Sunday 28 January 2024

Go Your Own Way


I developed Type One Diabetes just over 26 years ago, in December 1997. I have often said that it was a good moment to join that “club that nobody wants to join” in terms both of my own age and circumstances (I was aged 40, married with three children, settled in life and work) and in terms of diabetes management and treatment (beyond the days of glass syringes, primitive inaccurate blood tests etc.)

Yet even since 1997, things have got markedly better, with the past decade or so having brought two significant advances: The first a quantum leap forward in technological support for those living with the condition; the second the growth of diabetes peer support communities linked by social media networks.

The advances in diabetes technology were neatly highlighted by the nice coincidence that my most recent “diaversary” just before Christmas (19th December, marking 26 years of the condition) coincided with the final announcement of NICE guidelines about the use of closed loop technology for those in the UK living with Type One, the culmination of a remarkably quick process which started with the arrival of the first mass market non-invasive glucose monitor - the FreeStyle Libre - ten years earlier. Those of us living with Type One under the care of the NHS are indeed blessed with a level of support for our condition which is the envy of the world. The leadership and accessibility of Partha Kar has been instrumental in making this happen, however much he protests that he is “just doing his job”

The growth of peer support fuelled by social media connectivity shows no sign of slowing down, and has achieved a good deal, albeit that the sheer numbers involved mean that it has lost its early intimacy and has inevitably led to a degree of empire building and thinly disguised rivalry between individuals and groups.

These two advances mean that nobody can deny that here in the UK, people living with Type One are well served by the healthcare system and by the community of people living with the condition who are keen to share experiences, expertise and friendship.

And yet…

There is increasingly a nagging feeling in my mind that I’m being left behind, a feeling complicated by the sense that I’m actually perfectly happy to be left behind. What’s going on? It doesn't quite make sense, so permit me to explain.

Forgive the self-analysis here, but in general terms, I like to believe that I am fairly adaptable to changing times. Although I grew up in the pre-digital age, I have embraced that revolution with appreciation rather than the resentment and bewilderment which I often see in others of my own age, let alone those older than me. I do not eulogise the “good old days”, but rather I positively enjoy and greatly appreciate the comfort and convenience of the world in which I am growing old. I spend way too much of my life glued to my phone, like the overgrown kid that I am. I am fully “digitised”

I therefore had no hesitation in taking up Abbott's groundbreaking FreeStyle Libre at the earliest opportunity, and in subsequently embracing its evolution into a de facto CGM using my smartphone rather than the reader. Moreover, I was among those singing the praises of this device from its earliest days thanks to my early adoption of the online diabetes community which coalesced from around 2012 onwards. It was the diabetes community that first alerted me to these advances in technology, and it remains a source of great pride to me that I played a small but significant part in the campaign to get this life-changing technology onto the NHS prescription tariff in 2017.

However, I now find myself being left behind as others embrace pumping for insulin delivery and closed loop systems to automate this process to a good extent. I feel a bit like the man who bought a top-of the range VHS video player in the late 1980s and refused to embrace DVDs, or the man who bought a stack of DVDs and CDs in the 1990s and now refuses to subscribe to Spotify or Netflix.

I am, by nature, a creature of habit with little taste for adventure and no thirst for the unknown. The facts about me speak for themselves: I’ve been married to the same woman for 40+ years; lived in the same town for 36 years; taught in the same school for 36 years; banked with the same bank since I left university; I’m now driving my 6th successive Mitsubishi; I’ve been with 02 since it was BT Cellnet, firmly wedded to Android rather than Apple, and I feel guilty and disloyal whenever I am eventually persuaded to change energy supplier in search of a cheaper deal. I am inertia personified in some respects.

Small wonder, then, that I am perfectly happy with “just” my insulin pens: I know what I like and I like what I know could have been coined to describe me.

I have therefore watched with interest rather than envy as the Type One world has gone closed loop crazy. Social media timelines are filled with posts testifying to the life-changing effect of what some term an “artificial pancreas”, with screenshots of flat overnight blood sugar lines or of Strava maps telling the world that its author has been on a run freed from the need to fret about its effect on sugar levels. To be honest, these have started to become something of a bore.

And here I sit, armed only with my FreeStyle Libre and my ageing insulin pens, with a time in range of around 75%, an Hba1c of around 50 and no enduring sense that my life has been ruined by diabetes. Do I want an insulin pump? Do I want it to be linked to a CGM to take over the management of my diabetes?

The truthful answer is “I’m not at all sure I can be bothered”. I’ve got better things to do with my life than to learn the ins and outs, the tips and tricks of a pump when my own tried and tested “hit and hope” methodology continues to serve me well. Yes, I get hypos and hypers, but armed with a Libre I can and do correct with micro doses or snacks in a manner which works well for a largely home-based retired life. If I were still working, I’m pretty sure that I might think rather differently.

However I do often wonder why, if all this automation is supposed to be so liberating, it appears to occupy so much of peoples’ time and energy. I never see any posts by people - still the majority - using MDI, and I sense that’s at least in part because many of them, like me, prefer to just inject and get on with their lives. My strategy for living with diabetes has always been to keep it in the background where it belongs.

So am I opposed to the continued rollout of technology? Absolutely not. I firmly believe in “each to their own”, and I am well aware that there are many for whom a more automated approach is a godsend. And they are NOT all youngsters – I know many PWD of my age and older who swear by the life-changing benefits of looping.

Will I continue to resist the use of a pump and an HCL? I don’t know – ask me again every few years!

Do I think there are other issues, at least as urgent, arguably more, that perhaps should get the same level of effort, publicity and indeed funding that have driven the “rise of the machines”?

I most certainly do.

I’ll pick out three:

Firstly, I'd like to see the spread of non-invasive glucose monitoring on prescription to those living with Type Two diabetes. The phrase knowledge is power is often applied in a healthcare context, and despite the recent progress in linking CGM to insulin delivery, I still believe that knowing BG levels and their predicted direction of travel, and knowing what the effects of different foods and levels of exercise have on blood sugar levels provides for many the key to better understanding of, and hence better self-management of all types of diabetes.

Secondly, I'd like a reform and standardisation of the education given to people with diabetes at or soon after diagnosis. Another over-used cliché springs to mind - “education, education, education”, and I have a strong sense that there is huge variation on the availability, timing and delivery of education, and that the DAFNE and DESMOND models, with their somewhat rigid teachings, have been allowed to dominate to the exclusion of more streamlined models better suited to this age of busy lives and flexible working hours.

Thirdly, I would love to see a real and sustained investment in the understanding and treatment of the hitherto under-reported psychological aspects of living with such a burdensome and stigmatising condition. The recent publication of the parliamentary report into disordered eating among those living with Type One shone a light on this scandalously neglected issue. This one is close to my heart, as my best friend is among those affected and among those most engaged in the calls for better understanding and more integrated care, but it struck me very strongly how many other names and faces familiar to me from the online communities have been to some extent living with this debilitating and dangerous add-on to Type One.

So there we are: the outlook for people with Type One is vastly better today here in the UK than it was even 25 years ago, let alone a century ago when insulin therapy changed Type One from a death sentence to a manageable burden. Yet this situation brings its own challenges at a time of ever-increasing demands upon the limited resources of any healthcare system, the NHS more than any. I hope that we can continue to roll out pumps and loops to all who need or indeed want them, but at the same time, I hope that we in the UK will also count our blessings and make sure that other deserving, and in many cases more urgent, calls on scarce funds can be met.

I close by reiterating what is often said, but is so important: Your diabetes, your way. There’s enough factionalism out there, and this post is absolutely NOT intended to criticise those who have shown such drive and enthusiasm for the advance of technology, be they patient advocates or healthcare professionals. These people have been truly heroic and have achieved unimaginable progress in a remarkably short time.

But we must remember that, just as in everyday life where not everybody wants a smartphone, a smart TV, state-of-the art satnav and suchlike, not everyone wants their diabetes to be managed by technology. How many programmes on your washing machine do you actually use? How many apps on your smart TV do you completely ignore? And do you never get irritated by the constant bleeps and warnings, the sheer information overload, given by modern cars? Technology is wonderful, but can be too much of a good thing for some.

It's the same with diabetes technology: an insulin pump with closed loop is not much help if you live with diabulimia.

I am not extreme on this, but I do hope that other urgent needs of the diabetes community will not be overlooked or underfunded amidst the scramble for diabetes tech. Despite what the hashtag says, diabetes tech can wait - for some of us.

As the song (and my title of this post) says, Go Your own Way - and I’ll go mine.

Friday 19 January 2024

Sit Down (next to me): Why men need a shed.

Over the past three years, I have found myself heavily involved in my local community in a manner which has occupied my time and my mind, suiting very well this stage of my life: retired from a busy and all-consuming job, yet still with the energy both physical and mental to commit to voluntary work. Perhaps the best of several aspects of community life in which I am involved has been my part in helping to set up and run a Men’s Shed.

Never heard of a Men’s Shed? Neither had I until just over a year ago. Bear with me while I tell the story - How Kirkham got its shed.

Kirkham, the town which I have lived in or near for towards 40 years, has since 2020 been the fortunate beneficiary of some significant government funding to help regenerate it in both physical and social terms.

Kirkham is a small (population approximately 8000) market town in the Fylde district of Lancashire. If you are unsure of the geography of this part of the world, the Fylde is the name for the largely flat, rectangular area which lies between the Lune estuary in the North, the Ribble Estuary in the South, the M6 motorway in the East and the seaside towns of Fleetwood, Blackpool and Lytham St Anne’s in the West. Historically, it was called Amounderness and was one of the hundreds (an archaic term for an administrative subdivision of a larger region) of Lancashire.

Kirkham is an ancient town, established on the site of a 1st century Roman cavalry hill fort, and named before 1066, after the church which is said to date from 684AD.  For much of its history Kirkham was a town of some importance, an administrative and ecclesiastical capital of the Amounderness Hundred, and a market town serving a wide and prosperous agricultural hinterland. In the 18th and 19th centuries, it prospered as a centre for the manufacture of flax and rope, with the golden age of sailing ships providing a ready market for such products: it is said that at the time of the Napoleonic Wars, very much a highpoint of British naval power, much of the Royal Navy was powered by sails made in or near Kirkham. When cotton superseded flax, Kirkham’s mills adapted to that trade, but by the 20th century, the town was in long-term decline, and found itself the poor relation to the might of industrial Preston to the East and bright and breezy Blackpool to the West.

It nevertheless retained a level of prosperity through the turbulence of the 20th century, boosted by the nearby defence industry (BAE Systems has a vast military aircraft factory at nearby Warton, on the site of a wartime American Air Force base) and also by the desirability of semi-rural life which has made market towns so popular for lifestyle reasons in the later 20th and early 21st centuries.

Nevertheless by the early 2000s Kirkham was beginning to look and feel down on its luck, its high street shops and businesses unable to compete with the double threat of the online world and the giant retail parks of nearby towns.

When, just before the Covid-19 pandemic of 2020-2022, small towns across the UK were invited to bid for funds to regenerate their high streets, Kirkham was an ideal candidate, and was awarded significant government funding aimed at enhancing its town centre as a hub for small businesses and niche retail and leisure whilst also developing community spirit, pride and a greater sense of wellbeing among residents.

It is fair to say the programme has not been plain sailing: the double whammy of the Pandemic followed by the inflationary spike sparked by the Ukraine War caused delays and a big hit to the spending power of the original funding, such that the physical regeneration plans had to be significantly scaled back. The redevelopment of the Market Square into a traffic free events space, and the remodelling of the main street into a more pedestrian-friendly thoroughfare are both projects which will, I believe, greatly enhance the townscape, but in the short term the road works have proved to be lengthy, disruptive and riddled with unforeseen snags and delays, such that the whole project has been an easy target for those who object to it. The loss of what was perceived as a car park - the Market Square - has provoked anger among those who cannot see the bigger picture of how small town centres must evolve if they are to survive and prosper.

So much for the negatives - how about the positives?

Well, the less tangible, but equally important, strands of the regeneration project have been much more successful, and have very much served their purpose of enhancing pride, community spirit and an awareness of local history and heritage.

Moreover, it has been my good fortune to find myself a key player in these aspects. My accidental involvement in local history has caused me to be a de facto curator of the Town’s Local History and Heritage Collection, the remnants of what was once a town museum. This happened because when the owner of that collection, an eminent local historian, died in 2021, his family asked the Parish Church, through me, if they could house and exhibit it. I offered to oversee this project, and set up a small Local History and Heritage Collection in a redeveloped gallery in the church building.  By so doing, I found myself wrongly cast as a local history expert - I always stress that I am an enthusiast, not an expert. I was nevertheless happy to be drawn into various cultural and heritage projects which were being run in the town, funded by the regeneration monies.

These have been pretty successful, providing activities and camaraderie for local people, uncovering some previously hidden talents, creating lasting heirlooms for the town which I am only too glad to help display and care for in the Church’s community rooms.

A tapestry depicting Kirkham’s industrial heritage, created by one of the craft groups

However, early in these projects, a glaringly obvious thing became apparent: virtually all participants were female. Not at all unusual or unexpected, but in this conservative (small ‘c’) community a pretty extreme case: groups involved in things like exercise, local history, gardening, cooking, arts and crafts and so on all flourished thanks to the expertise of facilitators and yet largely failed to attract any male participants. The women participants all reported that their involvement had improved their sense of belonging, made them new connections and friendships, and had generally improved their mental health and sense of wellbeing. A great outcome, indeed a valid return on the investment of public funds, yet one which was only reaching around 50% of the population.

One day, in late 2022, as virtually the only male with any level of involvement in these wellbeing projects - and that only because of my own perceived expertise as an events organiser - I was discussing this issue with one of the (female) facilitators, in the presence of my son (a science teacher at the local high school) and another male friend. My son mentioned what all teachers know, that virtually all voluntary projects attract more girls than boys, and that such reticence on the part of most men is an engrained and lifelong trait, and a potentially harmful thing. Girls and women readily form close friendship ties which engender self-care and mutual support, whereas men and boys tend to do things like sports and hobbies yet without the self-care.

My son mentioned that he had heard of a movement which orginated in Australia called “Men’s Sheds”, whereby a hub is set up in a shed where men can gather and undertake traditionally “male” activities - DIY, model-making etc. - and in so doing they are gently drawn into sharing their concerns, worries, stories and everything in a way that men generally don’t do. At that point, a visitor from Australia overheard us and chipped in with confirmation that Men’s Sheds were indeed very much a thing in her homeland, regarded as a common and effective tool for improving social cohesion and wellbeing. 

A serendipitous overhearing by a visitor to our town, but things have a habit of turning out well if they are meant to be, and so it has proved with Kirkham’s Men’s Shed: following some rather theoretical chat that we could maybe set up a shed locally, we realised that our church possessed a highly suitable brick built shed, well over a hundred years in age, which was used to house gardening equipment for the churchyard and also as a store for anything that the church didn’t dare throw away.  We started to speculate as to whether we could set up our metaphorical shed in this physical shed. 

The Shed: a familiar feature of the churchyard for decades

Then, another stroke of serendipitous good fortune: the Practice Manager at my GP Practice, who knew that I was involved in various community groups, messaged me to say that she had identified a source of NHS funding for new wellbeing projects and wondered whether I was aware of any deserving projects which might be interested in applying. Literally off the top of my head during a phone chat with her, I mentioned our Men's Shed idea, and she was immediately struck by the plan. In healthcare circles, social prescribing is very much in vogue, and with the well-known reticence of men to ask for help and the consequential high prevalence of mental illness, even suicide, among men of all ages, there is a growing feeling that low-key, low cost solutions based in the community have a role to play in addressing this problem. The Practice Manager urged me to apply for funding and promised her strong support. 

It had started to look like an idea worth pursuing, and without anyone actually ever deciding it or appointing us, two individuals emerged with the time, the enthusiasm and the expertise to make it happen: one was me, the other a longstanding friend and associate of mine, a few years younger than me but in fact an ex-pupil from my first year in teaching. His and my paths had crossed in several areas over the years, notably as fellow churchgoers and as committee members of our school’s alumni association, and he is a freelance management consultant and project manager by profession, so a great fit for getting a project up and running.

So, we applied for funds and were duly awarded the full amount on offer. The shed was in a way ready and waiting, although it required a good de-clutter, and we decided to launch the project without delay. This was in June 2023.

Six months on, its success has been remarkable.

The first stage was easy, almost too easy: a number of individuals came forward who were either members of the church congregation or men already known to the church community. Among these were my son, who is one of the churchwardens and was the instigator of the idea and the Vicar, a new incumbent keen to grow and develop the church’s community outreach work. Another was a community “good egg” who was loosely associated with the church and keen to do his bit for the good of others.

However, the real challenge was to reach out to men in the community who were not connected to the church, and who might be beneficiaries in terms of wellbeing, rather than just men wanting to help run a worthy project. A key challenge was to balance the very real involvement and support of the church - we were, after all, using their shed - without people feeling that this was a church group as such. Men are relatively thin on the ground in most church congregations, and are often indifferent or even hostile to the church either as a place of religious acts of worship or as a doer of good works.

So we made it known through various channels, including local GP practices, the Town Council, the town’s football club’s community foundation and so on, and within a very short time, men emerged - some known to us, many entirely new to us. Among them were an elderly widower who had been coming to the church literally every day since losing his wife some six years previously, and who had hitherto kept himself to himself, lighting a candle and spending time alone with his thoughts then returning to his home in nearby Blackpool; a man whose young adult daughter had died suddenly and unexpectedly; a man who had lost most of his sight and been forced to retire early from a job as a DT teacher; several others who had simply lost the confidence to engage with others in later life; and indeed a prisoner from the nearby Open Prison who had been on work placement at the church and was looking to reintegrate himself into more normal social circles as he neared release at the end of a long sentence. We requested and were granted permission for him to attend the Shed meetings on condition that he was back at the prison by a specified time, under our supervision.

A planning meeting in the shed with advisors from local councils,
NHS and AFC Fylde Football Club

Planting wildflowers, June 2024
Tasks started to come our way: a project to transform parts of the churchyard into a wildflower meadow in areas where ancient graves were no longer actively tended by grieving families; another to build some wooden benches to replace damaged and worn out ones in the churchyard; another to carry out a full assessment of the stability of gravestones, a statutary requirement of all churches; another to paint hi-vis strips on some steps around the churchyard which presented a real trip hazard; then perhaps best of all, we were commissioned by the Town Council to design and build a new stable in which to place the Town’s nativity figures in the town centre’s Christmas display.

This latter project was a joy to watch unfold: one man took the lead, designed something, literally on the back of an envelope, and bought the wood. With a tight deadline, others helped out when possible, under his direction, eventually completing it with minutes to spare until the deadline that we had agreed with the Council. 

A beautiful, traditional Crib scene was duly installed in the town centre gardens, unveiled by the Mayor and blessed by the Vicar at a simple ceremony with children from local primary schools, and subsequently admired and appreciated by all.

"All our own work": Kirkham's brand new Nativity Scene

Blessing the crib, December 2023

But best of all, amongst all this busy-ness, are the times through this bleakest of winters when frankly it has been too cold and too dark to do any work and the men have just sat and chatted, exchanging anecdotes and gems of wisdom, chewing the fat over what’s going on in the town or in the world outside - all over a warming cup of tea. No banter, no laddishness, no dirty jokes, none of that dreadful thing which Donald Trump called “locker room talk” in a pathetic attempt to explain away his loathsome misogyny - just a group of men sitting with an unspoken but very real sense of belonging and of camaraderie. One of the original members, a busy family man with no apparent “need” for such a wellbeing project, put it perfectly when he recently said “This was the thing I didn’t even know I needed in my life”

So yes, it’s great to get things done, and the sense of achievement from a shared task or project is enormous, but above all, as the cliché goes: “it’s good to talk”. And if it takes a shed to make men feel able to talk, so be it. Never did simply sitting down feel more productive.

Men at work

For my blog posts, there is always a song to provide a title, and what better than these words from Sit Down, an anthemic hit by forgotten 90s Madchester band James:

Those who feel the breath of sadness

Sit down next to me

Those who find they're touched by madness

Sit down next to me

Those who find themselves ridiculous

Sit down next to me

After all, over these winter months, all we've done is sit down and chat. 

For anyone reading this who works in healthcare, especially in general practice, I cannot overstate the value of Men’s Sheds based on my thoroughly positive, albeit limited experience. Social prescribing may sound like a passing fad, but from what I’ve seen it really can achieve a great deal of good at very little cost.

Keep taking the tablets? Maybe, but why not just Sit down next to me?


In case this post seems somewhat self-congratulatory in tone, I must acknowledge many individuals and organisations who have helped or supported this project:

My son, Nick Long for making me aware of Men's Sheds; project leader Chris Malings; Sue Flowers and her Phoenix Rising Wellbeing Group; Helen Leece from the Gathering Fields Retreats; Ash Tree House GP Practice; the Vicar and PCC of St Michael's Parish Church Kirkham; Kirkham Town Council; Fylde Borough Council; Lancashire County Council; AFC Fylde Community Foundation; and perhaps above all the men who have attended and participated in our activities.

Sunday 3 December 2023

Wait for the Lord: why Advent really matters.

Advent brings into sharp focus the gap between the sacred world and the secular world, yet in so doing also highlights the way in which Christian principles and disciplines can have a value in the secular world.

The way in which society appears genuinely unable to wait for the true joy of Christmas is a source of sadness rather than anger to me. 

So…what are the best words for this day, Advent Sunday?

How about Happy New Year?

In the secular world, we are still four weeks away from saying that, but in the sacred world, those are the correct greetings for today. Today marks the start of the Church’s year, although among those who have no church affiliation, this fact probably passes them by entirely.

But that’s the point of what I’d like to share with you today: the glaring gulf between the sacred and the secular, which is perhaps at its most visible during the season of Advent

My theme in a word? Contrasts. My message in a word? Patience.

Bear with me….

You don’t need me to tell you that the secular world thinks it’s already Christmas, and has been for several weeks. Many houses are displaying trees in windows and lights in gardens. I saw Christmas goods in some shops whilst sweltering in that September heatwave. Christmas ads on TV started weeks ago, and I suffered a distressingly early Whamageddon when enjoying a walk in the sunshine along London’s South Bank as long ago as November 17th: I heard the unmistakeable voice of George Michael and that sleigh bell backing track coming from inside a market stall selling mulled wine. And worse than that, a week later I caught myself singing along with Maria Carey on my car radio. Father, forgive me - I should have changed the station. As a penance, perhaps I should say 20 Maranathas.

The secular world is already bedecked in golds, greens, reds and sparkly tinsel.

But in the sacred world, today we have turned purple, the colour shared with Lent, symbolising restraint and penitence.

Today we enter the beautiful season of Advent - a period in which the church is restrained, dignified and anything but celebratory, jolly and joyful. If we in the church are to be true to ourselves, then for these next four weeks we really are at odds with the secular world in a manner which can be truly challenging. But that shouldn’t stop us addressing that challenge.

Now we have to be pragmatic, and of course in reality, we can’t pretend Christmas isn’t coming. If we are to celebrate and enjoy Christmas, we obviously need to engage in some aspects of it in these weeks leading up to the festival.

Buying and wrapping gifts, sending cards, putting up decorations, planning menus, enjoying concerts, events and parties with our friends and colleagues is all part of Christmas, and clearly that can’t all be done on or after the 25th.

But do we have to completely overlook the notion of a season of preparation, of Advent? The practice of a period of preparation and abstinence in advance of a joyful feast is, after all, common to many other religions, and they are invariably rather better at it than we are - most notably Islam, with Ramadan followed by Eid.

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

As a society, we have become very bad at waiting for anything, at any form of delayed gratification, and I plead as guilty as anyone to this. This sermon risks having a sense of finger pointing, so it’s a good moment to remind myself of that old Sunday School cliché from my childhood - when you point a finger at others, always remember that there are three fingers pointing back at you. I’m as impatient as anyone, and not always very good at waiting. Fast Food, seven-day opening, same-day delivery and Amazon Prime mean that many of us have forgotten what it means to wait for anything.

I grew up in the days of “allow 28 days for delivery”, which these days seems like a joke. Who would wait 28 days for anything?

Yet waiting is, surely, good for us. A bit of imposed patience never did anyone any harm. It’s a given of good parenting not to give in to children’s every “I want”, not to indulge their every wish, for fear of spoiling them, yet we as adults perhaps don’t practise what we preach.

Religion has taught us to believe some pretty daft stuff over the years, and to an extent it still sometimes does. Yet at its heart, Christianity is just love - human decency - laced with a good dose of practical common sense.  Surely we don’t need a government minister to teach us common sense - the Christian faith does it so much better. One of the things which I most appreciate about practising Christianity is the way in which it gives a pattern and a rhythm to our lives which is so in tune with the patterns and rhythms of nature itself, if that doesn’t sound too flaky.

By hijacking pre-Christian, pagan midwinter celebrations, Christianity taps into our need for some light and cheerfulness, “in the bleak midwinter”. And in the context of Advent, by encouraging us to wait patiently for the fun and festivity, it taps into a bit of useful psychology and self-discipline.

Back to Advent Sunday: I said it was the New Year, and what do we do at New Year? We make resolutions. So the Church’s New Year is surely also a good moment for a resolution, and my suggestion - again, to myself as much as to all of us - is that we get a bit better at separating the sacred from the secular, as Advent can and does teach us.

Separating the sacred from the secular is actually often about learning a bit of restraint, and learning to wait. A bit of self-discipline if you like.

Now of course, in order to remain relevant in today’s world, the church needs to embrace the secular world and in so doing to sacrifice some principles and reach some compromises.

Our great cathedrals here in the UK have proved themselves to be spectacularly good at this compromise, throwing their doors open to concerts, conferences, degree ceremonies, exhibitions and goodness knows what else, as well as staging acts of worship for the faithful. A few years ago, Norwich Cathedral had a helter-skelter in its nave for a whole summer season. Chester Cathedral has staged a fabulous model railway exhibition in its South Chancel these past three summers hosted by none other than music impresario-turned train buff Pete Waterman. A few weeks ago I was at Evensong at Newcastle Cathedral and we the congregation were hustled out with unseemly haste because they were preparing the building for that evening’s concert of - I kid you not - “Meat Loaf by Candlelight”.

That’s right, Meat Loaf performed by a rock band in a cathedral nave. I’m pretty sure some of those deans and bishops buried in that cathedral were spinning in their graves that evening to the strains of Bat out of Hell.

Yet secularisation of churches is a necessary, and often a very good thing. Frankly, it helps pay the bills! Only last week, this very  building was transformed into a bustling market place, and Santa Claus, the Patron Saint of Coca Cola, drew hundreds of children and their families into a holy place whose doors they would seldom if ever darken for the purposes of Christian witness. And I am in many ways personally responsible for the increased secular use of this building, having devised and organised concerts, lectures and exhibitions here since I took leadership of the bicentenary programme in 2022.

Yet I would be the first to urge caution and restraint. If we make greater use of our building for secular purposes, we surely need to be even more careful to distinguish between those purposes and the church’s core function as a sacred space for worship. And yes, this means perhaps being more vigilant about how we conduct ourselves within these walls on a Sunday.

I was raised on a behaviour rightly adhered to by traditional churchgoers, succinctly expressed in these words: “before the service, speak to God; during the service; let God speak to you; after the service, speak to each other”.

Simple, old-fashioned, potentially unfriendly, but I still try to adhere to it in my own conduct. In a church like this, the beauty of the place and the organ voluntary are there to help us to do so. If I could ask for one resolution from the people of churchgoers, it would be that we all agreed to prepare for our worship with a period of silent reflection. 

It's about contrast: the contrast between our often hectic and noisy everyday secular world and the sacred world within these walls. And it's also all about patience: waiting for the Lord. And that, above all, is what Advent teaches us. The value of contrasts, and the importance of waiting.

So instead of joining Noddy Holder in shouting “It’s Christmassss!” from December 1st, may I suggest that it’s better for us, and actually more fun, to enjoy Advent for what it is? A season of reflection and anticipation, with its own beautiful words and music. The carols can wait.

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

Today’s gospel told us that the fig tree reminds us that the Lord is near. Near, but not here yet. Let’s learn to Wait for the Lord: our choir can express that better than I can with this familiar Taizé chorus: I invite you to spend these next few minutes in reflection and anticipation while we listen to them.


For the purposes of this post and its title, here's a Spotify link to that hauntingly appropriate Taizé song:

Tuesday 2 May 2023

Come Together: thoughts from the Diabetes UK Professional Conference 2023

I spent two busy but enjoyable days in Liverpool last week attending part of the Diabetes UK Professional Conference, having earlier this year been appointed as Chair of the charity's patient group, the Diabetes Lived Experience Advisory Committee.

I was there as one of three representatives of this group, free to attend any of the lectures and presentations, and to meet and mix with the hundreds of HCPs at all levels who attend this three day event. As its name suggests, the conference is organised first and foremost for healthcare professionals in the field of diabetes care, and over the years it has become very much THE get-together of diabetes HCPs, attended by not only the big names in the field, but also rank and file NHS staff, with places highly valued and sought after. In addition, like any such healthcare gathering, there is the accompanying “trade fair”, at which pharmaceutical and medical technology companies get a chance to display their wares to those whose job is to assess, prescribe, and administer them. It’s an impressive event, administratively and logistically challenging, not to say costly, but my over-riding sense is that it is a hugely worthwhile and successful exercise.

The conference has left two salient points in my mind, and when thoughts such as these get stuck in my mind, it always seems worth sharing them, to see to what extent others feel likewise.

The first is simply the fact that conferences like this are very, very valuable. Sadly, other commitments meant that I could only attend for two days, but my time at Liverpool was more than enough to remind me just how useful and important such events are.

Zoom, Teams and the like were a lifesaver during the pandemic but to experience this flagship conference, happening fully in person for the first time since 2019, was a forceful reminder of the value of face-to-face conferences.

Easily dismissed as "jollies", gatherings of professionals in any field are surely of inestimable value, even if that value is perhaps hard to quantify: As well as the formal content, it was a joy to witness and indeed to be part of the coffee break chats, the lunches, even the after-hours drinks. I always felt that way when I was fortunate enough to attend day or residential conferences and courses during my own working career as a schoolteacher, and I remain as convinced as ever. ”Comparing notes”, even in snatched conversations over a coffee is of immense benefit to anyone in any walk of life, often a precious and reassuring reminder that whatever challenges and difficulties we are facing, someone, somewhere else is also facing it. A problem shared is, indeed, a problem halved.

For me personally, to catch up with so many of the valued friends and acquaintances whom I have been lucky to make among HCPs, diabetes charities and diabetes tech companies was a pleasure.

This brings me neatly to my second point: to what extent should the likes of me, a “patient”, be at an event like this? What, if anything, is the value of lived experience in improving and developing diabetes care?

Over the years, and particularly over the past decade or so, it has become an increasingly accepted wisdom that the voice of lived experience should be front, left and centre at diabetes conferences. A popular hashtag in diabetes social media is #NothingAboutUsWithoutUs, a line borne of frustration from the days when people with diabetes were too often treated like naughty children, their condition described as “poorly controlled” and their attitude as “non-compliant”. In many ways, this goes hand-in-hand with the Language Matters movement, which has done so much to modify stigmatizing terminology used by HCPs and in so doing to also modify attitudes.

So in a sense, it’s the proverbial no-brainer: those living with a condition should indeed have a voice where those who treat it are gathered together. Over the past week, when diabetes social media here in the UK have been full of content about the week’s events in Liverpool, it has been easy to find calls for the lived experience voice to be present at every lecture, discussion or symposium.

Perhaps surprisingly, given my four years of membership of the Diabetes UK Patient group, and my recently adopted position as Chair, I find my enthusiasm for the idea of ubiquitous lived experience participation to be somewhat nuanced, and this worries me. Surely, a strong patient voice is unequivocally a good thing?

Well of course the lived experience voice is a good thing, but I do feel that there is a risk that we overplay the controversy, egged on, perhaps by angry advocates rather than the voice of the majority.

Firstly, because I think there is sometimes a place for humility, for acknowledging that the professionals actually do know best, and that they have a right to meet together and exchange views privately. The loudest voices calling for ubiquitous lived experience involvement are almost by definition those most engaged with and expert in their condition, but few if any have the breadth, depth and variety of experience of HCPs. In my profession - teaching - I was a consistent and sometimes lone voice in advocating student involvement in the teaching and learning process, in the formulation and execution of policies, and especially in assessing and measuring progress. However, to deny altogether that the teacher knows more than the learner is a betrayal of logic: sometimes, teacher does know best.

One of the most absurd pieces of so-called wisdom that gained popularity in some quarters during the run-up to the Brexit vote in 2016 was Michael Gove's “I think the people in this country have had enough of experts”. An example of the damaging populism that drove the political process during that era, Gove's soundbite was both arrogant and delusional. Advanced human society is built upon expertise at every level: “to each according to their need, from each according to their ability” is how a civilised society ensures that we benefit collectively from the specialist skills of others, not least when it comes to healthcare. Far from having had enough of experts, I am deeply grateful for them, and in terms of my own diabetes, I am grateful not only for the pioneering expertise that brought us injectable insulin just over a century ago, but also for the technical expertise of those who have driven such spectacular advances in diabetes technology over the past decade or so. Listening to some of the content in lectures at DUKPC, I was left not so much with a burning desire to be represented, but rather a feeling of humble gratitude that there are people as clever as that working on better ways to treat and care for me.

Now of course there are areas when the patient voice is not just valuable, but crucial, and indeed still under-represented. The emerging area of diabetes psychology springs most readily to mind, where there is surely a vast amount to be learned by professionals listening to the voice of lived experience rather than trying to apply theory to practice. Walk a mile in our shoes before telling us how it feels to  walk in our shoes is surely how diabetes psychology should be applied, and I have heard alarming tales from a friend who lives with a diabetes-related eating disorder of the mis-application of theory in a manner which is counter-productive at best, harmful at worst. So yes, the voice of lived experience can be crucial in advancing the work of experts, but should always be offered and accepted collaboratively, rather than confrontationally.

Indeed I can’t help wondering whether here in the UK at least, we are actually pushing at an open door. In personal terms, what struck me most as I travelled home from Liverpool and reflected on my experience there was how a conference like this one is in fact a wonderful coming together of ALL stakeholders in the world of diabetes. When I had the chance to address the Diabetes UK HCP Council on the eve of the conference about the value of peer support, I was keen to make the point that in the UK, we are uniquely blessed with a diabetes community in which the overwhelming majority of HCPs are already respectful of and receptive to the expertise of their patients. Moreover, the very fact that it is a diabetes charity, not a professional association, which organises this event, is significant: we are exceptionally well served in the UK by our NHS and by our diabetes charities. Who needs angry advocates when we are blessed with the passionate, driven healthcare professionals who have brought about such spectacular advances in technology access for people living with Type One, or charities like Diabetes UK and JDRF who are driven by a passion for improving care and pursuing the elusive cure?

Together at conference: Partha Kar, Diabetes Lead for NHS England
with Karen Addington & Chris Askew,
CEOs of JDRF & Diabetes UK respectively. And me.

DUKPC is, above all else, a collaborative event, a chance for the community to Come Together (there's the customary song title if you click on the link, with a deliberate Beatles/Liverpool slant). A chance for the experts to do their thing, a chance for the companies to sell their wares, a chance for the professionals to hear from their patients where appropriate, and a chance for the charities and support groups to care and share.

Nothing about us without us? Of course the voice of lived experience should be at the centre of diabetes care, but I’m not actually sure that we need to sound quite so angry about it. Maybe, just maybe, diabetes care is an area in which we British are actually quite well served on a global scale, thanks in no small part to the voice of lived experience. The remarkable reach of Flash or CGM - 90% of people living with Type One - has been achieved by passion and determination on the part of HCPs (led by Partha Kar) informed, encouraged and supported by the patient community with which many HCPs have so willingly engaged over the past decade or so.

We in the UK have had much reason to feel rather ashamed and second rate over recent years, and the air of crisis which accompanies the NHS remains a severe and very real cause for concern. But this should not blind us to what has been achieved in the world of diabetes care, especially Type One care, and the fact that this has come about by such a collaborative effort. It was achieved not by shouting at each other and demanding better representation, but rather by a mutual realisation that collaboration and cooperation are almost always how progress is achieved.

The real challenge, and one in which I hope I can play a small part over the coming two years, is to spread this success into care for people living with all types of diabetes. 

Wednesday 1 February 2023

Radio Gaga

It often seems that there are plenty of things for people to get annoyed and upset about these days, and I sense that we're getting too good at getting annoyed. In reality that probably isn't true: it's just that the internet has given us somewhere to express our annoyance, and some people have accepted that gift with tiresome glee.

Some of the things that cause annoyance really do matter - our own wellbeing or that that of our loved ones; questions regarding the morality and integrity of those in positions of power and influence; political policies and decisions; issues specific to our own lives, our families, our workplaces, or our neighbourhood. Other things arouse passions and strong opinions but actually don’t matter at all: most obviously sport and entertainment. The passions and anger that sport generates, if kept proportionate and in check, provide a valuable safety valve for anger and emotions that might otherwise become destructive.

A lot of our anger and frustration is these days termed “First World problems” - things that annoy and frustrate us which are in reality little or no cause for real suffering, and stem from the fact that many of us are spoilt by the relative luxury in which we live compared to previous generations, and to many people in other parts of the world. We should all try to remain aware that a sense of proportion is important regarding whatever is annoying us. 

So with that preamble out of the way, I'm going to write about something that has annoyed me, and by all accounts many others, in recent times and especially in recent weeks: radio, and in particular some changes over recent months to BBC Radio 2, the soundtrack to the lives of so many, and in particular to older adults like me.

The on-air announcement by 71-year-old Ken Bruce that he had chosen to step down from his long-running mid-morning slot on Radio 2 created a surprising amount of response and reaction, and has fed into a narrative which many feel is a pattern since the appointment of a new controller, Helen Thomas. Following soon after the enforced departure of another veteran presenter from a long-held slot, Steve Wright, it is hard to resist the conclusion that Ms Thomas is seeking to lower the average age of presenters, to “update” the prevailing style of music played and hence to target a younger audience.

Ken Bruce

The simplistic reaction is to smile knowlingly and say “that's life, change happens etc”, to leave the baby boomers to whinge about it until they find another radio station playing “their” music and something else to complain about from the comfort of their index-linked pension fuelled lifestyle.

We have, after all, been here before, thirty years ago, when Matthew Bannister took over as controller of Radio One and purged that station of the “Smashy and Nicey” generation which was, like the typical listener of the time, growing older. Then, as now, many listeners reacted with dismay, accused the BBC of ageism and in many cases defected to other, commercial, stations. Nothing lasts forever.

Matthew Bannister's changes came at the start of what proved to be a pivotal time in the history of rock and pop, when the decline of the “hit single”, of “the charts” and later of the purchase of physical music recordings was just starting to be felt. A generation which had grown up with “pop” music, very much their music as opposed to that of their parents and grandparents, was growing older and refusing to grow out of what was thought to be a phenomenon of rebellious youth. Back in the day, older people were like your proverbial granny in Slade's Merry Christmas, Everybody, telling you that “the old songs are the best”, meaning gentle, melodic tunes.

But as we aged, we, the baby boomer generation were, like Noddy Holder's granny, “up and rock and rolling with the rest”. We not only carried on listening to rock and roll, sixties pop, seventies glam rock, punk and new wave, but we also embraced the music being enjoyed by the next generations. This phenomenon was already apparent at the time of Bannister's infamous purge of Radio One, with the Britpop explosion of the mid nineties proving to be the last hurrah of hit singles and physical music recordings, and artists like Oasis, Blur, Pulp, Suede, the Lightning Seeds and many others, not to mention teen idols like The Spice Girls, Take That and Boyzone producing songs which owed everything to the sixties and seventies, and appealed to kids, parents and grandparents alike.

And that's where it started to get complicated: Bannister's purge of the DLTs, the Tony Blackburns, the Simon Bates, the Steve Wrights of this world sent them to Radio 2 or to commercial radio, and there they might have stayed, endlessly recycling their fab and groovy hits to an ageing audience, were it not for the for the fact that the older generation was still liking the new stuff, and the younger generation was liking the old stuff.

My own children grew up listening to my 60s, 70s and 80s CD collection, and rather than thinking of it as “old people's music”, they loved it just as I had done at their age. Music by The Beatles, The Stones, The Eagles, Queen, Fleetwood Mac, The Bee Gees, Abba, Motown, 80s power ballads - all from before their time - became as much a soundtrack to their lives as it had been to mine. And meanwhile, I was embracing artists like all the above mentioned Britpop, Coldplay, Kaiser Chiefs, Keane, Amy Winehouse, Adele, The Killers and many more, whilst artists from my younger years were in many cases still releasing new material which appealed to all ages. Moreover, anthemic songs like We are the Champions, Hi Ho Silver Lining, Is this the way to Amarillo, Rockin' all over the World, Hey Jude and above all Sweet Caroline have acquired a ubiquity which few would have foreseen at the time of their original release. Known and sung, word perfectly, by people aged 5 to 95, at weddings, football matches and other joyous gatherings.

Musical tastes, which had in my youth created a very real divide between me and my parents, was now a powerful bond between me and my kids.

And so to 2023, and the fate of BBC Radio 2. Helen Thomas may think that she is refreshing Radio 2 and reaching out to a younger demographic. Maybe she is, but to base decision-making on what seems increasingly like a laughably outdated understanding of musical tastes and sociological behaviours seems to me and to many people of ALL ages to be a very short-sighted, simplistic and potentially deeply harmful way of proceeding, especially given the BBCs historic remit as a kind of embodiment of British values and culture.

Yes, Steve Wright and Ken Bruce are getting on in years, but their fans stretch back into a far younger demographic. Wright may be old, he may have the look of a recluse, but his youthful voice, his mastery of the zoo format radio that he pioneered and his catholic taste in music provided a perfect soundtrack to the working week for millions, of all ages. His sidekicks Tim Smith and Janey Lee Grace were also intuitively real, and provided a wonderful antidote to Wright's persona. Wright himself was not only a very good interviewer of celebrity guests, but also had enough self-awareness to send himself up with the whole “DJ Silly boi” and  no ‘g' thing which heralded the end of the working week in such joyful style. His somewhat predictable humour, his catchphrases and idiosyncracies had the air of the embarrassing uncle - a bit weird, sometimes a bit cringe worthy, possibly even a bit creepy, but nevertheless much loved and somehow very reassuring.

Ken Bruce may be a portly bald-headed septuagenarian, but he has his finger on the pulse of how middle England in its broadest sense thinks and feels. Through the difficult and isolating days of Covid lockdowns, he, like many, was “working from home” with the perfect blend of awareness of collective suffering yet also of the need to chivvy us all along. And his musical tastes are absolutely not stuck in the past: he has embraced and promoted good music from every era, valuing and cherishing the best of the past alongside all the good stuff which is still emerging in the fields of pop and rock.

The BBC hasn't yet admitted it, but it is abundantly clear that Scott Mills has been a disaster in Steve Wright's former slot. An ageing DJ with no intuitive feel for his audience's taste, he comes across like a man embarrassingly refusing to admit he's past it. His show feels like an awkward warm up set in Magaluf done by a superannuated mobile DJ hoping nobody will notice his paunch and his wrinkles. When I hear Scott Mills, I always have a mental picture of a man wearing a backwards baseball cap in a desperate attempt to look down with the kids.

Steve Wright and his successor Scott Mills

Sadly, Radio 2 is collectively heading down the same road. Zoe Ball comes across as far too matey with her guests and co-presenters, leaving the listener feeling left out rather than included. Her predecessor Chris Evans, despite his millionnaire lifestyle and hell raiser past, felt more like “one of us”. Sara Cox, too, has started to sound a little desperate, putting on silly voices in the hope that it will sound cool in an ironic post-modern way, but unfortunately she just sounds - well, silly.

But of course  these days, I seldom listen to any of them. Like many others, I have moved to Greatest Hits Radio, where I await the triumphant arrival of Ken Bruce in a few weeks' time. Their advertising department must be rubbing its hands with glee as ratings and hence revenues soar.

On Greatest Hits, I have rediscovered Simon Mayo, himself lost to Radio 2 some years ago, but still relaxed and effortlessly on trend, in touch with the zeitgeist and the lives of ordinary people in a way that Scott Mills simply isn't. Mayo comes across as a cool ageing man at ease with, but not obsessed by, his age. Ken Bruce and Steve Wright share that trait of character, which was in many ways the essence of Radio 2 in recent decades .

So there I am, a disgruntled older man, moaning about change. I offer two points in mitigation before I shut up:

The first is this: the knowledge that my “disgruntledness” (a good word if it doesn't exist) is shared by millions, including many much younger than me. My thirtysomething, gay, Labour-voting, Brexit-hating daughter agrees with everything that I say on this topic. She's millennial to the core, yet resents Scott Mills and all that he represents with a passion. And I know many of her generation and even younger who feel the same way.

The second is this: that I do NOT want to hear just music of the 60s/70s/80s. I love plenty of music from the past 30 years. Radio 2 in the 21st century had become a place where “music of the future and music of the past” were played and promoted in equal measure. My one gripe with Greatest Hits Radio, if it is to be my new home, is the obsession with the musical past. Perhaps Ken Bruce could fix this when he joins.

And do you know what? My daughter even agrees with me on that last point

So please, can someone at the BBC see sense before they alienate and lose several generations all at once? National, commercial-free radio is our friend, a medium of unique value, and used wisely is a wonderfully unifying glue to an increasingly fragmented society. Divisive ageism is not the way forward, indeed it is - irony of ironies - hopelessly outdated.

Let's leave the last word about all this Radio Gaga to Freddie Mercury, who, had he not been taken from us too soon, would now be an old man of 76. Old peoples' music? I don't think so...

Let's hope you never leave, old friend

Like all good things, on you we depend

So stick around, 'cause we might miss you

When we grow tired of all this visual

You had your time, you had the power

You've yet to have your finest hour

Go Your Own Way

  I developed Type One Diabetes just over 26 years ago, in December 1997. I have often said that it was a good moment to join that “club tha...