Patient

Information

Paediatric Diabetes

Paediatric insulin pump workbook for

children and young people living with
type 1 diabetes
Information for children and parents/caregivers
This workbook is designed for children and young people living with type 1 diabetes
and their parents/caregivers. The aim is to help them understand and operate their
chosen insulin pump, understand what to do if they have hypoglycaemia; how to
troubleshoot hyperglycaemia, and understand how to operate the advanced features
of the pump. The workbook also provides a guide to refer back to when they are
unsure of what action to take.

Pump handset

Patch pump

Name: ________________________

Insulin pump: ____________________

Glucose monitoring: ____________________

Started on pump pathway: ___/___/______

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Contents
Introduction to insulin pump therapy ................................... 3
Expectations ............................................................................ 6
Session 1 ................................................................................. 9

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Introduction to insulin pump therapy

Insulin therapy
Intensive insulin regimes are delivered by:
 Multiple daily injections – MDI
 Continuous subcutaneous insulin infusion (CSII) – pump therapy

Your child has been approved by the Multidisciplinary Team (MDT) for insulin pump
therapy based on the guidance of the National Institute for Health and Care
Excellence (NICE). Insulin pump therapy is also referred to as Continuous
Subcutaneous Insulin Infusion ‘CSII’. NICE criteria for insulin pump therapy includes
people of a young age where injections are impractical or
inappropriate, or who have disabling hypoglycaemia or
high HbA1c despite intervention.

An insulin pump is made up of an insulin reservoir

(typically storing 160-300 units of insulin), an infusion set
with a small cannula (made of plastic or metal), a battery-
operated motor and display screen.
Figure one
There are two main types of pumps:
 Tethered pumps: where tubing connects the insulin
reservoir in the pump to the infusion set where
insulin is delivered (Figure one).
 Patch pumps: tubing-free, where the insulin
reservoir also has a cannula to deliver the insulin,
controlled by a separate handset (Figure two).
Figure two

Multiple Daily Injections ‘MDI’

As you know, MDI requires a long-acting (basal) insulin delivered either once or
twice per day. Examples of this type of insulin are Lantus, Levemir or Tresiba. As the
liver releases a small amount of glucose throughout the day to give energy for
normal body processes, this basal insulin helps ‘mop up’ that glucose for it to be
used appropriately. As basal insulin has an action time of 16-36 hours, it lowers the
risk of developing Diabetic Ketoacidosis ‘DKA’.

A rapid-acting (bolus) insulin is then required with carbohydrates or as a correction

for hyperglycaemia. Examples of this type of insulin are NovoRapid, Humalog or
Fiasp. This mimics what the pancreas would normally do in response to a rise in
glucose, releasing a large amount of insulin to use the glucose from food, or to bring
the glucose back down into target range.

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MDI involves in at least four to five injections per day +/- corrections, and has a
limited flexibility to manage glucose levels more responsively during the day as once
insulin has been injected, it cannot be sucked back out.

Continuous Subcutaneous Insulin Infusion ‘CSII’ – insulin pump

therapy
An insulin pump needs to do the job of providing both basal and bolus insulin,
however only uses rapid-acting insulin. To achieve this, a continuous basal rate is
set within the pump to replace the job of the basal insulin injection.

Basal rates are set to reflect what the body would naturally require as insulin
requirements differ throughout the day as a result of varying hormones (the
hormones that regulate the body clock also affect insulin sensitivity).

A pump can be programmed to deliver varying basal rates across the day to meet
these varying needs: typically people need at least four different basal rates across
the twenty-four hours. We do not recommend programming more than six or seven
basal rate timeblocks every twenty-four hours because, due to rapid-acting insulin
action time peaking at sixty to ninety minutes, we know this would not achieve the
desired outcome.

The pump is also programmed with your child’s insulin to carbohydrate ratios (ICR)
and insulin sensitivity factor (ISF), also known as correction factor, to bolus for
meals/snacks and corrections. The pump takes into account the last insulin doses
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given to calculate how much active insulin there is on board to help avoid over-
correcting and hypoglycaemia.

As outlined on the next page in ‘Expectations’, pump therapy involves more glucose
checks per day in order for the pump to work effectively. Now that updated NICE
guidance regarding glucose sensors has been approved by the Integrated Care
Systems ‘ICS’ (the funding body of the NHS and formally known as the Clinical
Commissioning Groups), glucose sensors are more widely available.

Glucose sensors
There are a variety of glucose sensors available:
 Flash glucose sensors such as Libre 2 which need to be scanned by a
handset or mobile phone app to obtain a glucose reading.
 Continuous glucose monitor (CGM) sensor such as Dexcom One, Dexcom
G6, Dexcom G7, Libre 3, and Medtronic Guardian4 which send a new glucose
level to a receiving device such as a handset or mobile phone app every five
minutes or so.
All glucose sensors work in a similar way. They have a thin sensing filament which
sits under the surface of the skin to read the glucose levels in the interstitial fluid. We
know that glucose levels in that fluid are similar to glucose levels in the bloodstream
so despite a slight delay or difference in the values, sensor data can be used to
make treatment decisions.

Hybrid-closed loop systems

This is when an advanced CGM such as Dexcom G6 or Medtronic Guardian4
informs the insulin pump what the glucose levels are to allow an algorithm (software
application) to make changes to insulin delivery on the pump. With some pumps, this
happens directly from the pump to the sensor. With others it needs an app on an
Android phone to allow the sensor and pump to communicate.

Clinical trials have shown that hybrid-closed loop systems improved glucose levels
without increased risk of hypoglycaemia and improved patient quality of life.

At present, choosing a hybrid-closed loop system requires your child to have use of
an advanced CGM. Please speak to your diabetes keyworker if your child does not
currently have an advanced CGM but would like one to choose a hybrid-closed loop
compatible pump.
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Expectations
What you can expect from the CUH paediatric diabetes team

 We acknowledge that you already know your child’s diabetes very well using
Multiple Daily Injections and we will build on that existing knowledge for you to
safely move to using insulin pump therapy.
 We prioritise your child’s safety and wellbeing above everything else.
 We will ensure you have the correct equipment prior to starting on the pump.
 We will provide general training for school staff with specific pump education
for the new pump. This will be virtual.
 We start a limited number of children on insulin pumps at any one time to be
able to provide adequate close support for your child and family.
 We provide a minimum of five structured pump pathway education sessions
which are approximately one to two hours in length to allow enough time to
deliver the essential information. (Pump pathway ‘Session 3’ is the insulin
pump start).

What we, the CUH paediatric diabetes team, expect from families

 At all education sessions, attendance by both parents/caregivers as far as

possible. We understand this may not be possible for all families, therefore
the alternative is for the same parent/caregiver to attend all sessions.
 Between five to eight glucose checks per day (finger-prick or sensor readings)
to get the best out of the pump.
 Accurate carb counting for all meals and snacks.
 Infusion set changes every two to three days.
 That a rapid-acting insulin injection should be given if infusion set/pump fails.
 Carrying a diabetes kit bag containing spare rapid-acting insulin vials for a
reservoir change, a spare infusion set for an urgent change, a rapid-acting
insulin pen for an injection correction in addition to hypo treatment, glucose
and ketone meter.
 Maintaining an adequate stock of required equipment (pump supplies &
spares, insulin & insulin pens)
 Keeping a stock of in-date back-up insulin pens, rapid-acting insulin and long-
acting insulin pens in case of pump failure.
 Commitment:
o As we have had to apply for pump funding from the ICS we must
demonstrate it is improving your child’s diabetes.
o The pump you and your child choose is a four-year commitment due to
the length of the warranty. At the end of that time, we must reapply for
funding which we can only do if it has been used appropriately and
leads to improvements in the management of your child’s diabetes and
their quality of life.
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o As part of that we need to demonstrate to the ICS that you and your
child engage in their insulin pump therapy. This is measured by regular
attendance at their clinic appointments, keeping in touch with the team
and using the pump appropriately.
o Pump insurance: we advise you to add the pump to your household
insurance or take out dedicated pump insurance (as the company
warranty only protects against technical faults or general wear and tear
but not accidental damage, loss or theft).
 Time off school and work: We strongly recommend some time at home in the
first few days of starting to use an insulin pump, to optimise use whilst
adjusting to the change in management with close parental supervision.
 Children and young people should be involved in the pump education to a
level that is age appropriate for them, but specifically those over eleven years
old should be actively involved in the knowledge and skills we will teach.
 Committing the time and agreeing to complete any work expected of you
before or after appointments.
 Upload pump data as requested. This is for you and your child’s safety and an
ongoing expectation during pump use.
 We ask that you complete an up-to-date school healthcare plan for the new
pump (we provide the template), and meet with the school once your child has
started to use it to show them the new diabetes management.

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Introduction reading completed: _ _/_ _/__ __

Parent/caregiver to complete

Homework
 Prior to attending the appointment, please read the Session 1 pages and
complete boxes one to three with the requested information in the Session 1
reading.

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Session 1
Insulin pump advantages
We know that a child or young person and their family will have their own ideas on
why a pump would help their diabetes.
If it helps, use this space to write some of your hopes about an insulin pump:

Box one

Here are some other advantages:

 Fewer injections (one infusion set change every two to three days)
 Basal rate on the pump can be adjusted to better mimic how the pancreas
works
o It better matches the body’s normal insulin production which can help
achieve better glucose values (HbA1C, time in range)
 More flexible to your child’s lifestyle
o Basal rates can be fine-tuned to daily needs such as exercise, illness,
and school days compared to weekend days
o Temporary basal rates of insulin delivery can be increased/decreased
to help with exercise or illness
 More flexibility with eating
o Bolus insulin can be matched more closely to different types of meals
due to small increments of insulin
o Extended bolus function can help with ‘difficult’ meals such as pizza or
takeaway food (some insulin can be given upfront, then the rest over
the next few hours)
o More flexibility with eating different foods and snacks.
 Pumps can link with other technology such as glucose meters, CGMs, and
data management systems
 Pumps can be part of a hybrid-closed loop system if CGM is available

Insulin pump disadvantages

We also know that a child or young person and their family may have some
reservations about the idea of an insulin pump.
If it helps, use this space to write some of your worries about an insulin pump:

Box two

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Here are some other disadvantages:

 Visible
 Must be worn all the time (except when taking a bath/shower or swimming)
 Higher risk of DKA, as pump only gives rapid-acting insulin which can wear off
between two to four hour in event of infusion set failure / pump battery loss
o Risk can be reduced by:
 Changing infusion sets every three days
 Changing infusion sets before dinner not before bed, so that
any problem with the infusion set can be spotted before
everyone goes to sleep
 Knowing how to inject rapid-acting insulin when necessary
 Learning how to manage high blood glucose – ‘hyperglycaemia’
 Pumps are not easier than giving insulin injections
 Lots of new information to learn – some families report it is like starting
diabetes from scratch, and their previous knowledge and confidence does not
always directly translate.

Considerations about what pump to choose:

 Tethered vs. patch pump  Wearable on body?
 Size / weight  Charging time vs. battery life
 Placement sites  Lifestyle
 Visibility  Waterproof
 School practicalities  Whether there is a linking sensor
 Does CGM choice impact the  Hybrid-closed loop system
decision

If it helps, use this space to write what your priorities for an insulin pump will be:

Box three

Infusion set sites:

Infusion sets can be worn where injections can be
given. If using a tethered pump, consideration of
where the pump will be clipped/worn is also
important. For example using the arm as an
infusion set site for a tethered pump might be tricky.
The ‘recommended’ areas are better for tethered
pumps, while the ‘possible’ areas can be used for
patch pumps.

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Trial of an infusion set insertion:

Pump therapy cannot go ahead without your child tolerating an infusion set insertion.
There will be opportunities to try this in these pump pathway appointments. If it
becomes apparent that your child is struggling to tolerate an infusion set insertion,
we will have to pause the pump pathway education and refer your child to our
play specialist.

Above are examples of infusion sets.

Pump ‘show and tell’ video:

The following video was created by the CUH diabetes team:

https://youtu.be/I4ptg3ZHa28
It does not quite contain all the pumps we now offer, however can be useful to
reference back to after you’ve seen the pumps in person.

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Pumps we currently offer at CUH:

Medtronic 780G Tandem T:Slim

(if Guardian4 CGM available, can be (if Dexcom G6 CGM available, can be
hybrid-closed loop) hybrid-closed loop)
mylifeCamAPS FX with Ypsopump and DexcomG6 or Libre3

(hybrid-closed loop, so only an option if CGM available)

Omnipod Dash Omnipod 5 with SmartAdjust

(hybrid-closed loop, so only an option if

meets criteria and CGM available)

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Session 1 completed: _ _/_ _/__ __

Parent/caregiver to complete

Homework for Session 2

 Have a think about your preference and do reading about that pump
 Complete carbohydrate counting quiz

You now have a cooling off period. We will not chase you for your decision. We
expect you’ll contact us either with your pump choice or for a further discussion on
the options. At that point we will give you the Session 2 information for you to read
and fill in.

If we do not hear from you within four weeks, we’ll assume you’ve decided that a
pump is not currently the right diabetes management for your child and move you to
the bottom of the waiting list.

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