Today.

[Bill Stewardson]

Today I see the DN,, should be interesting. First thing I will do is hand back the Gliclazide that made me so very ill, obviously I will exude gratitude.

Then I will listen to the advice about healthy eating and exercise and obesity, then I will walk away hoping that I don't have to be told about the template they work to again.

Over the last few weeks Ive conversed with professors, nurses, GPS, consultants, and others and they have ALL fallen back on the following advice "contact DUK".
I get the feeling that DUK in this context is a gateway to the NHS and operates to endorse the NHS view.

I have a meeting tomorrow with a local GP and various other local D group organisers etc, I get the feeling the end product will be " Contact DUK"

Here is one example of the sort of thing I want to put forward.

July 2nd I call 111 (due to Gliclazide) and call fielder tells me "you should be self testing four times every day" - within one hour Dr at the hospital tells a very ill me " you should not be self testing it's a waste of time"

No offence to the people at DUK , but is there any point me ringing them, where else can the sort of stuff mentioned above be taken ??

 

[DaveB]

Hi. It's very rare for Gilclazide to make you fell ill; what was the problem with it. I think many of us find we need to learn what works for us, use this forum and the other one and not rely on DUK or the NHS beyond a certain level. I have found far more information on the forums over the years than I have ever got from my surgery or DUK but it's your choice. With regard to testing you should be testing as little or as often that you find gives you the information you need to know what your sugar level will be or currently is; simple.

 

[Copepod]

Today I see the DN,, should be interesting. First thing I will do is hand back the Gliclazide that made me so very ill, obviously I will exude gratitude.

Then I will listen to the advice about healthy eating and exercise and obesity, then I will walk away hoping that I don't have to be told about the template they work to again.

Over the last few weeks Ive conversed with professors, nurses, GPS, consultants, and others and they have ALL fallen back on the following advice "contact DUK".
I get the feeling that DUK in this context is a gateway to the NHS and operates to endorse the NHS view.

I have a meeting tomorrow with a local GP and various other local D group organisers etc, I get the feeling the end product will be " Contact DUK"

Here is one example of the sort of thing I want to put forward.

July 2nd I call 111 (due to Gliclazide) and call fielder tells me "you should be self testing four times every day" - within one hour Dr at the hospital tells a very ill me " you should not be self testing it's a waste of time"

No offence to the people at DUK , but is there any point me ringing them, where else can the sort of stuff mentioned above be taken ??

That's a question for the Ask Diabetes UK thread. I hope that tagging @Hannah DUK will lead to a similar response. I'd be interested to learn the response, too. In a way, I'm surprised that NICE guidelines weren't mentioned.

 

[Bill Stewardson]

Hi. It's very rare for Gilclazide to make you fell ill; what was the problem with it. I think many of us find we need to learn what works for us, use this forum and the other one and not rely on DUK or the NHS beyond a certain level. I have found far more information on the forums over the years than I have ever got from my surgery or DUK but it's your choice. With regard to testing you should be testing as little or as often that you find gives you the information you need to know what your sugar level will be or currently is; simple.

Yes it is simple , so simple that DNs and the like all tell you not to do it.

Any advice given in forums (including mine) is well meant but medically unqualified, so therefore just opinion.

This is a problem.

 

[Bubbsie]

It's not 'simple'... the advice given here may be 'unqualified'...however it is given with good intentions...based on members own experience of living with diabetes...managing their conditions...there is often a diversity of opinion...discussion... a choice to take the advice or not.. it's not mandatory...often I have been disappointed with DUK's response to certain issues...one example.their response on the testing campaign focused on Type1's...included type 2's dependant on medication which may induce hypoglycaemia...as someone who uses Metformin only there was nothing in it for me (my opinion)...but...I discovered I could tackle that matter myself...shared my experience with others who did similar...grew confident I could manage...it is easy to be critical of DUK...I include myself in that...diabetes (as we know) is largely up to us to manage individually....I'm achieving that (for now) as a direct result of joining the forum provided...hearing other members experiences... .I welcome discussion...the diversity of opinion...for me it's a huge learning curve...advice given is always considered...some of it implemented...challenge the CCG's...read the NICE guidelines...write to them...include your GP's in that...the reliance placed on DUK by health care professionals is frustrating...overwhelming...charity should be in addition to...not instead of...but...it's what we have...so lets take the positives...try to work with those...use the DUK platform...it's the only 'voice' many of us here have...before joining the forum I knew so little...different now...and still learning here everyday...I'm grateful for that.

 

[Bill Stewardson]

It's not 'simple'... the advice given here may be 'unqualified'...however it is given with good intentions...based on members own experience of living with diabetes...managing their conditions...there is often a diversity of opinion...discussion... a choice to take the advice or not.. it's not mandatory...often I have been disappointed with DUK's response to certain issues...one example.their response on the testing campaign focused on Type1's...included type 2's dependant on medication which may induce hypoglycaemia...as someone who uses Metformin only there was nothing in it for me (my opinion)...but...I discovered I could tackle that matter myself...shared my experience with others who did similar...grew confident I could manage...it is easy to be critical of DUK...I include myself in that...diabetes (as we know) is largely up to us to manage individually....I'm achieving that (for now) as a direct result of joining the forum provided...hearing other members experiences... .I welcome discussion...the diversity of opinion...for me it's a huge learning curve...advice given is always considered...some of it implemented...challenge the CCG's...read the NICE guidelines...write to them...include your GP's in that...the reliance placed on DUK by health care professionals is frustrating...overwhelming...charity should be in addition to...not instead of...but...it's what we have...so lets take the positives...try to work with those...use the DUK platform...it's the only 'voice' many of us here have...before joining the forum I knew so little...different now...and still learning here everyday...I'm grateful for that.

Yep, agree with every word.

Two things have jumped out at me since my diagnosis.

Firstly, the "qualified" people, i.e. those who's profession it is as are not singing off the same song sheet.Ive had far too many examples of that for it to be coincidental.

Secondly , I have learned far more from this forum than I have anywhere else, which brings its own risks. Well meant advice does not mean good advice, should it really be the case that due to unsatisfactory professional advice people learn from a forum ??

I have no idea who owns the responsibility for this, and am not (yet) attaching blame to anyone. It seems to me that this template that is used may well fit a lot of people, question therefore is ,, what about the others ??

 

[Bubbsie]

Yep, agree with every word.

Two things have jumped out at me since my diagnosis.

Firstly, the "qualified" people, i.e. those who's profession it is as are not singing off the same song sheet.Ive had far too many examples of that for it to be coincidental.

Secondly , I have learned far more from this forum than I have anywhere else, which brings its own risks. Well meant advice does not mean good advice, should it really be the case that due to unsatisfactory professional advice people learn from a forum ??

I have no idea who owns the responsibility for this, and am not (yet) attaching blame to anyone. It seems to me that this template that is used may well fit a lot of people, question therefore is ,, what about the others ??

Bill...Diabetes is not 'fault based'...and is not the only condition that dos not always get the attention it deserves...as for the advice being 'unqualified'...let me give you my definition...the only advice here that I consider to be unqualified...it that given by non medics on medical issues...clearly if you are not a doctor...healthcare professional than any advice you give on the use of medication...whether to stop it...increase/decrease your dose without seeking medical advice... that in my opinion would be unqualified...if someone tells me their meds make them ill...make them feel worse...the disadvantage of taking it outweighs any benefit they derive...for me that is 'qualified'...their experience...they are entitled to share that...however...if they encourage others to act on such advice...a step to far for me...why shouldn't people learn from a forum...that's the whole point of it...otherwise it has no real purpose?...time after time we hear diabetes is not a 'one size fits all' condition..as said it's not fault based...no one is blame...we have to take overall responsibility for changing the system if we are not satisfied with it...it may appear that some just accept their lot...do nothing...what's the point...yet...many choose to challenge the system/inequity quietly...behind the scenes...chip away at the obstructions slowly...carefully...with considered thought...some are more direct...others 'armchair warriors'...members may not know how to get what they need...not have the ability...that's where the forum comes into it's own...we each give what we can...whether such advice is adopted...implemented...that's up to us...the value of it being here...being a member... for me far outweighs my dissatisfaction with some of the DUK position/stance on areas in diabetes care (the lack of care primarily) I feel passionate about.

 

[Bill Stewardson]

Bill...Diabetes is not 'fault based'...and is not the only condition that dos not always get the attention it deserves...as for the advice being 'unqualified'...let me give you my definition...the only advice here that I consider to be unqualified...it that given by non medics on medical issues...clearly if you are not a doctor...healthcare professional than any advice you give on the use of medication...whether to stop it...increase/decrease your dose without seeking medical advice... that in my opinion would be unqualified...if someone tells me their meds make them ill...make them feel worse...the disadvantage of taking it outweighs any benefit they derive...for me that is 'qualified'...their experience...they are entitled to share that...however...if they encourage others to act on such advice...a step to far for me...why shouldn't people learn from a forum...that's the whole point of it...otherwise it has no real purpose?...time after time we hear diabetes is not a 'one size fits all' condition..as said it's not fault based...no one is blame...we have to take overall responsibility for changing the system if we are not satisfied with it...it may appear that some just accept their lot...do nothing...what's the point...yet...many choose to challenge the system/inequity quietly...behind the scenes...chip away at the obstructions slowly...carefully...with considered thought...some are more direct...others 'armchair warriors'...members may not know how to get what they need...not have the ability...that's where the forum comes into it's own...we each give what we can...whether such advice is adopted...implemented...that's up to us...the value of it being here...being a member... for me far outweighs my dissatisfaction with some of the DUK position/stance on areas in diabetes care (the lack of care primarily) I feel passionate about.

I do not recall saying that D is fault based, nor do I see why I ever would.

As for not being the only condition that does not get the recognition it deserves, well, that's up to other forums.

I don't know any better than anyone else in here which is good advice or bad advice, what I do know is that being given conflicting advice within one hour by two practitioners is completely unacceptable. This forum provides a platform for that to be put forward and views looked at.

You seem to be assuming that I'm being critical of DUK, not so, however DUK is the answer I am being repeatedly given when raising my concerns in various places, so, here I am raising them.

Straight question, July 7th, as mentioned above, within one hour I get direct opposite instruction ( not advice) regarding self testing,, where do you suggest I take that ? I could ofcourse choose to ignore it, say nothing, be a lot easier, thing is, what about the next D faced with the same scenario ?

As you know, I contacted a professor regarding this area, reply being contact DUK,, it's quite a popular answer.

Puzzles me that when one is first diagnosed you get a person reading from a sheet of paper who then woks from it, and nothing is allowed to deviate from that, which is ok if you fit within that list.

Again, what if you do not ? This may be a bit selfish but I can only use myself as a case in point. I am physically fit, always have been, I eat healthily anyway, always have, I exercise every day, always have, my BMI is spot on.

All I hear about with the DN is,,, exercise, eat well,,, blah blah. Novel suggestion here, throw the sheet of paper in the bin, evaluate the patient, taper the advice/treatment accordingly. As is done in other areas of medical treatment.

Strange how my consultant for my pancreatic problems has no problem with me, listens, explains, gives me awful news at times which, because I understand the logic I just go away and get along with.

Why is D different ??

Everything Ive learned in this forum should have been given to me elsewhere,
In a surgery, or,at least the general tone should have been encouraging.

I really do not see why that is not so. Choosing to ignore it would, to me, be equal to looking after myself and not being bothered about others.

I would never want to advise anyone to do something which could possibly have a detrimental effect on them, it's a heavy responsibility.

 

[Bubbsie]

Bill

I do not recall saying that D is fault based, nor do I see why I ever would.

As for not being the only condition that does not get the recognition it deserves, well, that's up to other forums.

I don't know any better than anyone else in here which is good advice or bad advice, what I do know is that being given conflicting advice within one hour by two practitioners is completely unacceptable. This forum provides a platform for that to be put forward and views looked at.

You seem to be assuming that I'm being critical of DUK, not so, however DUK is the answer I am being repeatedly given when raising my concerns in various places, so, here I am raising them.

Straight question, July 7th, as mentioned above, within one hour I get direct opposite instruction ( not advice) regarding self testing,, where do you suggest I take that ? I could ofcourse choose to ignore it, say nothing, be a lot easier, thing is, what about the next D faced with the same scenario ?

As you know, I contacted a professor regarding this area, reply being contact DUK,, it's quite a popular answer.

Puzzles me that when one is first diagnosed you get a person reading from a sheet of paper who then woks from it, and nothing is allowed to deviate from that, which is ok if you fit within that list.

Again, what if you do not ? This may be a bit selfish but I can only use myself as a case in point. I am physically fit, always have been, I eat healthily anyway, always have, I exercise every day, always have, my BMI is spot on.

All I hear about with the DN is,,, exercise, eat well,,, blah blah. Novel suggestion here, throw the sheet of paper in the bin, evaluate the patient, taper the advice/treatment accordingly. As is done in other areas of medical treatment.

Strange how my consultant for my pancreatic problems has no problem with me, listens, explains, gives me awful news at times which, because I understand the logic I just go away and get along with.

Why is D different ??

Everything Ive learned in this forum should have been given to me elsewhere,
In a surgery, or,at least the general tone should have been encouraging.

I really do not see why that is not so. Choosing to ignore it would, to me, be equal to looking after myself and not being bothered about others.

I would never want to advise anyone to do something which could possibly have a detrimental effect on them, it's a heavy responsibility.

Bill I suggest you read my post again...I have no idea how you've interpreted my comments as you have..it is .the overall malaise with some of our health care system that concerns me...in all areas...as for fault based...there is a large consensus of opinion relating to the cause of type 2 diabetes...we've all seen it...the press...the media in general...our own fault...we bring it on ourselves...too fat...to lazy...to greedy...perhaps I should have qualified my response with 'Diabetes is often perceived to be fault based in type 2 diabetics'...there is nothing in my post that says you have said 'it was/is fault based'...I have not assumed you are being critical of DUK...however...you have the right to be critical if you need to ...we all have that right...if we didn't there would be no point in DUK asking for our opinions...suggestions...criticism can be constructive...useful...necessary...that is what brings about effective change...I enjoy it...we have common ground...however...that doesn't mean we will agree on all matters...again...I would encourage you to reread my post ...it is not personal...it's my view...how I see things...not directed or limited to you personally...but to all 13000 + members of this forum...some may agree...some may not...again...the whole purpose of this forum.

 

[Bill Stewardson]

Bill

Bill I suggest you read my post again...I have no idea how you've interpreted my comments as you have..it is .the overall malaise with some of our health care system that concerns me...in all areas...as for fault based...there is a large consensus of opinion relating to the cause of type 2 diabetes...we've all seen it...the press...the media in general...our own fault...we bring it on ourselves...too fat...to lazy...to greedy...perhaps I should have qualified my response with 'Diabetes is often perceived to be fault based in type 2 diabetics'...there is nothing in my post that says you have said 'it was/is fault based'...I have not assumed you are being critical of DUK...however...you have the right to be critical if you need to ...we all have that right...if we didn't there would be no point in DUK asking for our opinions...suggestions...criticism can be constructive...useful...necessary...that is what brings about effective change...I enjoy it...we have common ground...however...that doesn't mean we will agree on all matters...again...I would encourage you to reread my post ...it is not personal...it's my view...how I see things...not directed or limited to you personally...but to all 13000 + members of this forum...some may agree...some may not...again...the whole purpose of this forum.

No no, not taking anything personally at all.
Not everyone can write letters or work away with senior medical people to try and clarify things. I am struggling with it myself at the minute.

As far as my efforts are concerned, fault based or not really isn't the issue, more about what takes place from the moment a person is diagnosed, I really do think it would be terrible if a patients treatment was based upon whether or not they caused any illness themselves and doubt if that is part of this template I keep getting mentioned to me. Lets leave that sort of outlook to readers of our tabloid papers.

From what I can gather DUK is being used as an opt out clause by far too many people in high places, which is not at all fair.

Coincidentally Ive just had a message from the Prof previously mentioned who is "unaware of the existence of any template" and states that dieticians have no/and would never work to a template,,, interesting ?

I am starting to wonder if communication within the NHS is partly behind all this, mainly because nobody is willing to acknowledge to me where this template originated from,,,, which causes me to wonder if they all have the same one ? Is it regional possibly ?,,, I have no idea.

Let me try and colour in my own perspective a little, one of the first things I read upon diagnosis was about the risk of ending up a blind amputee on dialysis,,,, then,,,, I get all the conflicting advice Ive had from uniformed medical people,, i.e. don't eat carbs, eat some carbs,, eat normally but less,,,
Do test,,don't test,,,then I read about type 4 being dementia,,,then I'm given Gliclazide , which I said I was not keen on, used it and my bloods plunged to 2.1 at which point a GP said don't use them,,,, I asked for a meter and was told I didn't need one, I bought my own,so, scope for a pause and some questions being asked , seems reasonable to me.

First thing that struck me on my first DN visit was how bland and generalised the whole thing was, I may as well not have attended, the template was clearly not suitable for me. I just don't qualify for its contents. That first visit was on May 16th, I went yesterday, got up and left after about three minutes when it started again.

This not the fault of the DN, they have their instructions and work to them, one actually said to me "I have my template to work to" which they indeed do,
So, where is this template coming from, who formulated it ?? more importantly, how much patient input was there ?

Take that template to its logical conclusion, there is no need to see the patient, its all there preconceived, just send the patient the Meds, sit back and assume they fit the picture and forget about it all.

Maybe I'm utterly wrong and awkward.

 

[Vicsetter]

The problem with the stock advice given out by NHS practitioners is twofold,
1. The NHS sees the expense of test strips as an easy target for reduction and
2. As far as I know all studies on controlling Type 2 diabetes using test strips conclude that it didn't produce a positive effect on HBA1c levels (If there is a scientific study that proved testing was beneficial then I would love to know). This is used to justify the withdrawal of strips.

P.S. Bill, I have seen numerous posting by you, is it possible that you coul change your signature or profile to indicate your diabetes Type/medication?

 

[Bill Stewardson]

The problem with the stock advice given out by NHS practitioners is twofold,
1. The NHS sees the expense of test strips as an easy target for reduction and
2. As far as I know all studies on controlling Type 2 diabetes using test strips conclude that it didn't produce a positive effect on HBA1c levels (If there is a scientific study that proved testing was beneficial then I would love to know). This is used to justify the withdrawal of strips.

P.S. Bill, I have seen numerous posting by you, is it possible that you coul change your signature or profile to indicate your diabetes Type/medication?

Yes it is possible.

Why would/should I do that please ??

 

[Bubbsie]

Bill I've taken this matter as far as I can... a couple of final points occur to me...most here would be able to write a letter...it's really isn't that difficult...if it is a real difficulty for some...I am sure myself & possibly others would be happy to assist...I have supplied copies of letters I've written to my local CCG...my GP & other agencies for several members to adapt to their individual circumstances...there is no absolute need to work with senior people...these matters can be addressed with all health care professionala...at any tier in our health services..

 

[Bill Stewardson]

Bill I've taken this matter as far as I can... a couple of final points occur to me...most here would be able to write a letter...it's really isn't that difficult...if it is a real difficulty for some...I am sure myself & possibly others would be happy to assist...I have supplied copies of letters I've written to my local CCG...my GP & other agencies for several members to adapt to their individual circumstances...there is no absolute need to work with senior people...these matters can be addressed with all health care professionala...at any tier in our health services..

Oh well,,,

Never though of any of that, maybe I will try it.

Stuff cascades down from senior people,

Anyway, we will see how it pans out in the end.

Most can write letters, should they have to regarding this issue ?

 

[Copepod]

Yes it is possible.

Why would/should I do that please ??

It is a good idea to indicate which type in profile, as it helps others to interpret what is being written, especially if from a personal point of view. Personally, I choose not to state which insulins I use, unless I am commenting about my personal experience of specific insulins, plus it makes section below posts much bulkier. However, many members give lots of details of medications for diabetes and other conditions, HbA1c records etc.

 

[Bill Stewardson]

It is a good idea to indicate which type in profile, as it helps others to interpret what is being written, especially if from a personal point of view. Personally, I choose not to state which insulins I use, unless I am commenting about my personal experience of specific insulins, plus it makes section below posts much bulkier. However, many members give lots of details of medications for diabetes and other conditions, HbA1c records etc.

Done.

 

[Diabetes UK]

Hi Bill, it sounds very frustrating to have been given so much conflicting advice from so many sources and I can understand that being frequently signposted to a charity is exasperating.


Going back to your original post, you spoke to an NHS 111 call fielder which was followed by a callback from a GP. Unfortunately, it's unlikely the NHS 111 field caller would have been medically trained and although the Dr who called would be, neither of these people know you, your diabetes or your medical history. Diabetes (as you know) is so varied from person to person, there is no 'one-size-fits-all' answer and so any general info/guidance that HCP or call fielders may have would not necessarily be right for you as an individual. There are some bits of information that are helpful in a more general sense, for example gliclaside holds a risk of hypoglycemia and so we would take the position that you should always be testing if you are taking this particular medication.

In terms of understanding what advice to take, any advice about testing or medication should really be from your own diabetes team who have access to your records and can give a well-informed opinion of the right management option for you. Unfortunately, it sound like you are not getting the patient-focused care that you need with your own DSN, which can be very frustrating, especially when this extends to other HCPs. Diabetes requires a very individual approach from and considerations need to be taken of your results, your medication etc to ensure that you are getting the right balance with your medication that suits you.

In terms of being signposted to Diabetes UK, it depends why they are suggesting you contact us. Although our Helpline are not medically trained and are not here to give individual medical advice, what they can give is the space and time to go through the advice you have been given, help you evaluate what might be the best option for you and importantly, what questions you can be asking your DSN to get the best answers and results. The team have a knowledge of the different medications and how they work, so although they cannot tell you what to do, what to take, they can help you to understand different options, what the implications may be and to get the support you need.

Essentially, it is your diabetes team who should be giving you the specific medical advice & information that you need, but you are limited in your time with your healthcare team and it helps to supplement this with other options such as the Helpline or the sharing of advice and information on here. Diabetes can very much be a case of self-management and I think the peer support on here can play a great part in helping with that.

 

[Vicsetter]

Thanks Bill, thats much better as I wouldn't have to think about you taking insulin or other hypo drugs.

 

[Bill Stewardson]

Thanks Bill, thats much better as I wouldn't have to think about you taking insulin or other hypo drugs.

Cheers Vic,,

I didn't realise the importance of posting my Meds.

 

[Ditto]

Puzzles me that when one is first diagnosed you get a person reading from a sheet of paper who then woks from it, and nothing is allowed to deviate from that, which is ok if you fit within that list.

Never look a gift horse in the mouth. I've been told bugger all. Zilch. Did ask about an Xpert course and was granted a place but only because my diabetic sister refused to go on her own so I was going with her, but then the lecturer didn't turn up and it was horrendously badly organised. My care has been non-existent and dire.