5000 Days with diabetes

Today marks a milestone for me.  It’s my 5000^th day with diabetes.  It’s nothing special in itself I suppose – I’m coming up on 14 years since my diagnosis, and many people have lived with this thing for a lot long than I have.  But 5000 days… that’s worth considering.

Generally, looking back on life, we often find it hard to believe how naïve we were about a lot of stuff – laughing at our younger selves for not knowing things that seem so obvious to us now.  My relationship with diabetes is no different.

I remember my diagnosis.  It was the start of my graduate year at university, and I’d been flicking through a magazine when I happened upon a side-bar that was talking about some symptoms of Type 1 diabetes.  Reading through it, I was mentally crossing them off… tired all the time, drinking a lot (of water!), needing the toilet all the time… This had been happening to me for over a week.  I could never drink enough water to quench that thirst, no amount of Mars bars would give me energy to stop feeling lethargic (...seriously).  I couldn’t see the notes on the board from the front row of lectures.

So I went to see the campus GP and told her I’d read a magazine and I thought I had diabetes.  To be fair, I’d have been sceptical in her position – I suspect it’s the equivalent of Dr Google these days.  But  I had a blood test and got a call the next day…

“You’ve got diabetes.  I need you to go to the diabetes centre at the hospital…”

“Er…” *looking at lecture schedule* “I could go Wednesday afternoon?”

“I need you to go NOW.  Right now!”

And that changed my life.  There’d been a kid in my class at primary school who had diabetes.  He was insanely resilient – you never really saw much indication of it at all – he just got on with doing what other 8 year olds do.  We all knew he had to have a needle (and this was the 80s so it was proper needles) but that was it.

Now I was sat in a room in a hospital with my parents who’d just bombed up it the motorway, with a nurse (Vicky Clancey) who was telling me I had to inject myself every day (along with a lot of other information).  I think I asked if I could just have a pill or something not utterly terrifying but to no avail.  I came home with a mountain of papers, booklets and more medical supplies than you can shake a stick at and I got on with it.

Over the next decade or so I had a complicated relationship with diabetes.  I worked hard some of the time, and saw the benefits of it on that half yearly report we’re all so familiar with now.  Other times I gave up entirely.  I took insulin when I was supposed to, but testing became a thing of the past – used only to justify eating when I was low (both blood sugar and emotionally).  And I spent time in between those extremes, giving my health the minimum attention it needed.

I think all that changed about four years ago.  The chance to take part in a clinical trial looking at insulin pumps and education courses (here’s link to an article discussing the results) was a huge turning point in my life with diabetes.  It finally allowed me to fill in the huge gaps in my knowledge, gave me the opportunity to meet people in the same boat as me and let me see that there was a world of other people that I could talk to.  I spoke at the Diabetes UK Professional Conference earlier this year about how DAFNE changed my life, and I don’t think I could ever possibly state how much that is true (you can read/watch more about my relationship with DAFNE on the Diabetes UK Taking Control site).

So I look back at myself now, after 5000 days of counting carbs, injections, finger­-prick tests (sometimes!), set changes and I can’t help but laugh.  I wrote on the very first post on this blog (which started as a London Marathon training blog) that “Whilst I’ve been diabetic for the last 10 years, I’ve…never let it define who I am”.  I don’t think that could be any further from the truth now – at least in some sense.

I used to be a terrified young adult who’d never really accepted this… thing… he’d been given.  Someone who was scared to ask for help, didn’t want to hear about complications because I was too young - that stuff will never happen to me right?  Someone who felt so low he gave up looking after himself for almost two years without a thought to the consequences.

Now, it’s different.  Diabetes is absolutely a huge part of my life – it has to be.  I feel part of a community that I can ask for help whenever I need to, and I’ve made some truly amazing friends as a result of this condition.  It’s still not always easy by any means, but it finally feels like that millstone around my neck has turned into something a lot more manageable and, dare I say it, more positive than I’d ever expected.

I don’t think you can live with a chronic illness without experiencing highs and lows (…sorry) but I think it’s about how we emerge from them that really matters.  We all carry battle scars as a result of diabetes (physically and mentally), but we’re still here, we’re still fighting and we’re still living, not just surviving.

How I felt back in October 2002 is completely alien compared with my outlook on diabetes today.  You go through a lot over 5000 days and how you use that life experience is so important.  I’ve gone from being a naïve 21 year old to a 35 year old who understands so much more than I thought possible (or at least I think I do...). 

I’ll be almost 50 by the time I reach 10,000 days with diabetes.  There’s going to be a lot more to learn, but I finally think I’m up to the challenge.

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.

DAFNE

This blog first appeared on the Diabetes UK blog site on 6th February 2013



As part of the REPOSE trial I talked about last month, I recently attended a DAFNE course.  I'll be honest and say that a couple of weeks beforehand I was still pretty skeptical about attending.  Not so much because I didn't think I'd get any benefit from it, but more that I'd never been given any information about what DAFNE was beyond "it'll help with your carb counting" and couldn't understand how it was a five day course.

That said, after I'd had the pump on for a few days, I was really eager to get started and by the time the course started I honestly couldn't wait.   I didn't feel too apprehensive at the start, as I'd already met half the people on the course when we'd had our pump induction, and I knew that everyone there was in the same position as I was.

I thought the DAFNE course (Dose Adjusted For Normal Eating) itself was very well structured.  We followed a daily timetable with 4-5 sessions per day, building on regular daily topics such as insulin dose adjustment and carb counting/nutrition as well as discussing other topics such as alcohol and exercise.

For the afternoon session on the second day, we were invited to bring along a family member to give them the opportunity to see what the course entails, and to speak openly about their experiences of living with someone with diabetes.  I think that helped a lot as it allowed us to reflect on what those we love have to deal with, which I would guess is a point of view we don't often stop to consider.  I think that afternoon worked really well and having everyone participate in the exercises was great.

What I found surprising (and a tad embarrassing) was the amount of the history/biology about diabetes that I either didn't know or that I'd forgotten.  While I suppose it's all a matter of personal preference, I enjoyed the sessions that touched on that information as I felt like it provided a great base for all the other topics we were discussing.

There were, of course, some more difficult sessions, and the one we spent discussing the long term complications of diabetes could have been uncomfortable to talk about.   We spent the time in two teams, playing a game of which complications could be specifically diabetes related, how they were caused and what could be done to prevent them.  It lightened the mood and allowed us to learn at the same time.

I think as a group we all agreed that being in a safe, open and honest environment with people all in the same situation was one of the best things about the week.  As I may have mentioned previously, I've not actually met anyone with Type 1 diabetes before and so to be able to share experiences, tips and frustrations with a group was such a positive thing.  I was also relieved to find out I'm not the only one who sometimes forgets to change needles and lancets as often as I should!


As part of the course (and over the next two years as part of the trial) we are all recording our BG readings, carbohydrate portions and insulin doses on a daily basis.  We began and ended each day with a review of the numbers.  I think that really helped to build a great spirit in the group and allowed us to share advice with each other.  It was pretty nerve wracking presenting your numbers back to the group for the first time, but by Friday, it was an experience we'd all got into and were going to miss quite a lot.

Being in that environment gave everyone a lot of confidence to speak up and discuss their own situations without feeling judged or under pressure.  That similar feeling when sharing BG levels (some not always the numbers you'd hope for) was valuable in discussing our progress.

It would be remiss of me to talk about the course, the environment and the structure that allowed us all to benefit so much from the week without a mention for our DAFNE Educators.  We were lucky to have three Educators supporting our course all week, two diabetes specialist nurses and a dietician.  Their enthusiasm and encouragement kept us going for the week and I personally think they did so much to help foster the environment that allowed the course to work so well.  Thank you Carolin, Val and Val.

After a full week using the pump with insulin I'm starting to get accustomed to it and DAFNE has put me in an excellent position to feel confident using it and adjusting my doses where necessary.  On a personal level, one of the hardest things I've had to do is learn to curb my desire to try and fix everything at once and adopt a more patient and measured approach to fine tuning my regime.  I'm not quite there yet, but having the confidence and knowledge to be able to make changes should hopefully mean I'll have all my BG levels within target very soon.

As a final word, I'd encourage anyone to follow this link to the DAFNE User Action Group’s e-petition and sign it to lobby for a centrally funded diabetes education programme.  Studies have shown that not only does education help diabetics manage their condition with better glycaemic control and fewer hypos, but that the education will effectively pay for itself within five years.  Please take the time to follow the link and encourage as many others as you can to do the same.

Whilst I may have been skeptical before I started, I'd nopw say I'm a huge DAFNE advocate!  I'd be keen to hear on your own experiences of diabetes education courses, DAFNE or others.