i just wondered why my post has disappeared

[Albert]

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.

Benedict
Surely it's the job of the Moderators and the Admin to sort these sort of requests out? pipstick apparently was only asking for some help which I have seen here before? It also seems a bit silly that this person apparently wasn't contacted about the removal. Surely it should be common courtesy to advise anybody who joins, for whatever reason why a post has been removed or edited?

I totally agree with iHs that these things should be allowed. They may benefit all of us indirectly!

 

[benedict]

Hi Albert

When a post is removed for reasons such as this, I get back to them as to why. New members cannot send PMs so this contact needs to be made by email.

If you have more questions, please contact me via PM and I'll be happy to answer.

Benedict

 

[Albert]

Hi Albert

When a post is removed for reasons such as this, I get back to them as to why. New members cannot send PMs so this contact needs to be made by email.

If you have more questions, please contact me via PM and I'll be happy to answer.

Benedict

Thank you for your prompt reply Benedict. Much appreciated. However, I wasn't asking a question, I was making a comment. It seems odd that if you get in touch with people by e-mail that pipstick had no idea what was happening, hence this thread. Perhaps the e-mail you sent went adrift? These things happen as they say.

This shows the shortcomings of new members not being able to pm, I also thought that Admin and Mods were always able to pm new members anyway. Has that changed?

That's a question BTW :wink:

 

[benedict]

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?

Hi iHs

With the market research asks, the other advantage with people getting in contact with us before posting is that we can check them out. When completing surveys, sometimes it involves giving away personal information and we want to know that the surveys are being used for the right purpose.

Benedict

 

[pipstick]

Hi everyone,
firstly, i would like to say thank you so much for all of your replies, it really lifted me to see some really positive and helpful comments after the shaky start i had. I know some of you are still confused as to why i wanted some quotes in the first place; let me give you the synopsis of the talk that i'm doing. I am a dietitian that is very interested in giving patients back ownership of their diabetes, and I get really annoyed with the daft comments that medics or practice nurses use as 'scare' tatics to try and shock the patient into doing what they want them to do. I'm a huge believer in allowing patients to make their own minds up about what their priorities are and not being made to feel a failure or 'non-compliant' when they can't match up to HCP's expectations. My idea was, to try and get some anecdotes to use in the beginning of the talk to show that "fear itself does not lead to behaviour change",
(eg. when my dad was told to get his act together or i shall have to prescribe you metformin - he'd just been to NZ for 4 weeks and enjoyed every minute, and, probably bad timing, but was due to go and see my bro in italy a few weeks after this - , he felt awful and promtly went out, bought two pork pies and ate them both on the short drive home!)
and that HCPs need to wise up and brush up on their communication skills if they are ever going to get any kind of rapport with their patients. To the follow up on this i am going to try and give them an idea how to actively listen to their patients and help them to self manage their diabetes, (not try and manage it for them!) by using certain communication skills that a fair few are lacking in.
I can let you know how the talk goes if you like? it's happening a week next tuesday, so i'm getting nervous now!
thank you all again
pipstick

 

[IanD]

+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:

How devasting, poor girl. It was bad enough for me when I received the same prognosis as a 60 y o grandfather. (11 years ago.) 11 years on I am fit & well & active.

The sad truth is that that consultant's opinion is based on observation of patients following the standard NHS/DUK diet advice which DOES result in those complications. A recent Swedish study, reported after 44 months said:

Considering the solid evidence for the negative effect of hyperglycemia on diabetes complications as well as cardiovascular disease the present high-carbohydrate dietary advice resulting in unnecessary hyperglycemia and insulin resistance seems difficult to support [17-19] and for diabetes patients, current dietary recommendations seem to be a major part of their problem rather than being part of the solution. Carbohydrate restriction, however, reverses or neutralises all aspects of the metabolic syndrome

 

[pipstick]

Hi everyone,
I just wanted to write something after the things I've read on another post that I thought I'd replied to in an honest non-judgemental way.
It appears that one does not have the right to an opinion unless you have diabetes. I now realise that if I did have diabetes and hadn't listed myself as a health care professional on my profile, then my comments would have been taken completely differently. It seems like if you don't have diabetes or are a health care professional, then you are viewed suspiciously and anything you say will be taken out of all context and a minority of people on this forum feel the need to turn you into some sort of Frankenstein's monster. I have learned some valuable lessons during my short time on this forum.
1, words in a text document can and will be taken out of any possible context by people who are, suspicious and bitter towards health care professionals due to any number of reasons.(blame me for being young and naive and trying to seeing the good in all situations).
2, the words of a minor few can cause more hurt and distress than they probably originally intended, especially when the person it is directed towards feels they have only been trying to help and their intentions were completely innocent

I understand that people may disagree with what I've said or the opinions I've had, as I do appreciate that everyone is different and there is no such thing as 'blanket advice', but to be vitriolic to the point of maliciousness is completely uncalled for.

I did intend this to be my last post because I've had enough of the bitterness and childish comments that I've come across on here directed towards me for what I feel is very little reason.
However, if I did that then I would be letting the people down who actually believed in me and realised that my intentions were good.
So while I won't be posting on here again formally, I will give you an update on how my talk went in a couple of weeks, for the benefit of those who seemed to have mostly positive comments and wanted to help.
I know I am not the person you have made me out to be and I hope to have a long and hopefully hugely fulfilling career in front of me. We all have a huge amount to learn from each other and I know that the comments from people on here are from a minority of people, so I don't intend for the experience that I've had on here colour the time I have with patients.
I just hope that those that formed a 'flash mob' in order to show everyone just how much they hate health professionals, find something to write that's positive and that one day they find an HCP that they actually respect. Please don't base your opinion of the whole NHS or health care system on one person, just as I don't base my opinion of the diabetes population as a whole on the comments of a few very negative and hostile people on this forum.

I want to thank those people who have supported me and not used my other post as a way to 'prove' that I'm only out for one thing and that I've apparently "shown my true colours" by proving that I "tow the party line".

 

[borofergie]

I'm sorry that you feel the need to leave, I think you'd learn a lot about diabetics if you stayed and talked with us for a while.

What you describe as a "flash mob" of "negative and hostile" people were actually very reasonable cross section of the regular posters here. The fact that every single one of them criticised your advice, should tell you something about the quality of it.

Good luck with your talk, I hope you think twice before you tell a T2 Diabetic not to test again.

 

[Grazer]

I agree with borofergie. If you read the history of the other posts those people have made, you'll see that they're not hostile or negative. They have all dispensed warm and helpful information on a regular basis. You unfortunately followed a line that is a source of I'll feeling amongst almost all, (not a few) of the people here when you talk about testing. Perhaps the lesson is to get to know your audience and their level of expertise before making too many grand statements. The rancour was not because you're an HCP, or because you're not diabetic, it's because you set yourself up as a professional and dispensed poor advice to a new member. As I said earlier, I'm sure your heart is in the right place, but your approach isn't at the moment. I'm sure you'll learn and your career will flourish.

 

[ladybird64]

Gawd, I have got scribbleitis tonight..just did a long post on the "other thread"!

A quick and friendly comment Pipstick. We have no choice but to base our opinions of the NHS system upon those that we see..while some may have numerous HCP's involved I think that is in the minority.
You will see many, many different people in your job, some you may gel with, others not so much.

We don't have a choice, unless we fancy a round of changing one doc after another (not practical) we are stuck with what we have got and hence base our opinion on how helpful/unhelpful we find them.

I'll shut up now

 

[Unbeliever]

I don't think anyone here wants you to shut up ladybird. You have made some sterling contributions ..

Re changing doctors - it is certainly not practical but often compounds the problems.
Circumstances beyond my control have forced me to change doctors a few timesin the last few years.

I find it takes a very long time to becone accustomed to a new practice and new people .There apppears to be an expectaion that new paients will somehow understand the system in a new practice without any information. There is no way of checking how diabetics ae reated in a particular pracice before "signing on".
Of course , if you are fortunate you will encounter a sympathetic person you are able to communicate with but his may not be acceptable to "the system"

I have met good and less good HCPs -and others who mean well but are bound by the system and can't help patients as much as they might wish.

It is obviously the system which is at fault. I think the pressures put on people to attain targets etc and unrealistic expectations of the training offered bythe NHS to nurses is responsible .

Above all it is the "protocols". The onesize fits all "mindset which causes so many problems.
Many Gps are aware of this and are waiting for it all to change -confident that it will because the results are not good.
In the meantime they like to wash their hands of the whole sorry mess and keep their heads down until it is all sorted out.

It is unfortunate that some HCPs let a little authority go to their heads. the same type also tends to believe everyhting they are told by those who train them and expect patients to do the same.

I have known GPs to be horrified by by the content of some of these courses. They know it is wrong but are powerless to prevent its implementation.

Unless and until some of he more enlighened find a way tto make their feelings known nothing will change - except for the worse..

 

[catherinecherub]

Hi pipstick,

I am sorry you feel the need to leave and find us hostile. I do not think that was anyone's intention. You walked in to the "Lions Den" so to speak and it is a pity that more of your colleagues are not aware of the level of anger within the diabetes community about patchy care.. This forum is not alone in it's views, diabetes forums throughout the United Kingdom feel the same.

The internet is a powerful tool and this forum has proved invaluable for all diabetics. There is disparity within the NHS and a postcode lottery is very evident here. If you have the time to read the posts on the Newly Diagnosed you will see that things are not as they should be, we should all receive the same level of care.

One particular frightened, newly diagnosed always sticks in my mind. She had a weight problem and was really scared of her diagnosis. A bully of a Practice Nurse, herself overweight was supposed to offer her dietary advice. All that she said, whilst giggling with a colleague, was "Leave the doughnuts alone" She then shoved some NHS leaflets at her and told her to go on her merry way. Does that explain to you what I mean by postcode lottery?

Nobody here has suggested that all HCP's are tarred with the same brush. There are some excellent ones that have been spoken about here. If you take the time to read how people have enabled themselves to manage their diabetes with the help of test strips provided by their G.P. or self funded, then surely that would strengthen the argument for them being necessary? All we are asking for if some structured education that is beneficial to the patient, that encompasses proper dietary advice and the use of test strips. We do not expect unlimited test strips and we do not expect a vast amount to be provided once we have come to grips with this chronic disease.

I don't think that your time here has not been wasted as you have now seen how the Type2 diabetic feels about the present state of affairs and it may be that you can be the start of making a big difference about our care. We are passionate in our quest for a fair deal for all diabetics and I expect that this has shocked you but we are not out to single you out or cause you distress but to help you understand that things are not as they should be for Type2 diabetics throughout the NHS.

I hope your talk goes well and that you can come back here and give us a synopsis of it.

 

[Helenababe]

Hi everyone,
firstly, i would like to say thank you so much for all of your replies, it really lifted me to see some really positive and helpful comments after the shaky start i had. I know some of you are still confused as to why i wanted some quotes in the first place; let me give you the synopsis of the talk that i'm doing. I am a dietitian that is very interested in giving patients back ownership of their diabetes, and I get really annoyed with the daft comments that medics or practice nurses use as 'scare' tatics to try and shock the patient into doing what they want them to do. I'm a huge believer in allowing patients to make their own minds up about what their priorities are and not being made to feel a failure or 'non-compliant' when they can't match up to HCP's expectations. My idea was, to try and get some anecdotes to use in the beginning of the talk to show that "fear itself does not lead to behaviour change",
(eg. when my dad was told to get his act together or i shall have to prescribe you metformin - he'd just been to NZ for 4 weeks and enjoyed every minute, and, probably bad timing, but was due to go and see my bro in italy a few weeks after this - , he felt awful and promtly went out, bought two pork pies and ate them both on the short drive home!)
and that HCPs need to wise up and brush up on their communication skills if they are ever going to get any kind of rapport with their patients. To the follow up on this i am going to try and give them an idea how to actively listen to their patients and help them to self manage their diabetes, (not try and manage it for them!) by using certain communication skills that a fair few are lacking in.
I can let you know how the talk goes if you like? it's happening a week next tuesday, so i'm getting nervous now!
thank you all again
pipstick

Hi pipstick.

I can see both sides of everyones comments. If you had explained your reasons in the first place, like you have in your above post, people would have understood, and opened up to you more, and want to help you with your request?

I've been on sites where people have been found out to be using posters as guineapigs basically, and when you have something as serious as diabetes, or any illness, and you're on a mutual support forum, you can feel vulnerable and become wary of someone 'questioning' you.

Now you have explained, good luck with your quest, and I hope it helps your patients.

Helena.

 

[IanD]

I can let you know how the talk goes if you like? it's happening a week next tuesday, so i'm getting nervous now!
thank you all again
pipstick

We should get the report soon. Next Tuesday was Oct. 18th.

I PM'ed Pipstick as follows on Oct 8th.

Dear Pip,

I'm always glad to "meet" a diabetes health professional who is interested in the views of actual diabetics!

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'.

That quote from W-J reflects my experience at diagnosis (the year Steve Redgrave was winning gold medals.) My Dr told me - "as a diabetic you are in line for heart disease, stroke, blindness, amputation, kidney failure .... & while you are here I will compute the probability of a heart attack. 25%. Diabetes is a progressive disease, so that however carefully you follow our advice, complications will come, so don't think you have failed."

I left the surgery in a state of shock that lasted months. My tennis friend experienced similar feeling when she was diagnosed with liver cancer. You've got the disease that will kill you.

11 years after diagnosis I am fit & well, with no perceived complications. That is because when the complications did arrive, 3½ years ago, I joined this forum & followed the advice to cut the carbs. 3 months after cutting out all the obvious carbs I was out of pain & playing tennis again.

I'll quote from emails with the local dietitian, who gave me the high carb advice after diagnosis, & whose advice I had carefully followed.

Dear R---
The chairman of our Diabetes Support Group recommends I contact you regarding diet. We have met several times, & I followed the recommended low GI diet for the first 8-9 years of diabetes.. When I checked, my carb consumption was over 300 g of "good" carb daily. Its now below 100 g.

I have recently been thoroughly checked under the Imperial College "SABRE" [heart & diabetes] project & all is well. I am much better under the low carb diet, whereas I was becoming disabled with intense leg pains.

The dietary advice which has restored my active life was obtained from contributors to the http://www.diabetes.co.uk forum which is run by patients rather than medics. The experience of other patients is very helpful.

I should be grateful for your comments on a reduced carbohydrate diet. Its over a year since the first email, & I would not consider reverting to the GI diet.

HBA 6.2, BMI 24, Chol 4.8.


Apologies for not replying earlier to your e-mail. Firstly congratulations on your excellent blood results and BMI (HBa1c and Cholesterol). It is safe to continue following a lower carbohydrate diet provided the balance of the energy is from fruit & vegetables, monounsaturated fats (e,g. nuts, seeds, lean meat, olive/rapeseed oil), low fat dairy foods as opposed to saturated fats.
Also if a patient is following this diet they should monitor their blood glucose levels and adjust medication/insulin to reduce risk of hypos. on a lower carbohydrate intake. Regular blood tests to monitor lipid levels are also advised.

The ADA recommend that a minimum of 130g carbohydrate/day but if you go lower than this keep above precautions in mind.

I hope this answers your queries.

We run an Xpert group education course for Type 2 patients and Hidap for Type 1 patients. You are welcome to attend these sessions and I am sure other patients would benefit from hearing about how you are self manging your diabetes so well.

I took up her invitation to go on the XPERT course. You will find my log of that course here.

Hope that helps your search, & patients will benefit from your visit to the forum. I'm happy to answer further questions.

Regards,

Ian