i just wondered why my post has disappeared

[Snodger]

pipstick,

I do not intend any aggression in the following but would like to try and explain a bit.
I totally understand where Grazer's coming from - we have had some people on here who have asked for stuff from us without much context and even at times with very little understanding of diabetes at all. It can feel quite uncomfortable providing information to a stranger - YOU know you mean well, but we don't know you. And we don't know how you'll use our words and how you'll represent us. The forum is here for people with diabetes to support each other rather than for people without diabetes to quiz us. I don't say this to 'put you down' - it's just the truth.
If you've done research of any kind in the NHS you'll know that there are enormous ethical considerations that come into play when quoting patients. This is one of the reasons for those ethical considerations; people need to have informed consent when answering questions.

HAVING SAID ALL THAT - I have been doing research and am doing research on these very topics (with NHS Ethics approval) and may be able to help you, within those ethical guidelines. I'd be very interested in discussing it. I think you may have enough posts now for a PM, in which case please PM me if you are interested in a discussion.

 

[viviennem]

Wsmum, I was 61 when the GP with responsibility for diabetes said exactly the same thing to me, and I wasn't impressed either! No-one needs scaring about this disease, and to say such things in front of a child is despicable.

Pipstick, I have no problems with your request, and if you can spread some of our feelings around the medical profession so much the better. Here goes:

I am a highly intelligent, well-educated professional woman, and I don't like being patronised by anyone.

I want to take control of my disease, and need help, the right tools and correct information.

Don't tell me that testing my blood regularly will confuse me - it doesn't!

Don't tell me what to eat when I know perfectly well that if I want to put my BGs into double figures (and gain weight) I should eat what the NHS recommends.

As for things that have been said to me - this by the diabetic specialist GP:

Me: I eat a low-carb diet.

GP: Fine, as long as you eat low-fat as well.

I didn't reply; I wanted to ask her what she thought I should eat, if I wasn't eating carbohydrate or fat? Protein only??

I don't see this GP very often - I go to another.

A lot of the frustration among diabetics of all types, particularly those who have been managing their condition for years, is being told stuff by HCPs who don't have diabetes and can't possibly have the understanding of what it's like to live with the condition. That leads us to think - if s/he can tell me that and I know it's wrong, what's going to happen to someone who is newly-diagnosed?

There are some (very many!) excellent HCPs of all sorts out there, who work with us, try to keep us informed and do their best for us. I'm blessed with a GP and a practice nurse who come under this category. But occasionally we meet one who seems to be trying to kill us!

I know that there are some very bad patients out there who ignore their condition and appear to be trying to eat themselves into an early grave. Those people must be very frustrating for HCPs to deal with. But we're not all like that; one size doesn't fit all. Learn to know something about us as individuals before you treat us all like idiots.

I think I've summed up the feelings of quite a number of people on this forum. If I'm wrong, they'll soon tell me :wink: :lol:

Viv 8)

 

[WhitbyJet]

+1 viviennem

I never forget the day I sat in the consulting room, my 6 month baby happily gurgling away on my lap, the consultant looking at me sternly saying 'Type 2 diabetes destroys all your organs, one by one, there is no cure for it, nothing. It's worse than someone having cancer. The best you can do is eat a healthy, plenty of baked beans, jacket potatoes, cottage cheese, wholemeal bread, porridge, vegetables and fruit, but be aware, this is a progressive disease,no bones about it'.

I almost walked under a bus on the way home, couldnt see traffic for tears.
Blast, tears coming now at the memory of it :cry: :cry:

 

[borofergie]

I am a highly intelligent, well-educated professional woman, and I don't like being patronised by anyone.

Looks like someone has hacked into VIv's account... :lol:

 

[diadeb]

Hi Pipstick, firstly I am sorry that you have received some negative replies, for the life of me I cannot see why.
Also I wholeheartedly agree with Viviennem's post and all that is in it. I have never seen a GP about my diabetes, I am always directed to the DSN who is actually a Practice Nurse, who presumably has taken courses on diabetes. As a retired senior nurse I also have undertaken many diabetes courses and was told to inform my patients as per DUK. As a person now living with diabetes I now realise all that I was taught was wrong. I have told my DSN that I am on a low carb diet and expected an agument but all I got was "well you have to eat pleny of carbs" to which I replied that I never eat the foods that she had advocated because if I did it would raise my BG levels and I would surely get complications. I think she realised that she would be in for a fight and so changed the subject. My HbA1c is 5.8 and lipids are much improved since going on a low carb diet and really the only reason I go to my Diabetic Review (apart from the fact that I have to) is to get a print out of all of my blood results, which I keep and disseminate.
Any information that I have received so far has not enhanced my condition, I have improved my BG levels inspite of the information given and by doing my own research and joining forums like this, regards, Debra x

 

[Albert]

Pipstick

I. Ecfho the sentiments of diadeb. As far as I am concerned ALL are welcome here, even a non diabetic. Anything that helps others to understand how a diabetic feels when confronted by negative comments from HCP's is welcome as far as I am concerned. Education is a two way street and HCP's should realise they don't know it all! They can learn from the patients too.
As for the responses you had which intimated you weren't welcome, ignore them! They are not representative of the diabetic community. You are as welcome as any other here ,

 

[chocoholicnomore]

Looks like someone has hacked into VIv's account

Thanks Borofergie.

I don't know Viv but it's the first I've laughed since being diagnosed-nearly choked with laughter :lol: :lol: :lol:

 

[Terminator 2]

'Type 2 diabetes destroys all your organs, one by one, there is no cure for it, nothing. It's worse than someone having cancer.

That fair cheered me up

 

[borofergie]

'Type 2 diabetes destroys all your organs, one by one, there is no cure for it, nothing. It's worse than someone having cancer.

That fair cheered me up

...it's worse than cancer AND you can never eat a chocolate hobnob ever again.

 

[viviennem]

I am a highly intelligent, well-educated professional woman, and I don't like being patronised by anyone.

Looks like someone has hacked into VIv's account... :lol:

I may be all the above, but it doesn't mean I understand anyone else's sense of humour . Will someone explain the joke to me? or should I feel insulted?

If I ever come over as patronising, I certainly don't mean to!

Viv 8)

 

[Terminator 2]

'Type 2 diabetes destroys all your organs, one by one, there is no cure for it, nothing. It's worse than someone having cancer.

That fair cheered me up

...it's worse than cancer AND you can never eat a chocolate hobnob ever again.

Ah well, there's always the afterlife

 

[borofergie]

I may be all the above, but it doesn't mean I understand anyone else's sense of humour . Will someone explain the joke to me? or should I feel insulted?

If I ever come over as patronising, I certainly don't mean to!

I hope you don't feel insulted.

You never come across as patronising, and always educated and intelligent. I was just taking the mickey a little bit.

Sorry

 

[ShyGirl]

:shh:

 

[Unbeliever]

Its just black humour shygirl - a way of coping wih he horror of it all - If you din't laugh you would cry sor of thing.
I personally feel that I wouldn't know where to star so i jst have a rant as and when but wouldn' l like to choose amongst he gems I get from nurses and docors re my diabetes.

Ignore that borofergie Viv, Trouble is you are just TOO intelligent and well educaed for him.

Hope you are a "he" borofergie? Those avatars can be very misleading.

Poor Whityjet! That doctor should have been struck off! I don't hink I would ever have manged to get over a doctor saying that to me. And you wih a young baby! Now HAT@S not funny.

 

[borofergie]

Ignore that borofergie Viv, Trouble is you are just TOO intelligent and well educaed for him.

If you listen very carefully you can hear the sounds of no-one disagreeing with that.

 

[viviennem]

He just hit one of my insecurity buttons, Unbeliever! :wink: I'm sure he was only teasing - I have no quarrels with Borofergie - even if the avatars make him and Patch look just like archaeologists! :lol: :lol: :lol:

Maybe I should have added - " . . . being patronised by HCPs" to the first sentence of my original post. I think we all know about that.

Viv 8)

 

[sugar2]

I echo Snodgers comment.

Please don't feel you are unwelcome, but please could you tell us what you are going to do with all the anecdotes?

I assume that you will use them in a paper, talk etc, where you say something typical comments that some diabetic patients have suffered are........

 

[Unbeliever]

Yes I am sure we would all like o know more abou what you will do with the info pipsick!

I think it would be difficult to beat Whitbyjets story but I can tthink of one or two I have read on here hat come close.

In my own experience , my favourite is perhaps the Gp who , when i wanted o come off rosiglitazone because of fears about heart failure etc, firstly accused me of being a Daily Mail reader and then said "Bu most diabetics DO have hear problems! Then when I insisted because the rosiglitazone wasn' even working he agreed and old me that people were handing it back in droves. he was normally very helpful and understanding but had received instructions to resist patient requests for change by the PCT.

I could write a book about my experiences with nurses but one of my favourites is the DSN who refused to believe that there are slim T2s. Any T2s who are of a normal weight are just excreting the sugar i n heir urine, So there!

I do hope Borofergie knows I was joking too Viv! Please elll me that YOU don't look like his or Patch's avatars!

Another joke!

 

[benedict]

Just a quick note to say that we have had a spot of bother in the past with some people joining the forum only to 'take'. The research forum has suffered from this fate as it became overwhelmed by market research asks.

Ideally, new members should join to be a part of the forum rather than to use the forum. Healthcare professionals can join but it's reasonable to expect people to give something back if they are looking to ask questions of us. An example would be to give the forum some more information on why the talk is taking place and what the aims of the talk will be.

 

[iHs]

If it wasn't for reading a request on the forum from a market research company, I would never have been able to give my input regarding the development of a new insulin pump.

I'm only too pleased to be able to help improve everyone's quality of life by helping any company with their research.

I hope the forum will still allow the research requests?