Woman: The Tale of a Wise Woman

There’s a commonly shared piece of visual humour which crops up on social media at this time of the year: an observation that if the new-born baby Jesus and his parents been visited by three wise women, instead of three wise men, they would have offered something more practical than Gold, Frankincense and Myrrh. It appears on images such as these:

Aside from the Mary, women are conspicuous by their absence from the Christmas story, although not from other events in the life of Jesus as related in the Bible. Whoever or whatever we perceive him to be, Jesus of Nazareth clearly held women in high regard, which is more than can be said for the religion espoused by most of his followers over the subsequent 2000 years.

So no wise women at the Nativity, other than in humorous cartoons? Well hang on, take a look at some Nativity scenes and there is indeed another woman in the stable at Bethlehem. I was looking the other day at the beautiful nativity figures used by my own Parish church, St Michael’s Kirkham, Lancashire, England. And there, next to the familiar Holy Family is another, unfamiliar woman:

Who is she? A discreet young woman, carrying what looks like a vessel of water, her head bowed as if to shun the limelight. Such a figure is sometimes depicted on nativity scenes, but not very often. The conventional interpretation is that she is the Innkeeper’s wife - although why not just a (female) innkeeper? There is no reference in the Bible to an innkeeper, and the invention of such a person and a wife probably owes more to the need to create parts for both genders in nativity plays performed by children.

Either way, this woman looks to be doing what women so often do: dealing with the practicalities of life while men make lots of fuss and noise without actually doing anything very useful.

So is this figure the elusive Wise Woman? Well, some have suggested that the Innkeeper’s wife in Nativity scenes is acting as a doula or even a midwife – bringing much-needed practical help, experience, reassurance and water to the cold and draughty stable, having earlier acted as a birth partner to Mary while Joseph fainted in the hay. The word midwife is derived from the old English Mitweib, meaning simply “with woman” (hence the fallacy of trying to change the gender of the word midwife to apply to male practitioners of the role), and the Innkeeper’s wife is certainly fulfilling the need for a female companion to the new mother – in the case of Mary, a young, unmarried, frightened refugee mother, coping with labour and childbirth in unimaginably difficult circumstances.

So perhaps we should refer to this female in the nativity scene as a midwife - but is she a wise woman? Well if we look at the French word for midwife, we can call her both a midwife and a wise woman. Look up the French for a midwife and you’ll see that it's the delightful term “sage-femme”. And what does “sage-femme” literally mean? Yes, you’ve guessed it - wise woman.

So there you have it. There may well have been wise men, possibly a whole gang of them (nowhere in the Bible does it say there were three wise men), but they arrived 12 days late and landed the refugee couple with some very nice but frankly rather useless perfume and jewellery. But all along there was a wise woman in the background, quietly helping Mary to recover from an uncomfortable birth and to look after her very important but vulnerable new arrival.

The Wise Woman, far left

We all know that one wise woman can often achieve more than a whole army of not-so-wise men.

I dedicate this tale to some very wise women: my wise wife, my two wise daughters and the many wise women whom I am fortunate to count as dear friends. We’d be lost without you.

And a song title? How about John Lennon's Woman his ode to the folly of men and the wisdom of women, released so poignantly just after his murder 40 years ago.

It's beginning to look a lot like Christmas

It’s beginning to look a lot like Christmas. You can say that again, albeit you’d be about a month late in saying it. The retail and hospitality trades have been trying to convince us it’s Christmas since early November at least, and in many cases much longer, and by the time we get to next weekend, and into December, our nation will be in full-on festive mode.

Our towns centres are already awash with Christmas lights, as high street traders seek to make the most of the first unrestricted Christmas in three years, and counteract the ever-growing threat of online retailers; our garden centres have all been transformed into “winter wonderlands” since early November, with barely a trace of a plant or a bag of potting compost until you’ve made it through the dazzling displays of lights and baubles and the animated Santas; and the airwaves and playlists will from December 1st, if not before, be dominated by the well-loved works of Slade, Wizzard, The Pogues, Chris Rea, Mariah Carey et al.

There's now a well established yet unofficial convention that December equals Christmas, certainly in terms of decorations and radio playlists - due, I think, to the ubiquity of Advent Calendars, which were relatively rare and chocolate free in my 1960s childhood, then the norm for any household with children since around 1980, but these days used by all ages, often featuring not just chocolates but other edible treats too. 

So for many, December 1st means Christmas has started. And yet…..it isn’t Christmas just because it's December. Christmas starts on December 25th and lasts until January 6th. This past Sunday was Advent Sunday, traditionally the start of a season of preparation and penitence, of restraint and reflection, ahead of the midwinter feast.

An Advent Wreath

Please don’t get me wrong or dismiss me as a religious zealot or killjoy: I love Christmas, not despite but because of its secular tackiness, cheesiness, over-indulgence, and excesses. It’s a treat for all of us at a time of the year which can seem very gloomy, but like all treats, it’s a treat because it’s rare and time-limited. I love Roy Wood’s I wish it could be Christmas every day but that sentiment is so very wrong. If it was always Christmas, it wouldn’t be special, wouldn’t be a treat and wouldn’t be fun.

Now of course in reality, we can’t pretend Christmas isn’t coming. If we are going to enjoy Christmas, we obviously need to celebrate and enjoy many aspects of it in the weeks leading up to it. Buying presents, sending cards, putting up decorations, planning menus, enjoying concerts, events and parties with our friends and colleagues is all part of Christmas, and clearly can’t be done on or after the 25th. 

But do we have to completely overlook the notion of a season of preparation, of Advent? The practice of a period of preparation and abstinence in advance of a joyful feast is common to many other religions, most notably in Islam, with Ramadan followed by Eid. 

Preparation, abstinence and reflection followed by celebration and indulgence is, surely, good for the soul. Or to put it another way, celebration and indulgence without some measure of restraint and context in advance of it is surely not good for the soul.

As a society, we have become very bad at waiting for anything, at any form of delayed gratification, and I plead as guilty as anyone to this. Fast Food, seven-day opening, same-day delivery and Amazon Prime mean that many of us have forgotten what it means to wait for anything. I grew up in the days of “allow 28 days for delivery”, which now seems like a joke. Who would wait 28 days for anything these days?

Yet waiting is, surely, good for us at times. A bit of imposed patience never did anyone any harm. It’s a given of good parenting not to give in to childrens’ every “I want”, not to indulge their every wish, for fear of spoiling them, yet we as adults perhaps don’t practise what we preach. We want it now? We get it tomorrow, thanks to Amazon Prime and some hard-pressed van driver. Convenient, yes, but seldom vital.

Religion has taught us to believe some pretty daft stuff over the years, and to an extent it still does. Christianity has a lot to answer for in terms of its being misused as an excuse for bigotry, prejudice and intolerance. Which is why I have always chosen to follow my religion at a safe distance, shamelessly taking the bits I agree with and rejecting those with which I disagree. And one of the bits of Christianity which I most appreciate is the way it gives a pattern and a rhythm to our lives which is so in tune with the patterns and rhythms of nature itself, if that doesn’t sound too flaky. By hijacking pre-Christian, pagan midwinter celebrations, Christianity taps into our need for some light and cheerfulness, “in the bleak midwinter”, and by encouraging us to wait patiently for the fun and festivity, rather than jumping the gun, it taps into a bit of useful psychology and self-discipline.

So instead of joining Noddy Holder in shouting “It’s Christmassss!” on December 1st, I would suggest that it’s more fun, and better for us, to enjoy Advent for what it is? 

Yes, I have already put up some decorations, but I always start with a few, advent-themed ones - just a few candle bridges in windows, an advent wreath with candles and an advent calendar - but I’ll leave other decorations until later in December. Yes, I will listen to seasonal music, but I’ll start with my Advent Playlist (click those words for the Spotify Link), which contains some simply wonderful and oft-neglected sacred music and hymns, plus, as is my wont, some secular songs that fit the season.

Then when Christmas finally comes, I’ll enjoy all 12 days of it, and I'll be saying "It's Christmas" until January 6th, when much of the secular world will have long since moved on and started eating Creme Eggs.

I’ve Gotta get a Message to You: mixed messages in raising awareness of diabetes.

It’s Diabetes Awareness Month, built around World Diabetes Day, November 14th - the birthday of Sir Frederick Banting, inventor of the insulin injection therapy to which those of us living with Type One Diabetes owe our lives and well-being.

Every November in this, the social media age, screens turn blue and people with diabetes spring into action with posts, blogs and images intended to “promote awareness” of diabetes. Amongst this torrent of awareness-raising material, there’s always good stuff, some entertaining, some serious. Eloquence, insight, seriousness and humour in plentiful supply; quite a mixed message, you might say. Read on...

“Awareness raising” is very much a thing these days: there’s scarcely a day goes by that isn’t a *insert condition here* awareness day, and as a result I’m pretty sure that we are all better informed about a range of medical conditions with which some, often many, people are living, and for which someone somewhere is campaigning, researching, supporting and often fundraising in an attempt to improve matters. 

But what does “awareness raising” mean? Is it necessary, and does it work? 

This presents two big questions: whose awareness are we trying to raise? And what do we want them to be aware of?

The answer to that first question is fairly obvious: It’s those who don’t have, or don’t know well anyone who has, the condition to whom we should be directing our efforts to raise awareness. Awareness and knowledge of diabetes, which is so common, remain worryingly low, and I for one am reluctant to get angry about this. I knew very little about diabetes until I developed it, and I am sure there are many serious and common conditions of which my knowledge is very limited because of lack of experience. So there is a continuing need for those living with diabetes of any kind to remind the world that this invisible condition is there, and that every single human being is at risk of developing it.

But what of that second question: what do we want those unfamiliar with diabetes to be more aware of? 

Well, I recently spent an evening catching up with a longstanding friend of my own age, whom I hadn’t seen in many years, and whom I knew well in the days before I had diabetes. Naturally, our conversation turned to the topic of my diabetes, and he watched with a mixture of incredulity and interest as I tested and injected ahead of our meal together. He was vaguely aware that diabetes involved injections, but had no real awareness of the two main variants of the condition, of what the healthy pancreas does in a person without diabetes and how those with the condition have to replicate its job, partially or fully. Above all, like many people, he had never really been made aware of the central paradox of Type One in particular: that an effective and life-preserving medication - insulin -  presents an ever-present and unpredictable threat to our day-to-day well-being which must be monitored, anticipated and reacted to, not by professional experts, but by patients themselves.

So all those posts reminding those who don't know diabetes just how difficult, time-consuming and draining it can be are clearly necessary, and the awareness-raising message is well worthwhile.

But what about that message? Is that really all we want others to hear? Do we just want to make sure that others feel sorry for us, make allowances and help raise funds to finance better ways of preventing, living with or even curing diabetes? I really don't think so. Self pity is not always a good message coming from those living with a serious yet perfectly survivable condition. Harsh, but true: what we actually need is a mixed message. 

Now in all other areas of life, “giving off mixed messages” is not a good thing. We crave and admire clarity, honesty and consistency. Yet time and again, from both my own experiences and those I read and hear about from others, I realise that if we are successfully to “raise awareness” of the complex and mercurial nature of diabetes, we need to give a message which is indeed mixed.

As I said in my TAD Talk back in 2017, diabetes is an enigma: on the one hand quite something, yet on the other hand nothing at all. It's something that demands our attention, sometimes fully, often partially, every single day of our lives, and means that even the most ordinary of activities - eating, exercising, driving, having fun - can only be done and enjoyed with at least half an eye on our diabetes. Yet it's also nothing in that it needn't stop us doing anything and enjoying it to the full, throughout a long and active life. 

So the message is mixed, and that message with all its inherent ambivalence needs to be understood. Which is why I acknowledge and value the voices of all those who advocate on behalf of those living with diabetes during this and every month. Some choose to accentuate the negatives, wanting to be sure that the rest of the world understands better the burden of diabetes; others choose to accentuate the positives, wanting to be sure that the rest of the world understands that diabetes is not a barrier to doing anything. We all react differently, so a variety of apparently contradictory voices and responses is both necessary and desirable.

I've just gotta get a message to you, as the Brother Gibb sang, long before the white suits, falsetto and fever. 

But that message is, quite rightly and inevitably, a mixed message.

We Can Work it out

I freely admit to being conflict-averse. Some would say annoyingly so. There seems to me to be so much discord, conflict, and argument, so many angry words and deeds in this world, that I see no possible benefit to me or to anyone else in picking fights, metaphorical or literal, with anyone, unless absolutely necessary.

Easily said and arguably complacent, I know: I am well aware that I am fortunate in having been born and raised in a stable family, and I enjoyed the benefits of a good education, leading to an enjoyable and safe career. I have also enjoyed the stability of a 38 years-and-counting marriage, blessed with three lovely and loving adult children. I am lucky enough to still live with two of them, and a fab daughter-in-law. I am also blessed with friends of all ages drawn from a life surrounded by good people. 

I therefore perhaps have rather less to be angry about than many in this far-from-perfect world.

However, it seems to me that there is a lot of anger around at the moment, both in a wider world which has become significantly more polarised and tribal in recent years, and also in the social media bubble in which I have chosen to spend some of my time in recent years - the one inhabited by (a very small proportion of the total of) people who live with diabetes.

I spent four days this week largely absent from Twitter and Facebook, having taken a short holiday staying with some old friends who live in deepest Norfolk in a house with unreliable Wi-Fi and intermittent 4G. I didn’t try to take a “digital detox”, but found myself confined to just an occasional look at social media (usually provoked by a notification when out and about), without the means easily to reply or get involved in any prolonged exchanges.

It turns out I inadvertently chose a good few days to take this unplanned break: returning home to a catch-up on my accounts, I saw much hostility, notably the justified but arguably excessive and misdirected anger about Paul Hollywood’s ill-advised “diabetes on a plate” quip from Tuesday’s Great British Bake-Off; a simmering row involving many about the nature and extent of the problem surrounding healthcare professionals’ use of language in talking to and about the people in their care; and finally a poorly-judged advertising campaign by Diabetes UK seeking to draw attention to the dangers posed by some of the potential complications of diabetes.

In all these cases, there is usually some merit in what is said on all sides, some justification for the anger, and some justification for the anger about the anger. What saddens me is the way in which the immediacy of our hyper-connected world causes such rapid, and therefore almost by definition, unreflective responses. And in that sense, I am grateful that my own unplanned absence from social media gave me the chance to sit back, watch and reflect, rather than piling in with my own, probably imperfect, words.

Social media, especially Twitter, is in many ways a megaphone in which those who say most, and say it loudest, can very easily be mistaken for the majority. It gives us all the means to chip in with comments which are potentially “heard” by 1000s, and it’s the easiest thing in the world to join in when you agree with something, even if in a pre-social media world you might have simply noticed, commented to those sitting with you, and moved on with your life. There are clearly many on Twitter who find it very difficult to say nothing, when often to say nothing is the most effective and powerful of all comments.

Then there’s also the pressure to make a post snappy and eye-catching, which inevitably leads to ever more extreme language. I am NOT defending Paul Hollywood, but was what he said really “vile”? Foolish, ill-advised, ignorant, yes, but not maliciously intended to hurt others. Not “vile” or “disgusting” as many chose to say. We all make mistakes and upset people, we all use words carelessly and cause hurt which we then regret: it's part of being human.

The megaphone of Twitter made sure that criticism of Mr Hollywood’s ill-informed quip made it into mainstream media, and quite rightly so, but the real villain of the piece was, as some rightly pointed out, the programme makers. I am sure that there is much left on the cutting room floor after an edition of GBBO or any similar programme is made, and it wouldn’t have taken a PR genius to spot the potential backlash to a diabetes joke.

Then what of the #LanguageMatters debate? I fully recognise that there is a continuing need for care and sensitivity to be used by HCPs in what they say to and about people with diabetes, but in my own experience of living with diabetes, I have never experienced anything beyond amused irritation at what people have said, and to be honest I have got better things to do than spend time calling out every single inappropriate word or expression used about me or others with my condition. In all areas of my life, I mind rather more about peoples’ manner and attitude, rather than what they say. The right words can be said, but the speaker may say them in a manner which betrays dutiful adherence rather than genuine empathy and concern. Just as when someone in a shop wishes me to “have a nice day” I am only impressed if their manner suggests they care about me as an individual.

I wonder how many people with diabetes or other conditions have genuinely been demoralised and demotivated by things said by HCPs? It’s very easy to adopt a reaction, having seen someone else’s, and join in the hue and cry.

It appears that “being nice” is not good enough according to some. But it’s not a bad way to live your life, and personally I think I’ll just try to be nice and hope others do likewise to me, knowing that I can’t please all the people all the time, but at least I tried. And if I’m angry, I’ll say so myself. But don’t hold your breath waiting.

“Life is very short, and there’s no time for fussing and fighting my friend” Lennon and McCartney often said some pretty profound things, so I'll call this post We Can work it Out

Little Arrows – Happy Birthday FreeStyle Libre!

If you have Type One diabetes, or someone close to you has has it,  just consider for a moment what an awesome responsibility it places upon the person with it: however well we are, we are at all times only one misjudgement away from being in serious and potentially life-threatening danger.  I don’t like to over-dramatise life with Type One, but I occasionally feel that those who don’t know Type One overlook how demanding it is. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive, yet threatens our day-to-day well-being 24 hours a day, every day. Our biggest and ever-present challenge is therefore making sure that a life-preserving therapy doesn’t become a life-threatening one.

And for us to be successful in responding to that challenge, self-monitoring is what we do. All day and every day, for life. So to me, monitoring, and responding appropriately to the information received, is the key to living well with diabetes.

I have a memory from my very early days of living with Type One diabetes, over twenty years ago: my wife and I were looking at a perfectly good blood sugar reading on my meter - probably six point something - and wondering whether I needed a snack before bed. She commented that it would be far more useful if we could know whether the level was rising or falling, rather than just what it is. At the time, having this sort of information at a glance was a mere fantasy for ordinary people, but my wife was in fact visualising something which would soon become a reality, thanks to the spectacular advances in technology which we are fortunate enough to enjoy here in the developed world. She was in effect seeing into a future when continuous glucose monitoring could become readily accessible to ordinary people with diabetes.

Five years ago this week, the FreeStyle Libre flash glucose monitoring system came to the UK, the start of a process to bring that life-changing support to the likes of me. So this post is to say: Happy Birthday, Libre!

It’s easy to forget the speed of progress in technology over the past 20 odd years. At the time of my getting diabetes (December 1997), the internet was still in its infancy. I had recently acquired my first mobile phone, and we had just bought our second family PC, but there was no sense that the functions of the two would so soon merge. The computer was very much a static desk fixture, and with the help of AOL and dial-up connecting (remember that noise?) we were for the first time experiencing the thrill of being so instantly connected to the world. Emails were a novelty, but there was no notion at that time that we would so relatively soon be using the internet to connect so instantly and profoundly with other people: Facebook, Twitter and Instagram were still some years from being invented and the internet seemed like no more than a giant encyclopaedia: a very useful one, but no more than that.

Moreover, mobile phones were still new and relatively rare among ordinary people, and again we never thought that they would be anything more than just a different way to talk to people remotely. Texting had been invented - almost by accident - as a way for telephone engineers to exchange messages. It was less than 25 years ago, but the world looked a very different place before we were all walking around glued to a screen.

So in the late 1990s, as I was getting to grips with two new “things” in my life, diabetes and new technology, they were not really linked in my mind. I was lucky enough to be diagnosed after the invention of insulin and a convenient means of delivering it, and of relatively convenient meters for measuring blood sugar from a finger prick. I would have been surprised and impressed to learn that around 20 years later, I would be checking my blood sugar level whenever I wanted to, without spilling blood, and that using the same phone that could read my blood, I would be in constant indirect and direct contact with hundreds of other people with diabetes, and following developments in the treatment of my condition. 

As I have documented before, I spent the first sixteen years or so of my life with Type One diabetes in relative isolation, and perfectly happy that way; I was too busy to do any more than what was needed to stay healthy and live my very busy home and working life, and unwilling to make a medical condition anything other than a minor inconvenience. Fortunately, it remained for me just that, and in many ways still is.

The advent of social media in the mid noughties changed a lot in our world, as has been endlessly analysed. For me, joining Twitter out of curiosity, followed by a rather casual and now forgotten search for anything relating to diabetes proved to be unexpectedly significant in terms of my relationship to diabetes and my management of it.

Within a year or so of my first tentative online interactions with other people with diabetes, I became aware of conversations about something called FreeStyle Libre, which was causing a stir of interest among the then relatively small online community. I was aware of the existence of continuous glucose monitoring, indeed I had in my early days with diabetes worn some sort of large, intrusive device, on loan for three days from the hospital, to investigate my tendency to night-time hypos and associated seizures. However, this primitive device was light years away from what became readily available only a few years later.

But with FreeStyle Libre came the promise of a small, convenient and - relatively - affordable way of answering that question which my wife had put to me a decade earlier, namely not just “what is my glucose reading?” but “What’s happening to my glucose reading?” With the help of a bit of googling, I quickly realised that this device might be just the thing for me, and I excitedly went to the website to get myself one for Christmas (2014). To my disappointment, I discovered that I was merely joining a waiting list.

It was whilst waiting that I had the good fortune to attend the first national meet-up of people with diabetes at Nottingham in early 2015, organised by the GBDOC. There, as well as the surreal experience of meeting in the flesh people to whom I had been “talking” for many months, I first saw the Libre in action, worn by Abi, Lyndsay and Pippa, who had already become online friends and were about to become good real-world friends.

The email inviting me to try #Freestyle Libre

A few weeks later, I reached the front of the Libre queue, and received my first sensor and scanner. I wasn’t disappointed: at the time, I was still working in that most demanding of jobs, teaching, in which it is very common to be “on the go” for ten hours or more at a stretch with barely time to go to the loo, let alone check blood sugar using a finger prick. To suddenly have the means to check blood sugar quickly and discretely, and to know whether the resulting reading required action or not, was life-changing. The resulting ability to keep my glucose levels closer to the ideal, rather than constantly erring on the high side, as had been my habit in order to cope with that busy life, resulted in an almost instant improvement in my HbA1c level, which has been maintained ever since.

And the rest has been, well, my recent “history”: I was keen to share my enthusiasm for this revolutionary device and said good things about it on Twitter, as well as writing about it on this blog - my first post, in fact. I was contacted by someone from the manufacturers, Abbott, to ask if they could make a promotional film about my use of it on my busiest working day of the year, A-Level Results Day, of which I am still rather proud:-

Adrian Long's FreeStyle Libre Story

My 5 minutes of fame on Sky News

I was very keen to try to do my bit to ensure that this device became available to those unable to afford the £100 a month cost of sensors, and so set about using what little influence I have to support the campaign to get sensors added to the NHS tariff.  Less than two years later, in September 2017, I found myself on live TV on the morning of that campaign reaching the end of its first phase, with the announcement of the forthcoming availability of sensors on the NHS.

It wasn't all sweetness and light, of course. The inevitable backlash was quick to set in, even on that day back in 2017. Bloggers, vloggers and tweeters were quick to point out their own reservations about the system, with some condemning Dr Partha Kar who had championed the cause, for his espousal of what they saw as  imperfect technology and a waste of NHS funds. I particularly recall one sarcastic tweet on that very morning showing an image of one user’s faulty sensor reading, captioned “can’t wait to get this sort of accuracy on the NHS”. There was much ill-informed criticism of the Libre’s alleged inaccuracy compared to finger prick tests, and some armchair critics were far too quick to magnify their own unhappiness with the system into generalised condemnation of it. Most of these critics have now gone rather quiet, their noise drowned out by the 1000s of people with diabetes and parents of children with diabetes whose quality of life has been significantly improved by this little device.

6.5 with downward arrow:
so much more information

The FreeStyle Libre isn’t for everyone, but it has proved to be a massive help for many, and by far the most cost-effective way of helping 1000s of people better to understand what happens to their glucose readings, and so better to manage this mercurial condition. Yes, it isn’t “accurate” in that it doesn’t give a definitive reading of the current glucose level (but neither does a finger prick test - try doing two tests on different fingers!). Yes, it doesn’t (yet) warn of an impending hypo. Yes, sensors do very occasionally fall off before the end of two weeks. But to know the direction of travel of blood glucose is a hugely helpful innovation.

But the fact remains that many of us are now far better informed about our condition than we were without this information, and there is already powerful evidence from impartial and well-informed sources indicating that lasting longer-term benefits are starting to accrue.

My own pleasing stats,
after a few years of Libre

I would be remiss of me to post this piece without including acknowledgement of the significant contributions by so many to the success story that is FreeStyle Libre: the team at Abbott and in particular Jared Watkin, who led the original research team behind Flash Glucose Monitoring; the many innovative and forward-thinking doctors and nurses, led by Professor Partha Kar, who did so much to push for rapid and widespread adoption of flash monitoring; the NHS, who with overall commendable speed recognised the longer-term health and cost benefits of the device; the diabetes charities, JDRFUK and Diabetes UK, who recognised the value and potential benefits to patients and campaigned accordingly; and last but by no means least, the diabetes patient community. The Libre was launched in the full gaze of a rapidly expanding online peer support community and there can be no doubt that its success and growth was driven in no small measure by online content: blogs, vlogs, tweets and groups. Once its value had been established, the campaign to get it onto the NHS prescription tariff was conducted to an unprecedented extent on social media, driven by an alliance of HCPs and users, notably Nick Cahm, whose relentless gathering of prescription data did much to help equalise access.

Prof Partha Kar, Nick Cahm & me

A piece of plastic the size of a £2 coin stuck to your arm and a smartphone have certainly changed the lives of many. And those Little Arrows truly tell us a good deal.

Anyone remember that song?

Disclosure: Whilst I have no official affiliation to Abbott Healthcare, manufacturers of the FreeStyle Libre system, I have been invited by Abbott to participate in their international DX events for people living with diabetes from across Europe. 

These events serve no promotional purpose and at no time have I, or other participants, been asked to promote the FreeStyle Libre or any other Abbott products.

"Someone saved my life tonight": who invented injecting?

It’s been a while since I posted anything new on my blog.

For a start, I've had a very busy 2019 in various unrelated ways, and a summer spent outdoors working in my garden has left little time for keyboard musings.

But perhaps more sadly, I have felt somewhat disinclined to share too many thoughts online, when having in June attended an event* for people with diabetes from  across Europe, sponsored by a medical device company, I witnessed an outbreak of online criticism levelled against “bloggers” and “advocates” (neither are terms that I warm to or identify with - I’m just a person who enjoys writing and was encouraged by others to share my thoughts online)

It's easy to overstate the levels of antagonism, but it is nevertheless sad to find oneself attacked by strangers for taking opportunities in good faith, enjoying them and aspiring to use them for the greater good, or for just sharing thoughts that others might enjoy reading. It was equally sad in late June to see similar criticism levelled at a number of HCPs and people with diabetes who had been invited to a reception at 10 Downing Street, hosted by our T1D (former) Prime Minister. Again, there was discourtesy and insensitivity on display, but I was encouraged to see the supportive voices eventually outnumber critics in a big way.

So I have kept relatively quiet over the summer, leaving blog posts and GBDoc tweetchats to others, but thought it was perhaps time to share some thoughts that I was invited to deliver to a small group of people with diabetes (interestingly, many drawn from the Instagram diabetes community, which to an extent exists in a separate bubble from the Twitter and Facebook ones) at an event* organised by BD needles last Saturday, to assess their starter packs for people starting injection therapy.

So read on for a post adapted from my talk, as a committed MDI-er, on the continuing importance of injecting, together with a bit of history of this easily taken for granted therapy.

I have lived with my unwanted friend Type One diabetes for almost 22 years, as many readers will already know: I developed the condition at the end of 1997, shortly after my fortieth birthday, and have been fortunate enough to live well with diabetes throughout the subsequent years.

Among the reasons for this is the online diabetes community, which has brought me so many new friends and opportunities in recent years. Like many others, I have learned and shared more about diabetes in the past six years than I did through “official” channels in the first sixteen.

However, any online community can falsely magnify things, including the voices of those who choose to talk a lot. One of the things that the online diabetes world most magnifies and therefore exaggerates is the role and extent of technology in diabetes management. 

Perhaps because the community is mainly the province of younger people (I use that term very vaguely, meaning perhaps the under 40s), it can seem as if most people with Type One use an insulin pump and some form of continuous glucose monitoring system, and indeed that many of them are technophiles, busy working on DIY closed loop systems.

Through my online interaction with other Type 1s, I have seen and heard much about the benefits of pumps and DIY closed loop systems, and I warmly applaud those who have driven progress in this area. But it’s not for me. The fact remains that I, and 1000s like me, are highly unlikely to be offered an insulin pump on the NHS, and quite frankly, I remain unconvinced that the potential benefits are significant enough for me to bother pursuing the matter.

The reality is that the overwhelming majority of the UK’s 400 000 people with Type 1 (and a significant number of those with Type 2) are treated with multiple daily injections: the surprisingly vague national figures put the overall number using a pump in the UK at around 10%, with huge variations according to age group and geographical area.

Arguments rage about access or lack of it to this technology, but the fact remains that for the foreseeable future, injections will be the means of delivery of insulin for the vast majority of us. So some very rough mathematics suggests that every day in the UK something between 1.5 and 2 million insulin injections are administered, the vast majority of those done by the patients themselves - people with no medical qualification.

It’s mind-blowing when you stop and think about that: up to 2 million instances every single day of a life-saving, yet potentially dangerous and easily fatal substance being injected in homes, workplaces, shops, schools, parks, on trains, boats and planes, in cafés and restaurants, on barren mountain tops and on busy city streets, at all hours of the day and night. There’s a heck of a lot of injecting going on out there, much of it discreet and unseen.

So it’s pretty important that we get it right!

Injecting has a pretty bad name. For most people, it has associations with immunisations at school or with drug addicts in bus shelters. Anyone with diabetes has experienced ridiculous comments along the lines of:-

“Oh gosh, you are brave, I couldn’t stand injecting myself”

To which we wearily respond:

    “Erm, I think you would if the alternative was a slow and lingering death”

Like anyone, I wasn’t thrilled when back in January 1998 I discovered that I would be sticking a needle in myself several times a day for the rest of my life, but of course you get hardened to it, usually in no time. However, far from fearing injections, I soon came to value them, and have never really had any issue, physical or mental, with administering them. But what do we know about injecting insulin?

Well, whilst we rightly honour Sir Frederick Banting for his discovery of insulin therapy in 1924, perhaps we should also salute Irishman Francis Rynd, Frenchman Charles Pravaz and above all Scotsman Alexander Wood.

Francis Rynd

Charles Pravaz

Alexander Wood

Who? Well, whilst the concept of injecting (forcing liquids through a narrow tube) dates back thousands of years (there is evidence that the ancient Egyptians knew about it), it is these three scientists who collectively are responsible for the invention of the hypodermic syringe in the mid nineteenth century. This was less than 200 years ago, so we shouldn’t take that for granted any more than insulin itself. I hadn’t heard of them until I started doing a little research, and I bet few readers will have heard of them. Click on their names above and Wikipedia will tell you more.

Injections of various kinds are familiar to all of us, but of course familiarity breeds contempt, and like almost anything that we do repeatedly and continuously, we who inject multiple times a day become careless, take shortcuts and stray from what we were taught as the ideal way of doing things. I have written about this in a previous post.

At the risk of sounding like a repentant sinner at an American evangelical convention, I have to admit that I am less than assiduous in following all of the generally accepted guidelines, and occasionally neglectful of the entire lot. To my cost?

Well not exactly, but since learning more about lipos (thanks to my lovely HCP colleagues on the FIT Board), I have been carefully avoiding over-used sites, and guess what? My insulin sensitivity has improved and my requirement has fallen, both quite significantly!

I genuinely think that Lipohypertrophy is the Cinderella of diabetes issues. We PWD and those who care for us are all so bothered about avoiding hypos, dealing with the uncomfortable highs, pursuing elusive “flat lines”, over-reacting to the TMI that many of us now get from our Libres and CGMs, that we overlook the insidious damage that we are doing to our too-easy-to-reach tummies. And judging from my own experiences and what I hear from others, checking our injection sites and advising on injection technique are a frequently missing part of our consultations with HCPs in clinic.

Perhaps it’s time we all started to think rather more about injections. Whilst for those who don’t have to do it regularly, injections are a rare and somewhat intimidating experience, for those of us who do it multiple times daily, it seems almost too easy, taken too much for granted. Perhaps we should all pay more attention to to  technique, site rotation, size of needles etc. For example, I spent the first 20 of my 22 years with diabetes using the 8mm needles that were the norm back in 1998, blissfully unaware that current thinking among HCPs is that 4mm are best for everyone, regardless of their BMI. And whilst my eyes are screened annually, my feet jabbed at every visit, questions asked about my “control”, my highs and lows etc., nobody has ever asked about, let alone examined, my (frankly less than alluring) midriff.

So there you are: I stand before you a longstanding disciple of injecting and a born-again advocate of good injection technique. May I publicly thank my friends on the FIT Board for their wise guidance and friendship, and I hope that we will perhaps all resolve to move good technique just a little higher up the agenda.

And let's remember, “Someone saved my life tonight”. Well actually several someones have  helped save our lives: as well as Banting, let's hear it for Messrs Rynd, Pravaz and Wood - the unsung heroes of diabetes care?

There you go, there’s always a song title! Thank you for reading.

Disclosures: 
In June 2019 I was invited by Abbott Healthcare to DX Lisbon, a gathering of people with diabetes from across Europe. My travel, accommodation and subsistence was paid for by Abbott.

In September 2019 I was asked to speak at Shaping BD, an event in Birmingham to assess an education pack for people starting on insulin injections. My travel and subsistence was paid for by BD.

Never forget where you've come here from: 100 years of the Long Family

As those readers who follow my Twitter or Facebook accounts will perhaps have seen, I organised and hosted a remarkable family reunion on the Easter Sunday just gone, gathering almost all the living descendants of my late grandparents, Rev'd Walter Long and Amy Denby, who were married exactly 100 years previously, on April 19th 1919. There were forty people present, aged 1 to 87, representing four generations of Longs - here we all are:-

The event, held at Exeter College Oxford (where five descendants, including myself, have studied as undergraduates) was a great success, and although very much a private affair of interest mainly to those attending, there has been much interest and comment from others, such that I thought it worth publishing what I said on Sunday as a blog post. Those who attended can then read what was said, and others, if interested, can learn something about an ordinary couple from East London who lived good lives and raised a lovely family.

So here is my speech, with a few photos to add some context:-

First and foremost, thank you for being here! Forty people from four generations; one child of the marriage, all nine grandchildren, eighteen great grandchildren and two great-great grandchildren. Eight of us here today were present on a similarly sunny day in April 1969 in Warwick for the Golden Wedding. Here we are back in 1969...

And here's the same crew 50 years later, attempting to recreate that image, although changes in height made it difficult...

There are photos of that which most of you will have seen, and I have just about got over my resentment towards my late mother, who made me and Chris dress formally on a day when everyone else of our generation looked cool and casual. I NEVER wore that wretched short trouser suit again. But it was a lovely day, still quite clear in my mind and it is a huge pleasure to see this still growing family gathered here today, fifty years on.

Diabuddies and first cousins-once-removed
 - me and Elinor 

Let me share a story of how today’s event came to happen: it all started back in February 2018 with a meeting in a noisy bar off Fleet Street in London between me and Elinor Crawley, my first cousin once removed. How we came to be in that bar is a long story relating to she and I being members of a small and exclusive club which we neither of us chose to join - people with Type 1 diabetes. 

In telling Elinor a bit about our shared family history, it dawned upon us that we were approaching the centenary of Walter and Amy’s marriage. The following day, I had arranged to visit my cousin Miranda for lunch and so I shared our realisation about the upcoming centenary with her, and we decided it was an event worth marking with a family reunion.

So here we are, and in case I forget, let me thank Elinor and Miranda for their support, and of course my wife Sue for all the work she has done to help make today happen.

I have been doing quite a lot of digging and researching about Walter and Amy in recent years: I guess it’s an age thing, but with a bit more time on my hands, the stimulus of the TV programme Who do you think you Are? and the ease of online research, it quickly becomes absorbing and enlightening to learn about your family’s heritage.

And although of course we’re all biased, I have to say that by any standards, Walter and Amy were an extraordinary couple, whose story, and that of the generations since, tells us much about the social and economic history of the past century or so.

Most people these days like to claim authentic heritage from the wrong side of the tracks: like the four Yorkshiremen in the famous Monty Python sketch, many folk are fond of talking down their own privilege and talking up their working class, poverty-stricken credentials.

Well rest assured, Amy Denby and Walter Long have impeccable salt-of-the-earth credentials. He was certainly no champagne socialist (he was famously t-total for a start!).They were both born in London’s East End, on the same street in Bermondsey, she one of four children of a tie cutter, he one of twelve children of a wire worker.

Both families had in the previous generation come to London from the countryside: by far the most eye-catching ancestor is Walter’s grandfather, the splendidly named, and even more splendidly bewhiskered Amos Buckle, a shepherd from Wescott in Buckinghamshire. Amos was one of the first recipients of the newly introduced old age pension in 1908 - I have a picture of that event. 28 of us here today are descended from this gentleman, and I for one am very proud to say so. There are 100s of more distant cousins out there if you look on Ancestry.

Amos Buckle

But back to Walter and Amy: that they both knew the harsh realities of working class life in the early twentieth century there can be no doubt. Yet both individually and as a couple, they transcended their humble beginnings without ever forgetting them and through their long and successful marriage fostered the diverse inheritance which is met here today.

They were married on Easter Saturday 1919, at the College Chapel in Stepney Green, East London. 

The Baptist College, Stepney Green (Chapel on right)

The college and its chapel have long since been demolished, but the portal still exists, enjoying listed status yet now totally overgrown with weeds, standing behind security fencing alongside one of the key intersections on the still unfinished Crossrail line. I visited the site a few weeks ago, and found it weird to think I was standing where, 100 years ago, that newly married couple had stood. Sadly, there appears to be no photo in existence of their wedding.

The College Chapel Portal

However, I do have in my possession several boxes of papers and photographs relating to Walter in particular: far less material relating to Amy, but I guess that’s the way it was in that generation - she was very much the supportive Minister’s wife, often alongside him or in the background on photos, yet those of us who remember her as a mother or grandmother will I’m sure share my view of her as a pillar of wisdom and unshakeable good humour.

Walter Long in his prime

Walter’s life is by contrast documented in great detail, and he was truly a remarkable man: not so much a minister of religion, but rather a social worker in a dog collar. Studious and self-educated, gregarious, affable yet slightly stern when necessary, he touched the lives of hundreds whilst raising a family which has gone on to reflect so many of the diverse values which he espoused throughout his long life.

Mr Pastry

His work for almost forty years with the Bell Street Mission in London’s then severely deprived Marylebone district is what stands out, and only the other day I found a very recent entry on an internet a page of memories of Bell Street which fondly recalled Mr Long the Minister, whom the children nicknamed Mr Pastry - do a google image search and you’ll see why - he bore a strong resemblance to the comic character of that name.

The holiday home in Bognor Regis which he set up and helped build took inner city children for seaside holidays of which some fabulous ciné footage survives and is on a DVD I have made. He was a Labour councillor on Marylebone Council for many years, and the Crematorium there in which both his and Amy’s funeral were held was very much his project.

He espoused many causes: unitarian christianity of course, but also pacifism, internationalism, abstinence from alcohol, animal rights and above all a very pragmatic brand of socialism.

"Trust Baldwin"
- Walter didn't

Beyond the facts there are many stories, no doubt exaggerated and improved over time, on which Chris and I were brought up. Among our favourites are that he graffitied a famous Conservative poster from the 1929 election campaign changing it from “trust Baldwin, he will steer you to safety” to “trust Baldwin he will steer you onto the rocks”; or that he heckled Ramsay McDonald, whom he saw as a traitor to the Labour Movement, at a rally to such an extent that a flustered McDonald turned to an aide and said “Who is this man?”

He was a man of principles, yet was also by all accounts a skilled operator who knew how to make friends wherever it was expedient to do so. He befriended engine drivers and persuaded them to make an extra stop behind his allotment to save him the long walk to Wembley Park station; he was skilled at getting extra petrol coupons during the War, on the grounds that he needed them for his essential pastoral work.

But the best story, which I so hope is true is from a visit to Greece which he made in the early 1930s: on presenting his passport at customs in Athens, the official inspecting it looked concerned on reading the page labelled occupation, disappearing into a back office then re-appearing with his superior, who pointed at the passport and said in broken English:

 “You Minister of Religion?

“Yes”, replied Walter.

“McDonald’s government?”

“Yes”, replied Walter, still unaware of what the problem was and thinking that the official was just showing off his awareness of British politics.

“One moment please” said the senior official, asking Walter to sit down.

A short time later, a chauffeured limousine appeared and Walter was invited to sit in it, accompanied by the official, and it was only as he was taken on a guided tour of the city’s sights and churches that he realised that the Greek officials had assumed that he was the government minister responsible for religion. Apparently, he didn’t let on, claiming he didn’t want to cause further embarrassment, yet enjoying his free trip round the sights.

If that sounds a bit dishonest he was also disarmingly honest: he loved his cars, and was more than once stopped for speeding: on one occasion, quite late in his life, he was stopped in a 30 MPH zone by a policeman who asked the elderly clergyman in his Morris 1100.

“Would you mind telling me how fast you were going sir?”, asked the officer, expecting the usual attempt to get away with it by saying “about 33 MPH”. Instead of which, Walter, gloriously oblivious to the speed limit said “Ooooh, fifty or sixty at least!". The cop was so nonplussed by such honesty that he let him off with a friendly warning, especially when told that the reason for speeding was that he was on the way to a hospital visit.

Amy, Ronald, Walter, Arthur - 1921

So yes, a top man, a top couple. It is right and proper that we are all meeting here today to celebrate their lives. And lest I dwell too much on stories, possibly apocryphal, of what he got up to, let us above all remember today a loving couple who raised four children against a background of troubled times, and who embraced the post-war world with grace and enthusiasm, being for us loving and generous-minded grandparents.

Perhaps we should be toasting their memory with a non-alcoholic drink, but let’s quietly forget that for today. 

Please join me in raising a glass to 100 years of a good, long story and in particular let’s drink to those 1919 newlyweds - Walter and Amy.

And now can I ask their surviving son Peter, as the oldest here present, to cut the cake which Miranda has commissioned for today's celebration:

Please take away your cake and also your wedding-style favour: this contains a piece of paper impregnated with wildflower seeds for you to plant, and some words, almost certainly written by Walter himself, which were read at his funeral:

Unto my friends I give my thought.

Unto my God, my soul. 

Unto my foes I give my love. 

These are of life the whole.

Nay, there is something - a trifle - left: 

Who shall receive this dower? 

See, earth-mother, a handful of dust! 

Turn it into a flower!

What lovely words! I hope we will all go home with fond memories and a renewed sense if togetherness.

I hope family members will enjoy reading the words that they heard on Sunday, and others may find something of interest. If you're a reader of my blog posts, you will know that I always give them a title from a song and post a link to it. This one gets it's title from a Take That classic from their early years - Never forget where you've come here from. 

https://youtu.be/uDe2tvD_nCo