LIVINGLIVING
ACCIDENTAL ADVOCATE
Having had T1D for 25 years Aldred says he is not a patient
representative nor an expert patient (other than for his own diabetes).
He calls himself an 'accidental advocate'. Here he looks back at what
2019 involved for him in terms of travel, tech and giving talks.
P
ersonally 2019 has
been a good year for
me. Well, except for the
fact that I developed
a second foot ulcer,
though that's been clear for the last six
months. That's a whole other story. Oh,
and my son was diagnosed as also having
T1D too. That wasn't exactly one of my
hopes for the New Year when I welcomed
in 2019. But the family is coping with that.
This year saw some technology
changes for me. The demise of Lifescan
and its Animas insulin pump the year
before meant I had to change my insulin
pump and I started on the Tandem t:slim
pump in early 2018. This year brought
new software for the pump called Basal
IQ which, when used with a Dexcom
CGM sensor, meant the pump controlled
my basal rate on its own, stopping insulin
delivery if I was going low. I was sure that
just cutting off my basal when low would
not make much difference to me, but
I was wrong - so, so wrong! It worked
really well. I was impressed.
However, lows are not my main issue,
highs are. The next software update will
be to Control IQ, which will mean the
pump can add in insulin automatically
based on sensor readings when I am too
high. However, about half-way through
this year, as that was still a way off, l
decided to try a DIY system and started
'looping'. It's been very successful for me
and I plan to stay on this until Control IQ
becomes available in the UK later in 2020.
Being able to use these automated
systems is a matter of considerable
privilege. Diabetes tech of this level is
only available to a tiny minority of those
of us living with the condition. This is why
I have been pleased to see progress on
the availability of smart pens this year. This
has the potential to benefit a huge amount
of people with diabetes who manage their
diabetes with insulin, be they Type 1 or
Type 2.
TALK IT OUT
The majority of my year has been
advocating for change in the way we
talk about diabetes and its related
complications. Along with Renza
Scibilia I have spoken at many
conferences and events on the
subjects of #LanguageMatters and
#TalkAboutComplications and the
importance of removing the stigma that
can sometimes come with a diagnosis of
diabetes. We had an article published in
the British Medical Journal and have both
written extensively on this subject.
In May we visited Manila to run an
advocacy workshop for some truly
amazing young people. Hearing the
issues they have with some only being
able to afford one test strip per day was
truly humbling.