LIVINGLIVING
Jonsel Gourkan
T1D and comedian Jonsel Gourkan sees the
funny side.
new type of technology. This includes the
so-called 'hallelujah brigade', they think
the product is great; they love it. Then
'others say, 'this seems good', and then
will be a few who just say 'no, it's rubbish,
it can't work, there's no point'. Access to
FreeStyle's Libre sensor uptake has been
held back by disbelievers, competitors
and some rather ridiculous criteria that
patients have to achieve in order to quality
for it. This includes what your BMI might
be, or your blood pressure - things that
are not really to do with glucose control,
nothing that the FreeStyle Libre system
can in fact affect."
Kar, who had championed the national
access to FreeStyle Libre (avoiding a
postcode lottery), has noted the fact that
some CCGs have dictated that patients
must do DAFNE course in order to qualify
for Libre, which might mean - in some
cases - waiting nine months before there is
a place available to attend the course. He
says, "We need uniform training across the
country as well as adherence to the access
to recommended technology pathway.
The pathway is the guide. If people qualify
according to the pathway then you work
on a plan for the funding. I believe that
there should be a national procurement
pathway for all pumps and other diabetes
technology, not - as is the case in some
centres - 'we only do this one.'"
Looking ahead
Speaking to all those gathered in the
room, and there was elbow room only,
Kar said, "It's a bit of a shame, but you
have to raise the issues and challenge the
system, challenge the industry too. There
is Closed Loop going on out there, there
is DIY APS, there are algorithms being
developed and regulations being written,
but there is patient power too. You should
know that you have the right to change
your service. You would do that if your
plumber was rubbish and you didn't like
his work. The NHS does fund solutions
such as Dexcom CGM or Medtronic's
pump-and-sensor combination, but it's
not enough."
At the moment CGM is granted for
individual funding requests, not under a
national mandate. Says Kar, "That has
to change." He also asks, "Why is there
four-year contract on pumps when other
technological improvements like closed
loop with CGM might come along a
month after your pump change?"
His last bit of advice was to
encouraging HCPs and people with
diabetes to talk about the concept of Time
in Range (TIR) as he says that this 'helps
the conversation, it is no longer about one
average number across three months, it
says that it's OK to be outside of range
sometimes. Often chasing a number
because it is too high can make control
worse, not better, as you over bolus at the
end up bouncing up and down."
And as a final point, against some
questions about whether diabetes tech
was work it, and to round off the talk, Kar
said simply, "If one of my kids had Type I
diabetes I would know what to access,
what maybe the best option. At present?
Not all have that opportunity- and that has
to change."
www.nhs.uk/type-1-diabetes
www.nhssugardoc.blogspot.com
Jonsel Gourkan is a British-Turkish
actor and comic. He was born in KingstonUpon-Thames, has
played professional
football in Turkey and performed in British
band Word on the Street. The band
supported many well-known UK pop acts
such as 5ive, Westlife and 911 and played
major arenas across the UK, including
Wembley. When the band disbanded,
Gourkan had a short solo career with
one of his singles, 21st Century Man,
appearing on the US version of Queer as
Folk.In his youth, Gourkan played a few
games for the under-18 Birmingham City
team, so Birmingham City Football Club
was an apt location for him to stand up
and talk at this year's Input: Fusion event.
Gourkhan has had Type I diabetes
for 29 years and says he feels like a
'veteran' and that within that time he
has encountered prejudice as well as
questions about his condition and had
some tricky diabetes situations to deal
with. He recalls, "Mum picked up on