With a Little Help from my Friends

The reason for the title of this post will become apparent when you have read it. I am always very reluctant to use my blog or social media to be negative and critical, but I feel the need to pass comment on a matter which has already attracted much comment elsewhere. Diabetes Care.

I won’t bore readers who already know me with chapter and verse on my Diabetes story – it is in this post if you don’t know it. Suffice it to say that I have been most fortunate, in that I have lived for almost 19 years with Type One with minimal complications, good health and no significant impact upon my life and work. All I would say is that this is thanks in no small part to my own efforts, the care and concern of my immediate family, and in practical terms, the input of the health care professionals with whom I have dealt on a regular basis. Diabetes is hard work, all day, every day.

Six years ago, as a result of my consistently unproblematic condition, it was suggested to me by my hospital clinic that I should be discharged to the care of my GP practice. At the time, this was a welcome and appealing suggestion, which I willingly accepted. I had always found the six monthly clinics a nuisance rather than any help: I had to take an afternoon off work, which for a teacher means setting work for classes, travel to a crowded hospital with (at the time) appalling car parking problems, then sit for ages in a stuffy waiting room between various stages of a ponderous and inefficient process (one room for weight and height, one room for a BG tests, one room for seeing the doctor, another if necessary for seeing the nurses.) I always had a brief and frankly unnecessary chat with a consultant, who congratulated me on how well I was doing, exchanged a bit of small talk and sent me on my way. All very nice, but of no clinical value if the truth be told. The most meaningful and useful input was from the hard-pressed nurses, who scuttled from room to room, stopping to chat in the waiting area to check if I was OK for pens, was my meter OK etc.

The prospect of replacing all this with a convenient appointment at my local GP, ten minutes’ walk from home, was most attractive, and I took it. So for six years, I had this annual review, essentially just a standard GP appointment, but with a doctor who is designated a diabetes specialist in the context of the practice. I still had my twice yearly HBa1c test, annual retinopathy check, foot check and all the right questions from the doctor, so I was happy, and continued to have “good” control and a good HBa1c result (albeit creeping slightly upwards into the 8’s)

Then came the GBDOC. Again, no need to repeat the story – it’s here. But the GBDOC meant that I started to be able to “compare notes” on diabetes care with others. First of all online, then face-to-face with some, as I became more involved with the community. I was becoming more interested in my diabetes, not least with my children grown up and independent and my work life reducing to part-time semi-retirement. I started to realise that I was perhaps being short-changed on my care compared to others, and that perhaps I now knew more about diabetes than the experts who were caring for me. This suspicion was increased when in October 2015, after 6 months’ use of the FreeStyle Libre (which, needless to say, I had discovered via the GBDOC!), I presented at the GP practice with a sudden fall in HBa1c at my annual review. A clearly impressed doctor asked if I had been “doing things any differently”, and when I mentioned the clever little device that was enabling me to react to and control BG levels so effectively, he was stumped. He’d never heard of what many believe to be one of the most significant advances in diabetes management technology, and earnestly made a note of the name of the device. Fair enough, I thought. He’s a busy GP, not a consultant. And a nice guy, manifestly caring and conscientious.

I decided that it was time to see whether the hospital knew any better, so I ‘phoned the helpline to the nurses which I had been given back in 1997 and had never used. I also wanted to ask about a DAFNE course as a way of adding to my growing expertise in diabetes management. The helpline operates from 11-12 daily, is on voicemail until 10:59 and after 12:01 and engaged for the rest of the time. Have they heard of email? After repeated re-dialling, I got through, only to be told that as I was no longer a patient of theirs, I was ineligible for the DAFNE courses at their hospital, and whilst they could advise me over the phone in response to another query, namely about getting a new injection pen, they were really doing me a favour. I thanked them courteously and resolved to get referred back to the hospital.

And so it came to pass that yesterday, Monday 28^th November, I went on a sentimental journey back to the clinic I had attended for all those years. Some things have improved: there’s a smart new multi-storey car park, with modest charges and loads of spaces. The hospital entrance has been rebuilt and extended, and feels like a provincial airport or a railway station, with well-designed waiting areas, big-screen TVs everywhere, and branches of Costa, WH Smith and M&S Simply Food. I actually knew of these changes, as I had been to the hospital for other reasons (most recently visiting a pupil newly diagnosed with diabetes as it happens!), but even the clinic had moved on….a bit. There was an automated check-in system, which worked. Someone had realised that it makes sense to do weighing, measuring, handing over the urine sample and testing BG all in one room with two people, rather than three rooms with three people. So far, so good. And having done all that, I was seen within 15 minutes of arrival, and starting to feel I had made a good decision.

But then I went in to see the doctor. A consultant, I presume, although not the named person on the appointment. No sign of #hellomynameis. He was a pleasant, courteous man, but he just asked how I was, waited 5 minutes for a screen full of data to appear, and told me what I already knew from my recent GP review, that I had “excellent” control, and enquired about how I managed my diabetes.  I told him that I had started using the FreeStyle Libre 18 months previously and proffered my tablet screen full of Libre data. He looked blank, then startled. He had clearly never heard of it. I repeat, a diabetes specialist in a large teaching hospital at a clinic had not heard of a device which has been the subject of worldwide interest and is widely thought to be a big step forward in diabetes management. His response suggested that I was extolling the virtues of some quack herbal remedy: he showed no interest in my screens full of data, didn’t ask to see the scanner or the sensor, and clearly wanted the conversation to end, and to move me on to the nurse who would discuss my request for a DAFNE course.

Fortunately, my time was not wasted. The nurse had heard of the Libre, readily agreed to refer me for DAFNE and agreed that as I now had so much data about the minute-to-minute progression of my BG, it made sense to try fully to understand the impact of different foods on levels.

I returned home mildly amused rather than annoyed, to be told by my daughter that there was a voicemail for me on the landline. It was the hospital doctor I had seen about an hour previously, asking me to phone back, giving a bleep number and saying “there was something he needed to talk to me about” but that I had already left the clinic. Yes I had left the clinic, because he and the nurse had told me to.

I was mildly concerned, my wife panic-stricken. A phone message from a doctor asking me to call back and bleep him, less than an hour after I had seen him. Surely a sign that something was amiss. What hideous complication had reared its head that needed such an urgent response? I needn’t have worried. He just wanted to know if I ever suffered from any hypos, if I tested before driving, if I had had retinopathy screening and a foot check in the past year.

Yes, I do have hypos, it’s what happens when you have diabetes, but fortunately I know the signs and deal with them. Yes, I do test before driving, it’s the law. (as well as testing 20+ times a day with this mysterious new gadget). Yes, I have just had retinopathy screening and a foot check – it should be on my records. And that was it. He had clearly forgotten some of the script, and needed to call me to get the answers rather than risk being accused of negligence. I put the phone down and reassured Mrs L that I was not suffering from some hideous life-threatening condition which had shown up as a result of a finger prick blood test and a sample of wee.

So there you go. My journey from hospital care to GP care and back to hospital care. I think I’ll continue to rely on the GBDOC for advice and information. There are several doctors there, including consultants, who are happy to tweet and interact with patients who aren’t even theirs. And there are hundreds of people with diabetes just a tweet away, all with their own experience and expertise, all of whom are there to help. In fact, I’ll just get by With a Little Help From My Friends. 

Oh, and I look forward to meeting DAFNE next year.

It Came Upon The Midnight Clear

We have reached that time of year when Christmas music, be it sacred or secular, assaults our senses. The canon of secular songs forces its way into our consciousness from early November onwards whether we like it or not, and even though many of those songs are on our guilty pleasures list, it is difficult to avoid tiring of them before Advent has started, let alone Christmas. I try in vain to avoid them until well into December, yet have to admit to a frisson of childlike excitement when I hear Fairytale of New York or I Wish it could be Christmas every Day, to name but two, for the first time each year. And when Perry Como sings It’s beginning to look a lot like Christmas I have to agree with him.

Fortunately, sacred Christmas music is a little easier to avoid, in that it is less commonly heard in supermarkets and garden centres, but one is nevertheless likely to have sung O Come All Ye Faithful several times before we get anywhere near the “Happy Morning” on which we can sing “Yea, Lord We Greet Thee”. These days, the John Rutter standards are also likely to have become over-familiar by mid-December if you are involved in a church, school or choir, and I must even admit to a certain weariness with the standards such as Hark the Herald, While Shepherds Watched, Silent Night and even Away in a Manger.

Yet there are a number of wonderful Christmas Carols which are neglected, and would be unlikely to feature in the answer of any non-churchgoer asked to name their Top Five Christmas Carols. I would cite as examples See Amid the Winter’s Snow, Christians Awake (which can really only be sung on Christmas Day, and so in my memories of childhood carries a unique feel of excited Christmas Morning services) and above all, It Came Upon the Midnight Clear.

If you know a lot about me, you’ll now see where this post is heading: It Came upon the Midnight Clear is indeed a Unitarian carol, the only one to have reached the mainstream, written by Edmund Hamilton Sears (1810-1876), an American Unitarian Preacher and first heard in 1849. It is, and always has been, my favourite Christmas hymn. I inherited my love of it from my late father, unitarian minister and liberal theologian Revd Dr Arthur Long. We sang it at his funeral, just before Christmas 2006. To me, no hymn better evokes the message of Christmas, yet it is not exactly cheerful or festive, and some would say not even Christian. All the better for it, in my opinion. I am never sure how well known it is in our secular age, but I think any churchgoer will know it. For those who don’t, here it is, performed by the peerless Choir of King's College Cambridge in 2006:-

The first verse seems to be heading in a relatively orthodox direction, evoking traditional images of a still and silent night interrupted by the song of the Angels:

It came upon the midnight clear,

That glorious song of old,

From angels bending near the earth

To touch their harps of gold!

Peace on the earth, goodwill to men,

From heaven's all gracious King!

The world in solemn stillness lay

To hear the angels sing.

Yet Sears was writing at a time when he was preoccupied by events in a turbulent world, and with threatened revolutionary rumblings in Europe and the United States' war with Mexico on his mind, he portrayed the world in a later verse as dark, full of "sin and strife," and not hearing the Christmas message:

Yet with the woes of sin and strife

The world has suffered long;

Beneath the angel-strain have rolled

Two thousand years of wrong;

And man, at war with man, hears not

The love song which they bring:

O hush the noise, ye men of strife,

And hear the angels sing.

So here we have the Christmas message of Peace on Earth, Goodwill to all Men well and truly deflated. At this point, we are in the same territory as Greg Lake’s much-loved anti-Christmas song, I Believe in Father Christmas, which brilliantly debunks the peace and goodwill message. It Came upon the Midnight Clear could indeed be construed at this point as an anti-Christmas hymn. It has in the past been criticized for not even mentioning the Christ-child. British scholar Erik Routley wrote that "the hymn is little more than an ethical song, extolling the worth and splendour of peace among men."

So not very Christian then? Well perhaps not. Yet it is most ironic to learn that Edmund Sears, author of this "humanist" carol, was in fact a very much a Unitarian Christian. "The word God may be uttered without emotion," he told his congregation, "while the word Jesus opens the heart, and touches the place of tears." For Sears, Christ was the incarnation of the Divine Word, and a mediator who alone could bridge "the awful gulf between God and man." In other words, he saw Jesus Christ as the metaphorical, rather than literal, son of God. Pretty orthodox Unitarian Christianity: God reaching down to humanity, through his metaphorical son as a prophet, but his "peace" contingent upon a human response rather than by divine intervention.

Although as a Unitarian, Sears rejected the doctrine of original sin which is so central to mainstream Christianity, he saw all human groups and individuals as having the potential for evil. At the same time he wrote of people as fashioned in the image of God and blessed with varying degrees of development in their spiritual nature. So there is always the prospect of redemption, of good overcoming evil, leaving room for optimism and an uplifting conclusion to his hymn about Christmas which has become his only legacy of significance.

So for me, the most appealing aspect of this carol (other than Arthur Sullivan’s beautiful melody) is the optimism of the last verse, which never fails to lift my spirits in the face of so much that’s wrong in the world:

For lo! the days are hastening on,

By prophet bards foretold,

When, with the ever-circling years,

Comes round the Age of Gold;

When peace shall over all the earth

Its ancient splendours fling,

And the whole world give back the song

Which now the angels sing.

Naïve optimism? Arguably so at the end of 2016, a year in which we have so often been reminded of mankind’s capacity for stupidity at best, downright evil at worst. Yet if we can’t have hope at Christmas, seeing the coming of the Christ-Child as a symbol of light and warmth at the darkest and coldest time of the year, then truly we have given up on life.

A letter of hope

A few weeks ago, I was asked by one of my many friends from the online community to write a "letter of hope" addressed to those new to Type One diabetes, either in their own right or as parents. 

The lady concerned, Maureen, lives in Australia and has a son with Type One. She finds that in Australia, with its smaller population and vast size, it is less easy for people with diabetes and their families to connect with each other, and so she is putting together a website of resources. 

You can read about her project on her blog here: 

https://mumoftype1.wordpress.com/2016/10/19/letters-of-hope/ and follow her on Twitter as @mumoftype1

So this is what I wrote, and I offer it here as my piece for World Diabetes Day:

Dear Dia-buddie,

You, or your child, have just been diagnosed with a condition. Not an illness, not a disease, but a condition.

It’s a shock when it happens. Right now, it must seem to you and your loved ones to be pretty bad news. I hope you haven’t just heard a load of “don’ts” and “can’ts”, but it’s those that stick in your mind. Diagnosis with diabetes can seem very negative, and to be fair, medical people have to make sure you keep yourself well and don’t do anything to make things worse.

The trouble is, most people know a bit about diabetes, and they tend to remember the bad stuff, or the wrong stuff. Everyone thinks you can’t do this, can’t eat that, must be careful about this, shouldn’t do that.

Everyone claims to know someone with diabetes – but then it turns out to be Type 2, because that’s far more common.

 

Some will even be callous enough to tell a tale of their auntie, uncle, grandad or someone who had diabetes and went blind/lost a leg/died.

So how about a dozen positives:

•It won’t kill you.

•It won’t even make you feel ill much of the time.

•It won’t stop you doing anything.

•You can eat whatever you want.

•You can refuse food you don’t want and blame diabetes – nobody will dare argue.

•You’ll get free prescriptions for life.

•You’ll get regular health checks for life.

•You get some really cool techie stuff: pumps, meters etc.

•You can eat sweets and claim it’s a medical necessity. (it sometimes is)

•You can get out of a boring meeting by claiming your blood sugar is low/high.

•If you’re at school, you can jump the lunch queue.

•You will meet the most awesome people, your fellow diabetics.

I’m not just trying to make you feel better. I have lived with diabetes for almost 19 years, having been diagnosed out of the blue at the age of 40. Prior to that, I had been a fit and remarkably healthy individual. I still am. Diabetes caused a few weeks of adjustment, with some anxiety – more on the part of my family and friends than me, if the truth be told. But very soon after diagnosis, I resumed the busy and active life that I had always led, and I’ve just carried on that way.

Managing my condition is just a small part of personal care, no different from washing, shaving, going to the toilet, getting dressed etc. It fits around what I do just like those other life’s essentials do.

Diabetes doesn’t make your life any worse than it was before. It just adds a complication, like so many other complications that life throws at you at various stages.

But it gets better than that. You might find this hard to believe, but I genuinely believe that diabetes has enriched my life, developed me as a person, given me some of the loveliest friends I could wish for and is a whole lot of fun.

Let me explain. It’s all thanks to the internet and social media, so only in the more recent years of my life with diabetes. Once we in the UK realised that there were other people with diabetes out there, it suddenly dawned on a lot of us that the very randomness of diabetes makes a delightfully random community of people, whose different lives, ages and circumstances are all over-ridden by one big thing that we have in common – diabetes. It’s called the GBDOC (Great Britain Online Diabetic Community) and there are variants in many other countries. It’s a guarantee of friendship and mutual support which is truly life-affirming, and is used by people with diabetes as well as parents of children with diabetes. The good thing is we don’t even talk about diabetes all the time, yet we know we have that in common. We’re just friends.

So I have one big piece of advice for anyone diagnosed with diabetes or whose child is diagnosed with diabetes: find someone else out there who knows what it’s all about and connect with them. A problem shared is a problem halved? Well, as far as I’m concerned, a “problem” shared stops being a problem and becomes a source of friendship, support, fun and much laughter.

Live long and bolus!

Adrian

Born 1957

Diagnosed Type One Diabetes 1997

Still thriving 2016

I Vow to Thee my Country

I Vow to thee my Country is the obvious title for this post. I used to have mixed feeelings about this hymn, feeling that it perhaps glorified war and praised blind obedience. But I was wrong. It speaks eloquently and movingly of the values of those generations from the first half of the 20th Century who gave their lives, or scarred the rest of their lives, so that we who came along later could enjoy the fun, freedom and prosperity which they didn't. It also speaks, in the second verse, of a more noble and ideal kingdom, of which we all dream. And it's a perfect song for this rather different post:

This is a sort of guest post, but an unusual and special one for Remembrance Sunday. It is written by my late Grandfather, Cyril Edward Cyphus (1895 - 1989), because 100 years ago, he was one of tens of thousands of soldiers who were living in that man-made hell called the Western Front. He was 21 years old in 1916, a gentle country boy, born and raised in the village of Littleworth in Oxfordshire, where his mother was the village schoolmistress.

Cyril was a gentle man as well as a gentleman, a church organist by profession. He lived to a great age, so I knew him well, as a thoughtful, cultured and good-humoured man. The last thing I could ever imagine him doing was fighting. Yet he had felt obliged to answer the call of King and country, and so found himself on the Somme, having enlisted earlier in 1916, undergone a brief period of training, and sailed over to France in August 2016.

Here is a picture of him in his army uniform:-

He wrote his memoirs later in life, and described what it was like to live through two World Wars. Of course unlike so many others, he did at least survive, or else my mother, and so I, would never have existed. Here is a very precious picture of him, taken not long before he died, when he met his first great-grand-daughter, my first child Felicity. It features four generations, with a young-looking me and my late mother Margaret:

Whilst serving on the Somme, he contracted trench fever, and was brought home for a period of convalescence. He subsequently volunteered for the Tank Corps, and was back in France as a tank driver for the breakthrough which eventually ended the War. I will post further extracts as later events reach their centenary.

Here is the section describing his life in the trenches during the autumn of 1916:-

"For the next few months my memory is rather hazy which is understandable. Rations did not always reach us at regular intervals. There was one period, I remember, when food did not reach us for about 36 hours. By the time rations reached, us, a little had been taken here and a little there, and in spite of casualties they were always in short supply. Some buildings   at   Arras   remained badly   damaged,   but   in   most of the towns and villages in the area only rubble was left and there was little life.

There had been continuous heavy firing for a long time, and it still went on with no time to clear up the mess or bury the dead. Mules struggled, along carrying their loads with the greatest difficulty, for the roads were full of shell holes, some very deep, and the artillery of both sides was pounding away over our heads.

Occasionally one would come across an arm or a leg half buried as well as dead mules as we proceeded along the communication trench. Rats abounded everywhere. On one occasion I tried to sleep within a few yards of a long range gun and at another time I would be standing on the fire-step in the front line staring out into the darkness and very lights popping up from different directions, so heavy with sleep that the only way to keep awake was to arrange my fixed, bayonet in such a way near my helmet that I was awakened every time I began to nod. Although fraught with danger, looking out into no-mans' land in darkness was such a strain that survival did not seem to matter.

Two hours on the fire-step and four hours in the dug-out at the back of the trench, among the rats was the order of the day - and night - in the front line, but of course one often had to do extended periods as casualties mounted.

Back in the dug-out it was difficult to keep one's food from the rats who would nibble through a canvas haversack in no time. Names like Bapaume, Albert, Frecourt etc., had little meaning for they hardly existed, but the statue of the figure of the Virgin Mary in a horizontal position on the ruins of Albert Cathedral was a well-known land-mark.

There was a network of muddy trenches, the stench being drowned by the smell of chloride, the never-ending sound of guns, large and small, with sporadic bursts of machine-gun fire, and at night, very lights provided a continuous fire-work display. Ours were much inferior to those of the Germans, as was the case of all other material and equipment. Sleep could only be had in snatches. One was so miserable with filth and vermin that only one thought was uppermost in one's mind: a forlorn hope of eventual release. A remarkable sense of humour on the part of the lower ranks particularly made these conditions tolerable, and kept one alive with a glimmer of hope. During these months an extraordinary sense of optimism based on ignorance kept me going.

Early in November 1916, owing to pressure from the public, the authorities in the War Office decided to release some of the soldiers who had been in France since 1914 or 1915 and replace then with NCO’s and men who had been holding safe office jobs in England. These men arrived in the front line having had no training and no experience in trench warfare. One of these NCO’s was put in charge of our section of the line while I was on duty in the front line, and being new to France, he did not understand that there was no place for "red tape" in the front line and this made him unpopular among the men.

I had been put in charge of a gas alarm, in case of gas attack, when I as taken ill with a high temperature.    Now because men so often faked illness by chewing cordite or by other means, little notice was taken of anything but wounds. However it was obvious that I was in a bad way and this new NCO gave me permission to lie down in the dug-out. Soon a young officer came along and asked why there was no-one in charge of the gas alarm. The corporal had omitted to send anyone in my place and would not admit it, and I was hauled before the officer and charged with leaving my post without permission, a serious offence. I was remanded and sent to report to the nearest MO and because of my obviously weak condition, another private was sent with me to carry my rifle and equipment as well as his own and to struggle along two miles of communication trench to the Medical Office where the MO. arranged for me to be driven to the nearest Field Ambulance.

A field ambulance was a group of Nissen huts a safe distance behind the lines which served as a temporary hospital for men with minor ailments who were usually sent back to the front as soon as they were well enough. The beds were covered with three blankets of a dark brown shade which was infested with bugs (or fleas) and there was a staff of RAMC orderlies to attend to us, but not a woman in the camp. The chateau in the grounds provided accommodation for the staff, who lived in comparative luxury.

During the three weeks that I was there, I was entirely isolated from anyone I knew and cut off from means of communication as no letters were forwarded. This was particularly hard for me, because I was there for my 21st birthday and none of the parcels or letters sent to me ever reached me!"

I hope that readers of my blog will appreciate this insight into what Cyril, and thousands like him, went through. Truly, those of us born after these events have nothing to complain about, however "stressful" our lives may seem.