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.
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Pump .. is it worth funding privately?
- Thread starter Wanda62
- Start date
Mumpie_olgran
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- Type 1
I had a different experience. I was able to source privately originally and am now nhs funded
I went to one of the private clinics in London and after two consultations came away with omnipod 5. But they had other pumps I could have sourced too. Went with o 5 because I liked idea of tubeless and also that it’s monthly cost that I could stop whenever rather than massive outlay on tubed pump to begin with
Still a postcode lottery to then get nhs funding but it did get sorted
I went to one of the private clinics in London and after two consultations came away with omnipod 5. But they had other pumps I could have sourced too. Went with o 5 because I liked idea of tubeless and also that it’s monthly cost that I could stop whenever rather than massive outlay on tubed pump to begin with
Still a postcode lottery to then get nhs funding but it did get sorted
@Wanda62 sorry to read about your problems.
You don't mention why you need a pump ... and yes, I mean "need" as it is expensive either to you or to the NHS.
It is thought of by some who inject that pumping is the silver bullet to perfect diabetes management but it is just another way to dispense insulin.
If you are able to get HCL, things are a little easier but you still need to carb count, change the pump regularly, etc.
You may also have to be able to quickly revert to injecting if the pump fails, THI sis rare (it has happened to me twice in 9 years) but it is an added concern when using a pump.
I write this as someone who has been pumping for 9 years. It helps me when I exercise but I do not think it is much less effort than injecting.
Sorry if I sound blunt but if you can articulate why you need a pump and how it will help with your mental health, your DSN may be more sympathetic and put you higher up the waiting list.
You don't mention why you need a pump ... and yes, I mean "need" as it is expensive either to you or to the NHS.
It is thought of by some who inject that pumping is the silver bullet to perfect diabetes management but it is just another way to dispense insulin.
If you are able to get HCL, things are a little easier but you still need to carb count, change the pump regularly, etc.
You may also have to be able to quickly revert to injecting if the pump fails, THI sis rare (it has happened to me twice in 9 years) but it is an added concern when using a pump.
I write this as someone who has been pumping for 9 years. It helps me when I exercise but I do not think it is much less effort than injecting.
Sorry if I sound blunt but if you can articulate why you need a pump and how it will help with your mental health, your DSN may be more sympathetic and put you higher up the waiting list.
Natalie123
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I would speak to your consultant and ask what your options are. I did ask about self funding a pump before I got my first pump and they said they would look into it and let me know what options I had but the rules then changed and I became eligible for a pump on the NHS. What treatment are you currently using? Why are you wanting a pump? (That's not a criticism, it's just helpful for us to know to give you better advice and also it's helpful to be able to put your 'case' to the hospital). I don't know if 5 years wait for a pump is normal but it does sound long to me, might it be worth finding out what the wait is at other hospitals in your area and seeing if you can switch? I don't know if that's possible or not, but you could look into it. Are you struggling with your mental health because of your treatment for melanoma or because of the diabetes diagnosis or is this something you've struggled with previously? It is definitely worth talking to your diabetes team (or the people treating you melanoma) because psychological support should be available for newly diagnosed patients especially if you are struggling.
nonethewiser
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- Type 1
5 years is a hell of a long time to wait for a pump, are you UK based @Wanda62
If so there's a guy who posts on social media who is a Professor in diabetes & endocrinology, think his name is Partha Kar although might have misspelt his name, anyway he pushes for tech like pumps & cgm to be more widely available to patients in shortest time possible, think member here @Bruce Stephens know a bit about his work so have tagged him.
If so there's a guy who posts on social media who is a Professor in diabetes & endocrinology, think his name is Partha Kar although might have misspelt his name, anyway he pushes for tech like pumps & cgm to be more widely available to patients in shortest time possible, think member here @Bruce Stephens know a bit about his work so have tagged him.
Thinking about his overnight, I wonder if the waiting list is 5 years or that you will have to wait 5 years from diagnosis before getting a pump.
Although children often get a pump soon after diagnosis, adults typically have to wait to show they are willing to put in the effort required for a pump (being able to get the most out of a pump requires a fair amount of learning how to use it and how it works for you ... a pump is not the easy option), that they are competent at carb counting (with no long acting insulin, there is nothing to "mop" up any undercounts) and that injecting is so second nature that they can revert back if the pump fails.
I am not suggesting we should all go back to sterilising syringes but it is important to remember that pumps are relatively new (and expensive) and people have been surviving for 50, 60, maybe even 70 years without them.
Although children often get a pump soon after diagnosis, adults typically have to wait to show they are willing to put in the effort required for a pump (being able to get the most out of a pump requires a fair amount of learning how to use it and how it works for you ... a pump is not the easy option), that they are competent at carb counting (with no long acting insulin, there is nothing to "mop" up any undercounts) and that injecting is so second nature that they can revert back if the pump fails.
I am not suggesting we should all go back to sterilising syringes but it is important to remember that pumps are relatively new (and expensive) and people have been surviving for 50, 60, maybe even 70 years without them.
Robin
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It also occurred to me that waiting would give an adult time to get their MDI technique honed and once they are more experienced, their results might take them out of the criteria for pump eligibility. I wouldn’t qualify for one now, but I might have met the criteria soon after diagnosis.
Proud to be erratic
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There are, inevitably, contradictions within this discussion about a "5 year" wait.
I personally think the logic, @Robin, of needing time to become adept with MDI first - is great. But it was clear from my recent Endo Consult that some adults are going onto HCL almost straightaway; this surprised me and I questioned if I'd heard correctly - I had.
The 5 year programme for the roll out of HCL, as pioneered by Partha Kar in 2023, is perhaps where the "5 year" terminology originated. Last month the Churchill Hospital in Oxford had effectively frozen their pump and HCL programme, simply while they reappraised the demand (ie the requirement to be met) against the resources (money, in house staffing, potential out-sourced contractors). To me, frustrating as it felt at that moment, it actually was sensible and reasonable. The Hospital's plans from 2024 were under pressure and time to draw breath and revalue everything was essential.
Of course, as my Endo said, meanwhile existing patients and very urgent new patients still had to be managed - despite their "freeze" of last year's programme. I could see it was embarrassing for the Department, yet absolutely necessary for them to wrestle with the big picture before making promises and commitments to individual patients.
I personally think the logic, @Robin, of needing time to become adept with MDI first - is great. But it was clear from my recent Endo Consult that some adults are going onto HCL almost straightaway; this surprised me and I questioned if I'd heard correctly - I had.
The 5 year programme for the roll out of HCL, as pioneered by Partha Kar in 2023, is perhaps where the "5 year" terminology originated. Last month the Churchill Hospital in Oxford had effectively frozen their pump and HCL programme, simply while they reappraised the demand (ie the requirement to be met) against the resources (money, in house staffing, potential out-sourced contractors). To me, frustrating as it felt at that moment, it actually was sensible and reasonable. The Hospital's plans from 2024 were under pressure and time to draw breath and revalue everything was essential.
Of course, as my Endo said, meanwhile existing patients and very urgent new patients still had to be managed - despite their "freeze" of last year's programme. I could see it was embarrassing for the Department, yet absolutely necessary for them to wrestle with the big picture before making promises and commitments to individual patients.
Bruce Stephens
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He was lead for technology for Type 1 diabetes for NHS England (or something similar to that). I think he's continuing some of that work, concentrating on the HCL rollout. (He still wants HCL to be offered to everyone with T1.)
Partha S Kar (@parthaskar.bsky.social)
Done a few things in Diabetes care Loves Dogs, Bollywood; Comic books; Whiskey Failed Tebbitt Test Kloppite forever ⚽️ Motto? “Dance lightly with life”
bsky.app
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Sugar and spice....wish all things were nice.
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rebrascora
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My feeling is that more technology isn't always better. I think that CGM and MDI should allow many patients to manage their diabetes well. I think the media storm around artificial pancreases has made people clamour for HCL pumps because it sounds like you don't have to bother with your diabetes anymore, but pumps come with their own complexities and the ability to fail as do sensors so those are 2 increased variables. There is something comforting to me about being in control of my own diabetes management and learning to do that as well as I can.
How long have you been diagnosed with diabetes?
The early weeks and months of diabetes management are tough for everyone and you have my sympathies that you are having to juggle that alongside your other very serious health issues but having a pump won't change that. Learning how to use your insulin to manage your diabetes well is the key, whether that is via injections or a pump, but there will be frustration involved in that learning process regardless of whether you inject or have a pump.
How long have you been diagnosed with diabetes?
The early weeks and months of diabetes management are tough for everyone and you have my sympathies that you are having to juggle that alongside your other very serious health issues but having a pump won't change that. Learning how to use your insulin to manage your diabetes well is the key, whether that is via injections or a pump, but there will be frustration involved in that learning process regardless of whether you inject or have a pump.
nonethewiser
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He was lead for technology for Type 1 diabetes for NHS England (or something similar to that). I think he's continuing some of that work, concentrating on the HCL rollout. (He still wants HCL to be offered to everyone with T1.)
Partha S Kar (@parthaskar.bsky.social)
Done a few things in Diabetes care Loves Dogs, Bollywood; Comic books; Whiskey Failed Tebbitt Test Kloppite forever ⚽️ Motto? “Dance lightly with life”x.com
Sugar and spice....wish all things were nice.
Hopefully that day will come where everybody will be offered HCL.
Said before he seems like a good guy does Partha.