Monday, 31 July 2017

Couldn't Get it Right

This is difficult. I am well aware that every job is a good deal harder and more complex than it looks, and that it is the easiest thing in the world to criticise, so I offer these thoughts as, I hope, due praise, together with suggestions and observations as to how things could perhaps be differently expressed. 

A routine hospital clinic review has left me with a 1976 earworm from my diabetes playlist which expresses perfectly my thoughts: Couldn't Get it Right by the Climax Blues Band.

Today was my second clinic review since I returned to hospital care last year. My first review, back in November, left a lot to be desired, and I wrote about it at the time – here.

Today's visit went better in many respects. For a start, the administration was exemplary and the waiting time minimal. I received a courteous reminder phone call, at 7:30pm, three days before the appointment, with the caller apologetic for disturbing me but explaining that missed appointments are common and costly. Fair enough.

Checking in at the hospital was on a touchscreen and I had been sitting less than a minute when I was called for weighing, blood test, blood pressure and “taking the piss”. Another minute's sitting down and I was called in, about a minute before the appointment time.

At my clinic we do not have designated consultants and DSNs, so it appears to be pot luck whom we get to see. The woman I saw greeted me, gave her name and proceeded to give me more time and attention than I have ever had before. She was thorough and attentive, and my take-home message in factual terms was an HbA1c of 6.4. So I should be celebrating.

But I was left feeling, well, mildly amused and even slightly angry, largely because of some rather careless language and an unnecessarily stern tone on the part of the consultant.

She asked to see my meter in a rather brusque tone, and seemed surprised and mildly disapproving when I proffered my FreeStyle Libre, explaining that this was where the vast majority of my data could be found. She took it from me in a manner reminiscent of a teacher confiscating a mobile, then fumbled through the display in a manner reminiscent of an aged aunt with a smartphone. She was clearly less than familiar with a device which has in recent years been widely recognised as a quantum leap in blood glucose monitoring, an impression strengthened by her asking how long I wear the sensor for (it is well known that the sensors last precisely 14 days). I sensed suspicion rather than interest.

She was commendably thorough in her questioning, albeit a little bureaucratic and interrogatory in manner. I was particularly amused by one choice of question: “What other medical conditions do you have?” “None!” Her raised eyebrow suggested disbelief, and surely a better phrasing would be “Do you have any other conditions?” Words are powerful and subtle things, and the phrasing of a question should be thought through. Especially if it's a routine question, presumably used at every such appointment. I felt guilty for being so well.

Scrolling through my data, she appeared to be looking for lows, and enquired rather accusingly “what was wrong here?” on seeing a solitary “LO”. I explained that nothing was wrong, pointing out that it was at 5:30 pm on a day when I had been working hard in the garden, that it was preceded (on the Libre) by a 4.9 with a down arrow and followed, 30 minutes later, by an 8.4 with an up arrow, indicating that I had anticipated and acted upon the “LO”. Her manner suggested she was unconvinced.

Then came the punchline: my HbA1c, she said, was “too good” at 46 (6.4). It was at a level where I was at increased risk of hypos (self-evident in a way?), and she asked if I suffered from hypos. Yes, I do, I replied, but I am normally able to anticipate them and deal with them, not least because of the Libre. Fair enough, she said, but if it went any lower "we would need to lower your insulin dose”. Bad phrasing again. I'm not a child – it is I who would modify the dose.

By this point, I was starting to sense some rather rigid thinking: “lowering my dose” suggests a constant dose, unadjusted for meal content, portion size, activity level, temperature etc. I vary it according to what I'm eating and doing. I don't have a "dose". It's not medication.

To finish with, she said she thought I didn't need a DAFNE course. I was clearly doing very well without one. I told her that I've never been taught carb counting, I just guesstimate, and she replied that I must be very good at it. So again, I am being penalised for doing too well.

So there you go. A pleasing HbA1c result, great to hear as I approach my 20th diaversary and 60th birthday, but somehow it seems that they're never satisfied. 

To paraphrase Abba, “I feel like I lose when I win”

Saturday, 15 July 2017

Everything I own: a tribute to my father

This is the text of a tribute that I delivered on Saturday July 15th 2017 at a gathering of the Unitarian Christian Association, held at Luther King House in Manchester.

My father was a prime mover in the establishment of Luther King House as an inter-denominational federation for the training of clergy, and was Principal of Unitarian College Manchester between 1974 and 1989, during which time he oversaw its absorption into the federation at Luther King House. He was also a founder and prime mover in the establishment of the Unitarian Christian Association.

My brief was to speak of the private man, the father. Here is what I said, and being me it featured two song titles, one of which makes a perfect title to this post. As is my custom, click on those words in the text and you'll hear it.

My father, Arthur Long (1920-2006)


Arthur Long: Minister, Scholar, Raconteur, Father

We are here today to celebrate the life and work of my father, the Rev Dr Arthur Long, who died at the age of 86 on December 9th 2006. He was, of course, 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 our dad. To my wife Sue and Chris’s wife Michelle, he was a caring father-in-law Arthur and to his four grandchildren, he was just Grandpa. I am here to give a bit of insight into the man, not the minister.

But what strikes me, having been given the opportunity eleven years on from his death to think about him, is that unlike many people with a public persona,  the public and the private man were no different.

Born in 1920, Arthur was one of four children of the Rev. 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.

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 UCA is very much part of his legacy.

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 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 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 enacted 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 freedom of the General Assembly Certificate and his doctorate certificate are among the items that I have brought along today.

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 person? 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.

And when you smile the world is brighter
You touch my hand and I'm a king
Your kiss to me is worth a fortune
Your love for me is everything

I'll guess I'll never know the reason why
You love me as you do
That's the wonder
The wonder of you

Romantic or what?

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.





Tuesday, 11 July 2017

GBDOC

In the past couple of days it has become clear that there are significant and serious concerns about the GBDOC, relating to questions about the financial and business affairs of the founder of the formalised community. This comes on top of unease about the crowdfunding appeal for the third PWD conference in August and unhappiness with some comments used by him on social media.

The gentleman concerned still has the opportunity to respond if he wishes to do so, and if he does, we should all look at what he says with an open mind. I am not alone in knowing little of the detail surrounding this situation, but it is clear that a large number of users of the online community have lost faith in its founder and de facto leader, and he has as yet failed to respond to concerns widely raised.

I write as a very committed participant in the community over the past four years or so, but I am well aware of others whose use of social media for peer support long predates mine, and indeed the existence of the GBDOC. I have no authority other than relative seniority of age and length of association, but I have been party to, indeed have instituted, much discussion on Twitter over the past 24 hours about the future of GBDOC.

I have been encouraged but not at all surprised by the depth of feeling and good sense that has been so apparent. It is clear that I am far from alone in my love for the community, and I am keen to play my part.

May I above all suggest that we be very wary of quick decisions and hasty judgements?

The community clearly has a life of its own regardless of any “owner” or social media account and of course hashtags belong to everyone and no one. As such the online community will flourish and prosper, but like any community it needs some sense of direction and a degree of centralisation or else it will fragment.

I hope that we can allow the tweetchats to happen more or less normally for the next two weeks. I understand that Ros (@Type1Adventures) and Bri (@type1Bri) had agreed to host the next two weeks and that should go ahead as planned. Ros and Bri are active, supportive stalwarts of the GBDOC who have both done great things for pwd in their local areas as well as online. I cannot think of better hosts.

They have both said that they will host under their own accounts using the #GBDOC hashtag, and having acknowledged the issues at the start of the hour, I think we should all chat as normal, if interested in the topics.

We could then, perhaps, have a separate chat about what to do next. The hashtag has been much discussed already, as has the idea of shared/rolling hosting, charity involvement etc. A poll might be worthwhile, but surely not until we've all had time to think.

The GBDOC is very precious to me, as I have said many times. It need not be complicated, controversial or divisive. It has flourished (unlike, for example, its French counterpart) because a lot of us talked about stuff other than diabetes and as a result became above all a group of friends. I have made some wonderful friends through this community – we just happen to have a medical condition in common. I hope it will stay that way.

Thank you all for your thoughts on this matter; please respond with your honest and considered thoughts if you wish to do so, but take your time.


Adrian Long 

Monday, 10 July 2017

Standing on the Inside: my day in the Land of Libs

I have often over these past 3 years reflected on the interesting turn that my life has taken thanks to diabetes. Never more so than last Friday, when I found myself Standing on the Inside of the factory where the FreeStyle Libre is made. Yes, I was in the #LandOfLibs and Neil Sedaka's jaunty tune from 1973 came into my head.

Until around 2014, my adult life had unfolded along a line which was really rather predictable. I had enjoyed school as a pupil; my mother was a teacher; and I was good at languages. I had an inspirational and personable French teacher for a couple of years leading up to O-Level, and he seemed to me to thoroughly enjoy what he did for a living and imparted that sense of fun to others. So I never really considered doing anything other than being a teacher. I went to university to read languages then trained to be a teacher.

Moreover, given that I am not very adventurous, it was always likely that I would end up living not far from where I was born and brought up, and so it was hardly surprising that I took a job teaching languages in a Lancashire school in 1981, made a reasonable success of it, and worked an entire career there. I married quite young, with my wife also pursuing a career in teaching, and along the way we raised a family of three children, all now adults.

So far, so predictable. We’ve had our share of life’s ups and downs, as any family does, but far more of the former than the latter. For me, the biggest down was developing Type One diabetes in 1997, exactly halfway through that teaching career, but to be honest it had little impact on my life and work, being just a nuisance rather than a burden.

It is therefore remarkable that I now devote so much of my time, thoughts and energy to diabetes and my fellow diabetics, and I have spent much time reflecting on this, not least this past Friday, when I found myself as a VIP guest at the Abbott Diabetes Care factory in Witney, Oxfordshire, sharing a public conversation with a Sky TV presenter about my life with diabetes in front of an audience of people who work at that factory. Yes, I really was in the #LandOfLibs. How did this happen? 

Well, it started with a tweet – like a few interesting opportunities in my life of late. It was June 2015 and I received this message from a then unknown follower on Twitter:-


That message, from an Abbott tweep led to my being the subject of a filmed mini-feature about my life and work and how the FreeStyle Libre had helped me to flourish. If you haven’t seen it, it’s here:


Both before and since the making of that film, I have continued to extol the virtues of the Libre, entirely out of conviction and with no inducement or encouragement from its makers. I say it because I believe it, and I know that many others feel likewise, and many, many more would love to do so if they could afford it. I said it all in this blog post (link below) within a few days of getting it and have never changed that view:-


As well as that film, Abbott have already involved me and other fellow diabetics in a number of other activities, most memorably and enjoyably at two bloggers’ conferences in different European capitals. Having twice boarded aircraft at the crack of dawn, bound for cool European cities in the company of friends who were until recently complete strangers, I have already had cause to be very grateful to Abbott for  giving me some new opportunities as I approach retirement from my working life. My sincere enthusiasm for an innovative piece of medical kit has certainly taken me to some interesting places and made me some wonderful new friends.

So imagine my delight when I was asked a few weeks ago if I would like to give a presentation to the workforce at the factory where FreeStyle Libre was invented, developed and is produced. I leapt at the chance, unsure of what was required of me, and discovered that I was to share duties with Stephen Dixon, presenter of Sunrise, the breakfast news on Sky TV. Stephen is a high-profile Type One whom I had already met when we were both speaking at the TADtalk conference in April, and we were asked to conduct an on-stage conversation about life with Type One and the benefits of the FreeStyle Libre in allowing us to live our busy lives.

So I found myself in the Land of Libs on a glorious summer’s day, and a surprisingly powerful experience it proved to be. I remain rather humbled, even baffled, but extremely grateful for the recognition and respect that I am afforded by Abbott, and I felt rather unworthy as I was welcomed as a VIP visitor and taken on a factory tour. 

#LibsOnTour at the #LandOfLibs


Abbott's Witney factory is most impressive: a modern, squeaky-clean place where test and ketone strips for ordinary meters and sensors for the FreeStyle Libre are made. Sadly, but understandably, the Libre sensors are produced in strict secrecy, due to the potential value of such a unique and innovative product to rival companies. Frosted glass screens the production lines, with workers in the sterile rooms dressed like forensic scientists at a crime scene. The regulatory demands of producing a medical device which penetrates the skin are reassuringly strict.

I got a better look at the process which produces blood and ketone test strips in their millions, and it gives a powerful reminder of the awesome technology from which we benefit. 

Equally striking is the positive corporate culture which pervades every aspect of the factory's life and work. The sense of teamwork and inclusiveness is palpable, and the highly skilled workforce clearly enjoy their work and take great pride in it. The corridors feature displays which celebrate the company's mission and ethos in a manner reminiscent of a good school, indeed the uniformed workforce clearly have the same sense of belonging as that found in any good school.

My staged conversation with Stephen Dixon, at which we “compared notes” on our lives with diabetes, was listened to with a respectful attentiveness which confirmed that employees really appreciated the chance to hear at first hand how their work impacts upon the lives of those whom Abbott's products help. I genuinely felt that I was part of something big and thoroughly worthwhile.

I hope that this does not come across as obsequious or creepy. There are those, including some in the world of diabetes, who are cynical and suspicious of the role of the healthcare industry in caring for peoples' health. Some suggest that profit is their driving motive, but I beg to differ. Businesses, all businesses, produce goods and services from which we all benefit. They make profits if they do it well, and invest those profits to improve and extend what they do, as well as rewarding those who help make them successful. Capitalism, like any system, has its faults and can be abused (the current scandal of insulin price in the USA springs to mind) but by and large it works to the benefit of society at large as well as any other system we have tried.

Abbott Diabetes Care appears to me to do a very good job in developing and producing ways of improving our lives with this demanding condition. The FreeStyle Libre is a technologically advanced game-changer for those lucky enough to be able to afford it. There is good reason to believe that it will in time be available on prescription and I know that there are people working tirelessly to achieve that goal. Abbott are all about technology and scientific expertise, but more than that they are about people. I have had the pleasure of meeting many people from several countries who work for the company in a variety of roles. They all speak warmly of Abbott and the people who work for it, and I am proud to count a number of them as friends. Abbott and its people mean a lot to me. 

New friends from Abbott


My day in the Land of Libs confirmed what I already thought, and I am grateful for the opportunity to be Standing on the Inside and getting to know more about where the FreeStyle Libre comes from.