Successful Diabetes

Successful Diabetes

Pump Websites and Support

There are many different websites available that can provide information, support and practical tips in a variety of ways. This section gives you some ideas on where to get started to find the type of information you need. Information about currently available pumps in the UK can be found through some of the websites below, where indicated.

Diabetes UK, the national charity for diabetes, has a very helpful insulin pump section with comprehensive information:

www.diabetes.org.uk/Guide-to-diabetes/Treatments/Insulin/Insulin-pumps/

There, you will find a short summary of what pump therapy is, answers to common questions, information about pump use in the UK, and details of the pumps currently available in the UK together with their manufacturers and website details. Diabetes UK also have a position statement on insulin pump therapy.

NICE, the National Institute for Health and Clinical Excellence, provides guidance to the NHS on the use of insulin pumps: Diabetes - insulin pump therapy (TA151)

http://www.nice.org.uk/nicemedia/live/12014/41300/41300.pdf

Published in 2008, this guidance outlines the circumstances when insulin pumps should be provided by the NHS, based on disabling hypoglycaemia and ongoing uncontrolled blood glucose levels. Children under 12 can access pump therapy more easily - see the section on children and young people for more information.

INPUT, is a UK registered charity, set up and run by people with diabetes. It provides a vast amount of information on insulin pumps

www.inputdiabetes.org.uk

INPUT helps people in the UK have better access to pump therapy, so includes information on funding and what to do if you are having difficulty obtaining a pump. The website is also full of lots of other information, ranging from basic pump information to useful technologies like continuous glucose monitoring (CGM) and funding for this, plus access to sufficient testing strips. There are links to a huge range of other sources of information, including parliamentary debates, blogs, useful resources, apps and much more. The organisation's staff are pump users and make every effort to include any useful information they come across in relation to pump therapy and diabetes.

Insulin Pumpers UK, an independent organisation set up to help people with diabetes, and run by volunteers.

http://www.insulin-pumpers.org.uk/

Insulin Pumpers UK provides information about pumps, including lots of useful anecdotal stories from pump users themselves. The main focus of this organisation is to provide opportunities to enrol and have email discussions with others using pump therapy.

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Getting Started with a Pump

It's good to know the facts about anything new, and starting to use an insulin pump is no exception. The way that pump services are set up is very different from one diabetes team to another, so not everything here will apply in every case. This section takes you through the main things to expect.

Getting access to pump therapy

There is still variable access to pump therapy between different diabetes teams. In some teams, there will be very specific guidelines about the stage at which a pump should be considered. In others, it will be more subjective, and rely on your health professional's judgement. And in others still, pumps may only be used as a last resort and would be unlikely to be suggested as a routine treatment option. This variation is partly based on how experienced and confident different diabetes teams are in using pump therapy proactively, and partly on how local funding systems work. Whatever the case, if you are interested in using a pump, it is worth starting the conversation and seeing what the local situation is. You can also access information, help and ideas if you need them, particularly if you feel that you would benefit from using a pump but do not feel you are getting the local support and help you need.

Before getting your pump

You would be assessed to see how suitable pump therapy would be for you. Part of this is based on what is happening with your diabetes, for example if you have blood glucose levels that vary wildly and are extremely difficult to predict, or if you have low blood glucose levels with no warning. Part of the assessment is also about what benefits you would get from a pump, which may include stopping your diabetes getting in the way of sport, physical activity or work. It is also important that your own ability to cope with a pump is assessed, such as having the physical capability to manage a pump and also whether you will cope psychologically, particularly in the early days. Generally these are not formal assessments, although in some areas in the country they may be more formalised. It’s very likely that the assessments are carried out by the 'pump experts' in your diabetes teams, who are used to helping people get to grips with using a pump.

Other preparation

You may also be asked to attend local diabetes education programmes, particularly if you have not previously been calculating the amount of carbohydrate you eat. For some, just attending these programmes mean that they learn enough to be in better control of their diabetes and they decide they don't need a pump after all. And even if you are already counting carbohydrates, you may still be asked to have a refresher to make sure that you have the carbohydrate aspect really clear in your mind.

Choice of pump

Once it has been agreed that you have a pump, you may be given a choice of different types of pump - this doesn't happen everywhere, particularly in areas where specific contracts exist with pump companies, and also your own diabetes teams may feel more comfortable using certain types of pumps based on their own experiences. You may have an opportunity to take a pump away with you for a few days to get used to how it works and what the different functions are, and you may also get the opportunity to meet other people already using a pump to chat about their experiences.

Day one of pump therapy

The next step, of course, is to start using your pump. You may be asked to attend group sessions with others starting out, or you may be given an individual appointment. In some areas, you will be asked to use saline solution for 24 hours to get used to the button-pressing, or alternatively you will start using insulin in your pump straight away. You will need to make some adjustments to your existing insulin in the 24 hours before you start using your pump, to avoid too much overlap between your injected insulin and your pump insulin - your diabetes team will help you work out what doses will work the best for you.

Learning the practicalities

Practicalities include aspects such as where and how to insert your cannula, how to set up your pump, how to care for your equipment and your infusion sites, and how to troubleshoot if you suspect something isn't right. You may get information about these before the actual day you start using a pump, but even if that happens, it's easy to forget when you are under stress! You may want to develop some resources of your own, to help you remember, particularly the aspects you find difficult. It is also good know how to contact people if you get stuck - which may include your diabetes team, the pump manufacturing company, and other pump users. There may be useful internet sites as well that can help in a crisis.

Setting continuous insulin doses

To get going with your pump, you will need to set your hourly insulin doses - this is known as the 'basal rate'. Your diabetes team will help you with this, and are likely to have a standard way of calculating it. As a starting point, it is generally based on what has been happening with your diabetes so far - how much insulin you have been taking by injection, how frequently you have hypos or low blood glucose levels, and your overall diabetes control. It is also an estimate - so enough to get you started, but unlikely to be the perfect insulin dose for you. It is easiest to start with slightly lower doses than you will need, because that will help you avoid hypos in the first few days, and the dose can easily be adjusted as your blood glucose pattern starts to emerge. You will rely pretty heavily on your blood glucose readings to work out what to do with your insulin doses, and your diabetes team might advise you to reduce your testing if they think you are overdoing it - sometimes testing too frequently, before you have seen the full effect of the food you have eaten or the boluses of insulin you have given, will give a false picture and might mean that you take action that is unnecessary. The first few days can be frustrating - you have a new tool to manage your diabetes, but you are being 'held back' from using it fully! But it is all about taking it slowly - both you and your body are adjusting to a completely different way of managing your diabetes, and seeing these days as an opportunity to sit back and look properly at your diabetes, and make gradual changes to sort things out, is generally more helpful than constant fiddling that can result in your blood glucose levels swinging up and down a lot more.

Additional insulin doses

You will of course need to give extra doses of insulin, known as boluses, either what is known as a 'food bolus' to match the carbohydrate you are eating, or a 'correction bolus' to counteract a high blood glucose level. You may already have ratios you use, but if not, you will need to learn how much insulin matches how much carbohydrate for you personally, and also how much your blood glucose will drop for each additional unit of insulin you take. Don't worry if you are new to this - your health professional will be able to 'hold your hand' and work with you to find out what the best numbers will be for you to use. Many of the pumps come with 'bolus wizards' which can help suggest bolus amounts when you input the information they require - see the separate section for more information on these - but you will still need some personal ratios.

Ongoing support

Local services vary a lot in how they provide support - some will be able to offer you a 24 hour telephone advice service, and all should ensure that if you run into problems and can't get immediate answers, you have the ability to swap back to injection therapy for short periods. Also, over the first few weeks you are likely to have fairly frequent contact with your diabetes team. It can feel a little strange going back to being a novice with managing your diabetes, but it won't be long before you get confident in managing the basics - then it's just a case of deciding when you want to step off into the 'deep end' of experimenting with different pump settings!

We hope that has helped you grasp what services will be available for you when you are first starting to out with your insulin pump. Good luck!

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The Basics of Insulin Pump Therapy

nsulin pump therapy is becoming an increasingly popular option, mainly in treating Type 1 diabetes. This is because of the complete lack of insulin in this condition, meaning that calculations of insulin doses can be made with relative certainty, whereas in Type 2 diabetes, the factors of some ongoing insulin production plus potentially insulin resistance make these calculations less certain. This doesn't mean that insulin pumps can't be used in Type 2 diabetes, but their main use currently, and for the foreseeable future, is in Type 1 diabetes. Figures from 2010, shown on the INPUT website (see our 'pump websites and support' section), that around 8% of children and 2% of adults with Type 1 diabetes use insulin pumps.

Different models of pumps As technology increases, the types of insulin pumps available are becoming more sophisticated. Wireless models are being introduced, touchscreen technology is being used, and connections between pumps and blood glucose monitors are being made. Visiting the websites of the pump manufacturers and suppliers will help you find out about the current models available - see our 'pump websites and support' section for more information.

Why is pump therapy becoming more popular? In essence, it is a way of replacing someone's insulin production in a way that is fairly close to how they would produce their own insulin. That is, a pump delivers a small continuous supply of insulin which alters through the day according to individual requirements, plus extra doses (boluses) of insulin to match what carbohydrate is being eaten. In addition, all the insulin used in a pump is rapid-acting, so the potential variability of its release is taken away. Even the most sophisticated ‘conventional’ injection regimen, with one or two long-acting doses of insulin and 3 or more rapid-acting injections per day, is still quite a clumsy system by comparison, and also includes the use of insulin which has been manufactured to deliberately release more slowly to try and cover the times between injections.

And the downside?... Insulin pump therapy is not a perfect solution. It requires a lot of work during the set-up period, to learn what insulin-to-carbohydrate ratios and correction ratios work best, to identify which parts of the day need more or less insulin, and to find the best insulin doses for different activities and social situations. The intensity of the work needed to get the most from pump therapy does reduce after the first few weeks - or some would say it takes about 6 months to really get to grips with using a pump - but even then, there is still a considerable amount of work involved to keep on top of blood glucose levels, and even with this work, some people never achieve the exact results they hope for. It's not easy to identify whether this is more work than anyone would do than if they were taking multiple injections - people who have had an insulin pump for a year or more will probably say it's less work, but that might be because the more work you put in with a pump, the more you get out of it - whereas sometimes, even with hard work, multiple injection therapy still doesn't always give the results that it should!

The stigma of using a pump? Another aspect to think about is having something attached 24 hours a day - this really doesn't bother some people, but for those it does, it can be a major barrier, and for some, it can be the deciding factor regarding whether they start to use a pump or not. It can feel like an invasion of personal space, a visible signal of having diabetes, a distortion of body image, or simply something that isn't wanted. Pumps are getting cleverer - many of them are now wireless, with a small insulin reservoir and a separate handset for programming, so they look much less like medical devices. Plus, it has become a normal sight for people to be using hand-held devices such as mobile phones, so programming an insulin pump attracts much less attention than it used to. But it is still not possible to get away from the fact that a pump is worn 24 hours a day.

A summary of the facts:

  • An insulin pump is worn 24 hours a day
  • It is not a fix-it solution - so far, it is unable to make decisions for people about how much insulin to deliver
  • It can deliver small, precise insulin doses continuously
  • Additional doses can be programmed on demand
  • The continuous dose can be fine-tuned to someone's needs
  • Frequent blood glucose monitoring, good carbohydrate assessment and adjustment of the pump settings are needed for the best results
  • The person using the pump (or their parent/carer) has to learn how to programme it to get the best out of it
  • It's an option, alongside different insulin regimens, in the 'diabetes toolkit' - it's not for everyone
  • If the pump doesn't work for someone, it is ok to go back to injections
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