Going private to get a pump?

Status
Not open for further replies.
CosmicOwl

CosmicOwl

Member
Relationship to Diabetes
Type 1
I really want an insulin pump but I don't exactly meet the NHS criteria for getting one. Does anyone have experience of getting a pump privately? Any information here would be so useful, an idea of costs, how to get one, how long it takes, pros and cons, do they prefer it to injecting, the support provided...the more information you can give the better, i'd really appreciate it. I'm 22 and was diagnosed last year with type 1 diabetes and I feel like my life would be so much easier and less stressful with a pump.

Thanks
 
Totally totally agree with your reasons for getting a pump. They are easier on oneself & after the first couple of weeks learning & tweaking the best up to now. sorry have no idea how you would go about getting one private but could you could ask your Dsn to which they use & the rep from Medtronic or whoever would get in touch with you. Good luck 🙂
 
I don't know much about pumps personally, but it would be worth contacting the people at INPUT - they would be able to answer all your questions 🙂

http://input.me.uk/

I believe you still have to have a pump prescribed by a consultant, even if you pay for it yourself.
 
You would need to pay privately to see a diabetes consultant on an ongoing basis, as well as self-funding the costs of pumping. The pump itself would cost in the region of £3000 (typical warranty is for four years), and consumables (reservoirs and infusion sets) could be as much as £200 a month.

Why do you think you wouldn't qualify for a pump on the NHS? The NICE criteria are that either you can't keep your Hba1c within target, OR that it is in target, but only at the expense of frequent hypoglycaemia (or the fear of it) that has a negative impact on your life. Ask your current consultant if he/she will refer you for a pump, and if the answer is no, move hospital to one that is more pro-pumping.
 
I agree with RedKite.

You should sit down with your doctors and find a way of being approved for funding....

Why would you not qualify? Is it because you are only recently diagnosed?
 
I was just going to say that - have you actually ASKED for one? You don't get if you don't ask, sometimes!

Don't think it's less work or less testing though, cos it isn't. But better results in view of the fact your BG is likely to be in a good range, for a lot more of the time than with MDI.
 
In some areas virtually everyone who asks for a pump gets one. Unbelievable, but true. And I haven't had any consultant appointments since the one where he said I could have a pump.
 
Hi guys, thanks for all the replies!

Yes I have asked and got told that I wouldn't be able to get one as I don't fit the criteria, so I might go and ask again but i'm unsure about if I want one or not now. I guess i'm still trying to get used to being diagnosed (it was such a big shock) and all the things that could be available to me so maybe I should wait until it sinks in some more before I make any more decisions.
I was diagnosed 1 and a half years ago now and I thought i'd be used to it all by now but nope, still struggling!
 
What makes you think you don't fit the bill ? Have you done a carb counting course ? That's good for everyone to get done.
 
While not a pump, around 2000 I was diagnosed with sleep apnoea and the cpap equipment was not available on the nhs as they had run out of funding. I bought my own machine, I then had to buy all the consumables and pay for the servicing.

In very recent years the nhs started giving the consumables for my machine, though still had to oay for servicing. Took the machine in for a service and it was deamed not serviceable, luckily they gave me a replacement on the nhs this time, but kept the old one.

The consumables could run around £120 to £150 at time and breakages were some times frequent.

If you go private, look into what if any thing the nhs will pay for, as they could deam going private means the nhs won't pay for any thing relating to the pump, including insulin.
 
I funded my own pump to start with.
There are no issue regarding the supply of insulin or test strips. My GP and I took on the PCT of the time for funding and they did eventually fund the consumables and a replacement pump after the 4 years.
 
You have to fight it. That's what I'm doing. I'm Type one and have been for many years. Still not used to it. But I've been looking at the NICE guidelines and I've been on INPUT, who are a charity that help support type ones getting the pump.

I've looked at goin private too, but even if you pay for the pump, you won't get all the monthly supplies on the NHS. So it's a constant stream of money needed. My NHS area won't even pay for my insulin.

Fight it. Ask to be put on a carb counting course if you haven't already. Keep accurate logs of your insulin doses, sugar readings etc. You need to show you can react to what your sugar reader says. I'm always spiking, going high then going low, but I also always act on my readings. I highly recommend the diabetik app if you use an iphone.

Keep on fighting. It costs them a lot of money so they don't like to give the pump away if they can help it. And some areas of England it's really hard to get a pump. But you can keep on trying 🙂

Best of luck. And if you want to email to share notes etc just contact me.
 
Last edited:
Yes I have asked and got told that I wouldn't be able to get one as I don't fit the criteria, so I might go and ask again but i'm unsure about if I want one or not now. I guess i'm still trying to get used to being diagnosed (it was such a big shock) and all the things that could be available to me so maybe I should wait until it sinks in some more before I make any more decisions.
Click to expand...

The simplest step you can take is to ask them exactly what the criteria is and why you don't fit it. I might be wrong but at the moment it sounds a bit like they've just said 'no' without providing any form of meaningful explanation.

Once they tell you what makes you eligible for a pump, then you've got 'em by the vulnerable bits - it will be much harder for them to deny pump access once they've given you the ground rules, because then you've pinned them down to a set position which you can work on. If all they're saying is 'you don't fit the criteria', you're allowing them the freedom to move the goalposts as they want.
 
The criteria for pump funding are as follows:

Continuous subcutaneous insulin infusion or ‘insulin pump' therapy is recommended as a possible treatment for adults with type 1 diabetes mellitus if:

  • attempts to reach target haemoglobin A1c (HbA1c) levels with multiple daily injections result in the person having ‘disabling hypoglycaemia'*, or
  • HbA1c levels have remained high (8.5% or above) with multiple daily injections (including using long-acting insulin analogues if appropriate) despite the person and/or their carer carefully trying to manage their diabetes.

*‘Disabling hypoglycaemia' is when hypoglycaemic episodes occur frequently or without warning so that the person is constantly anxious about another episode occurring, which has a negative impact on their quality of life.

NICE TA 151 http://www.nice.org.uk/guidance/TA151
Click to expand...

The only other thing you need is the support/agreement of your clinic.

Ask them to explain why they think you do not meet the criteria, and if you think that you still do (despite hearing their reasoning) then you could consider trying to find a more pump-friendly clinic.

To be clear, pumps are not for everyone and they are not a 'magic bullet'. You need to put in quite a lot of effort and attention to detail to get the best out of them. There may be good reasons why your clinic don't feel you are ready/right for a pump at the moment - but it would be good to find out what their thinking is.
 
Those guidelines are VERY disturbing:

Insulin pump therapy should only be continued in adults and children 12 years and over if there has been a sustained improvement in the control of their blood glucose levels.
Click to expand...

Children who use insulin pump therapy should have a trial of multiple daily injections when they are between the age of 12 and 18 years.
Click to expand...

What are you supposed to do if you can't get good control on a pump, what's the next option? Presumably you'd be put on a pump if you couldn't get good control on MDI...so what, if you can't get control on a pump either, it's back to the other system that also didn't work?

I wonder as well how many teenagers here on pumps have been on MDI trials?

Good link though, Mike, I'm looking through all of the guidance on everything now, it's fascinating.
 
DeusXM said:
What are you supposed to do if you can't get good control on a pump, what's the next option? Presumably you'd be put on a pump if you couldn't get good control on MDI...so what, if you can't get control on a pump either, it's back to the other system that also didn't work?

I wonder as well how many teenagers here on pumps have been on MDI trials?

QUOTE]

Seems rather unfair when hormones are raging to then try teenagers off a device that may be the best option for them given the circumstances :confused:
Click to expand...
 
Status
Not open for further replies.
Back
Top