Self funding a pump?

[aseriesofunfortunateevents]

Hey guys (sorry if this is the wrong forum),

Little bit of background: i was diagnosed on the weekend and i'm awaiting the result of the test to see if i'm type 1 or 2. I'm 30, have a bmi of 20, i'm living in London.

Now obviously I understand it is early days (i don't know if it's type 1 or 2l; i don't know how well i'll respond to treatment) but I really want to do whatever it takes to provide me the best long term outlook.

For research it seems like

• if i'm type 1 I should be able to get CGM on the NHS but trying to get a pump will be a battle.
• if i'm type 2 trying to get CGM will be a bit of a struggle and i have zero hope of getting a pump on the NHS.

However irrespective of whether i'm type 1 or 2 I want to get both CGM and a pump as i believe they will give me the best long term outlook. If it means that I have to self fund everything then i will find a way to self fund it.

Has anyone gone through the process of getting a pump self funded? Could you outline the steps for me? Do i need to start discussing this with my diabetic care team or consultant? Any advice on how I should approach the conversation?

Thanks

 

[Deleted member 527103]

Hi @aseriesofunfortunateevents sorry to read about your diagnosis but well done on being so proactive.

Regarding getting a pump - if you have type 2, it is very unlikely that you will need one as most people with type 2 do not need insulin.
If you have Type 1, a pump can be fantastic but there is a lot to learn before it can become useful rather than an annoyance. Plus pumps can fail and always at the most inconvenient time. Therefore, it is very important to be able to revert to injecting under stress. I believe these are the reasons why a pump is very very rarely provided when first diagnosed: it is an expensive piece of kit so your CCG need to be confident that you will be able to use it and have a good reason for it. Injections work very well for the majority of people with Type 1.
In the UK, you need a consultant to provide a pump - they are not sold direct to the public. If you want to self fund, that means you need to fund a private consultant as well as the pump and the continuous ongoing costs for the cannulas, cartridges, tubes, etc. which need to be changed at least every 3 days.

My advice would be to first find out what type you have. Then learn about managing diabetes with whatever medication they prescribe - it may be frustrating but you can't run and dance until you can walk.

We are all different and I can only share my personal experience. I was provided with a pump 12 years after diagnosis. I am a techy who loves maths but I found the additional brain power needed to manage a pump a steep learning curve even though I was a proficient carb counter who understood basal testing beforehand.

 

[Capt-Slog]

Hi @aseriesofunfortunateevents.
In addition to the very accurate and helpful answer from InResponse, i just want to clarify a few points from your original email about CGM's (and FGM's).

You have made a common mistake made by many newly diagnosed people who have started their exploration into the online world of diabetes.

There are three primary types of monitoring devices for diabetes.

Firstly, and most commonly, there are the finger prick blood tests made using a Blood test meter and disposable strips. These are not fun, but they are almost always what your team will want to start you with.

Secondly, there are FGM sensors.
FGM means "Flash Glucose Monitoring" .
These are the Freestyle Libre sensors. They are being rolled out quite commonly to Type2 diabetics now, but this wasnt always the case. Type 1 diabetics often get these.
Freestyle Libre 1 and 2 sensors are NOT CGM sensors, they are FGM devices.

Thirdly, is the CGM sensor.
CGM is "Continuous Glucose Monitoring". CGM sensors, like the Dexcom 6, are expensive and very few people get issued them on Prescription. Usually they are only prescribed to children and teenagers who have problems managing their blood sugar levels. The likelihood of you being issued with a prescription for a CGM is very, very low, so don't build your hopes up.

An FGM only provides a reading when you swipe the sensor with a reader or with the NFC detector built into your phone. It can provide a reading every 4 minutes. Every time you swipe you can get the last 8 hours of readings.


Conversley, a CGM sends its readings via Bluetooth, directly to your phone every few minutes.


Pump manufacturers do NOT provide people with sanctioned interfaces for FGM sensors.

Some Pump manufacturers DO provide interfaces for CGM sensors.


So, you are more likely to find yourself in the situation on being able (eventually), of getting a pump on the NHS, and an FGM on the NHS.


BUT, if you want a sensor to talk to your pump, then you will probably need to self-fund your CGM, which is about £159 a month.

Don’t even think about self funding a pump. The monthly consumables alone will make your monthly fuel bill look small.

Your CCG team may dangle the Dexcom ONE sensor under your nose, telling you that it is a CGM, which it is. However the D1 "pump interface" is switched OFF. So you cannot connect it to a pump.

I would advise you to YouTube "FGM vs CGM". It is explained a lot better than me.


Finally, Diabetes treatment is a journey and your diabetes team will not let you rush it, nor should you.
It can be very frustrating at times and you may sometimes feel that they are holding you back, but just remember that they have a lot of combined experience and they know the pitfalls of jumping in too early.

Good luck on your journey.

 

[Jaylee]

.
Freestyle Libre 1 and 2 sensors are NOT CGM sensors, they are FGM devices.

.

Hi,

I wouldn’t disagree on the above. However there are a couple of great third party phone apps that can give the Libre 2 user a “CGM experience” with updates every five minutes on the lock & home screen & customisable alarms too.?
I use the Diabox app for this purpose. (In conjunction with an MDI regime.)

 

[Antje77]

Now obviously I understand it is early days (i don't know if it's type 1 or 2l; i don't know how well i'll respond to treatment) but I really want to do whatever it takes to provide me the best long term outlook.

It's very early days for you yet, at only two days in.
While I'm sure you did more reading in those days than you usually do in a month (at least that's what I did, and it served me well), may I ask why you feel so strongly that an insulin pump will give you the best long term outlook?
Yes, for many it does, but there are also many who prefer injections over pumps.

The best long term outlook with diabetes means blood glucose as stable as you can get it, without sacrificing your mental health.
For some, this is perfectly doable on pens instead of a pump. I'm one of them and I don't want a pump, funded or not.
Not saying pens are better, just saying that it takes time to work out what is best for you, two days is really too short.
I also agree with @In Response that knowing how to manage on pens is very important in case of a pump fail.

Now getting a CGM or Libre as soon as possible, that's one I wholeheartedly agree with, they're wonderful tools for spotting trends. But be aware of it's shortcomings should you start one, and don't fully trust it without the occasional fingerprick.

 

[RoughcutAU]

Second the give pens a try. 12mths in and I wouldn’t trade pens for a pump even if I could afford it. Though at the start my goal as yours was to get all the “cool” tech. I am currently on my way right now to get my first FGM Libre 2. Excited and apprehensive.

Lol @ the reading more in 2 days then in a month comment. I think thats something alot of us do - myself included.

 

[Deleted member 527103]

@Capt-Slog, I don’t want to derail this thread but I do want to correct a few points about Libre.
Libre 2 sensor are CGMs. The sensor send data every few minutes to your phone (or reader) via Bluetooth which it will use it to decide whether to alarm or not. The LibreLink app or Libre reader is the bit that is not a CGM. However, Libre is used by many people as a CGM with apps such as Diabox and xDrip.
Apps like these can be linked to pumps to make them closed loop systems. Sure they do not talk directly to pumps but the value is not the direct comms but the ability for a pump to automatically respond to data collected by the sensor.
This is not diabetes management or even pumping for a beginner but it is all possible with DIY looping.

And, CGMs that officially talk to pumps are definitely available for less than £159 a month. Mine costs about half of that.

 

[aseriesofunfortunateevents]

Thanks for everyone's replies and I definitely agree with the "walk before you run" sentiment.

I know I still have a lot to learn but the basic reasoning behind wanting a pump was that it seemed to be a system that would most accurately replicate the behaviour of a functioning pancreas. I.e. dispense insulin as and when i need it. If i'm dispensing insulin myself i'm unlikely to be able to as accurately and timely deliver the insulin.

 

[EllieM]

If i'm dispensing insulin myself i'm unlikely to be able to as accurately and timely deliver the insulin.

I think it's probably true that you get more flexibility in insulin distribution with a pump, but there are cons to go with that pro. The time profile of exogenous insulin is not the same as endogenous insulin so you can't mimic a pancreas exactly, even with a pump.

I think if you learn how to do basal bolus first you'll then have better theoretical knowledge to learn how to use your pump, and as pumps do fail occasionally, you need that knowledge anyway. But diabetic technology in general has improved massively in the last decade, so the future is bright for younger diabetics such as yourself.

Hopefully you'll get those test results soon, and be able to step forward with a definite diagnosis.

 

[Antje77]

the basic reasoning behind wanting a pump was that it seemed to be a system that would most accurately replicate the behaviour of a functioning pancreas. I.e. dispense insulin as and when i need it.

You'll need to tell the pump the exact amount of carbs you'll be eating, it's not yet a completely hands off system. The pump needs to be told your different insulin to carbs ratios throughout the day, on sick days, on active and lazy days, and you'll have to find those ratios first. And they'll change over time and sometimes unpredictably too, meaning your pump setting will have to be adjusted as well.

Some pumps can help with this, by increasing or decreasing insulin automatically depending on your BG, which is a very helpful feature. And some people use a (semi-) closed loop system where quite a lot is handled by the pump itself, and it looks like those systems will get better in the future. But we're not there yet.