I developed Type One Diabetes just
over 26 years ago, in December 1997. I have often said that it was a good moment
to join that “club that nobody wants to join” in terms both of my own age and
circumstances (I was aged 40, married with three children, settled in life and
work) and in terms of diabetes management and treatment (beyond the days of
glass syringes, primitive inaccurate blood tests etc.)
Yet even since 1997, things have
got markedly better, with the past decade or so having brought two significant
advances: The first a quantum leap forward in technological support for those
living with the condition; the second the growth of diabetes peer support
communities linked by social media networks.
The advances in diabetes
technology were neatly highlighted by the nice coincidence that my most recent
“diaversary” just before Christmas (19th December, marking 26 years
of the condition) coincided with the final announcement of NICE guidelines
about the use of closed loop technology for those in the UK living with Type
One, the culmination of a remarkably quick process which started with the
arrival of the first mass market non-invasive glucose monitor - the FreeStyle
Libre - ten years earlier. Those of us living with Type One under the care of
the NHS are indeed blessed with a level of support for our condition which is
the envy of the world. The leadership and accessibility of Partha Kar has been
instrumental in making this happen, however much he protests that he is “just
doing his job”
The growth of peer support
fuelled by social media connectivity shows no sign of slowing down, and has
achieved a good deal, albeit that the sheer numbers involved mean that it has
lost its early intimacy and has inevitably led to a degree of empire building
and thinly disguised rivalry between individuals and groups.
These two advances mean that nobody
can deny that here in the UK, people living with Type One are well served by
the healthcare system and by the community of people living with the condition who
are keen to share experiences, expertise and friendship.
There is increasingly a nagging
feeling in my mind that I’m being left behind, a feeling complicated by the
sense that I’m actually perfectly happy to be left behind. What’s going on? It
doesn't quite make sense, so permit me to explain.
Forgive the self-analysis here,
but in general terms, I like to believe that I am fairly adaptable to changing
times. Although I grew up in the pre-digital age, I have embraced that revolution
with appreciation rather than the resentment and bewilderment which I often see
in others of my own age, let alone those older than me. I do not eulogise the
“good old days”, but rather I positively enjoy and greatly appreciate the
comfort and convenience of the world in which I am growing old. I spend way too
much of my life glued to my phone, like the overgrown kid that I am. I am fully
I therefore had no hesitation in
taking up Abbott's groundbreaking FreeStyle Libre at the earliest opportunity,
and in subsequently embracing its evolution into a de facto CGM using my
smartphone rather than the reader. Moreover, I was among those singing the
praises of this device from its earliest days thanks to my early adoption of
the online diabetes community which coalesced from around 2012 onwards. It was
the diabetes community that first alerted me to these advances in technology,
and it remains a source of great pride to me that I played a small but
significant part in the campaign to get this life-changing technology onto the
NHS prescription tariff in 2017.
However, I now find myself being
left behind as others embrace pumping for insulin delivery and closed loop
systems to automate this process to a good extent. I feel a bit like the man
who bought a top-of the range VHS video player in the late 1980s and refused to
embrace DVDs, or the man who bought a stack of DVDs and CDs in the 1990s and now
refuses to subscribe to Spotify or Netflix.
I am, by nature, a creature of
habit with little taste for adventure and no thirst for the unknown. The facts
about me speak for themselves: I’ve been married to the same woman for 40+
years; lived in the same town for 36 years; taught in the same school for 36
years; banked with the same bank since I left university; I’m now driving my 6th
successive Mitsubishi; I’ve been with 02 since it was BT Cellnet, firmly wedded
to Android rather than Apple, and I feel guilty and disloyal whenever I am
eventually persuaded to change energy supplier in search of a cheaper deal. I
am inertia personified in some respects.
Small wonder, then, that I am
perfectly happy with “just” my insulin pens: I know what I like and I like
what I know could have been coined to describe me.
I have therefore watched with
interest rather than envy as the Type One world has gone closed loop crazy.
Social media timelines are filled with posts testifying to the life-changing
effect of what some term an “artificial pancreas”, with screenshots of flat
overnight blood sugar lines or of Strava maps telling the world that its author
has been on a run freed from the need to fret about its effect on sugar levels.
To be honest, these have started to become something of a bore.
And here I sit, armed only with
my FreeStyle Libre and my ageing insulin pens, with a time in range of around
75%, an Hba1c of around 50 and no enduring sense that my life has been ruined
by diabetes. Do I want an insulin pump? Do I want it to be linked to a CGM to
take over the management of my diabetes?
The truthful answer is “I’m not
at all sure I can be bothered”. I’ve got better things to do with my life than
to learn the ins and outs, the tips and tricks of a pump when my own tried and
tested “hit and hope” methodology continues to serve me well. Yes, I get hypos
and hypers, but armed with a Libre I can and do correct with micro doses or
snacks in a manner which works well for a largely home-based retired life. If I
were still working, I’m pretty sure that I might think rather differently.
However I do often wonder why, if
all this automation is supposed to be so liberating, it appears to occupy so
much of peoples’ time and energy. I never see any posts by people - still the
majority - using MDI, and I sense that’s at least in part because many of them,
like me, prefer to just inject and get on with their lives. My strategy for
living with diabetes has always been to keep it in the background where it
So am I opposed to the continued
rollout of technology? Absolutely not. I firmly believe in “each to their own”,
and I am well aware that there are many for whom a more automated approach is a
godsend. And they are NOT all youngsters – I know many PWD of my age and older
who swear by the life-changing benefits of looping.
Will I continue to resist the use
of a pump and an HCL? I don’t know – ask me again every few years!
Do I think there are other
issues, at least as urgent, arguably more, that perhaps should get the same
level of effort, publicity and indeed funding that have driven the “rise of the
I most certainly do.
I’ll pick out three:
Firstly, I'd like to see the
spread of non-invasive glucose monitoring on prescription to those living with
Type Two diabetes. The phrase knowledge is power is often applied
in a healthcare context, and despite the recent progress in linking CGM to
insulin delivery, I still believe that knowing BG levels and their predicted
direction of travel, and knowing what the effects of different foods and levels
of exercise have on blood sugar levels provides for many the key to better
understanding of, and hence better self-management of all types of diabetes.
Secondly, I'd like a reform and
standardisation of the education given to people with diabetes at or soon after
diagnosis. Another over-used cliché springs to mind - “education, education,
education”, and I have a strong sense that there is huge variation on the
availability, timing and delivery of education, and that the DAFNE and DESMOND
models, with their somewhat rigid teachings, have been allowed to dominate to
the exclusion of more streamlined models better suited to this age of busy
lives and flexible working hours.
Thirdly, I would love to see a
real and sustained investment in the understanding and treatment of the
hitherto under-reported psychological aspects of living with such a burdensome
and stigmatising condition. The recent publication of the parliamentary report
into disordered eating among those living with Type One shone a light on this
scandalously neglected issue. This one is close to my heart, as my best friend
is among those affected and among those most engaged in the calls for better
understanding and more integrated care, but it struck me very strongly how many
other names and faces familiar to me from the online communities have been to
some extent living with this debilitating and dangerous add-on to Type One.
So there we are: the outlook for
people with Type One is vastly better today here in the UK than it was
even 25 years ago, let alone a century ago when insulin therapy changed Type
One from a death sentence to a manageable burden. Yet this situation brings its own challenges at a time of ever-increasing demands upon the limited
resources of any healthcare system, the NHS more than any. I hope that we can
continue to roll out pumps and loops to all who need or indeed want them, but
at the same time, I hope that we in the UK will also count our blessings and
make sure that other deserving, and in many cases more urgent, calls on scarce
funds can be met.
I close by reiterating what is
often said, but is so important: Your diabetes, your way. There’s
enough factionalism out there, and this post is absolutely NOT intended to
criticise those who have shown such drive and enthusiasm for the advance of
technology, be they patient advocates or healthcare professionals. These people
have been truly heroic and have achieved unimaginable progress in a remarkably
But we must remember that, just
as in everyday life where not everybody wants a smartphone, a smart TV,
state-of-the art satnav and suchlike, not everyone wants their diabetes to be
managed by technology. How many programmes on your washing machine do you
actually use? How many apps on your smart TV do you completely ignore? And do
you never get irritated by the constant bleeps and warnings, the sheer
information overload, given by modern cars? Technology is wonderful, but can be
too much of a good thing for some.
It's the same with diabetes
technology: an insulin pump with closed loop is not much help if you live with
I am not extreme on this, but I
do hope that other urgent needs of the diabetes community will not be
overlooked or underfunded amidst the scramble for diabetes tech. Despite what
the hashtag says, diabetes tech can
wait - for some of us.
As the song (and my title of this
post) says, Go Your own Way - and I’ll go mine.