Young people talked to us about their experiences of using an insulin pump for type 1 diabetes.
What is an insulin pump?
An insulin pump is made up of a battery-operated pump, a pump reservoir holding 2 to 3 days worth of insulin, and a computer chip that allows the user to control how much insulin the pump delivers. It is all contained in a plastic case about the size of a small mobile phone.
How does it work?
The pump is attached to a thin plastic tube (an infusion set) that has a soft cannula (plastic needle) at the end through which the insulin passes. This cannula is inserted under the skin, usually on the abdomen (belly). The cannula is changed every 2 to 3 days. There is also a new kind of insulin pump therapy that is a tubing-free insulin patch pump where the patch is directly attached to the skin. It needs to be refilled with a syringe every 3 days.
Both types of pump deliver insulin in 2 ways:
- Releasing a low dose (of rapid-acting insulin) every few minutes, 24 hours a day, to maintain the basal level. This insulin keeps blood glucose in the desired range between meals and overnight. This does the same job as basal insulin, but is more flexible, and the rate can be changed during the day if need be, for example, if your body releases more stored sugar in the mornings, or if you know you will be doing a lot of exercise, which means less insulin is required.
- Larger bolus doses are activated by the user before meals, just as with a bolus injection.
Reasons for using an insulin pump
Some of the young people we talked to are using or are thinking about using an insulin pump. People having difficulties controlling their blood glucose level often consider using an insulin pump for better management. Insulin pump use is associated with better glucose control and fewer events of hypoglycaemia.
Before pump therapy, people talked of being unable to judge how much insulin to take; of going constantly high and low for no apparent reason; and of getting high HbA1cs. (See also ‘Managing diabetes as a teenager‘, ‘Hypos‘ and ‘Highs‘).
One young woman was 12 when she started using an insulin pump because at that point she’d had to increase the number of injections she was having (people with type 1 diabetes need to inject every time they eat food with carbohydrate in it) and was still not getting satisfactory control of her diabetes. Another young woman who also started using a pump was pursuing a career in performing arts and found that her glucose level would go very high every time she performed, so asked her diabetes team for help.
Explains why an insulin pump will suit her and what an insulin pump does.
For about four years he was having difficulties controlling his blood glucose level.
Her sport was her main motivation to use an insulin pump.
Every time she was on stage her sugar level would go very high. Her diabetes team helped her to…
Sophie wants to use an insulin pump to get and maintain good control and to give herself the best chances when she makes decisions about having children.
According to the young people we talked to, an insulin pump gave or will give them greater flexibility and freedom in terms of mealtimes and what they can eat. These young people are mostly students and tend to have unpredictable daily routines. A consultant had recommended an insulin pump to one young woman, who was suffering from high blood glucose levels, because she was planning to go to university the following year. Her consultant emphasised however, that it will only work if she is willing to work with it. Another university student said that she has a busy daily routine so tends to eat ‘on the go’ rather than have meals.
Her consultant suggested that if her present insulin regimen doesn’t suit her she could try the…
Says that now it is possible to eat something on the go but that she couldn’t have done that on a…
After attending a specialist pump service, 6 people we spoke to had receive funding for an insulin pump, and 1 girl had been offered a pump while another had applied for it. The girl who applied for a pump said that there is a long list of people waiting to receive one. The parents of 2 other young girls bought their insulin pumps themselves.
Her mother got a loan to buy the insulin pump and consumables but the training and support was…
Katie got an insulin pump about a year after her diagnosis and says that it has helped with schooling and sport as well as making it easier to fit in’s with her friends.
Lewis’s Care Team secured funding for his insulin pump after the continuous glucose monitor showed that his insulin therapy was not working well for him.
Learning to use an insulin pump
The young people we talked to said that you would need a lot of help and supervision from specialist diabetes ‘pump’ doctors and nurses. Also that having a practice session and talking to other young people who already use an insulin pump is a good idea before you decide whether to use one or not.
She talked to other young people already on insulin pumps and had a trial session before deciding…
Katie talks about the three day course she attended to get her started on her insulin pump.
Insulin pump technology has moved on, earlier models are now being discontinued and new ones are being introduced into the market. But visually impaired people like Sarah still face challenges. She explained that to date there are still no insulin pumps that provide instructions in audio format.
Insulin pumps are on average replaced every four years, and young people and their parents get to choose from the models that are available at their hospitals and not from what is available in the market. They felt that choosing a pump a second time round is based both on past experiences and their present priorities and needs. But young people also felt that insulin pumps are a bit harder to get in some adult clinics.
Advantages of using an insulin pump that the young people we talked to told us about included: the ability to set alarms to care for specific needs (such as when exercising) as well as more regular settings like alarms for when the insulin cartridge is running low or, the battery power is low. They also talked about the ability to change the insulin dose and to do correction doses to cater for when going low or high.
Any young person considering using an insulin pump needs to be aware that to make it work requires commitment, time and a willingness to learn. The young people we talked to said that you need to understand much more about carbohydrate counting; and become more accurate about calculating insulin/carbohydrate ratio. Also, pump therapy requires a minimum of four blood glucose tests a day to be safe on pump therapy. Young people said that it takes several months to feel confident about using the pump and some still find some things difficult to do.
Describes getting used to wearing his pump, inserting a new cannula and working out the…
She has been using an insulin pump for almost 6 years and says that it takes several months to…
Sarah says that the first year was a difficult one because it required her to do lots of blood tests and skipping meals to adjust the insulin dose to meet her needs.
Young people we talked to explain that the use of an insulin pump requires them ‘to be on the ball all the time’. Sarah recalled an incident when she was on tour and she run out of insulin cartridges and ended up in hospital with DKA (diabetic ketoacidosis). Serious medical situations could be avoided by taking simple practical steps such as always carrying a bag with spare bits of equipment: needles, cannula, tube, battery, ketone testing kit e.t.c. Young people found it reassuring to always carry a couple of insulin pens and needles in case the insulin pump fails.
Insulin pump users did feel well supported by nurses and manufactures when they had problems with the pump or battery. They said that manufacturers have 24/7 customer service and have offered excellent support and technical advice, they were also able to deliver a new pump within hours.
Problems can and do occur with insulin pumps; like blockages in the cannula or a pump malfunction that fails to deliver insulin. If blood sugar rises as a consequence, young people said that it is very important to do an insulin injection first, and deal with the pump malfunction later.
The young people we talked to said that they’d been a bit concerned about the insulin pump being so visible at first. They also said that it gets in the way when they’re trying to sleep. One young woman was afraid of people coming too close to her in case it hurt. On the plus side they said that an insulin pump can be disconnected for about 1 to 2 hours so there’s no problem when going for a shower or doing sports. But most of the pumps available now are waterproof. People also described them as sturdier and they felt confident to remain connected to the pump all the time even when playing contact sports. Newer models tended to be lighter and smaller, ‘like a pager’. Still, Katie preferred not to use her insulin pump when on holiday and reverted to insulin pens when abroad.
Says that at first she was not so sure about using the pump because she had to attach it to her…
During summer holidays Katie uses insulin pens instead of her insulin pump. She starts using insulin pens a week before going abroad.
Not everyone likes using an insulin pump
An insulin pump is not for everyone. One young man thought about using one but decided against it because he found it too impractical. He went on to try another insulin regimen instead. One young girl found it difficult to cope with the curiosity of others at school and became depressed. She changed to insulin injections. On the other hand, Katie and Lydia said that a pump is discreet and at school they no longer have to go to the toilet do an injection.
Decided not to use an insulin pump and says that his new insulin regimen works in the same way…
She found the insulin pump to be a constant reminder that she has diabetes.
Young people seem to find out about insulin pumps in various ways. Some are asked by their doctors to consider using an insulin pump; others looked and researched the web for alternative diabetes treatments available for type 1 diabetics; other received information about it from parents or read about it in Diabetes magazines. People also approached self help groups or found out information on social media site. (See also ‘Information about diabetes’ and ‘Online discussion groups and blogs’.)