Tuesday, 14 June 2022

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.

 

Sunday, 8 May 2022

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 7th 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. 

Monday, 10 January 2022

"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 11th 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

Friday, 10 December 2021

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


It’s coming up to my diaversary: December 19th 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.

Thursday, 11 November 2021

September ’21 (Oh What a Night!): ArT1st Live


I’ve never been particularly prolific on social media or as a blogger. I prefer to use fewer, more considered words rather than too many words in the real world and I am no different in the online one. Moreover, it's been an exceptionally busy few months for me, with various post-retirement involvements and responsibilities all bringing worthwhile, enjoyable yet time-consuming tasks my way since the end of summer. And with two members of my family near and far, as well as a best friend, unwell in recent days, that too has been more of a priority than shouting into the echo chamber of diabetes Twitter during this Diabetes Awareness Month.

I've looked on as November has brought the usual crop of posts, tweets and images, all aimed at raising awareness, especially in this centenary year of the discovery of insulin therapy. I’m a little bit concerned that it’s starting to become a bit dutiful and ritualistic, but I admire those who persist. There is a growing sense that it's all been said before, and the “awareness-raising” posts that crop up on Twitter, Facebook and Instagram during November in the run-up to World Diabetes Day on the 14th often seem increasingly contrived or recycled. I sometimes worry that awareness raising does nothing more than preach to the converted. Many who were previously prominent in the diabetes community have gone quiet, and it sometimes seems that they are the wise ones. I was very sad recently when I saw a post from one of them apologising for his lack of advocacy presence, or worse still another saying she had been accused of lack of advocacy activity - the lady concerned is more than a little busy raising two lovely pre-school children, amongst other things. Those just quietly getting on with their lives without telling the world all about it are in many ways my dia-heroes.

Having said that, I have read, this year as every year, some wonderful observations and stories which serve to remind us all that we are far from alone, and for those newly diagnosed that there is a long and fulfilling life to be lived despite the undoubted challenges of managing the condition. Such posts and stories encourage others, and encourage me to keep writing and sharing, and more importantly to enjoy the work of others.

I enjoy writing, and so if and when I find something worth saying, I shall say it. There's no point in just writing for my own pleasure, so I shall continue posting here and hope that some will enjoy it. However, as befits my long-held and oft-stated position, I have little expertise in diabetes, only experience of it, and limited enthusiasm for diabetes technology, so there's not much for me to write about in the field of diabetes. Heaven forbid that I should be thought of as a “diabetes blogger”.

So I am writing and posting this piece for Diabetes Awareness month, and for WDD on Saturday. It’s a long-overdue reflection on ArT1st Live, already fading into a distant memory, yet in many ways the proudest day of my 24 years living with diabetes, and a day which encapsulated so much about my attitude to the condition. It’s about diabetes, yet it isn’t. Just like me.

The  ArT1st Project - still very much current and future as well as past - came to a triumphant climax on Saturday 25th September, with a gathering of around 150 people from across the UK and beyond at Drapers’ Hall in the City of London for a celebration of the creative and artistic talents of people living with Type One. 

The project had originally been the brainchild of Partha Kar back in 2019, and was supposed to be a one-off real-world event. He invited a group of enthusiastic community members - both HCPs and people with diabetes – to start planning an event, but it fell victim to the Covid-19 Pandemic and became an online event, which provided a much-needed distraction for organisers and contributors alike during the tough days of the first and severest lockdown in 2020. The website remains a wonderful reminder of what was achieved by so many, and will remain for the foreseeable future as a reminder of those difficult yet in some ways life-affirming days.

However, as soon as circumstances permitted, the organising team wanted to make the live event happen, and happen it did: perfectly timed in many ways, despite more than a few Covid scares, it proved for many of us to be a welcome return to real-world socialising, to the joys of dressing up, of eating and drinking together, which are such an essential part of what makes us human. The sense of excited anticipation that comes with getting dressed up, the “how do I look? feeling, the butterflies in the stomach, were forgotten yet precious emotions. And there was so much to enjoy about the evening:

The venue, Drapers’ Hall was simply perfect, and a source of real personal pride to me, having secured it thanks to an unlikely centuries-old connection between one of the City’s most prestigious guilds and a small-town school in Lancashire to which I devoted an entire working career. Everything about it was pitch-perfect, notably food and drink of the highest quality, discrete and attentive service by the catering team, and rooms which almost literally took the breath away of all seeing them for the first time.

The Livery Hall, Drapers' Hall

The attendees - people with diabetes, their families and NHS professionals who care for them - were a delightfully esoteric mix, bringing together some familiar names and faces from the world of diabetes care and advocacy yet also many more who had seldom, if ever, met or interacted with others from the diabetes world. That alone was a triumph, extending the reach of the community in a new way.

But above all, the performances and artwork to which we were treated were phenomenal, and gave us a powerful reminder that Type One Diabetes, that most random of afflictions, creates a community which is a random collection of individuals, impossible to categorise by age, gender, lifestyle, personality type, wealth or anything else. In this case, all they had in common other than T1D was a remarkable level of creative talent, and a wonderful willingness to share it.

And so we were treated to a wonderful celebration of life despite diabetes, not life with diabetes. After a brief history lesson from me, explaining how on earth we had all ended up in this wonderful building, my best friend and fellow organiser Ellie Huckle set the tone with a thoughtful take on the link between the imperfect delights of the arts and the imperfections of life with diabetes, and then we were able to forget the D-word and enjoy ourselves. First we had the edgy comedic genius of Ed Gamble, who captured perfectly the spirit of the event with some hilarious observational material, yet remained commendably clear that he was first and foremost a master of ceremonies rather than top of the bill. 

Ed Gamble

Ed was followed by Sophie Oliver, a student of ‘cello at the Royal Academy of Music, whose dignified yet joyful interpretation of familiar favourites from popular and classical music set the tone perfectly. 

Next came Anibal Miranda, a Spaniard living in London, with passionate interpretations of the musical theatre numbers that he loves so much.

Anibal Miranda

Then a scratch acappella ensemble called The Darling Buds of May put together and led by Pete Davies, with Nick Cahm, and Abi Ackerman, three stars of the GBDoc firmament, who blended perfectly with their supporting guest vocalists with a performance of the highest quality in a musical genre in which there is no hiding place.

The Darling Buds of May

After the interval came Abi Ackerman as a vocal soloist, her powerful voice and confident stage presence filling the Hall as only she could, including a self-penned song based around the thoughts of others living with T1D. 

Abigail Ackerman

She was followed by the wonderful Duke Al Durham, a Welsh rap poet who voices feelings familiar to all of us in his intensely personal writings. 

Duke Al Durham

Next came Siobhan Argyle, a T1D Glaswegian Victoria Wood, whose catchy, witty and engaging ditties of everyday life during the pandemic were delivered with a confidence which belied the fact that this was her first public performance.

Siobhan Argyle

And finally there was Sheku Kanneh-Mason: what can we say? Already a household name thanks to his appearances on BGT, Harry and Megan’s wedding, at the Proms and much more besides, he brought his cello to life in a manner which was, almost literally spellbinding. The fact that, before and after his performance, this delightfully self-effacing young celebrity just sat at a table with other guests, and that he duetted with Sophie Oliver with not a trace of self-importance speaks volumes about the man. Truly a superstar.

Sophie Oliver and Sheku Kanneh-Mason

So much else was good about the evening, most notably the chatter in small groups that is always one of the best things about any real-world get-together, but almost forgotten is the fact that the evening raised a much-needed £6000 for JDRFUK, whilst being pitched at a cost to attendees that made it accessible to all, thanks to the generosity of commercial sponsors Abbott, Novo Nordisk and Dexcom. An auction of artworks created by people with Type One raised almost £2000 thanks in no small part to Partha Kar’s persuasive mastery of a skill new to him.

Professor Partha Kar, OBE

But perhaps the best thing about Art1st as a project and ArT1st Live in particular is that Diabetes has been present, yet totally absent. Does that make sense? Of course it does! That, surely, is a realistic aim for all of us compelled to live with this fickle condition, and I have been fortunate enough to be able to live that out that aspiration over these past 24 years. 

Art1st Live was a gathering dominated by people who live with the condition, all of whom will have spent that evening discretely aware as always that their condition needed their attention, that the unusual circumstances of the evening, the unfamiliar food and drink, the late night, the excitement would all have to be borne in mind if they were to make it to the end with enjoyment and dignity unscathed. And yet all they did was enjoy themselves. Diabetes was there, but was largely unseen except for a lot of technology proudly on display because of sleeveless dresses. It was an evening of fun and friendship, about the people, not the diabetes, the ability not the disability.

As with all my posts, I like to find it a title from a song, and this one came to me as I sat alone in my hotel room after the event, unable to sleep yet enjoying the memories already. An exuberant celebration of a wonderful night out? What better than Franki Valli and the Four Seasons’ 1976 classic? Let’s just rename it with a revised full title: September ’21 (Oh What a Night!). What a night indeed, and one which, by popular demand, will surely be repeated before too long.

In conclusion, I must salute my fellow organisers: Agnieska Graja, Pete Davies, Partha Kar, Ros Gray, Lydia Parkhurst, Lis Warren, Sarah Ali Racanière, Jazz Sethi, Ellie Huckle, Kamil Armacki, Jess Broad and Danni Hitchins. As good a team as any I have ever had the pleasure to work with, and one linked by one thing: a life with, or caring for others with, Type One Diabetes. Patients, health professionals, a charity and three commercial companies working together. Take a bow:

Members of the organising team

ArT1st Live was sponsored by headline sponsors Abbott and Novo Nordisk, and supporting sponsor Dexcom, in order to allow all proceeds to go to JDRF UK.

All organisational work was carried out by community volunteers, supported by JDRF staff.

Photo credit - Max Turner Weddings

Twitter: @maxturnerphoto

Instagram: @maxturnerweddings

Website:  www.maxturnerweddings.co.uk


Wednesday, 18 August 2021

Testing, testing: Everything's Gonna be Alright

A quick and time-sensitive post, which I hope will serve to inform, reassure and possibly even persuade.

It's all about testing for Covid-19, and specifically about the oft-maligned lateral flow tests which have become so familiar to many of us. I felt moved to write up and share some thoughts here and on Facebook because I have today (18-08-21) done my twice-weekly lateral flow test with one of the new-style kits for the first time. 

I had heard that there was a new version coming soon, but hadn't realised they were being issued until I opened a new pack, received yesterday.

The new version is significantly different to the ones which have become so familiar, and a significant improvement from what I can see: 

  • no need to swab in the mouth, which for me has always been the most uncomfortable bit. Just once in each nostril, twisting x5 each side.
  • the extraction tube is pre-filled with the fluid, so no need to "decant". It has a peelable top, making it rather reminiscent of the insulin pen needles, so familiar to diabetes peeps.
  • the swab is a bit shorter, more robust-feeling and was to me less irritating in the nose.
  • the test cassette looks different, but has the same functionality (although on mine today, I couldn't get my phone's QR reader to recognise the code, so had to enter it manually).
  • the extraction tube holder is a small, reusable plastic plinth, not the rather large and ungainly cardboard box.
  • 4 drops not 2 on the cassette, then ready in 15 minutes, not 30.

So this morning's test felt like a re-learning experience, but once we get used to it, these will be very easy to do, and can become as much a part of daily routine as cleaning teeth, and just as easy.

I'm not sure how widely available these new-style tests are - I always get mine by doing an online order via the NHS app, which is always a quick and flawless process, with next-day delivery, but if you haven't used a new style test yet, I hope this post gives you cause for some small optimism (I am far too easily excited by novelties).

And finally a bit of shameless pontificating: if you haven't been a regular LF test user, I am a firm believer and highly recommend it. They may not be 100% reliable, but are surely a whole lot better than not testing, and I find it reassuring to be told twice a week that I am unlikely to be infected as we all get out and mix more.

We keep being told that we are at or near a pivotal point in this pandemic, but I have to say that to me it really feels like it right now: The opening up and deregulation of a month ago has not led to the apocalyptic infection rates that so many keyboard warrior experts were all too quick to predict, and although the daily rate remains high and hospitalisation and death rates are still alarming, we appear at the moment to be getting tantalisingly close to striking the balance between hiding from and living with the virus. I am not convinced that New Zealand's much-vaunted "Zero-Covid" approach is sustainable in the longer term, and their decision yesterday to lock down the whole country for one confirmed case cannot go on forever if they want to remain part of the world's trading and tourism community. 

I am, and always have been, shamelessly rose-tinted in my view of life, so anything I say about the pandemic or anything else has to be seen through that filter, but I am keen to get on with my life. I shall remain cautious in my approach to what I do and where I go, but as I am not really a fan of crowded noisy places, there is not much that I want to do that is particularly risky. I am desperate to get along to the Unibol Stadium to watch the Mighty Wanderers again, and I have plans for visits to London for exciting events in the coming few weeks, which include rail travel and hotel stays, but I won't be found in a crowded nightclub or a busy bar. I shall continue to wear a face covering for the foreseeable future on trains and in shops, for my own and others' reassurance, but I refuse to live in fear, and shall not waste energy getting annoyed about those who choose not to wear a mask.

So - getting back to the purpose of this post - I hope that regular and easy testing will prove to be a small price to pay for the freedom to begin to live a little again.

And a song title for this post? How about a forgotten 90's classic Everything's Gonna Be Alright by Sweetbox, still one of the cleverest samplings of classical music in my opinion, and a great message for a vision of a post-pandemic life.


Friday, 9 July 2021

Sweet Caroline: How a minor hit from fifty years ago became a ubiquitous football anthem

 

Truly, we are, living in strange times. Strange days indeed - most peculiar, mama (kudos to any reader who can identify that song lyric without googling it)

With numbers testing positive for Covid-19 here in the UK surging, the government is nevertheless relaxing the restrictions with which we have been living for fifteen months. Cue joy and relief, but also much social media driven anger and condemnation, barrack-room expertise and prophecies of doom and gloom....Let’s wait and see.

Yet as the UK and its government once again risks being cast in the role of international pariah, the country is at the same time riding a wave of excitement and national pride whipped up by the performance of England's football team, guided and led by the admirably restrained, palpably decent, thoughtful and eloquent Gareth Southgate.

In 2018, the unexpected success of his young squad in reaching the Semi-Finals of the World Cup in Russia briefly diverted attention, lifted the mood and unified the nation at the height of the agonisingly long process of leaving the EU. Oh to be back in such simple, carefree days….

Three years later, an even younger squad has gone one step further in the delayed Euro 2020 Tournament and at the time of writing, the nation (well certainly its media) is in a state of heady excitement and euphoria at the tantalising prospect of the squad bringing to an end to the fifty-five year wait for a major tournament win in our national sport.

Southgate's squad are more than just a group of footballers more gifted than their predecessors of several generations past. They are a thoroughly admirable group of young men, schooled by their clubs and in no small part by their national coach in the appropriate behaviours, attitudes and responsibilities that come with their status as richly-remunerated national heroes. Gone, it seems, are the days of laddish “boys will be boys” behaviour, of responding to media questions with contemptuous clichés or even open hostility, and of hiding from the bigger issues in society.

The 2021 squad is a rainbow coalition in some ways reminiscent of France's golden generation which won the World Cup in 1998 and the Euros in 2000. It is a team of thoroughly modern English footballers, many with recent family origins from outside the country, yet every one of them proudly flaunts their patriotism and pride in wearing that shirt with its iconic three lions. The likes of Marcus Rashford, Tyrone Mings and Raheem Sterling have been unafraid to speak out against racial and social injustice, whilst Harry Kane, in some ways every inch the cockney diamond geezer of yesteryear, wears his LGBT+ armband with manifest comfort; men like him in the not-too-distant past would probably have exhibited the tribal homophobia and intolerance which was once endemic among the white working classes.

Rashford in particular has become a national treasure thanks to his off-the-field advocacy for children like he once was, and that he did so last year with steadfast politeness and respect for those in power was a remarkable achievement. He may be an angry young man from the wrong side of the tracks in Wythenshawe, but his anger at social injustice is nuanced and constructively channelled.

Other players, like Mason Mount, Declan Rice and Calvin Philips not only look like schoolboys living out their dream, but behave with the gratitude and humility that in the past was often lacking in those paid a fortune to do what most of us just have to do for fun. Win or lose against those stylish and talented Italians on Sunday night, these young men have done themselves and their manager proud, and I for one will be eternally grateful for the joy that they have brought us in this toughest of years.

And then there's the music...

Heady days need a soundtrack, as we have been so effectively reminded by all the nostalgia for the summer of ’96, but unlike in 1996, the 2021 soundtrack is strangely retrospective. In 1996, Britpop was at its height, producing some of the best new material that had been written in a generation, launching stellar careers for the likes of the Spice Girls and solo Robbie Williams, whilst David Baddiel, Frank Skinner and the under-rated Lightning Seeds created their singalong masterpiece, Three Lions. That song is everywhere right now, almost always murdered by a tuneless drunken chorus, but it is in my view truly a work of genius. It's wonderfully English, not triumphalist as many think, but rather a self-deprecating tale of repeated failures and near-misses, laced with the pride which we as a nation seem to take in plucky losers and the timid but very real longing for redemption.

Of course, Three Lions has been at the forefront of our giddy ride to the Final of Euro 2020, but it is being run close by Neil Diamond's Sweet Caroline, which we have heard belted out by players and fans after every win, gleefully joining in with the “dah-dah-dah”.


This has set me thinking, as often happens with my musically addled brain: how is it that certain songs achieve iconic ubiquity years after what was initially a thoroughly underwhelming chart performance?

Sweet Caroline is a perfect example.

Neil Diamond was for some years a respected but unheralded songwriter, until he broke through in the UK with Cracklin’ Rosie in late 1970. He had written I'm a Believer for the Monkees and other successful songs, but his name was little known on this side of the Atlantic, and when he finally achieved modest success as a singer, he was to me and my teenage contemporaries the sort of singer that your granny liked, a crooner no less. Sweet Caroline had been written and released in 1969 in tribute to JFK's daughter Caroline Kennedy, and made no mark whatsoever on the UK charts. Two years later, it was released as a follow-up to Cracklin’ Rosie, and reached No 8 in our charts. For the next thirty years or so, it was largely forgotten, but then early in the 2000s it started popping up at the sort of disco that goes with every modern wedding reception - the sort where dad dances, granny kicks off her heels to reveal her true undignified self and ten-year-old boys do a knee slide across the floor. A similar thing happened to Can’t Take my Eyes Off You, another minor hit from the late 60s by an American crooner dressed in a pullover - Andy Williams.

Next, DJs responsible for after-match playlists caught on to it, and in no time everyone knew it, such that when your team pulled off an unlikely escape from relegation and the fans partied like they had won the League, Sweet Caroline, dah-dah-dah became a song of triumph and joy. Then as Wembley filled up this summer with fans for the first time in over a year, England started winning, and the rest is history. Neil Diamond’s accountants must be laughing all the way to the bank.

Many songs have had a similar trajectory; here’s a few more that were either unnoticed at the time of release, or in some cases derided:

Tony Christie’s Is this the Way to Amarillo, written by the wonderful Neil Sedaka and containing some of the cheesiest rhymes ever attempted (Dawning-Morning, Amarillo-Willow-Pillow, Marie-Me, Ringing-Singing, Maria-See her etc ) made it all the way to No 18 in 1971 (there’s something about that year!), then remained forgotten until Bolton’s comic genius Peter Kay imbued it with post-modern irony for 2005’s Comic Relief, such that it became a mass singalong song. I maintain that one of the happiest moments of my entire life was when I was one of 27 000 fans at the Reebok Stadium in  May 2005, celebrating as Sam Allardyce’s Bolton Wanderers team of misfits and has-beens secured European football to the tune of Christie’s Shala-la-la-la-la-la-la-la – Diouf-Diouf.

The Proclaimers’ 500 Miles made it to No 11 in 1988, then remained forgotten until revived years later, again by a combination of mobile DJs and football fans; likewise, Jeff Beck’s Hi Ho Silver Lining (No 14 in 1967, No17 in 1972) and even Johnny Cash’s Ring of Fire, which has never even made the charts, yet achieved anthemic status after Liverpool’s 2005 Champions’ League win and the England Cricket Team’s Ashes win the same year.

Even Queen’s Don’t Stop Me Now was a relatively modest UK No 9 on its first release in 1979 at a time when the now legendary band had passed their first wave of success and were seen by many music fans to be an example of outmoded, overblown and over-produced pomp-rock. Forty years on, it is everyone’s favourite singalong song.

The list could go on, and many will have their own favourites to add to this list. They all date from the days when singles chart position and longevity was very much the test of a song's success; since around the turn of the millennium, chart success has mattered little, indeed few of any age could name the current Number One at any given time. Yet despite failing that test at the time of their release, these songs have become enduring and ubiquitous. What do they have in common? Well not a lot really, other than that intangible thing called a damn good tune, often a brilliant hook and above all something we should just call singability.

Let’s just hope we’re still singing Sweet Caroline at 10pm on Sunday night, and that “good time never seemed so good” proves to be true. I think we all deserve that pleasure.

#ItsComingHome

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...