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Type 1 for almost 35 years…..why have I not been offered a pump

C

CatD

New Member
Relationship to Diabetes
Type 1
I was diagnosed type 1 in early 1990’s. I am starting to find controlling my blood sugars extremely difficult. I have only been assessed by my diabetic care team twice in 5 years and one of those appointments was a phone call. I got onto my doctor who told me it was up to me to chase them. I got an appointment scheduled in one months time. I am going to ask why was I neglected for so long. I also want a pump but I heard I may not qualify. I am 42 years old. I have controlled it quite well throughout the years….but I think the years of dealing with this disease are finally catching up with me.
 
Welcome @CatD 🙂 If you’re a woman, do you think hormonal changes might be adding to your difficulties? I had this during peri. Or is it more a case of the mental load of it all?

I’ve had a pump more than 20 years. It was a bit of a fight to get it then, but it’s a little easier now. Before your appointment, I suggest you read up on pumps and list your difficulties. Then explain how a pump will help them - ie make a case for a pump.

As you probably know, pumps are just another insulin delivery system. They’re more work than injections (I sometimes go back to injections for a pump break). The main benefit is the ability to tailor the basal rate more closely to your needs.
 
Make a note of how diabetes impacts your everyday life & why your finding it more & more harder to control it, for example having to inject more or experiencing more hypo/ hyper episodes than previously. It's not just about physical impact but mental also so make sure to put these points across at appointment.

Better to be pre armed so read up on pumps as much as possible beforehand & explain to them why you think a pump would make life much better for you. Good luck.
 
What is your a1c and time in range? Depending how good these are you may not qualify for a pump. It’s generally up to you to ask and prove you qualify rather than wait to be offered one. Even the rollout of them planned over the next 4-5 years has eligibility criteria
 
Goodness! Sorry to hear you’ve had such patchy care recently @CatD

It has been tricky since the pandemic, with lots of folks “falling through the cracks”, but you should still have been getting your annual checks.

Are you seen at the hospital as well as by your GP?

Good luck with your enquiries about an insulin pump. They are a bit of work, but worth it in my experience.
 
Thank you everyone. My sugars have been awful for past 6 months…..really high…hard work trying to get them down and staying down around a normal level. Maybe it is my age and hormones but it’s like I have almost become insulin resistant. Am forever injecting to get them down
Doctor told me my cholesterol was slightly above the desired level. I am not overweight and I eat healthy. I am doing more exercise now. Getting checked again in 5/6 weeks. She wanted to put me on statins…..but trying to get cholesterol levels down with more exercise and I also want to ask my consultant whom I shall meet at my diabetic appointment.
Stress levels were really high too
Thanks everyone
 
Welcome to the forum @CatD . I am pleased that you have found us.

As others have said a pump involves some work but it can make a big difference and improve management of T1. I would recommend making sure whichever one you choose is one that can be used in a Hybrid Closed Loop.

I started with a pump, and later self funded the sensors when they became available, and later got those on NHS. That worked well and I found that my TIR got better and better , but this led to me setting totally unrealistic expectations of myself, and striving for perfection. That is impossible and it took me some time to accept that.

Just over four years ago I switched to using a different pump and the associated sensors to form a Hybrid Closed Loop. This for me has reduced the amount of time I am having to think about my diabetes, increased my amount of sleep and also improved my TIR with a lot less effort on my part. I have mornings where once I have bolused for breakfast I don’t even bother to look at the pump. It will soon tell me if it needs some attention.

There is work in setting it up, but it is worth it.
 
Hi @CatD and welcome to the forum - sorry to hear about the gaps in care but sadly this is not unsurprising - apparently my DSN is arranging my 1st ever consultant appointment almost 3 years on from diagnosis but I'm reserving judgement until/if it actually happens (apart from seeing a locum after a couple of months who quite frankly, didn't have a clue!) - it certainly sounds like its worth trying a pump/HCL - personally I have Bob Hope of qualifying for one as my management is very tight, but as you say the mental burden of it all can be overwhelming - that's the route I'm going to take if I ever get a consultant appointment - good luck 🙂
 
Well here's an idea for @CatD - Type 1 diabetes is your employer, same as it is mine. It requires us to carry out multiple actions every single day of our lives with no pay no holiday no perks and no retirement EVER. Question to consultant - could YOU ever envisage working for an employer like that? No you wouldn't - but I'm stuck with it - so after 50+ years (in my case) don't you think I might possibly deserve some help from new technology before I drop dead of old age?

Is more or less what I said to my D consultant (who was not a consultant but one of his Housemen, still have that title despite plainly being a lady!) last Autumn.

She asked if I meant a Closed Loop pump, I said Yes and got the offer of one within a fortnight. I was gobsmacked at the speed as it's the first time since I started going there they've managed to respond so quickly to a pump replacement!

Years and years ago when my friend in Cornwall was struggling with MDI and said she'd rather like a pump I enquired when she'd last asked for one? She hadn't, she didn't think she'd be allowed one. I said, Well if you don't ask, how the heck are the NHS ever going to know you'd like one in the first place and can quote all the reasons you think one could help you? and that you know it'll mean a sharp learning curve and you're prepared to do the work involved to get it to work properly for you.

Hence - I'm telling you the same!

Assemble your Agenda for the meeting - your "Shopping List" if you like!
 
Lucyr said:
What is your a1c and time in range? Depending how good these are you may not qualify for a pump. It’s generally up to you to ask and prove you qualify rather than wait to be offered one. Even the rollout of them planned over the next 4-5 years has eligibility criteria
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I enquired about a pump at my Clinic about a year ago. I have been a Type One diabetic since I was 15, now 77. Over the years I had periods when my control varied from very good, to really terrible. Usually my own behaviour caused the bad. How my wife put up with all the hypos while we did up an old house is beyond explanation. We got to know the ambulance crews quite well! Anyway, the clinic said that as my control was “very good” I did not meet the criteria for a pump.

But gradually it’s getting harder to stay in target. More unexpected ups and downs. More surprising effects of eating relatively low value carbs. Importantly less warning of hypos and highs. When I was young I could feel how my blood sugar was behaving. Not any more. So I’m more dependent on CGM. The recent Freestyle Libre problems didn’t help and I’ve switched to Dexcom. My “diabetic paranoia” is getting very tiring,

I think the suggestion that you draw up a shopping list of reasons why you need a pump is a very good one. I will certainly do so for my next clinic visit.

Nick
 
I've been type1 for 42 years with more or less regular 6 monthly check ups, latterly mostly by phone, and pumps have never been mentioned, I had to ask for the CGM and that came reasonably promptly. I assume it's because I have good control without one. I don't mind as I'm not really interested in going down that road but my point is that even with long term regular checks you don't necessarily get offered the latest tech. I find your lack of regular appointments more alarming. Good luck, at least you can discuss the pros and cons when you get your appointment.
 
NickE said:
How my wife put up with all the hypos while we did up an old house is beyond explanation. We got to know the ambulance crews quite well! Anyway, the clinic said that as my control was “very good” I did not meet the criteria for a pump.
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You could probably have argued that (those sound like hypos which should have called for more support, perhaps including a pump), though whether you'd have been successful or not probably depends where you live. Certainly not that your control was "very good", since it obviously wasn't if you repeatedly needed paramedics to help with hypos. Some places have a lower bar for pumps than others, and there's general agreement that TA151 wasn't (and isn't) followed properly.
NickE said:
I think the suggestion that you draw up a shopping list of reasons why you need a pump is a very good one. I will certainly do so for my next clinic visit.
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Yes, that's definitely the usual advice. https://breakthrought1d.org.uk/know...n-pumps/can-i-get-an-insulin-pump-on-the-nhs/

That looks like it's referring to the TA151 criteria. It's certainly worth checking TA943, too. See if you can try and put your current issues (such as hypo unawareness) into the checklists of either or both of the TAs.

(I write all this from the perspective of someone interested in the topic, but I'm still on MDI.)
 
One thing I have learnt recently with my own health is some of it is in our control to get better treatment.

Is it a hospital or local surgery team? Can you change where you are treated?

I met the NICE requirements for CGM but kept being told no, as soon as we moved health authority I was asked by the practice nurse why I wasn't on the libre and I was on it 48 hours later. My care since then has been super. However I did need to ask for a referral to the hospital team, and tell that team what I needed. I have 6 months appointments with the consultant, they helped me get my sterilisation after years nearly 15 years of being told no, and now I am on a HCL as because of the CGM data they can see that even with my HB1AC not meeting the requirements of HCL, the data for TIR and others matters mean one is better for me. I have a DSN team I can reach out too, regular appointments and help as needed.

It's not just about HB1AC or time in range, its mental load, hypos, sleep, how diabetes impacts your life etc.

Ask them why you don't meet the requirements, and tell them why you feel you do. CGM are great because the data is there, you can show with the data the impact, it helps.
 
I will certainly follow your advice. I like the statistics available on my new Dexcom 1+ Clarity app, particularly the AGP report which gives a composite graph showing glucose levels over two weeks together with the individual days of that period. It seems that my “averages” are pretty good (72% in range), but also that on some days I’m too high, and also a couple of hypos each period, often at night. So using just average figures does not really demonstrate the swings and roundabouts of living with Type 1.

Nick
 
@NickE what strikes me about your comments is not so much about what your Dexcom graphs and reports are showing you - many people would be very happy with 72% in range when the target is 70% - but your comment "it’s getting harder to stay in target."
I recommend focusing on the effort that you are putting in and how much it is affecting your life. For example, how many times are your doing correction boluses? Does your lack of hypo awareness stop you from doing anything? How does the yoyoing from hypo to hyper make you feel?
If you can demonstrate that the lack of "control" you would get from a pump is impacting your quality of life, you may get more positive response.

I also notice you mention your Dexcom graphs are showing hypos at night. Are these nigh time hypos checked with finger pricks? I ask as they could be down to compression lows (false low readings caused when pressure is applied to your sensor) which may be skewing your averages.
If you can check these lows and demonstrate that you do so, it may also help your case as you are showing you are willing to put in the effort required to understand - pumping is different to MDI and can produce better results but it is not necessarily easier.
 
helli said:
@NickE what strikes me about your comments is not so much about what your Dexcom graphs and reports are showing you - many people would be very happy with 72% in range when the target is 70% - but your comment "it’s getting harder to stay in target."
I recommend focusing on the effort that you are putting in and how much it is affecting your life. For example, how many times are your doing correction boluses? Does your lack of hypo awareness stop you from doing anything? How does the yoyoing from hypo to hyper make you feel?
If you can demonstrate that the lack of "control" you would get from a pump is impacting your quality of life, you may get more positive response.

I also notice you mention your Dexcom graphs are showing hypos at night. Are these nigh time hypos checked with finger pricks? I ask as they could be down to compression lows (false low readings caused when pressure is applied to your sensor) which may be skewing your averages.
If you can check these lows and demonstrate that you do so, it may also help your case as you are showing you are willing to put in the effort required to understand - pumping is different to MDI and can produce better results but it is not necessarily easier.
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And sleep!
 
Maybe I’m just being obsessive! I shall see how using the Dexcom 1+ coupled with the three apps (Dexcom 1+, Follow and Clarity) help. At the moment I prefer them to Free Style Libre. The Applewatch alarm is really effective with my night time hypos. But having to stay within 30 feet of my phone is a nuisance. I’m still juggling my carb levels as I go to sleep, and this is related to my long acting morning insulin and the fast acting doses and food intake. I’m trying to smooth everything out. Maybe as I’m retired from work and having more time on my hands I’m guilty of being too diabetes self-conscious … but losing my physical early warning signs really is a pain.

Nick
 
Finger pricking and CGM are just options to me, I can make do with either. I sometimes worry about becoming reliant on CGM, it's just so convenient when it works properly, but I'm perfectly happy with the finger pricks and somehow think I'm more in control.
 
Merluza said:
Finger pricking and CGM are just options to me, I can make do with either. I sometimes worry about becoming reliant on CGM, it's just so convenient when it works properly, but I'm perfectly happy with the finger pricks and somehow think I'm more in control.
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I like to have a Libre break occasionally. Usually when I am chewed off with the Libre alarm going off all the time and feel like I am at it's beck and call. This invariably happens when my diabetes is going through a "difficult" patch. I only ever do it when a sensor comes to an end so that there is no waste but a couple of days of finger pricking reminds me that I am not reliant on Libre and can live without it but also how much more convenient it is and I go back to the next sensor with renewed appreciation.
 
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