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!

DAFNE Swag
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. 

Wednesday, 7 February 2018

Kiss from a Rose

This is a brief post, the first of two that I shall be publishing in the next two days. 

Tomorrow’s is about my experience of a DAFNE course, and as such it is typical of the sort of stuff that I and many others post because we have diabetes. I hope it is at least interesting to others and potentially helpful to them. But in the end, it’s self-indulgent and trivial.

However, this one is anything but. I’m writing this post because of a campaign which has been drawn to our attention by one Chris Aldred, better known to the dia-world as the Grumpy Pumper

For this, Chris deserves endless credit: beneath that grumpy persona beats a heart of pure gold, as we all know, and he has done us all a favour by reminding us just how lucky we are, or more importantly, how unlucky others are. And to do something about it.

It’s about the Spare a Rose Campaign, which aims to draw attention to the grotesque inequalities that exist as regards diabetes care and treatment in different countries. Quite simply, this should remind all of us in the UK that however badly done by we may feel, our life with diabetes is – excuse the pun – a bed of roses compared to many other parts of the world.


We were reminded in the news only yesterday by the clergyman father of Lauri Love, the English computer hacker threatened with extradition to the USA for allegedly stealing details from the FBI, that "To be born English is to win first prize in the lottery of life" This is variation of a quotation originally attributed to Cecil Rhodes, yet despite that provenance from a man who represents much that is wrong about our past, it is not a bad thought to carry in the context of healthcare.

We are the lucky ones.

Take this as an example: A few minutes ago, I received a delivery of FreeStyle Libre sensors, brought to my door by a courier, and paid for by me. I had tracked their arrival on an app on my phone, and immediately announced it to the world of Twitter, because there has been an issue regarding delays in sensor supplies to UK customers, caused, it is alleged, by the spike in demand caused by their availability on the NHS. It’s the sort of thing we all tend to do on social media. We moan because we can.

How pathetic am I, that I have been bothered about a delay – only a delay – in the availability of a device which is, yes, of great value to my diabetes management, but essentially a luxury in a worldwide context.

Elsewhere in the world, it is a shortage, or unavailability of, insulin which is the issue. In the USA, it is the extortionate price of insulin which is the issue. And indeed less than a hundred years ago, insulin therapy had yet to be invented. Successful treatment of Type One Diabetes started within living memory, and in many parts of the world is still not a reality.

So let’s just remember that next time we moan about some frankly trivial aspect of our care and treatment by the NHS. We are the lucky ones. And before anyone accuses me of finger pointing, may I remind myself that whenever you point a finger at someone, there are three fingers pointing back.


Let’s all join our man Grumps and donate the cost of a Valentine’s rose – or more if we can. Let’s all Spare a Rose. The website is here:-


Chris will be leading a #gbdoc tweetchat on the topic tonight, Wednesday 7 February 2018 at 21:00 GMT from the @GBDocTChost account. Please join in if you can, and let's give some less fortunate than ourselves a metaphorical Kiss from a Rose

Thursday, 4 January 2018

Gold

Happy Christmas! It’s still OK to say that. I’m writing this on January 4th 2018, so by my reckoning it’s the 11th day of Christmas, and those eleven pipers are busy piping as I write. My decorations are still up, my tree is still lit and will remain so until Epiphany, which is this Saturday, January 6th.


As it happens, we are this year hosting an Epiphany Party at my home on Friday evening - twelfth night - as a fundraiser for a community organisation of which I am Chairman (my town’s Twinning Association, which overseas our flourishing links with similar partner towns in France and Germany.) Our activities are entirely self-funded, so we hold fundraising events that enable us to offer hospitality to visitors from our partner towns. We did the same a year ago, and it was so popular that people asked for another one, and we were happy to oblige.

Our King Cakes at the 2017 Epiphany Party
However, I would still be celebrating Epiphany even without this event, and it seems to me a crying shame that we neglect this opportunity to prolong the fun of Christmas into January – as many other countries, not least our European neighbours do.

Epiphany commemorates the arrival to visit the baby Jesus of the Wise Men (often referred to as the Three Kings, even though there is no reference in the Bible to there being three of them, or to their being Kings). But of course the word Epiphany also carries a more general, secular meaning of "a moment of sudden and great revelation or realisation". 

The story of the Wise Men bringing gifts - Gold, Frankincense and Myrrh - lies behind the tradition of exchanging presents at Christmas. In my house, in a tradition inherited from my late parents, we mark the last day of Christmas by exchanging one last present (a small symbolic gift), and take the tree down, but we have also adopted the French tradition of the “Galette des Rois”, whereby a cake is served, containing a charm, the recipient of which is named “King” for the day and is crowned with a paper crown and allowed to order the rest of the family around for a bit. When our children were little, we used to ensure that one of them got the charm, thereby giving them the right to turn the tables for a bit by requiring us to do the washing up or some other task. Further details about how Epiphany is celebrated in other countries are available here:-


I find it sad and surprising that the retail and commercial trade doesn’t make any attempt to recognise Epiphany here in the UK. Shops jump straight from Christmas to Easter, with Creme eggs on sale from Boxing Day onwards, whilst card shops jump straight from Christmas to Valentine’s Day. The retail trade seems only too keen to seize on somewhat contrived and rootless dates like Black Friday, yet misses a trick in not acknowledging festivals like Epiphany, St Nicholas Day (December 6th) or Candlemas Day (February 2nd). I wrote about Candlemas in a previous post here.

This year (2018), Epiphany falls on a Saturday, giving the perfect opportunity for one final celebration of Christmas on a Friday evening, a nice end to the dreariness of back-to-work week at the start of January. Why not make a Galette des Rois and see who gets to be “King” for the day? And enjoy another Christmas drink while you’re at it. There are numerous recipes for the galette on the internet, such as this one:-


But you could always just make - or buy - any sort of cake according to tastes.

And as for so many festivals, there’s a wealth of hidden musical treasure to accompany the day. Here’s my selection of traditional sacred epiphany hymns and music seasoned with some secular songs with Epiphany meaning or lyrics. Who needs an excuse to listen to Spandau Ballet's iconic 80s classic Gold, a fitting title for this post?



Happy Epiphany!

Friday, 15 December 2017

I'll be There for You

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here's to the next 20 years. 

Friday, 27 October 2017

Follow you, Follow me: role models and ivory towers

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, 3 October 2017

Birmingham Blues

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

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


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

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

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

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


Lis, Pippa and Tim - diabetes bloggers all

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

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

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


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

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

Neil Harris of Abbott talking about developments with the FreeStyleLibre

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

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

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

I would say two things:

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

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

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

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

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

Post-Script:

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

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


 


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

Tuesday, 12 September 2017

Flashdance - What a Feeling

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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...