You can't always get what you want

When I first started posting my thoughts as a blog, back in 2015, I started using song titles - or occasionally lines from song lyrics - as the title for each post. It happened almost by accident when I was writing my very first post, about the then new and very rare FreeStyle Libre blood glucose monitoring device: the words of a song came into my head, and I thought it would make a good title. That post - entitled What's Going On? - is still there, now of course very outdated, but in a very good way.

These days, it's often the other way round: a title or line comes into my brain as a result of something that's happening in the world, and thoughts start to swirl around in such a way that I end up expressing them in writing and usually publishing them on my little corner of the internet. Read on to find out how this title - You can't always get what you want - became a post.

My blog has always been about more than just diabetes, but the condition with which I live, and which has brought me so many friends, opportunities and experiences, remains a recurring theme, not least because the world of diabetes care and treatment has moved on so much over those six years. There's always much to talk about.

This week brought the announcement by NICE of proposed guidelines and a consultation on the future availability of closed loop systems for people living with Type One diabetes in England. It stimulated a frenzy of comment and opinion, ranging from excitement and gratitude to anger and resentment and all stops in between. Once again, I found myself somewhere between amused and dismayed by the speed with which people felt it necessary to broadcast their views to the online world. Not least when the announcement was of proposals, not policy, with an invitation to comment. An invitation to comment: online, privately, and thoughtfully, having read and considered the proposals.

We live in an age of instant and therefore necessarily less than reflective opinion, driven by the platform of social media where so many strive to be heard. By the time I'd read just a few of the torrent of responses, I had already started to feel that I must be a freakish loner in wanting to give the proposals some thought. Until I remembered that those expressing the most strident and immediate views are almost by definition a minority, and that tens of thousands of others are probably unaware of the announcement or too busy living their lives to be able to join the chorus of opinion. 

It’s the negativity that really gets me down. We've been here before, of course: 

I remember a taxi ride back into Central London in September 2017, after being interviewed live on Sky News on the day that FreeStyle Libre was added to the NHS tariff, and reading through dozens of negative comments about that decision, spiced with suggestions that the likes of me or indeed Partha Kar were paid by Abbott to promote this product. Most comments boiled down to “Yes, but what about...”, overlooking the universal truth that all progress, all change for the better, comes in stages, not overnight. Partha repeatedly used the “tip of the spear” analogy to restate his point that this was a marathon not a sprint, and that progress and evidence would generate further change, price reductions and hence wider benefit.

Then this time last year, we had a similar furore over the news that FreeStyle Libre 3 would not be as readily prescribed as Libre 2. Again, the misplaced sense of entitlement, and the consequent rage, was baffling.

After all, we're only 7 years on from the arrival of Libre, and progress has indeed been remarkable. Flash or CGM is now, with one or two shameful exceptions, the norm for people living with T1D in the UK. It has taken just five years from a fortunate few paying £100 a month for Libre 1 to everyone with T1D getting at least Libre 2 or other devices like Dexcom or Libre 3 according to need and at no cost at all to the patient.

So the other day, these wise words, from the Rolling Stones, came into my head:-

You can't always get what you want

You can't always get what you want

You can't always get what you want

But if you try sometime you'll find

You get what you need

Check out the song here - it was actually the B-side of their iconic 1969 hit Honky Tonk Women, but has achieved far greater fame and acclaim over the subsequent half century.

Why these words? Because we now have the prospect of pump with closed loop connection to CGM - a de facto artificial pancreas - for those who need and want it. Do we all want it? Possibly, but not necessarily. Do we all need it? Arguably, but at what cost relative to other demands on diabetes care and the NHS in general? Another huge step forward in diabetes care and treatment, but one that comes with a cost, and therefore with decisions to be made regarding who gets it and who doesn't. Hence the frenzy of excitement this week, but also a disappointing amount of negativity.

Surely, before we all start with the “What abouts” we should pause to reflect, and to keep a sense of proportion, fairness and context to this news. Loop and CGM for more than a favoured few is wonderful news, to be welcomed, celebrated and shared, not least by those who have lived through years of far more primitive methods of insulin delivery and blood glucose monitoring. But we must, now more than ever, remember that this massive improvement to care has a cost, a cost to us all as taxpayers, and that this cost must compete with other growing demands on NHS funds. Assessments of need and decisions, sometimes hard decisions, will have to be made, both theoretically and then in practice: there will be winners and losers. We must surely place need before want, not the other way round.

Take me: I have an Hba1c well below the proposed threshold of 8. I am doing fine on MDI, not least because I have the luxury of being retired and therefore having the time and headspace to devote to keeping my levels in reasonable range.  So whilst I might want management of my diabetes to be easier and more automated, do I need it? Right now, no, I don't, and I'd happily see my £6k of closed loop funding go into the pot to improve diabetes education courses, to increase HCP pay or to speed up cancer diagnosis.

 

I can think of many others living with diabetes whose need is greater than mine. Busy working people with no time to constantly check levels and correct; pregnant women and nursing mothers with 1001 other stresses and strains on mind and body; children and teenagers with raging hormones and lives to live, fun to be had and worries to be addressed; older people with additional mental or physical disabilities or challenges on top of diabetes. The list goes on. I even happen to think that the need of basic flash monitoring for many living with Type Two is greater than my need for a pump and a loop. If we think hard and selflessly, and with due regard to financial realities, the need of others may well be greater than our own want. 

So before I start sabotaging my own blood sugar levels in order to raise my Hba1c to above 8, so as to qualify for a pump, I shall gladly stand back, rejoice in the progress of recent years, thank those who have driven it, and remember that as so often in life, what we need is often considerably less than what we want.

Jagger and Richards wrote some very wise words as well as some of the greatest ever riffs....

Everybody Wants to be a Cat - or maybe not

Everybody wants to be a Cat - a Disney favourite from The Aristocats, loved by successive generations, and rightly so. A great song, a classic animated sequence, but is it true? Does everybody want to be a cat? Of course not, but it works well as a title for some thoughts on how those of us with a hidden medical condition portray it, both in the real world and online.

It is often said that cats are good - too good perhaps - at hiding their symptoms. It’s a survival strategy for a solitary species, as opposed to those who live in groups, herds, packs or other groupings. To show weakness is to encourage predators, such that the cat that walks alone prefers to keep its troubles, pains and discomforts private - a poorly cat will often be found hiding somewhere as if hoping nobody will notice. However, those species which live in groups may make more of a fuss, perhaps even looking for sympathy with the proverbial hangdog expression. We human beings, of course, have a choice, and according to our personality type, we may react to illness or disability by quietly withdrawing from interactions with others, or by making it something about which we are loud and proud, a dominant or even defining part of our persona.

So it is with diabetes, and with the growth of social media-based communities such as #GBDoc, a more visible divide has become apparent between those who portray their diabetes as a defining part of their identity, and in many cases a burden to be borne; and on the other side those who portray it as a nuisance alongside many other nuisances in life, but not something which they will allow to dominate their thoughts, words and deeds.

Social media has brought these contrasting attitudes into clearer focus. Some accounts of people living with diabetes flaunt their condition with pride and defiance, detailing their every success or failure, sometimes railing against the curse of T1D, and maybe raging against society's ignorance, or health care professionals' insensitive ignorance. On Twitter, these people are often those who choose a user name featuring a reference to diabetes and have a profile picture or bio that leaves nobody in any doubt that T1D is a big deal for them.

Other social media accounts of people living with diabetes carry little or no clue to their owner's medical condition. The giveaway is often just whom they follow or friend, or maybe just a passing reference in their bio. Their feed may well be about anything but diabetes, or just an occasional reference to it. Their Twitter name is less likely to reference diabetes.

To pursue the animal analogy, the former group are the diabetes pack animals, and are likely to talk frequently about their diabetes, both in real life and online, whereas the latter group are the solitary creatures, the cats if you like, who prefer to keep their condition private and who consequently seldom draw attention to it. Like most divisions, it’s not binary, and most of us have a nuanced attitude, sometimes wanting the world to know that we live with this damn thing and sometimes wanting nobody to know.  And above all, there are no rights and wrongs - just differences. However, my sense is that nearly all people living with diabetes of any type tend towards one type or the other. So which am I? A cat or a dog?

Well I am very much a cat. No surprise there, given my lifelong love of cats, so this post is about being a cat - hiding an already hidden condition.

Today is my diaversary. It was at 5pm on this day in 1997 that I went to see my GP, alarmed by a sudden recurrence of symptoms after I'd recovered from a week in bed with ‘flu. She had asked me to bring a urine sample and I can still picture her concerned and somewhat puzzled face as she told me that it revealed very high sugar levels, and probably diabetes.

I've told the story many times: it actually took several weeks for me to be diagnosed as Type One; back in 1997 it was still widely believed that Type One very rarely came on in adults: we now know very much otherwise.

Twenty Five years. A quarter century. One third of the average male lifetime. Most significantly for me, more than half of my adult life. So it's a day for much reflection, and indeed a blog post. There's much to think over, and whilst in many ways that dark and chilly December evening when I was told that life-changing news remains very clear in my mind, in other ways it seems like a very different life in a very different world.

Over those twenty five years, my attitude to diabetes has varied, and in particular the level of noise that I make about it, has varied due to circumstances as much as anything, but overall I have always tended towards saying less rather than more. As mentioned above, in diabetes as in all else, I want to be a cat.

Over the first 16 years or so, through very much the peak of my working career, diabetes was firmly in the background of my life, my concerns and my interactions with others. My diagnosis came at the end of a week off work confined to bed with ‘flu, but that was the last day off for sickness between then (1997) and my retirement 20 years later. (Other than routine appointments). So living with Type 1 had no impact whatsoever on my working life, indeed less than four months after diagnosis I was leading a group of 45 teenaged schoolchildren on a week-long school trip to France, as I had done for years before and continued to do for years afterwards. I remained the same busy person that I had been before T1D came to join me on my journey through life, and I often reacted with wry amusement rather than boiling anger as I watched others - notably work colleagues - moan about how busy and tired they were, or how much they were struggling with whatever short-lived ailment was troubling them. Very occasionally, I would drop the T1D bomb into a conversation or situation, as for example when a colleague was planning a day of interviews in which I was involved, and he said to me “It’s going to be a full-on day, with no time for eating” When I gently suggested that I would have an issue with that, he sheepishly remembered and re-jigged the schedule a little.

Outside work and home life, I also avoided diabetes and anything other than strictly necessary talking about it. I joined the British Diabetic Association on diagnosis (sounds so archaic now, but that’s what Diabetes UK was still called back then), and then ignored a series of letter invitations to local group meetings, not least because the subjects of their meetings were always about low-carb eating and getting more exercise, a clear sign that this was predominantly if not exclusively frequented by people living with Type 2.

However, the world of diabetes care and management was on the threshold of very significant change at the time of my diagnosis, and has come a long, long way in those years - as those whose lives with Type 1 predate mine will readily attest. Whilst by 1997 we had already reached the era of disposable pens and needles and electronic blood glucose meters, we were still two decades from the near universal availability of non-invasive glucose monitoring, and indeed the rapid advance in the availability and use of lightweight insulin pumps and closed loop technology. Yet the Rise of the Machines was already under way by the time I joined the ranks of the pancreatically challenged, and although I am not among those who are desperate to have the benefits of an insulin pump rather than MDI, I have from the very start been convinced that the quantum leap has been the ability to measure blood glucose levels without finger pricking: I was one of the earliest adopters of FreeStyle Libre back in 2015, and with Libre 2 now the norm, I am free from the fear of unforeseen hypos which was a genuine worry for me for the first 20 years or so. I was fortunate enough recently to be given a two week trial of Libre 3*, and whilst I remain unconvinced of whether I need or want a full CGM to remind me every minute of every day what my levels are, I can well see that this latest version is a state of the art which will be welcome by many and will sooner or later end up as the norm.

Equally striking when comparing 1997 and 2022 is the impact of the revolutionary advances in connectivity brought about by the internet. The birth of the World Wide Web is rightly quoted as 1992, but it was not until the late 90s that the internet started to reach ordinary homes on a large scale. We got our first internet connected PC in early 1998, but at first the internet was really just a giant online library. Emails were there from the start, but they were really just instant letters. The notion of real-time “conversations” with friends and family across the world would have seemed fanciful, and for me, any sense that ICT and the web would be of any significant connection to my new condition would have seemed very odd.

Yet for me, like many others, it was online connectivity that brought me out of my diabetes closet and connected me for the first time with fellow Type Ones. It’s a story that I have shared before, for example here and I have no hesitation in saying that connecting with others living with Type 1 was a life-changing move, which has brought me connection with 100s, friendship with dozens and a close and lasting bond with a few.

And yes, online diabetes connections and friendships are all about the sharing, and therefore only really of any value if those involved are prepared to talk about their condition, at least in some small way. From around 2013 onwards, I did indeed start talking about diabetes with others, and as a result became aware of the rapid advances in diabetes care and technology that were at that time starting to proliferate.

And yet……

I remain a cat. I remain a man of relatively few words in any setting, real world or online, and especially in the context of diabetes. My regular social media feeds only occasionally feature diabetes content, and my Facebook is a largely diabetes-free space. I sometimes think I should be more vocal, more of an “awareness raiser” or even a so-called advocate, but my heart just isn’t in it. Others clearly feel more strongly about it, and have more to say, whereas for me, the core of my relationship with this lifelong condition is that it is a nuisance, rather than a burden, that I will not allow to take over my life. To rant and rave about it seems to me to be a largely futile exercise, in which I would either be preaching to the converted or risk becoming a bore.

I am enormously grateful to and hugely respectful of those who define their persona so much by diabetes. In so doing, they are being generous and beneficial to others: we would not be nearly so far down the road to accessible diabetes technology for all according to their needs and wishes, nor would we have anything near the levels of camaraderie and peer support that we enjoy, without the efforts of those for whom diabetes is a big deal.

I certainly have no wish or intention to shy away from the diabetes community, indeed I interact with others living with Type 1 every day, and my best friend is a fellow Type 1. Yet outside the world of the diabetes community, I seldom if ever remind others of what I live with. Sometimes to my cost.

So when it comes to sharing my condition, I am a cat, whilst gladly accepting that not everybody wants to be a cat. I conclude this “Silver Diaversary” piece with a sincere thank you to all the individuals and organisations whom I have encountered as a result of that life-changing diagnosis twenty five years ago: healthcare professionals, diabetes charities, medical tech companies and above all diabuddies. I may be a cat, but as all cat lovers know, our feline friends do actually crave and appreciate company and attention. They're sometimes just too stubborn to admit it....

Illustrations? Well it had to be a throwback to the days when "#OfGBDoc" was a thing. This was a collage of cats belonging to GBDdoc folk which I made back in 2017/18. 

I am aware that some of those kitties are no longer with us, so I hope that the memories are warm and not too sad.

*  #ad #sponsored: I was given a FreeStyle Libre 3 sensor free of charge for evaluation purposes. The opinions in this post are my own and were not influenced or reviewed by Abbott.

Let it be: why we don't need a general election right now.

Politics is a subject supposedly best avoided in polite conversation, and I tend to avoid it on social media. However angry we are about people, events and decisions, it serves little useful purpose to vent about it online, not least as most ordinary people live in social media echo chambers where we mainly see posts by people with whom we agree.

However, although blogging has gone out of fashion, I still enjoy reading others’ thoughts when expressed on the often more considered and restrained platform of a blog, and I also enjoy forming the thoughts that swirl in my head into a coherent whole, so I am committing some strongly-held views which have come to my mind over this week for this new post. As always in matters political, there will be some who agree, and some who don't.

So here we go - on the day that our third Prime Minister in two months takes office - October 25^th, 2022…..Why we don’t need an election right now.

I am not, and never have been, a Conservative voter or supporter. I nevertheless prefer to keep my political opinions and comments for the ears of family and closest friends only, but sometimes there are exceptions, and right now is one of those times.

Like many like-minded people, I have despaired over the past five years at some of the individuals and policies that have been inflicted upon this nation by successive Tory governments which are hostage to right-wing English nationalist factions and which bear no resemblance to the traditions of Conservatives at their best.

It is easy to react to the recent chaos with angry calls for the peoples' voice to be heard, and to elect a Labour Government at this point might seem like an attractive solution. However, it would do the Labour Party no favours were they to gain power thanks to the weakness of their opponents rather than because of their own strengths.  They remain a work in progress after some years of misguided folly, and a strong opposition which is a believable alternative is an essential part of a well-functioning government. Labour may soon be just that, but not right now, not least as they would face exactly the same economic mess that is facing the present government.

In the end, a period in the political wilderness is good for either of the main parties, giving it time for the inevitable recriminations before eventually coming to their senses. The past forty years have seen both major parties spend years in opposition because they have reacted to electoral setbacks by lurching to their own extremes: Labour has done it twice, in the Michael Foot years and then the Jeremy Corbyn years, wasting golden opportunities to shape the country for the better in so doing. Labour’s disastrous spell under Corbyn was a classic case, and is in many ways directly responsible for inflicting this present government upon us. It was patently obvious that Corbyn was unelectable against the background that led to the 2017 and 2019 elections, and a more inclusive Labour Party led by one of its “lost leaders” - (Ed Balls, Yvette Cooper, Alan Johnson, the other Miliband, Andy Burnham, or even Keir Starmer) could have defeated the Tories in either of those elections before the car crash of a hard Brexit became the disastrous long-term consequence of Cameron’s decision in 2016 to try to solve his party's problems by asking the electorate to vote in a referendum on an irreversible policy.

The Tories have, since 2015, done serious and in some cases irreparable damage to the country which I love, and part of me wants to see the Tories out of office until, like all parties eventually do, they come to their senses and return to the centre ground which is where the overwhelming majority of Britons stand.

However, I do NOT want a General Election right now.

Firstly, because, like millions of others, I just want some political and financial calm and stability. I want some peace and quiet. After the chaos of recent times, with the lazy amoral leadership of Johnson followed by the astonishingly inept non-leadership of Truss, we now have as Prime Minister a young British Asian man who has the look and sound of a serious, capable and hard-working leader. His speech on taking office today was characteristically measured and serious: realistic yet reassuring.

Whether we admit it or not, we already owe Mr Sunak a debt of gratitude for instigating the long overdue departure of Johnson, not to mention for his shrewd management of government finances through most of the pandemic. I have no idea whether he will make a good PM, but at the very least he appears to behave like a grown-up leader, not an opportunistic clown (Johnson) or an incompetent zealot promoted way beyond her ability by the votes of a few thousand deluded party members (Truss). I really don’t care that Mr Sunak is a millionaire, or that his wife is, as long as he can steer the country clear of its present financial perils. Being a millionaire does not necessarily make you uncaring about those less fortunate than you are.

Secondly, because to demand an election now is futile. The Tories have a large majority - a mandate for a party and a set of policies, not an individual, and their MPs would not in the near future dream of voting down their leader in a confidence vote. Turkeys don’t vote for Christmas.

Thirdly, and in many ways most importantly, because to demand an election represents a fundamental misunderstanding of our parliamentary democracy. At a General Election, we vote in constituencies for representative delegates, most of whom belong to a party, and the party which achieves a majority of seats wins the election. We do not vote for the party’s leader, even though of course our choice is heavily influenced by the personality and policies of the leaders, but the Prime Minister is not a President. He or she is the person whom the majority party chooses as its leader, by its own choice of system, be it right or wrong. And the party with a parliamentary majority can change leader as often as it wishes to, as has been the case more times than many would care to admit.

Believe it or not, no British Prime Minister has arrived and left office through a General Election since Ted Heath (1970 - 74). That’s a remarkable statistic. Of the subsequent PMs, seven have resigned whilst still in office (Wilson, Thatcher, Blair, Cameron, May, Johnson, Truss) and seven have taken up office without an initial public electoral mandate (Callaghan, Major, Brown, May, Johnson, Truss, Sunak).

The gradual elevation of the position of Prime Minister to a quasi-Presidential status is, in my opinion, one of the most regrettable features of British politics in recent years, and is a process undoubtedly fanned by mass media and by both opponents and supporters of incumbent PMs. Of course we cannot and must not deny the primacy of the office and the importance of a good leader, and in the mass media age it is inevitable that TV debates have replaced local hustings and soapbox speeches as the main source of our views on potential leaders.

However, to assign every government decision to an individual is just plain wrong, and risks giving the individual more importance than the office deserves. Johnson played up to this, and people lapped it up in a manner that I found cringe worthy. Those who love him and those who loathe him constantly refer to him as “Boris”, thereby creating a personality cult which plays into the hands of a man who relies for his appeal on a carefully crafted persona of some kind of lovable buffoon, when in fact he is a lazy, amoral opportunist with no sense of duty. I have always pointedly referred to him as Johnson, because he doesn’t even deserve the respect of a title like “Mr”. The new PM is Mr Sunak, not “Rishi”. Politics is, as he himself has said, a serious and professional business. Surnames, please.

So yes, in two years’ time, the people can, and will pass judgement on this Conservative government, and they may well decide that after what will by then be 14 years in power, their time is up. But in the meantime, the opposition would be well advised to get on with fine-tuning their policies and making themselves look like a government-in-waiting, and the government should be left to attempt to clear up the mess left by a pandemic, a war and its own idiotic decisions, under what I truly hope will be Mr Sunak’s shrewd, assiduous and serious-minded leadership. Give the man a chance.

So no election yet, please. Let's leave things as they stand, give King Charles time to get to know his second Prime Minister and let Mr Sunak have a chance to prove that he can indeed unite the country by deeds as well as words. And give the rest of us a break from politics, politicians and political correspondents.

Those who know my blog posts will be aware that I always give them a title from a song, so I leave this one with a title from the words of wisdom of the Beatles, or rather of Paul McCartney’s mother Mary: Let it Be. 

We Don't Need No Education? I think we do, and we also need exams.

 

After a gap of three years, I have in recent weeks been back doing my post-retirement job as an invigilator of GCSEs and A-Levels at the school where I taught for my entire working career.

It's nice to be back: a taste of the teaching vibe which I loved so much, but it's a strange and in many ways deadly boring way to spend a working day - pacing up and down a hall full of young people, trying to strike a balance between ensuring that they are actively supervised yet not disturbed. No squeaky shoes, no phone notifications, only whispered and strictly functional conversations with fellow invigilators, and nothing to do except watch the clock ticking along. For the candidates, a two hour exam flies by, whereas for the invigilators time crawls. However, it's been nice to see this (admittedly less than fun) piece of normality returning to school life.

Almost everyone is familiar with the strange and stressful routines of school exams, but if you haven't been directly or indirectly involved with them for a few years, you might well be startled by how much more complex and regulated they have become than was the case a generation or two ago.

Exam security and fairness of access have made the organisation and execution of exams into an incredibly demanding logistical exercise for all involved, and I thought it worth drawing attention to what goes on in schools of every type and size during these five weeks or so – as well as, on a more limited scale, at other times of the year. I hope that in doing so I can help to foster added respect and understanding for all involved in the process.

Let's start with the students. Well nearly all of us have been there and done that. We all have memories of sitting in those rows of desks, 1.5 metres apart, with the sun shining outside and hay fever season peaking such that everyone is either sneezing, being disturbed by others sneezing, or both. We remember the invigilators pacing up and down like prison guards – in the past they were familiar teachers, but these days they are more likely to be outsiders recruited just for this role. We remember the ticking clock, the aching hand, the annoying desk that wobbles, held steady by a folded piece of paper, the distant sound of a playground as exams cut across the school day and its breaks, the occasional disturbance caused by a delivery van or  a teacher outside the room forgetting it's exam time and shouting to a colleague.

And above all, we remember the panic as we leaf through the question paper and see the topic we were hoping wouldn't come up and did – or the silent “yesss” as the one we revised only yesterday pops up. And we remember the uniquely focussed chatter as we were released from the gloomy hall into the sunshine outside, all comparing reactions and hoping that even the bright kids would agree that “Number 7 was impossible”.

It's all so familiar to everyone over school age. However if you're over about 40 and not involved in a school you'd be amazed at what now has to be monitored and what is and isn't allowed. A photo id card must be displayed on each desk. All writing must be black. Pencil cases must be transparent. Mobile phones are banned from the room, as are watches of any kind. Drink bottles must be transparent  and have the label removed. Walls must be free of any written material which might help in any way. Toilet breaks are discouraged, but if taken must be accompanied by an invigilator as far as outside the toilet. A prolonged stay in the loo would render the candidate under suspicion of malpractice. All this in the name of fair play.

Secondly, spare a thought for the invigilators. As already mentioned, these days they are an army of people, often with an oblique connection to the school: my invigilator colleagues at present are a delightful crew: retirees like me from this and other schools; part-time non-teaching staff redeployed from their usual roles; off-duty school nurses; a semi-retired doctor; the adult son of a teacher earning a few extra pounds to supplement his student loan; or just friends of the exam officer who were persuaded to help out. All of us have had to undergo DBS checks and take online training for the invigilator role, and are required to follow all the rules listed above, whilst also presenting to the stressed out students an air of supportive, empathetic yet suitably strict supervision. Not an easy balance to strike!

Let's not forget the teachers! These days, they are not allowed anywhere near their own subject exam until it's finished, yet most are nearly as nervous as their pupils: “did I get it right when I suggested there would be a question about topic ‘x'?” “Was that twilight revision session last week helpful?” “Will the clever but lazy ones have crammed it all in at the last minute?” “Will the hard working ones who really struggle get the breaks they deserve with the questions we've practised?” Some confident and conscientious teachers want to see their pupils after the exam, but others may understandably hide in the staffroom.

And what about the markers? Only those who have done it know what a tough and poorly paid gig that is. Again, it's changed beyond recognition in the past decade or so. Markers are a hidden and highly qualified army of current and former teachers, stay-at-home parents, retirees, or ambitious newcomers to teaching seeking added insight into the assessment process. These days, virtually all exam papers are scanned (hence the compulsory black pen), digitised and marked using an online platform which helps markers to add up totals and, in many subjects, ensures that different questions are marked by different people. Markers' work can be, and is, remotely and anonymously sampled and standardised by team leaders and senior examiners. The proverbial “rogue examiner”, a mythical ogre created in peoples' minds to explain away a poor grade, does not in practice exist any more, even if s/he did ever exist. Marking requires sustained attention to the task in hand over many days and weeks. And it does not pay well: nobody is in it for the money alone.

I leave the best until last: examination officers:  in many ways the most put-upon, under-appreciated supermen and women in the whole process. Every school or college has them, sometimes combined with another role, sometimes not.

Back in the day, EO was a job often done by a teacher, either a senior figure as part of a managerial/leadership post or a junior as a deserving incremental point on the pay scale. These days, it's almost always a non-teaching post, one for which there is no formal qualification but which requires a list of qualities and competences only found in a few individuals. S/he must have strong admin and ICT skills, limitless patience, physical stamina, kindness, tact, firmness, adaptability, creativity, problem-solving skills, and anything else I've forgotten.

The challenges faced by EOs are many, varied and unpredictable. During exam season, they are often the first to arrive on site and the last to leave. Having already ahead of each day arranged rooming, invigilation, seating plans, secure storage and recording of the arrival of papers, they then have to fetch all that day's papers (often well into double figures  on any given day if a school does both GCSEs and A-Levels) and check, count and assign them to the correct room. All this must take place within a secure room, with the papers kept in double-locked filing cabinets protected by keys held in a separate safe. Papers must be checked off by a second pair of eyes, who must countersign for all papers, and once out of the safe, they must stay in the hands of the EO or an invigilator at all times until they get to the exam room. Only then can they be opened.

And it's not just a matter of sitting a whole cohort in one big hall, as was once the case. If you haven't recently been involved with school exams, you would perhaps be startled, reassured or even slightly jealous of the concessions and arrangements made to ensure a fair chance is given to all. Students with a variety of reasons for such a concession will be given the chance to sit their papers separately in a smaller room, including some who are granted 25% extra time (if they have a formally diagnosed SEN need such as dyslexia), and some who are allowed to work on a laptop (again with a formally diagnosed need). Any laptop used must be supplied by the school and have access blocked to anything other than basic offline word-processing.

Likewise students with certain medical or mental health conditions may also be allowed to take the exams in a smaller group or an individual room, and may be allowed rest breaks. This applies, for example, to students with Type One Diabetes who are permitted rest breaks to test their blood sugar and administer correction injections or pump dosages when required. The current (June 2022) Coronation Street storyline of a girl with Type One taking and cheating in her A-Levels failed to recognise this reality in order to make a good story.

All such concessions require exam officers to facilitate separate, quiet, secure rooms in already crowded school campuses, and to find separate invigilators. Packs of exam papers have to be opened under secure conditions then resealed in separate envelopes. And at any time, with no notice, exam boards can and do send inspectors to spot check that all such conditions are being fully met.

Another complication is where a student has clashing exam papers in the same session. When this happens, one paper must be taken out of the published time slot, and the candidate kept under constant supervision between the papers, to avoid him or her either hearing or divulging the content of a paper sat out of sequence. Again, a significant logistical challenge for the EO.

And the EO fields all the problems or hitches: if a student gets upset or disturbed during an exam, then the EO will deal with it. If a parent complains about any aspect of the exam, the EO gets the email or the call. And when results get published in August, s/he will oversee the logistics of distribution of those, and deal with the huge and growing burden of requests for re-marks.

And nobody thanks them, gives them cards, boxes of chocolates or bottles of wine, as happens for teachers at the end of term.

So yes, exams are back after Covid. Students are stressed, especially the hugely unfortunate Year 13 cohort of 2022, who are taking A-Levels having never had the practice of GCSEs. For all their weaknesses, exams do, by and large, deliver fair results, develop valuable transferrable life-skills and form an integral part of most advanced education systems. But I hope that this brief and personal insight has given those whose lives are only fleetingly touched by exams a sense of the many challenges that they pose, in addition to the burden on those who sit them.

“We don't need no education” sang Pink Floyd's choir of North London schoolchildren in their iconic anti-school song, Another Brick in the Wall (Part Two) from 1979. Well actually they did need some education if they didn't recognise a double negative when they saw one. A glorious song nevertheless which will serve, suitably modified, as a good title to this post. We do indeed need an education, and exams are a necessary evil. Please, however, spare a thought for ALL involved in this colossal annual enterprise.

 

You'll Never Walk Alone - the forgotten pleasures of a collective experience

I see no value to me or to others of writing for writing's sake, so my blog posts, like those of anyone else who cares more about quality rather than quantity, have become fewer in number over the years. On many topics I have penned my thoughts and see no point in saying the same thing again in a different way, or in saying what others can say more effectively than I can.

So whilst I never think “What shall I write for my next post?”, every so often a set of thoughts forms so strongly in my head that I feel that I must commit them to the written word while they are so strongly held in my mind, and having committed them to writing, it seems silly in the age of online connectivity not to share them, even if only a few ever read them.

So here we go...with a post inspired by a football match but actually more about the joys of collectivism, and the inestimable harm that the Covid 19 Pandemic threatened to do to us as a species. If that sounds like a contrived and pretentious leap of reasoning, I apologise. However I hope that some will identify with what follows….

Yesterday evening, Saturday 7^th May 2022, I had the good fortune to be present at one of the true cathedrals of the beautiful game, Anfield, the home of Liverpool FC, for a crucial fixture as the English Premier League approaches its seasonal climax. A generous friend of mine, who has hospitality seats at Anfield, had two spare places for a pre-match meal in the Centenary Suite followed by a crunch match against Tottenham Hotspur, and he texted me a couple of days ahead of the game to ask if I and one of my family fancied joining him. For my son Nick and me, this was a gift horse not to be looked in the mouth.

I'm a lifelong active football fan, with memories stretching back to crumbling windswept terraces of Burnden Park, the home of my hometown team, Bolton Wanderers, where as a schoolboy I would pay my 15p admission and cheer on my heroes in white, then as now plying their trade in the lower tiers of English football. Supporting Bolton has brought many highs and lows, and in the not-too-distant past there were real highs, when in the first decade of this century Nick and I never missed a game as our team established itself as a Premier League force and evolved into a highly successful outfit, with Sam Allardyce attracting mavericks and misfits from world football like Jay Jay Okocha, Ivan Campo, Youri Djorkaeff, El-Hadji Diouf, Fernando Hierro, Bruno N’Gotty and Nicholas Anelka. Such superstars all bought into Big Sam's style and values such that for several years the team punched well above its weight in the League, and during the early 2000s, we saw most of the world game’s superstars at the Reebok. Moreover, the big teams were quite often sent home humiliated and outclassed by a Wanderers team that at its best in 2004-2005 mixed sublime artistry with bruising pragmatism.

Heady days indeed, but Wanderers' decline into the lower leagues, plus other commitments in my life and that of my family, have led to a decline in the number of matches that we attend, then the pandemic has meant that I hadn't been to a live match in over three years. So to be thrust back into the experience with a surprise trip to a top-of-the-table clash between two of the legendary teams of English football represented a quite stunning return to a forgotten pleasure.

The pre-match buzz is better at Anfield than almost anywhere because the modernised and expanded stadium still rises like a temple from the midst of the terraced housing of the city whose name it bears. However wonderful the newly built stadia such as the Emirates, the Tottenham Hotspur Stadium or even Bolton's still futuristic Unibol, there is something special about Anfield, approached along residential streets with street corner pubs crowded with raucous fans. I'd forgotten how good that pre-match buzz is, as it assaults the senses with sounds (distant chanting) sights (pilgrim like fans dressed in club shirts or colours) and smells (burgers, onions and beer)

But nothing prepared me for the emotional impact of the moment we emerged to take our place high in the Sir Kenny Dalglish Stand. I've been to hundreds of matches over a period of over fifty years, at many of the great venues of football: Maine Road, Highbury, Old Trafford, Wembley old and new, even Marseille’s Velodrome, as well as Burnden Park and the Reebok/Unibol, and many times to Anfield. But not for a few years, and not since Liverpool’s current team has reached such excellence under Jürgen Klopp's charismatic leadership. I was unprepared for the impact of hearing “You'll Never Walk Alone” sung on a perfect spring evening beneath the lights, and even though I was there as a neutral, it was impossible not to join in with those truly inspirational words set to that soaring melody. What must it feel like as a player to hear that choir of 45000 singing with such gusto?

The game was a 1-1 draw, not a classic, not a goal fest, but a chance to be reminded of the stratospheric standards of the players now gracing the EPL. The likes of Kane, Son, Van Dyke, Salah, Henderson, Alexander-Arnold, Thiago and all the rest make even the premier league stars whom I watched a decade or so ago look slow and pedestrian. The modern game, played at bewildering speed on a pitch that looks and plays like snooker baize, is light years away from that which I watched on the rutted sandy mud heaps of the seventies. Live TV does a great job, but comes nowhere near to conveying the grace, pace, speed of thought and lightness of touch of the modern game. These men ARE worthy of their eye-watering wages, because people show up in their thousands to watch them, just as others pay to watch film stars and musicians. Exceptional talent is box office. And when a team of mercurial talents like this Liverpool side is led by Klopp, a man of such manifest human qualities, including a sense of proportion, the result is compelling. I genuinely believe that Klopp is one of the most impressive human beings in the public eye at present, and if I could meet one person from the world of sport I would wish it to be him.

But above all, what I took home from last night's game was a renewed belief in the value and power of a collective experience - the pleasure of being part of a crowd. I'm glad I am triple jabbed and have recently had a bout of Covid, because I was able to relish the joy of a crowd, free for now of any worry of what I might catch: the collective elation caused by a goal going in or by the frustration of a misplaced pass or an unlucky miss; even the shuffling along in a queue for the bar and the toilets, with unknown strangers breathing down ones neck, felt somehow like a forgotten pleasure recaptured.

Lockdown and isolation suited some, and brought its own benefits - a chance to slow down, even to stop, listen and reflect, and we must not forget that. But we homo sapiens are social animals, and even those like me who prefer quiet places and one to one chats rather than noisy parties, can find joy in the collectivity which affirms a common identity, be it at a concert, a sports match, or even a religious act of worship. And as is often pointed out, there is in fact very little difference between an act of religious worship and a football match - not least the singing of songs of praise to those whom we worship.

You'll Never Walk Alone? Well yes, I will often walk alone, and I'll enjoy it enormously, but to walk and to rejoice among a crowd of others is also a true joy. 

"I want it all....I want it now" - or should patients be patient?

 

I have been a little saddened to see some of the frantic reactions in the instant world of social media to the news that the latest version of the Freestyle Libre monitoring system - Libre 3 - is unlikely be automatically available on NHS prescription to all living with Type One Diabetes in the UK.

It’s perhaps inevitable, given that we have been, quite frankly, spoilt by the rapid advances in diabetes management over the past five years or so, thanks in no small part to the team led by the indefatigable Partha Kar, whose enthusiasm and openness on social media has driven so much positive change.

Those expressing dismay that progress from Libre 2 to Libre 3 is not automatic should perhaps take a moment to think back just six years to the start of 2016 in the world of diabetes. It was a very different world: insulin pump therapy was still widely regarded as something mainly for kids or for those who had "failed" with MDI; looping technology was a somewhat subversive subculture in the hands of a of a few tech-savvy enthusiasts; very few people had even heard of the FreeStyle Libre - the overwhelming majority of us were still drawing blood from our battered and bruised fingers for an occasional snapshot of how our glucose levels were responding to the insulin we had put in a few hours previously; and the online diabetes peer-support community was a still very small group of social media users, not the vast and diverse body that it is today.

Six years on, things are very different: Access to pumps and to looping technology has grown significantly and is being trialled on the NHS with the likely prospect of greatly increased availability in the not-too-distant future, and the FreeStyle Libre (Flash version) is not far from being standard issue to all with Type One and soon for some with Type Two. Alongside this, and to a good extent the reason for all this progress, an online-based community of patients, enthusiastic healthcare professionals and diabetes charities continues to bring together and support those living with diabetes in a way which would have seemed pure fantasy even at the time of my diagnosis at the dawn of the internet age in 1997.

Compared to many living with Type One, I am relatively new to the condition. For those - and there are many - who have lived with Type One for half a century or more, the difference in how their condition is treated and managed is extraordinary - take a look at this article by my friend Peter Davies, for example. Recent years, even recent months and weeks have been interesting and exciting, and despite the continuing challenges of living with the condition, not least during these past two years of a global pandemic, we have much to be grateful for, and many reasons to be optimistic about the future.

Of course the biggest change was a century ago. Tomorrow, January 11^th 2022, marks the centenary of the first use of insulin therapy by the team led by Sir Frederick Banting in Canada - a cause for celebration which has already been much talked and written about, and which is rightly commemorated in the special edition 50p coin which many of us have bought or received as a gift in recent weeks.

As I never tire of saying, in most parts of the prosperous Western world of 2022, we are lucky compared to our forebears of only a few generations ago and indeed the millions living in countries where access to the insulin and monitoring technology on which we rely is not the same as that which we take for granted.

I therefore cannot help but feel that the somewhat grasping reaction to the news of the imminent arrival of Libre 3 to the UK represents something of a loss of perspective and a lack of gratitude for where we already are. For a start, as Partha rightly and politely reminded the online community on Friday, we are still in the period of consultation regarding access to Libre 3. The expectation is that it will NOT be an automatic entitlement to all living with Type One, and it is this revelation which has caused all the furore. However, this should not come as a surprise to those who have really read and thought about the guidelines revealed and warmly welcomed as recently as November, which stated that people with Type One would be entitled to Flash OR CGM according to individual need. Libre 1 and 2 are flash, but Libre 3 is a CGM, and that distinction is important, perhaps inevitably clouded by the use of the same brand name with the number 3 after it.

My reaction is to agree with this distinction. At present, I neither want nor need a real-time CGM: non-invasive monitoring which tells us the direction of travel of glucose levels was the quantum leap, and Libre 2 was another big leap from Libre 1 which for me ended the worry of night-time hypos. That’ll do me for now, and I’d rather leave NHS funding to those who need CGM more than me, such as children, those with no hypo awareness or the very old. And indeed for access to Flash for those living with Type Two, who could benefit every bit as much as we Type Ones have done.

I am lucky that I have good hypo awareness, and in general terms I usually have a pretty good idea of what my BG is, so constant BG information from a CGM is for me an unwanted intrusion, indeed a reminder of a condition in which I am not actually very interested and which I prefer to keep in the background of my life: CGM is TMI for me and there is  definitely such a thing as too much information about blood sugar levels.

So for now, I agree with the distinction between Flash and CGM, and for many, including me, the former is at present more than sufficient. Others may feel differently, and it might inevitably lead to talk of differing interpretations of "complex management needs", and so take us down the road of "postcode lottery" as to who gets it and who doesn't, or that those who are more vocal, pushy, well-informed or privileged may be more likely to qualify.

I speak, of course, as someone who uses MDI (we are still very much the majority) and who is - for now - perfectly happy with it, but if the numbers using a pump and closed loops starts to grow significantly as a result of recent changes and trials, the demand for a CGM may start to increase. But that’s one for the future.

Technology is a wonderful thing, and I am lifelong technophile. But it has its limits, and there are already many examples in everyday life where I am not alone in finding that the constant need for an upgrade sometimes blinds us to the virtues of tried and trusted simpler technology. Cars, satnavs, smart TVs, smartphones, washing machines, tumble driers have all arguably become so smart that many of us choose to ignore many of the features that we have paid for. The “upgrade” culture which is forced upon us has its downsides, and I for one often prefer to wait and see before jumping on board with the latest technology craze.

I want it all...I want it now sang Queen in one of their less memorable songs, an anthem to greed that I never particularly warmed to, and the reaction to the availability of Libre 3 has reminded me of that song and makes it a good title to this post.

Perhaps now is a moment when access to diabetes technology should be driven by need not greed. We have come a long way in a short time, and sometimes patients need to be patient.

Appendix: for reference, here are links to the current consultation documents via NICE:

TYPE 1 Diabetes in Adults: 

https://www.nice.org.uk/guidance/indevelopment/gid-ng10265

TYPE 2 Diabetes in Adults:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10264

TYPE 1 and 2 Diabetes in Children & Young People:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10266

Always on My Mind: the relentless reality of life with T1D

It’s coming up to my diaversary: December 19^th 1997 was the day on which I went to my GP for a hurriedly-arranged end-of-day appointment to investigate a urinary infection following a very bad dose of ‘flu, only to be told that I had very high blood sugar levels, indicative of diabetes. Within a few weeks, I was inducted into the world of injections, testing and, well, you know the rest…

It’s a story I’ve told more than once before on this blog and on social media, not least at previous diaversaries, so a simple recycling of my diagnosis story is neither appropriate nor necessary here.

However, diaversaries always stimulate reflection, and over the months of reduced activity and increased thinking time brought on by the pandemic, I am increasingly drawn towards the far-from-original narrative that the worst thing about Type One Diabetes is the sheer permanence and omnipresence of it. For me, that means towards a quarter century - over one third of my entire life and over half of my adult life - now lived with the seldom severe, yet ever-present burden of the condition. Just because we don’t look unwell, and just because (in most cases) we don’t constantly go on about it, doesn’t mean that we are fine with it. I still occasionally come across people who think I have “got better” from my unfortunate illness back in 1997.

My T1D Footprint from JDRF

My thoughts on this aspect have been brought on in part by a growing sense of disappointment with the latest portrayal of diabetes in the media. Six months ago a character in the TV soap Coronation Street, 17-year-old Summer Spellman, played by Harriet Bibby was diagnosed with Type One in a story which gained much attention on diabetes social media, and which seemed at the time to be commendably well-researched by the scriptwriters and producers of the long-running soap. Much was made of the fact that the writers and actors had spoken with diabetes charities, medical experts and most importantly people living with Type One to ensure that the diagnosis story was told in a realistic and relatable manner. So far, so good, and well done to Harriet for representing the condition so well - the picture below captures what will be a familiar memory for many readers.

Summer Spellman in hospital after her diagnosis,
June 2021

As a longstanding Corrie fan, I was pleased to see that the scriptwriters had chosen to use diabetes as a storyline. However, whenever diabetes rears its head in this way, I always sense that the reality of living with T1D, and therefore of portraying it in a TV drama, is actually not interesting or dramatic enough in the longer term. The result is that scriptwriters either forget the story altogether, or use it as the basis for something more exciting, but frankly unlikely. Such is TV drama.

Summer is not the first Corrie character to develop T1D, and a previous storyline illustrates the above point rather well: back in 2003, another young woman in the soap, Katy Harris, was also diagnosed with Type One, and like many TV scriptwriters, the then Corrie team saw in our lifelong and potentially fatal condition the potential for good dramatic material, rather than simply demonstrating what thousands of ordinary people live with. Soon after her diagnosis, Katy embarked on an affair with her neighbour Martin Platt, a nurse 20 years her senior who was helping her come to terms with the burden of her condition, but took this help rather too far. As inevitably happens in soaps (where conception seems remarkably easy) she immediately became pregnant and in the mess that ensued she ended up killing her own father and then herself. As you do.

Corrie's previous T1D character, Katy Harris,
with her ill-advised love-interest, nurse Martin Platt

At the time of writing, I am increasingly fearful that Summer’s story is heading for melodrama rather than a less dramatic portrayal of the reality of life with Type One which might be more helpful in raising awareness, but wouldn’t generate viewing figures. Summer’s onset and diagnosis were accurately portrayed, and credit should go to the scriptwriters and to the actors involved for keeping it pretty real. However, at the time of writing (early December 2021), Summer has become the centre of a story about an alleged inappropriate relationship with her neighbour and English teacher Daniel Osbourne, with diabetes reduced to a bit part in the story (Mr Osbourne’s giving her an “energy bar” when her blood sugar was low being used as part of the evidence against him). An unfortunate echo of the Katy storyline, and certainly a distraction from any awareness-raising about diabetes.

Summer with her alleged ill-advised love-interest,
teacher Daniel Osbourne

I shall be interested to see where this one goes: there have been passing hints that Summer is having some concerns over apparent (to her) weight gain, which leaves the door open for a diabulimia storyline, so that may yet be part of the story, and would be a good line to pursue in many ways, given that diabulimia is a hidden and overlooked aspect of the condition, very much known to me because of the battles faced by a good friend of mine who lives with it.

However, what has again been overlooked is the opportunity to portray the often dull omnipresence of diabetes in our lives. I am very much at peace with my diabetes, but if anything ever threatens to drag me down, it is this relentlessness. Most of us, most of the time are not visibly unwell, nor apparently burdened. Yet we are burdened, and if we don’t respond to and deal with that burden every single day, we would very quickly become unwell and, well, die. Diabetes is, as the song says, Always on My Mind (there you go, that’s the title sorted!), and that’s a very difficult reality to portray to others without becoming a bore. It’s not dramatic, it’s seldom tragic, but it’s always there. The first and last thing that I have done every single day since Christmas 1997 is to check my blood sugar level, and in between times, every action, every event, every plan, is made with reference to its potential impact upon my BG level. And as I so often point out, the irony is that it’s the miracle drug to which we owe our survival - insulin - that presents the day-to-day threat to our wellbeing. That’s a very odd thing to have to live with. We don’t monitor and react to the condition as such, we monitor and react to the effects of the drug used to treat the condition. And the administration and monitoring of that miracle drug is entirely in our own hands, day in day out.

If Summer Spellman’s diabetes in 2021 was being accurately portrayed, she would have at least one device visibly attached to her body, she would be seen frequently checking a phone or reader, and either fiddling with a pump or administering an injection in a potentially undignified manner before every meal. She would also quite often be mildly unwell, possibly a little confused, and would need to sit down somewhere and eat jelly babies or similar. To describe all this in writing makes it sound more intrusive than it actually is, but it is the truth. As the Diabetes UK campaign says, diabetes is relentless.

This post is perhaps untypically negative for me, and I am not given to self-pity, so I must conclude on a positive note. I am fortunate, very fortunate: I am fortunate that I live in 2021, not 1921 or any earlier; I am fortunate that I live in a prosperous western country with a publicly funded healthcare system; I am fortunate that I did not endure diabetes as a child or adolescent, when it would have impacted far more upon what I wanted to do; I am fortunate that I am male, and therefore not burdened with the additional impact of monthly hormonal variations on blood sugar, nor the body image issues faced more by women than men; I am fortunate that the relentless march of diabetes technology is reducing the burden, notably of finger prick testing; and above all I am fortunate that I enjoy the support and friendship of the many people from the diabetes community whom I have met and worked with in recent years, both fellow patients and healthcare professionals.

So I’m doing fine with it, and to continue to do so well into old age is my realistic and achievable aim. But yes, diabetes is Always on My Mind, whether it shows or not.

There's always a good song title for any post, and with this one there are two standout versions to share: either the peerless Elvis from 1973 or the wonderful electro-pop reworking by the Pet Shop Boys which famously prevented Fairy Tale of New York from getting the Christmas Number One spot back in 1987. A great song, with two very different interpretations. Click on those links to enjoy either or both versions on Spotify.

Happy Diaversary to me when it comes, and Happy Christmas to everyone.