JDRF Input Fusion, diabetes technology


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."



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


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