told to stay of Internet sites for copd

[davecarol2]

I find this group .page very helpful . But I’m upset with my health professionals ie my consultant at hostpital and my restpitory nurse . after telling them both that I am on the blf website they both upset and told me in no uncertain words I should stay off the internet looking at answers as it’s not helpful !

[skischool]

Dave,just ignore them,it is common knowledge that health care professionals hate patients who have managed to gain an insight into their own conditions,the knowledge we have gained somehow seems to threaten their position of power and authority when in reality if they worked with us as a team their endeavours to keep us alive and healthy would be so much easier.

Stay with the winning team on here but on occasions elicit the help of those in white coats as somebody has to give them something to do to help them feel loved and respected and of course we are open 24/7

Best wishes Ski's and Scruff's x

[2greys]

They don't have COPD themselves, just because they are professionals does not enable them to know what it is like, nor understand the need for support. They don't understand the need for all those little tips that make life easier and more tolerable. They don' t understand the feeling of isolation, the loneliness. They don't understand the frustration it creates. They don't understand the depression and anxiety it can give. So how can they turn around and tell you that. This forum exists because the professionals do not and cannot help with these matters as and when it is needed.

[soulboy118]

Typical , some health care professionals hate their patients to have knowledge, being uninformed makes that patient easier to control and is more manageable and an easier caseload.

They should be encouraging you to educate yourself about your condition , if I was you I would have asked why they dont want you to gain knowledge from the biggest lung charity in GB ? What are they scared of ? It would make me wonder if they had my nine or their best interests at heart .

Learn all you can from this site and the wonderfully kind knowledgeable people you will find on this site .

[davecarol2]

is exactly how I feel guys !thank you all . sometimes all I want from them apart from giving professional update on progress of condition and any meds that can help is just sometimes a little bit of compassion !!!!!

[hypercat54]

I agree with the others but wonder if what they actually meant is don't Google indiscriminately? We get new members here all the time panicking coz they have read they only have 5 years which is ridiculous!

Sticking to reputable sites like this is fine

[sassy59]

Ignore them all Dave, this is a very supportive site and glad you’re a part of it. Xxxx😘

[cofdrop-UK]

Not helpful to who I wonder! The inforamtion and support I have gained, amongst many others, is invaluable. I do take hypercat’s comments on board though to only stick to reputable sites.

Cx

[Hidden]

I would say they are right in what they said, in fact we tell people ourselves who visit that we are not qualified to answer medical questions and advise them to see their doctor. We also tell them not to go Googling around on the internet looking for answers. I doubt very much whether these self important people even know what we get up to here.

[skischool in reply to Hidden]

Googling done sensibly is wonderful,we have never had so much access to knowledge at the push of a button,alas it has also spelt doom and gloom to that tired old salesman on your doorstep with a double hernia carrying those Encyclopedia Britannica's. x

[Hidden in reply to skischool]

That is so true, we tend to forget how hard it was to gain access to information, those Britannicas cost a fortune. I could never afford them. I thought it wonderful when the first CDs came out with a limited copy, in fact I still have it loaded on my desktop, I’m too nostalgic to uninstall it. 🙄x

[Whitechinchilla in reply to Hidden]

Possibly just as well Don????🤣🤣🤣

[davecarol2]

my thoughts on my post is .. why can’t the health professionals work together with the blf ? it can only be benificial to all !! and most importantly we are the patients . so I’m very grateful to blf as they are charity funded .and dear consultant and lovely respiratory nurse I’ve paid my ni contributions all my life so please remember you all are my employees ! I am entitled to ask and find out about my disease as much as I like . a little compassion goes a long way .

[Whitechinchilla in reply to davecarol2]

Well said. x

[Patsy164]

I was told by my doctor to only look on patient.co.uk or the NHS webpage not on any other webpage. But I agree with everyone this site is a very informative and a helpful one. Experience is the key here, advice, sympathy, encouragement and fun is what this site is all about. If you are feeling worried, depressed or just want to read other experiences of your particular complaint surely helps us. When I am ill I probably don't participate but just reading what is on here and the jokes cheer me up.

Dave anybody would think this is a destructive website according to your consultant and nurse. I mentioned it to my consultant and he didn't know about it but didn't poo poo it, he had obviously heard of the British Lung Foundation but not the healthunlocked.

[Whitechinchilla]

Hiya

This is not so much a medical forum as an extended family.😉😉😉

I for one would not be without it.

We are all grown up enough to decide what we chose to believe or not from what we read.

(Sadly some medical staff would prefer is to be ignorant as it makes them feel better about themselves?)

Unless they have threatened to lock you up I reckon you can do what you jolly well like.😂😂😂

Keep reading and keep posting.

Good wishes davecarol12

[Whitechinchilla]

P.S

They could alternatively congratulate you for taking responsibility for your health??

Just a thought

😊

[Jaybird19]

I have learnt so much on this site about other people and how strong they can be , and about me, myself, and most i important it cheers me up .

[Dietrech]

They don’t like it when patients have knowledge it takes away what they consider their omnipotent power! I nursed for 30+ years and know far more than many GPs, and other medics! They don’t know it all, and they don’t want us to either, so just ignore them and be the intelligent person you are, not the ignorant patient they would like you to be!

[Bingo88]

The way the nhs is struggling, And you can t get a gp appointment. Its a good job we have this group and google. Otherwise i would not have found out i had a blood clot in my shoulder following pacemaker operation. Ignore them

[Bingo88]

Too right pal. Plus you cant beat having someones advice that has been through exactly what someone else has been through

[Maximonkey]

Hi Dave, when they say internet sites they probably mean Search sites. My respiratory nurse actually told me on diagnosis of Bronch to log into HealthUnlocked for advice. It was one of the best pieces of advice I was given. I did search Bronch and yes, it was scary. Stay away from them and take care, Maximonkey

[Jollj]

I have never known anyone on here tell you what or what not to do,nobody is an expert or even qualified,but what people will do is share their experiences, tips,help they have been given etc etc,my practice nurse is very good but I also think this site is almost as good and some are very know and caring, it goes a long way !!

Bobby j

[Perrythomas]

Keep looking on the Internet!

[wheezyof]

As long as you are looking at BLF or National Health sites then keep looking.

There is a lot of rubbish out there too - lots of sites say we will all die within 5 years of diagnosis.

[Maximonkey in reply to wheezyof]

Hi Wheezy, you are so right. I have been suffering from Bronch now for 7 years and yes I am not dead yet, in fact I feel fitter than I was 8 years ago. Take care Maximonkey

[Steve54]

That strikes me as odd. My Consultants and Community Respiratory Nurses and GPs have always recommended me to use the internet, and particularly the NICE and BLF sites.

[Nicholatracy]

This is a great site. No gloom and doom, lots of help and support 🐞

[Kristicats]

You can get a lot of information from the net. Some good , some ridiculous . Just have to be a realist and research any doubts a little further. Best advise and ‘ reality’ on here. Horses mouth as is said.