I'll be There for You

2017 has certainly been a significant year for me. Full retirement and a house move are pretty big events, so the year hasn’t exactly been quiet. Indeed I feel well and truly shaken out of any sense of drift or complacency, and grateful that I’ve been able to make these significant changes in my life at a time of my choosing, and with enough physical and mental energy to embrace them as new challenges rather than feeling “put out to grass”. I am certainly not daunted by having turned 60 - I have a nice sense of entering a new phase of life.

I never planned it this way, but I have to say that my relatively recent discovery of the online diabetes community has been a tremendous help in enabling me to feel re-invigorated and re-energised at this time of my life. I thought it appropriate to post some thoughts on this informal peer support community to mark a notable milestone in my life with Type One diabetes.

It’s twenty years on December 19th since I was diagnosed with the condition (an incorrect diagnosis of Type Two in the first instance - I've told that story here), shortly after the landmark birthday of 40 years. Of course that has to go down as a big negative in my life: developing an incurable, life-changing and potentially life-threatening medical condition at around the halfway point of a typical lifespan is not what anyone would choose for a happy and contented life.

Yet when I think about what I have done this past year alone, it is hard to avoid thinking that my life might now be rather dull without diabetes. I know that there are people out there who resent positivity about diabetes, so let me apologise to them, acknowledge how lucky I am to be able to live well with the condition, and ask that we accept that everyone has their own way of dealing with what happens to them. My own approach is, and always has been, to look for silver linings. And getting to know so many others who have, or live with people who have, diabetes has certainly been a silver lining for me. Some of the greetings I received from diabuddies via Twitter on my 60th birthday were wonderful, so thank you - you know who you are.

In 2017, diabetes has given me opportunities and experiences which have filled the potential void caused by retirement from a busy people-centred job: speaking engagements at #TADtalk2017, at the FreeStyle Libre factory, at the All-Party Parliamentary Group at Westminster and live on Breakfast TV would all have seemed like bizarre dreams a few years ago. And then there’s the real-world meet-ups: this year alone, I have spent lovely times in groups large or small in Oxford, Manchester, Amsterdam, Witney, Bakewell, London and Birmingham with friends from all over the UK and beyond, who were in all cases complete strangers until very recently. And most days I spend time on Twitter in conversation, sometimes serious, sometimes frivolous, with others all over world whose only connection with me is a shared medical condition. My horizons have expanded immeasurably thanks to an annoying and sometimes dangerous medical condition.

Yet it hasn’t been all sweetness and light. Wherever two or three gather together, they will disagree about something, and the diabetes community is no exception to that. It’s human nature, after all. The online community hasn’t been the happiest of places at times this year, and I have found myself the subject of some hostility, in particular over two issues:

Firstly, it became apparent in July that there was significant controversy and lack of confidence surrounding the so-called GBDOC and its founder and hitherto de facto leader. With trust in the brand and its weekly tweetchats severely eroded, I found myself as one of a well-meaning group of people who attempted to guide the community into a more collective and inclusive ownership, rather than being a mouthpiece for one individual. Although our moves were widely accepted, appreciated and recognised they nevertheless caused a degree of resentment in some quarters and unwarranted accusations of a “takeover”. 

Those who felt so threatened by this appeared not to acknowledge that nothing happens in a group large or small without someone taking the initiative, and that taking the initiative does not necessarily imply power grabbing or ego tripping. I hope that the continued existence of a warmly supportive GBDOC community and of weekly tweetchats under the community account @GBdocTChost led by volunteer hosts serves as powerful reassurance to those who feared a takeover. I would like publicly to thank in particular @Jules1315 @type1bri and  @Type1Adventures for their work in ensuring that this happened and continues to happen. Public-spirited, generous-minded and supportive individuals every one of them.

Then secondly came another source of controversy sparked by the decision in September by the NHS to add FreeStyle Libre sensors to the approved tariff for free availability on prescription. Although this development was the result of many months of hard work by groups and individuals, notably our very own NHS Sugar Doc @parthaskar, I was inevitably associated with the decision given my longstanding public endorsement of the Libre, my consequent attendance at events run by its manufacturers Abbott, my speaking to a parliamentary committee about it and my TV appearance on the day of the announcement. Understandably, I again felt the resentment of those unhappy with the decision, and even found myself and others accused, laughably, of “taking payment in little brown envelopes” from the manufacturers.

With some folks fearing that availability of the Libre on prescription would lead to reduced availability of CGM and other diabetes technology, or criticising the fact that Abbott have a monopoly on flash glucose monitoring, or unhappy that NHS availability was leading to delays in supplies for those still self-funding, and valid concerns arising with the use-by dates on sensors, it seemed for a while as if the funded availability of a new device which had been so very helpful to so many, including me, was the work of the Devil himself. And as so often in life, the quietly contented were drowned out by the noisily disgruntled, which must have been disheartening for those who had worked so hard to make it happen. The Libre, like insulin pumps, like CGM, is not for everyone, but at least we are moving towards a situation whereby it should be available to all, regardless of ability to pay. Had social media been around at the time, I am quite sure that some might have been equally angry about the first insulin pens, pumps and meters. Change of any kind is seldom universally welcomed.

Again, however, as time has passed and things settled down, more positive voices have come to the fore, and we reach the year’s end with the online diabetes community very much alive and well. My hope for 2018 and my next 20 years of living with diabetes is that people will come to accept that differences of opinion, factions and groupings are an inevitable part of any group of people. The wonderful thing about the GBDOC is that the very randomness of diabetes produces an online community which is by definition random (albeit including only those who use social media). So it would be a pretty odd, and frankly dull place if we all agreed about everything.

Other groups of which I am part consist of very differing people, some of whom I like a lot, some of whom I am indifferent to, and some of whom I disagree with. But that doesn’t mean I necessarily want or need to criticise those with whom I don't get on; indeed I have massive respect for those whose opinion differs from mine on all sorts of issues. In the real world, I just sit in a different part of the room from those with whom I differ significantly, and the GBDOC rightly consists of people who sit in different corners of the virtual room. I tend to “sit” with those who actually don't talk about diabetes that much. I just like having friends who “get it”, and I enjoy talking to them about other areas of mutual interest, with the comforting feeling that I am hanging out with folk who have such a big thing in common with me. It is a joy to me to share cat pictures or things like this year's #BaublesOfGBDoc with a group.

But we all use #gbdoc in different ways and rightly so: some talk enthusiastically on social media about pumps, ratios, doses, CGMs, closed loop systems etc, and I admire them for it and enjoy their enthusiasm and expertise.  But it’s not for me. Others use social media as an outlet for their woes and frustrations, and whilst I don't tend to do that, I do try to be a virtual shoulder to cry on and greatly value that opportunity. Some, including me, post images of their triumphs and I for one derive great pleasure from seeing other peoples' success. There's a word for it: confelicity. It saddens me when I read suggestions that to do this is selfish because it causes distress to others: nobody forces anyone to be on social media, and there’s always a mute button if others’ way of saying and doing things causes stress or offence.

When push comes to shove, we are all on the same side and it is a constant pleasure to me to see such a diverse group of people being a real source of company, friendship and support to others. It’s what friends do; as the theme song says I’ll be there for you. And I for one am glad that so many others are there for each other and for me. 

Here's to the next 20 years. 

Follow you, Follow me: role models and ivory towers

It's not been a good week for Oxford University. A damming response to a freedom of information request by Labour MP David Lammy revealed a shocking and growing lack of social and ethnic diversity in their undergraduate intake, suggesting that an institution that has always been seen as a bastion of the privileged establishment is becoming increasingly just that. The university, along with its counterpart Cambridge, and indeed other top universities, appears to be helping those already in the upper echelons of society to tighten their grip on the top jobs, to the exclusion of those less fortunate than themselves. Click here for the story.

Of course this is nothing new. Reports condemning Oxbridge and its self-evident lack of social and ethnic diversity appear with depressing regularity, giving ammunition to those who wish to snipe at these ancient universities, so admired and respected throughout the world, yet so often the subject of criticism or ridicule at home. This saddens me: I am a proud Oxford graduate, yet feel that I earned the right to that status rather than being born to it, and I am also proud that a small number of students whom I taught over a 36 year career followed in my footsteps, not because they were privileged and educated at a good school, but because they were highly intelligent and well-motivated students who were encouraged and, I hope, inspired by a teacher who believed that they would enjoy and benefit from such a uniquely challenging education. More of that later.

Now of course I am biased, so if you think that Oxbridge is a self-serving ivory tower, perpetuating the injustices and inequalities of society, you might as well stop reading here and resent me.

My alma mater: Exeter College Oxford

But if you can bear with me, let me defend my alma mater. (“There he goes, spouting Latin, point proved....”)

I honestly believe that to attack Oxbridge is to miss the point. Oxford and Cambridge are elite universities, now more than ever. They compete at an international level with other leading universities and can only sustain their position and reputation if they recruit the best students from the UK and beyond. And if the best students (albeit judged on narrow academic criteria) come from a very limited sector of society, arguably that's society's fault, not Oxbridge’s. They can only select from those who apply, and it is a self-evident truth that high achievers are more likely to come from well-to-do families, top schools, and very often both.

That doesn't make it right, and it doesn't mean there isn't a problem, which could, to an extent, be tackled - for example by continued investment in imaginative outreach work. However, I feel that to criticise Oxbridge is easy but unfair. They are academically highly selective, and there are far more applicants than places. So they choose the best applicants, wherever they come from. But in my view, they do so without prejudice or favouritism: they pick the best, who all-too-often are not from lower socio-economic groups or ethnic minorities. Therein lies the real problem, and we shouldn't blame Oxbridge for that.

My feeling - and it's no more than a feeling, so I will willingly stand corrected if others want to counter with hard facts – is that Oxford has become far more socially exclusive than it was in the 1970s when I was there. I was at Exeter College, one of the university's oldest, a college which visually fulfils every cliché: the honey coloured walls, the manicured quadrangle, the ornate chapel, the hogwartsesque dining hall. Yet in the 70s it was a pretty down-to-earth place, and for this lad from “oop North” it was challenging, mind-broadening but not intimidating. My friends and fellow undergraduates there spoke with accents from places like Bradford, Manchester, Oldham, Devon, Wiltshire, London, and Wolverhampton and were mainly state educated. Posh public schoolboys were there, but seemed like an endangered species, a harmless source of amusement to those of us who were of the real world.

So if I am right, why has this happened over the past forty years? Why has Oxford become more socially exclusive over a period in which, to some extent at least, society at large has quite rightly become more meritocratic and egalitarian and less deferential to the old school tie?

I fear that the answer lies much further back in the educational system. Oxbridge is not recruiting young people from less privileged backgrounds because those young people are left behind way before they get near applying to university. The fault lies in a system which does not support and inspire young people from all backgrounds to aim high and reach for the glittering prizes. The quest to raise standards for the many over recent decades has arguably meant that the interests of the most talented get neglected. For all their faults, the free state grammar schools which flourished in the mid twentieth century, not least in the industrial North, gave some children from all backgrounds a ladder and the encouragement to climb it.

No, I am not calling for a return to grammar schools. They had many faults, serving only a relative few based on a harsh and imperfect selection method and left many on the scrapheap. However, one of the great features of the grammar school that I and many others attended was the influence of the many talented, charismatic and inspirational teachers who served as role models for the likes of me. And guess what, many of them were Oxbridge educated: I recently came across a staff list from the early seventies from my old school, and was struck by how many of my teachers were Oxbridge graduates. Highly intelligent yet grounded men, who taught entertainingly and intuitively, each in his own style, free from the need to follow detailed schemes of work, to meet aims and objectives and to meet performance criteria. The best lessons were the ones that digressed wildly from the matter in hand, stretching the mind and arousing true intellectual curiosity. I applied to Oxford for a lot of reasons, but strongest among them was that I had a really good and inspirational French teacher at my (free, state) grammar school who was an Oxford graduate. He was clearly very clever, but also very funny, and he used to regale us with stories of his university days. I wanted to be like him, and was lucky enough to be able to fulfil that ambition. I know several of my friends from those days who applied to university for the same sort of reason. 

I fear that such people do not come into teaching these days, and if they do their talent is subjugated to the need to tick boxes in pursuit of Ofsted criteria. Why would an Oxbridge graduate come into teaching, where pay is capped, professional freedom and common sense is constantly undermined by policy and bureaucracy, when they could earn far more for less intellectual effort in another profession?

Perhaps instead of demanding that Oxbridge fiddle with their selection procedures and entry requirements, we should look at ways of encouraging more Oxbridge and other high-calibre graduates into teaching, where perhaps they can demystify Oxbridge life and act as mentors and role models. And when they become teachers, perhaps we could allow them rather more freedom and respect. If we must have academies, how about an Oxbridge sponsored academy?

Follow You, Follow Me, as Genesis said in 1978. Role models can be very powerful. 

Birmingham Blues

Saturday’s DX2Birmingham event was an excellent opportunity to meet with other Type One bloggers, all of them already known to me as it happens, and to share some ideas and experiences, and most importantly, a chance to meet with Abbott leadership and hear more about the complex and ongoing process of widening access to the FreeStyleLibre in the UK.

I thoroughly enjoyed the day, but because there aren't many songs about Brum, ELO's Birmingham Blues will have to serve as my song-based title for this post.

The first part of the day was an enjoyable and interesting chance to discuss some ideas around supporting our lives with diabetes and helping others to do so.

After an icebreaker involving "speed dating" - but with people who were mainly already good friends - we had a session with some good tips and ideas from PR experts about how better to promote and spread our online writings which I hope to explore further in the future as and when time allows.

We had a good session working in small groups on ideas for spreading the word and supporting others through blogs, tweetchats etc. Given the recent turbulence surrounding GBDOC and the successful transition to shared hosting of the weekly tweetchat, it was interesting to share ideas on how that might be sustained and developed. It was most interesting to hear that a social media expert comment was well aware of the GBDOC and its recent difficulties, but also to hear him praise its continued existence under new collective management. It clearly stands as a fine example of peer support. I was sad that more of those who had been directly involved in keeping the tweetchat going weren’t there, and I share the view that attendance at an event like this could be more widely and transparently available. In the meantime I hope that my presence, and that of others, and our reporting back, are of some benefit:

A small group of which I was part discussed the idea of perhaps drawing in more guest hosts from outside the regular community, such as charities and special interest groups. This has already been done, of course, on the Access to Insulin issue, but other topics, notably the very topical diabulimia issue, might well be good material for involvement of people with specialist knowledge, either as hosts or joint hosts. Another idea was to have chats specifically for those associated with people with diabetes, most obviously friends, partners and parents. This was a successful element of the two PWDC conferences in 2015 and 2016 and would be very beneficial to those groups, especially if the actual #pwd agreed to stay away or just “lurk and learn” rather than take part.

Lis, Pippa and Tim - diabetes bloggers all

We also felt that there were significant issues for parents of children with diabetes who have used social media to support caring for their children through infancy, childhood and adolescence, and then face their own “transition”, as their children start to self-manage. Tweetchats just for parents might be useful in this respect.

The afternoon was largely taken with feedback and discussions about the FreeStyleLibre and its availability through the NHS. It is abundantly clear that those who work for Abbott are proud of their company in general and this product in particular, and are keen to hear from those who use and benefit from it.

A good summary of the discussion has already been posted by my good friend and fellow blogger Melanie Stephenson here:-

http://www.lifesportdiabetes.co.uk/2017/10/dx-birmingham-2017.html

I will not replicate her good work other than to say that it is reassuring to know how much goes on behind the scenes involving Abbott themselves, diabetes charities, healthcare professionals, NHS administrators, and yes, volunteer people such as ourselves, to try to ensure the best outcome for the maximum number of people. 

Concerns regarding issues such as CCG policies, continued access to test strips as well as Libre sensors, unacceptably short use-by dates and replacement of faulty sensors were all aired and concerns noted. We shall see what happens.

Neil Harris of Abbott talking about developments with the FreeStyleLibre

The issue of acceptability of FreeStyleLibre and CGM as proof of fitness to drive is very much alive, and in all modesty I would say that I have been pleased to hear that both Abbott and Diabetes UK are using a simple case study that I did regarding use of FreeStyleLibre before driving as a significant part of their evidence to the DVLA. I may be criticised for my association with a healthcare company, but how else could I have made my voice heard, and by extension that of many others, on this matter?

The online diabetic community has not been the happiest of places to be at times this year, and as inevitably happens wherever two or three are gathered together for any length of time, differences and disagreements emerge.

There has always been a degree of suspicion about the way in which the healthcare industry develops relationships with those who use its products, and those who choose to respond to invitations from the likes of Abbott will inevitably look as if they are “in the pay” of a particular company, incurring at best the suspicion and at worst the resentment and hostility of those who prefer to remain independent. I was among those who felt the heat of such criticism before this event in Birmingham.

I would say two things:

Firstly, I have never actively sought invitations from Abbott or any other company. It was the other way round: I was an enthusiastic early user of FreeStyleLibre and as a result of publically expressing that enthusiasm, I was approached by Abbott.

Secondly, I have never been even asked, let alone pressurised, to say good things about Abbott or the FreeStyleLibre online or in print. I have said good things because my own experience makes me want to do so. I felt very strongly from the outset that the FreeStyleLibre was a life-changing support to me in managing my condition, and that it had the potential to do so for many others like me. Living in an area where diabetes care is very technophobic, and having only learned of the existence of FreeStyleLibre via social media, I wanted to spread the good word and perhaps help to ensure that it became a choice for more than just those with the ability to pay. That decision that I made over two years ago has led to some wonderful opportunities and connections which I have valued and appreciated, and I believe that in a very small way I have helped to spread the good word to those for whom it might be beneficial.

I have been critical when necessary, but as is my wont in all areas of my life, I work on the principle that if I have praise, I give it publically, but if I have criticism, I prefer if possible to do so in a more restrained, constructive and discreet manner. I post good reviews on things like Trip Adviser, but if I didn’t enjoy a place, I just say nothing, unless a restaurant, hotel or company gets something seriously wrong. In such cases, I tell them so directly, and if they fail to acknowledge or respond I reserve the right to make a public fuss.

I am under no illusions as to my own influence and importance in the area of diabetes care; they are minimal, but if a healthcare company chooses to involve me in their work, I am happy to help.

Disclaimer: I was invited to DX2Birmingham by Abbott Healthcare, who paid for all travel expenses for me and other delegates. Opinions on the FreeStyleLibre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.

Post-Script:

Our day concluded with some of us staying for (self-funded!!) drinks at the wonderfully entertaining Aluna Cocktail Bar then a small group of us shared a (self-funded!!) evening meal at Café Rouge. I make no apologies whatsoever for enjoying the company and mutual support of some very dear friends with whom I have little in common except a medical condition. I only wish that more of them had been there. 

And no, we didn’t just talk about diabetes!

 

Fun and fellowship with diabuddies Ellie, Lydia, Lis and Nick

Flashdance - What a Feeling

Here is the text of an address I delivered to @APPG_Diabetes the all-party parliamentary committee for diabetes. I was asked to deliver this speech by Diabetes UK and Abbott, to help spread awareness of the benefits of the FreeStyleLibre Flash glucose monitoring device.

By a nice coincidence the following day saw the long-awaited announcement of the FreeStyleLibre being aproved for NHS funding. My address will, I hope, help to show those who are unfamiliar with this device how beneficial it can be.

My readers will know that I give all my posts a song title - so this one chose itself. Irene Cara's classic 80s feelgood song: FlashDance - What a Feeling!

"Developing Type 1 diabetes at the age of 40 could have seriously disrupted my life and career as a school teacher. Teaching is a mentally and physically active job, in which the tag “Sir” comes with an expectation that you be “in control”. A condition which makes you prone to hypoglycaemia, leaving you helpless and vulnerable, albeit temporarily, is not easily compatible with being in charge of a class of teenagers. 

At the time of my sudden diagnosis at the age of 40, I was just six years into a senior teaching post as Head of Sixth Form, responsible for the lives and careers of 160 young people, and was also a classroom teacher of French, a job which included organising and leading a residential trip to France for up to 70 teenagers every year. I didn’t stop either role, so diabetes had to fit in with that lot, as well as my family life with three children, all aged under 13 at the time of diagnosis.

Like many other Type Ones, I have always taken the view that diabetes has to fit around my life, rather than fitting my life around diabetes. That’s perfectly possible. Diabetes is a condition, not an illness. The problem with Type One is that the life-saving treatment - insulin - is also the biggest threat to one's day-to-day welfare. 

It’s truly a love-hate relationship, and to make a success of this unwanted relationship means being one step ahead of not only the condition but also the treatment. So how do I keep one step ahead? Well of course it’s not always possible, but if I can, I try to anticipate and stave off highs and lows rather than reacting to them. Day to day life with Type One is all about avoiding highs and lows.

Meals, snacks and exercise are all a challenge, leading to either an uncomfortable high or a disabling low if I get the dose wrong, but any impending low or high can be averted by a well-timed snack or a small correction insulin dose and I am in absolutely no doubt that my greatest ally in trying to stay one step ahead of diabetes is my FreeStyleLibre flash glucose monitor, which does so much more than just telling me what my blood sugar level is. 

Years ago, not long after my diagnosis, I remember my wife saying to me, as I was doing a finger prick blood test, that what I really needed was a device that could tell me if the level was rising or falling. So when years later flash glucose monitoring became available, this dream became a reality. 

There are numerous advantages to flash glucose monitoring over finger prick testing, not least the lack of sore fingers and the ability to test an unlimited number of times - tremendously useful at times when I am busy, active, or both. But above all else, it’s the trend arrow, telling me whether the level is rising or falling, which is invaluable: let me give a practical example: 

You are probably aware that the desirable target range for blood glucose is between 4 and 8 mmo/L. That’s the level of a non-diabetic person. So let’s suppose I do a finger prick blood test and the answer is 6.0mmo/L. Sounds ideal. Bang in the middle of the desirable range. No action required. Forget diabetes for a few hours? 

Well no! Take that same reading on a FreestyleLibre and it would show me a trend arrow, indicating recent change in the blood glucose level.

I would see either a downward arrow, which could mean I am just minutes away from a serious and disabling hypo, or else an upward arrow, which whilst not threatening in the immediate sense means that I'm on my way to a period of discomfort, thirst, fatigue and, if repeated, serious long-term damage to eyes, kidneys, feet - perhaps the whole body. 6.0 may or may not require action, and only additional information can help decide. This, incidentally, highlights the outdated folly of the DVLA’s position on flash glucose monitoring as unacceptable as proof of fitness to drive. Once NHS funding is in place, a logical next step by the DVLA is to recognise not only that flash monitoring is acceptable, but that it is indeed vastly better in this context.

The FreeStyleLibre gives a much fuller picture of blood glucose than a one off snapshot by finger prick can possibly give. I haven’t even mentioned its ability to produce detailed records, highlight trends, and calculate an estimated HbA1c. 

My own HbA1c was never bad, but in two and a half years of constant use of the FreeStyleLibre it has fallen from 8.4 to 6.4. It has self-evidently improved my short and long term health, but at a cost so far of around £2500 of my own money, money which the NHS has not been spending on test strips for me during that time. 

Technology, especially technology which is relatively cheap, has a key role to play in a condition like diabetes, for which self-management plays such a big part. It is a source of regret and guilt to me that many others less fortunate than I have not thus far had access to this technology, and as a prominent advocate of the FreeStyleLibre I look forward to sharing the good news of its availability to all."

My address was warmly received. Now that NHS funding has been secured, I sincerely hope that many more will soon start to enjoy the benefits which I have enjoyed these past two years.

Going Back

I am writing this post as the wind and rain lashes at my windows. Only yesterday, I was barbecuing in the garden on a perfect summer evening, whilst just a week ago, I was picnicking in balmy sunshine at Lytham’s Fairhaven Lake.

But now it's a wet and windy Sunday afternoon at the start of September, and millions of households will be feeling a strong sense that summer has come to an end. School bags are being packed, pencil cases checked, name tapes sewn into clothing, clean white shirts and blouses taken out of wardrobes. Even in households with no children (or teachers) many will be contemplating a return to work after the summer break. It's time to resume our routines: Farewell, summer days.

In France, this sense is far stronger. It's a season: la Rentrée.  Magazines, newspapers and lifestyle websites in France are full of articles about how to cope with la Rentrée. People wish each other a “Bonne Rentrée”, meaning good wishes for a fresh start in life, work and everything.

For me, this will be the first time since 1962 that I have not started September by embarking on a new academic year. I have retired from my work as a schoolteacher, and so will not be going back to work this week. Yet I still feel, and always have felt, that September feels more like the New Year than the real New Year in January. I suppose this is because I am the son of a teacher, and although I am now retired, my wife and son are teachers, my younger daughter is a welfare assistant in a primary school and my older daughter is a university administrator. So my life is still shaped by the pattern of the academic year, and I have even bought myself a new academic year appointments diary, not least because my old one ran out on August 31st.

September has far more of a sense of change and new beginning than January. Days are noticeably shorter, nights are colder and as has happened today, the weather often turns cold, wet and windy. The sense of change is palpable, far more so than at the change from December to January. Going back to work, school, or university, or even starting a life of retirement as summer turns to autumn, brings with it a sense of renewal, fresh start and resolution. Even the football season is but young, and the sense of hope and optimism felt by every fan in the august sunshine has not yet been deflated by too many defeats.

May I wish all who read this a successful, fulfilling, and above all happy “Rentrée” and I hope that you are buoyed and not depressed by the prospect of cosy evenings by the fire and a new series of Strictly.

Here's a playlist to suit the season, including the one I chose as the title of this post: Going Back, by the incomparable Dusty Springfield:

La Rentrée: a playlist for back to work

Bonne Rentrée!

Rhinestone Cowboy: a tribute to Glen Campbell

#RIPGlenCampbell. Another musical great has gone to join the celestial band. No shock and disbelief this time: the deaths of many musical icons, however predictable they were with the benefit of hindsight, often take us by surprise. Elvis, John Lennon, Michael Jackson, David Bowie, Amy Winehouse, Prince and George Michael, to name but a few, all provoked just such a reaction. But Glen Campbell's demise, at the relatively young age of 81, was well trailed, not least by the man himself. He announced that he was suffering from Alzheimer's in 2011 and even joked about it in a farewell tour. His most recent single and album were entitled Adios – so nobody could claim to be as startled as they were by, for example, the news of George Michael’s sudden passing late on Christmas Day last year.

Yet as always, the death of a musical icon leads to a familiar routine of RIP hashtags, a spike in downloads and on-air and printed tributes. And I plead guilty to indulging in all of the above.

And once again, I find myself asking the same question: is he suddenly brilliant because he's dead, or are the tributes justified? For me, it's another no-brainer: Glen Campbell was very good indeed, and I've spent today trying to pin down just what was so special about him.

Well first of all, he was a very talented session instrumentalist. I learned today that he played guitar for, among others, the Righteous Brothers, the Beach Boys, Frank Sinatra and the Monkees. Anyone who played on Strangers in the Night and Daydream Believer already deserves a place in any hall of fame from 60s music. Timeless classics both. Try listening to Daydream Believer and not feeling better.

But Glen Campbell will be remembered above all as a vocalist, and in that he has few peers. The sheer range of his voice is awesome, but above all it is the emotion that he put into a song that marked him out. Story songs like By the Time I get to Phoenix, Wichita Lineman, and Dreams of the Everyday Housewife are utterly convincing in their expressiveness, much like a great actor has us believe that s/he is actually going through what happens in the play or film. By the Time I get to Phoenix is about a man sneakily leaving his lover in a cowardly manner, yet we feel sorry for him as much as her. The Wichita Lineman evokes our sympathy too, not only for his dedication to a tough and lonely job, but also for his sense of loneliness, whilst the eponymous unliberated everyday housewife is at the same time pathetic and heroic, yet so believable, not least in its 1960s context.

But for real emotion, try Honey Come Back. This came out in early summer of 1970, the carefree summer of songs like Mungo Jerry's anthem to drink-driving, In the Summertime, one--hit-wonder Mr Bloe's Groovin’ with Mr Bloe, and the 1970 World Cup in Mexico with its No 1 hit for Bobby Moore, the Charlton Brothers, Gordon Banks Martin Peters & co singing Back Home. I was 12 years old that summer, in my first year at secondary school, and had no experience of a relationship, let alone a failed one, yet Honey Come Back broke my heart, as this rejected nice guy pleaded with his lover not to fall for the charms of a city slicker smoothie. The spoken verses could easily be dismissed as unbearably cheesy, but it works. Glen Campbell could act as well as sing, as proved by his role alongside John Wayne in True Grit. Also desperately sad is Reason to Believe, another tale of rejection and undeserved forgiveness, and many other songs, including those recorded just recently, reveal great depth of emotion.

Yet perhaps what as a child and teenager appealed to me most about Campbell was the way he brought America into our lives, particularly with the help of master songsmith Jimmy Webb. By the Time I get to Phoenix taught me US geography. Wichita Lineman taught me about a job I'd never heard of. Galveston, the most subtle of anti-war songs, taught me more about the Vietnam War, whilst his best-known legacy, Rhinestone Cowboy, just oozes Americana: sidewalks, hustles, subway tokens, dollars, star-spangled rodeos, Broadway, rhinestones and cowboys, sung about by a square-jawed clean-cut nice guy in jeans and a check shirt.

A sad reminder of a time when the USA was a place whose culture and values we looked up to and secretly aspired to. Nowadays that is not quite so easy to do.

The fact that Campbell died of Alzheimer's disease adds to the poignancy for me, having seen my own mother physically and mentally whither away at a similar age. We have good reason to be grateful to him for leaving such an enduring musical legacy. 

If you’re too young to know his work, click on some of the links. Or access a Greatest Hits playlist here.

PS: my wife has just read this post, and points out, rightly, that another significant thing about Glen Campbell is that even she likes his music. And my wife is, by her own admission, famously ignorant of and immune to the charms of nearly all popular music.

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”

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.

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