OCTOBER
2008 NEWSLETTER
Justification for IDDT’s position on synthetic
insulins
·
IDDT has
always argued that animal insulins must remain available for people who are
unable to tolerate synthetic insulins – both human and analogue insulins.
·
IDDT has
always expressed concerns that the long-term safety of insulin analogues has
never been established.
·
IDDT has
openly criticised Novo Nordisk for their stated intention to discontinue all
their other types of insulin and only supply insulins analogues.
NEW warnings about NovoRapid justify all IDDT’s
concerns!
Warnings
in the
NovoRapid (insulin aspart) and called NovoLog in
the
On
On
The evidence used by the FD
FD
Is the
The Summary of Products Characteristics (SPC)
documents for all synthetic GM insulins have always had warned about
anaphylactic reactions:
“Symptoms of generalised hypersensitivity may include generalised skin
rash, itching, sweating, gastrointestinal upset, angioneurotic oedema,
difficulties in breathing, palpitation and reduction in blood pressure.
Generalised hypersensitivity reactions are potentially life threatening.”
In the SPC for NovoRapid these reactions are
classed as ‘very rare’ and by the standard SPC definition, ‘very rare’ means
these adverse reactions occur in about 1 in 10,000 people. However, the
evidence from controlled trials used by the FD
IDDT has asked questions of the
·
Is the MHR
·
Is the list of
adverse reactions to NovoRapid going to be revised so that allergic reactions
are moved from ‘very rare’ to ‘uncommon’? If not, why not?
GOVERNMENT REPORT – STILL
Many readers will remember that in 2003 the
National Service Framework for Diabetes [NSF] set targets for standards of care
for people with diabetes which all have to be achieved by 2013. The idea behind
the NSF is to ensure that everyone with diabetes should receive the same
standard of care, no matter where they live. Local Primary Care Trusts [PCTs]
are responsible for making sure that these targets are met.
Five years later, the Government has issued a report on the progress of
meeting the NSF targets.
·
Just half of
patients are receiving the standard treatment.
·
Improvements are
being made to reach all 12 NSF targets. The target that everyone with diabetes
should receive screening for retinopathy [eye disease] by 2008 has not been
achieved in all parts of the country. Progress is being made with the treatment
of other complications but there is still a long way to go in terms of
prevention.
·
There is a need
to increase the number of diabetes specialists.
·
The report
praised the work being done on involving people in their own care.
·
More needs to be
done to improve the management of medical emergencies, specifically
hypoglycaemia.
·
The access to
specialist care for children with diabetes and pregnant women with diabetes is
very variable and needs to be improved.
·
The NHS has
improved its record of early diagnosis of people who were unaware that they had
Type 2 diabetes – over 600,000 have been diagnosed over the last 5 years.
However the report adds that there are still a further 500,000 people
undiagosed.
Still a long way to go
No doubt there have been improvements and we know
from our members that some areas of the country provide excellent care but what
about the rest? There is certainly no room for complacency as we still receive
many calls from people who are certainly not receiving the care they should and
many people, especially those with Type 2 diabetes, don’t seem to have received
very much education about their condition, the food they should eat or
generally how to manage it.
Was setting the NSF targets putting the cart before the horse?
The report comments on the increasing number of
people with diabetes, Type 2 in particular, but this cannot be used as a reason
[or excuse] for not meeting the targets as this increase has been predicted for
many years.
The principle of setting targets of standards of
care to be achieved by Primary Care Trusts has many advantages. However, there
was a shortage of specialist staff and education programmes etc prior to
setting the NSF targets, so as the NSF also included diagnosing the
undiagnosed, can the targets ever be met? Was setting targets without the
necessary staff putting the cart before the horse? IDDT raised this question at
the time.
What’s the state of play now with staffing levels?
From figures published in Clinical Medicine
2008;8,4:377-380
·
the number of
diabetes consultants has increased but the time they spend on diabetes has
fallen from 40% in 2000 to 26% in 2007. 75% of their job plans are spent on
non-diabetes related activities.
·
94% of diabetes
consultants are spending more time in acute-general medicine which means less
time spent for training juniors in diabetes.
·
There is less
time for developing community services with GPs and only 12.8% of consultants
involved in diabetes community clinics.
·
only 38% of
Primary Care Trusts [PCTs] provided psychological support for adults with
diabetes compared with 64% in 2006. For children only 51% provided this care
compared with 69% in 2006.
·
There is still a
shortage of paediatric diabetes specialist nurses and in 41% of PCTs their case
load has increased with an improvement in only 7%.
With figures like this, can the NSF targets be met?
Greater investment in diabetes care is necessary but this seems unlikely.
So what can you do in the meantime? Don’t accept poor care, don’t accept delayed or no retinopathy screening,
complain to your local Primary Care Trust as they are responsible for funding
services in your area.
PORK INSULIN
IDDT receives a number of calls from people
interested in using pork insulin in an insulin pump. We are gathering
So we interested in making contact with people who
are using pork insulin in pumps, people who would like to use an insulin pump
with pork insulin and those who have talked to their health care team about
doing so. We would like to know more about their views and experiences and what
their diabetes health care team think about this as an option.
We believe that most people using animal insulin in
pumps are using pork insulin but if you are using beef insulin, do get in touch
as we would love to hear from you too.
If you fit into any of these categories and are
prepared to help us by filling in a short questionnaire, please contact Jenny
at IDDT on 01604 622837 or e-mail jenny@iddtinternational.org
We would very much appreciate your help.
INTRODUCING M
Hi Everyone,
My memories of growing up with a sister with
diabetes are very mixed, some very happy, others not so happy, but that’s just
the same as anybody isn’t it? I don’t really remember the conversation I must
have had with Mum and Dad, when I was told that my sister had been diagnosed
but I do remember spending what seemed to be hours sitting outside the
children’s ward at the hospital. I suppose I used to feel a bit jealous of the
attention that she was getting but found it difficult to say this because I
knew she was ill and that was selfish and then I’d feel guilty. I think I was a
bit confused to say the least.
That said there was an upside – all this
fascinating new stuff that came into the house, metal and glass syringes with
screw on needles, urine testing kits with fizzing tablets, test tubes and
colour charts. My sister and I discovered that if you put enough of these
tablets in a test tube with some water then they could get so hot that the tube
would crack – a bit like Mum’s temper when she found out what we had been
doing!
Like any brother and sister we also used to argue
and sometimes these were because she was hypo and thus bad tempered but what
then used to happen was that she would have something to eat and wonder what
the fuss was about and why I was still cross. These days I’ve just realised
that she doesn’t have to be hypo - sometimes she is just plain bad tempered.
Things have certainly changed since my sister was
diagnosed. I can remember Mum fundraising for the local branch of then British
Diabetic
Coming back into the loop, starting to work for
IDDT has made me realise how much there is to know and how mind-boggling the
choice of treatments can be, so even though I have quite a lot of experience of
living with someone with diabetes I can only start to imagine what it is like
to be someone who is newly diagnosed or a member of their family.
Martin is employed to help to both raise funds and raise the profile of
IDDT but he has the added ‘advantage’ of having a sister with Type 1 diabetes!
Sometimes parents are worried about how their children without diabetes are
feeling, so if you would like to talk to
IDDT NEWS
Thanks to
IDDT’s
The
To
Ruth
contacted IDDT because she wants to help children and young people with
diabetes in developing countries. Ruth put the idea of sponsoring a child with
Type 1 diabetes in
IDDT
would like to say her huge thank you to Ruth and her year group for helping
To Jackie Banks for fighting
the DVL
Nationwide Community and
Heritage
IDDT’s
Co-Chairman, Jenny was a winner in the Community – Individual category of the
To Brenda Smith and The Greene King Summer
Charity Darts League
We must thank Brenda Smith
and her family for choosing to hold their Summer Charity Darts League in aid of
IDDT. Over £1400 was raised and a presentation made at the finals at the Tally
Ho public house in Lewes. Brenda’s friend and IDDT member,
W
Byetta [exenatide] is a relatively new injectable
drug for the treatment of Type 2 diabetes.
In the UK acute pancreatitis associated with taking
Byetta is not listed as an adverse reaction but the
In October 2007 the US FD
In
Regranex [becaplermin] – is a
prescription gel made by Johnson & Johnson used to treat diabetic leg and
foot ulcers caused by neuropathy.
In the
Champix [Varenicline] – it has been
known for some time that this non-nicotine, anti-smoking drug can have adverse
effects. In the
DISCRIMIN
In our July 2008 Newsletter we discussed
discrimination at work and that although we don’t generally consider diabetes
to be a ‘disability’, it does come under the Disability Discrimination
I was booked in to a B&B in Combe
On the second day, I had lunch, went for a wander on the beach and then
went back to the B&B about
The owners of the B&B were in and out of the room, when the wife said I
would have to leave "as they were not running a care home". I was so
angry I wanted to leave there and then but had to wait until the next
morning.
The next morning I woke up and asked if the owner would help me with my boxes
of dialysis fluid because they were too heavy for me to carry to the car. They
said they could not do this until after breakfast.
When Christine rang IDDT about this, words failed
us! Here is someone maintaining her independence, unfortunate enough to have a
hypo while on holiday. It can happen to anyone with Type 1 diabetes but to be
treated with such ignorance is unbelievable!
C
eBay Weekend
What a lot of people don’t realise is that every
time they sell an item on eBay they can raise money for charity – including
IDDT.
How to donate to IDDT by selling stuff on eBay – it’s really quite
simple
1. Log on to www.e-bay.co.uk
2. Once you’re ready to sell your item, go to the Sell
hub and select ‘
3.
4.
Everyone’s a Winner!
You Win - every time you list an
item for charity, you’ll get a fee credit on your basic insertion and final
value fees equal to the percentage you donate. So if you donate 50% of your
selling price to a charity, eBay will waive 50% of your fees.
We Win – every time you sell an
item, Missionfish will collect your donation and after deducting a small fee to
cover administration, pass your donation on to IDDT.
We know it works, thanks to Jean
Jean from
IDDT’s eBay weekend, January 17th and 18th 2009
Of course you can start selling items on eBay to
donate a percentage to IDDT anytime and we are always grateful for your help.
But we are making January 17th and 18th 2009 ‘IDDT’s eBay
Weekend’ by asking everyone with internet access, to get involved. It’s a good
opportunity to sell any unwanted items, especially any Christmas presents that
maybe you don’t really want! If we all list our unwanted items, however small,
and donate a percentage to IDDT, not only can we have some fun but we can raise
a tidy sum – the old saying of look after the pennies and the pounds take care
of themselves.
Other ways to use eBay to help IDDT
If you run a business that uses eBay, you can help too!
If your business uses eBay to sell then you can
also register to donate to IDDT, again with benefits:
·
your listings
are highlighted with a yellow and blue ribbon,
·
your business is
associated with a good cause and
·
there are
significant tax benefits.
For more
Special
The final way you can help IDDT is by holding a
special auction.
·
‘money can’t
buy’, one of a kind items or experiences,
·
items with
celebrity status,
·
unique or
extraordinary items,
·
extremely
valuable or rare items.
If you need any help or have any ideas or items for
a special auction, then please contact
NICE GUID
NICE issues guidance is about the use of medicines,
devices and treatment in the NHS in
1. Pump therapy is recommended as a treatment option
for adults and children 12 years and older with Type 1 diabetes provided that:
·
attempts to
achieve target Hb
or
·
Hb
2. Pump therapy is recommended as an option for
children younger than 12 years provided
that:
·
MDI is
considered to be impractical or inappropriate, and
·
Children on
insulin pumps would be expected to undergo a trial of MDI between the ages of 12
and 18 years.
3. Pump therapy should only be started by a trained
specialist team who should provide structured education programmes and advice
on diet, lifestyle and exercise appropriate for people using pumps.
4.
5. Pump therapy is not recommended for the treatment
of Type 2 diabetes.
More
INTERESTING COMMENTS ON CONTINUOUS GLUCOSE MONITORING SYSTEMS BY
We all place high hopes on the development of
continuous glucose monitoring systems. These are now available but are only to
be used to pick up trends in blood glucose levels and cannot be relied on for
making dose adjustments.
There was an interesting letter in Diabetes Health
[
·
The readings are delayed in time and can lag behind the actual blood sugar
concentration by as much as 20 minutes. This is because they sample
interstitial fluid [fluid in the cells] which may take up to 20 minutes to
change in the same direction as blood glucose. Standard finger-prick monitors
use capillary blood which represents the current blood glucose levels. This
time lag means that they cannot reliably protect against hypoglycaemia as 20 minutes
can be too long before treating the hypo. This is not helped by the sensors
being inaccurate at both high and low blood glucose levels.
·
Both manufacturers warn that continuous monitoring
systems are not a substitute for finger-prick testing and decisions about insulin dose must be made on
the basis of finger-prick tests. So using continuous monitoring does not reduce
the number of daily finger-prick tests.
·
These devices and the sensors are very expensive costing between £400 and £500 in the
·
People using a pump need two subcutaneous
insertions and for slim people this can be a problem as the
abdomen fat they use for the pump insertion site may not be large enough for
two insertion sites. Unlike the pump infusion set, the sensor probe of the
continuous monitoring system bends more easily and therefore any area of the
body that is continuously being flexed or that bears weight is not a good
choice for the sensor probe to be inserted.
Undoubtedly continuous glucose monitoring systems
are useful for people who wish to monitor trends in their glucose levels but as
this user points out, people need to be aware of the drawbacks too –
What does research say?
Trials have mostly failed to find a significant
improvement in control with continuous glucose monitoring [CGM] compared to
finger prick tests. Several studies have shown that CGM may help to detect
night hypos and one study showed that CGM helped to motivate people with Type 2
diabetes to take more exercise.
The results showed that Hb