Input
Newsletter
input Parents Support Network
Issue No.4
Not so nice
aftermath of nice
publication
Look What
I’ve Got!
Following publication of
the much awaited NICE
recommendations for the
use
of
continuous
subcutaneous
infusion
pumps for diabetes, and
the welcomed result of
the therapy being available
on the NHS, subject to
their guidelines, the
numbers of people with
diabetes
starting
on
pumps appears to have
dropped to zero!
What has happened ?
Summer 2003
The local children
and adolescents with
diabetes in County
Durham have been
asking for pumps,
and laid on a
presentation for their
local NHS Trust and
PCTs, at which
funding for pumps
for local local
youngsters was
agreed. However,
nothing happened.
Brandon
So now Bill Lamb is
planning to run a
sponsored 500 miles
to raise the money
himself for his
patients to get
pumps. Wow!
5 year old
Mustafa’s
Brandon has been happily pumping for over a year now, a veteran at just 5 years old,
mum
from
he has said goodbye to injections, his old nursery school, and is now in the infants.
Halifax
has
Oh, and by the way, many congratulations to mum and dad, Levine and
just received,
Nick, who are getting married this summer in an exotic location !
the good news
that Mustafa is
shows it
to be funded at last, and
What a consultant!
as it is.
he is happily settled on
If you would like to
his pump, but there are
Run for it, Bill
sponsor Bill or want
still other children who
Bill Lamb,
to know more, look
are on pumps and despite
consultant
on
the
nice
diabetologist
at
recommendations,
not
www.run500miles.com
Bishop Auckland
being funded, or being
denied access to pumps,
hospital, to run
despite poor glycaemic
500 miles to
Carbohydrate
control. Why?
provide pumps for
Most of the articles written
here are personal opinions or
experiences and should not be
used instead of obtaining
appropriate medical advice
children
Counting Book
by Jo Sutton –
Correction
1
Sorry to all of you
who wished to buy
this book, we have
since discovered it
can only be
purchased by users
of Disetronic pumps
and equipment.
However, for those
of you with
Medtronic pumps,
they also do a
carbohydrate
counting book and
you can request one
by telephoning
Yolande on 01923
205167
Book Review
Dr.Berstein’s
Diabetes
Solution by
Richard K
Bernstein M.D.
Is a book that I
just could not
put down until I
had read it all.
It is about diet
and its effects
on the diabetic
body systems,
and it is the total
opposite of
everything we
were ever told
about dietary
advice for
diabetes. It
advises having a
high protein, low
carbohydrate
diet, something
that has worked
for the author,
himself diabetic,
personally over
the past 50
years.
My first reaction
was, ‘no way, this
can’t be right’,
but having read
his experiences
feel there may
be times when
this approach
may help, such as
for those who
have been unable
to get anywhere
near reasonable
glycaemic
control, and
possibly those
who are type 2
and exercise.
It is certainly a
book to make you
think and
challenge your
diet beliefs, and
for some,
possibly who are
not on pumps, it
may be an
opportunity to
try another
approach to diet
that may work
for them.
Deborah Beskine.
Medtronics
new Paradigm
pump
Is now out and in
use by some of you –
what are your first
reactions and
thoughts ? please
let us know.
01590 677911
Variable delivery
rates for low
basal rates.
On another note,
for those with
younger children on
low basal rates, we
have heard there
may be a problem
with a variable
delivery of these
low levels of insulin,
possibly only on one
2
type of pump. If you
think this may
affect your child,
please ring John or
Debbie on 01590
677911/01462
626695 as we are
collecting
information.
School Issues
A new American
publication
containing the
‘ultimate
diabetes
resource’ for
schools has just
come out and is
available to
download free
from the
internet on
http://americandiabete
sassn.org/GoNow/a1636
6a78388a106403313a17
Diabetes Uk
also do a school
information pack that
you can obtain by
calling them on 0207
424 1030.
School and
Public Exams
If your child is
at secondary
school, do you
know if the
school has an
exam policy in
place for
adolescents with
diabetes?
Are they allowed
to carry out
blood tests
before and
during the exam?
If they are high
or low, does the
exam clock stop
until their blood
sugar has
recovered to a
normal level, and
then
recommence? As
it may take 45
minutes for a
blood sugar to
adjust, it is
worth ensuring
the school has
such a policy in
place.
For a copy of
Chris Aspeys
report on how
blood sugars can
affect
adolescents and
exams, email
Debbie on
Dceased@hotmail.com
Shortage of
Childrens’
Diabetes
Nurses
There appears to
be a shortage of
diabetes
specialist nurses
for children at
present,
especially those
with pump
knowledge. Or is
it something to
do with what the
hospitals are
expecting the
nurses to do as
well as their
specialist field ?
If you have a
good childrens
diabetes nurse,
make sure you
value him or her!
It’s hard to deal
with emergencies
and questions
about diabetes
and the pump
when there is no
3
–one to ask or
‘phone you back!
Highlight on
FATS
We are always being
told that a low fat diet
is a healthy diet, so
what is fat ?
We eat fat in our
food; it is a nutrient
needed by the body,
but not in large
quantities; it can be
either saturated (such
as butter) or
unsaturated fatty acid,
and the unsaturated
fatty acid can be
monounsaturated
(such as in olive oil,
avocado pears and
rapeseed oil), or
polyunsaturated (such
as in sunflower, soya
and fish oils).
Some soft margarine
contains trans- fatty
acids. These are
unsaturated fats that
have been converted
to saturated fats
during processing.
Excess carbohydrate
that is eaten and not
required by the body
for energy, can be
converted into fat for
storage in the body,
and it is for this reason
Dr.Bernstein, in his
book, recommends
a low carbohydrate
diet. It is also why a
high HbA1c is not
good for people with
diabetes, as it reflects
too much sugar
(carbohydrate) in the
blood stream for a
period, which can
increase the chances of
getting heart /arterial
disease.
In our bodies we store
fat under the skin,
around organs, in the
liver and in the blood
stream.
One of the
complications of
having diabetes is that
it affects the body’s
ability to metabolize
fats. We all need a
certain amount of fat,
after all, our cells
membranes are made
of fat. However, too
much fat can increase
the chance of getting
heart disease and
hardening of the
arteries, and people
with diabetes already
have a far greater risk
of getting these then
people who do not
have diabetes.
There is fat circulating
in the blood plasma,
called lipids, as
cholesterol and
triglycerides.
Triglycerides come
from fat in food, fat
made by our body or
from unused
carbohydrates we have
eaten that are
converted to
triglyceride for
storage. If we need
energy and we have
not eaten, the body
can convert the stored
triglyceride back to
energy.
Cholesterol is made
in the liver from fat
and links with protein
to be carried around
the body; it is then
called lipoprotein, and
these can be HDL –
high density
lipoprotein – or LDL
– low density
lipoprotein.
HDL is seen as being
beneficial, giving
protection from heart
disease, and is thought
to carry cholesterol
away from the arteries
and back to the liver,
whereas LDL is the
opposite; if there is a
high level of LDl it
4
can make fatty
deposits on the artery
walls, causing them to
narrow (known as
atherosclerosis) and in
diabetics a particular
form of very dense
LDL is often seen.
It is not a good sign if
the LDL level in the
blood is higher than
the HDL, and if the
cholesterol levels and
triglyceride levels are
high, the body is at
high risk of heart
disease and stokes.
the total cholesterol
and LDL levels.
In addition, it is
believed that fish oil,
rich in omega 3 oils,
(which are
polyunsaturated oils),
can help reduce
triglyceride levels and
also help prevent the
blood clotting from
sticky platelets.
Further information
on the above can be
found on
www.bhf.org.uk
For the above reasons,
diabetics have blood
tests to check their
blood lipid profile, so
that early warning of
rising levels can be
monitored and treated
if necessary.
Recently there has
been then
introduction of new
margarines in
supermarkets,
advertising that they
can help lower
cholesterol levels as
part of a healthy diet.
These margarines
contain plant sterols
and stanols and
research has suggested
that they are effective
in helping to reduce
“We have the proof
that we can prevent
the small vessel
complications of
diabetes such as
diabetic eye and
kidney disease. Even
though 80% of people
with diabetes will die
of heart disease, we
still do not have proof
that we can prevent
this type of heart
disease” Dr.Gillian
Booth, St.Michaels
Hospital and Dept
Medicine University
of Toronto.
A new study carried
out in Massachusetts
recently has shown
that intensive blood
sugar control therapy
can slow down the
development of
atherosclerosis.
They looked at the
thickness of the
carotid artery,
measured by ultra
sound, in the necks of
non-diabetic people,
diabetic patients in the
tight control group
and those in the
standard therapy
control group, and
then measured them
again 6 years later.
At the end of the 6
years, all those with
diabetes had thicker
arteries than the nondiabetics, but those
who were in the
standard insulin
therapy group had
thicker arteries than
those in the intensive
therapy group.
It would be useful
if children in the
UK could have
access to
ultrasound scans
to check their
carotid arteries
for thickening,
especially those
children who
developed
diabetes at a
5
young age, and
those who have
had it for many
years – how else
are we to know
the physical state
of their blood
vessels, and
whether their
control is
sufficient to avoid
heart problems.
News from American
Diabetes Association
May 30 2003 Tel Aviv
University
Israeli/US
team create
insulinproducing
cells from
stem cells
Diabetes in mice
was cured by
insulin-producing
cells, from stem
cells taken from
4month old
miscarried human
embryo and
implanting them
into type 1 mice.
They are hoping
that such cells
could be
transplanted into
humans, once a
way to prevent
auto-immune
attack is found.
It is thought the
genetically
engineered
human cells will
be ready for
clinical trials in
humans in 2-3
years time, but
meanwhile the
hunt is on for a
carrier to hold and
protect the cells
from the body’s
immune system.
The importance of
this research is
that for the first
time an unlimited
supply of insulinproducing human
cells has been
developed.
News from
Medscape
Insulin patches
Trial started.
A trial to assess
the use of skin
patches as an
insulin delivery
system started in
May and is likely
to be completed
by the end of the
year. The patch
has a wafer thin
layer of filaments
containing insulin,
and a hand held
activator makes
tiny holes in the
outer skin. It is
meant to be
painless and
needle-free, but is
thought that if it
is successful in
trial will be
available for
patients with type
2 to begin with.
Home HbA1c
Blood Test Kits
now available in
the UK
For the first time it is
now possible to buy,
by mail order, home
HbA1c blood test
kits.
Each test kit can only
be used once, and
uses drops of blood
from a finger prick
sample. The result
takes 8 minutes from
when the blood is
applied to the meter,
and the reading is
accurate to within
0.9.
Each kit costs £15.90
and they are
available from Chirus
Ltd of Watford on
01923 212744. If the
kit is not going to be
used within 30 days,
6
it must be stored in
the ‘fridge
At 2 – 8 centigrade.
Article from Medscape
Reuters Health June 26
2003
Insulin Pump
Therapy Lowers
HbA1c More Than
Insulin Glargine in
Diabetic Children
By Megan Rauscher
NEW
YORK
(Reuters
Health) Jun 18 - In a study
of young type 1 diabetics,
continuous
subcutaneous
insulin infusion (CSII) with
insulin aspart was more
effective in lowering HbA1c
levels than multiple daily
insulin (MDI) injections with
insulin glargine and premeal
insulin
aspart.
Moreover, patients preferred
CSII.
Elizabeth Boland, a nurse
practitioner on the Yale
Pediatric Diabetes Team,
presented
her
group's
findings during the American
Diabetes Association's 63rd
Annual Meeting in New
Orleans this week. Most
previous studies of CSII in
children were retrospective
and lacked randomized
comparisons
with
MDI,
according to Boland and
colleagues.
In an ongoing randomized,
prospective study, they are
comparing the use of pump
therapy with insulin aspart
versus multiple injections (4
per day) consisting of insulin
glargine (once-daily) and
insulin aspart taken at meals
and snacks in 30 patients
with type 1 diabetes 8 to 19
years of age.
"The relative efficacy of
these treatment is of greater
interest with the introduction
of glargine as a better MDI
basal
insulin,"
investigators note
meeting abstract.
in
the
a
"Our preliminary findings [in
26 children] showed that
pump therapy was more
effective in controlling blood
sugar, as measured by
HbA1c, than the multiple
injection regimen," Boland
said. At 4 months, pump
users significantly lowered
their HbA1c levels to 7.2%
from 8.1% at baseline. In
contrast, HbA1c in the MDI
group showed no significant
change
from
baseline,
dropping only to 8.1% from
8.4%.
Pump users but not glargine
users significantly reduced
their required total daily
dose of insulin.
There were 4 episodes of
severe hypoglycemia in the
MDI group and 2 in the
pump group, but no diabetic
ketoacidosis in either group.
After 4 months, all 12
children in the pump group
chose to continue on CSII
therapy and 12 of the 14
children in the MDI group
opted to switch to CSII.
"Pump therapy should be
offered as a treatment to
younger patients with type 1
diabetes to help them
achieve better metabolic
control to prevent later
complications," Boland told
Reuters Health.
Other recent
news from
Medscape
Pancreas
transplants
for diabetic
patients do
not extend
lives
Researchers have
been studying the
long term survival
rates of diabetic
patients with normal
kidney function in
USA who have
undergone pancreas
transplants, and the
surprise results
have shown a
greater risk of
death at 4 years
after transplant
compared to the
patients who remain
on conventional
therapy. At one
year, there is a
survival rate of 93 95 %, and at 4
years 84 – 90%,
depending on where
in USA the
procedure is carried
out. The findings
showed that the
transplant benefits
the patient by
giving an improved
quality of life, but
more than 80% of
diabetic patients
who have a pancreas
transplant are
insulin dependent at
one year.
7
Continuous
Monitoring
Trial
In USA has shown
better control can
be achieved by the
occasional use of
continuous
monitoring of blood
sugar levels to
provide information
for adjusting insulin
doses, as well as its
use to prevent hypo
attacks, and also in
lowering HbA1c.
The trial used the
Medtronic Gold
System, which
provides 288
readings in 3 days.
Experimental
Diabetes Vaccine
A team in Los Angeles
is studying an
experimental vaccine,
given to people who
are developing
diabetes. It is given
at 4 different dose
levels, up to 3 times in
a 6 month period, and
has been successful in
prolonging the bodys
ability to produce
insulin, inhibiting the
autoimmune attack on
the cells, and slowing
progress to type 1
diabetes. Further
studies are hoped to
be looked at in
prevention of
diabetes in at-risk
children.
Site Selection Tips
Appropriate site selection
and timely rotation of an
infusion site are important
steps for optimising your
blood glucose control. The
abdominal area is the most
common
site
utilised
because this area has rapid
and
consistent
insulin
absorption.
There
are
other areas that can be
utilised as well, including
the hip, thigh or arm. It is
important to make sure
that
the
catheter
placement is subcutaneous
(under the skin), not
intramuscular.
When
selecting your site be sure
to avoid scar tissue and
hardened areas; both will
affect insulin absorption
and lead to less than
optimal
blood
glucose
levels.
Overusing a site or not
changing
the
catheter
every two to three days
can lead to infection and
poor insulin absorption of
the insulin. Every medical
professional recommends
changing
the
catheter
every 72 hours. This is
important
because
hypertrophy (hardening of
the skin) is related to the
length of time an infusion
set is left in one site. Over
time hypertrophy may lead
to poor insulin absorption
and
may
reduce
the
number of sites available in
the future.
Ask the questions: Is the
insulin absorbing? When
was the last time a new
site was used? Has it been
longer than 3 days since
the catheter was changed?
If in doubt about the
answers, it is probably
time to change the infusion
set and use a new site.
Timely changes are an
important part of a pump
wearer’s
routine,
but
occasionally there may be a
need to make change more
frequently. If this occurs,
remember
that
this
activity may be one of the
most important steps one
can take to prevent high
blood glucose readings.
Wanted
YOUR NEWS
AND VIEWS
WE CAN’T DO
THIS ALONE !
Phone your stuff
to us on 01590
677911/01462
626695 or email to
Dceased@hotmail.com.
8
NHS FUNDING – LATEST INFORMATION
Funding of Technology Appraisal Guidance from the National Institute for Clinical
Excellence (NICE)
Appraisal #57, "Guidance on the use of continuous subcutaneous insulin infusion for
diabetes" (insulin pump therapy)
NICE published guidance on continuous subcutaneous insulin infusion for diabetes on 26
February. The direction requiring the NHS to fund treatments recommended by NICE within
three months of publication of guidance has been extended to 12 months, as it would not be
feasible to train sufficient healthcare professionals in the use of the insulin pumps within three
months.
The NHS should, however, take over responsibility for funding the cost of consumables and,
in due course, replacement pumps for the estimated 800 established users of insulin pump
therapy for whom MDI with insulin glargine is considered inappropriate or proves to be
inadequate to maintain adequate glycaemic control.
Our view:
NICE Guidelines states that “CSII therapy should be initiated only by a trained
specialist team”. We agree wholeheartedly with that, however, we know that there are
already specialist pump centres in existence, with fully pump trained staff. Why can’t
patients be referred to them?
In the meantime, we welcome the news that “the NHS should take over responsibility
for funding consumables and, in due course replacement pumps for the 2000 (not 800)
existing users”.
If you haven’t got your funding yet, start pushing hard. If you need any help contact
John Davis on 01590 677911.
Other News:
How many of you saw Jamie and Mum, Debbie on Sky News? We’re told that it went out
15 times on Sunday 20 th July, some coverage! Well done Debbie and Jamie. The old fella
in the background is John Davis, filmed last year for the Ryder Cup coverage.
Also thanks to Andrew Dysch, who stepped in at short notice to be interviewed by Sky
News on Sunday morning to put INPUT’s point of view. They picked him up at 6.15am,
took him to the studio where he was subjected to a very aggressive interview by the
newsreader Steve Dixon, who seemed to have lost the plot! Well handled Andrew.
We hope to have copies of the film to distribute, if you would like a copy, please let
John Davis know.
9
Would you like to be a Pump Pal?
Do you remember how nervous, anxious or excited you
were when you began pump therapy? Others feel the
same way and need your help! Before beginning pump
therapy, potential pumpers have many questions. As a
Pump Pal, you could answer many of those questions,
explaining how you adjusted to the pump, if you had any
problems in the beginning or why you love your pump.
If you would like to volunteer to be a Pump Pal, please
contact John Davis on 01590 677911 or by email at
john.davis@input.me.uk You will be matched to someone who is
considering a pump or who has just begun pumping.
Pump Pals are matched based on their gender, age and
interests. We will exchange phone numbers or email
addresses for you. You can discuss your experiences
with someone who will appreciate your insight or you
can discuss questions that only current pump users can
answer. We need volunteers of all ages or parents of
pumpers who are willing to talk to other parents.
Are you a new pump user and looking for a Pump Pal?
Would you like tips on how to exercise with your pump
or what to do with your pump while you sleep? We can
match you with a current pumper who can answer these
questions and more. Just contact John Davis to be
matched with a Pump Pal volunteer.
CHECKING BASAL RATES
Start these tests when at least 5 hours has passed since your last bolus insulin and 3 hours after your
last carbohydrate intake. It is then that only your basal rate will be affecting your blood sugars. Your
blood sugar at the start of testing should be between 5.5 Mmol and 8.3 Mmol. When your blood sugar
stays within 1.7 Mmol from beginning to end of the test, you probably have the right basal right.
Do not start to test if you are ill, after a hypo, after exercise, if you are stressed or if you have eaten a
meal with a high fat content.
Split your testing into 4 sections:




Overnight.
Between breakfast and lunch.
Between lunch and evening meal.
Between evening meal and bedtime.
Test the night basal before the day tests because activities that affect blood sugars, like exercise and
eating, are suspended during the night. Check your blood sugar before going to sleep and again at 2am.
Tests should be repeated until the required results are obtained two or more times at the same basal rate
settings. When the correct night time basal has been determined, a normal waking blood sugar will be
easy to achieve. Don’t forget the 2am test!
It is then time for the day time testing.
For the period between breakfast and lunch, miss breakfast and check blood sugar every two hours.
Have lunch as normal.
For the period between lunch and dinner, have breakfast but miss out lunch, again check blood sugar
every two hours. Have evening meal as normal.
For the period between evening meal and bedtime, have lunch as normal but delay having evening
meal by about 2 hours, again check blood sugar every two hours.
Cautions in Testing Basal Rates:
Test your blood sugar any time you feel it may be going high or low.
If your blood sugar drops to lower than 4.0 mmol. Cancel the test for that day.
If your blood sugar goes above 11.0 mmol. Cancel the test for that day.
Enclosed is a Fasting Record Sheet as used by the Royal Bournemouth Hospital, please follow the
directions for all daytime testing. Check and record blood sugars where you see an *. Give the results
to your diabetes team who will assist you changing your basal rates.
Finally, if your hospital has the MiniMed Continuous Glucose Monitoring System, request that you be
put on it. It measures and records your blood glucose level and produces a computer printout showing
your levels every 5 minutes over a 72 hour period. Later models cover a 5 day period.
If you have any questions or require further information, please contact me.
John Davis