# DSN's...GP's...& CCG's...Why Do We Have...



## Bubbsie (Apr 21, 2017)

such a top heavy...over complicated NHS system of management... won my 'battle' with the  CCG... my GP can prescribe testing strips...on repeat as 'long as I am finding a benefit'... note to GP...used existing stocks...please issue prescription...he's away for a week...one of his colleagues will deal....48 hrs later nothing...call four times following day...told just before the surgery closes doctors too busy to deal...complain...following day call from Practice Manager...apologies...will deal with it urgently...en route to work...another call from PM...can't prescribe existing strips...will give you a new meter...only if to see DSN on Monday...at 08:50...not at local surgery...one approximately 7/8 miles away...50 strips only...Lord give me strength...minded to cancel appointment?...formal complaint?...here we go again.


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## grovesy (Apr 21, 2017)

Oh no , when you thought you had got it sorted.


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## Robin (Apr 21, 2017)

Aargh! How frustrating! I wonder if it was really a case of 'the doctors are too busy' or a case of 'the receptionist is too lazy to ask them' It's ridiculous that you've got to go to another surgery to see the DSN just to get a new meter, though.


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## Bubbsie (Apr 21, 2017)

grovesy said:


> Oh no , when you thought you had got it sorted.


Oh grovesy exhausted by this...spent so much time studying the NICE guidelines (could write a book on them)...reading the minutes of CCG meetings...drafting a letter to them...discussing with GP...feel so frustrated by these latest 'developments...have no wish to see DSN...I know how to use a meter...know how to test my BG...why she is involved I have no idea...can't decide whether to cancel the appointment with her...speak with GP...not sure I have the energy for 'fighting' the system again!...will give that some thought today...thank you.


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## Bubbsie (Apr 21, 2017)

Robin said:


> Aargh! How frustrating! I wonder if it was really a case of 'the doctors are too busy' or a case of 'the receptionist is too lazy to ask them' It's ridiculous that you've got to go to another surgery to see the DSN just to get a new meter, though.


Inexplicable Robin...no idea why she is involved...expended so much time & energy dealing with the CCG...when they agreed to the prescription...believed it was worth the effort...now...I have to take on my own GP's practice...wondering if it was...still not decided whether to cancel the appointment with DSN...so have to spend more time considering that today...blood pressure &.BG's up yesterday...so from excellent control...to elevated levels...feel quite despondent today...another coffee...another decision...what to do?


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## New-journey (Apr 21, 2017)

How frustrating for you. You have given this so much time and energy and yet still no result, that's utter rubbish. I hope whoever you see gives you the strips and more than 50! If you see the DSN you can be sure you have much knowledge than her. Big hugs


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## Northerner (Apr 21, 2017)

Far too many people there making decisions based on zero personal knowledge of why you need these strips  Everyone finding excuses when the easier - and probably cheaper - option would just be to issue you with an adequate supply of strips  This drive to 'save' is simply introducing greater inefficiency as everyone tries to defend their cost-cutting measures  It is now all-pervasive in the NHS  And yet I heard a Tory MP yesterday insist that the NHS was hunky-dory and getting everything it needs  Well, there is one thing we can all do on June 8th...


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## grovesy (Apr 21, 2017)

Bubbsie said:


> Inexplicable Robin...no idea why she is involved...expended so much time & energy dealing with the CCG...when they agreed to the prescription...believed it was worth the effort...now...I have to take on my own GP's practice...wondering if it was...still not decided whether to cancel the appointment with DSN...so have to spend more time considering that today...blood pressure &.BG's up yesterday...so from excellent control...to elevated levels...feel quite despondent today...another coffee...another decision...what to do?


Sorry to hear the stress has now pushed your levels up. Good luck with what ever you decide as your next move.


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## Carolg (Apr 21, 2017)

Oh bubbsie. Haven't been around much so missed a lot of your struggle. Hope it gets sorted soon and you get what you need without too much more of a fight


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## Amigo (Apr 21, 2017)

Sounds like she's intent on flexing her interfering muscles on this Bubbsie. Just advise both the GP and CCG have approved so it's now past her pay grade!


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## Bubbsie (Apr 21, 2017)

New-journey said:


> How frustrating for you. You have given this so much time and energy and yet still no result, that's utter rubbish. I hope whoever you see gives you the strips and more than 50! If you see the DSN you can be sure you have much knowledge than her. Big hugs


Thanks Jo...saw her once...in March this year...7 months after DX...we didn't discuss much...in control of my diabetes...GP says excellent control...we discussed my testing...she felt my testing 6 times a day was obsessive...I told her it was necessary as evidenced by my results...she wasn't happy...but...did not respond...I have no wish/desire for my diabetes care (or rather the lack of it)... to be managed by a DSN who has stated I am obsessive in managing my diabetes...would be she happier with complacency?...have to make a decision...do I keep the appointment...or not..to see...or not to see....like being in a dammed Shakespearian drama!


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## Bubbsie (Apr 21, 2017)

grovesy said:


> Sorry to hear the stress has now pushed your levels up. Good luck with what ever you decide as your next move.


Thanks grovesy.


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## Bubbsie (Apr 21, 2017)

Northerner said:


> Far too many people there making decisions based on zero personal knowledge of why you need these strips  Everyone finding excuses when the easier - and probably cheaper - option would just be to issue you with an adequate supply of strips  This drive to 'save' is simply introducing greater inefficiency as everyone tries to defend their cost-cutting measures  It is now all-pervasive in the NHS  And yet I heard a Tory MP yesterday insist that the NHS was hunky-dory and getting everything it needs  Well, there is one thing we can all do on June 8th...


Agree with all of the above Alan...just exhausted by the whole process...studying the NICE guidelines...reading CCG minutes covering this issue...drafting...redrafting my letter...waiting for the response...could do with some guidance here...do I keep the appointment on Monday...or not...if I do any necessary complaint would be strengthened by attending...shows co-operative...do I cancel it...and insist my GP deals with it...clear yet some way to go yet...another 'fight' with the system...hoping my resolve lasts...thank you.


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## Bubbsie (Apr 21, 2017)

Amigo said:


> Sounds like she's intent on flexing her interfering muscles on this Bubbsie. Just advise both the GP and CCG have approved so it's now past her pay grade!


Thanks Amigo...have to decide if going...tired of it...in the process of writing yet another letter to GP...he is back on Monday...will give it some thought on Monday.


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## Bubbsie (Apr 21, 2017)

Carolg said:


> Oh bubbsie. Haven't been around much so missed a lot of your struggle. Hope it gets sorted soon and you get what you need without too much more of a fight


Thanks Carol...just so tired of it...wonder if they like to see how much of a fight we'll make of it...then decide if they should concede...will find out soon...have the weekend to refocus...then start off again next week on a firm footing...hope all is well for you...have a good weekend.


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## Carolg (Apr 21, 2017)

Keep strong bubbsie. Can't advise but as I am sure you will, keep your records of conversations current, factual and keep calm


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## Bubbsie (Apr 21, 2017)

Carolg said:


> Keep strong bubbsie. Can't advise but as I am sure you will, keep your records of conversations current, factual and keep calm


Thanks Carol...will do


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## Barbara W (Apr 21, 2017)

What a nightmare,  after you achieved so much you must see it through now or all your energy on this will be wasted and you deserve much better. sending you big (hugs!!!) x


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## Amigo (Apr 21, 2017)

Life is hard enough Bubs without having to manage medic's competing egos too!


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## trophywench (Apr 21, 2017)

Bubbsie I would have given up and just bought them.

You do need to document your struggle to DUK though, naming names.


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## Mrs Mad Ronin (Apr 21, 2017)

I am sorry you are going through this. It's so annoying when you end up having to fight for the right care etc when the last thing you need is the stress of doing just that.I hope you get this sorted asap


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## Bubbsie (Apr 21, 2017)

Barbara W said:


> What a nightmare,  after you achieved so much you must see it through now or all your energy on this will be wasted and you deserve much better. sending you big (hugs!!!) x


Thanks Barbara...have the weekend to regroup my efforts...start again on Monday...likely to go to appointment...yes...have to agree need to see it through...will update on Monday...enjoy your weekend.


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## Bubbsie (Apr 21, 2017)

Amigo said:


> Life is hard enough Bubs without having to manage medic's competing egos too!


Yep Amigo...hit the nail firmly on the head...not sure DSN is happy with her authority being challenged...have a much better relationship with GP...going to appointment...ready for Grizelda on Monday...just watch this space...enjoy your weekend...thanks.


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## Amigo (Apr 21, 2017)

I wouldn't give up now Bubbsie, not now the GCC have given consent and your GP is in agreement. I'm used to these rotten health and funding battles and in the end it comes down to strategy. I'd arrange an appointment with the DSN and be very calm but resolute. I'd be asking her why, if the GCC and your GP are in agreement to this method of managing your diabetes, why she isn't? Ask her what's motivating her to object? Put the ball in her court. Nobody likes to be seen as unreasonable for the sake of it. 

Good luck though, these things take their toll.


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## Bubbsie (Apr 21, 2017)

Amigo said:


> I wouldn't give up now Bubbsie, not now the GCC have given consent and your GP is in agreement. I'm used to these rotten health and funding battles and in the end it comes down to strategy. I'd arrange an appointment with the DSN and be very calm but resolute. I'd be asking her why, if the GCC and your GP are in agreement to this method of managing your diabetes, why she isn't? Ask her what's motivating her to object? Put the ball in her court. Nobody likes to be seen as unreasonable for the sake of it.
> 
> Good luck though, these things take their toll.


Have an appointment with her on Monday...initially was going to cancel...now going...ready for her...all above points will be considered...put to her...yes...starting to take it's toll...had such a difficult job yesterday...had to push myself hard to concentrate...will also discuss with GP on his return...update on Monday...thanks.


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## Bubbsie (Apr 21, 2017)

Mrs Mad Ronin said:


> I am sorry you are going through this. It's so annoying when you end up having to fight for the right care etc when the last thing you need is the stress of doing just that.I hope you get this sorted asap


Thanks MMR...almost there...just one more hurdle...enjoy your weekend.


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## AndBreathe (Apr 21, 2017)

@Bubbsie - To be honest, I think you have to go on Monday and give them the opportunity to choose the way forward.  

If she swaps your meter ton one they routinely prescribe strips for, fair enough.  They're all a variation on a theme, and as T2s, we're looking at and for trends, rather than becoming fixated by specific numbers.  If, however, she decides it's not necessary, or that 5 strips per millennium is an adequate testing regime, then all you need to is pick up with the CCG again, copying your GP into the correspondence.  

That's my view, from afar.


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## Bubbsie (Apr 21, 2017)

AndBreathe said:


> @Bubbsie - To be honest, I think you have to go on Monday and give them the opportunity to choose the way forward.
> 
> If she swaps your meter ton one they routinely prescribe strips for, fair enough.  They're all a variation on a theme, and as T2s, we're looking at and for trends, rather than becoming fixated by specific numbers.  If, however, she decides it's not necessary, or that 5 strips per millennium is an adequate testing regime, then all you need to is pick up with the CCG again, copying your GP into the correspondence.
> 
> That's my view, from afar.


Thanks AndBreathe...you're absolutely right..come to that conclusion...I am attending on Monday...ready for another battle...also in the process of writing to my GP in advance of my appointment...he and I have a lot to discuss...enjoy your weekend.


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## Lucy Honeychurch (Apr 21, 2017)

How ridiculous! Talk about one step forward three steps back. I really hope you have a success on Monday, good luck!


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## grovesy (Apr 21, 2017)

Good luck for Monday.


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## Bubbsie (Apr 21, 2017)

Lucy Honeychurch said:


> How ridiculous! Talk about one step forward three steps back. I really hope you have a success on Monday, good luck!


Exactly what it feels like Lucy...ready for my appointment on Monday...hope the DSN is...thank you.


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## Bubbsie (Apr 21, 2017)

grovesy said:


> Good luck for Monday.


Thanks grovesy.


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## Wirrallass (Apr 21, 2017)

Amigo said:


> I wouldn't give up now Bubbsie, not now the GCC have given consent and your GP is in agreement. I'm used to these rotten health and funding battles and in the end it comes down to strategy. I'd arrange an appointment with the DSN and be very calm but resolute. I'd be asking her why, if the GCC and your GP are in agreement to this method of managing your diabetes, why she isn't? Ask her what's motivating her to object? Put the ball in her court. Nobody likes to be seen as unreasonable for the sake of it.
> 
> Good luck though, these things take their toll.


Well said Amigo x
WL


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## Wirrallass (Apr 21, 2017)

Bubbsie said:


> Exactly what it feels like Lucy...ready for my appointment on Monday...hope the DSN is...thank you.


I'm behind you all the way Bubbsie  - attend the appointment with DSN  - stay calm but get your point over  - who does she think she is sticking her nose in at this juncture? I am confident that you will triumph over her on Monday. Sending lots of encouraging (((hugs))) and support, good luck Bubbsie x
WL


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## Bubbsie (Apr 21, 2017)

wirralass said:


> I'm behind you all the way Bubbsie  - attend the appointment with DSN  - stay calm but get your point over  - who does she think she is sticking her nose in at this juncture? I am confident that you will triumph over her on Monday. Sending lots of encouraging (((hugs))) and support, good luck Bubbsie x
> WL


I'm ready for her WL...I just hope she is...enjoy your weekend...thank you.


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## Lucy Honeychurch (Apr 21, 2017)

Wouldn't like to be in her shoes lol!!


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## Bubbsie (Apr 21, 2017)

Just had an update about my appointment on Monday...emailed the surgery practice manager...made it clear I considered the appointment unnecessary...been managing my diabetes for nine months...with little support...no supervision...maintained 'excellent control' according to my GP...had she asked DSN about the restriction on the testing strips..as promised...the response 'With reference to the number of strips which could be prescribed on a monthly basis, I advised for you to discuss this with Julia, our Diabetic Specialist Nurse, on Monday morning as this requires clinical input and a discussion regarding when you test throughout the day'...not what was said at all...notwithstanding that...seems I am going to be interrogated about my use of testing...judgement &.technique for managing my diabetes...how 'perverse' the practice, vicariously through the DSN should want to do this now...when I am managing my diabetes to the point where my 30 day average is between 5.9 & 6 mmols...non diabetic range...happy to claim the credit for it...but...not to fund it.


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## Wirrallass (Apr 21, 2017)

****Gggrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!  You shouldn't have to be going through all this stress and turmoil Bubbsie  - I'm absolutely enraged at how you are being treated by certain individuals -  you're not a child  - how dare they  - don that Bubbsie grit on Monday and give that DSN what for  - try to remain calm tho hun  - I am perplexed that all this is happening following your discussion with your GP when he nodded his agreement  - truly amazing to say the least!!!
Try to have a relaxing weekend - if you can - take your 4 legged friend out for walkies - a glass or two  - meal out  - bubble bath  - massage  - anything to place you in the right frame of mind for Monday, take care my friend xxx
WL


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## Bubbsie (Apr 21, 2017)

Hazel said:


> I think it must be the Scottish health service.
> My DSN gave me 2 new meters, GP prescribed 300 strips every 8 weeks.
> 
> Ok I am T2 on insulin and tablets - but my care is first class.
> ...


Hazel...thank you so much for your support...it means a lot...however...I think you may have missed the point...or rather I have not explained myself adequately...T 2's not on medication that could cause a hypoglycaemic episode are routinely denied testing meters/strips on prescription... no doubt as a long term... experienced member of this forum...you will be aware the excuses given can a be as arbitrary as...too emotional...would become obsessive...etc...there is as far as I can ascertain no particular advantage to being in the Scottish health system in this respect...since you are on insulin you would be entitled to a glucose meter & testing strips automatically (the risk of hypoglycaemia )...whether in Scotland...or any other part of The United Kingdom...the driving issue is not relevant to...not to my advantage...since I use Metformin only...this would not be considered a medication that gives cause for concern with hypoglycaemia...as far as I am aware...thank you...good try Hazel...back to the drawing board for me...but I have done my homework...prepared for my appointment on Monday...so we shall see...enjoy your weekend.


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## Bubbsie (Apr 21, 2017)

wirralass said:


> ****Gggrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!  You shouldn't have to be going through all this stress and turmoil Bubbsie  - I'm absolutely enraged at how you are being treated by certain individuals -  you're not a child  - how dare they  - don that Bubbsie grit on Monday and give that DSN what for  - try to remain calm tho hun  - I am perplexed that all this is happening following your discussion with your GP when he nodded his agreement  - truly amazing to say the least!!!
> Try to have a relaxing weekend - if you can - take your 4 legged friend out for walkies - a glass or two  - meal out  - bubble bath  - massage  - anything to place you in the right frame of mind for Monday, take care my friend xxx
> WL


Blimey WL...you scared the life out of me there...right that's it...you're coming with me on Monday...I insist...she'll be terrified...made me laugh WL...thank you so much...prepared for her...will have my work head on...we shall see what happens...take care of yourself...chase up those results...enjoy your weekend.


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## Wirrallass (Apr 21, 2017)

Bubbsie said:


> Blimey WL...you scared the life out of me there...right that's it...you're coming with me on Monday...I insist...she'll be terrified...made me laugh WL...thank you so much...prepared for her...will have my work head on...we shall see what happens...take care of yourself...chase up those results...enjoy your weekend.


Thank you Bubbsie  - will do  - and you too  - will await to hear from you with a full report as to your meeting on Monday!!!x


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## Ralph-YK (Apr 21, 2017)

Bubbsie said:


> since you are on insulin you would be entitled to a glucose meter & testing strips automatically (the risk of hypoglycaemia )...whether in Scotland...or any other part of The United Kingdom.


I've met people on insulin who were not self test, knew nothing about it and didn't have a meter or strips.


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## Bubbsie (Apr 21, 2017)

Hazel said:


> Bubbs indeed I did not miss the point I merely wanted to point out that there are great DSNs out there and helpful GPs.     Yes I am vexed that you are having such a tough time, and I do wish you well.
> 
> I have not always been on insulin and I did get test strips on prescription from day one when only on Metformin, so no, I did not miss the point


Really Hazel...that was not a personal attack on you...read the post again...where on earth are you coming from?...please I have enough to deal with...without this...really.


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## mikeyB (Apr 22, 2017)

We don't have CCGs in Scotland. Fewer people to fight, fewer people getting paid out of NHS money just to be obstructive. The NHS in Scotland seems to work perfectly well without.

Just as an observation, seeing a DSN 8 miles away is luxury. Mine is a ferry ride away, so a minimum of 5 hours there and back including the appointment. Could be worse I suppose. If I lived on Barra, that would be 10 hours there and back. There's always somebody worse off.


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## Wirrallass (Apr 22, 2017)

mikeyB said:


> We don't have CCGs in Scotland. Fewer people to fight, fewer people getting paid out of NHS money just to be obstructive. The NHS in Scotland seems to work perfectly well without.
> 
> Just as an observation, seeing a DSN 8 miles away is luxury. Mine is a ferry ride away, so a minimum of 5 hours there and back including the appointment. Could be worse I suppose. If I lived on Barra, that would be 10 hours there and back. There's always somebody worse off.


Hey Mike you still awake? wouldn't it easier for your DSN to visit you  - that's a hell of a long day for you isn't it? WL


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## mikeyB (Apr 22, 2017)

The DSN is visiting Oban, from Paisley. That's as good as it gets. I really don't mind, it's just second nature to get in a ferry, part of life.


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## Bubbsie (Apr 23, 2017)

mikeyB said:


> We don't have CCGs in Scotland. Fewer people to fight, fewer people getting paid out of NHS money just to be obstructive. The NHS in Scotland seems to work perfectly well without.
> 
> Just as an observation, seeing a DSN 8 miles away is luxury. Mine is a ferry ride away, so a minimum of 5 hours there and back including the appointment. Could be worse I suppose. If I lived on Barra, that would be 10 hours there and back. There's always somebody worse off.


Mike if you have nothing positive to say...then please say nothing...this post is  not solely about me...it's about the fact that type 2's are routinely denied testing strips ...without any real justification...it's about encouraging others to challenge these decisions...it happens because few challenge the CCG's... or Health Authorities....it happens because some do not know how to challenge...what to say...how to do it...your post was not helpful...this is not about the Scottish NHS...how others are worse off...or the politics/differences between the NHS services in Scotland or any other part of the UK...telling any here that 'someone is always worse off' implies we should be happy with our lot...as for your discussion on the Ferry service...and your DSN visiting...this is not relevant here.


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## mikeyB (Apr 23, 2017)

It was a general comment, and I think it is perfectly relevant to point out the difference between the crumbling English NHS and Scotland, otherwise how are people to learn they are being conned into thinking how a health service works? 

The ferry comment was light hearted, nothing more, as should be obvious. I fully appreciate that getting to the ferry with severe mobilty problems, and getting off the other side and to the hospital is as nothing compared to a drive across North London. I apologise if I gave the wrong impression.


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## Bubbsie (Apr 23, 2017)

mikeyB said:


> It was a general comment, and I think it is perfectly relevant to point out the difference between the crumbling English NHS and Scotland, otherwise how are people to learn they are being conned into thinking how a health service works?
> 
> The ferry comment was light hearted, nothing more, as should be obvious. I fully appreciate that getting to the ferry with severe mobilty problems, and getting off the other side and to the hospital is as nothing compared to a drive across North London. I apologise if I gave the wrong impression.


Mike I have reported your comments to the moderators...you have completely obscured the issue here...this is about members of this forum...who might want to address a real problem here...obtain necessary supplies they need to manage their diabetes...those being treated badly... less fairly... simply because the CCG's face no effective challenge...because many do not complain...you know full well I do not live in North London...or in London...how disingenuous of you to attempt to incite sympathy by suggesting I have no sympathy/empathy towards those who are disabled...incapacitated... suffering from limited mobility... you should be ashamed of those comments....Mike you have tried to do this to me before...and failed miserably...you posted on this thread knowing you were on my ignored list...believing I would not see it...how cowardly is that...how selfish of you to divert attention away from an issue so important..so .crucial to many members here...for purely personal reasons...as for the hollow hint of an apology Mike...grow up...we are dealing with serious matters here.


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## mikeyB (Apr 23, 2017)

You are paranoid. I repeat, I made those comments to highlight the difference between Scotland and England in the same serious matters you are banging on about. It is a serious  matter that there is a difference between a well run health service and one which is obsessed with scrimping money to the detriment of patients.


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## Copepod (Apr 23, 2017)

I have no intention of closing this thread. People in different locations do indeed face different challenges, based on politics, geography, personal circumstances etc. I hope your appointment goes well @Bubbsie, wherever it takes place. Please let us know what happens.


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## Bubbsie (Apr 23, 2017)

trophywench said:


> Bubbsie I would have given up and just bought them.
> 
> You do need to document your struggle to DUK though, naming names.


Jenny...I have documented all of it...how perverse...the CCG say 'yes' (to my surprise)...the GP says 'yes'...yet the DSN wants to have 'clinical input' and question me on 'my use of testing throughout the day'...yes would be easy to buy them...but an important point of principle here...need to see it through.


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## Bubbsie (Apr 23, 2017)

Copepod said:


> I have no intention of closing this thread. People in different locations do indeed face different challenges, based on politics, geography, personal circumstances etc. I hope your appointment goes well @Bubbsie, wherever it takes place. Please let us know what happens.


Thank you Copecod...this is an important issue...it should not be trivialised...or obscured...I have challenged the CCG...they have conceded my GP can prescribe testing strips...and continue to prescribe them...'as long as I am finding a benefit from them'...just a matter of navigating the local surgery's protocol...in the meantime I am drafting a standard letter for others to use as a guide for challenging CCG & Health Authorities blanket refusal to supply testing strips on prescription...for those who want/need to test.


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## everydayupsanddowns (Apr 23, 2017)

Hoping we can keep things helpful and supportive in this thread, whatever our situations and differences in opinion.


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## Copepod (Apr 23, 2017)

Please be calm and civil overnight. I need to sleep now, after 2 nights sleeping in car to work at a race, and working all this week too.


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## Copepod (Apr 24, 2017)

I hope your appointment goes well, @Bubbsie and that the DSN sorts out your prescription for blood glucose strips. It's probably worth taking your records to show, if needed. Please let us know how you get on.


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## grovesy (Apr 24, 2017)

Good Luck for the appointment.


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## Bubbsie (Apr 24, 2017)

Copepod said:


> I hope your appointment goes well, @Bubbsie and that the DSN sorts out your prescription for blood glucose strips. It's probably worth taking your records to show, if needed. Please let us know how you get on.


Thank you Copepod...thought very long & hard about this...been an exhausting process...cancelled the appointment...emailed the practice...letter sent to the GP...decided had agreement from CCG...and GP...will deal with him...DSN wants to 'question me on my use of testing strips through out the day'...have read the NICE guidelines to the point where I believe I could deliver a  critique on them...CCG guidelines are firmly imprinted in my memory...nothing to restrict the amount of strips prescribed in either of those two documents...have previously had a discussion with this DSN...once in the past year...she described my testing 6 times a day as 'obsessive'...not prepared to be bullied into setting a precedent here...just waiting for the wrath of competing egos in our local practice to begin...will update when the flak stops!


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## Amigo (Apr 24, 2017)

I think that's a wise strategy Bubbsie. At the end of the day you're a patient trying to fight your own battle with diabetes and shouldn't need to be the sacrificial lamb for the nurse to practice her outdated thinking on. You know this consult wasn't about her personal interest in you but more to flex her objection to the whole principle of type 2's receiving strips. That internal politicking shouldn't be your concern. The people who out-rank her have given their decision and she was looking to find 'clinical reasons' to scupper it I think. She's miffed because she's been cut out of the loop.

Let them fight it out without using you in this mercenary way. Sincerely hope it works out.


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## New-journey (Apr 24, 2017)

Bubbsie said:


> Thank you Copepod...thought very long & hard about this...been an exhausting process...cancelled the appointment...emailed the practice...letter sent to the GP...decided had agreement from CCG...and GP...will deal with him...DSN wants to 'question me on my use of testing strips though out the day'...have read the NICE guidelines to the point where I believe I could deliver a  critique on them...CCG guidelines are firmly imprinted in my memory...nothing to restrict the amount of strips prescribed in either of those two documents...have previously had a discussion with this DSN...once in the past year...she described my testing 6 times a day as 'obsessive'...not prepared to be bullied into setting a precedent here...just waiting for the wrath of competing egos in our local practice to begin...will update when the flak stops!





Good luck! You sound very prepared and ready, know your rights and all the issues surrounding tests strips. I am sure you won't let the DSN undermine and judge you, thinking of you.


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## Bubbsie (Apr 24, 2017)

Okay...no doubt everyone who has been supportive on this matter... will be relieved to hear they no longer have to listen to me continually whinging on about this sorry saga...the update is...I have just had a call from my GP...full & frank discussion...not going to see the DSN...have an appointment with him on Wednesday...prescription for the testing strips done...he will get the meter from one of the nurses...provide me with the necessary  when I see him...thanks to all who those who offered support...good luck to those who have yet to challenge refusals to provide testing meter/strips in future...if anyone does need some help...or just some advice...I can provide a copy of my letter for guidance...finally this melodrama has come to its conclusion.


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## grovesy (Apr 24, 2017)

Glad you are getting your meter and strips.


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## Robin (Apr 24, 2017)

Result! Glad you've got a good outcome.


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## Bubbsie (Apr 24, 2017)

grovesy said:


> Glad you are getting your meter and strips.


Thanks grovesy...off for a quick nap...shattered.


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## Bubbsie (Apr 24, 2017)

Robin said:


> Result! Glad you've got a good outcome.


Thank you Robin...hope others will not be deterred from following suite...have a good day.


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## Steff (Apr 24, 2017)

Bubbsie your a champion x well done and have a nice nap m8


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## Bubbsie (Apr 24, 2017)

Steff said:


> Bubbsie your a champion x well done and have a nice nap m8


Not sure about that Steff...possibly giving me too much credit there...but...thank you for your support...relieved it's come to an end...hoping others will be encouraged to do likewise in similar circumstances.


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## Barbara W (Apr 24, 2017)

Well done and well said x


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## Wirrallass (Apr 24, 2017)

Bubbsie this is wonderful news  - so pleased for you  - you fought for your right and you triumphed so very well done  - and thank you for the offer of a copy of a standard letter should any of us find we may need one in the future. Now go grab yourself a coffee! Xx
WL


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## Amigo (Apr 24, 2017)

I suspect this has exacted an emotional and physical toll on you Bubbsie. It's done and they've seen sense. Have a rest now.


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## Bubbsie (Apr 24, 2017)

Barbara W said:


> Well done and well said x


Thank you Barbara.


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## Bubbsie (Apr 24, 2017)

Amigo said:


> I suspect this has exacted an emotional and physical toll on you Bubbsie. It's done and they've seen sense. Have a rest now.


Thanks Amigo...relieved to put this to bed (pun intended).


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## Bubbsie (Apr 24, 2017)

wirralass said:


> Bubbsie this is wonderful news  - so pleased for you  - you fought for your right and you triumphed so very well done  - and thank you for the offer of a copy of a standard letter should any of us find we may need one in the future. Now go grab yourself a coffee! Xx
> WL


Thanks WL...had several already...switching off for a couple of hours...get those results...update when ready.


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## Copepod (Apr 24, 2017)

Good result.


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## everydayupsanddowns (Apr 24, 2017)

Bubbsie said:


> DSN wants to 'question me on my use of testing strips through out the day'...have read the NICE guidelines to the point where I believe I could deliver a  critique on them...CCG guidelines are firmly imprinted in my memory...nothing to restrict the amount of strips prescribed in either of those two documents...have previously had a discussion with this DSN...once in the past year...she described my testing 6 times a day as 'obsessive'...not prepared to be bullied into setting a precedent here...just waiting for the wrath of competing egos in our local practice to begin...will update when the flak stops!



Pleased you have managed to achieve the outcome you wanted Bubbsie, but confess I am slightly confused by your reference to NICE guidance, I hadn't read it since it was out for consultation before the 2015 update (NG28), but my memory was that (rather disappointingly) test strips for people on D&E and/or metformin were not recommended. Whether we think that is right for different individuals is a completely different matter of course, but the guideline development group who reviewed the evidence did not find data that supported BG testing apart from to detect hypoglycaemia.

_1.6.13 Do not routinely offer self-monitoring of blood glucose levels for adults with type 2 diabetes unless:_

_the person is on insulin *or*_
_there is evidence of hypoglycaemic episodes *or*_
_the person is on oral medication that may increase their risk of hypoglycaemia while driving or operating machinery *or*_
_ 
the person is pregnant, or is planning to become pregnant. For more information, see the NICE guideline on diabetes in pregnancy. *[new 2015]*_
'Do not routinely offer' is pretty much NICE's firmest 'no'. *We* can see that BG testing works brilliantly for motivated individuals - but the reviewed research data (most likely a blinded RCT which compares people who BG test versus those who don't and for whom all other factors are more or less the same) did not show much or any benefit.

This makes it particularly surprising that you have been able to secure a testing routine of 6x per day - there are many T1s in the UK who have eyebrows raised when requesting BG strips at that level of intensity, including those on pumps and who are at risk of severe hypoglycaemia/DKA/the wrath of the DVLA blah blah blah. It also probably explains why your DSN considers your testing routine 'obsessive' (whatever *that* means). It might be worth getting infront of them and explaining exactly how you are using the data the strips are giving you, and how it changes from day-to-day which makes the continual use beneficial.

As I say, pleased that you have secured the strips, but just wanted to offer some context for other people facing blanket 'No' from their GP. Well done for persevering and not taking no for an answer


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## Amigo (Apr 24, 2017)

everydayupsanddowns said:


> Pleased you have managed to achieve the outcome you wanted Bubbsie, but confess I am slightly confused by your reference to NICE guidance, I hadn't read it since it was out for consultation before the 2015 update (NG28), but my memory was that (rather disappointingly) test strips for people on D&E and/or metformin were not recommended. Whether we think that is right for different individuals is a completely different matter of course, but the guideline development group who reviewed the evidence did not find data that supported BG testing apart from to detect hypoglycaemia.
> 
> _1.6.13 Do not routinely offer self-monitoring of blood glucose levels for adults with type 2 diabetes unless:_
> 
> ...



That's interesting everydays (though I suspect by now Bubbsie must feel at screaming pitch with the whole subject). I certainly would! 

The expression 'do not routinely offer' may well be the way NICE actually say, 'not on your nelly' but it leaves room for individual manoeuvre and deviation none the less. It's not a definitive, 'under no circumstances' because clearly there must be situations where clinically, not just hypoglaecemia but also hyperglycaemia is a serious threat even for people who are doing this without medication. And indeed some people cannot either tolerate the medication well or it fights a hard battle with other medication/conditions.

This seems a much bigger, wider and more national issue than individual need however but at the moment it seems that we can only fight this refusal on a case by case basis. And some people will feel unable to do that or have inflexible, judgemental surgeries. Money is driving this refusal because I find it hard to believe any responsible clinician feels patients should have absolutely no monitoring input into their own diabetic care.

The argument that even if levels are high, we can't do anything about it is dangerous tosh and in my case, every infection which diabetes fuels, has the potential to finish me off.  When I was developing sepsis, it was the sudden and uncharacteristic BG hike which alerted me. Waiting for an annual Hba1c wouldn't have helped! 

We seem caught in a national outrage against diabetes but given little means to self manage it and reduce the crippling costs of treating Diabetic complications. Even some type 1's suffer this ridiculous battlefield of under prescribing.

The weight of anecdotal evidence on this site of the type 2's who have managed to spectacularly turn round their conditions by self surveillance and self management needs to be collated in a bigger campaign and I hope DUK can assist with this.


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## everydayupsanddowns (Apr 24, 2017)

Amigo said:


> This seems a much bigger, wider and more national issue than individual need however but at the moment it seems that we can only fight this refusal on a case by case basis. And some people will feel unable to do that or have inflexible, judgemental surgeries. Money is driving this refusal because I find it hard to believe any responsible clinician feels patients should have absolutely no monitoring input into their own diabetic care.
> 
> ....
> 
> The weight of anecdotal evidence on this site of the type 2's who have managed to spectacularly turn round their conditions by self surveillance and self management needs to be collated in a bigger campaign and I hope DUK can assist with this.



Absolutely agree with you - and Bubbsie has certainly managed to buck the trend, which should be an encouragement to others.

What frustrates me is that I am yet to see an RCT which accurately reflects what we see on the forum - that is a 'Jennifer's Advice' or 'Test Review Adjust' checking before/after meals followed by dietary adjustment, reducing or modifying carb intake for improved BG outcomes.

Some of the _SMBG in T2_ trials seem to involve one test a day at a regular time, or multiple tests, but people must stick to their (unhelpful?) prescribed diet advice. So they keep seeing dreadful BG results, their A1c remains unchanged and they find the testing bothersome, painful and depressing. Well hardly surprising given the trial set-up!

The other possibility, of course (and I think this is probably the position I have come to believe) is that test strips for ALL T2s quite possibly would *not* work. In order to derive benefit you need to want to actively manage your BGs and use the data you receive with each and every BG check to evaluate and improve your approach. And there are many people who simply won't want to bother doing that - who would rather take the tablets and carry on without thinking about it.

For those motivated forum-type people though, there is no doubt in my mind that BG strips are a worthwhile investment and will vastly improve quality of life now, and reduce complication risk in the future.

Particularly since for many T2s on the forum, the initial intense period of testing is usually short-lived. And once foods and activity have been observed over 6-12 months or so, BG checks can fall back into much more of an occasional monitoring pattern - unless things change or new foods are tried.


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## grovesy (Apr 24, 2017)

Am i right in thinking that some of the reasearcher that was done people were not given any advice to test effectivly?


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## Bubbsie (Apr 24, 2017)

everydayupsanddowns said:


> Pleased you have managed to achieve the outcome you wanted Bubbsie, but confess I am slightly confused by your reference to NICE guidance, I hadn't read it since it was out for consultation before the 2015 update (NG28), but my memory was that (rather disappointingly) test strips for people on D&E and/or metformin were not recommended. Whether we think that is right for different individuals is a completely different matter of course, but the guideline development group who reviewed the evidence did not find data that supported BG testing apart from to detect hypoglycaemia.
> 
> _1.6.13 Do not routinely offer self-monitoring of blood glucose levels for adults with type 2 diabetes unless:_
> 
> ...



Mike I did not want to over complicate issues here...I had no intention of including either the NICE guidelines... CCG directives...clinical data...statistics or unproven theories ...I merely referred to them...this was to be a simple...uncomplicated thread...hoping to encourage other forum members to challenge refusals...not get bogged down trying to understand masses of over complicated information thrown at them to head off any hope of an effective challenge...I have studied the NICE guidelines to the point where I could deliver you a critique on them without notice...the CCG directives...again...could write a book on them...I would say yours & the CCG's interpretation is  narrow &.inaccurate... a restricted analysis of The NICE guidelines...I agree entirely with Amigo's points...she is spot on (for those interested please see her post)...I am used to reading through volumes of information...dry...turgid.. verbose legislation...done it for almost thirty years in the course of my work...not difficult for me to extract the relevant information...the salient points...others here do not have that advantage...whilst we are all entitled to our opinion...please keep this simple...I sought to draw no distinction between type 1 & 2 diabetics...as often said 'we are all fighting the same battle'...members of this forum...others can challenge unfair...inequitable treatment as individuals...in the absence of any other any effective challenge... from charities...pressure groups...large organisations...what better time to take this up with your MP...snap election...what 'politico' wouldn't want to be seen in a favourable light at this time?...please lets keep this simple...not obscure the message...encourage other to believe/have confidence in their ability to not take 'NO' for an answer...this really is my last word on it,


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## everydayupsanddowns (Apr 24, 2017)

No worries Bubbsie. I was simply offering clarification for others over what the guidelines said. Potentially confusing as you said



Bubbsie said:


> ...have read the NICE guidelines ...CCG guidelines...nothing to restrict the amount of strips prescribed in either of those two documents



and I just wanted to make sure others who had not read the guidance in the depth that you had that NICE explicitly say not to routinely use SMBG for T2. Frustrating - but there it is.

I didn't want people to think that a Dr/Nurse who tells them 'NICE says no' was trying to pull the wool over their eyes was all. Did not intend to cause upset.


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## Bubbsie (Apr 24, 2017)

Amigo said:


> That's interesting everydays (though I suspect by now Bubbsie must feel at screaming pitch with the whole subject). I certainly would!
> 
> The expression 'do not routinely offer' may well be the way NICE actually say, 'not on your nelly' but it leaves room for individual manoeuvre and deviation none the less. It's not a definitive, 'under no circumstances' because clearly there must be situations where clinically, not just hypoglaecemia but also hyperglycaemia is a serious threat even for people who are doing this without medication. And indeed some people cannot either tolerate the medication well or it fights a hard battle with other medication/conditions.
> 
> ...


Amigo...couldn't have put it better myself...wasn't even going to utter another word on this matter...just HAD to say a huge thank you for such an eloquent response...thank you.


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## mikeyB (Apr 24, 2017)

The NICE recommendations don't preclude the prescription of test strips for Type 2, but it seems that 'Do not routinely' I'd being interpreted as 'never.' If a well motivated type 2 asks for strips so that they can accurately adjust their diet, or discover which foods cause spikes, then surely they should not be refused, and should be supported by GPs. The pernicious CCGs seem to be to blame for this situation, so it's time that DUK had discussions with CCGs, not just with  NICE.


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## Bubbsie (Apr 26, 2017)

Presumed this matter had come to its natural conclusion...not quite...been an exhausting couple of weeks...fighting off the CCG...disseminating the NICE guidelines...refusing to be strong armed by the DSN...prepared for it...finally got a favourable decision...but this afternoon yet another 'fight' with the goodly Dr Max Medication...new meter supplied...'now about your use of testing strips...it is rather a lot d'you think'...having already agreed to supply 100 per month...he surprised me...so deep breath... I put my best WORK head on...full & frank discussion...when I left he had issued me with a script for 300 testing strips per month...on repeat...with multi coloured lancets to boot...no more need be said!!!


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## Amigo (Apr 26, 2017)

Bubbsie said:


> Presumed this matter had come to its natural conclusion...not quite...been an exhausting couple of weeks...fighting off the CCG...disseminating the NICE guidelines...refusing to be strong armed by the DSN...prepared for it...finally got a favourable decision...but this afternoon yet another 'fight' with the goodly Dr Max Medication...new meter supplied...'now about your use of testing strips...it is rather a lot d'you think'...having already agreed to supply 100 per month...he surprised me...so deep breath... I put my best WORK head on...full & frank discussion...when I left he had issued me with a script for 300 testing strips per month...on repeat...with multi coloured lancets to boot...no more need be said!!!



Wow Bubbsie, 300 testing strips a month is a hell of a result. How did you convince him you need to test nearly 10 times a day? Respect!


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## grovesy (Apr 26, 2017)

Glad you managed to get a prescription.


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## Lucy Honeychurch (Apr 26, 2017)

Good work!


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## everydayupsanddowns (Apr 26, 2017)

Hope you can find a way to reduce your testing schedule in time @Bubbsie - while maintaining your current results, of course. 10x a day is very hard on the fingers! Hopefully in time you will be able to give them a bit of a rest.


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## New-journey (Apr 26, 2017)

Bubbsie said:


> Presumed this matter had come to its natural conclusion...not quite...been an exhausting couple of weeks...fighting off the CCG...disseminating the NICE guidelines...refusing to be strong armed by the DSN...prepared for it...finally got a favourable decision...but this afternoon yet another 'fight' with the goodly Dr Max Medication...new meter supplied...'now about your use of testing strips...it is rather a lot d'you think'...having already agreed to supply 100 per month...he surprised me...so deep breath... I put my best WORK head on...full & frank discussion...when I left he had issued me with a script for 300 testing strips per month...on repeat...with multi coloured lancets to boot...no more need be said!!!


Fantastic! Well done you, hope you can relax and recover now from all the stress and hard work.


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## New-journey (Apr 26, 2017)

everydayupsanddowns said:


> Hope you can find a way to reduce your testing schedule in time @Bubbsie - while maintaining your current results, of course. 10x a day is very hard on the fingers! Hopefully in time you will be able to give them a bit of a rest.


@everydayupsanddowns This is new to me that ten times may be too much. I have days when I test ten times, especially at the moment with two long drives a day, high stress and irregular meals, is that too much? My fingers are fine.


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## Wirrallass (Apr 26, 2017)

Brilliant news Bubbs  - you earned that response from your GP  - glad he finally succumbed  - had it not been for your Bubbsie grit - determination & constant flow of correspondence to all and sundry I doubt you would have succeeded.
VERY WELL DONE. Drinks on the house?
WL


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## Bubbsie (Apr 26, 2017)

Amigo said:


> Wow Bubbsie, 300 testing strips a month is a hell of a result. How did you convince him you need to test nearly 10 times a day? Respect!


Amigo...the bizarre thing is I only test 6 times per day...made him aware of that...occasionally will test a couple more when trying to find different foods that suit the diabetes...and keep my INR levels balanced...but...just occasionally...so no idea why after out discussion he prescribed 300...will wait until used them...before ordering on the repeat...going to see him on the 8th of May...another matter...will discuss it with him then...don't need 300 strips per month...think I got him a bit rattled with my critique of the NICE guidelines...poor man!


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## Bubbsie (Apr 26, 2017)

grovesy said:


> Glad you managed to get a prescription.


Thanks grovesy,


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## Bubbsie (Apr 26, 2017)

wirralass said:


> Brilliant news Bubbs  - you earned that response from your GP  - glad he finally succumbed  - had it not been for your Bubbsie grit - determination & constant flow of correspondence to all and sundry I doubt you would have succeeded.
> VERY WELL DONE. Drinks on the house?
> WL


Can offer you a cuppa builders WL?...thanks


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## everydayupsanddowns (Apr 26, 2017)

I am only going on what I have seen from other T2s over the years @New-journey  - that often an initial intensive period of checking before and after meals really helps establish how they react to foods and that their 'spike time' usually is. Many then seem able to drop back to a more 'maintenance' level.

But people are all different, and different strategies work for different people. And as you point out DVLA guidance can add several checks a day into the mix for drivers on insulin. Guidance for T1s says that 4x should be minimum, and 6-8 or 10+ is cost effective too.

Personally I can easily check 6-10x a day, but that is because my BG variation can be significant even if I eat all the same things and with doses that I know 'work'. E.g. Last night I shot up from 4.8 to 13.2 over the course of an hour, for no identifiable reason, then stayed in double figures until after lunch today despite multiple corrections, and carefully dosed meals to known 'working' ratios.

I've been checking much more intensively for around 6 years, but quite a lot of that is to do with hypos. And if my BGs were more stable, and hypoglycaemia was not so much of a risk, I would check less often if I could. In the bad old days I would often only check 8-10 times a *week* not a day, but repeated low level hypos really did for my hypo warning signs and so a more detailed monitoring and tweaking basal/ratios/correction factors on an ongoing basis serves me much better these days.

Lots of BG checks are no fun though, are they?


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## Bubbsie (Apr 26, 2017)

everydayupsanddowns said:


> Hope you can find a way to reduce your testing schedule in time @Bubbsie - while maintaining your current results, of course. 10x a day is very hard on the fingers! Hopefully in time you will be able to give them a bit of a rest.


Mike I don't test ten times a day...six at most...occasionally a couple more...I take warfarin...so need to make sure the food I eat is suitable for my diabetes...in addition to keeping my  my INR levelsbalanced...think it may have been my quoting the CCG directives...I seemed to be more familiar with them than he was...yet...he is bound  by them when prescribing...I have another appointment with him soon...will discuss it with him then...I don't need that amount.


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## Bubbsie (Apr 26, 2017)

Lucy Honeychurch said:


> Good work!


Thank you Lucy.


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## Bubbsie (Apr 26, 2017)

New-journey said:


> @everydayupsanddowns This is new to me that ten times may be too much. I have days when I test ten times, especially at the moment with two long drives a day, high stress and irregular meals, is that too much? My fingers are fine.


I think Mike is surprised since I am type 2 and not dependant on insulin...or other oral anti-diabetic medication that could cause a hypoglycaemic episode NJ...I test 6 times per day...so don't need 300 per month...think after our discussion he got himself in a bit of a Tizzy...will speak to him at my next appointment...happy for him to reduce the prescription.


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## Ralph-YK (Apr 26, 2017)

Congratulations


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## Lucy Honeychurch (Apr 26, 2017)

When I was first diagnosed I was only prescribed 50 strips and needles a month, ridiculous seeing I'm on MDI plus correction doses as my bgs were high.


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## Bubbsie (Apr 26, 2017)

Ralph-YK said:


> Congratulations


Thanks Ralph.


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## Bubbsie (Apr 26, 2017)

Lucy Honeychurch said:


> When I was first diagnosed I was only prescribed 50 strips and needles a month, ridiculous seeing I'm on MDI plus correction doses as my bgs were high.


That's why we have to challenge them Lucy...if we say nothing...just accept it...it continues...are you getting more now?...what you need...I hope so.


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## Lucy Honeychurch (Apr 26, 2017)

Bubbsie said:


> That's why we have to challenge them Lucy...if we say nothing...just accept it...it continues...are you getting more now?...what you need...I hope so.



Yes thanks @Bubbsie, I get plenty now, but I really didn't need all that hassle after being hospitalised with a DKA, you'd have thought it would have been obvious to the surgery that I needed a lot more than that.


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## Bubbsie (Apr 26, 2017)

Lucy Honeychurch said:


> Yes thanks @Bubbsie, I get plenty now, but I really didn't need all that hassle after being hospitalised with a DKA, you'd have thought it would have been obvious to the surgery that I needed a lot more than that.


None of it surprises me anymore Lucy.


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## Lucy Honeychurch (Apr 26, 2017)

I thought it was just my bad luck, but it's apparent from reading posts on here that it's not


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## Barbara W (Apr 27, 2017)

Well done Bubbsie.


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## Bubbsie (Apr 27, 2017)

Lucy Honeychurch said:


> I thought it was just my bad luck, but it's apparent from reading posts on here that it's not


No...its not Lucy...shameful really.


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## Bubbsie (Apr 27, 2017)

Barbara W said:


> Well done Bubbsie.


Thanks Barbara...glad it's all done now.


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## Bubbsie (Apr 27, 2017)

New-journey said:


> Fantastic! Well done you, hope you can relax and recover now from all the stress and hard work.


Thanks JO...yep so good to move on from it...just get on with things.


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## Bubbsie (Apr 27, 2017)

Forgot to mention I have drafted a template of my letter to the Clinical Commissioning Group...if anyone who has a similar difficulty  could make use of it...please send me a pm...I'll be happy to provide a copy...thank you all so much for all your positive support.


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