Author Topic: what would you ask...................  (Read 930 times)

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Offline himtoo

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what would you ask...................
« on: 20 November 2018, 01:36:15 PM »

Hi Everyone


I have been appointed to the All Wales patient reference group and I attend my first meeting in Cardiff on 12th December.


this group consists of a few dozen healthcare professionals covering all aspects of the care of Diabetics in Wales
a handful of Diabetic patients and parents of diabetics make up the balance


so over the coming months i shall be representing  diabetics ( type 1's and type 2's ) and was wondering what sort of things people would want asking if they had this voice......
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6) 04/18 46 (6.4)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014

Offline sedge

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Re: what would you ask...................
« Reply #1 on: 20 November 2018, 02:38:39 PM »
First things that jump to mind are a) availability of pumps and the criteria for them and b) ditto Libre, plus the chestnuts of availability of own choice of pen needles and test equipment for T2s alongside decent education for them - on the assumption that all T1s (and their parents!) automatically get DAFNE (with lower case initials since it doesn't need to actually be the 'TM' version to be any good)


I recommend an outlet for frustration, too Paul - anyone who's ever served on a committee will know the members need one at times!
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Pattidevans

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Re: what would you ask...................
« Reply #2 on: 20 November 2018, 05:37:27 PM »
Since the whole prescription issue is quite different in Wales and the recent announcement of increased Libre availability without the postcode lottery that's one of my issues that isn't worth asking about.
I think emotional/psychological support would be one... is there any?  Also education for all. 

It would be a wonderful world if we could all have the Libre including T2s on insulin, support when we feel lost to look at and help analyse the resultant patterns and closed loop pumps (the latter currently not being on the market, but you know what I mean).  Also as Sedge says, test kits for T2s and a decent set of instructions on how to use them effectively - a sheet with Jenifer's advice would do!
I do think though, that in the same way T1s all have meters and strips these days, one day in the not too distant future we'll all have flash monitoring... just depends how long it takes.  I've just spent my government fuel grant on two more sensors.

Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans

Offline sedge

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Re: what would you ask...................
« Reply #3 on: 20 November 2018, 09:29:55 PM »
Libre's only any good to anyone whatever type or variety they happen to be, if they are able to get usable info out of it.  Please don't get too carried away with wanting everyone to have it - just make it available to those that want the thing though!
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Pattidevans

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Re: what would you ask...................
« Reply #4 on: 21 November 2018, 08:48:18 AM »
I know you don’t want it Sedge and I am glad your Diabetes is so stable that you know what it’s doing all the time.  Mine’s sure not that stable and the last 3 weeks of having the Libre has shown me night hypos that I was unaware of and it’s scary. It has enabled me to adjust basals accordingly.  However, as you say it is a waste of money for those who do not want it.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans

Offline Liam

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Re: what would you ask...................
« Reply #5 on: 21 November 2018, 12:20:09 PM »
It is worth remembering most of our long term members aren't the standard diabetic either. I mean before I joined here I did the bare minimum to not end up in A&E and had Hb1Acs in the 9-10 range. I knew I wanted better but never plan to be so involved.

I do think CGM / flash is going to become almost standard as the price comes down. Not expecting it to happen quickly but I do think it will be the norm like testing with meters is now.
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline Pattidevans

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Re: what would you ask...................
« Reply #6 on: 21 November 2018, 01:49:48 PM »
I'm sure there were people who were quite content to boil their pee back in the day too!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans

Offline sedge

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Re: what would you ask...................
« Reply #7 on: 21 November 2018, 06:52:35 PM »
We had to be content since we had no other option.

I know not where you have gleaned the idea that my BG is so stable I don't need CGM.  My problem with the Libre is that because the readings from it bore no resemblance whatsoever to what my meter was telling me - Libre told me things like I'd been hypo - in the high 2s and 3s for hours on end during normal waking hours when my BG had never dropped below 6 - or the opposite, told me my BG had remained stable in a straight line before during and after an absolute carb fest - over 3 different sensors on different arms - there was no way Pedro I could ever trust it to tell me the truth - so what the hell's the point in me spending money on the thing?

I have no idea what my BG does every night or any time I don't test or am not basal testing - that's why I was so keen to try the stupid thing in the first place - to ruddy well find out what it does when and see if there are any patterns,  I'm none the wiser about that.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Pattidevans

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Re: what would you ask...................
« Reply #8 on: 21 November 2018, 11:49:09 PM »
Here Sedge
https://diabetes-support.org.uk/diabetes_forum/index.php/topic,7092.msg104912.html#msg104912You said your BG just gently rises and then drops after meals.
Maybe your interstitial fluid and the Libre just don't work?
I am finding it amazing on my 2nd paid sensor for months... but maybe I shouldn't post about it here if I am going to be disbelieved or the results queried.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans

Offline sedge

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Re: what would you ask...................
« Reply #9 on: 22 November 2018, 12:16:19 PM »
I can't believe any of what the thing told me and can't base mu judgment on it.

Not having regular patterns I can believe of course - but not having spikes after meals?  Does not compute Captain!
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline himtoo

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Re: what would you ask...................
« Reply #10 on: 24 November 2018, 08:47:00 AM »
thanks for the replies

I think mental health support is going to be one of my first areas
there is a woeful lack of support and we do live with this damn beast a very very long time.
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6) 04/18 46 (6.4)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014

Offline Pattidevans

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Re: what would you ask...................
« Reply #11 on: 24 November 2018, 10:07:22 AM »
Yes mental health is very important, but if we had ongoing support it may alleviate the need to actually go to see someone specifically for mental health.


A personal example.  i’ve been struggling with post-meal spikes which turn into crashes.  Yesterday we’d been out for lunch, had fish and chips which was delicious and didn’t spike me that much... 12ish.  Later in the evening we just had bread and cheese.  I spiked up to 17 and it was still going up despite lobbing in corrections.  Changed cannula... ended with me in bitter tears for a good hour because “they see you once a year and tick you off (for having too low an Hba1c) and then you’re left to struggle with it yourself for the next year”.  I don’t need to see a psychiatrist.  I just want some help to see the wood from the trees.  OK I do occasionally see a DSN at the local hospital, but she doesn’t have the equipment to download the pump or meter, she has no access to Diasend. She flicks through the last few tests in my meter and asks how my infusion sites are, then sends me away telling me I’m doing OK.  Useless!


That’s not to say some people might not need to see someone specific.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans

Offline sedge

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Re: what would you ask...................
« Reply #12 on: 24 November 2018, 12:40:45 PM »
Patti - can you not ring the clinic at Truro and tell them how much you are struggling and ask for help?
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Liam

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Re: what would you ask...................
« Reply #13 on: 24 November 2018, 01:11:07 PM »
Patti can you not just login to your personal Diasend on the web for her?

I had to do that while my local hospital started "doing" pumps.

Of course if she doesn't have the training or skill to use the info that isn't much help.
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline Pattidevans

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Re: what would you ask...................
« Reply #14 on: 25 November 2018, 01:43:58 PM »
Patti - can you not ring the clinic at Truro and tell them how much you are struggling and ask for help?
When I last saw the Endo he said he'd tell Julie (the pump nurse at the pump clinic) to email me to make an appointment with her.  I have heard nothing.  Meantime I confess I cancelled an appointment with the local DSN as it fell in the middle of our friends' visit and it's been transferred to 22 Jan.  Strictly speaking the local DSN I have seen in the past has left - she was nice but useless.  They have a new one apparently but no one seemed sure when she was actually starting.  The clinic at county hospital told me to ring the new DSN and ask her about an appointment with Julie.  I got an answerphone that told me to ring county clinic.  So, when I saw the nurse at the GPs to get the results of the Hba1c the Endo had insisted I had 2 months after seeing him, i asked her to get in touch for me and ask for an appointment with Julie.  She said it was difficult because there was no one in post locally at the time.  Catch 22.
Liam
Although there's a computer on the desk she once told me she could not go on the internet with it.  She usually has a paper file that she makes notes on when I see her.  All frightfully antiquated.  It's much better at pump clinic where they have all the necessary facilities but I only get seen there once a year... or so... it was 16 months last time.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans