That means in any given day, you’re likely to hear 10-12 individual talks across a variety of topics.  The 2016 Programme is here if you’re more of a visual person.

For the first day, I tried to split between things I had some interest in (it makes it easier to try and understand/write about), and things I felt were of a wider appeal.  Day 1 consisted of 14 individual talks:

Opening Plenary lecture session

•           The Relative Effectiveness of Pumps over MDI and Structured Education (REPOSE) – Simon Heller
•           Peptide Immunotherapy for Type 1 Diabetes – Colin Dayan
•           Exercise for beta cell preservation in Type 1 diabetes: The Exercise for Type One Diabetes (EXTOD) trial – Rob Andrews and Parth Nardendran

Multidisciplinary approaches to managing admissions for DKA session

•           A combined diabetes case manager and mental health approach for supporting people with multiple hyperglycaemic admissions – David Simmons
•           The role of emotional wellbeing in DKA and one care pathway approach – Kirsty MacLennan
•           Walking the tightrope of hyperglycaemia: education is not enough – Clare Shaban

Diabetes education: reaching the masses session

•           Taking Control campaign – Bridget Turner
•           Making the case for diabetes education – Charles Gostling, Helen Hopkinson, Alison White
•           Getting people there – Vivien Coates, Anne Scott
•           Adding options to the education menu – Sarah Newall, Rebecca Owen, Kingshuk Pal
•           Addressing specific local barriers – Tahseen Chowdhury, Seonaid Morrison

What’s new in hypoglycaemia session

•           Cardiovascular effects of hypoglycaemia – Simon Heller
•           Evidence based pathway for the management of problematic hypoglycaemia – Pratik Choudhary
• 
  
• Mary MacKinnon Lecture

•           West Hampshire Community Diabetes Service: re-commissioning community services and beyond – Kate Frayers

Fourteen talks across five broad subjects is a lot of information to take in.  I feel incredibly lucky to be here at the conference (and to have had the opportunity to speak for a few minutes within the Taking Control session) but it takes a lot of brain power to be on the go all the time.  Hopefully those of you following me (@BroomOwl) or the hashtag (#DPC16) on Twitter have got some sense of the huge amount of information being shared.  So back to the day…

The conference centre is big and you often find yourself rushing from one session into another, trying to grab a coffee on the way if you’re lucky enough.  The exhibition hall is where people tend to gravitate between sessions, though I’ll confess I’ve not actually taken a close look at anything there yet.

What really struck me was the mix of passion and knowledge on show, as well as the desire to make overwhelming change to the lives of people with diabetes.  That sounds a bit obvious really, but the sheer number of people devoting their time outside seeing patients to research, service changes and sharing best practice is really incredible.  It’s inspiring as a person with diabetes, I imagine as a healthcare professional it’s very motivating.

I’m writing this in the hotel bar at the end of the first day, reflecting back on what feels like a week’s worth of information I’ve had shoved into my head within the space of eight hours.  I’m trying to pick a favourite session, but it’s genuinely difficult.  I’ll freely admit some of them were very fast paced, and whilst I got the main messages from some, I couldn’t explain the research to you well enough.  Some (like REPOSE which I was a part of), were personally important to me, others, like the whole DKA session gave me something entirely new to think about.

Perhaps the one that struck the biggest chord with me was the education session.  REPOSE had shown in the morning that people using insulin pumps do no better than people on multiple daily injections (MDI) when proper high quality education is given.  The afternoon session showed that there were a huge group of committed individuals across the UK looking to deliver that message out to as many people as possible.  I’ll follow that up in a separate blog.

Thanks for reading my opening post, and thanks if you’re following along on Twitter.  Hopefully you’ll understand that a huge post on each lecture (or even session) is a bit impractical.  I’ll try and do one in detail and summarise some of the others along the way.

Diabetes and Resilience - a child's explanation

As part of the fundraising and awareness work I do for the Sheffield Group of Diabetes UK I asked my daughter's primary school whether they'd be interested in getting all the kids to wear blue and make a donation for World Diabetes Day last month.

Each term the school has a "mindset" which they use to promote positive behaviour to children through a variety of different ways.  This term's mindset is resilience.   So whilst they'd already got Children in Need plans on that Friday, they asked me if I'd like to come in to an assembly and talk about how resilience is important when you have diabetes.

Now over the years, I've become pretty handy at talking about diabetes within my peer group, and especially when talking to other people with diabetes.  But talking to 200 odd children is a different proposition.  Most of the time, I'm using words and phrases like 'bolus', 'carb counting', 'peer support', 'care outcomes', 'HbA1c' and many others.  These are things you say when you've become used to the diabetes lingo that is common place for many of us.  

So how do you talk about diabetes to a large group with no prior understanding, and an age range of 4 to 11...  The answer is probably "I don't know", but that makes for a short blog.  So here's (roughly) what I said - you'll note some scientific license has been applied to a few parts.  That's not ignorance on my part, but a necessary modification for my audience.

Hopefully they found it useful in some way...

I'm going to talk about three things this morning.  Firstly I'm going to tell you a bit about what diabetes is.  Then I'll tell you what I think of when I hear the word 'resilience' and lastly, I'll talk about why resilience is important to diabetes.

So what is diabetes?  Well it's a special kind of illness that you have all the time, but you can't see.  And once you've got it, you have it forever, because there isn't a cure for it.  But it's not something you can catch off another person, so there's no need to worry about that.

When you all have something to eat, your bodies produce something called insulin inside.  That helps all the energy from your food get out of your blood and into your muscles so you can play at lunch time, and do your school work.

If you have Type 1 diabetes like me, then your body doesn't produce any insulin at all and so you have to inject it yourself.  And that's what I have to do.  Normally, you'd give yourself an injection every time you eat something, plus an extra one in the morning, and an extra one before bed.  So you could have to give yourself 5 or 6 injections each day.

You also have to give yourself little blood tests each day.  You get a little drop of blood from your finger and test it with a special machine that tells you if you've had the right amount of insulin.

There's also a different kind of diabetes called Type 2 diabetes.  People with Type 2 diabetes don't have to inject themselves, but usually do have to take a different kind of medicine every day in some little tablets.

When you have diabetes, it's really important to eat healthily.  It's OK to have treats like cake or chocolate sometimes, but it's important to make sure you have lots of fruit and vegetables every day.

Now I'd like to tell you what I think of when I hear the word 'resilience'.  I often think it's about how you cope with change.  Being resilient means that you have to learn to do things differently, keep going and not give up.  It can also mean having to do things when you don't think you can.  And that's why when you have diabetes, being resilient is really important.

When you get diabetes, you have to learn to do things differently.  Before, you might have gone out and have something to eat with your friends.  But when you have diabetes you have to remember to take your insulin with you, and your special machine  you use for your blood tests.  You also have to think more carefully about what you eat and how much insulin you have to inject.

You have to keep going and not give up.  Even if you're finding it difficult to keep injecting yourself, you have to be resilient and keep going.  If you don't inject yourself, you could get very poorly very quickly, and so that mindset of resilience in important.

And you have to do things even when you think you can't.  Sometimes, you don't want to get a drop of blood from your finger because you know it's going to hurt.  But you do it anyway because it's important you do the test to know how much insulin to have.

It isn't always easy having diabetes, but being resilient helps a lot.

A little information can be a dangerous thing

Yesterday CrossFit caused what modern media would call a "Twitter storm".  Other people would call it a disagreement, a difference of opinion or simply a mistake.  Modern media loves hyperbole - me, not so much.

It started with this:

It's reasonable to say that this was certainly offensive to many people.  It's equally fair to say that what it's insinuating (Coca Cola causes diabetes) is also untrue.

I saw this shared a few times on Twitter and did so myself, highlighting to friends how inappropriate it was.  All the responses to that tweet were pointing out why the message was wrong, how insulting it could be and how people personally affected by diabetes had taken offence.

You'd expect CrossFit to realise the error of their ways, apologise and everyone could move on.  What they did instead was post a link to an article about how sugar was linked to diabetes.

At this stage it's worth pointing out a few facts, specifically that there are two types of diabetes.  Type 1 diabetes is an auto-immune condition and the cause isn't clearly known.  It typically presents in younger people but can do so in adults.  Type 2 diabetes is generally (but not always) brought on by being overweight and partaking in limited physical activity.  Gender, age, ethnicity and genetics also play a big part in determining if someone is more likely to get Type 2 diabetes.  

As you'd expect, a few people challenged Cross Fit about their link and as you can probably guess, CrossFit didn't really stop to think about what they were saying or how it was perceived.  Their next tweet said:

That's not true.  You can only have Type 1 diabetes or Type 2 diabetes.  You can't have both.  You can become more resistant to insulin over time if you have Type 1, but that doesn't mean you have Type 2 diabetes.

As you can imagine by now, this cycle of posting inaccurate information, only for it to be challenged by the knowledgeable diabetes online community continued.  One such tweet (since deleted by the CrossFit team) said this:

"and yet our point that diabetics shouldn't be drinking liquid sugar remains perfectly valid"

That's an incredibly dangerous and inaccurate thing to say.  It's also fairly irresponsible when you consider that over 293,000 people follow the CrossFit account (and some who aren't as well informed about diabetes are likely to believe it to be true).

For someone like me who has Type 1 diabetes, actually following that "advice" is potentially life threatening.  If I was having an episode of low blood sugar (hypoglycemia), something like Coca Cola would be absolutely necessary to stop me losing consciousness (and possibly my life).

It's easy to jump on the back of CrossFit (or at least whoever was in charge of their Twitter account yesterday) but I think the problem is more wide ranging than one errant social media account.  

The wider media perception of diabetes is that it's not necessarily all that serious, that everyone who has it does so through their own fault, and that by eating less sugar it's all entirely preventable.  For people living with the condition, it's both insulting and intimidating.  Attaching that level of stigma to a chronic illness is very irresponsible and can lead to people withdrawing, being scared to talk about their condition and not managing it correctly.

There's also some sort of implication that diabetes is fair game for jokes.  You don't see the same sort of things for other conditions like cancer (and rightly so I should add) because it's incredibly serious, life threatening and no-one's fault that they have it.  What people don't realise about diabetes is that all these things can apply equally.

At the start of 2015, Jamie Oliver apologised when being pictured next to a giant coke can with "Diabetes" written on the side in the Coca Cola font, stating that he was actually trying to highlight the lack of water in some American schools, where children were picking up sugar laden soft drinks  as there was no other choice.

As someone with diabetes, I don't expect everyone to know as much about it as I do or to understand how difficult it can be to live with.  Before I got diagnosed, I barely knew anything about it, but equally I didn't claim to know anything about it either.

As a person (diabetes or otherwise), I do expect those in a position to influence others (be it newspapers like the Daily Mail, or CrossFit twitter accounts) to report or comment on something serious after they've properly researched the full facts.  Passing off ill-informed opinions can have serious implications for millions of people and ultimately it's irresponsible to do anything other than be crystal clear with the truth.

The irony is that an active lifestyle is one of the best things you can do to help manage diabetes of either kind, and to help prevent Type 2 diabetes.  CrossFit seemed to be in the perfect position to use the facts to highlight how what they offer can benefit a lot of people.  Instead they chose to try and pull off something smug and fortunately it seemed to backfire.

Overnight (in the UK, during the day across the pond), it continued to rumble on.  There's something quite unsettling about watching an organisation who are clearly in the wrong continue to try and justify and defend their behaviour:

Firstly, as you can see above, "offending the sensitive" is apparently a small price to pay to ill-inform people.  For the record, I personally don't believe drinking excess amounts of anything is particularly good for you, not least Coca Cola.  But I also know that obesity is the link to Type 2 diabetes.  Excessive sugar consumption will most likely lead to obesity, in the same way that excessive consumption of anything calorific will do.  Eating sugar does not directly cause diabetes of any type.   Eating (or drinking) 'treat' foods (those higher in fat and sugar) should be done so in moderation.  Eating fresh fruit, vegetables, lean meat and some carbs is a balanced healthy diet.  But I say again, you can't get diabetes from eating sugar.

Next up, (just cut off at the top - sorry) is a triple whammy.  Firstly stating that any apology would be insincere, followed by a confirmation that making jokes about chronic illness is OK, and finished off, perhaps most staggeringly of all, by a tweet expressing disappointment about the "misinformation about diabetes and the role sugar plays in causing it".

If you've made it this far, the irony that CrossFit are the ones presenting misinformation is probably not lost on you.  Also EATING SUGAR DOESN'T GIVE YOU DIABETES.

CrossFit kept on pulling the trigger stating that if they have to insult "the sensitive" they will.  Well they don't have to insult anyone, 'sensitive' or otherwise.  They could just listen, understand and be more accurate in what they say.  Finally, they return to the scene of an earlier crime, stating that people with Type 1 diabetes can develop Type 2 diabetes.  No they can't.  Type 2 diabetes (as discussed way back at the beginning) essentially means your pancreas produces some insulin, even the tiniest amount.  Type 1 diabetes means your pancreas has no functioning beta cells (that produce insulin).  These two conditions are at odds - you can have one or the other, but not both.

At the time of writing this, I've not seen an actual apology from CrossFit for the way they misrepresented the facts.  They did post a few (subsequently deleted) tweets saying it should have been clear  they were only talking about Type 2 diabetes.  It wasn't clear, and it certainly wouldn't really have been any more accurate anyway.

They also posted this on Facebook:

When they say "the link between sugar and Type 2 diabetes is undeniable", they really should be talking about the link between obesity and Type 2 diabetes.

The also posted this on Twitter (highlighting that they absolutely haven't apologised):

I don't need an apology to make me feel better.  I know enough about diabetes to not need their validation or permission to do what I want.  I do want them to apologise for being lazy and irresponsible with their language that perpetuates the stigma of diabetes.

There's a reasonable chance you're reading this because you know me in some way, so you've probably read a lot of the science that distinguishes between Type 1 and Type 2 and nodded along.  Other people with a lot less experience of diabetes (like me 15 years ago!) simply do not know (and we shouldn't necessarily expect them to know) the difference, and are likely to be guided by the 'facts' that companies like CrossFit have misrepresented over the last 24 hours or so.

If you want facts about diabetes in this country, visit the Diabetes UK "Guide to Diabetes" page where you'll get accurate information.  Don't rely on companies with gimmicks to tell you the truth about something complicated.

There's a daily struggle to change that stigma that many people are subjected to that says having diabetes is your fault and you're to blame.  Some diabetes is preventable, but a lot of it (including all Type 1 diabetes) simply is not.  CrossFit haven't helped do anything to change that stigma and stereotyping and I think that's a real shame.

Apologies this has been long winded, but highlighting and disproving 'claims' like the ones CrossFit made today is really the only way that the perception will gradually begin to change and people with diabetes will stop being bullied, stigmatised, stereotyped and blamed about their condition.  We wouldn't put up with it for other long term illnesses, why should we stand by and accept it for diabetes?

CrossFit - #ImNotYourHomie

Progress

Another week down and the miles are stacking up now.  I’ve now covered over 300 miles this year which is quite satisfying.  You may remember from a previous post that I covered 450 miles throughout all of 2013 and I was hoping to make 600 miles for 2014.  Whilst I might only have just gone over halfway to that target (with almost two thirds of the year gone), I think I’ll make 600 comfortably by New Year’s Eve.

 

It’d been a slightly mixed week with my first “long” run of the training now behind me.  It probably went about as well as I’d expected – a quick first 6 miles followed by a slower return home giving me an average pace of10:22 per mile.  It’s easy to pick out the negatives (the return was a lot slower than I would have liked) and the positives (that overall pace would get me a 4:30 marathon time) but I think I’m just content to have managed 12 miles without injury.   I’ve got some longer distances ahead of me over the next 8 weeks, including 16, 18, 20 and 22 miles before the race so drawing on the positives is going to be key over the next couple of months.

 

This week’s training began yesterday with (a little over) 4 miles.  It felt quite slow and broken as I couldn’t seemed to find a rhythm or any power in my legs (despite 3 days off from running) but actually it was actually better than I thought.  Perhaps I’ve been setting some higher (and slightly unrealistic) expectations of myself recently and I need to look at setting a reasonable pace and trying to stick to it for longer distances.  Saturday will be a 14 mile run – my longest of 2014 so that will be a good opportunity to get some proper race practice.

 

In more exciting news, my weekly dual with the bathroom scales showed I’d dropped to my lowest weight of 2014 which is really encouraging.  Again, 188lbs is possibly not something you’d want to shout from the rooftops (just an internet blog…) it’s good to see that there’s another payoff to dieting and running.  A quick check of a BMI calculator says I’m still overweight which I knew and that really to have a “healthy” BMI score, I’d need to lose over another stone.  I’m fairly sure that’s ambitious and really unsustainable in the long term but I’m quite happy to see where my reduced calorie diet and exercise program will take me.

 

A word on food and nutrition before I finish.  Having Type 1 diabetes means I fixate on food a lot more than a lot of other people I know.  My daily life is a series of maths problems regarding carbohydrate content, insulin doses and blood glucose levels.  I suppose in some ways, that makes dieting easier as I’m always looking at food labels before I eat anyway – now I’m just checking calorie content as well as carbs.  I’m currently on a diet of 1200 net calories a day which is about as fun and restrictive as it sounds.  But it does mean I’m losing some weight and I’m making more healthy decisions around what I eat.

 

Work days are all fairly similar – salad for lunch with some oatcakes for low GI carbs to keep me going.  My evening meal is usually grilled  fish or white meat with some green vegetables and either wholemeal bread on rest days (to keep a slow release of energy) or some pasta after running (to quickly replenish the energy I’ve used from exercising).  I know as I start really picking up the distance that 1200 calories a day just isn’t going to be practical, but by then I’m hoping I’ll be at a lower weight that I can sustain with more food on a daily basis.  But for the time being, this diet focuses me on making sensible, healthy choices with what I eat and it seems to be working well for my overall health and wellbeing.

 

As usual, a final mention of my fundraising page.  I’ve raised £160 so far against a target of £1,000 for the year.  I’m incredibly grateful to all those who have generously parted with their hard earned money to donate to Diabetes UK.  Raising £1,000 would mean that Diabetes UK could train 20 risk-assessment volunteers who work at Lifestyle roadshows, connecting with some of the 7 million people at risk of Type 2 diabetes and helping them to make sensible diet and lifestyle choices to reduce their risk of getting diabetes in the future.      Prescribing is the second highest area of spend in the NHS (after staffing costs) and in 2013-4, diabetes prescribing accounted for almost 10% of that cost (up from 6.6% in 2005-6).  Helping to educate people at risk will not only make their lives better in the long run, but will go some way to reducing the huge strain that diabetes places on the NHS.

 

If you can spare anything at all, please click on the link to the fundraising page and donate, or test BROO81 £5 to 70070 to donate via text.

 

Thanks.

Peer Support

There should be little doubt that living with diabetes can sometimes be difficult to the point of making you feel overwhelmed.

Having a good support network is key to helping you manage the times where you feel like you're not sure where to turn or what to do for the best.  Many of us are fortunate enough to have a group of close friends or a supportive family to help us when we need it; to listen to our problems and offer a sympathetic ear.

Some people are a little less fortunate or may even feel worried or embarrassed about revealing a particular problem or concern to someone they have a close relationship with.  In these cases, Peer Support can be an effective tool for people with diabetes.

Peer Support is an incredibly valuable service that's run on a purely volunteer basis aimed at providing anyone affected by diabetes, whether it's you with the condition or you're a parent or carer for someone with diabetes.  All volunteers go through training provided by Diabetes UK to ensure they're able to listen to whatever you have to say and provided support, advice or guidance wherever possible.  Anyone can get in contact via phone or e-mail and you can read more about it on the Peer Support page

Recently I've become involved, along with another volunteer Louise, in a new strand of localised Peer Support that is being piloted by Diabetes UK.  The overall aim is to be able to offer the same Peer Support service described above, but also offer informal support in a more social environment on a group or face to face basis within our own local areas.

Louise and I are offering Peer Support through a number of different mediums (Twitter, Facebook, and via a shared blog) as well as looking to utilise the Diabetes UK forums if at all possible.  That support will be open to anyone who feels like they need to get something off their chest, just needs someone to listen or simply needs pointing in the right direction for some support or advice.

On a local level, we're hoping we can promote the service by getting local doctors and healthcare professionals on board and by asking our diabetes specialist teams to make sure everyone in hospital clinics knows what we have to offer.  As interest hopefully grows, we'll be looking to arrange informal meetings for people to get to know each other.

Our new Peer Support work hasn't been going very long but it's starting to gather momentum and the more we can spread the word, the more we'll be able to help people affected by diabetes with anything they might need.

Louise and I aren't experts with years of medical training, but we do have a wealth of experience in living with diabetes and know that sometimes, having someone who's able to listen will do you the world of good.

If you want to find out more about what we're hoping to achieve, please visit our Peer Support Blog which also details how to get in touch with us by e-mail.

You can also connect with us in the following ways:

Andy (Sheffield area)

Twitter:  @AndyPeerSupport
Facebook: https://www.facebook.com/pages/Diabetes-Peer-Support-Sheffield/534756433284902


Louise (South East)

Twitter:  @LouPeerSupport
Facebook: https://www.facebook.com/diabetespeersupport

If you've got something that's been troubling you then please consider using Peer Support as a means of unburdening yourself.  We use the hashtag #talktosomeone on Twitter so if you need help, support or advice then do Talk To Someone.


Important: All Peer Support volunteers have been through training and checks to ensure you're always discussing any issues in a safe environment.  Your details will be kept confidential at all times.

Divided and United

This blog was first published on the Diabetes UK Blog site in November 2013

Despite being a member of a "club" along with about 4 million other people in the UK, having diabetes is a very individual thing.  The intricacies of the treatment varies from person to person (think insulin to carb ratios) and some will have symptoms that others don't (e.g. hypo awareness).

How we each manage our own conditions, and everything else that comes with it, is a very personal thing to us.  The people we interact with and discuss our daily highs and lows (pun not intended) is also an individual thing.  Some choose to talk openly to the #doc (diabetic online community), others attend local meetings and some may only share with their nearest and dearest.

Despite the myriad individual things that set us all apart from other diabetics, I recently realised that there are a lot of things that do unite us.  I think it probably helps to remember when we're having a bad day that there's someone else who's been through the same things we have, and that should make us feel a little less alone in the universe.  What follows is a list of things that I think we've all done or experienced at some point in our diabetic journey (the list is a little Type 1 specific as I'm speaking from experience, but I've tried to include the Type 2 ones I've discussed with others)

• Being told "you can't eat that" or "should you be having that?!"  
• Testing your BG only to get a reading in the 20s that you can't possibly explain
• ...and conversely, getting a low BG reading when you have no hypo symptoms
• Writing down your insulin dose in a diary but forgetting to actually administer the dose (really hoping that's not just me!)
• Waking up in the middle of the night and losing an hour of precious sleep to deal with a hypo
• Hearing that you have the "naughty" type of diabetes (something I've heard said to Type 2s a few times!)
• Concocting an elaborate excuse ahead of annual review time to explain a wayward HbA1c
• Having a particularly bad day where you end up saying "sod it, I'm having chocolate"
• Stacking insulin doses so you end up with low blood sugar
• Having a BG reading that's either so high or so low that you do a double take on your meter
• Wasting a test strip because you don't get quite enough blood on the end
• Being slightly irritable and having someone tell you to test your BG because they think your sugars are too high/low
• Getting blood on your clothes after a bolus injection or a cannula change

It's obviously not a comprehensive list but hopefully it does illustrate that whilst we have our own individual plans for dealing with our diabetes, there are some moments we all share.

It can be hard to feel like you're always in control of every aspect of your diabetic life and it can be quite easy to feel like you're the only person in the world who is struggling with something.  Hopefully you might recognise a few of the things from the list above and realise that while we're all individual, we're also all united by the same things that diabetes forces upon us every day.

Can you think of any I've missed?

World Diabetes Day

Tomorrow (Thursday 14th November 2013) is World Diabetes Day (WDD for the sake of my typing).  It's going to be the first time I've "celebrated" it and I've been thinking about what it really means to me.

The short answer is "I don't know".  I've been diabetic for 12 years now and truth be told, I've only known about WDD for a couple of years despite it having been running since 1991.  Those with curious minds can visit the International Diabetes Federation website to find out a bit more about it and the significance the date holds.

Obviously I'm all for anything that helps promote awareness of diabetes and the various difficulties it brings.  There's without doubt a certain stigma that comes with it as many people are unaware of the different "types" of diabetes and the different causes/effects of each.  Again, I'm not going to shove the information down your throat, but Diabetes UK have a pretty quick and effective guide to Type 1 and Type 2 diabetes if you're interested.

I've done a fair amount of work over the last 12-18 months to help fundraise and awareness on behalf of Diabetes UK (thanks to everyone who's supported me in those ventures) but I'm still unsure of the best way to "mark" the day, or whether I need to mark it at all.

I've got some great friends within the Diabetic Online Community (#doc) as well as some great relationships I've formed with people I've met via hospital courses or through my local Voluntary Group.  I'm sure tomorrow will be like many others in a lot of respects in that I'll experience a few highs and lows (physically, metaphorically and blood glucosely) and that I'll chat some of the same nonsense I always do.

After a little contemplation, I decided that I'll rock up to work in a blue shirt and tie (repping the IDF colours) and that I'll try and "live tweet" my day as a Type 1 diabetic.  I'll post my blood glucose readings, my meals, my carb calculations and some of the emotional responses that a "typical" day with diabetes can elicit.  (There's a lot of talk around the associated mental health problems people with diabetes can face that you may not be aware of).

If you want a snapshot into the world of a diabetic, or might know someone else who'd be interested, you can follow me on Twitter at @BroomOwl I'll do my best to tag my posts with #WDD and #DILOD (Day In the Life of a Diabetic) depending on character limits and all that.

I suppose tomorrow will be a chance to reflect and be thankful that whilst having diabetes can suck some of the time, I'm lucky to be alive in a time where modern medicine means I've got a pretty decent shot of living with it for years to come.

Thanks

Mental Strength

This blog was first posted on the Diabetes UK blog site

When discussing diabetes, it can be quite easy to revert to familiar topics depending on who you speak to. Talking to other people with diabetes can lead to trading war stories about particularly unpleasant hypos or serious hospital stays as well as what type of therapy they use to manage their condition. Talking to people who don't have first hand experience of diabetes can turn into a discussion about being type-aware or explaining (for what may feel like the millionth time) that yes, you can have a biscuit/chocolate/piece of cake without needing serious medical attention.

What doesn't get possibly as much discussion are the mental aspects of having diabetes. I'm by no means an expert but I think it's important to make time to give these 'hidden' aspects as much consideration as other factors.

I think it can be quite easy to bypass how you feel about having diabetes because living with it becomes such a normal part of your day, you don't necessarily stop to think about it.

What prompted me to consider this quite recently was the set of forms I received as part of my REPOSE 6 month follow up. The premise is quite simple - you're faced with a number of statements and asked to score them on a scale of 1-5 based on your experiences over the last 4 weeks (e.g. very likely to very unlikely, extremely important to totally unimportant etc.)

That sort of process in itself isn't anything new, but what it does offer is a chance to reflect on those moments when you might have felt sad, angry or frustrated and not consciously understood the reason why.

Some of the questions are quite generic and deal with how you rate your quality of life overall, how you feel on a daily basis and so on. Others ask you to consider how living with the specifics of diabetes affects your relationships with the people around you and your day to day activities or future ambitions.

Whilst I wouldn't dream to speak definitively for anyone else, I'm sure that at some point, many people with diabetes have experienced some sense of anger or frustration that relates to their condition and I know I certainly have. What I don't tend to do is reflect on those feelings and either rationalise them or find someone who can help me with them.

If I were to ask you how much you feel burdened about having to think about your nutrition or how frustrating you find the fact that others don't understand your treatment, you might not give them too much thought. Hopefully for the vast majority of people, such things really aren't factors in your day to day life. However, for some people, struggling through on new regime of insulin therapy or coming to terms with a recent diagnosis can leave them feeling stranded and alone.

Whether you've been diabetic for 12 weeks for 12 years, you're bound to go through difficult times at some stage and but it's being able to manage them that is important.

My lowest point came after about seven years after my diagnosis (I'll have been a fully paid up member of the T1 club for 12 years in October). I got to a point where testing my BG and seeing constantly high numbers would make me feel depressed so I stopped testing regularly. I don't mean that I'd test once a day, I'd be lucky if I tested once a week. As a result my HbA1c rose steadily and I was going to 6 monthly hospital reviews armed with more and more constructive excuses and promises that things would be different next time. I'd be economical with the truth with my family because I felt ashamed I wasn't looking after myself when really I didn't want to admit that I either felt too exhausted to do it, or I couldn't remember how. This continued for about 18 months before I eventually came clean and with the help of my wonderful wife, I started to get things back on track.

I'm incredibly lucky that I have a very supportive family and a great relationship with my specialist team that helps me through the tougher times. There's also a lot of other support out there in various other guises and there's also a growing online community of people with diabetes who can listen and help you.

Filling in my 6 monthly review forms has been a cathartic experience and a reminder that whilst things might feel good today, I've also experienced some serious low points and managed to come through them relatively unscathed.   If I'd had to fill in the same forms a few weeks after getting my insulin pump, I know for a fact that the answers to some questions would have been markedly different but being able to reach out for support to the right people at the right time has made me stronger.