# I might lose my funding and pump in August (TMI)



## ch1ps (Jul 3, 2017)

I've had my pump for 4 years now.  My DSN seems to think the funding will not be renewed as my HbA1c has gone up since I've had the pump.

The pump is due to be renewed in August, but my consultant appointment is in September and assume I will still get the supplies until then.  I'm trying to get my HbA1c down, but the likelihood of getting it to where it was 4 years ago is not going to happen by then.  I think there are underlying reasons as to why the HbA1c has gone up, but it seems these are not going to be taken in to consideration (got pump 18 months after DX so think that I may have been honeymooning, plus I think I may be peri-menopausal which is causing me no end of issues with matching insulin).

Does anyone have any advice as to what my options are.  In an ideal world I want to stay on a pump.  Self-funding is out of the question.  

Thanks


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## Pumper_Sue (Jul 3, 2017)

Personally I think your dumb silly nurse needs to get off her backside and work with you to find a solution for your problems instead of threatening you with pump removal.
Write directly to your consultant and express your fears and ask if s/he can make any recommendations on how to sort things out.

As a matter of interest what was your A1c and what is it now?


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## ch1ps (Jul 3, 2017)

Thanks Sue.  I will write to my consultant.

My HbA1c was 53 in 2014, I think it's around 60 at the moment.


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## everydayupsanddowns (Jul 3, 2017)

I would contact INPUT for their advice. 

Sounds like you need more and better support to me.


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## HOBIE (Jul 3, 2017)

Seriously good luck


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## ch1ps (Jul 4, 2017)

Thanks Mike & Hobie.

I will get in contact with Input as well then.


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## Pumper_Sue (Jul 4, 2017)

@ch1ps have you done any basal testing? If not start there so you have evidence you are being proactive. You might find you will have to change your basal every couple of weeks and fire fight so to speak. I have to do this on a regular bases when I have an MS flare.


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## HOBIE (Jul 4, 2017)

ch1ps said:


> Thanks Mike & Hobie.
> 
> I will get in contact with Input as well then.


I know I should not be saying this but I still have my old pumps & out of warranty But they work fine, Both Medtronic. I take one when I am going on holiday incase I drop one or something. Please keep asking !


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## everydayupsanddowns (Jul 4, 2017)

ch1ps said:


> Thanks Sue.  I will write to my consultant.
> 
> My HbA1c was 53 in 2014, I think it's around 60 at the moment.



60 is 7.5% in old money - many clinics still prefer people at this level because they get very twitchy when people approach 6.5% even though it is mentioned in NICE guidelines as better for the avoidance of complications, because of perceived increase in hypo risk.

Ask them if they would like you to push your A1c up above 69 (8.5%) so that you qualify under TA151 again? Offer to throw in at least one Severe Hypo a year if that would help?


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## ch1ps (Jul 4, 2017)

Pumper_Sue said:


> @ch1ps have you done any basal testing? If not start there so you have evidence you are being proactive. You might find you will have to change your basal every couple of weeks and fire fight so to speak. I have to do this on a regular bases when I have an MS flare.



I have done some basal testing.  So hopefully can use that as well.


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## ch1ps (Jul 4, 2017)

everydayupsanddowns said:


> 60 is 7.5% in old money - many clinics still prefer people at this level because they get very twitchy when people approach 6.5% even though it is mentioned in NICE guidelines as better for the avoidance of complications, because of perceived increase in hypo risk.
> 
> Ask them if they would like you to push your A1c up above 69 (8.5%) so that you qualify under TA151 again? Offer to throw in at least one Severe Hypo a year if that would help?



Good point.  I'm off to binge on cakes and biscuits until September.


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## Flower (Jul 4, 2017)

You really don't need the added pressure of potential funding removal when dealing with blood sugar and diabetes. So much emphasis is put on the HbA1c result, I know it's a useful bench mark but it's certainly not the whole story. Quality of life, hypo avoidance etc all come into it. 

My HbA1c has gone up and gone down during the years of using a pump, I've never been threatened with funding removal. I'd ask your team to work with you to try and iron out any problems you're having and also like Sue suggests be as proactive as possible in the data, testing and tweaking you can present to them to show your efforts to get good control. Keep fighting on ch1ps


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## SB2015 (Jul 4, 2017)

The only concern that our DSNs have is that they we use the facilities that the pump has over MDI.  

They were checking that we knew how to
- make alterations in basal rates over the 24 hours and to test these as necessary.
- use temporary basal rate reductions for periods of exercise 
- use temporary basal rate increases for illness or changes in medication
- make decisions about different ways of delivering  bolus insulin (multiwave, extended or standard)

They look for use of these facilities at our appointments.
Can you provide evidence of each of using these.
I download my pump data to them using Diasend and includes all this data.
If you add in evidence that you were honeymooning it could be a strong case for keeping the pump.

In addition the main things that I haeve picked up from people on here that ha helped me improve my HbA1c is to reduce the post meal spikes by 
- adjusting the timing of my bolus according to my premeal BG and the type of carbs I am eating and what with
- dont sit down for 15 minutes after every meal (sometimes we go for a walk, other times I do stuff in the garden or house)
- reduced my carbs, althugh nowhere near what Low Carbers do.
With these strategies I was surprised how much my HbA1c dropped.

I hope you can get the support that you need.


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## Pumper_Sue (Jul 4, 2017)

ch1ps said:


> I have done some basal testing.  So hopefully can use that as well.


This reply really doesn't help us to help you 
What exactly are you doing with your pump are you testing on a regular bases if so how often, how often do you test your basal and do you make adjustments, how long do you bolus before meals, do have the book pumping insulin by John Walsh?

If you can give a clearer picture then perhaps we can give you some pointers in the right direction


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## ch1ps (Jul 5, 2017)

Pumper_Sue said:


> This reply really doesn't help us to help you
> What exactly are you doing with your pump are you testing on a regular bases if so how often, how often do you test your basal and do you make adjustments, how long do you bolus before meals, do have the book pumping insulin by John Walsh?
> 
> If you can give a clearer picture then perhaps we can give you some pointers in the right direction



Sorry  I didn't elucidate.  I have done basal testing as per the DSNs instructions night-time, breakfast, lunch etc.  We've acted upon the results and input new basal rates and I adjust +/-% if ill or doing exercise etc.  I have amended my bolus rate for breakfast to avoid spikes.  I do have the book by John Walsh, but never really get round to reading it through - I work full-time and I'm studying for a masters.  I appreciate that's a cop out but I'm trying to live my life as well as I can.  I try to pre-bolus at meals to avoid spiking unless I'm relatively low.  I usually do at least 8 finger prick tests unless I'm using a libre (which is not very often and is usually to give my fingers a break).

I suppose I will have to re-evaluate what I am eating.  It feels like 1 step forwards and 6 back.


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## ch1ps (Jul 5, 2017)

SB2015 said:


> The only concern that our DSNs have is that they we use the facilities that the pump has over MDI.
> 
> They were checking that we knew how to
> - make alterations in basal rates over the 24 hours and to test these as necessary.
> ...



Thanks SB

I thought I was pretty pro-active with amending my rates.  I have got all the notes from the consultant appointments and I can see on there that my basal and bolus rates have changed many times over the period since getting the pump.  

We also download the pump results at clinic and then think about strategies to help with spiking etc.  I don't have evidence of honeymooning other than the date of diagnosis and that my insulin requirements are higher now than when starting with the pump.
I'll definitely take in to consideration your points about being active after eating etc.  Hopefully they will help!


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## everydayupsanddowns (Jul 5, 2017)

I think you are doing really well @ch1ps - your A1c is excellent and well below the national average. I am really quite shocked that your clinic seem to have threatened you with removal of pump funding. I really do think you need to have a proper chat with them and let them know how much worry this has caused you, and how they are planning to support you more in your self-management to get your A1c back to where it was and iron out any wrinkles, or tackle things that are worrying YOU about your self management.


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## ch1ps (Jul 5, 2017)

Flower said:


> You really don't need the added pressure of potential funding removal when dealing with blood sugar and diabetes. So much emphasis is put on the HbA1c result, I know it's a useful bench mark but it's certainly not the whole story. Quality of life, hypo avoidance etc all come into it.
> 
> My HbA1c has gone up and gone down during the years of using a pump, I've never been threatened with funding removal. I'd ask your team to work with you to try and iron out any problems you're having and also like Sue suggests be as proactive as possible in the data, testing and tweaking you can present to them to show your efforts to get good control. Keep fighting on ch1ps



Thanks Flower

I'm going to write a letter to my consultant and get that off this week.  I feel like I'm doing as much as I can, but it's just not working.  I was also doing a lot of running last year and haven't kept that up, which I think has affected my HbA1c - again I've told the DSN this.


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## ch1ps (Jul 5, 2017)

everydayupsanddowns said:


> I think you are doing really well @ch1ps - your A1c is excellent and well below the national average. I am really quite shocked that your clinic seem to have threatened you with removal of pump funding. I really do think you need to have a proper chat with them and let them know how much worry this has caused you, and how they are planning to support you more in your self-management to get your A1c back to where it was and iron out any wrinkles, or tackle things that are worrying YOU about your self management.



Thanks Mike

I have to say I find the thought of being sans pump emotionally distressing - and that in itself is not going to be of help.  I'll get on to my DSN and ask her exactly where she thinks my HbA1c should be.  I've been seeing her for a year and none of the strategies seem to be working.


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## Pumper_Sue (Jul 5, 2017)

ch1ps said:


> Thanks Mike
> 
> I have to say I find the thought of being sans pump emotionally distressing - and that in itself is not going to be of help.  I'll get on to my DSN and ask her exactly where she thinks my HbA1c should be.  I've been seeing her for a year and none of the strategies seem to be working.


Yes do ask her what she thinks you should be achieving. IE your A1c now does it involve a lot of lows or highs or are you stable with your numbers? If stable then I would stick two fingers up at her. If not and she is adjusting your pump then again why is she it's your pump so you need to do your basal testing and adjust them as you go along.  I tend to work on the theory of 3 days out of range change the basal. Bolusing before meals is a must though.

It could just be a few little tweaks will bring it down a notch, even though I hasten to add you are in the target range.

So you can keep motivated ask your GP for an A1c every 3 months so at least you can see if any changes have helped the over all picture.


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## Michele (Jul 16, 2017)

ch1ps said:


> I have done some basal testing.  So hopefully can use that as well.


Hi Sue,
all the suggestions make sense, especially basal testing. I found that peri menopause (was a decade ago for me now!)  messed up my control, but as you say nobody seems to take that into consideration unfortunately. I really wish you luck in sorting this out so you get to stay on a pump.


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## john cuthbert (Jul 20, 2017)

Hi Sue,


I dont often post on these forums but i was just browsing around and found this thread.  I have been T1 for 35 years and pumping for 5 years.  My control has never been anywhere close to perfect.  My recent HBA1c was 57 which is pretty close to yours. My blood test report says this is satisfactory.  My team are happy with it too.    I think it is unlikely that funding is bring withdrawn because of a 60.
My method is to take more tests and top up doses when required.  It seems to work.  BTW my pump nurse told me that none on my group are that clued up either!     Hope it works out for you.


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## ch1ps (Oct 31, 2017)

Update on my original post

Thanks to all who responded.

Just had my DSN appointment today, and my A1c has come down and my pump funding has been renewed.  Have to say I did work hard with the DSN and also self funded a Libre so I could see what was going on with my BG.  I'll be getting the 640G on 16th November.


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## grovesy (Oct 31, 2017)

Glad you got continued funding.


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## ch1ps (Oct 31, 2017)

grovesy said:


> Glad you got continued funding.



Thanks Grovesy


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## Ljc (Oct 31, 2017)

I’m glad they continued your funding.


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## Lucy Honeychurch (Oct 31, 2017)

Good news


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## ch1ps (Oct 31, 2017)

Thanks Ljc & Lucy


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## HOBIE (Oct 31, 2017)

Roll on for the 16th !  & the 640. I like the Libre because it tells you what is going on.


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## ch1ps (Oct 31, 2017)

HOBIE said:


> Roll on for the 16th !  & the 640. I like the Libre because it tells you what is going on.


Thanks Hobie.  Yes, the Libre is great for seeing the trend rather than static number.  Just hurts the bank balance.  But needs must.


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## Pumper_Sue (Oct 31, 2017)

ch1ps said:


> Update on my original post
> 
> Thanks to all who responded.
> 
> Just had my DSN appointment today, and my A1c has come down and my pump funding has been renewed.  Have to say I did work hard with the DSN and also self funded a Libre so I could see what was going on with my BG.  I'll be getting the 640G on 16th November.


Very pleased to hear your good news now keep up the good work


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## SB2015 (Oct 31, 2017)

Glad all your hard work paid off.  Now keep on side with DSN and they should be able to help you keep in a steady track.  Well done.


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## Radders (Oct 31, 2017)

So glad to hear that! I do think they were mean to threaten you like that though.


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## ch1ps (Oct 31, 2017)

Thanks Sue, SB & Radders.

Hope to see a continued reduction in my HbA1c as still working hard to keep in the zone.


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## everydayupsanddowns (Oct 31, 2017)

ch1ps said:


> Update on my original post
> 
> Thanks to all who responded.
> 
> Just had my DSN appointment today, and my A1c has come down and my pump funding has been renewed.  Have to say I did work hard with the DSN and also self funded a Libre so I could see what was going on with my BG.  I'll be getting the 640G on 16th November.



That’s FAB news Ch1ps! Really pleased for you - well done for all your hard work


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## Northerner (Nov 1, 2017)

ch1ps said:


> Update on my original post
> 
> Thanks to all who responded.
> 
> Just had my DSN appointment today, and my A1c has come down and my pump funding has been renewed.  Have to say I did work hard with the DSN and also self funded a Libre so I could see what was going on with my BG.  I'll be getting the 640G on 16th November.


Great to hear!


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## HOBIE (Nov 1, 2017)

ch1ps said:


> Thanks Hobie.  Yes, the Libre is great for seeing the trend rather than static number.  Just hurts the bank balance.  But needs must.


I only use mine when I am ding something important to me. I trust the Libre & that takes some doing


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## ch1ps (Nov 2, 2017)

Thanks Mike, Northerner.


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