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Type 1 Please I want your answers in regards to Insulin pumps and the access to them.

O

Olihill99

Well-Known Member
Messages
52
Type of diabetes
Type 1
Treatment type
Insulin
I’m starting a movement let’s call it… I see the wonderful cgms that are now integrating with insulin pumps like the omnipod 5 are coming into play. BUT I guarantee it’s going to be just as hard to get these ones as it is to get the standard insulin pumps, I find it disgusting I really do that type 1s have to beg for equipment like this and get told no for reasons I can not yet comprehend, the only thing I see is the nhs covering there backs when it’s comes to us making mistakes on the pump again I find it disgusting and something needs to be done. Please reply to this with your thoughts and concerns as I’m taking this to the nhs trust and to the mp in relevant areas, things needs to be made easier in my opinion.

Thank you legends.
 
I reckon its mostly to do with cost to be honest

I found a spreadsheet someone had done (about a year or two ago) on the costs for pumps and their accessories at the time, and if I remember rightly for the pump and sensors that work with it that I am on (that yes I very much did have to fight for for a long time) it was about £3000-£4000 initial cost for my pump and then £600+ a month for my supplies, in other words it is expensive and the NHS just cannot afford to fund everyone much as we would all like it
 
@Olihill99 it sounds as if you have had a personal experience.
Can you explain that more as I do not understand your comment, especially around "making mistakes on the pump, again"?

Yes, I have a pump but not closed loop and know that it is not for everyone - pumps are a complex alternative mechanism for giving insulin and they can fail.
 

Oh yes cost is a major implement into the pumps agreed but I still see no accuse in that, we pay national insurance everything is on the rise it’s not a case that the nhs can not afford to give diabetics pumps if this country and government wanted to they could easily pump abit more money in the diabeties side of things because I see little support or funding when it comes to this,I mean heck our national insurance is going up and yet people still need to wait for live saving machinery I’m 21 years so my opinions may be wrong but I just think it should be easier for support to be giving.
 

Defiantly personal I’ve been diagnosed little over a year now and wanted the pump since diagnosis I understand how much they cost and we must have rules for stuff like this , I get that but what I don’t is if there is now the cgms interaction with pumps meaning that it will inject based on your blood sugar you still have to do abit work but it’s mainly the Machine as it tests your sugars at the same time anyway if there are things like this then I hole heartedly believe people should be giving and trained on them end of some people manage the injections well, but that’s mainly a lot of people who only had injections to rely on at the time now we have technology now that can keep type 1 diabetics sugars in range even when exercising , for me money should not be even a discussion this **** should be free and it defiantly should not cost thousands and I’m in line to get the pump now but for how difficult it’s been to push for it I kind of wish I just never even knew what a pump was to be honest, I don’t see how’s it fair that other people should have to be told no just because mainly they don’t trust you to use it they care more about been sued from what I’ve been told , But to be honest it’s always about money in this word and that needs to change people should not be profiting of the pumps but believe people are making millions there stupidly over priced sorry for nay typos
 

And can I add I understand these company’s needs profit to make more pumps but people are literally getting personally rich of these devices I don’t get how that is fair should be a sole benefit to the patient and no one else
 
@Olihill99 I don't see it as the NHS/DSN not trusting you to use the pump but that they may not feel you are ready after ony a year.
Even with a closed loop, you have to carb count - injected insulin does not work fast enough. And you need to carb count much more accurately than you did with injections because there is no "spare" basal (injected basal assumes your needs are the same 24 hours a day which they are not so, typically your dose is closer to the period when your body is most hungry for basal and ,as a result, you have extra basal for other times of the day).
Plus, and this is most important for me, pumps can fail. They never fail at a convenient time and it is always stressful. When pumps fail, you have to revert to injecting. So, injecting must be second nature to be able to quickly adjust during stress.

I think you are incredibly lucky if you are a candidate for a pump only a year after diagnosis and must have show an amazing aptitude for understanding how your body works to be on the list for a pump after such a short time. Many many many people are not able to adjust that fast and understand diabetes well enough to be able to manage a pump. A pump is VERY complex. Closed loop does not do everything for you.

Whilst I agree that something needs to be done to find the budget to be able to fund insulin pumps (and the training) for more people with Type 1. I think the people who should be prioritised are those who have struggled with MDI for years.
 

Completely agree they should prioritise people but my point is that regardless of anything if you want one you should get one end of, they said at my diabetics centre that they used to just give them out and I completely understand about my injections been second nature I inject so much average 6 times a day but can be 8 just quick acting, I’m really struggling with just keeping my sugars in line and with it all to be my sugars are **** I’m never in range and I’m scared I’m damaging my body I can Inject loads without eating and my sugars just will not come down sometime
 
Olihill99 said:
my point is that regardless of anything if you want one you should get one end of
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Absolutely no way. You should not get one because you "want one".
The NHS should invest a large amount of money for a pump because you have a need and have proven you have the skills and ability ability to manage one.

Before, I had a pump, I was injecting far more than 6 times a day - most days it was 10 times. And it is not about the ability to stick a needle in you and press the plunger. What needs to be second nature is the ability to calculate the dose ... years after the last time you did it.

I sympathise with your struggles managing your levels. This is probably why you have now been told you can have a pump. But that is very very different to "wanting" one.
 

I disagree if you can provide the nhs with reason as to why you would benefit from the pump then yes you should get one this is peoples health we are talking about what is the difference between wanting and needing in this circumstance it is the same thing I want it because I know I need it and because I know it has major benefits which has been proven and sounds to be the case under your circumstance these devices can potentially save life’s and I have to wait 5 years believe me I’ve tried every ratio I stick to 1:10 because I know I’m generally save there but exercise I do not attempt because I hypo a pump would save that and exercise is the main benefit to health so think that in it’s self is a good enough reason. No you should not have to wait if you can provide reasons to why you should get one and don’t stop Till they give you it then you have a chance but there’s a lot people who not push against the nurses because they simply are anxious to disagree. I haven’t I’ve been forward with what I want from day one people need to understand how beneficial these pumps are and it should not be a complete battle to get one. But I thank you for the debate as you have added points I did not think about when it comes to there procedure so thank you and I will take it on board
 

I agree with that, my pump is a slightly older closed loop system but I still have to be very pro-active with dealing with things and have to know and have experience to deal with it.



Whilst it would be great (yes I do wish all T1's who wanted one could have one)_ - where is this money tree coming from? - I just cant see how it would be done


Note: I had been diagnosed 43 years before I got my pump, and only because MDI really could not deal with the rollercoaster activity of my blood sugars overnight (well not without me getting up about 3 times during the night - which would not leave me in a fit state for anything let alone driving to an doing my work for the next day)
 
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Hi @Olihill99 Ah I wish life was that simple and that if you wanted a pump you should get one, but as for the reasons already discussed above they are not easy to access within any CGM, there is a funding process to gain access and it all starts with a great relationship with your diabetic nurse or consultant.

Pumps are expensive and users need to present a good case for funding, each case is reviewed by the CGM board and if they feel the case meets NICE guidelines then there is a good case to get one, the process can take months, but generally no t1 get's one within a year unless they are a child. I was 6 years diagnosed before I was able to get access and it was mostly down to the fact I had built a brilliant relationship with my DSN who could see I would benefit from one, before that I didn't want to give control to a machine.

Build good relationships with your team, work at it, get on DAFNE when the opportunity presents itself, do your best and your team will help. Also are you using a half unit pen for bolusing. It helps with better dosing accuracy ?
 

Hey I really appreciate your views really helps it’s just a shame the world is revolved around money , and no I’m not what is a halve unit pen ?
 

Yeah mate get your point completely the world unfortunately revolves around money, I have a good relationship with the team I do moan but I’m quite a chatty person so I think they know I just like to voice my opinions they seem to finally giving me one but I still don’t see how other people have to struggle in my opinion something needs to be done so eventually over time they can be affordable without the nhs because I’ve tried many times to work out how much it would be to do it my self
and what’s halve unit pen mate ?
 

Yeah I agree it’s all a money game but it should be different don’t worry im not woke or a snowflake I understand the world has rules but in this case I just wish it could
Be made different for the pumps
 
Do you mean CCG?
All these acronyms are easy to be incorrectly auto-corrected .. especially when they are 3 letters starting with "C" and containing a "G"
 
In Response said:
Do you mean CCG?
All these acronyms are easy to be incorrectly auto-corrected .. especially when they are 3 letters starting with "C" and containing a "G"
Click to expand...

Thanks yes, am fixated with CGMS !
 

That's great if you get on with your team, work with them and they will look after you, they are the best people to help. The Novopen Junior is generally given to children but I got one when I was diagnosed as was only taking small doses then, ask your DSN for one.

On the whole I think alot of t1's struggle as it's a difficult condition to navigate, for me it was all about building resilience because the quicker I could bounce back then the easier it was to manage the condition, I coped ok with injecting but I just couldn't cope with the highs/lows and staying stable, tresiba basal insulin helped a great deal as getting my background right was key to getting better control. It's best to keep your mindset positive though and to do the best you can which it sounds like you are doing, the flipside is living in denial which is not a good place to be, keep at it and you will get there as your team will see how much effort you put in and will help you.
 

Thank you ! really appreciate the advice will keep the thread updated and will ask about the halve unit pen cheers
 
@Olihill99 To build on what others have said above, I think you need to remember first that not only do you need to provide evidence of motivation to use a pump, but also practical evidence that you have the skills to insert, calibrate, understand all the settings, have attended a DAFNE course, etc and do so on an ongoing basis to qualify for both a CGM and a pump. Also pump prescriptions are currently only done from hospital endocrinologists, so it is your hospital diabetes centre that you need to lobby - GPs & DSNs cannot dispense pumps to my knowledge, though their support is also useful. Sadly all CCG budgets are under severe stress, some more than others.

BTW please don't give up on exercise - have you tried weightlifting/resistance work - for most people this causes a transitory rise in BGs, but is best for building maintaining muscle.
 
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