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 to follow "rules", as if it is a matter of life and death, such as do not pre-bolus, do not test after meals, change your lancet every time, wash your hands before every blood test, and to apply rigid 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

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