Dear All, I have posted on this forum before but I have an issue that is getting no traction whatever with my diabetes care provider. I'm in my 46th year since being diagnosed with type 1 diabetes and almost losing my life back then when admitted to hospital in the final stages of DKA. I have been on MDI treatment since then but I need to seek the advantages of new diabetes 'tech' that is improving on an almost daily basis.The Clinical Lead care provider keeps stating that there are no funds or resources to allow me to migrate to new tech (i.e. a pump), despite the fact that I would be prepared to do my bit and buy one. I do not satisfy the NICE Guidelines for pump acquisition. She has also advised that I consider moving to alternative provider. I've reached a 'dead end' here. Both mentally and physically, now at the age of 61, I feel that new 'tech' would be of great benefit to myself. I prepared to travel and do what it takes to find a favourable 'ear' for my plight. I have a Libre 2 - so one step on the way! Can anyone offer any advice? Many thanks!
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Pump Acquisition Outside NICE Guidelines?
- Thread starter SteveG4
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Pumper_Sue
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- Type 1
I believe this is not a legal argument, if you qualify for a pump then a pump has to be provided.
Can you tell the forum on what grounds you qualify for a pump, this will help us make suggestions to help you.
Hi Sue, the argument that is being used is that I do not qualify on the basis of NICE guidelines. My HbA1C is in range and I do not have debilitating hypos. My general management of the disease has been OK. Its more from a mental and quality of life perspective for me personally and there is no 'ear' for that in the realms of my clinician. I'm getting within the 'senior' range of my life also. Everything 'appears' to work so I'm well down the priority list when resources and cash are scarce. I feel as though the complete 'me' is being overlooked. I'm getting 'tired' of MDI and want something that paves the way for the high tech stuff as I get into my old age.
nonethewiser
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Quality of life is in NICE guidelines, its what DSN & I fought case on.
nonethewiser
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Pump was mentioned some time before but declined offer, ended up where I could inject up to 8x daily & sites were taking pounding as a result, when mentioning this to dsn they again suggested insulin pump & would put my name forward for one if I agreed, so did just that & rest is history so they say.
Unless NICE guidelines have changed we used quality of life to argue my case, whereas injecting multiple times a day was having detremental affect on my health.
Leadinglights
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- Type 2
Diabetic specialist nurse.
nonethewiser
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Diabetes specialist nurse.
Satan’s little helper
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- Type 1
Hello,
If it’s any consolation to you @SteveG4 . My DSN (or take a pick from many.) Burts on intro “you might qualify for a pump.” (As an “ice breaker.”)
My endo is indifferent lol, (we professionally & politely disagree.) Who’s actually wearing the “tee shirt here?”) even the DSNs don’t like the bloke. But I did get a Libre 2 out of the deal with a little gentle persuasion. (After years of self funding.) “oh you got one of those.!” Said one DSN. Indicating she didn’t have a clue?
Now, I’m at “that age” where I’m heavily pushed statins. I can’t do emotional blackmail. (That’s a cheap shot.) I’m a balanced bloke who from experience knows Novorapid does work for me. My Glargine based basal is dodgy.
So, I’m thinking “gimme a pump & I’ll take the statins.” (Until, I “forget.”)
Yep, I do have a sensor prescribed but that isn’t the “foot in the door to a pump.” I try to explain what’s happening using the trends in the graph to my DSN. (On how my basal operates.) The responses are borderline ridiculous. “Give up the day job.” Was one??!!
If it’s any consolation to you @SteveG4 . My DSN (or take a pick from many.) Burts on intro “you might qualify for a pump.” (As an “ice breaker.”)
My endo is indifferent lol, (we professionally & politely disagree.) Who’s actually wearing the “tee shirt here?”) even the DSNs don’t like the bloke. But I did get a Libre 2 out of the deal with a little gentle persuasion. (After years of self funding.) “oh you got one of those.!” Said one DSN. Indicating she didn’t have a clue?
Now, I’m at “that age” where I’m heavily pushed statins. I can’t do emotional blackmail. (That’s a cheap shot.) I’m a balanced bloke who from experience knows Novorapid does work for me. My Glargine based basal is dodgy.
So, I’m thinking “gimme a pump & I’ll take the statins.” (Until, I “forget.”)
Yep, I do have a sensor prescribed but that isn’t the “foot in the door to a pump.” I try to explain what’s happening using the trends in the graph to my DSN. (On how my basal operates.) The responses are borderline ridiculous. “Give up the day job.” Was one??!!
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Bruce Stephens
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- Type 1
Is it? It doesn't look obvious to me in https://www.nice.org.uk/guidance/ta151/chapter/1-Guidance
Looks to me like you need disabling hypos (or, significantly, "persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life") or HbA1c over 69. So it looks to me like the QoL bit has to be specifically about hypos rather than more general anxiety (or anxiety about DKA). (And now most of us have CGMs I'm guessing hypo fear is a higher hurdle.)
(I think Partha Kar has asked that TA151 be revisited with the aim of combining it with whatever the hybrid closed loop TA is, but I'm not sure about the timescale for that.)
@SteveG4 im sorry to hear about the struggle you are having getting a pump. I had an odd route to getting mine (started on a pump last month). My actual diabetes team gave me a flat out no. And by chance the nurse at my gp surgery referred me to the pump consultant (by passing my diabetes team).
I do not know exactly on which grounds I got my pump but I explained that after 27 years on mdi with 10+ injections per day it was becoming unsustainable and that I wouldn’t be able to continue that (and therefore not able to keep good control/ low hba1c). Burn out is tough!
I gave other reasons (backed up by libre graphs data) too as to why a pump would benefit me too.
I hope you are able to find another hospital to be referred to about this. A lack of injection sites is obviously a serious issue and not one that will improve. If my nurse at the gp surgery hadn’t been so kind in listening to my rant (I wasn’t even seeing her for anything diabetes related) I wouldn’t be on a pump now.
My story was probably another atypical example - I exercise a lot and found that it greatly affected my BG in a way that I was not able to control which limited the duration of exercise. For example, I could only do cardio for about 40 minutes before going hypo regardless of trying to take extra carbs on board and I always went high after about 90 minutes of climbing before my levels were 12 or above and I felt too sluggish to continue.
Although I have only seen my diabetes team once per year, I made sure they knew me and I guess my exercise was memorable - I would ask for techniques to manage the highs and lows at most appointments. One consultant suggested a pump was the way forward and has certainly helped.
Is ability to exercise at this level quality of life? Was it too many hypos when doing cardio? I don't know the justification used but grateful to have the pump.
@Bruce Stephens you comment that anxiety about DKA is not mentioned in the NICE guidelines. I wonder if this is because such anxiety could increase with a pump. As there is only basal whilst the pump is working as there is no long acting insulin, if the pump fails we can experience DKA much faster with a pump than MDI.
I was never given Ketone strips until I got a pump.
Although I have only seen my diabetes team once per year, I made sure they knew me and I guess my exercise was memorable - I would ask for techniques to manage the highs and lows at most appointments. One consultant suggested a pump was the way forward and has certainly helped.
Is ability to exercise at this level quality of life? Was it too many hypos when doing cardio? I don't know the justification used but grateful to have the pump.
@Bruce Stephens you comment that anxiety about DKA is not mentioned in the NICE guidelines. I wonder if this is because such anxiety could increase with a pump. As there is only basal whilst the pump is working as there is no long acting insulin, if the pump fails we can experience DKA much faster with a pump than MDI.
I was never given Ketone strips until I got a pump.
Bruce Stephens
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- Type 1
Yes, I wasn't really suggesting that it should be mentioned. I'd much prefer some more generic diabetes distress criterion which would encourage DSNs to consider whether a patient might get a significant enough improvement in quality of life.
nonethewiser
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- Type 1
Does looks like those guidelines have since been adjusted, at time quality of life was listed as well as disabling hypo's & high Hba1c.
Never had disabling hypo's or needed help from third party, think at time Hba1c was 7.6 which wasn't high but not bad either, so that was why we pushed on the quality of life issue, thankfully it was successful.
Thebearcametoo
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- Parent
I’m so sorry you’re not being heard @SteveG4
See your GP and talk about your concerns and the struggle you’re having with the current clinical lead and the effect it’s having on you. The GP can either then advocate for you with your current team and that may get a pump or they will be able to refer you out of area if that’s your choice. If you can’t get one on the NHS even with another team there are some private clinics but try the NHS routes first.
See your GP and talk about your concerns and the struggle you’re having with the current clinical lead and the effect it’s having on you. The GP can either then advocate for you with your current team and that may get a pump or they will be able to refer you out of area if that’s your choice. If you can’t get one on the NHS even with another team there are some private clinics but try the NHS routes first.
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