Currently on injections

[xItzPixi]

Hi I am diabetic of 25 years, I have multiple insulin injections daily between 6-8 in total. The hospital diabetes team is no use to me sadly and I don’t have contact with them, its been 14 months since I last saw them, and that appointment was post natal. If I hadn’t of been pregnant I probably would not have had a face to face appointment until since before covid. Im in my late 30s now and have had my children and can not fault the pregnancy diabetic care team. But once your not pregnant I am in the forgotten category of diabetics. Im hoping it is just my local hospital and not a case nationally for everybody. Whenever I queried a pump they told me I would not get granted funding as my control in their eyes was fine and they always told me “Insulin pumps are hard work bla bla” everyone I have spoken to having a pump have said it has made their diabetic life much better. Anyway I want to move to omni pod for my quality of life, I don’t want to go through the rest of my life thinking I wish I tried an insulin pump, I don’t want to remain on injections they get me down and im tired of remaining in the past of diabetic treatments. So I am considering self funding option, so im wondering on prices each month etc, and lack of support from local diabetic team is this private funding something that can be arranged and liased with gp etc

 

[Inka]

Welcome @xltzPixi 🙂 You might like this recent thread:

W

Thread 'Pump .. is it worth funding privately?'

Feb 10, 2025

Having been told today by my DSN that the waiting list for a pump is up to 5 years, I am considering buying privately. I am currently half way through 1 year of immunotherapy treatment for melanoma which has totally screwed my endocrine system and I am now T1D. I don't think my mental health can cope with that wait. Does anybody know if I will retain access to NHS services or will I have to then do everything private? I can't afford to go down a full on private route, but could maybe figure out a way to buy a pump.

• Wanda62
• Replies: 12
• Forum: Pumping and Technology

• 
• 

A pump is hard work. I’ve had one for more than 20 years and I take breaks from it for a rest. Sadly, there’s no easy answer to Type 1.

Have you looked at the pump criteria to see if you qualify? Could you change hospitals?

 

[mashedupmatt]

@Inka beat me to it! This has been discussed on another thread this week as per her post - welcome to the forum @xItzPixi - my "control" (I don't like that phrase, I prefer "management") is also deemed too good, which is frustrating as I'd like to at least try it (I'm sure it would help with my sporting exploits for example) - there are other considerations other than just your HbA1c though so have a look through the NICE Guidelines and see if you can approach things from a different angle (that's what I'm intending to do on my next appointment)

 

[xItzPixi]

@Inka beat me to it! This has been discussed on another thread this week as per her post - welcome to the forum @xItzPixi - my "control" (I don't like that phrase, I prefer "management") is also deemed too good, which is frustrating as I'd like to at least try it (I'm sure it would help with my sporting exploits for example) - there are other considerations other than just your HbA1c though so have a look through the NICE Guidelines and see if you can approach things from a different angle (that's what I'm intending to do on my next appointment)

Thanks so much for your kind replies. Im a bit like do I bother at my age? But then im like yes ofcourse I do, I deserve to try these things just as much as the next person. But I am happy to fund it myself this isn’t too much of an issue for me. Just unsure how to go about it, as I don’t have much contact and certainly no appointments with my diabetes specialist.

 

[mashedupmatt]

I deserve to try these things just as much as the next person

Agree with this sentiment 100% - Managing diabetes (whatever type) is a constant struggle and I think being penalised for having good "numbers" is unfair - it doesn't take into account the mental aspect and the impact that has on your quality of life - it would be very pricey to self fund though (this is from the NICE guidelines (or not-so-nice depending on your viewpoint!):

 

[nonethewiser]

Hi I am diabetic of 25 years, I have multiple insulin injections daily between 6-8 in total. The hospital diabetes team is no use to me sadly and I don’t have contact with them, its been 14 months since I last saw them, and that appointment was post natal. If I hadn’t of been pregnant I probably would not have had a face to face appointment until since before covid. Im in my late 30s now and have had my children and can not fault the pregnancy diabetic care team. But once your not pregnant I am in the forgotten category of diabetics. Im hoping it is just my local hospital and not a case nationally for everybody. Whenever I queried a pump they told me I would not get granted funding as my control in their eyes was fine and they always told me “Insulin pumps are hard work bla bla” everyone I have spoken to having a pump have said it has made their diabetic life much better. Anyway I want to move to omni pod for my quality of life, I don’t want to go through the rest of my life thinking I wish I tried an insulin pump, I don’t want to remain on injections they get me down and im tired of remaining in the past of diabetic treatments. So I am considering self funding option, so im wondering on prices each month etc, and lack of support from local diabetic team is this private funding something that can be arranged and liased with gp etc

Taking your upper limit 8 injections a day is a fair few especially if your fed up with injecting, this alone is detrimental to your mental wellbeing.

Tbh your team saying pumps are hard work is a bit of a cop out if you ask me, for some it can be but for others they are life changing making everyday management of diabetes that little bit easier, much like cgm does.

Maybe discuss with your GP if its possible to be referred to another hospital who are more pro pump, or charity DUK might help or suggest something if you contact them. Thing is you shouldn't just be denied a pump just because your control is good when there's other factors at play, as in your circumstances.

 

[Bruce Stephens]

Anyway I want to move to omni pod for my quality of life, I don’t want to go through the rest of my life thinking I wish I tried an insulin pump, I don’t want to remain on injections they get me down and im tired of remaining in the past of diabetic treatments.

Breakthrough T1D (formerly JDRF) has some pages on this. Ultimately you will need to persuade a hospital team to be on your side, so check the criteria (whether it's TA151 or TA943) and see how you can squeeze your problems into the listed criteria. That should make it easier for them to support you. (As @everydayupsanddowns has said, it's very hard to disprove fear of hypos. Though nowadays CGMs perhaps make that less true.)

My GP has always been fine referring me to the hospital if I want (though that'll normally just involve seeing a DSN, quite possibly in the GP surgery). If you need some reason, just saying that you feel you're injecting rather often each day and you're finding that problematic seems like a good enough reason to me.

Guide to type 1 diabetes technology | Breakthrough T1D UK

Our guide to type 1 diabetes technology gives you information about insulin and the different ways to get it into your body.

breakthrought1d.org.uk

 

[xItzPixi]

Taking your upper limit 8 injections a day is a fair few especially if your fed up with injecting, this alone is detrimental to your mental wellbeing.

Tbh your team saying pumps are hard work is a bit of a cop out if you ask me, for some it can be but for others they are life changing making everyday management of diabetes that little bit easier, much like cgm does.

Maybe discuss with your GP if its possible to be referred to another hospital who are more pro pump, or charity DUK might help or suggest something if you contact them. Thing is you shouldn't just be denied a pump just because your control is good when there's other factors at play, as in your circumstances.

Thanks very much for your reply. I feel like it is more convenient for them to have me remain on multiple daily injections. I have actually just reached out to DUK, so Im hoping they can help me somehow.
Also do you think it would be helpful to start a complaint via pals through my local hospital regarding how I feel with the diabetes team. Or would this just make everything worse?

 

[Inka]

Thanks very much for your reply. I feel like it is more convenient for them to have me remain on multiple daily injections. I have actually just reached out to DUK, so Im hoping they can help me somehow.
Also do you think it would be helpful to start a complaint via pals through my local hospital regarding how I feel with the diabetes team. Or would this just make everything worse?

I’d try laying out your thoughts/evidence in writing first. That is, describe why you want a pump and, importantly, how it will improve things for you. Describe any problems you’re having, what you’ve tried to solve them, and how a pump would help.

 

[xItzPixi]

I’d try laying out your thoughts/evidence in writing first. That is, describe why you want a pump and, importantly, how it will improve things for you. Describe any problems you’re having, what you’ve tried to solve them, and how a pump would help.

Thanks, I don’t have access to emails to contact anybody at the hospital. There is only a nurse helpline and in my experience they have always been unhelpful and seem rude. So am ai best doing this to the pals team so therefore I will have it all down on writing?

 

[nonethewiser]

Thanks very much for your reply. I feel like it is more convenient for them to have me remain on multiple daily injections. I have actually just reached out to DUK, so Im hoping they can help me somehow.
Also do you think it would be helpful to start a complaint via pals through my local hospital regarding how I feel with the diabetes team. Or would this just make everything worse?

Nothing ventured, nothing gained. In your position I would definitely contact pals.

 

[Inka]

Thanks, I don’t have access to emails to contact anybody at the hospital. There is only a nurse helpline and in my experience they have always been unhelpful and seem rude. So am ai best doing this to the pals team so therefore I will have it all down on writing?

Yes, write them a letter and keep a copy for yourself. That’s the first step I’d take.

 

[helli]

I have a few thoughts in no particular order
- 14 months between hospital appointments is not a long time. My clinic has so many patients that my appointments have become about 18 months apart. That does not mean they shouldn't be annual.
- "better" diabetes management with a pump does not mean "easier" management. It definitely takes soem investment of your time and brain power to get the most out of a pump. I love mine and would hate to go back to injecting but I probably spend more time managing my diabetes what with adjusting my basal (I am not on HCL), working out whether to use extended, combo or normal bolus, suspending my basal or putting a temporary basal on and, of course changing it.
- I would not recommend setting your heart on a specific pump. OmniPod may not be available in your clinic, it may not have the features you need - there is more than tubes to think about. And if you really need a tubeless pump, there are others available. I recommend keeping an open mind to which pump you want until you have convinced your team you need a pump.
- I agree that pumps should be offered to more people and being told our diabetes management is "too good" feels as if we are being penalised for looking after ourselves. This is why we need to be more creative about why we need one. Think about why injecting is getting you down - is it the number of times you do it (I bolus far more often now I have a pump)? Do your basal needs vary greatly during the day such as having a very dominant Dawn Phenomenon? Do you need smaller insulin doses? Are you having or fearful of having too many hypos?
- My diabetes clinic has a web page on the hospital web site. This page includes phone numbers and email addresses for the clinic and the consultants. It is worth checking and trying to contact them if only to copy them on the letter you send to PALS.
- Is there another diabetes clinic you could ask for a referral to? It is worth trying to fond out of they are any better because, as I mentioned previously, many of us are having to wait more than 14 months between appointments.

 

[SB2015]

Tbh your team saying pumps are hard work is a bit of a cop out if you ask me, for some it can be but for others they are life changing making everyday management of diabetes that little bit easier, much like cgm does

I would agree with @Inka that pumps are hard work, but also life changing.

I was refused a pump the first time I asked, I asked for the reasons why. Then over the following 6 months I gathered data to respond to each of their reasons for refusing a pump. 6 months later I presented this I data at an appointment and was added to the list for pumps. There was then a bit of a wait as they always train people in groups but I was happy to wait and to find out all that I could to help me with the transition.

Having done the switch it takes time and monitoring to match your pump to the insulin that you need hour by hour. This needs reviewing at intervals so there is more work to do than on MDI but for me it was well worth it. The addition of sensors and now looping makes it a lot easier and locally some people are being started straight on the closed loop now.

In your position could you switch hospitals and start afresh with a new diabetes team. I realise that may not be convenient but could be worth it. Still helpful to gather information ready. Certainly be prepared to explain why you think a pump would benefit you, and do your homework to show an awareness of the work involved in setting it up and maintaining effective management with a pump. It is certainly not just ‘plug in and play’.

 

[Tdm]

My a1c is in the non diabetic range, so i thought i wouldn't meet the criteria.
I still spoke to my consultant who said....nah
But then i got a new condultant ( they were moving daphne grads over to daphne consulants) and she basically found a way for me to meet the criteria. Haven't got a pump yet but am on waiting list.

My opinion is, giving a pump to someone who hasn't got a good grip on mdi (multiple daily injections)/ carb counting is like giving a strad to someone who is a poor violin player.

It won't make them a better musician.

But if someone who had got to the limit of what mdi can do, then a pump can help take them further.

Pumps are pretty standand in many countries and should be so here.

Good luck in your pump quest!

 

[xItzPixi]

Yes, write them a letter and keep a copy for yourself. That’s the first step I’d take.

Hi thanks for this.

Providing a update, I went via pals and also had support from a local charity in my area who have also wrote to pals and the gp. I was offered an appointment in person within 3 days. I then told them how I want a insulin pump how it affects my quality of life etc etc. consultant said I wasn’t typically fitting the criteria and I pointed out how I feel penalised. Anyway she agreed to put me on a pump waiting list. But then nothing else since. So how long could this end up being?

 

[rebrascora]

At the moment many clinics have paused new pump starts to convert existing pump users to HCL, so I would suspect that the wait will be longer than usual and my guess would be that a 6-8 months wait is not unreasonable. I think even before HCL, it was several months. They have to apply for funding and then there is a wait for a place on a training course.
Have you done DAFNE or other similar intensive education course on carb counting and dose adjustment as that was something that they liked pump applicants to have under their belt?
Do you know what pumps your clinic offer/support? If so, you could start now doing your own research into which of those pumps might be best for you. Some clinics offer a pump introduction event, where you can go along and meet the reps for the different pumps and see/handle the pumps on offer and learn more about them and how they work and ask questions etc. Might be worth asking about if they offer that sort of thing.

 

[Inka]

Hi thanks for this.

Providing a update, I went via pals and also had support from a local charity in my area who have also wrote to pals and the gp. I was offered an appointment in person within 3 days. I then told them how I want a insulin pump how it affects my quality of life etc etc. consultant said I wasn’t typically fitting the criteria and I pointed out how I feel penalised. Anyway she agreed to put me on a pump waiting list. But then nothing else since. So how long could this end up being?

Unfortunately, the answer to that is similar to the answer to ‘how long is a piece of string’ @xltzPixi It depends on many factors and will vary from clinic to clinic. You could always ask for a rough idea of timescale, but be aware that this will be an estimate not a promise.

 

[helli]

My experience was much much quicker that the 6 to 8 months that @rebrascora mentioned but that just highlights how this varies from clinic to clinic.
It was necessary for me to attend a DAFNE equivalent course. Although I was told this was to ensure I could carb count, I think it was also in order to evaluate my commitment to learning more about diabetes management and my ability to do so. So, if this is offered to you (even if you have attended a course before), my recommendation is to attend and prove that you are understanding/investing time. When I said I had been managing my diabetes for 12 years at that point, the responded with "things change so you need to make sure you are up to date". Be aware they could use the same argument for you.

But as for how long the wait could be, I agree with @Inka, that you need to ask your clinic because it depends upon their process and waiting list.

 

[Proud to be erratic]

I agree with all of the above replies. In Dec '24, the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM) managed my expectations by confirming I didn't fully meet their criteria and then softening that by saying exceptions were made. The big issue for them at that time was that all planning was subject to significant financial reviews, that the introduction of HCL had become a relatively new extra commitment and there were staff and undermanning issues in the Dep't that made all short or long term planning extra complicated.

Since Oxford is a University Hospital, with a very good reputation for diabetes management but a high cost of accommodation in the city and surrounding area - demand for training places is high and turnover is also high since medical students find they can't stay in the area for longer than is essential to get qualified. So retaining newly qualified people to develop their basic qualification by gaining hands on experience is a serious problem, year on year. This all adds to the complexity of planning a programme for providing pumps, even if those requesting were fully within the NICE criteria.

This adds to the advice: probe within your preferred Trust to see what is going on in their region in respect of process and waiting time. Are there alternative Trusts that might have shorter waiting times?