Tuesday, 15 November 2016

World Diabetes Day 2016

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

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.

Tuesday, 6 September 2016

Food Glorious Food?

I don’t have a good relationship with food.   I have to work harder at eating more than I do almost anything else.  I know that’s true for many  people with type 1 diabetes, and why wouldn’t it be? 

It’s a mental calculation every time we even think about putting something containing carbs in our mouths.  What’s my blood glucose now?  When did I last take insulin?  Do I need to correct?  How many carbs does this have?  Is it going to spike my levels or take a while to absorb?  And after all that, you either have to stick a needle in you or fish out your pump and dose appropriately.   That’s not a normal relationship by any standards.

My experience with food feels more complicated than that (if it’s possible!)  Four years ago, I weighed 215lbs (almost 98kg or nearly 15.5 stone).  I’d let my weight creep up and ignored what I was eating as long as I could get decent blood glucose readings.  This was less than 6 months after I’d somehow run the London marathon (weighing a lot less).  My reflection in the mirror finally persuaded me to do something about it and in three months I was down to 182lbs (83kg or 13 stone).

I’d always thought that losing weight was the hardest thing to do when you’re dieting, but actually maintaining any kind of progress really took it out of me and eight months later I was almost back where I started, feeling totally demoralised.  And so I did nothing about it for about 12 months.  Along with all the complexities that diabetes adds to eating, I started to view food as an enemy.  But of course the thing many of us reach for when we feel a bit low is food (because it’s delicious) and if you’re in a position where food is your best friend and nemesis at the same time, your relationship with it becomes more complicated.

Finally, something changed – I can’t remember what it was.  Another unflattering glimpse of my reflection most likely, coupled with a desire to change.  I’d entered another marathon and was determined I could run faster than my exploits over two years before.  I decided that actually losing a lot of weight would help me more than anything else.  Not lugging extra kilos of body fat around makes a big difference.  I embarked on a diet with a really strict calorie intake and a lot of exercise, and it worked!  I lost 45lbs (20kg or over 3 stone) by the end of the year.  It was hard work, but I actually felt good about myself for the first time in a long time.  I was at my lowest weight since I’d been diagnosed over 12 years previously, my blood glucose control was good (and I was running faster than ever too).

Now came the hard part – sustaining weight loss.  I’d tried once before and hadn’t managed it and I was determined to do better this time around.  I decided that I was probably at too low a weight to make sustaining it sensible in the long term.  I was eating around 1400 calories a day, running 20-30 miles a week plus other ad-hoc exercise.  I allowed myself a bit of a rise to keep some semblance of quality of life, but focused on what I was eating (and portion size too).

And it kind of worked for quite a long time.  Putting aside blips for holidays and Christmas, I managed a fairly steady weight for almost 18 months, eating pretty well, exercising regularly, and actually feeling pretty pleased (and dare I say, happy with my own body image).

Recently it fell apart again.  I had a running injury that stopped me exercising as much as I used to, which in turn pushed me back towards my comforter-in-chief… food.  A lot less exercise and a lot more food pushed my weight up at the start of this year to a point where I avoided the bathroom scales because I knew I’d hate the reading it gave me.  That reminded me of how I was with my diabetes about six years after diagnosis… I stopped testing because I didn’t feel in control of the results and I put it all out of my mind.

I know from experience that nothing good comes from that denial.  I felt (feel?) guilty about what I eat if it’s full of calories, but eating something like that gives me such a rush it’s hard to stay on track.  It’s almost like an addiction in some senses, and sticking to a plan of eating healthily requires an incredible amount of willpower.  Trying to convince yourself you don’t need one more hit of fat, sugar or salt takes a lot of effort.

My weight is currently back on the way down, and that feeling of control has returned (with my weight, and diabetes in general).  I feel like I can only operate at extremes though – full on culinary hedonism, or the strictest diet I can imagine.  Having a metabolism that seems to not need much fuel to keep the lights on doesn’t help either.   But even having lost 11lbs in the last month, I still look at my reflection and think I could probably lose a couple more…

I don’t think it’s easy to interact with food when you have diabetes.  I don’t know how typical my experiences are when it comes to the frustrations of balancing my intake with how I see myself.  I think as a community we talk a lot about managing the highs and lows of blood glucose (and the everyday aspects of diabetes), but we talk less about how food makes us feel… Maybe it’s because most of us don’t need to.  Or we don’t know how to.  I might be an outlier when it comes to managing food, but I suspect I’m not.

I’ve delayed writing this blog for a long time – mostly because I wasn’t sure I had the right words to express how it affects me.  That said, ‘guilt’, ‘denial’ and ‘frustration’ are words that are all too familiar when it comes to diabetes so perhaps they were there all along.

This blog also appears on the Diabetes UK blog site - you can read my most recent posts there by viewing my bio on their site

Monday, 11 July 2016

5000 Days with diabetes

Today marks a milestone for me.  It’s my 5000th 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.

Saturday, 4 June 2016

Let's Get Back On Track

I've neglected this blog for a little while.  Not necessarily because I don't have things to say, but because life's gotten in the way...

"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

Weight watching

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

Together, we will go our way

This is the 100th post on We Were Promised Hoverboards, and this time I'm handing over the reins to a couple of incredibly inspiring healthcare professionals.  

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.

It'd been a few years since I attended Diabetes UK Annual Professional Conference. I used to find some of the sessions interesting and helpful, but really I preferred other conferences for technical content and it was foremost a networking event and somewhere to catch up with colleagues. Last year I had the chance to attend just one day after several year’s absence. This one was different and it tugged on a heartstring. You see, in the last several years, in the last years of my training and first years of being a consultant, I had also changed.

What was different about #APC2015? It was people, people with diabetes were there. How was I different? The answer is the same as why I thought the APC was different: the relationship with people living with diabetes. So, what changed in me? Had I been a bad doctor? Had I a bad attitude? The answer lies in a question. My colleague, Athinyaa Thiraviaraj and I were asked this question by Dani @danianddanzel a few weeks ago. The two of us had been working together for more than 3 years by this time. We'd been slowly bouncing thoughts and ideas past each other in reaction to the vagaries and trials of diabetes care, whether that was in the acute setting or clinic.

Dani asked what had motivated us to make changes. Was it our patients? She guessed that we wouldn't have made the change otherwise.  As we responded together, all the thoughts and ideas that we'd been talking over the last few years crystallised out.  Athinyaa said she thought it was both a difficult and easy question. She agreed that we both knew who had motivated us - people living with diabetes themselves. 

My first thought was about insight, or self-awareness, a sense that things weren't going right in what I was trying to do for people.  I'd chosen this life, spent years studying, doing exams and practicing medicine. Surely, if anyone, someone like me should know what is important in diabetes care and the medical risks involved. Why couldn't the people I saw in clinic see that these things were important? Why couldn't I get this across? Even at the end of my training I knew that sense of failure was inside me; I was already realising that I wasn't getting through to people like I thought I should. 

As I became established as a consultant, after a year or two, I gained something that I did not have as a trainee: continuity.  In seeing people again and again, relationships began to build as I got used to people and they got used to me. As that happened, I could see that people living with diabetes had needs that were different from what I was giving. I struggled with that knowledge. I had felt a failure. I had to admit that before I could change. That's the most difficult part. Nothing can change without admitting that there is a problem. Athinyaa has been really clear that where we were now in our careers was a factor; we were now consultants and so truly owned our decisions. It takes an empowered clinician to believe in empowerment.

So what were the actual changes? We started listening. It was as simple as that. We listened to the person sitting in front of us in clinic, the person in the ward and even in the high dependency unit. Listening was simply that: actually hearing what the person wanted to say, giving space, allowing them to say what they wanted.  In active listening we showed congruence, we were in the room with the person, not thinking about their numbers and risks.  It allowed us to express empathy. In accepting what they felt important at the time, understanding how people actually felt and what they wanted we learnt more about them, as a person. Yes, numbers and risks were important to us as clinicians and maybe to the person talking beside us, but maybe ‘the numbers’ weren't top of the agenda for the person themselves at that time. Looking back, we both had respected people with diabetes before, but now we had begun to demonstrate that respect better. 

Listening was a main factor in the other great catalyst, the diabetes online community. We listened there for weeks and months before actively taking part. It has helped change us further, adapting our attitude, behaviour and language. We both found that the more we changed, the more rewarding it seemed for both the people living with diabetes we were caring for, but also for us as healthcare professionals. It was a win-win scenario. 

It is very difficult to make these changes.  Medical training schools us to listen, extract information as a clinical history, analyse it and come to a conclusion about diagnoses and management plans.  As Athinyaa is fond of saying, the clinician needs to put aside the 'fixer'. Life's problems don't have simple fixes, unlike medical problems. We defined the medical / diabetes problem on our agenda, but what about the person, what about what they valued and wanted? You cannot separate diabetes from someone's life. As I heard pointed out recently, if you hate diabetes, you hate a part of yourself. 
The change was that we were listening to the person. We were separating the person and the problem, leaving aside the medical problem and the 'fixer' and listening to the person. Setting aside the medical problem as we saw it, it left us able to hear them. In doing so, we moved away from the traditional directive model of care to a partnership with the person with diabetes. A vital part of this partnership recognises the person with diabetes as the Expert.   Our role is to be one part of the person’s wider support, adding our own knowledge and skills as diabetes specialists to theirs. And yes, this relationship based on trust is about mutual respect, but we believe that the healthcare professional must offer this respect to the people living with diabetes before deserving or expecting it in return.

The people who we saw in our clinic responded with impromptu feedback. This was part of listening rather than a formal survey. It also happened through the diabetes online community.  They said the experience was better.  While we strongly believed in this engaged supportive care, it was out of step with other colleagues. The feedback was important to us as we needed that encouragement to keep going. Every person with diabetes we have come in contact with, real and virtual, over the last several years has motivated us to change and adapt.

This was an organic change, to a culture of partnerships based on honesty, transparency, active listening and above all, unconditional positive regard. Now, we were not awful physicians to begin with, but to acknowledge our weaknesses and apply these principles in a focused manner meant we were able to enter into meaningful engagement with the person living with diabetes.

So what changed? Just us - as individuals and as a team.
Why did we change? For the people who trust us with their health, because they always come first



Monday, 28 March 2016

Libre - what do I reckon

I've been asked a few times (well, a couple of times), on Twitter what I think of the FreeStyle Libre so instead of sending a million tweets all at once, I've tried to summarise those thoughts here.  Remember this is just what I reckon* and bear in mind that at the time of writing, I've had a total of five weeks use out of their sensors.  For more thorough reviews over a much longer period of time, you should be reading Mike's blogs here.

* 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.
As with everything related to diabetes, it's all very individual.  You might end up with a reaction to the sensor adhesive (as I know a few people do), you might find it helpful where I find it frustrating (and vice versa), or may not find it 'accurate' enough.

I wasn't sure before I started using it but I think it was worth the cost of the reader and one sensor to understand what I was going to get from it.  If you can spare about £100 then I'd probably say go for it, just to understand what your experience is.  After that it becomes a more informed decision - you understand more about whether what you get is worth it for you.

Hope that's helped someone somewhere!

Saturday, 19 March 2016

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...


Friday, 11 March 2016

I wish

I wish that "what's my blood?" wasn't the first thing I thought every morning.  I wish that sometimes, waking with the all too familiar feeling of a dry mouth didn't set the tone for my entire day.  I wish that feeling light-headed at 6am didn't mean scrabbling around in the dark for jelly babies before I can have a shower.

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

Maculopathy and worry

I'm a worrier.  There - I said it.  I worry about things that I suspect most regular people don't worry about... I spend a fair proportion of my time convinced I've mortally offended someone, and that the sun might not come up tomorrow.

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?
So this morning I took my daughter to school and headed off to the eye clinic.  By this time, I'd had chance to talk to a few people who'd received similar letters and nothing had come from it.  Worry levels lowered.

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
It's basically chaos.  The whole thing is overseen by a receptionist with 10 different paper lists which she updates as people hand over their different coloured appointment letters (all whilst she's sorting some other problem out on the phone).  It's not welcoming in the slightest.  Worry levels increasing...

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.

The 20 minutes of purgatory you go through when waiting for the drops to work is a strange time.  Your vision gets gradually worse whilst you contemplate your vision getting worse.  It's also a time for people watching (the national diabetes sport).

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..."

"What now?"

"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.

Eye eye
"Nothing to worry about".... tell me another one.

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

Transforming Transition

Now I’ll confess I never experienced clinic transition – certainly not in the way we think of it today.  I was diagnosed with Type 1 in 2002 at the age of 21 and after the usual few appointments with my DSN, I was thrown into the all too familiar world of adult clinic – sitting down with a consultant twice a year.

At the time, I wasn’t too bothered.  I was 21, starting my post-grad course at university – for all intents and purposes, I was an adult, and despite the whirlwind of diagnosis, I managed OK…ish…at the beginning.

So what about actual transition for those diagnosed at a younger age?  How are they supported (and indeed how should they be supported) in moving from a paediatric clinic to an adult environment?  Happily, that was the focus of one of the best (and most inspiring) talks I attended this week.

The session was split as follows:

  •         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

The balance that this gave was great – hearing about how it should be done looking at the guidelines, then seeing two real world examples of how it’d been done, one from the viewpoint of people with diabetes, and one from healthcare professionals.  I don’t think it’s overly controversial to say that, whilst DPC is a conference for healthcare professionals, the sprinkling of patient voices throughout brought some of the sessions to life – this was no exception.

So let’s begin at the beginning – why is transition important?   This came across well in all the presentations.  Bridget and Jonathan spoke about how our brain can take up to 25 years to fully develop and so support during this period is vital.  They also spoke about how audit data suggests that young people with diabetes receive poorer care than others (and we know the National Diabetes Audit doesn’t show brilliant care for anyone with Type 1 in particular).  Continuing my unofficial #DPC16 theme, Bridget gave a great example of individual experiences of transition:

How does transition make young people feel?
Some of the other challenges included young adults starting university and letters being sent to wrong or old addresses, making it harder for people to engage directly with the service.  Some felt they moved clinics too early, others too late.  Another example of how care plans need to be individualised.

The team from Diabetes Scotland set out one of the clearest examples of why transition is so important, giving this list of what’s happening in young people’s lives between the ages of 16 and 25.  “Try adding managing diabetes into all that as well”

What's going on in your life?  Just this...

There were examples of some good experiences too (which is encouraging).  Those who’d been to defined transition clinics, had had overlap (and continuity of care) with paediatric and adult services or had experienced ‘guided independence’ (i.e. a transition group offering peer support and education) reported positive experiences of transition.  So there are pockets of good practice which is good.  So how can those be expanded?

The Diabetes Scotland team gave a great presentation on the Youth Engagement Toolkit.  They’d developed a set of tools to be used by healthcare professionals with young people in a transition environment.  They included a training day for diabetes teams that was co-facilitated by young people, case studies and videos to better understand young people’s experiences and a Facebook group (plus signposting to it) for young people with Type 1.  These aim to help clinicians build a better connection between themselves and young people, are treat the individual, not the condition.

One quote from the Facebook Group summed up the feelings of one of the young people: “I had no idea that groups like this existed, literally only found out about this group today during a clinic visit.  Nice to know everyone else has the exact same problems and deals with the same stuff, including having the complete fear about every single clinic visit”.  That idea of the benefit of knowing other people all have the same frustrations was something I touched on during my talk in the education session.

The pilot study of the toolkit showed that 97% of healthcare professionals who completed the evaluation thought the toolkit would be beneficial.  I got the chance to meet the team after, and the passion and enthusiasm that came through from the young people involved was clear to see.

Finally, Neil and Athinyaa gave an incredibly moving talk about “Growing up together”.  The simple idea was that while young people are growing up with Type 1, the clinicians too needed to grow their idea of what care in transition should be like.   The first transition clinics in their area came into being in 2007, and whilst they consisted of adult and paediatric joint reviews, “it felt more like two individual sets of care, rather than joined up transition”.

Neil gave a truly moving speech about how social media became the first catalyst for change, back in 2012.  Experiencing tweet-chats on diabetes changed his view on how people were actually living with Type 1 day in, day out.  He said “The power of the diabetes online community cannot be over-estimated” and I think it struck a chord with a number of people in the room.  Athinyaa spoke about what changed over the coming months, talking about how communication skills became a central point of focus.  Instead of asking questions like ‘how is your diabetes?’ or ‘let’s talk about your blood sugars’, conversations became centred on the individual… ‘how are you?’, ‘what would you like to talk about today?’.  Agendas were set by the young person rather than the clinician.

The idea of them as a team ‘growing up’ really came across so passionately, and the journey that they’d been on to learn how to move to deliver that individual care was clear to see.

The speakers in the Transition session

Transition can’t be an easy time for anyone living with diabetes, and whilst I never experienced that directly, a lot of the messages about how young people can feel totally disengaged with their diabetes really struck a chord with me.  It’s refreshing to see that there’s now a (non-mandatory) service specification for commissioners when looking at transition, and being able to hear about experiences from both sides of the appointment table was really refreshing.  I got to speak to everyone involved in the session afterwards and the genuine emotional connection they all feel with the topic had definitely inspired the room.  We know there’s lots of areas for improvement in diabetes care (not least transition), but I think it’s got a lot of focus and good things are coming.

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.

Friday, 4 March 2016

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.

Thursday, 3 March 2016

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.

Individual Care

This post is a bit of a mashup of a few different sessions that I attended on Day 2.  For the sake of consistency, today for me consisted of:

Janet Kinson Lecture

  • It's education Jim but not as we know it - Helen Rogers

Debate: Prevention of diabetes: Popping a Pill or Running a Mile
  • Popping a pill - Kamlesh Khunti
  • Running a mile - Naresh Kanumilli

Service redesign and attention to detail: can it improve outcomes in children and young people?
  • 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

Quality in Care (QiC) Diabetes
  • My Diabetes My Way - Scott Cunningham
  • Sugarbuddies - Sarah Woodward, Kelly Carden

Individualising targets in diabetes: NICE or not NICE
  • 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

There was a lot of variation in the sessions I attended, and a great many highlights (including Kamlesh Khunti arguing against some of his own research in the Prevention debate, and seeing some of the people I class as friends deliver some great talks).

But what's becoming more and more apparent the more talks I sit in are a few key themes that are common:
  • 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
What I'm going to try and do is bring in elements of both the Service Redesign and NICE guideline sessions to (hopefully) get across some of the ideas that make diabetes care challenging, both for people with diabetes, and for those delivering care.

The session on NICE guidelines in service redesign highlighted one very simple point - nothing is really that new.  The guidelines today and the guidelines from 1993 are markedly similar, though that doesn't necessarily make it easier for families to meet those guidelines.

What was clear (and came up in other sessions) was that taking the HbA1c guideline of 48mmol/mol (or 6.5% in old money) definitely won't work for everybody.  Evidence suggests that an HbA1c at that level will reduce your risk of complications - but again that  doesn't make it easy to get to, or appropriate for everyone.

Relative risk of different complications vs HbA1c level

Julie Edge gave a great archery analogy - make 6.5% the middle of an archery target (i.e. what you aim for), sometimes you might hit it, other times you won't.  The further away you are, the more you need to make adjustments.

But making adjustments and setting the targets is where it gets tricky.  The target can't be 6.5% for everyone (and nor should it).  Making adjustments when you don't hit the 'bullseye' needs support and help.  Interestingly, even aiming for a target of 6.5% may not help you - studies show that if you aim for 6.5%, chances are you'll achieve 7%.

Aim for the left, you'll probably hit the right
What people need is individual support to understand what's appropriate for them and what's achievable based on their current circumstances.

In the afternoon, the NICE Guideline discussion started to a packed room (and an overflow room listening in).  Laura began with a stark statement - "Some of the NICE guidelines have made me feel like I've been put in a box where I don't belong" and I think that made a lot of people sit up and take notice.

Working through some of the new guidelines, Laura explained that clinic appointments with her consultant worked through her circumstances and looked at what external factors were impacting on her outcomes (such as HbA1c).  A visit to her GP was different - "You need to improve your control".  A question at the end of her talk asked for her views on individual targets for the guidelines - the answer was a simple one "Yes there should be individual targets, and NICE guidelines encourage it.  But how often is it actually done".

Brian Freer followed and spoke well about how targets could/should be set for individuals, and at the end there were a few questions/comments from the audience:
  • "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."
There's a theme developing...

Partha took to the stage to talk about the practicalities of the Type 1 NICE guidelines.  He made some stark points that really should give food for thought.  He was keen to stress he wasn't criticising the guidelines but had some points he wanted to raise.

You could summarise his talk into a discussion of the language used in the guidelines.  
  • "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"
Partha rightly questioned the need for updated guidelines, asking if the last document hadn't made significant differences, why would the new one?  What I took away from what Partha said was that we know what the right things are, and the guidelines make that clear - they're grounded in evidence.

What needs to be better is the implementation of all this.  Writing the guidelines is a long process.  Making sure they contain proper guidance that will positively impact people with Type 1 (in this case) is no easy challenge.  But writing the guidance doesn't magically bring about change in how that guidance is translated to real world care.

Mike stood up at the end and spoke in response to Partha's session.  The one thing he said so passionately that resonated with the entire room was "I don't want you to tell me what's easy, I want to know what works.  If an HbA1c of 6.5% means I have fewer complications, I can understand how hard I have to work to get there.  How much 'better' is it and how much more effort is it to get from say 7% to 6.5%?  Then I can make that decision about what I think my target should be."

I think the theme of individual care has come across really strongly in many sessions in the conference already.  No-one I've heard thinks it's a bad idea - far from it.  There's a clear desire from healthcare professionals (and people with diabetes) to champion individual care.  We can't all fit into one box, we can't be given a one size fits all target.  We all have different support needs, we all have different requirements when it comes to how we engage with education.

The argument isn't about individual care.  The argument is about how we change the system to make sure that individual care is delivered to everyone with diabetes.