Friday, 8 June 2018

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.

Sunday, 20 May 2018

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 15th century, and translated by Richard Littledale in the 19th 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:

Tuesday, 1 May 2018

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 27th 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:

Thursday, 29 March 2018

My Song is Love Unknown: What's good about Good Friday?

This is an update of a post from three years ago. Unlike many bloggers, I like to write about a variety of topics which interest me, but in so doing, I am well aware that some will be indifferent or even hostile to some topics. So if you object to religion, stop reading now. However, if you can bear with me, you might just come to see that being religious doesn’t mean you’re opinionated, self-righteous, and in-your-face, or that you necessarily have to believe in implausible miracles.

I don't often write about religion on my blog, and I certainly don’t wish to bore people who are not interested, but if I can’t write about religion at the most important times of the Christian year, when can I? Today, Good Friday, commemorates what was surely one of the most significant events in human history and yet its meaning and significance are increasingly forgotten, at least in our increasingly secular country.

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

If you are a follower of Jesus Christ, the events of Holy Week and Easter are pretty hard to deal with. The day on which the hero of our belief system was cruelly and violently put to death by a tyrannical occupying power is called, in English at least, “Good”. As if that’s not bad enough, Christians are then supposed to believe that he did it “for their sake” and that he then rose from the dead, thereby defying the one certainty in life: death. According to many, that’s what’s “good” about Good Friday – the idea that Jesus “died to make us good”, to quote C F Alexander’s wonderful hymn, “There is a Green Hill far Away”.

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

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

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

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

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

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

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

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

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

Sunday, 18 March 2018

Reflections of My Life: Growing old with Type One Diabetes

Reflections of My Life. This sounds a bit personal and heavy, but it doesn’t signify any particular change of mind-set.

It’s just that I’ve perhaps had more time for thinking in recent months, and together with a few unrelated events and changes in my life, it’s led to a blog post forming in my mind. As always, I’ve given it a title from a song, and this one is a real favourite of mine. It’s a track by Marmalade, a somewhat under-rated Scottish band who spanned the late 60s into early 70s with a series of songs that saw them grow from beginnings in fairly bland 60s “pop” into a versatile, musically and lyrically literate outfit. This one is a real gem from early 1970, a song as wistfully reflective as the title suggests.

So what’s this post all about? Well, I guess it’s about growing old, and in particular growing old with diabetes. And why now?

Well, I’ve been doing a lot of digging recently.

There’s been a lot of literal digging, as we have just moved into a new home with a very large, undeveloped garden. I’ve been out in all weathers, patiently and methodically creating two long, undulating borders along the sides of what was a rectangular lawn. It’s the sort of task I love. Easily defined, constructive and with a visible and measurable outcome, it gives me fresh air, exercise, stable blood sugar and lots of thinking time. I have also been delighted by the extent to which people on twitter have enjoyed following the progress of my work. Simple pleasures.

My Growing Border
Then there’s been some metaphorical digging as I make similarly slow but equally steady and rewarding progress indoors, uncovering the full extent of my family, past and present. I’ve been building a family tree on Ancestry for several years now, tracing back my own and my wife’s forebears, but a particular meet-up with cousins from two generations on my father’s side has led me to propose and organise a gathering to celebrate the centenary of my paternal grandparents’ wedding, in April 2019. This has re-connected me with 8 first cousins with whom I had been in minimal contact, and to hear about their lives and their families has been a great pleasure and also a reminder that we are all growing older together. I am, with the help of my cousins, planning quite a party.

So I was thinking about all this whilst digging away at my lawn, when at some point in recent days I saw this post from the wonderful @LisWarren, one of the many great friends that I’ve made in recent years though the online diabetes community:

With her 50+ years of living with Type One and tireless advocacy work, Lis is, along with @PeteDaviesType1 and @apatrickmooney a shining reminder to all of us that diabetes is no barrier to a long and healthy life, but she is right to draw attention to the fact that the very success of treatment and care for Type One diabetes since the discovery of insulin therapy in 1924 inevitably leads to there being a growing cohort of older people with Type One. The discredited epithet “juvenile” for Type One still persists enough to sometimes give the impression that it is a young peoples’ condition, which it of course isn’t. And therein lies a challenge for all of us who live with diabetes. We’re very good at self-care, but how good will be at it in old age?

My own “reflections of my life” in recent months inevitably include an awareness of the ageing process, and whilst I am not and never have been, one to dwell on doom and gloom, I nevertheless cannot help but wonder what it will be like to live with Type One at an advanced age.

My own parents both enjoyed good physical health and led active lives well into old age, but if one fear does haunt me it is that of succumbing to the Alzheimer’s Disease which turned my late mother, once a lively, witty and energetic schoolteacher, into first a grotesque caricature of her former self and then an unrecognisable and unrecognising shell of a human being, whose death at 85 in 2013 was a merciful release both for her and her family. I was not a blogger at the time of her decline and death, but it is a story that I may tell on here one day: to end up as utterly helpless and unaware in the final years of life as she did, and to become totally dependent upon others for diabetes management is a very sobering thought for me.

As I wrote in this recent post about technology and diabetes, I accept that I am too old to have any prospect of being cured of Type One, and I also accept that whilst the health of older people is much better than it was even in the recent past, I will over the years that I have left become weaker, frailer, more forgetful, less capable and so more dependent upon others.

But let this not end on a gloomy note. I am very well thank you, busy creating a garden, building a family tree, collecting and posting photos for daft #GBDOC collages and organising events for my family and others. And many of my friends, especially those in the diabetes community, are a lot younger than me. So I am a long way, I hope, from being “put out to grass”.

And at the risk of repeating the conclusion from that recent post, I have great faith in technology to help me both with my life in general and with diabetes management. I feel blessed to be young enough to have embraced the revolutionary changes in ICT that have swept through our lives over the past couple of decades. It is easy to think of smartphone addiction, social media and the like as a young peoples’ thing, but these gadgets and gizmos which we all love so much will be a massive boon in old age that my parents’ generation have in many cases missed out on. I imagine the care homes of the distant future being full of old folk, still sitting around on chairs as they do today, but all clutching a tablet or smartphone and fully engaged with and enjoying stuff like silly videos on You Tube, gifs and viral posts on social media. And hopefully, they will be a lot happier for it. Technology and old age certainly do mix.

For those with diabetes, is it too much to ask that access to technology - pumps, CGMs, closed loops and the like should perhaps be regarded less as “just for younger PWD” and more as a priority for those of more advanced years.

Now, back to the digging….

Friday, 2 March 2018

I Will Survive - but I'd like a bit of help, please.

Cure for Type One Diabetes? “If there’s a cure for this, I don’t want it” sang Diana Ross back in 1976.

Well of course, if someone offered any of us living with Type One Diabetes a cure that was permanent and free from nastier long-term side effects, we’d grab it with both hands. There’s a running joke among people with Type One that a cure is “ten years away” - I remember hearing this when I was diagnosed back in 1997 - and for a while I kidded myself that it might be true. I remember my late mother saying she would gladly use her pension pot to help fund any treatment that would cure me, and whilst I politely thanked her, I soon realised that her life savings were not in any danger.

“Ten years away” isn’t true, never was and possibly never will be. I’m fully reconciled to seeing out my time on this earth in the company of my unwanted friend T1D. I hope I’ve got thirty odd years left, and it would be great to make it to 50 years, especially having been diagnosed as an adult. That’s my life goal, but it will require me to see my 90th birthday and a little more for that to happen.

But if that sounds negative and defeatist, it isn’t. It’s just realistic, and I have to say that I had a “light bulb moment” after attending the wonderful Type One - Rise of the Machines event in London last Saturday, 24th February 2018. 

Quick shout out to Partha Kar for making it happen, all the speakers, and Ben Moody and the team at TechUK for hosting. My light bulb moment is nothing particularly new, but rather just a clarity of focus about the way forward for managing Type One. Let me explain:

Rise of the Machines was all about the use of technology in managing - not defeating - Type One Diabetes. It was an inspirational day: we heard from some of the medical technology companies about their work in developing the gadgets and gizmos such as insulin pumps, CGMs and Flash Glucose monitors which have done much to improve the lives of those lucky enough to have access to them, and they deserve our applause and recognition for the work that they have done and continue to do to make our lives better. I am lucky to live in the era in which I do, and in the country in which I do. Then we heard from the big two charities, Diabetes UK and JDRF, who do so much to raise the funds required to fund technical and medical developments.

But we also heard from some of the stars of the world of #WeAreNotWaiting - those highly motivated people with diabetes, or parents of children with diabetes, who have used their skills in ICT, especially coding, to take what the medical technology companies have done and move it onwards in a way and at a speed that could not be achieved in the - rightly - cautious and regulated world of corporate medical technology.

Whilst the work of the #WeAreNotWaiting people on closed loops, artificial pancreases and the like is not for me and unlikely to be (it depends as a starting point on the use of insulin pump therapy, for which I am unlikely to be eligible in the foreseeable future), it shows what can be done and points the way to a longer-term future in which Type One Diabetes will be artificially managed to the extent that it can be a mere inconvenience rather than the full-time occupation that it all too often seems to be.

And therein lies the crux of the matter, and there are encouraging signs everywhere that people with diabetes, healthcare professionals and the scientific research community are starting to recognise it.

Diabetes is a condition, not a disease. Type One will not be “cured” in the foreseeable future. The best hope for those of us living with it is therefore to have access to the best possible assistance in living with it, and for that to happen, technology must increasingly be seen as an essential, rather than some kind of desirable add-on.

A condition not a disease: most diseases require drugs, either to reverse and cure them, or to make them bearable and prolong life. However, a condition, especially one like Type One Diabetes which is not degenerative, requires assistance with self-care to ensure that those living with it can do all that they would do without the condition, and not become a burden on an overstretched healthcare system.

In this sense (and I know that to say so is controversial) Type One Diabetes is perhaps a disability, and people with other disabilities, however minor, benefit from an increasing range of technological solutions to make their lives liveable and as normal as possible. Some examples are so common that they are overlooked: those with less than perfect vision wear glasses; those with tooth damage or decay get fillings and crowns; those with hearing loss use hearing aids; those with minor heart problems use a pacemaker; those who have lost limbs use prosthetics or wheelchairs. The list is endless.

So why the apparent unwillingness to use technology to help those with Type One Diabetes? There is at present great frustration in the Type One community at the postcode lottery of access to FreeStyleLibre flash glucose monitoring, a high-tech but relatively low-cost innovation which allows people with diabetes to carry out the all-important monitoring of their blood sugar levels in a manner which is convenient, non-invasive and infinitely more informative than finger-prick testing. There is suspicion and even hostility towards it from some, even within the healthcare profession, yet people with diabetes and many of those who care for them are overwhelmingly convinced of its short and long term benefits. The CCGs who are resisting accepting it to their approved listings for NHS availability cite its cost, yet appear focused on just the headline up-front cost of around £70 per month. This despite the fact that it is already widely accepted that this cost is broadly comparable to that of an adequate supply of finger prick tests, without even considering the longer-term cost benefits of improved control.

However more significantly, I was struck by the views of a consultant who spoke at the Rise of the Machines event. He pointed out that there are many drugs in very widespread use whose cost is far greater. For example some treatments for Type Two Diabetes (a far more common condition) such as GLP-1 Agonists cost £68 -78 per month. This is a minor cost when compared with other drugs such as Infliximab which is used to treat auto-immune conditions such as Arthritis & Crohn's. Patients typically receive infusions every 8 weeks, costing £1500-2000 dependant on dose.

The consultant who spoke argued that FreeStyleLibre sensors at £70 per patient per month would have been accepted readily and with minimal dissent if it were a drug. The suspicion and even hostility comes from the fact of it being a piece of high-tech kit and as such points to the need for a change of mind-set.

I for one very much hope that we are on the cusp of just such a change. Technology is everywhere, and devices of a level of sophistication that would have been unimaginable even twenty years ago are now part of all that we do. Smartphones and satnavs for example, have taken over how we communicate and travel, yet would have appeared to be expensive luxuries in the recent past.

Those who regulate the access of people with Type One Diabetes need to realise that for most of us, we need gadgets as well as drugs. The “drug” for Type One is well-established, fully effective and aside from minor potential developments such as smart insulin, what we use today is fine. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive yet threatens our day-to-day well-being 24 hours a day, every day. We survive and flourish best when helped by machines which can help us to monitor and react to the insulin which keeps us alive.

With the help of technology and machines, accessible to the many and not just the few, there is every reason for me to believe not only that with Diabetes I Will Survive, but that I and my many friends with Type One will live long and prosper. And we'll cost the NHS a whole lot less in the long run.


Thursday, 8 February 2018

Do Anything You Wanna Do: DAFNE and me

Well, I finally got to meet DAFNE! After 20 years of living with Type One Diabetes, I have, better late than never, received the “education” to which we are all entitled to help us live with a condition which demands so much of us in terms of self-care, self-monitoring and self-treatment. Just in case you don't know, DAFNE stands for Dose Adjustment for Normal Eating, and is the recognised education course for people with Type One Diabetes. I'm now a DAFNE graduate, and I've got the certificate to prove it:-

My DAFNE Certificate 
Those readers who follow me on Twitter, or who have read my previous blog posts, will perhaps know that I had to fight quite hard to be allowed onto a DAFNE course. Fourteen years after diagnosis, I was discharged from hospital care back in 2011 because of my “good control” and lack of complications, and my D-care had been reduced to an annual check-up with my GP. It was only when I started associating with other Type Ones, thanks to the GBDOC, that I came to realise how minimal my input from the health service had become, and with retirement from work and a twenty year diaversary occurring at around the same time, I asked to attend a DAFNE course, only to be told I was ineligible because I was not under hospital care.

So I referred myself back to the hospital, only to be told there that my HbA1c was “too good” and that I “didn’t need” a DAFNE course. I politely insisted, citing a wish to be better informed in my judgements of insulin dose, rather than relying on semi-educated guesswork, and eventually found myself at the start of 2018 on a course. It was the 5 x 1 format, rather than a full five day week - apparently more popular due to peoples’ work commitments.

So how was it?

Well, most importantly there have been many positives:

I have come home every week like a new boy at school, clutching a shiny ring binder increasingly full of paper, and the information both on paper and presented during the course is detailed and useful. I have achieved my basic aim, namely to learn more about the complex relationship between food, insulin and activity. The pocket-sized Carbohydrate Portion List alone is a wonderful thing, and I have been genuinely surprised and enlightened to learn of the carb content of some foods which are a regular part of my diet. Some puzzling highs and lows over the years now make much more sense!

The presenters, a dietitian and DSN, have been thorough, attentive and caring in their approach to the diverse group of participants on my course, and display detailed knowledge of both diabetes and the principles of DAFNE approach to its management. I cannot fault them for their knowledge of their material and their belief in it.

The opportunity to devote time and mental space to my condition has been most welcome and useful. I developed Type One at a time in my life when I was extremely busy both professionally and personally, and so I have to say that I didn’t really give diabetes the attention it warranted until quite recently. I just wanted to carry on as normal, and indeed I was pretty successful in so doing. But looking back, I can see moments when the cracks were starting to show, and I should perhaps have given the condition a little more of my time. So being forced to “study” diabetes, to note food intake and injection doses in minute detail and to discuss outcomes has been good for me. Nobody has ever mastered diabetes.

My colleagues on the course have proved to be very good company, as fellow PWD invariably are. Prior to this course, I had never met any fellow Type Ones in my local area other than pupils at my school, so it has been interesting to meet a small group who share the condition. As always, it serves as a reminder of the completely random nature of Type One to meet people who are a diverse group of individuals with different backgrounds, lifestyles, tastes and experiences, yet with such a big thing in common. We have had many laughs together, as well as sharing in our difficulties.

What of the negatives?

Well, I am loathe to criticise, not least having had to fight to get on the course. And in overall terms I feel better-informed and therefore more confident for having done the course. However, in all areas of life, I am not a fan of absolute rules and principles. I prefer guidelines, and my experience of diabetes has taught me that it is a condition where absolutes seldom work.

So the somewhat evangelistic application of “DAFNE principles” that pervades every aspect of the course does not sit comfortably with me. To be told as a rule, as if it is a matter of life and death, not to pre-bolus, not to test after meals, to change my lancet and to wash my hands before every blood test, to apply mathematical formulae to doses and corrections seems to me to run counter to the very nature of diabetes. It’s a mercurial condition which defies logic a lot of the time. The same food, the same activity on two apparently similar days can produce startlingly different outcomes for no good reason. The same BG reading can feel very different to different people. The same insulin works for some and not for others. My favourite acronym from the online community is YDMV: Your Diabetes May Vary. How very true, yet DAFNE somehow appears to suggest otherwise.

In personal terms, I was more than a little dismayed to have a radical change of dose imposed on me at the start of the course, a massive reduction in insulin intake (both long and short acting) compared to that which had served me well for many years and given me an Hba1c of 46 (6.4). It was inevitable that such a striking reduction would lead to uncomfortable highs, and it did, such that over the five weeks, we gradually returned to the previous levels. Having said that, an adjustment to the balance between basal and bolus has been the most useful and significant outcome for me, but that could have been achieved by less dramatic changes, as to reduce both at the same time didn’t give the opportunity for true evaluation of cause and effect. I intend to persist with experiments with these levels.

Now I fully recognise and understand the difficulty of delivering a course to participants of varying degrees of knowledge and experience of diabetes, and I repeat my admiration and respect for those who have researched, devised and present such a valuable body of knowledge to patients who need it. I also realise and accept that rules and principles have to err on the side of safety, not least in our risk-averse age and culture.

However, I do wonder whether a limited dose of peer input might be helpful, to both the course presenters and participants alike. My own experience of diabetes has been that in 20 years, all the most useful hints, tips and knowledge has come in the past few years thanks to the GBDOC. Perhaps some of that expertise and experience could be brought to education courses such as DAFNE. I would willingly offer my time to meet fellow PWD, provide a little real-life experience and above all assure them that it is possible to live well with Type One. I would love to have met my 60 year old self when I was newly diagnosed at 40.

In more general terms, I wonder whether some thought should be given to the timing, nature and delivery of diabetes education. What is the best timing for effective education following diagnosis? Is it the best use of scarce resources to run five day courses delivered by two busy HCPs? I wonder whether two or more shorter courses might be more effective. Perhaps one 6 - 12 months after diagnosis then another after around 5 years. These could be as little as one day in duration, with additional content available in print/online. And could they be delivered by HCPs with volunteer peer support?

And in the meantime, I’ll watch, listen and observe, but when it comes to self-management, I’ll be as stroppy as Eddie and the Hot Rods were in this classic of rebellion back in 1977: 

And here’s my DAFNE playlist:

Disclaimer: I am very aware that I am not an expert, and have no qualifications other than experience and common sense. Please be aware that what works for me in managing my diabetes may not work for you. 

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” 😂😂...