Injecting 7 times a day....how do I self fund a pump

[jess23]

My boyfriend was recently diagnosed with type 1 diabetes 18 months ago he is now 22 so well over the 12 year old age set by NICE. His main problem is the unpredictability of his insulin injections depending on the site used to inject. He has a low body fat % and therefore struggles to find places to inject. The best place is his stomach but having gained scarring even this is now far less responsive to insulin. This is meaning he is injecting anything up to 7 times a day and has some very high readings of over 20 in the past few months.
I'm convinced that a pump would help him but am aware he probably wouldn't get one on the NHS. What are the options and how would we go about self funding a pump and or CGM delive?
Lots of websites say it is possible to self fund but none detail how to go about starting this process.
Thank you in advance for your response

 

[dtennant9]

hello @jess23 and welcome to the forum.

I would imagine it would be very expensive to self fund a pump and I'm unsure what the NHS opinion of this is.

Your looking at £2500-£3000 for the pump alone then you have all your consumables on top of that which will be a regular cost.

Have you asked at his clinic about the possibility of going on a pump.

I wouldn't say I fit the usual criteria for a pump but I made a case for it and was approved.

I was also doing 6-8 injections in a day so I felt moving to a pump would make things easier.

A pump is not a magic cure though and is a lot more work than MDI. I have been on my pump for 3 and half weeks and am nowhere near having it all setup correctly. I had seen people post before that a pump was hard work but didn't realise how hard it would be. On the upside I've not done an injection for over 3 weeks.

I hope it all works out for you and do update us with your progress.

 

[CollieBoy]

My boyfriend was recently diagnosed with type 1 diabetes 18 months ago he is now 22 so well over the 12 year old age set by NICE. His main problem is the unpredictability of his insulin injections depending on the site used to inject. He has a low body fat % and therefore struggles to find places to inject. The best place is his stomach but having gained scarring even this is now far less responsive to insulin. This is meaning he is injecting anything up to 7 times a day and has some very high readings of over 20 in the past few months.
I'm convinced that a pump would help him but am aware he probably wouldn't get one on the NHS. What are the options and how would we go about self funding a pump and or CGM delive?
Lots of websites say it is possible to self fund but none detail how to go about starting this process.
Thank you in advance for your response

Have you contacted INPUT for assistance on getting a pump? http://www.inputdiabetes.org.uk

 

[jess23]

Yes have just written an email to input so hopefully they offer some advice.

Sorry we're both quite new to this as the fb was only diagnosed 18 months ago at 22 so quite old for a type 1.

Is it likely that a pump (once he's got the hang of it) would help with unreliability of injection sites because that's really the problem. Despite counting carbs and tracking the insulin required levels post food can still be 4 or 24

 

[dtennant9]

Yes have just written an email to input so hopefully they offer some advice.

Sorry we're both quite new to this as the fb was only diagnosed 18 months ago at 22 so quite old for a type 1.

Is it likely that a pump (once he's got the hang of it) would help with unreliability of injection sites because that's really the problem. Despite counting carbs and tracking the insulin required levels post food can still be 4 or 24

You would still need to find areas which are going to work for him.

If there are areas with scarring then this might still be an issue. If it is because he has low body fat you can get infusion sets which go in at an angle as opposed to 90 degrees.

People are diagnosed with Type 1 at all different ages. I was 28 when I was diagnosed.

 

[CarbsRok]

My boyfriend was recently diagnosed with type 1 diabetes 18 months ago he is now 22 so well over the 12 year old age set by NICE. His main problem is the unpredictability of his insulin injections depending on the site used to inject. He has a low body fat % and therefore struggles to find places to inject. The best place is his stomach but having gained scarring even this is now far less responsive to insulin. This is meaning he is injecting anything up to 7 times a day and has some very high readings of over 20 in the past few months.
I'm convinced that a pump would help him but am aware he probably wouldn't get one on the NHS. What are the options and how would we go about self funding a pump and or CGM delive?
Lots of websites say it is possible to self fund but none detail how to go about starting this process.
Thank you in advance for your response

Hi Jess, no idea where the idea of only having a pump if aged under 12 came from. I think you have misread or misunderstood the guidelines.
Your boy friend needs to be able to carb count understand how different foods affect his blood sugars and test his blood sugars at least 6 times a day on MDI and also then prove what he is doing is not controlling his diabetes.

To self fund a pump though is very expensive. You also need to have a prescription for one, they cost about £2000, plus roughly £120/month for consumables.
CGM can be bought without a prescription though.

 

[jess23]

Sorry badly written I do understand that it is possible to get one if you are over 12 but seems a lot harder.

Consultant at the hospital told us the best way to get one was to hypo and end up in hospital several times so perhaps our trust is stricter than others with its interpretations of the guidelines.

 

[novorapidboi26]

what size of needles is he using?

having a low body fat, I would presume he is not on very high doses, would that be right.........

what training has he had in terms of dose adjustment......?

its quite possible to get a pump so don't give up hope....?

do you think a pump would resolve the suspected absorption issues?

 

[coralkay12]

Me and my boyfriend are having the same problem myself is a type 1 diabetic and I've wen diabetic for 3 years now and still trying to get a pump I went on this course calle DAFNE and it was great but I'm still having no luck with my boyfriend offered to pay for a pump but it will cost up to 120 pound a week just to pay for the rest of the stuff he needs to prove himself to his diabetic team that he can control it and they might move on from there xx

 

[CarbsRok]

Sorry badly written I do understand that it is possible to get one if you are over 12 but seems a lot harder.

Consultant at the hospital told us the best way to get one was to hypo and end up in hospital several times so perhaps our trust is stricter than others with its interpretations of the guidelines.

If he does that then he will lose his driving licence.
Your BF needs to change hospitals pretty darn quick.
Unfortunately nothing is handed out on a plate so your BF needs to earn his pump. This includes jumping through a lot of hoops
Invest in a couple of books called using insulin and think like a pancreas both can be found on amazon. These will give your BF a good understanding of what he needs to be doing.
Does your BF ever do any basal testing? Has he checked his carb ratios are correct, does he know his correction factor for different times of the day?
Your BF also needs to ask and get in writing, what he needs to do to get a pump. But if he was told to hypo so badly he needed to end up in hospital and endanger his life by doing so then this needs to be reported and also a change of care team is needed.

 

[CarbsRok]

Me and my boyfriend are having the same problem myself is a type 1 diabetic and I've wen diabetic for 3 years now and still trying to get a pump I went on this course calle DAFNE and it was great but I'm still having no luck with my boyfriend offered to pay for a pump but it will cost up to 120 pound a week just to pay for the rest of the stuff he needs to prove himself to his diabetic team that he can control it and they might move on from there xx

The cost for the consumables is about £120 per month not a week.

 

[coralkay12]

Sorry I might of got it wrong but it's still expensive x

 

[CarbsRok]

Sorry I might of got it wrong but it's still expensive x

Oh I quite agree it's very expensive, I used to self found so know what a hole it leaves in ones pocket

 

[Daibell]

Hi. Can I also ask what size needle your boyfriend is using? As others have said, T1 can occur at any age and I've read of one person who was diagnosed T1 at age 90! My nephew was 22 when diagnosed. It sounds like a pump might be a good solution as 7 injections per day is a real problem. Has your boyfriened discussed changing insulin types with the GP? Some people find changing insulin types can have a big effect.

 

[noblehead]

Yes have just written an email to input so hopefully they offer some advice.

Sorry we're both quite new to this as the fb was only diagnosed 18 months ago at 22 so quite old for a type 1.

Is it likely that a pump (once he's got the hang of it) would help with unreliability of injection sites because that's really the problem. Despite counting carbs and tracking the insulin required levels post food can still be 4 or 24

Provided he and his diabetes team have explored all avenues his consultant can make a case for a pump based on quality of life, the time that someone has been diagnosed doesn't seem to be a concern as such now as it once did, as we have members on the forum change to pump therapy after being diagnosed a similar length of time to your boyfriend.

I've been diagnosed 33 years and have had injection site problems in the past and more so recently which have been problematic, therefore after reviewing matters with my diabetes team they consider that a pump is my best option, I'm still waiting for the official approval but hopefully I'll be given the go-ahead sometime early in 2015.

 

[jess23]

Thanks for the book recommendations I will get him both for Christmas! As it sounds like we have a lot more we could be doing.

Currently only tracking carbs vs insulin taken vs blood sugar. Not certain on needle size but I think they are the 4mm at the moment.

Part of the problem has been since being diagnosed he has been between reading Warwick and Manchester due to uni and then work.

Is there anyone who has found travel means it's hard to continue to see the same clinic and any advice on this?

 

[Juicyj]

Hi there - I am looking to see my consultant next week and am looking to get a pump. I've been told by my diabetic nurse that part of the criteria for being assessed is that you have to attend DAFNE first, so I would suggest he goes forward for this course first. Once a type 1 has done the course and is still seen to be taking care of their condition and managing it to the best of their ability but not achieving the best results then you can be placed into the queue for an assessment. I am open minded to the prospect of a pump, yay if I get it and no worries if I don't. So not too optimistic !! I have ruled out the idea of buying one as I really cannot afford to, however I do think over time it will help me to get better control.

Whilst being assessed it can still take a further 6 months before a decision is given. So even on the NHS the process is very slow - may be different dependent on which area you are in, but I think what i'm trying to say, is that if he does go down this route it could still take a long time.

It may be wise to address the current issues/challenges he faces and see if better results can be achieved whilst this process happens.

Good luck

 

[polka]

So, reading this thread a pump is the preferable option for a lot of type1 diabetics then?

My specialist keeps telling me to go on an insulin pump, but I say no as i feel more in control with injections, maybe i should rethink it.

 

[donnellysdogs]

First off, many CCG's & hospitals are putting children on pumps as a priority. Our CCG prioritises children under the age of 12 now should be given a pump as an option. My hospital has offered all children pumps that want one.

I too have very little body fat, and have used my bum cheeks for nigh on 30 years of injections. So has he tried his bum cheeks? This is not a site normally suggested by DSN's as it is seen as a slower absorption than stomachs. Have you actually been told its scarring, as that is pretty quick to get scarring for tissue.

Are you 100% sure that it isn't just because your BF is not on a correct basal insulin.. ? Some last longer than others in the body...

When are the higher levels? Are they after food?

Is he getting any hypo's??

What are levels like over night?

You do not necessarily have to been on DAPHNE. I didn't and I got a pump, but mine was due to a driving incident and I got my pump within a month.

Daphne is a good course to teach you about adjusting doses etc and carb counting but there are good courses on line too.

There is a criteria from NICE that you have to meet.. Ie tried everything to get levels stable... Ie more injections, different timings of insulins and having hypo's etc. if your BF meets that criteria and has tried everything then he should ask for a pump to be funded.

Also if you can self fund a pump then you may not get the back up or training from the hospital. I believe that you would still need a consultant to state to the pump company that you need one though....obviously the pump company needs to have proof that you are diabetic and that you would be anle to manage it without doing anything stupid that they could be sued for.. This is why they would want an official signature of needing one. Unlikely that you would be able to get any further assistance from nhs though if you did.

You need to be able to state the NICE guidines and to clearly say why BF needs one.

 

[PaulinaB]

If you're up to spending money,I'd go for a CGM: you don't need a prescription and its cheaper than a pump (not cheap, but cheaper). It won't solve his absorption issues, but may give a lot of insight into his bg.

For an even cheaper option - look into Freestyle libre. There's a very long thread here on the forum about it. It gives you similar information as a cgm, but without high/low alerts and you have to scan the sensor to get the info.