As part of World Diabetes Day on November 14th 2016, I posted regular Facebook updates about what it's like to have Type 1 diabetes. Those posts are presented here
Tuesday, 15 November 2016
Sunday, 6 November 2016
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.
Tuesday, 6 September 2016
Monday, 11 July 2016
Saturday, 4 June 2016
"Let's get back on track". That was the sombre advice from my Garmin app this morning after yet another appalling attempt at running. "Let's get back on track"...
The truth is, I feel pretty broken at the moment. For once in my life, the only thing that seems to be taking relatively little effort on my part is having diabetes. That's a strange thing to write really - the thing that's a 24/7 fixture in my life is the easy bit.
As usual, there's a lot going on (which is of my own doing), but it all seems to have fallen at once so I'm stumbling from one thing to the next without much time to think. That's not always a bad thing I guess - the pressure of working on a few, quite different things is interesting and definitely keeps me on my toes.
But it does mean a few things are getting squeezed out (I've not found a way to add a few extra hours in the day yet). Worryingly, it seems to be any kind of exercise which I'm sacrificing at the moment. Given my pathetic metabolism, that means I've invariably put on weight, and I seem to be obsessing about it rather a lot.
I look back at where I was 12 months ago, and I was running 100 miles a month, at my lowest weight for about a decade and feeling invincible. Now I'm struggling to run 4 miles (partly due to a stubborn knee injury I sustained mid-April), I'm about 12lbs heavier than I have been in ages and quite frankly it's making me miserable.
I seem to have developed some kind of weight obsessed insomnia as well and I'm finding it tricky to switch off, which is a little frustrating given how tired I actually feel at the moment. There's a lot running through my mind every night but I seem to go back to how frustrated I am that I can't run, and the effect it's having on me.
I've been travelling a lot lately for various reasons (social and otherwise) - London and back three times in six weeks (with another three in three weeks at the start of July)...
To be honest, I don't think there's much of a point to this blog, other than to write all this stuff down so it's one less thing in my head.
I should be able to shift some of this unwelcome weight which will make me feel a lot happier. Body image problems can't be over-stated in my opinion and it's something I wrestle with a lot more than I let on. I know my knee will come back to being somewhere partly sensible so I should be able to get out and find the enjoyment I got from running last year. And hopefully I'll get some sleep too.
At least diabetes isn't causing me too many problems. For once.
Until next time.
Monday, 4 April 2016
Mondays pretty much start the same way for me every week… The alarm goes off around 5:45am, and, silently cursing, I take stock of how I’m feeling… light-headed (hypo), a bit stiff (hyper) or just tired (‘in range’)? I drag myself to the bathroom and stand on the bathroom scales. And I sigh.
Diabetes is an enormous daily battle that I won’t rehash for the millionth time here and now. I’ve lived with diabetes for long enough now to be able make most days ‘better’ days, though I’m not impervious to the bad days by any means.
I’ve started writing this blog post a few times and I’ve held back – I’m scared of straying into unchartered waters and accidentally throwing opinions around on things I (and many other people) don’t really understand. But here we go.
I can tolerate Type 1 diabetes most of the time, but where I struggle every day is with my weight.
About 18 months ago I devoted a huge amount of energy and effort to tackling my weight and lost 3 (and a bit) stone to get to a position I was vaguely happy with. I cut my diet back to about 1200 (net) calories a day, ran 20-30 miles a week as well as doing four or five mornings a week on my exercise bike. It was exhausting and took over my life, but I did it. But that’s when it started to get difficult…
I’ve always found it (kind of) manageable to lose weight, but I’ve equally found it far too easy to put it back on again within a few months. This time I feel like something is a little different. I’ve had fluctuations obviously, but I’ve pretty much avoided piling the pounds back on. But it’s much harder work than it was to get to this position in the first place.
What I’ve discovered is that actually, my body only really needs around 120-1300 (net) calories a day anyway and regularly eating above that means I’ll put weight on. My diabetes consultant refers to it as being a ‘thrifty phenotype’ – basically if there’s an apocalypse, you’ll probably starve before me (sorry), but basically I don’t need a lot of food to keep ticking over.
This creates a number of problems for me. The first, and most obvious one is that I LOVE food so I feel like I’m constantly faced with the choice of skipping one meal in favour of another. Or I have the chance to go out and run 6 miles to be able have something. Whilst I both love and loathe running (it feels like life support to some degree), my life doesn’t allow the same number of opportunities a week to pound the pavement, so more and more I feel like I’m choosing breakfast plus one other meal.
The second problem is food guilt. I’m sadly not immune to the temptations of an occasional takeaway. Having skimped on calories for the rest of the day (and/or been for a run), I’ve been known to dabble in a chicken chow mein from time to time. The thing is that pretty much as soon as I’ve eaten it, I have an overwhelming feeling of guilt about what it’ll do for my weight and I’ll compensate for days afterwards too. I have genuine regret about something I’ve treated myself to, and I’m pretty sure it’s not healthy (the guilt that is, the takeaway definitely isn’t…). If I’m eating out at restaurants, I’ll pick a salad more often than not because it’s not a guilt-inducing. Having a hypo is a nightmare when I feel like this – I’m eating calories that I don’t want to correct it and I resent them for it.
The last problem is how it makes me feel. I’m writing this after stepping on the scales to find out I’ve put an improbable 4lbs on this week, and it’s pretty much all I’ve thought about all day. I knew last week I would have put a few on (about 3lbs) as I’d been away for Easter and it’s a lot harder to stick to a calorie goal while you’re away. But being back home hasn’t improved things. I know I used to be a lot heavier, but I look in the mirror and I’m fundamentally unhappy with how I feel. I hate the nagging from my inner voice before I eat anything…
I’m used to seeing food as numbers – it’s impossible not to when you’re doing mental arithmetic before you eat anything. But I see calories everywhere too, and calories scare me a lot. Having diabetes puts me at a greater risk of stroke, heart disease and cardio vascular disease, than people who aren’t ‘in the club’. I’m about twice as likely to suffer from one or more of those as a result of my diabetes, and being overweight doesn’t help my chances much either.
I’ve noticed that gradually, I’ve stopped cooking new things almost entirely because I know I can rely on the knowledge that what I eat most days, falls into safe zone and I don’t want to stray from that safety. I know when I do stray, I’ll have put weight on. And when I put weight on I’ll be miserable until I’ve lost it all. I feel like I’m resigned to logging everything I eat for the rest of my life to be able to stay at a healthy(ish) weight, and the though of that exhausts me.
I wrote recently about how a day off from having diabetes would be nice. Having a day off from this food guilt and unassailable obsession with my weight would be nice too.
Thursday, 31 March 2016
When Neil and Athinyaa spoke at DPC16 at the start of the month, everyone listened - it was a heartfelt, emotive talk about providing care to people, not patients. This blog they've written continues that theme, and it's incredible. Enjoy.
Monday, 28 March 2016
* I'm going to keep linking to that video because a) it's funny and b) it's a reminder to keep grounded about our opinions on stuff generally
I've already written twice about the Libre:
- This is about how I felt before I started
- This is about my experiences of my first sensor
But I'll try and give some of my more general thoughts on it in case it proves helpful to anyone thinking of parting with the money for the first time.
- It gives you more information, and (here's the caveat), with the right understanding, more information is very powerful. It's not about the number of results - with the right tolerance for pain, you can get the same amount of data but the information (about what direction your BG is heading) is a very important addition
- It can be a very motivating tool. Diabetes isn't a game, but approaching it like one can be beneficial. I get a big psychological boost from seeing the trace line staying within the bounds that I set spurs me on. It also gives me confirmation that I know what I'm doing (at least some of the time), but...
- When things aren't going my way (particularly when I'm high), I find the Libre very demoralising to the degree that I think it almost has an adverse effect on me. Recently my BG was rising and rising and rising and I'd ruled out illness, bad carb counting, bad insulin/cannula... everything. And still it rose. As it's so easy to swipe and test, that's what I do. And it makes me unhappy and frustrated which doesn't help. With a fingerprick, I feel like I make much more of a choice to test, and so I can switch off from it if I want. I don't approach it in the same way with a Libre.
- It makes me feel more confident that I can correct from a relatively good reading (say 7.5mmol) to something 'better' like 6mmol and not go too low. It's like it gives me the opportunity to nudge my BG either up or down to stay within my own target range.
- I feel like I've ended up eating fewer 'proper' meals and started snacking more as it gives me the chance to feel more in control of how my BG is behaving. I'm not sure that this sort behavioural modification is a good thing or not, but it seems to be an unintentional side effect.
- It takes the stress out of some aspects of diabetes, particularly overnight basal testing. Being able to get a full picture by swiping once every eight hours means I can test right before bed and first thing in the morning and start to identify any problem areas - I think that's a real positive.
- The graphs and data the software gives you are very helpful. I've never seen my own "ambulatory glucose profile" before, but I feel a lot better being able to see it. The HbA1c estimator is also pretty helpful, and (in my limited experience), not far off being accurate either.
- You have to decide for yourself how you define its accuracy. I know what I kind of expect my BG meter to tell me when I start feeling low, and equally when I get that sticky feeling behind my eyes when I'm going high. The Libre isn't always going to give me that same figure, but as long as I have that internal calibration, I feel pretty confident being able to dose or even correct from it's reading. But again...
- Knowing its limitations is important too. Don't use if before driving (always finger prick), don't use it if you've got an arrow showing rapidly falling (or rising) glucose - you need blood to really understand what's going on.
Saturday, 19 March 2016
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...
Friday, 11 March 2016
I wish I could drive whenever I wanted.
I wish that sticking a needle in my fingers seven or eight times a day wasn't necessary. I wish I didn't have to stick a needle in my stomach twice a week.
I wish I could go away for the night, for the weekend, for a week, without it feeling like a military operation.
I wish that being ill was just that - and not an assault on my entire body.
I wish that I didn't have to carry so much stuff around with me all the time. I wish I didn't have to keep spare sets of everything all over the place.
I wish I could go for a run without ziplock bags of jelly babies.
I wish my blood sugar didn't have to dictate my mood. I wish my partner understood my mood-swings.
I wish I didn't look at a plate of food and see numbers. I wish guilty pleasures didn't try to punish me for hours afterwards. I wish that carbs didn't sometimes feel like my enemy.
I wish it wasn't a fight.
I wish my brain would switch if off sometimes. I wish I didn't think about test results. I wish I didn't have a familiar hospital routine.
I wish I could go to bed when I was tired without needing permission from a finger-prick.
I wish that this list didn't represent every day of my life. I wish that sometimes it was just a little bit easier. I wish I could have a day off.
Monday, 7 March 2016
Having a long term condition like Type 1 diabetes unfortunately comes with a fair amount of worry as standard. The longer you live with it, the more aware you are of what can go wrong. Whilst some of it lies within your own control (stable, lower HbA1c, attend regular checkups, good diet, active lifestyle etc.), sometimes life throws you a curve ball.
For me, that came a few weeks ago after my annual retinal eye screening appointment...
"Your latest eye screening showed results of diabetic maculopathy..."
What? Worry levels set to max.
A small segue to talk about language... is that sentence above what anyone wants to read? No. Is it a bit clinical? Yes. Is there a better way of doing it though? Not sure. If there's something wrong - I want to know. An alternative along the lines of "there was something wrong/abnormal on your last screening..." is more vague and isn't less comforting. Language helps, but here I think it's a tough one to crack.
So I phoned up and made an appointment for the eye clinic. You may have noticed I was in Glasgow last week so I had to wait until today for my appointment. Worry levels dropped slightly, but remain constant.
My confirmation letter turned up before I went to Glasgow and didn't fill me with confidence...
|Maybe it's a test?|
Now the thing with the Eye Clinic is that it's very different to the diabetes clinic. Different hospital, different environment, lots of people there for a lot of reasons.
|Thankfully the sign is big enough|
I'd got there early (overly worried about being late) and was whisked away for an eye test and some drops. Interesting point to note is that if you're ever asked to read a line on the eye chart, you don't have to just try and read the bottom one (I thought it was a game). If there's a red line across the middle, that's the average - anything below there and you're doing well!
"Drops will take 20 minutes to work and wear off in 3-4 hours. Through the grey double doors and wait outside room 8 please"
This is the door opposite room 8. Worry levels increasing.
There's a lot of things to dislike about waiting rooms. I often feel they're a window into your future to some extent. A few people turned up with orthotic shoes on. Someone else had an eyepatch. Everyone was older than I was and it seemed unfair (not for the first time), that this was happening to me. Worry levels replaced by despair.
Finally I got the call. I'd been in the building for almost 40 minutes. I was in the consulting room for another six.
The doctor told me (with a smile on her face), that I was the first Type 1 patient she'd seen for a while. I smiled back, but wasn't sure I'd got the joke. She told me my previous HbA1c results were good (thanks!) and I mentioned I'd had it tested in Glasgow last week and it was 49mmol/mol (or 6.6% in old money)...
"Wow" she exclaimed. "Be careful! Do you have any hypos? Do you drive?"
As we all know by now, that one exchange is a blog in itself. My HbA1c is above NICE recommended guidelines (and will no doubt stay there). Of course I have hypos, I inject a drug that causes them if I don't eat exactly the right amount/do any exercise/it's a bit warmer than usual. Of course I drive. Why wouldn't I? Normally, I'd have said something, but I'd had enough. All I wanted to know was how bad the results were. Worry had returned. Despair had fled.
"Look here" she said, indicating to the top of her ear, shining a bright light into my eye. "Look up". More shining. "And down" eye drops and bright lights don't mix well. "To the left". Almost over. "Aaand right". Repeat for the other eye.
"OK, I'm happy to discharge you from this clinic" she announced brightly. Eh? What? You sent me a letter that said maculopathy. That's bad. I've been worrying about this for over a fortnight. That's it?
"How do you mean?" I asked. "Just go back to normal eye screening every 12 months?"
"Yes, yes that's fine! I mean there's some bleeding..."
"Yes but it's perfectly normal" she said as I climbed down off the ceiling. "Sometimes when you've had diabetes this long, you'll get small bleeds in the tiny blood vessels, but it's any leaking we're worried about. There were a few spots on the scan, but I can't see them now so it's all fine".
OK. I'm convinced by that I think. I picked up my coat and bag and paused. It's still my appointment right?
"Can I have a look at my scan?" I asked. No problem. "Can I take a picture?" She looked a bit taken aback this time, but again, no problem.
So here it is. This is the thing that's had me worried for over two weeks. You might be able to see a few tiny yellow spots to the left of centre (depends on how big the image goes for you). The bleeds are a little to the right, as tiny red dots.
Thanks to everyone that spoke to me about their experience of "that letter" before I went for my appointment today. I won't name you here, but if you're reading this, you should know who you are. Your support was really helpful. Thanks again.
Saturday, 5 March 2016
- Setting the scene with the new diabetes transition sample service specification –Jonathan Valabhji, Bridget Turner
- Engaging with young people in transition: tools and training for HCPs designed by young people – Heidi Forsyth, Scott Graham, Megan Lott, Lois Marshall, Gemma Thomson
- Trust, transparency and growing up together: a western tale – Neil Black, Athinyaa Thiraviaraj
|How does transition make young people feel?|
|What's going on in your life? Just this...|
|The speakers in the Transition session|
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.
Friday, 4 March 2016
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.
Thursday, 3 March 2016
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.
- It's education Jim but not as we know it - Helen Rogers
- Popping a pill - Kamlesh Khunti
- Running a mile - Naresh Kanumilli
- Improving paediatric outcomes: the Diabeter Experience - HenkVeeze
- Target setting: what's new in the NICE guidelines? - Julie Edge
- Blood glucose monitoring: Making the most of downloads - Iain Cranston
- My Diabetes My Way - Scott Cunningham
- Sugarbuddies - Sarah Woodward, Kelly Carden
- Setting the scene: a patient's perspective - Laura Cleverly
- Which target for which patient - Brian Frier
- NICE guidelines: Type 2 diabetes - David Millar-Jones
- NICE guidelines: Type 1 diabetes: a utopian fantasy? - Partha Kar
- Education plays a hugely important role in helping people with diabetes
- Diabetes is an individual condition and care has to be individual (linked to education above)
- Changes to care don't neatly adhere to a one size fits all strategy
|Relative risk of different complications vs HbA1c level|
|Aim for the left, you'll probably hit the right|
- "If we say to a patient that their target HbA1c is 6.5% but we don't expect you to get there, then should be surprised if/when they don't?"
- "If you pay GPs to hit specific targets, are they really going to set individual goals?"
- "You can't treat diabetes by guidelines. You have to treat the individual in front of you."
- "People with diabetes should be offered an education course with proven benefit.... well we do offer it - it's just no-one goes. Is 'offer' the right word?"
- "NICE guidelines says people with Type 1 should have access to a minimum of four test strips per day. Using four strips per day exists only in Narnia"