If your healthcare professional has g... - Lung Conditions C...
If your healthcare professional has given you some printed information about your condition, did they give you:
Please select all that apply:
wish I knew more about bronchi..some days I feel like I cannot breath and I have a heavy weight on my chest..i never cough anything up though
Felt and still do that I know nothing about my illness still not sure what it is
leaflet given to me at pulmonary rehab class
Mmmm although a small sample size todate, there are interesting results of the poll so far!
I have COPD Type 2 diabetes and have no idea how these conditions will impact on my life??
sorry to hear that mags1953 i have the same thing, and im still waiting for answers from my doctors, not a nice way to be, i try to put it out of my mind sometimes. Although that is a hard thing to do
Aww..thanks MURPHYman for replying. I know my doctor doesnt like overloading me with health issues so I do understand that. Mind you when you start looking things up, don't know about you but I then get more confused so tend not to keep googling things. Waiting for my next respiratory review but on top of everything I've cracked a couple of ribs???. So with the coughing not healing as quick. Blimey sound like an hypochondriac haha. I hope you get sorted soon xx
When my mum was diagnosed with Broncietisasis and then got pseudomonas bug, I searched and searched for more information - nothing there. I strongly believe that more information needs to be put out there for people if they wish to find out more . I sadly lost my Mum just last year preceded by two years of increasing closeness between us, but if only I had known and understood more earlier I know I would have done so much more earlier with her when she was able to do more....
I went on line & contacted BLF myself. Not until 18 months later did I get offered any information!
My leaflet just says to.
sit down when washing shaving etcetera.
sit down to do vegetables and washing up and to plan extra time to go out etcetera etcetera.
I already knew all that from experience lol!
struggling for breath copd review coming up will ask for more info
At the time i had COPD stage 2, given no more info then that really
Now it's supposedly 'moderately severe' Whatever that is supposed to mean - GP said that when i don't have any chest infection its moderate, but when I Do have a chest infection, its severe.
Go figure
I have had COPD for 20+ years, I was given no info and would welcome info.
I also got some leaflet on blf from pr course
and it isn't a surprise judging by the number of votes.....
All the I formation and leaflets I gave are from the COPD TEAM that take care of me ,
It included Blf leaflets
had to learn about in books and have found out even more now there is google. (no internet when i was diagnosed)
When diagnosed with Bronchiectasis my gp gave me a leaflet print out from a Patient UK website, and I was given a page of instructions from the hospital physiotherapist re the breathing exercises.
I come away each time from the hospital even more confused because no one is telling me what the hell is going on with my own body
My nurse at my doctors surgery didn't know what pursed lip breathing was when I told her I learn about it from B L F !!!
Gosh, the results of your poll are illuminating. Bronchiectasis can often be first diagnosed as asthma or COPD and that delays the whole proper treatment thing. In fact, most surgeries seem to label it all as the same. After a chest infection which wouldn't clear, my specialist said (after an MRI scan) "You haven't got COPD at all, it's Bronchiectasis" and he showed me the pictures. From thereon I have managed it so much better. Info, info, info and training, training, training - it's all we ever need. Fingers crossed but this is my second winter with no chest infection even though I have colonised pseudomonas auriginosa. It seems I have managed in spite of them all.
I asked my G.P. what the letter said when I was diagnosed with COPD following a hospital stay and I was told that it was "sketchy" Been told also that I did not need to know what stage I am at. All information I have got since has been from BLF site.Polly4acre
Anything I know is from personal research and on line related forums.
Lots of leaflets at pulmonary rehab
Where can I obtain more information about COPD and how it advances ie at what rate even though I have stopped smoking over 8 years ago on discovering I had this. Also in November last year it's seems I developed phenomena at the bottom of my left lung, I have had an infection since while recovering. At the moment I fell as though I am permanently congested and soon get rather short of breath, I was told by the doctor in the hospital that my breathing would improve with time right now I don't fell that that is the case. What I want to know is what if any side affects am I going to be left with due to the phenomena. Are there any leaflets or such like that I can get to help with information on this, do the British Lung Foundation have any such information?
Virtually everything I know I have got from the Breathe Easy group.
The practice nurse , doubling as COPD nurse (3 day week, clearly no respect for patients & clearly would prefer to be somewhere else) gave me a pre printed form, that she has personalised for me, with my name & COPD 'stage' on and my current medication.
It also says 'you have a rescue pack to be accessed..' etc. When I said to her I hadn't got a rescue pack, she said ''cos you don't need one, yet'.
That was in June.
Clearly a box ticking exercise... which has been followed up by not being offered my annual Lung Function review for 2015 yet.
Impressed? Not a lot
i have never been given any info and when iv asked like you feel unrespected has i said in my comment this illness seems to be looked down on x
My impression is this nurse looks down on everyone... but I know what you mean, I've had it from ambulance paramedic., act as though it's self inflicted. maybe they're the same with obese people? Or people who fall off a roof? Or drunk? Or overdose?
I was already a member of Healthunlocked for another condition when I was diagnosed with Bronchiectasis so, thankfully I was able to find a lot of information on this wonderful website 😊
I did contact BLF myself for some info.
I have IPF never been offered rehab nor much info to depressing on fb as I thought I was going to die ,my hospital QE Birmingham doesn't have any pulmonary nurse so in between my 4-5 month hospital visits I am on my own. Condemned
your lucky i have servere copd and we only get to see a copd nurse once a year never have see a specialist i think its wrong it makes you feel so alone xx
Hi copd is delt with by your gp I have to attend hospital specialist as my condition is Terminal so please try not to worry easier said than done get as much exercise as you can good luck .
I have had absolutely no back up information whatsoever!
I have been diagnosed with a rare lung condition tracheobronchomalucia apparently there is not any literature on it & the BLF fo not have anything either & when I rang BLF the lady I spoke to could not help me either. It is very worrying and there is no support.
I was told I had COPD, end stage, and given no further information - written or otherwise. I had never heard of COPD and did not even know what the letters stood for. As I had been told I would live only 3 years I thought I had better find out what had killed me and hit Google with a vengeance. Some kind soul had left their post unlocked, it came up, and I followed it here and accessed the BLF website for leaflets (and I have outlived the prediction of my life expectancy by almost 200% so far!).
well done and i hope for many more years xx
I would consider my local surgery to be one of the best and all its staff , So I wonder if they have any information to pass on . will ask next time im there as everything I have learnt has been off here .
I got quite a few leaflets from the people at pulmonary rehab and even a relax CD.They included breathing exercises,diet and info about various inhalers.I actually got most of my information from right here and all the lovely folk on Health Unlocked!D. (Thanks folks)
When emergency meds were delivered there was a leaflet giving advise as to when they should be taken and when to call for an ambulance. There was a space, left blank for a named contact nurse and another blank space for a named doctor.
I was given information about Breath Easy and sent to Pulmonary Rehab. I also did a 7 week course about living with COPD that was presented by a BLF nurse and have gone on to do my own research and have volunteered to help with the courses although sadly not done any for about 18 months now. Have my yearly check coming up so will be interested to see if I'm given anything else. I've been very lucky this last year as I've managed to stay out of hospital even though I've had a number of "episodes".
It is obvious by the poll that we are all having to rely on ourselves for help and advice what's new?! Just glad i have you all to help for which i say thanks although i did have a letter from my surgery re my copd saying they are piloting a cold weather alert text messaging system! I have had copd for nearly 20 years and this is the first letter i have ever! received and by now know what to do as regards the weather! Take care all and at least it is not as cold although very windy here so i am staying in with a good book and dvd.
The leaflet was given in the very early stages when I knew nothing about the ipf so the information did not sink in. The time I needed the most information and clarification is after the various lung test, that clarity is what is lacking. Most of the information as to what is happening to me and the various things that I can try have come from this BLF site, not the medical staff which is a shame and sometimes very frustrating.
I was given information in Pulmonary Rehab
I have been given booklet and dvd from my pulmonary rehab class, but nothing at all from my Doctor or nurse. I have had copd for about 15 yrs.
I have COPD was told about year ago I would have some pain in left lung and feel tired but no other symtoms I don't really know what to expect and that leaves me bit scared my doctor never mentions anything about it and I've no information on COPD would going for second opinion be good idea
I found out more from searching online and finding this place and others while the nurses I see they are caught up in getting people though the door and out again. When I mentioned I had a BLF COPD passport they said "what's that". Recently when I had a check up I noticed on the screen it said I have had 3 exacerbations but not one ever said you are having one although I knew that it what it was.
Was given a printout by the nurse and told I was stage 3 ....... No idea and very frightened for months until my son phoned me up to tell me all about BLF and helped me enroll. Best thing I've ever done learned all about COPD. Learned about PR, learned to ask question and above all I learned I had many kind caring friends out there and I needn't be lonely and scared of my illness any more. Big thank you BLF for this site xxx
I was given nothing when I was diagnosed Moderate/Severe Emphysema two years ago, so thanks to Google I found the BLF and sent off for a pile of their booklets which were excellent. Then when I did Pulmonary Rehab I learned an awful lot of sound information and tips and we were given printouts covering all that we had covered in the sessions. I have subsequently followed this up with weekly Restart exercise classes at the local gym and Singing for Breathing, I also belong to our EasyBreathers Group, COPD UK Facebook group and this group of course all of which provide a lot of support and info xx
I have never been given any written information and had little verbal information, just a diagnosis and annual spiro tests. I have learnt most from health unlocked and the nhs web site. A standard fact sheet would be great.
nothing i had to google everything and scared myself into bad anxiety a illness that is still i feel looked down upon
Mine I'd called NHS
PORTSMOUTH
Clinical Commissioning Group
COPD
Your Self Help Management Plan
It is very good, just being tolled out in Portsmouth
These results are very shocking!! I've just been diagnosed with bronchiectasis. No info given just follow up appoint in 4 months.
I was given no information about copd when I was diagnosed. I was even told a chest x-ray was not needed which is against the NICE guidelines!
It was only when I found this great site that I learned much about it. I rang BLF and they sent out loads of bumph for me. I did learn quite a lot at PR but most of what I know I have learnt on here. God bless this site and the wonderful folk on here.
I mentioned this site a few times to my copd nurse, at PR and the local Breatheasy group but they didn't seem interested.
I was given a leaflet on COPD when I was diagnosed in 2006. And I get a self management booklet every year at my breathing test. And my last GP gives a print out of what ever you see her about
I was told I had copd and really that was it
The poll results do not surprise me in the least. As this as been my experience so far. No information giving by my Copd nurse or my GP. Even when questioning my spirometry figure's I was asked why I wanted to know. My answer to this was ," it's my body we are discussing remember, I am the patient and have a right to know" . I was then given my readings. At end of appointment I asked when they needed to see me again. I was told, when we send for you. In a very snotty manner. I agree with slot of the posts below, that healthcare , so called professionals, do seem to look down their noses at use Copd sufferer's. I think I'll take the advice below, and ring BLF, for more info.
