Do you really want to hurt me? Language matters.

I am a linguist by profession: words and language are (or were) the tools of my trade. I have therefore followed with interest the conversation that has developed over the past year or so regarding the use of language in healthcare.

Fundamentally, as Dr Partha Kar pointed out in this recent post, it’s a simple question of good manners. Whether it’s the #HelloMyNameIs campaign so admirably started by and perpetuated in the name of the late Dr Kate Granger or the NHS #LanguageMatters campaign arising from the thoughtless language sometimes used to talk about diabetes, choosing appropriate words is a matter of common courtesy. Our sophisticated power of speech is what distinguishes us from other animals, and words are wonderful things, but can also be very powerful and hurtful weapons.

However, at the risk of clouding an age-old and simple issue of manners, I do feel that the issue of language has become more difficult in our increasingly connected, hyper-communicative and instantly reactive world. And the problem extends well beyond the world of healthcare. At the risk of seeming like an anti-internet reactionary (which I am anything but), I feel that the written language has become so common a currency that it has perhaps become devalued and under-estimated.

The ease and ubiquity of exchanging words with a far larger audience than was possible just a few years ago means that the words that we so readily use have a far greater reach. We have all become potentially influential writers, with the power to persuade and influence but also to hurt far more people than just those around us.

The English language in particular is wonderful, and in many ways deserves to have come to dominate communication across the world in the way it has done. Our language is uniquely rich and subtle, and has the ability to adapt and change at bewildering speed without losing its power or its charm.

Yet perhaps one aspect that requires more thought and attention is the way in which divisions between the spoken and written forms of language have become blurred: thanks to ICT, we all now communicate far more in writing than in the past, using text, social media and email to communicate in a way which just wasn’t possible in the past. Some moan about sloppy language, grammatical errors, and the use of abbreviations, acronyms and emojis as evidence that standards are falling, yet I see some marvellously expressive use of language in the online world.

However, what we are in danger of losing is the ability to distinguish between appropriate registers of language. In effect, we all now write as if we are speaking, which is great, but overlooks the fact that the written word (as seen on the screen of our phone or tablet) has a potentially hurtful permanence that the spoken word does not. We all say things in the heat of the moment which are hurtful, but we can apologise, explain why we did it, then perhaps say the same thing in a gentler way and in so doing start to put the hurt right. But anything written, for example in a Twitter post, stays there in perpetuity, such that it retains the power to cause harm and upset in a way which may not have been intended. If you need proof of the problem, we now have a US President who appears to think it wise to share his impulsive and at times ill-considered thoughts with the world using Twitter. 

The decline of formal registers of language is in some ways commendable: the Plain English Campaign has done much to ensure that ordinary people can understand complex specialised documents and that rich and powerful people and organisations cannot hide behind unnecessarily opaque language. But there is a place for formal and restrained language which has been carefully crafted, considered and reviewed. The sort that was in the past used in letter-writing, dare I say?

Our written language has, quite understandably, become very "chatty". Which is fine in its own way, as long as we don’t overlook the context or the importance of what we are saying. If there are no boundaries to what we say, no conventions and taboos, we risk causing unintended harm, and using words which are far too strong for the context. In particular, swearing has been massively devalued (as happened years ago with the French language), such that it has completely lost its impact yet has retained the power to cause offence and upset. I am not against the use of swear words, but there is no point in having them if they lose the power to add an element of shock and emphasis to what I say. So on the very rare occasions when I do swear, people know I am really annoyed. And I would never swear in writing unless directly and privately addressing trusted friends. The casual use of previously taboo words in the online world has to some extent undermined the power of those words, yet they are still nasty: people say “WTF” without thinking what they are actually saying, and casually insult those of whom they disapprove using slang words for the genitalia of both genders. There was an amusing lack of irony which I saw in a supposedly supportive response to Partha’s post calling for people to be gentler in their use of use of language by someone saying “It's surprisingly simple to not be a dick”. Talk about fighting fire with fire...

So perhaps some of the keyboard warriors out there should remember that although they may think they are just “talking” online, they are in fact writing, and in so doing can cause more hurt than was intended. And just because the object of our anger is a doctor, a politician, a footballer or a celebrity does not mean that he or she has no feelings.

Language matters, and words can hurt: but “Do you really want to hurt me?”

Nice One Cyril

My title could  perhaps be deemed somewhat frivolous, given the nature and content of this "guest" post, but I couldn't resist it. 

Nice One, Cyril was a popular catch phrase in the early 70s used in a bread advert and this hit single, a tribute to Tottenham Hotspur and their classy left back Cyril Knowles. My late grandfather Cyril Cyphus, already by then an old man, was mildly amused to see his anachronistic name briefly the subject of a minor cult in popular culture. 

I have already posted some of my grandfather's writings from the time of the First World War in this blog post back in 2016, and I was reminded last week by commemorations of the centenary of the Battle of Amiens, the beginning of the end of that dreadful war, that he played a key part in those final days of the Great War. 

He was invalided out of the trenches in 1916 as told in that previous post, but enlisted in the newly-formed Tank Corps and was among those specially trained to drive this new weapon. As is widely recognised by military historians, it was the invention and deployment of tanks which hastened the end of the futile stalemate of trench warfare, and so it is a source of pride to me and my family that our grandfather played his part in this piece of history.

Cyril Cyphus in the uniform of the Tank Corps

All the more remarkable - almost ridiculous come to think of it - is that after the War, Cyril never learned to drive nor ever owned a car. This gentle, cultured and mild-mannered man drove a tank through enemy lines in the searing heat of August 2018, but never had the pleasure of motoring!

Here is the key extract from his (unpublished) memoirs "From the Hot Air Balloon to the Man on the Moon" in which he tells the story of his life through the turbulent twenieth century. It tells of what happened in Northern France exactly one hundred years ago at the time of my writing this blog post:

"Twenty battalions of tanks were being trained for a big offensive with the object of bringing the war to a conclusion.

The tanks were of two types (1) heavy tanks (30 to 40 tons when loaded with guns and ammunition) and (2) light whippets, much smaller.

The heavy tanks, which carried six pound guns and/or Hotchkiss machine guns could only travel 3 or 4 miles an hour in favourable conditions while the whippets, carrying machine guns only, could travel up to 12 an hour. The early models of heavy tanks on which we had trained needed four men to crank up the engine whereas the later models, although they still needed the same number of men to start the engine, could, owing to the invention of the epicyclical gear, now be driven by one man without the need for two secondary gears men.  The crew of the heavy tanks consisted of one officer, one NCO and six men and half that number with whippets, but always an officer with each tank and usually an NCO as well (corporal or sergeant).

We had now been in France about four months, giving us time for experience in tank maintenance in comparative comfort and, having moved up nearer the front, on the night of 7th August, 1918, we had been partaking of dinner in the officers’ mess (a bivouac) consisting of several courses made by the cook very cleverly from next to nothing, when our company commander, Major Drader, said, in his customary way; “Gentlemen, you may smoke.”  There was something in the atmosphere that put us in an expectant mood.  It was then that he outlined a plan of campaign that was to take place within a few hours.  Sitting in the bivouac after dinner not far from the front, we had many forebodings, but we knew our strength and were optimistic.  What we did not anticipate was the great resistance that was to be put up by the Germans in the first weeks of the offensive we were about to undertake.

The plan was to creep forward on half-throttle at 4am zero (all watches having been synchronised) while low flying ‘planes would drown the noise of the engines and allow us to reach the starting point for twenty battalions of tanks stretched along the line followed where possible by infantry.  Major Drader said that it was to be the beginning of the end of the war.

There was the preliminary barrage from long range guns passing over our heads and as we moved forward, the low-flying planes moved away. I had to go into action without my corporal, a most reliable NCO.  He had been hit in the arm by a stray bullet on the way up and had to be left behind to the ambulance men following us.  It was pitch dark and very misty and I had to lead the drivers into action by the light of a lighted cigarette walking in front of the tank, a risky thing to do in case of obstacles in the way.  It was so hot inside the tank by the heat of the engine that I left most of my clothes behind at the base and went into action wearing a cotton shirt, cotton shorts and carrying revolver, ammunition and gas mask (a stupid thing to do).  My route had been marked out on the map I was carrying by the reconnaissance officer.  I was to proceed on a route parallel to the Bray-Corbie road but about 500 yards to the left.  I still possessed the map until recently when I destroyed many papers etc for want of space.

The battle raged throughout the night and we suffered some casualties.  I returned the following morning to our company headquarters with my crew intact but exhausted.  I brought back an anti-tank rifle that was soon abandoned because it gave a kick when fired.

In the calm of daylight I went forward with the driver in a lorry to retrieve some of the valuable tools that had been left in the derelict tanks after they had been burnt out.  Before reaching each tank I knew by the large white letters and figures which officer’s body together with those of his men would be found in a charred heap inside the tank.  These were some of the worst moments I have ever experienced.  We also spent the day refuelling our tanks and making preparations for the next offensive.  Because of the casualties we had sustained there was a switch round of tanks and men.  Two of my best men were taken away and in their place at the last moment, two men, who had been cooks and had little or no knowledge of tank training and how to fire a Hotchkiss machine gun.  I had to give them hasty instructions on safety procedures etc and how to act if the feed of the gun became jammed which it often did.  These instructions were not carried out, much to our cost later.  Also because of this I had no time for a final inspection of the tank, and after starting out it was found that a couple of nuts in the gun turret were missing, causing a big gap every time the tank lurched in a certain direction, necessitating the strength of two men to hold it ins position when they should have been holding the guns.

We returned to the company headquarters which was moving forward all the time, for a few hours rest and to satisfy our hunger before setting off again in still beautiful August weather.  Another officer, Davies, a Welsh man, joined me with his tank as we set off ready to fan out later on and wait at the foot of a steep bank for zero hour 5pm (17 hours).  We were then to advance in front of the infantry and at the same time there would be a barrage of artillery fire from behind us.

When we arrived at our starting point we found a battalion of infantry awaiting our arrival.  The colonel in charge sent a man to invite me to speak to him.  What were my orders?  He asked.  I told him that we were to proceed up the hill at 1700 hours precisely.  He said, “If you do, you’ll be blown to pieces, but don’t take your orders from me.”  There was a field gun just over the brow of the hill that would have its sights trained on us, he told me.  I conferred with Lt Davies and we decided to delay our starting for a few minutes by which time we should know whether the colonel was right when he said that zero hour was 1730 and not 1700 hours, if the artillery still remained silent at 1700 hours.  The colonel was right and our orders wrong!  To follow our orders would have sent us to certain death.  At 1730 hours there was a deafening noise as the artillery belched out their shells and, at the same time we moved forward.  The field gun was there as the colonel had said, but it had been forsaken and the gunmen were in full retreat.  By now the infantry relied on tanks to draw the fire and did not like going into action without them, although rifle fire could not penetrate the tanks.  There was a certain amount of lead splash from rifle fire and we were issued with chain masks to counteract it, but they were unpopular and soon discarded as an encumbrance.  We had at last flattened the barbed wire known as the Hindenburg Line, after the famous general of that name, and the advance continued."

A First World War tank of the type driven by Cyril

As always, when I read accounts of what our forefathers went through in the recent past, I am humbled. So yes, at the risk of trivialising true heroism, "Nice One, Cyril"

Looking After Number One?

Readers of my blog will know that all my posts are given song titles. So for this one, I browsed through my Irish songs playlist looking for a suitable title. Amidst some gems ranging from Thin Lizzy to Dana, I was reminded of the exhilarating emergence of the Boomtown Rats in the summer of 1977, adding sophistication to the raw energy of punk which had ruffled so many feathers over the previous year. Long before he became a fêted anti-poverty campaigner, Bob Geldof encapsulated the zeitgeist of that summer with an anthem to self-interest - Looking after Number One. Click on the link and discover it or remind yourself. Great song, but not my values, nor those of Mr Geldof in later years. Let me explain in these reflections on DX Dublin, the fourth meet-up of European diabetes influencers organised and sponsored by Abbott healthcare.

Much of the content of these conferences is only obliquely related to diabetes, but it was during a session on the second day led by two senior figures from Abbott Diabetes Care that I was reminded how much has changed in the four years since I started talking about diabetes online, let alone in the 20+ years that I have lived with the condition.

We were presented with some statistics about the take-up of FreeStyle Libre flash glucose monitoring system around the world which make clear how rapid the spread of this piece of technology has been. A glance at diabetes social media over the past year shows how access to technology remains a dominant issue for those who live with the condition, and the statistics on the spread and growth of access to flash monitoring throughout the world makes clear what a real appetite and need there is for something more sophisticated than just pricking your finger as and when possible and convenient.

FreeStyle Libre has its critics, and like any technology, it’s not perfect and not for everybody. But I well remember at the first real-world meet-up of people with diabetes (#PWDC15 at Nottingham) when Lis Warren, already by then a veteran of 50 years’ experience of living with Type One, told a group of us that continuous glucose monitoring had been the biggest single leap forward in managing her condition. This was shortly after the Libre had been launched, and at the time, a very small group of people in the UK and a few other European countries were using it. 

"Proper” CGM was - and still is - an expensive luxury beyond the means of most ordinary people and certainly beyond the means of any publically funded healthcare system. Libre, however, has quickly proved itself to be a pragmatic compromise: a discreet and reliable way for many to keep tabs on their blood sugar levels without being pestered by alarms, at a cost which is affordable to some self-funders, and more importantly affordable enough to be seriously considered for public funding. Four years on, the dream of non-invasive and continuous monitoring “for the many, not the few” is still far from reality, but a good deal closer.

But the most interesting point made by Jared Watkin, Senior Vice-President of Diabetes Care at Abbott, was that the FreeStyle Libre was the first significant new diabetes tech product launch to have taken place in the full and unforgiving glare of the social media era. As such, the progress of the device, the praise, the reviews, the criticisms, have all taken place largely in the unregulated, unpredictable and uncontrollable world of Facebook, Twitter and Instagram. Previous new devices and therapies were perhaps advertised in specialist publications, marketed to healthcare professionals by sales reps, but with patients largely dependent on others for knowledge and access to advances in their care.

Not for the first time, this makes me feel lucky to be (just) young enough to be part of this phenomenon. Jared and his colleagues reminded us of the massive cultural change that companies such as Abbott have had to adjust to, with their product and the customer support for it subject to constant review and comment in a manner impossible to imagine even a decade ago.

I am very fortunate to be one of those members of the patient community who are asked by companies like Abbott to play a (very small) part in this process. There are voices in the online community who criticise those of us who are “affiliated” to the healthcare industry, and it is easy to make cheap accusations that we are the undeserving recipients of benefits and sweeteners from an industry only too keen to cultivate a group who will sing their praises online.

In truth, those who take part in events such as the DX series organised by Abbott are in my experience interested in only one thing, and that is to attempt to represent the diabetes patient voice in their own countries. And to allow such people the chance to meet together and compare and contrast experiences is of huge value not so much to them as individuals, but to the communities of which they are a part. 

My favourite moment at DXDublin was during a session on patient advocacy when I found myself in a small group discussion with Dimitris from Greece, Weronika from Poland, Bianca from Brazil and Melanie from Wales. How else could we five have ever found ourselves around the same table discussing living with diabetes in our very differing circumstances? The value to the communities in which we live is difficult to prove, impossible to quantify, but very real in my opinion.

An Englishman, a Greek, a Pole, a Brazilian and a Welshwoman

Yes, we had lots of fun and laughter over the weekend, yes I loved spending time with some who are already good friends and others whom I was meeting for the first time, but the engagement and commitment shown by all to diabetes advocacy in their home countries is truly awe-inspiring. 

Expert patients from across Europe

The weekend’s programme included valuable sessions from experts in communications and advocacy - for me the most memorable being the hugely impressive Tiernan Brady, one of the most prominent LGBTI rights and equality campaigners in the world. His humble and good humoured but powerful session on how he helped secure the epoch-making votes in favour of gay marriage in Ireland and Australia was truly inspirational for me and many others in the room, and taught us much about the art of persuading and representing in our hyper-connected world.

#DXDublin was a wonderful experience, an opportunity for which I am truly grateful, and I wish to thank all those who worked so hard to put together and deliver the programme, and also those who took part. It is very hard to resist the oft-stated conclusion, surrounded as I was by people with Type One from all over Europe and beyond, all of them significantly younger than me, that people with diabetes are almost invariably outward-looking, generous-minded and sensitive individuals.

Diabuddies from across Europe and beyond

So why the title? Let's say that far from Looking after Number One, DX helps us to make a better job of Looking after Type One, not just for ourselves, but also for others.

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

Ride My SeeSaw

There's no shortage of metaphors to describe life with Type One diabetes, so no shortage of song titles for my diabetes-related posts. It's all about balance, so let's say this one is all about trying to Ride my Seesaw, and the Moody Blues had a song for that. Click on the above title, for one of those "so uncool it's cool" videos.

I sometimes think it has all been said already about Flash Glucose monitoring, but I hope that this post might just help those working in CCGs around the UK in their deliberations on whether to approve access to FreeStyleLibre sensors on the NHS for people living with Type One Diabetes.

In personal terms, I live in an area where a policy is “under review” and I am cautiously more optimistic of a positive outcome having had the opportunity to put the case to the CCG at a public meeting a few weeks ago.

But in less selfish terms, I was dismayed last week when a good friend of mine from the diabetes community (living in West London) told me that she had been informed by her GP that she would no longer be prescribed FreeStyleLibre sensors, because they are “too expensive”. The woman concerned is herself a Type One who cares for her 5 year old daughter who is also Type One, and she had initially been prescribed sensors for herself and her daughter.

In other areas of the UK, she and her daughter would both be eligible for sensors on the NHS and would be benefiting from more frequent, non-invasive testing, more detailed information about the direction of travel of blood sugar levels and graphical data enabling her better to manage her and her child's sugar levels, thereby reducing the risk of serious and costly complications in the future. And equally importantly in my view, doing so with less mental and emotional strain. All at a cost to the NHS which is very modest compared to that used for many commonly prescribed drugs and treatments for other medical conditions.

So why does this matter? Are we being treated unfairly or are we, as a BBC journalist who interviewed me recently put it “just after the latest gizmo”?

Well, I have been a self-funding FreeStyleLibre user for over three years, and this past week, a little bit of Libre-assisted self-management on my part brought the issue into focus for me, making me realise how hugely beneficial even this relatively unsophisticated piece of kit can be.  It enables us to keep blood sugar levels close to the desirable range and more importantly to prevent longer term average levels from creeping upwards, causing the sort of insidious damage which can and does lead to serious complications.

Let me explain: I had a very busy two months in May and June, returning to my former place of work for a stint as an exam invigilator along with a number of one-off events including a five day visit to France leading a twin town delegation (driving there and back) and a two day filming assignment in London for a forthcoming appearance on BBC TV's “Pointless”. During this time, I must confess that my diabetes management reverted somewhat to the strategy that I used throughout most of the first sixteen years of living with the condition: I allowed my BG levels to err on the high side, aware that this would minimise the risk of inconvenient, embarrassing or even dangerous hypos.

This is a perfectly reasonable strategy given that I was appearing in a primetime TV quiz show, driving a 1000 mile round trip and invigilating public examinations at various times, but it is frightening how quickly a bit of neglect of tight control pushes averages up. Without FreestyleLibre and its detailed feedback, the upwards creep of averages would probably have gone unnoticed until an HbA1c result at a clinic review. And of course subtle damage is already under way whenever blood sugars are out of range for any length of time.

But for those like me who can use it wisely without becoming over-obsessed with every twist and turn of blood sugar, the FreestyleLibre is an invaluable source of information, a sort of Dia-Jiminy Cricket who can act as a conscience if things are going astray. A week or so ago, I looked at my average BG and noted that it had crept up to 8.9, having typically been around 7 since I started on FreeStyle Libre 3 years ago.

So last week, which was significantly less busy than the previous few, I resolved to improve things. I decided just to keep a closer eye on my blood glucose, to check levels a little more frequently and to react to them with correction bolus doses or snacks. Nothing clever, no elaborate calculations: just a common-sense response to some easily interpreted data presented on my phone screen.

And guess what, in just one week, things got better. Look at these screen shots, firstly this one showing the 90 day average, with the tell-tale orange bars reflecting those higher-than-desirable levels of recent busy weeks:

And secondly this one showing the results of my week of more intensive checking and reacting, with the green bars showing a significant improvement and the average at 6.7, down from 8.4:

Could this have been achieved with conventional finger prick testing? Theoretically yes, but in practice no. The ease of frequent testing, the instantly available average data, the trend arrow to enable safe and effective reactions to impending highs and lows are just not possible without a FreestyleLibre.  And yes, the inner child who is never far from the surface in this 60-year-old me, rather enjoys the reward of seeing those green bars, like getting merit stickers from a teacher. I'm easily pleased and amused.

But perhaps most significantly, it’s the fact that it helps me to self-manage my short and long-term well-being. And if it’s cost that is causing some CCGs to either refuse to prescribe, or to impose ridiculously narrow criteria, then they should perhaps consider that helping and encouraging people with Type One diabetes to self-manage their condition with the help of a relatively cheap piece of technology is a very sound cost-saving investment.

Patience.....or patients?

It's an old joke, based like many on the rich supply of homophones in the English language:

“You need patience to be a doctor” 😂😂😂

Or is it patients? Hahaha.

Well of course, you need both. A doctor with no patients would be rather pointless, whilst a doctor with no patience would be, well, unlikely to succeed.

But this post is about the role of patients in healthcare, specifically in respect of diabetes, as it's the area I know a bit about. Regular readers of my blog will know that all my posts have to have a song title, so please....have a little patience. Or maybe some patients?

I've noticed much discussion on the role of patients in diabetes care ever since I started using the informal diabetes peer support network known as GBDOC around 5 years ago. In diabetes, especially Type One diabetes, the role of the HCP is to teach the skills needed to live with the condition, then to leave it to us patients to get on with it. 

The skills and knowledge required are daunting and all-too-familiar to those of us who have had to learn them: calculating, checking, testing, guessing, and judging; handling and operating advanced, expensive pieces of kit; and above all self-administering constantly varying doses of an expensive and potentially lethal drug whilst continually monitoring its short and long term effects.

In the case of those diagnosed in childhood, this expertise is learned and practised by parents and carers, then handed over to the child, often at a fairly tender age, to allow them to live as normal a life as possible as a teenager. Is it any wonder that people with Type One are so often exceptionally resourceful, composed, capable, balanced and empathetic individuals?

People with diabetes, and parents of children with diabetes, are, in effect, experts in the condition. Now of course, that is to an extent true of any medical condition. If something affects you or your loved ones, you very quickly know all there is to know about it. Fifteen years ago, I and my family suddenly became very knowledgeable about embolization and stereotactic radiosurgery when my son suddenly presented with a previously undiagnosed life-threatening arteriovenus malformation. He owes his life to the NHS, a pioneering German radiologist at the Walton Centre in Liverpool and radiographers at the Hallamshire in Sheffield. Seven procedures on his brain virtually eliminated the risk of a fatal haemorrhage.

But there's a crucial difference: in my son's case, as in most other diseases and conditions, all we could do was stand and watch in awe and fear as the doctors, nurses and radiologists did their thing. The expertise was manifestly theirs, even if the unwanted knowledge was ours.

Whereas with diabetes, it's the patient (or parent) who is the expert. S/he administers the treatment, assesses its effects and adjusts it constantly according to a range of factors – and does so 24 hours a day, 365 days a year, for life. Input from HCPs is minimal compared to that of the patient.

Which is why - and I apologise if this sounds pompous - I was elated by a response I received when recently I was given the opportunity to speak to members of my local CCG in support of the widening of access to CGM, flash monitoring and insulin pumps on the NHS in my home area. I spoke about the life-changing benefits, both physical and mental, that I and many others have experienced from self-funded use of the FreeStyle Libre to help monitor blood glucose levels. At the close of the meeting, a senior member of the CCG, a GP with forty years experience in general practice, referred to my submission as that of an “expert patient” and urged his colleagues to take strong note of my input in reaching their forthcoming decisions on access to FreeStyle Libre sensors on prescription. I walked out of that meeting feeling valued, understood and supported, because a man whom I respect and consider to be an expert in medicine had acknowledged me to be an expert in my own very small way.

So therein, surely, lies an important way forward for diabetes care. Of course we require education and training by experts,  both initially and when necessary along the way, rather like a pilot learning to fly. But once we can fly – and most Type Ones are pretty good at that “flying” – we just need the appropriate support, checks and the latest equipment where feasible, and an acknowledgement that we know pretty well how to get safely through our days and nights of flying. Judgements and criticisms from those who - to extend the metaphor – know how to fly but have never actually flown, are most unhelpful.

As we enter Diabetes Week 2018, I am delighted to report a growing awareness of patient expertise and its role in diabetes care. A small but influential band of doctors - known as the #DocsOfGBDoc - and their DSN colleagues have engaged with the online patient community through #GBDoc chats both structured and unstructured in a spirit of cooperation, professional inquizitiveness and humility, to the extent that I and others consider them to be friends, and many users of the #gbdoc know them better than their own HCPs.

Of course HCPs should not feel compelled to interact informally with patients, especially their own patients. There is a place for professional distance and those HCPs who use social media such as GBDoc should be aware that eloquent, plausible  and forceful patients may not necessarily represent the majority and can become disproportionately influential at the expense of a more reticent minority.

However, I salute those HCPs who do engage with the patient community and thank them all for their friendship and support. Perhaps they could remind others that patience and patients both have a crucially important part to play in healthcare.

Come Down, Oh Love Divine: Guest post by Mr Long Jr

A few months ago, my son and housemate Nick responded to a request from the editor of our church's Parish magazine to write a piece about his favourite hymn.

To mark Whit Sunday, or Pentecost, I asked him if I could publish his piece as a guest post on my blog. With the country still giddy with excitement about the Royal Wedding, not least about the showstopping address by American Pastor Bishop Michael Curry on the power of love, it seems as good a moment as any to publish what I find to be a very powerful statement about Nick's brand of understated yet very real Christianity; it gives me great pleasure to know that it owes much to his father and late grandfather. I hope that those who feel that Christian faith is all about narrow-minded, dogmatic adherence to a set of beliefs irrelevant to the modern world will read this and see that maybe the timeless values expressed by Jesus of Nazareth are as valuable today as at any time in the past:-

When I was asked that I write about my favourite hymn for the magazine this month, I assumed my task was a simple one. But it has only dawned on me, in writing this, that I’ve never actually considered what my favourite hymn is. Now, having considered it for some time, I still don’t know. The choice, it turns out, is too hard.

What follows, then, is my thoughts on one of my favourites, amongst many. I’ve chosen to write about “Come Down, O Love Divine”.

Come down, O love divine, seek Thou this soul of mine,

And visit it with Thine own ardour glowing.

O Comforter, draw near, within my heart appear,

And kindle it, Thy holy flame bestowing.

O let it freely burn, ‘til earthly passions turn

To dust and ashes in its heat consuming;

And let Thy glorious light shine ever on my sight,

And clothe me round, the while my path illuming.

Let holy charity mine outward vesture be,

And lowliness become mine inner clothing;

True lowliness of heart, which takes the humbler part,

And o’er its own shortcomings weeps with loathing.

And so the yearning strong, with which the soul will long,

Shall far outpass the power of human telling;

For none can guess its grace, till he become the place

Wherein the Holy Spirit makes His dwelling.

For me, “Come Down, O Love Divine” represents our faith at its most fundamental. It is a meditation on a simple, powerful concept: God is Love. The words – written by Bianco Da Siena in the 15^th century, and translated by Richard Littledale in the 19^th Century – explore what “God is Love” could mean for us in our lives.

Despite the hymn’s ancient provenance, the tone of the thoughts expressed feel very modern to me. There is no talk of sacred truths, nothing boastful, no sense of anything absolute or definitive. Instead there is something cautious in the “yearning”, “lowliness” and “seeking” described. It is a Christianity I understand.

What I perhaps like most about the hymn’s words, though, is the manifesto for living that the verses deliver. In four beautifully-crafted verses, we are gently invited to imagine a life that is led by love. Verse two, for example, explains exactly why Christian living is desperately needed in the modern age. In a world addicted to “stuff”, where we consume natural resources with impunity, where our short-term thinking is quite literally putting our planet’s survival in doubt, the call for earthly passions to “turn to dust” rings true. In verse three, the “lowliness of heart” described could be seen as an important antidote to any one of our numerous failings as a species, from our contempt for the natural world, to our obsession with the “self” over the collective, to the empty grandstanding that characterises all levels of our politics.

As I understand the final verse, it presents a daring speculation, a hope, as to the world that could exist if people were to follow this way of love, and “become the place wherein the Holy Spirit makes his dwelling”. It speaks, to me, of the prospect that we might one day come to see ourselves as one planet, and properly work together to create meaningful lives for everyone on it. That would, for me, be the true meaning of “Love divine”.

Let me write a final word or two on the music. I said at the beginning that my choice of hymn was a tough one. What swayed me was that this hymn’s music was written by Ralph Vaughan Williams, my favourite composer. All of his work is infused with a traditional English folk influence, which means that – despite his music being relatively new (by the standards of sacred music) – it has a timeless quality. I can think of no better accompaniment to a timeless message.

Powerful stuff from a gifted writer if I may say so. And he's not a writer by trade. He's a Physics teacher. And just in case you have never listened to this hymn beautifully performed, here it is:

We Are(n't) Family

You know sometimes there are incidents whose significance doesn’t dawn on you until you reflect on them in a quiet place on your own some time later?

Well I had one of those this last Friday, April 27^th 2018.

I had enjoyed a lovely evening of food and chatter with three friends at a restaurant near Victoria Station in London. There was me, Ellie, Steph and Izzy. We had spent the evening eating, drinking and chatting - nay gossiping - and laughing, and the time had come to pay the bill. Cue further laughter and chit-chat as we tried to work out who had eaten and drunk what. Our waitress for the evening had done a good job in striking the balance between efficient service and friendly banter, without being too intrusive, but when we were about to leave she couldn’t resist the temptation to ask: what was the connection between the four of us?

I guess most groups in a restaurant on a Friday evening are easy to read - intimate couples, celebrating families, boisterous work colleagues - but she clearly couldn’t work us out. “Have a guess”, I said, and her unconvincing guesses included father and three daughters, a boss and his employees: both basically saying “old guy with young women” But she had to give up, and was then visibly struck when we said that we were just friends from different parts of the country who share a medical condition.

All very obvious really, but the more I think about it the more it serves as yet another reminder of what a precious thing the diabetes peer support network known as the #GBDOC is. To a muggle like that waitress, it is clearly puzzling to see the likes of me socialising with the likes of Ellie, Steph and Izzy. Whereas to us, it’s just, well, what we do.

And of course that was just the start of it. The four of us were gathering for a weekend centred around the third TADtalk event, a day-long meet-up of people with diabetes organised by an endocrinologist from Portsmouth who happens to believe - passionately - in the power of connectivity among those who share a condition and those who help them to live well with it.

I, and many others have written and spoken about the power of peer support before, so in that sense this post is repetition of, or at least a variation on, a familiar theme. However, every time I meet with my fellow diabetics in groups large or small, every time I exchange easy banter with them on Twitter, I am reminded just how precious this phenomenon has become to me and to many others.

I will not describe the TADtalk event in detail, as others have already done it better than I can in tweets, or for example in this post by the organiser, but I will just remind myself and others that I have the good fortune to be part of something very special. As I adjust to retirement from a long career in a people centred job in which I was surrounded and kept young at heart by some wonderful young people, I now find myself surrounded - often virtually, but sometimes literally – by dozens of friends who have nothing else in common other than a pesky, 24/7, potentially life threatening medical condition. We are young and not-so-young, female and male, rich and poor, shy and extrovert, gay and straight, black and white, religious and secular. In short, we are people. The thing about Type One diabetes is it does not discriminate. So neither do we.

And the point is really this: with most of these people, I hardly ever talk about diabetes these days. Of course if the need and occasion arises, they are a wonderful, wise and well-informed source of information and support about every aspect of living with diabetes. But above all, we are just friends who chat, laugh and cry together like friends do. Or perhaps more accurately, like families do. Because for me, that is how the GBDOC feels, and I make no apologies if this sounds cheesy in the afterglow of such a fun weekend. We are indeed an extended family, and like any family we sometimes fall out, we sometimes bicker, but in the end we know that blood sugar is thicker than water.

As Sister Sledge put it: We Are Family, and I for one am grateful that I have "got all my sisters, brothers, aunts, uncles, cousins and whoever with me."

This post comes with my thanks and greetings to all these #FacesOfGBDoc both those who were present last weekend and those who were unable to join in. Here they are - an update to this picture will be posted on Twitter when I have added all later additions to this picture: