LIVINGLIVING
Implantables are here. At least, there's a selection of them being
given long-term trials, so they will be coming our way soon. We look
at these, as well as updates on other applications.
IMPLANTABLES,
APPS AND OTHER
HIGH-TECH KIT
continued over
I
NPUT has been around fornearly
20 years, and was focussed at
first on access to INsulin PUmp
Therapy, which is how it got its
name. As times have changed
so has INPUT -- it's not just about pumps
any more -- many questions now come
their way about how to get funding for
continuous glucose monitoring (CGM),
enough blood testing strips or sensor
augmented pumps.
The chief executive, Lesley Jordan,
says, "Researchers and manufacturers
are working towards a closed loop
solution which involves a pump being
run automatically in response to sensor
readings. It is 12 years since NICE first
appraised insulin pump therapy and we
still don't have anywhere near the number
of pump users that NICE expected.
Clinics and commissioners need to catch
up, otherwise they won't be suitably
experienced in pumps and CGM when
the closed loop becomes available. The
new NICE guidelines NG17 and NG18
are really great news. They basically allow
the NHS to provide CGM, although the
funders are under no obligation to do so,
unlike with insulin pumps."
INPUT, together with Diabetes
UK, JDRF, clinical champions and
NHS England, is currently working to
sort out the details of funding CGM.
Jordan explains, "INPUT does not
support petitions to government about
CGM funding, because it's NICE that
recommends on what drugs, devices
and treatments the NHS should spend
taxpayers' money. NICE only gives
guidance or makes decisions based on
robust evidence in the form of research.
'Popular demand' doesn't make any
difference, and MPs can't tell NICE what
to approve. If we push NICE to examine
CGM before we have a rock-solid body of
evidence, they will dismiss it as clinically
ineffective and too costly, and are unlikely
to reconsider for a further five years."
The long view
Jordan herself has Type 1 diabetes and
was diagnosed at the age of two. Still
a couple of years away from being
awarded her Nabarro medal (for living with
diabetes for 50 years), she did a skydive
in September 2014 to raise funds and is
planning on doing it again in August this
year to mark her 50th birthday.
She says, "My clinic suggested an
insulin pump in 2002; at that time I had to
buy it myself then show the improvement
in my control and apply for funding. I was
lucky to be able to afford it. When the first
NICE guidelines came out a few months
later I got funding as I met the criteria.
It was actually quite easy for me. At the
time I was part of an email support group
and could see that people were having
problems getting pumps."
In 1998, John Davis had started a
local support group for pump users in and
around Bournemouth. He was featured
in an issue of Diabetes UK's Balance
magazine, and his phone number was
given at the end of the article. After
publication he said that the phone did not
stop ringing. There were two Johns - John
Davis and John Neale - and they decided
that John Neale would run the email
support group IP-UK and John Davis
would handle phonecalls and letters, and
this grew into INPUT. John retired from
INPUT in 2011 and was awarded the
MBE in 2012 for his services to people
with diabetes.
Jordan continues, "I contacted John
Davis to ask how I could help people
get access to pumps, he asked me to
help organise a local roadshow, and so
I started as an INPUT volunteer in 2005.