Monday, 13 July 2020

"He ain't heavy, he's my brother" - who cares for the carers?

Photo Collage by my friend Lis Warren

It is self-evident to say that we are living through strange and troubling times: you need to be over 80 to have any significant recollection of the Second World War, so for most of us, the COVID-19 pandemic and its associated lockdown is by some distance the most significant, disruptive and worrying collective experience of our lives. We must, of course, be careful not to overstate its impact upon us or our own level of suffering and deprivation: those of us fortunate enough to have unaffected income, a home with outdoor space and the company of others, together with the means and ability to connect with others through the online world should not be tempted too much into the realms of self-pity.  The privations and worries of our grandparents in wartime were infinitely greater.

If we and our loved ones have not (yet) succumbed to the illness, all that has really happened to us is that we have stayed at home, saved a lot of discretionary expenditure on leisure activities and tended our homes and gardens to within an inch of their lives. My own extensive garden has never been so well tended, many of the boxes which were dumped in the loft or the garage when we moved house three years ago have been tidied and sorted, and many a neglected DIY task has been sorted. So despite occasionally feeling sorry for myself, reflecting on missed outings and holidays, friends and family not seen, I have (so far) little to complain about.

Yet for many, it is not so. In the UK alone, a horrendous death toll means that there are tens of thousands mourning the premature loss of a loved one, and tens of thousands more are still struggling to overcome the lingering and in some cases life-changing consequences of COVID-19.

And whilst I, and many others, have had to do no more than just stay at home and forego some discretionary pleasures, many others have seen their workload increase, their working conditions and practices changed beyond recognition and the level of stress and strain hugely increased.

There has been, quite rightly, much said and done to recognise the efforts of our so-called “key workers”, most obviously in the health and social care sectors, but also those who provide our essential needs - the shop workers, the delivery drivers, the teachers, the IT people who have kept the internet running seamlessly, the refuse collectors, those in the media who have kept us informed and entertained - the list is endless. The very least that the rest of us could do was to stand on our doorsteps every Thursday and applaud, however much that at times felt like a rather empty “look at me” gesture, akin to the way in which some feel compelled to modify their social media profile picture in response to some cause or other.

It is, of course, far too early for anyone to write the history of the pandemic, not least as it hasn’t even reached its peak globally, and remains a significant threat locally here in the UK. However, I hope that when we are able to look back on 2020 - let’s hope it is only 2020 - we may at least be able to see it as the start of a more caring society compared to that which appeared to have been evolving in the “take back control” and “America first” world of the past decade or so. Surely, if we have learned anything from the pandemic, it is that there absolutely IS such a thing as society, whatever the late Mrs T meant by her notorious “no such thing” line. We have seen a relatively young Prime Minister, the Heir to the Throne, the Health Secretary and the Chief Medical Officer all laid low by the infection in a manner which reminded us that in the face of a virulent disease, we are all in equal need of the expertise of doctors but equally the care and dedication of all who work in healthcare, from the consultant to the ward cleaner.

We are all links in a very long and fragile chain. Advanced human society is built upon each and every one of us performing a particular and specialised role, and therefore depending on others who perform another equally specialised role, and those upon whom we depend are often those whose role is most easily overlooked - until they are unable to do it.

I remember once hearing - on an “Understanding Industry” course - that in any organisation, the person whose absence is most immediately noticed is not the person at the top, but rather those supposedly at the bottom. In a school, the Caretaker’s absence would be immediately noticed, as it’s he or she who opens the building at the crack of dawn. A Headteacher could be absent for several days without any pupil noticing. In a hospital, the consultant surgeon cannot do her or his job if the laundry people haven’t provided clean scrubs. One could make similar points about every workplace or organisation.

Of course, we must not from this conclude that those at the top - the leaders, the experts, the bosses - don’t matter as much as the rank and file. Of course they do, and surely another thing that we have learned from the pandemic is that we have not, as some tried to argue at the time of the EU Referendum, “had enough of experts”. We need our experts and wise leadership more than ever.

But what we do all need is to CARE for and about each other.

There’s a commonly used Latin expression Quis custodiet…, abbreviated from Quis custodiet ipsos custodes which rightly asks “who keeps an eye on the guards?”, reminding us that even those who supposedly act in our interest should themselves be held to account.

Well equally importantly at all times, and especially of late, is “who cares for the carers?” It’s a very pertinent question: my son once put it very well by saying “Who gives Father Christmas a Christmas present?”

We are all enormously indebted to carers in the broadest sense at present, be they experts working on the longed-for vaccine, scientists and politicians trying to figure out what it is safe and prudent to do when, van drivers bringing our online orders, nurses and doctors tending the sick, pharmacists keeping us supplied with our life-preserving medication, charity employees and volunteers keeping their vital work going in the face of devastating loss of income, but equally importantly the millions doing their ordinary jobs: people like my son and younger daughter working in their schools or my elder daughter helping to keep a major university's life and vibrancy going in the post-corona world, or volunteers like my wife sewing scrubs and masks for the NHS, or a friend of mine who lives with Stage 4 cancer and is using her online voice to campaign for the resumption of full diagnosis and cancer care for others. Then there are also all those whom I have seen and heard just quietly doing their bit, maybe by helping those being shielded, sharing fun stuff online or generally just being kind. These, in the broadest sense, are the carers.

So we must all remember to care for the carers. They are not heroes, and they have no superpowers. They are just human beings, with the same frailty, doubt, guilt, imposter syndrome and anxiousness that we all feel at times. I was moved to write this post after seeing evidence of such things in the much-maligned but essential world of social media. I have in recent times spoken with friends who are on the proverbial frontline and I have seen from their social media posts, public and private, first-hand evidence of the stresses and strains of their lives and work. I have also seen honest online expressions of self-doubt from an eminent NHS consultant and from a friend who is a tireless and enthusiastic advocate for others living with diabetes, who suddenly found herself creaking under the strain. Equally importantly I have seen evidence of supportive acts of kindness towards these people: I have seen those who give care being cared for, and it is surely very important that we all remember that they too have their needs.

So this post is for the carers. It has been my pleasure and privilege in recent years to become friends with many who work in the NHS as doctors and nurses, thanks to my small involvement in the diabetes community, and I have watched in awe as these people - if you are reading this you know who you are - not just do their jobs, but go way beyond the call of duty to ensure that the rest of us are cared for.

My Latin teacher wife thinks that Quis curabit ipsos curatores just about works as a Latin motto for “who cares for the carers?” so there’s a good title, but being me, I also need a song title for this post. How about the Hollies’ 1969 classic He ain’t heavy, he’s my brother. It immediately came to my mind when I saw that much-shared picture of a black man carrying an injured white counter-demonstrator at the "Black Lives Matter" demonstration a few weeks ago. 

It’s a wonderful song, an entire sermon in 4 ½ minutes, all about sharing the burdens of others. 

He ain't heavy - He's my brother

Monday, 29 June 2020

“A Little bit More” - it's all about the Bolus

It’s been a while since I posted anything about diabetes; there’s been a veritable pandemic of words and opinions throughout the Coronavirus emergency, and I have many times in recent months turned off the TV, closed or muted a person or a conversation on Twitter or just cut short a real life conversation because I am so exasperated by a surfeit of half-baked opinion.  I am, therefore, cautious to write and post anything, let alone anything medical, but if you’ll bear with me on this one, it will get to diabetes and has no direct relevance to COVID-19. 

The train of thought leading to this post started with one of the many really bad flare-ups of hay fever which I have experienced this year. Apparently, like nearly everything, the exceptionally bad hay fever experienced by many of us in 2020 can be traced back to COVID-19, in that the (very welcome) lowering of pollution, caused by the lack of road traffic, caused by the lockdown, caused by the COVID-19 pandemic, has allowed the pollen to run riot in the less polluted atmosphere. Such is the chaos theory in practice that we have all experienced this year.

Sodium Cromoglicate eye drops
I tweeted something about bad hay fever a couple of weeks ago, and was grateful to receive much sympathy and helpful advice from friends and strangers alike. Among the suggestions was that I should try antihistamine eye drops containing Sodium Cromoglicate, a mast cell stabiliser; I had previously used standard eye drops, which provide only symptomatic relief for itchy eyes. I bought some drops of the suggested type, started using them and found that not only did they relieve the itchy eyes which are such a distressing part of hay fever, but that they also suppressed other hay fever symptoms, in particular sneezing.

This made me take to Dr Google: do eye drops enter the bloodstream and therefore act on symptoms other than the eyes themselves? I was aware, from all the COVID-19 “don’t touch your face” talk, that the eyes are a potential entry route for infections, so perhaps I shouldn’t have been surprised to find, quite readily, that the eyes are indeed a route into the bloodstream:

“When you put drops in your eye, the drops can become “pumped” into the tear system if you blink. Once in contact with the vascular nasal mucosa, relatively rapid absorption of drugs into the bloodstream can occur. The drops can act as a systemic “bolus” - an infusion of the drug into the bloodstream.”[1]

There you are - I said I’d get to diabetes! The word “bolus” jumped out of that sentence from a medical website, and - perhaps like many not medically qualified people - I was surprised to see it, apparently in a new context. “Bolus” is a word all too familiar to those of us whose lives are sustained by insulin, so familiar that I had never really thought much about any wider use of the word. However, look up the word and you’ll find a definition such as this:

“a single, relatively large, quantity of a substance, usually one intended for therapeutic use, such as a bolus dose of a drug injected intravenously.”

So it’s not just we people with diabetes who bolus! I hope that other non-HCP readers will react in the same way, otherwise this blog post is an embarrassing confession of ignorance.

Being a linguist by trade, my reaction to having a word brought to my attention is to think about and research its etymology. So again, I turned to the internet to discover that the word bolus is, as expected, of Greek via Latin origin and originally meant a clod or lump of earth. Some sources suggest a connection to the English word ball, but that is far from clear.

So there you have it: that familiar word bolus is so called because we are injecting or pumping a “lump” of insulin into our bodies. It gets even better if you know the etymology of the word “dose”, because that word actually comes from the Greek word for “gift”. I love the idea - especially as it was gifted, not monetised, by Banting et al - that we inject a gifted clod of insulin!

So what about bolusing? Well for me, it is one of the arts of diabetes management at which I have become increasingly skilled, but at which I am still a long way from being proficient, and never will be. I, along with the vast majority of people with Type One diabetes, rely on injection pens for the administration of insulin (I am miles away from fulfilling any criteria for a pump), so bolusing remains for me a relatively unsophisticated - dare I say hit and miss - process of trying to whack the mole, ideally before the mole pops up. ( where did that “whack-a-mole" analogy come from??)

I make no claim to being an expert in diabetes; quite the reverse, in fact, compared to many whom I have come to know through the online diabetes community, but I have certainly become more confident in the art of effective bolusing in recent years.

For me, two aspects of bolusing stand out.

Firstly, the timing of bolus injections of fast-acting insulin prior to eating: I was taught at diagnosis, nearly 23 years ago, that the injection of fast-acting should be just before eating (“wait until the food is on the table”) and for years I feared some kind of humiliating loss of sense and dignity if my food was delayed for more than a few minutes. However, in recent years, I have realised that for me, a bolus dose is most effective if taken well in advance - sometimes up to an hour, especially at breakfast time.

Secondly, correction doses: I used to be very cautious about injecting between meals, but these days, I willingly inject in response to a rising level, or ahead of a snack-attack. The result of this is that I almost always have more than the theoretical three doses of fast-acting a day.

I will add two very important caveats to this. Firstly that freedom to bolus with such relative recklessness is dependent on always wearing some form of CGM, which for me is the NHS funded Freestyle Libre. I have said it many times, but the ability to know more than just a snapshot BG value, but rather a clear indication of direction of travel, is life-changing. Secondly, that I am fortunate enough to be retired and therefore more in control of my time and activities than someone in a busy working life. When I was working, there wasn’t time to pre-bolus or correct, nor was the timing or nature of my midday meal in any way predictable.

I am well aware that my mastery of bolusing will never be perfect, and indeed that it could be far better with the help of an insulin pump and associated looping technology, but I am nevertheless grateful to the incremental improvement of knowledge gained through the online diabetes community, a better-late-than-never DAFNE course and of course the advice of  HCPs.

And having discovered the etymology of bolus, I am most grateful that I am able to indulge in bit of constructive mud-slinging – throwing a little bit more insulin into my body. There’s the customary song title for my post, a memory for those old enough to remember it, from that long, hot summer of 1976.

DISCLAIMER: Injecting insulin is a responsibility placed upon everyone who lives with Type One diabetes, and requires knowledge and caution. Nobody should modify dosage and timing without careful consideration of all the multiple factors affecting blood sugar levels and any changes to the timing and dosage should only be made with professional advice and guidance.

Friday, 10 April 2020

My Song is Love Unknown - is there anything good about Good Friday?

This is an update of a piece I originally wrote in 2015 and have edited and re-posted once already. I make no apologies for doing so again, not least because the bizarre and unforeseen circumstances in which we find ourselves for Holy Week and Easter 2020 have given more people the time to sit and read.

More importantly, we are all being forced to confront the painful reality that our world is one in which suffering, pain and loss are an inevitable part of our existence, and that if we naively believe that "all will be well", we will inevitably be disappointed. It's a cruel world, and to turn in anger on "God" and say "if there is a God, why does he let bad things happen?" is futile. My concept of God is of an abstract force for good, not some sort of guardian against bad stuff, and for me, Good Friday gives a powerful reminder of that reality.

The combination of a national and international lockdown with the week in which we remember the death of Jesus gives good cause to ponder the meaning of it all, and to question whether religion has any useful part to play in our lives. If you object to religion, it's perhaps best to stop reading now. However, if you can bear with me, you might just come to see that being religious doesn’t mean you’re opinionated, self-righteous, and in-your-face, or that you necessarily have to believe in implausible miracles. 

Today is known as Good Friday, and we would all be forgiven for hollow sarcastic laughter at that thought - not much good about this particular Friday, is there? Good Friday commemorates what was surely one of the most significant events in human history, and a notably horrific event, yet its meaning and significance are increasingly forgotten, at least in our increasingly secular country.

For me as a unitarian Christian, the whole business of Jesus’s death and resurrection is complicated. Many people now pay little attention to the traditional meaning of Good Friday and Easter, yet nobody can deny that the events of what we call Holy Week are as significant as any in the history of mankind. The fact that we are eating hot cross buns today and chocolate eggs on Sunday is a direct consequence of our commemoration of those events 2000 years ago.

If you are a follower of Jesus Christ, the events of Holy Week and Easter are pretty hard to deal with. The day on which the hero of our belief system was cruelly and violently put to death by a tyrannical occupying power is called, in English at least, “Good”. As if that’s not bad enough, Christians are then taught to believe that he did it “for their sake” and that he then rose from the dead, thereby defying the one certainty in life: death. According to many, that’s what’s “good” about Good Friday – the idea that Jesus “died to make us good”, to quote C F Alexander’s wonderful hymn, “There is a Green Hill far Away”. My own brand of Christianity really struggles with the idea that someone else had to suffer and die for my sake, and much as I love that hymn, I find the words very hard to identify with, and any notion of Good Friday being a good thing because of an act of self-sacrifice doesn't work for me.

Actually, calling it “Good” is a largely English-speaking oddity. Most other languages have a different term, most commonly some variant on the word “Holy” – in French, for example, it is “Vendredi Saint”. Of the major European languages, only Dutch – which is the living language closest to English in many ways – uses the term “good”: “Goede Vrijdag”. I actually think the German term is pretty apt in terms of telling us what happened: Karfreitag – which means Sorrowful or Suffering Friday.

Whatever you call it, it wasn’t a very good day for Jesus and his followers. They would have taken some convincing, at the end of that terrible day, that what he went through was in any way good. I too struggle to see what’s good about the cruel and horrible death of a patently good man.

As a Unitarian, I certainly don’t accept the idea that we are all inherently sinful and need someone to suffer and die in order to save us. I believe that we human beings are all capable of the most terrible sins, but that’s not the same thing as being sinful, and I certainly believe that our salvation lies in our own hands, not those of an innocent man. So in that sense, there is nothing good about Good Friday for me.

However, I have an aversion to well-meaning attempts to manipulate language to make it match literal truths. After all, Easter is a term derived from the name of a pagan goddess of Spring and fertility, so at one level I’m happy to accept Good Friday as “just a name” for an important day.

Yet the idea that today is a good day because it recognises the good thing that Jesus did for us is not necessarily the correct explanation for the name of the day. Another very plausible explanation comes from the fact that the words “good” and “God” are often interchangeable in the English language. We need look no further than the word “goodbye”, which means “God with you” (God-by-ye) for proof of that. So if we accept this explanation for the term, “God Friday” is perhaps a little easier to accept.

I certainly prefer this explanation: to call it God’s day is much easier for me to accept, in that my own interpretation of God is that it simply means “good”. My concept of God is not as an omnipotent father-figure and creator who ordains all that is, was and shall be, but rather that “God” means all that is good in the world. After all, it is commonly observed that there is only one letter of difference between God and good, and also only one letter of difference between devil and evil. Etymologists rightly point out that this is probably just a neat coincidence, but it certainly suits me to believe that “God” can simply mean all that is good in the world, while “devil” can simply mean all that is bad in the world.

Jesus’s death, and especially the manner in which he was condemned by a fickle and baying mob, was surely the work of the devil – of evil. No different from many other acts of betrayal and violence throughout history. But it is my view that wherever there is evil, good is never far away, and good always has the last word. Time and again, when something dreadful happens in our world, we are left to despair of humankind’s capacity for evil. Yet invariably, and especially if we look for it, there is a response which is good, although you often have to look harder for it, because the media prefer bad news to good news. There are so many examples, but one that always sticks in my mind is the way in which the family of 12-year-old Tim Parry, the boy killed by an IRA bomb in Warrington in 1993, used his death and that of 3-year-old Johnathan Ball in the same incident as a catalyst to set up a peace foundation, contributing in no small measure to the eventual end of the IRA bombing campaign and the start of the Ulster peace process. I could quote numerous other stories from throughout history to make the same point. Good – or God – had the last word.

So instead of despairing when something dreadful happens in our world, and bemoaning the absence of God at such times, perhaps we should look for the good – the God – which is always there to respond, to comfort and to heal. And in that respect, Good Friday is aptly named, in that however hard it must have been to believe it at the time, God (or good) was not far away. Good Friday comes just two days before we remember that even if the physical Jesus was put to death, his spirit, his values and his example of how to live a good life continued to shine in an at times dark and evil world, and still do so to this day.

So Good Friday is indeed good in a strange way, if only as a reminder that however evil our world may seem, good is never very far away and always has the last word. And my chosen title, My Song is Love Unknown, sums up all that the life and death of Jesus means in our sad world: “Love to the loveless shown that they might lovely be” seems a pretty good summary of what he was trying to achieve, and to attempt in our own small way to do likewise is the least we can do to honour his memory.

Wednesday, 1 April 2020

Urged and inspired us, cheered us on our way: Kirkham Grammar School Founders' Day

Kirkham Grammar School Founders’ Day
Today, Wednesday April 1st 2020, at 2:30pm Kirkham Grammar School would have been holding its annual Founders’ Day Commemoration Service at St Michael’s Parish Church.
Founders’ Day is an occasion on which the school community reflects on and gives thanks for its long and distinguished history, whilst remembering in particular those who over the years have been supporters and benefactors of the School.
Holding the service in St Michael’s Church gives an appropriate reminder of the School’s earliest origins and its continuing links with the church: KGS was founded in the Sixteenth Century as a chantry school in the church grounds, in all probability before the stated founding date of 1549. For the next four hundred years, the School was situated next to the Church and the lives and work of the two institutions were firmly intertwined. The School moved to its present buildings in 1910 but has retained close links with the St Michael’s.

The Founders’ Day Service is actually a relatively recent tradition: it was instituted after the Second World War as an end-of-term event perhaps comparable to a modern Open Day, in that it was an opportunity for the School to display to the public something of its life and work and to celebrate all that it stands for. The day used to feature an inspection of the Cadet Force followed by a public parade of cadets to the Church, and the service was followed in the afternoon by a School against Old Boys cricket match.
The first recorded occurrence was on Saturday 26th July 1947, when the then newly appointed Headmaster Mr Dennis Norwood instituted the event as an end-of-term celebration of the School’s heritage. This extract from the newly-formed General School Committee in May 1947 shows the new Headmaster’s plans for the day.

In modern times, Founders’ Day has become a service of thanksgiving, normally held on the last Wednesday of the Spring Term, at which the school community gathers for a short act of worship, with music led by its choir, an address by a guest preacher and an act of thanksgiving for the School’s benefactors read by the Headmaster:
The names of those benefactors whose names are read out are somehow evocative of the school’s long and distinguished history: Thomas Clifton, Isabel Birly, Cuthbert Clifton, Thomas Westby, John Parker, Thomas Langtree, Thomas Hesketh, Arthur Greenacres, Henry Colborne, James Barker and William Grimbaldeston.
These names all have a role in the history of the school which is recorded by history, most notably Henry Colborne, whose bequest left in trust with the Drapers’ Company of the City of London in the seventeenth century led to the longstanding and still flourishing connection with the Drapers. Perhaps the most colourful story relates to Isabell Birly, daughter of a Kirkham alehouse keeper who apparently saved the school from falling into disrepair in the year 1621 with a donation of £30 (then a substantial gift) which she brought to the school authorities in her apron. 
Like so much else in our lives, today's Founders’ Day has fallen victim to the Coronavirus pandemic, along with the whole routine and rhythm of school life: like all schools in the UK and across much of the world, KGS is closed for normal teaching and learning for the immediate future, with pupils and teachers adapting to distance learning, and the school campus deserted other than for a handful of children of key workers. Public examinations have been cancelled leaving the GCSE and A-Level cohorts uncertain of their fate, and deprived of the bittersweet rituals of the end of their school days, with celebrations such as the Fifth Year Party and the Sixth Form Ball postponed to an as yet unplanned future date.
Founders’ Day is a perfect opportunity for all in the present and past school community - pupils, parents, teaching and non-teaching staff - to pause, reflect and give thanks for being part of an ancient, loved and resilient community. In its 470+ year existence, the School has been through difficult times and always emerged in the long term even stronger and wiser, and will do so again.
Let’s all take a moment today to pray for our well-loved school, to give thanks for the leadership and energy being demonstrated by the Headmaster Dan Berry and his staff, as well as the guidance and support of the Governing Body.
I have also always thought that on Founders’ Day, every pupil past and present should perhaps take a moment to give thanks for the financial and other sacrifices made by their own families to give them such a special education. We too easily take our schooling for granted, and I think many Old Kirkhamians will echo the thought that we appreciate and love the School even more as the years go by.
Since 1999, the Founders' Day Service has concluded with the School’s adopted hymn, the much-loved Lord for the Years. We're not singing it today, but here it is on YouTube - watch, enjoy and reflect on those words.

And in case you haven't seen it before, here is a link to a blog post I wrote a few years ago about Lord for the Years.

Tuesday, 10 March 2020

Everything I Own - an updated tribute to my father, 100 years on from his birth.

March 10th, 2020, marks the centenary of the birth of my late father Arthur John Long. He died at the age of 86 in December 2006, so sadly didn’t live to see his 100th birthday. I am re-editing and re-posting this tribute on what would have been the eve of that birthday - a landmark worthy of some reflection.

My father in 1983, at about the age I am now
To the wider world, Arthur was a much loved and respected elder statesman of the Unitarian movement, and a leading expert on the history of liberal Christian theology, but to me and my brother Chris, he was Dad. To my wife Sue and Chris’s wife Michelle, he was a caring father-in-law Arthur and to his four grandchildren, Felicity, Nick, Rosie and Natalie he was just Grandpa. However, what struck me at the time of his death, when I read and heard public tributes to him, is that unlike many people with a public persona,  the public and the private man were no different. And as the years roll on, I am increasingly aware of the extent to which I inherited from  him far more than a striking physical resemblance.

Born in 1920, Arthur was one of four children of the Revd. Walter Long - my grandpa -  himself an eminent Unitarian minister in London, who was President of the General Assembly of Unitarian and Free Christian Churches in 1963. Walter was a teetotal, firebrand socialist nonconformist of the old school, and having recently uncovered some hitherto forgotten documents and archives relating to his life and work, I am even more struck by his work and achievements. Walter was in effect a social worker in a dog collar, whose work for the people, especially the children, who attended Bell Street Mission in Marylebone, reflected his values and ideals. Chris and I knew him as a cheery, benign old man, like a cliché grandad from a Ladybird book - he looked about 90 when he was around 50 - but a glance at the press cuttings from his life reveal a man of deep commitment to improving the lot of the poor through putting Christian principles into action. Accounts of the holidays he and his wife Amy ran for deprived London children at Bruce Cottage in Bognor Regis are a joy to read.

Last year, it was a huge pleasure and privilege to organise a family reunion to celebrate the centenary of Walter and Amy’s marriage, at which we gathered virtually all their surviving descendants and their families, including their surviving son, Peter. I wrote an account of it here:

Arthur added to these qualities and values which he inherited from his father the scholarly mind and conciliatory instincts which made him a lifelong ecumenist, who strove throughout his long and distinguished career to bridge the gap between Unitarianism’s more radical tendencies and the mainstream Christian churches. The Unitarian Christian Association is very much part of his legacy.

Here, briefly, are the factual details of his life: Arthur was born in Loughborough, while his father was Minister to that congregation, but he grew up in Wembley, living much of his childhood in the shadow of the old Empire Stadium. I remember seeing those towering white walls over the railway line which ran past the end of their garden. He was the first of four children, with two younger brothers, Ronald and Peter, and a younger sister, Joyce.

Arthur was educated at Wembley County School and won a place at Exeter College, Oxford in the days when county grammar school boys were still a rarity at Oxford Colleges. Although he himself always admitted to having felt somewhat out of place at Oxford, he in fact blazed a trail at Exeter College which was followed by his younger brother, and then by his son (myself), granddaughter and two nephews. Few families can claim such broad and prolonged association with a single college.

He trained for the Ministry at Manchester (now Harris-Manchester) College, and took up a Hibbert Scholarship at New College, Edinburgh, then served long and effective ministries in London and Lancashire. His lengthy ministry at Unity Church, Bolton coincided with a period of great social and economic upheaval and hardship in the Lancashire cotton towns, but he kept the church there in its traditional place at the heart of the community. In those days in industrial Lancashire, the local church of whatever denomination was in effect the parish church to those who lived in its shadow and that of the Lowryesque cotton mills. We lived our childhood in a real-life Lowry painting.

The locals just thought of him as “the Vicar”, and Chris and I were known as “the Vicar’s boys”, especially if we did anything naughty - heinous crimes like riding a go-kart down the street in a reckless manner.

He may not have been the Vicar as such, but our childhood was awash with vicars, priests and nuns. Always an enthusiast for ecumenism (an “ecumaniac”, to use a term coined at his funeral by one of his protégés Revd. Jeff Gould), Arthur was for thirteen years Secretary of the Bolton Council of Churches, in which role he enjoyed warm and active relationships with all shades of the Christian community in Bolton. Our childhood memories are of incessantly answering the door or the telephone to clergy of all shades of Christianity, and it was only in later life that I came to realise how unusual and precious such inter-denominational cooperation was.

Whilst ministering among the people of a working class Lancashire community, presiding over a church which was very much a social centre as well as a place of worship, he was like his father a social worker in a very poor part of the town. He wrote and produced an annual pantomime, starring members of the congregation - very much a highlight of the social calendar, and loved organising social events. He once organised a complete “mock wedding”, at which members of the congregation took all the parts of a traditional wedding, took vows in church, then enjoyed a reception and party in the Church Hall. He took the congregation away for a fun weekend at Hucklow, and in every way cared deeply about their welfare. More than once, he interrupted family holidays to return home to conduct a funeral of a loyal member of the congregation.

Yet he was also an awesomely erudite thinker and writer. Arthur developed a career in theological academia alongside his day job in Bolton, firstly as a tutor, then as Principal of Unitarian College, Manchester, a training college for the Unitarian Ministry. In this role, which he took up in 1975, his ecumenical instincts again came to the fore when he brought the College into the inter-denominational Northern Federation for Training in Ministry in 1984. Through his broad outlook, he brought a Unitarian perspective into the wider theological community, and was appointed as an Honorary Lecturer in the Department of Religions and Theology at Manchester University.

He enjoyed the academic phase of his career every bit as much as he has enjoyed ministering to working class folk in Bolton. He was honoured with the Presidency of the General Assembly of Unitarian and Free Christian Churches in 1983, twenty years after his father had held the same post, and in 1995, he was awarded a Doctor of Theology degree by the United Protestant Theological Institute at Kolozsvar (Cluj) in Romania.

His warm relations with the flourishing Unitarian communities of Eastern Europe predated the fall of Communism, and were another manifestation of his outward-looking and tolerant approach: he drove, would you believe, to Romania in his little Vauxhall Chevette in 1979 for a conference and preaching engagement. Lord knows what those surly border guards must have thought of the Englishman in a dog collar driving through the then very real Iron Curtain.

Arthur loved writing and public speaking. In this respect I have followed in his footsteps. He was a prolific writer of sermons and articles, whose style always mixed scholarly erudition with down-to-earth wit. He was founding Editor of the Unitarian Christian Herald and a regular contributor to The Inquirer and Faith and Freedom. He continued to preach well into his eighties, and conducted services until shortly before his death. As late as 2004, he appeared twice in ITV’s now sadly defunct “My Favourite Hymns”, and took great delight in the venue for filming being the magnificent St Walburga’s Roman Catholic Church in Preston.

But what was he like as a private person, as a family man? Well, as I said earlier, really no different! He was absolutely dedicated to his family, and doted on his wife, our mother Margaret, whom he met when she acted as temporary organist at Stamford Street Chapel, where he was Minister. The story goes that she reluctantly agreed to stand in for her then boyfriend, who was organist there, when he went on holiday. The said boyfriend must have regretted that request!

Arthur was a real softie, a true romantic - a quality I have singularly failed to inherit! He would write acrostic love poems to his wife for every wedding anniversary and birthday. Margaret was rather more cynical and hard-headed, and I never saw any reciprocal poetry! He illustrated Christmas cakes with poetry and words from Scripture written in icing, and his tastes in music, theatre and literature were as catholic as his theology. Indeed, I always feel he was somewhat constrained by his wife’s refined and narrow tastes in the arts, especially music. She abhorred popular music in any form, which must have been difficult as that art form blossomed in the swinging sixties. He secretly rather liked it, and I remember her horror when he preached a sermon extolling the lyrics and music of Elvis Presley’s The Wonder of You when it topped the singles chart in 1970. I remember him furtively asking me and Chris to take a recording of it off the radio onto the reel-to-reel tape recorder that he had bought for use in church.

So perhaps it is fitting that I conclude with some words not from the Scriptures, not from one of Shakespeare’s sonnets, but from David Gates, of the 70s soft-rock band Bread. His song Everything I Own is a lament for his father, who died young, but it has always spoken to me about Arthur’s paternal love which was so closely aligned to his love and concern for those to whom he ministered:

You taught me how to love
What it's of, what it's of
You never said too much
But still you showed the way
And I knew from watching you.

God bless him.

Saturday, 29 February 2020

Join Together: Why GBDoc is alive and well....and matters

This coming week, Saturday, March 7th to be precise, marks the 5th anniversary of the first significant #GBDoc social gathering of people with diabetes, held at the old headquarters of Boots the Chemist in Nottingham. The second one happened a year later, on Saturday February 27th 2016.

The Group photo from Day Two of #PWDC16
Organised by the then lead organiser of GBDoc, (the online community of people living with diabetes in the UK) this so-called “Un-Conference” was truly an iconic event for many people, myself included.

A session at #PWDC16 on diabetes and sport, led by Paul Swann
The 5th anniversary brings into sharp focus how much has changed over those five years. With so many of the current users of GBDoc being much newer to the group, and the majority of those who pioneered it back in the early days now seldom taking an active part, it is now harder to characterise such a large and diverse group of people as a “community”. The idea of gathering them all in one place for a meet-up is now fanciful, yet the demand for TAD tickets proves that there is a real appetite among people with diabetes to meet each other. 

Add to that the inevitable fragmentation that occurs in any group as it expands, the differences of motivation, the clashes of style and personality, and it is no surprise that some now consider the idea of an online-based community to have outlived its usefulness. This is, I think, mistaken, very unfair on those who are trying to keep its sense of entity (especially Paul Sandells and Julie Barcroft and their team who work so hard to promote and organise the weekly tweetchats), and very unfortunate for those who have yet to be diagnosed with diabetes, or to discover the benefits of associating with others living with the condition. More of that later.

First of all, a little history, which may be of interest to those who have discovered the hashtag #GBDoc or the tweetchats more recently:

Diabetes communities, and online diabetes chat are older than many might think: Local support groups have been around for years, and people with diabetes, and parents of children with diabetes, had been talking to each other online, sharing experiences and providing mutual support since the early days of social media. Closed Facebook groups existed, and forums (remember the term chatroom???) gave people a chance to ask and answer questions. 

However, GBDoc as a named and identifiable community was formed in 2012 by a gentleman diagnosed with Type One in middle age who was an enthusiast of social media and was seeking ideas and support for living well with diabetes. He chose Twitter because of its open access and simplicity and launched a weekly tweetchat on Wednesdays at 9pm, which quickly grew in popularity as more and more discovered it. It had a website, and its own Twitter account, which is still there, but dormant - @theGBDOC, and this community grew rapidly and was soon imitated in other countries. 

The gentleman concerned conducted the chats himself, became known to many and organised the two meet-ups, but unfortunately conflict and controversy arose between him and some members of the community over time. Without ever announcing it, he stepped aside from the de facto leadership of the community in July 2017 and has remained absent from social media ever since.

Nevertheless, the two real-life meet-ups that he organised, in March 2015 and February 2016, were outstandingly successful and life-changing for many - including me. I am far from alone in having made some very close and enduring friendships from those two events and the sense of togetherness from being in a room full of fellow diabetics for the first time was remarkable and unprecedented. 

Five years on, we should not just dismiss the old GBDoc like an ill-advised dalliance. It was wonderful for a while and many of us owe something of a “thank you” to the founder of GBDoc for the fact that we know each other.

The #GBDoc label was “rescued” in July 2017 by a small group of people who had been alerted to discontent and misgivings surrounding the founder. These people were trying to save the idea of an identifiable community yet without running it, and as the individual who offered publicly to reveal plans to save the tweetchat and the hashtag, I and the others were accused of trying to “take over”. It was a very uncomfortable time, and I was grateful for the many words of support that eventually came from well-wishers, especially when others involved revealed who they were. We set up the @GBDoctchost account as a result, and it is still used to this day.

So how is #GBDoc now? Why is it that many people - myself included - have drifted away from the tweetchats over time?

Well firstly and most simply, it’s that people move on. Stuff happens: relationships, babies, jobs - life! Moreover, many of us who live with diabetes spend more than enough time thinking about it without wanting to add a sometimes contrived and at times repetitive conversation at an artificially chosen time and place. I myself am often otherwise occupied on a Wednesday evening.

However, we MUST remember that this feeling is a product of time, and that there will always be people new to diabetes who might relish the chance to “chat” with others in a safe, supportive and accessible place, with no need to ask to “join” a group. So we mustn’t knock it just because we don’t have time or have become become bored with it.

Secondly and more contentiously, I think that some conflict and discontent is inevitable over time, often stemming from that most basic and universal of human instincts: jealousy. People don’t like leaders and some resent those who style themselves as advocates. They build them up, then knock them down. Yet a “community” cannot exist without a measure of leadership. A tweetchat needs an organiser, and just because somebody organises doesn’t necessarily mean that he or she is “taking over”. Unfortunately, that is how it is perceived.

Thirdly, there’s the question of sheer size. For my own part, I always start to feel ill at ease in any group that becomes too large and/or too noisy. So I find myself estranged from the idea of a “community”. I don’t actually like the word, because I resist being categorised and labelled. This is why what was rescued in July 2017 was just a hashtag, and it is when people start to regard it as something more than a hashtag that problems start. If an individual or group of individuals become too associated with a community, it assumes too much of their identity, and accusations of cliques inevitably follow. Twitter often looks like a clique, given the way that it can quickly become a private conversation between a few conducted in a public place. It often feels like you’re in a room on your own watching a group of others having fun and laughing loudly. Not their fault but that’s the way it can appear.

A growing community also inevitably becomes fragmented, and dominated by those who say most. Individual differences are inevitable, so it behoves everyone to ensure that they don't regard themselves as guardians of the truth or the “right” way to do anything. Unfortunately, Twitter gives a perfect platform for people to “speak” without thinking. Things that in the past would have been just a matter of self-contained annoyance or private amusement become a public proclamation, with an air of authority and permanence that comes from the strange hybrid of communication that it is - writing as if speaking.

What have I learned from GBDoc? Above all, I have been strongly reminded about difference. Same condition, 100s of ways of handling it:

There will be some who want to hang out with others on social media, but 1000s more who don’t.

There will be some who want to meet up socially with others living with diabetes, but 1000s more who don’t.

There will be some who welcome in the community all types of diabetes, some who don't. 

There will be some who want to be all “woe is me” about the burden of life with diabetes, and others who want to be all “no big deal” about it. 

There will be some who want to be humorous and witty about it, and others will not find it funny. 

There will be some who care passionately about language and terminology, and some who don't give a hoot. 

There will be some who want to embrace technology and push the boundaries of innovation, and others who want to keep it simple.

There will be some who welcome the presence of HCPs in the community, and some who want it as a safe place for patients only. 

I could go on.

I guess the thing about a diabetes community is that the very randomness of the condition means that as a group it is more diverse than other groups to which we might be attracted. Groups consisting of people with a common interest, hobby or profession will inevitably attract a certain “type”, whereas there is nothing that unifies those with diabetes except diabetes.

And as I am fond of saying, this is a major strength, but strengths are very often also weaknesses. A diverse community with 1000s of personalities, tastes, experiences and opinions is unusual and precious, yet also a potential tinderbox for conflict.

For that very reason, I shall continue to cherish #GBDoc, but avoid over-involvement in every discussion, avoid the temptation to opine about everything, and hope that others will do likewise.

Oh, and in keeping with my tradition (which some probably find really annoying) I need a song title for this post. How about Join Together, one of the Who’s later and lesser known songs, from 1972? Some pertinent words in there:

Do you really think I care
What you eat or what you wear?
Won't you join together with the band
There's a million ways to laugh
Ev'ry one's a path
Come on and join together with the band

You don't have to play
You can follow or lead the way
Oh won't you join together with the band
We don't know where we're going
But the season's right for knowing
Oh won't you join together with the band

It's the singer not the song
That makes the music move along
Oh won't you join together with the band
This is the biggest band you'll find
It's as deep as it is wide
Come on and join together with the band

A collage of Day One at #PWDC16 - courtesy of Nichola Davis

Friday, 24 January 2020

Miss you like Crazy: Come back Libre!

Some say “familiarity breeds contempt” whilst others say “absence makes the heart grow fonder”: most proverbs have a converse version, and we all choose the one that best suits our argument or the moment.

This isn’t, however, a post about relationships.

It’s about diabetes technology, specifically the problem that has compelled me and many others like me to live without our life-changing FreeStyleLibre blood glucose monitors in recent days, because of supply chain problems in NHS prescription supplies to pharmacies here in the UK. I am missing my Libre sensors, and their absence has certainly made my heart grow fonder for them.

What’s the problem? Well, if you live with diabetes and use social media, you’ll know that since Christmas there’s been a significant problem with the supply of sensors, the prescribed and disposable element of a system which has in recent years revolutionised the way in which people with Type 1 Diabetes monitor the all-important levels of sugar in their blood. 

Much has been written about this device, and a campaign in the past two years led by an alliance of patients, doctors and diabetes charities succeeded in making it available to eligible patients on the NHS; many had previously been funding their own sensors at a cost of approximately £100 per month.

In case you don’t know, FreeStyle Libre is a device which enables us to see at a glance the level of glucose in our blood, thanks to a tiny filament which sits under the skin, constantly measuring interstitial fluid, which reflects closely the level of glucose in the blood. The two main advantages are that the device involves no invasive pricking of the fingers to draw blood, and perhaps most significantly, that it enables the user to see a “trend arrow” indicating whether the level of glucose is rising or falling. This is essential and potentially life-saving information.

Like many people living with Type 1 Diabetes, I had quickly become used to this device, having self-funded for 4 years then secured eligibility for prescription in April of last year. I wrote about it more than once on my blog, and played a small part in the campaign to get NHS approval for prescription of sensors, extolling its virtues on TV, radio, in parliament and to local healthcare providers. I was determined to do my bit to ensure that access to this in many ways quite simple piece of technology was available to the widest number of possible beneficiaries, and the progress made over 2019 was remarkable, thanks in particular to the efforts of Partha Kar as a professional and Nick Cahm as a tenacious amateur

So by the end of 2019, all seemed well, and many of us had become used to collecting our little yellow boxes of sensors from the pharmacy, along with our needles, insulin and other diabetes supplies.

Then suddenly, it all went wrong! Soon after Christmas, reports of severe delays and then non-availability came flooding in on social media, and I am fairly typical of the current situation as of Jan 24th 2020: I ordered new sensors (we are allowed two at a time, one month’s supply) on January 5th, and I’m still waiting, after 3 weeks.

Now in the grand scheme of things, it’s no hardship, and certainly not worth some of the anger and vitriol that has been apparent on social media. But then again, people feel the need to spill anger and vitriol about lots of things these days.

Of course it’s no big deal, and certainly not a matter of life and death. Before I or anyone else starts feeling too sorry for themselves, we should all take a moment to reflect on the good fortune that we enjoy in living under the care of the NHS, as opposed to in the USA, where even insulin costs are obscenely high, or in some countries where insulin is unavailable for some. A good moment to plug the charity Life For a Child and their "Spare a Rose" campaign - please donate if you can.

However, having said that, going without a luxury makes one very aware of how quickly a luxury becomes a necessity. Have you tried being without a mobile phone for a day or two? Or having to hand wash the dishes when your dishwasher breaks down? Or you clothes when the washing machine packs up?

FreeStyle Libre is much the same: my few days without a working sensor have reminded me that merely knowing the level of my blood sugar is a very inadequate substitute for knowing its direction of travel. And that trying to do a finger prick test at 2am when half asleep is difficult. Or that doing a finger prick test at any time is painful, messy and inconvenient.

But above all, that testing only a handful of times daily is hopelessly inadequate. The NHS criteria state that Libre should be available for anyone "needing" to test more than 8 times daily. 8 now seems totally inadequate, and I have badly missed the ability casually to check at any moment of the day or night. I fail to see how anyone with T1D can feel really confident if their last test was several hours ago.

And yet for 18 years, that was how I lived, and not that many years previously - as Peter Davies has so effectively reminded us - all you had was a urine test strip which told you *roughly* what your BG was several hours ago.

So my time without Libre has served to renew my conviction that where Type 1 Diabetes is concerned, the ability easily to know what’s going on with one’s blood sugar, and to learn from and react effectively and flexibly to that information, is the key to living well. I hope that once the current supply issues are ironed out, we will soon see Libre (or other similar low-cost monitoring systems) available to many more who would benefit. And surely that means the overwhelming majority of people with Type 1, and for that matter Type 2.

Meanwhile, dear Libre, I Miss you like Crazy.

"He ain't heavy, he's my brother" - who cares for the carers?

Photo Collage by my friend Lis Warren It is self-evident to say that we are living through strange and troubling times: you need to be over ...