Many people ask about insulin pumps, what they are and if they are something they would benefit from. Although not extensive, this page answers some of the Frequently Asked Questions that we are asked. Please feel free to discuss pump therapy with the team if you would like more information.
What is an Insulin Pump?
An insulin pump is a machine that is worn and, as the name suggests, "pumps" insulin into the body through a plastic tube called a "cannula". Although the technology is always developing, at the moment human beings still have to programme it so that it knows how much insulin is to be given. This means that it doesn't "do it for you," although it may be that one day this is what happens.
Basically a pump does the same job as an insulin pen, but because the pump is attached to the person all of the time it means that fewer injections are needed.
How many children in GGC use insulin pumps?
The exact number is always changing but around one-third of those who are looked after in GGC wear insulin pumps.
Is there a limit to the availability of insulin pumps?
Not any more. When insulin pumps first came out, we had to prioritise patients based on clinical need. Now, almost anyone is eligible for one as long as they have a good understanding of how to look after diabetes.
If there's no limit to availability, why doesn't everyone use one?
In short because not everyone wants one and not everyone would use it properly. Some don't test their glucose often enough. For others, their diabetes control is poor (although this isn't necessarily going to stop someone getting a pump, we would want to improve their control before starting a pump if possible). Some people simply don't want to have something attached to their body for 24 hours a day, 7 days a week.
How are pump candidates chosen?
Candidates for pump therapy are chosen first on the basis of clinical need. In GGC we have developed a system of bringing details of possible candidates to a regular multidisciplinary meeting where the whole team will discuss the pros and cons. If it is agreed that a patient justifies pump therapy then the next step is to make an assessment of priority. In most cases this results in the name being placed on a short waiting list but if there is an urgent requirement e.g. diabetes in a baby (which is extremely difficult to manage with injections) arrangements will be made to commence with a pump as quickly as possible. Families will be aware that pump therapy is highly likely to take place at a particular time but we often cannot commit to an exact date until a month or two before starting. This is because we constantly have to re-prioritise depending upon individual clinical circumstances. While this may mean a delay for some families, this is the only way to best use our limited resources. There is a firm agreement between management and the diabetes team that this prioritisation will be based only upon clinical grounds.
What is the "Waiting List"?
The waiting list is for a "Pre-Pump Assessment" to take place, and is not an automatic route to starting pump therapy. Having an assessment is a requirement for all patients considered for pump therapy, and allows an intensive assessment of a young person's diabetes knowledge and management while on multiple daily insulin injections. Depending on how this assessment proceeds, their suitability for pump use will be reviewed. If there are concerns regarding a young person's and their family's ability to manage diabetes during this period pump therapy would be considered inappropriate for this patient.
Once the pre-pump assessment is complete, the family will be given an indication of when training on the insulin pump will take place.
How is training for pump therapy organised and how long does it take?
In most cases training takes place in groups of 4 or 5 families, and usually over three full days - a Thursday, Friday and Monday. The Thursday and Friday are to learn the principles of using the pump. A family member will often wear a pump over the weekend (don't worry, there's no insulin in it!) to practice these skills, and then on the Monday the young person will "go live" on their pump.
But the training doesn't end there. Over the next few days, one of the team will keep in close contact before seeing the family again 3 days later. This is so they can supervise the cannula being changed and can discuss some other aspects of pump therapy. This particular appointment usually only takes about 1 hour.
The final piece of training takes place about 6 weeks after starting on the pump. The families return for a half-day group session to go over some of the more advanced features of pump therapy.
There is quite an investment of time for everyone - both families and the diabetes team - to start people on an insulin pump. It's certainly not something we feel can be rushed.
I've heard insulin pumps can be dangerous. Is this true?
Yes. While properly managed pump therapy can be very effective and is safe, lax practices can be dangerous. Unlike injected insulin, which remains active for some time, a pump delivers such small amounts only a very tiny insulin depot is in the body. Not testing blood glucose for 12 hours could easily mean a displaced cannula is not noticed. Keto-acidosis can then develop very quickly as no insulin is being infused.
How much does an insulin pump cost?
The average cost of an insulin pump is around £2500-3200 with annual supply costs (excluding insulin) of about £1500.
There are different makes of insulin pumps. Which ones can be offered?
At the moment, the diabetes team can offer 3 different insulin pumps, though it should be noted that not all pumps are suitable for everyone. Some pumps, for example, cannot give a small enough infusion of insulin. Others may not be able to hold enough insulin to last a full 3 days. The specifics can be discussed with a family during the pre-pump assessment period, at the point where the family can choose from those pumps on offer. These are the pumps we currently provide (shown in alphabetical order):
What if I change my mind about the type of pump I want?
Once someone has started on pump therapy, there is no scope to change to a different pump until that pump has reached the end of its warranty. For most pumps the warranty lasts for 4 years and we would normally "upgrade" pumps at some point between Year 4 and Year 5. So essentially this means that people will wear the same pump for 4 to 5 years.
Once I start on an insulin pump, do I stay on pump therapy forever?
If a pump works well for a patient and family and diabetes control is good then pump therapy will continue but, especially in teenage years, some people will decide that they no longer wish to be on a pump. They can return to pen injections at their request. Sometimes they ask for a "pump holiday" of a few months, and this is often a good thing as it allows them to reassess what they liked and didn't like about the pump.
Additionally, and where the pump has been supplied by the NHS, if the clinical outcome is unsatisfactory e.g. poor control, inadequate monitoring, etc. the team reserves the right to withdraw the pump. Such a step would not be taken without prolonged discussion with the family and strenuous efforts to improve the situation.
I've seen a different pump advertised and would prefer it to one you currently offer. Can I buy it myself?
Some people do "self-fund" medical devices like insulin pumps and we cannot stop anyone from doing so. However, before doing so please discuss your situation with the diabetes team. If you self-fund, we would be unable to support with training for the family or for schools. We can still help with blood glucose management.
What about Continuous Glucose Monitoring Systems (CGMS)? Can I get this?
CGMS has been around for quite a few years and these devices are now increasingly being integrated with insulin pumps, allowing the pumps to make some limited decisions about the amount of insulin to be given. It's still early but it may one day lead to the development of an artificially intelligent insulin pump that does everything for the person.
At the moment, however, CGMS is something that the NHS in Scotland has limited access to. In GGC, we have to apply on a cse-by-case basis for those we consider most clinically vulnerable.
We have a separate section for FAQ's about CGMS here.
Does this mean injections will never have to be given again?
No. When things are going well, no conventional insulin injections with a pen or syringe are required. However, if the blood glucose goes high and ketones are present, it is important to have insulin by injection until you have sorted out whether the pump is working properly. Also, you may want to have a break from the pump (e.g. for a holiday) so have to go back to pen injections for a while.
Tandem t:slim X2
How do I know if the settings that are programmed into the pump are correct?
In just the same way as with injections, looking at and responding to the glucose results is important. The same principles apply. A family should review their results at least a couple of times a week and decide if changes need to be made. We understand, however, that making changes to insulin doses (on injections as with pumps) can be daunting, especially at the beginning, and so we can help with this when you get stuck.
Data from the insulin pumps can be uploaded to the web-based applications and you should allow sharing of this data with the diabetes team, so that we can see the same things you can see.
This link here will take you to a page with more information on sharing data.
If I am admitted to hospital, can I keep using my pump?
In most cases, the answer to this question is "yes" but it does depend on two things: 1) how unwell you are, and if your condition can be looked after safely on the pump; and 2) if an adult who knows how to use the pump can stay with you and takes full responsibility for using it during the admission. The nurses in the ward have not been trained on how to use the pump and so if an adult cannot stay you will either need to go back on to injections or have insulin given through an intravenous infusion (what some people call a "drip").