Showing posts with label #dblog. Show all posts
Showing posts with label #dblog. Show all posts

Tuesday, 18 April 2017

What did I used to know?

Before the world began to teeter on the edge of nuclear annihilation and every media outlet imaginable turned into Politics 24/7, I was thinking... "what did I used to know?"

I used to know a lot of stuff.  I've studied, been to places, met people, cooked food, heard music, and many other things besides.

Credit: Anchorman and Google and whoever made this pic
But I'm fairly sure there's stuff I did know that's kind of... seeped away.  Not important stuff obviously - I still know the words to every Arctic Monkeys song, most of the dialogue to Terminator 2 and my daughter's name.



Well I couldn't, but....


But I genuinely think my brain has given up on some stuff.  I found my Master's dissertation the other day and whilst the general topic was vaguely familiar, I don't remember a word of it.  I agonised over that, read papers, had meetings... I even went to the library!  (This was before the internet was really a thing...)

So what has all this fantastic(!) knowledge been replaced with?  Carb values - that's what.

Slice of medium bread?  15g - 18g of carbs.

Decent biscuit (like a chocolate digestive)?  10g of carbs

Rice Krispies?  85% carbs mate.

It's like living in the Matrix for all intents and purposes - you see the numbers floating in front of you everywhere:


Banana? 25g - 30g 

I mean of course this is slightly dramatised for effect, but I think we're so accustomed to seeing food as numbers (and recalling those numbers on a daily basis) that it certainly feels like the stuff we used to know has simply disappeared.

I'd ask you what you've all forgotten since you started being able to recall carb values on command, but I bet you can't remember...

Until next time, hasta la vista baby.

Sunday, 6 November 2016

T1D Looks Like Me

November is DIABETES AWARENESS MONTH (though I'm fairly sure every month is Diabetes Awareness Month...).

The current JDRF campaign for #T1DLooksLikeMe got me thinking about diabetes awareness.  I suppose to some extent there's a lot of awareness of the concept of diabetes at least.  The last few weeks alone have seen numerous TV programmes attempting to highlight some of the long term complications of diabetes and talking about what can be done to reduce the risk of developing Type 2 diabetes in the future.

The thing about living with a chronic illness like Type 1 diabetes is that it's all the things people don't see that really define what your life is like.  To borrow from Public Enemy, those who know, know; those that don't have no idea.

This is for those who don't know (yet).

Fourteen years of Type 1 diabetes in just four numbers

I've had Type 1 diabetes for just over 14 years.  I've had good days and I've had great days.  I've had bad days, and I've had terrible days, and I've had everything in between too.

As the graphic above says, I've had to inject myself with insulin almost 17,000 times (plus around 450 cannula changes since starting with an insulin pump in early 2013).  That's something that never gets any easier for me.  There's still always a sharp intake of breath and a second of silence before the needle goes in.  I still remember being told on the day I got diagnosed that I had to inject myself in the stomach multiple times a day otherwise I'd die.

I've had to test my blood glucose levels almost 31,000 times in the past 14 years (or around 6 times a day, every day).  Some of my darkest times I've had living with this were when I abandoned testing pretty much entirely for around 18 months about five years post diagnosis.  I was lost and unable to cope with the idea of living with diabetes, so I tried to ignore it.  I found out the hard way that doesn't work.

'You see a meal, I see a problem to solve'

Living with Type 1 is relentless - a non-stop series of numbers that you have to understand and act on.  Eating becomes something entirely different.  Sitting down at the table, you see a meal, I see a problem to solve.  What's my blood glucose level now?  How many grams of carbohydrate are in this?  How much insulin do I need to take?  Is it the kind of meal that means my levels will rise later on (I'm looking at you here pizza...)?  And you have that thought process every day, every time you eat.  There's little wonder that people with diabetes are more likely to develop an eating disorder compared to the rest of the population.

It's the little things that sometimes take the biggest toll.  Cutting short exercise because your blood sugar drops too low, or not even being able to start exercising in the first place.  Spending 50 quid on a glucose sensor and having it in the back of your mind every time you get changed because you don't want to knock it off.  Wishing you could take a shower without catching your cannula (or making sure you don't catch the tubing on a door handle because it's agonising when it pulls out when you least expect it).

'Shaking, sweating, dizzy and your heart pounding'

And then there's dealing with the extreme levels of blood sugar.  The lows (hypoglycaemia) that leaving you  shaking, sweating, dizzy and your heart pounding, scrambling for some fast acting glucose to get back to 'normal'.  I don't think I know what 'normal' is any more.  The other end of the spectrum is the highs (hyperglycaemia).  Feeling sick and sluggish, the insides of your eyes feel like treacle and you're left with an unquenchable thirst until you've taken insulin to bring you back down to 'normal' (there's that word again).

Finally there's the quiet voice at the back of your mind, reminding you about the potential complications of this... thing that I live with.  Compared to the general population, I'm twice as likely to have a stroke or heart attack.  I'm at risk of developing long term kidney and eye problems as well as neuropathy (loss of sensation in the feet and other extremities) which can in turn lead to potential amputation in later life.  You have to live for today, but tomorrow is never far from your mind.

I think you adapt quite quickly to living like this.  There's no alternative really - doing nothing will get you in all kinds of trouble really quickly.  One thing I've learned over the past 14 years is that you never stop learning.  Talking to other people with diabetes, going on courses, going to support groups... there's always something new to learn and your body will always throw you a curveball when you least expect it.

This is what Type 1 is to me.  A constant sea of numbers, staving off lows, fighting highs.  Being awake at 2am because I desperately need something to eat, or bleary eyed, I need insulin to combat high blood sugar.  Living with a chronic illness isn't easy - in fact it's downright exhausting sometimes.  But it hasn't kept me down yet and hopefully it won't in the future.

Wednesday, 2 March 2016

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.