Conversation between respiratory nurse and patient suffering long term with anxiety/depression now recently diagnosed with stage 3 COPD...
'You'll never feel well again Mr .......; you won't have good days, just bad days and worse days...'
True he's awkward and not entirely co-operative, but really?
That’s a terrible way to speak to anyone. I do wonder about some people, not very professional. Xxxx
OMG! 😳I would expect to be reported if I spoke to a patient like that. Followed smartly by an investigation. How can the nurse expect to get away with being so rude and giving wrong information?!!
the persons remarks were totally inappropriate in this matter and they probably need to answer to their superiors,and probably undergo diversity training and how to deal with their patients in a more compassionate manner and also apologise to Pippers husband but thankfully this is not the USA and we do not line the pockets of lawyers and live in a society that seems to thrive on litigation for litigations sake.i think that making someone retrain and be able to use their skills in a more constructive manner is better than adding that person to the ranks of the unemployed.but hey ho just my opinion.
Mr Redsox we could go head to head and discuss the pro's and cons of both systems and i am sure we would both bore the rest of the forum silly with it but talking of facts CT scans in the UK are not a luxury and where deemed useful in diagnosis are readily available and free of charge within the Nhs.
i will retire now as i don't wish to hijack Pippers post with our differences of opinions or facts.
same to you kind sir,sleep well.
Oh Pippers how very dreadful. That is unacceptable and totally wrong. I am sitting here gobsmacked. Truly. *BIG hug* xx 🌸
Appalling!
Could not believe a professional person could be so cruel . You just prove him wrong because he is. Wishing you well
Excuse me but that is so wrong, I am at stage 3, borderline stage 4, but I have more good days than bad ones. One has to put things in perspective, true, compared to being normal and healthy they are all bad days, but given my state of health then the bar of excellence has to be lowered. With the all things that I can still do, leading a normal lifestyle, then those are good days, in fact, most days and thankful for them. Every now and again I struggle to lead my normal life and those are frustrating, bad days. It all boils down to ones point of view and expectations.
That is disgraceful Pippers but I think I can beat it. During respiratory tests associated with a drug trial that I was participating in a registrar said to me ‘ well luckily people with nasty purile bronchiectasis lije you are dying out’
I kid you not!
Oh no, how rude!
What?? Are you serious Hidden ? 😠
Yes absolutely Caspiana. There are so many examples of crass health prodessionals during my long existance with bronchiectasis. I was told many times from my teens to my forties that I should ‘feel lucky that you have made it this far’ . When I came back from the US in 1982 I went to a consultant who told me that by 40 ( I was 32) I would be in a wheel chair. I walked out of his office after telling him that he was wasting my time.
We have to stand up to these people and educate them. The best of them simply have medical knowledge but absolutely no interpersonal skills and the worst are bullies. Luckily, many, such as my consultant are knowlegable and kind.
I am upset reading this. Unfortunately, these people prey on the sick and weak. Disgusting behaviour. I'm sorry that happened to you. *Hug*
You are so kind my darling Cas. I am a tough cookie because of it I guess. All of these things, from the time at the age of three when I, as a very shy child was stood in only my knickers in front of a table of men and told that the horrible xray of lungs was me ( as he pointed his finger) through many examples of similar cruel and thoughtless behaviour resulted in my aquiring a sense of separateness and of my disgusting self that I guess still lurks.
That is why I try to support fellow lungies to gain control of their condition and of their relationships with medical professionals.
The acceptance and support of each other’s conditions and feelings that are to be found on this site are truly uplifting.
I for one have learned over the years to lift my head up and look people in the eye. To let people hear me cough and give them my opinion if they show their ignorance. Together we triumph!
OMG!!!!!!!!!!!!!!!!!!
Hi, in my experience many health care professionals from consultants to nurses are not at all ‘patient centred’ and seem to be unaware of how language and the way things are put can be interpreted.
At the same time I used to wish someone had done a bit of denial bashing with my Mum about what COPD was and what the process would be.
My whole attitude to health workers has somewhat mellowed as I see the pressures and work load some have, but that only goes so far.
I think of the saying ‘familiarity breeds contempt’ ; when you are doing this sort of work you lose sight that everyone is different and needs to be treated as that, you develop a patter that may be great for one person but inappropriate for the next.
Write a letter, explain how this was was not appropriate and suggest that there may be ‘a training need’ there.
I have to say that I have been very fortunate of late with the nurses that I have had the pleasure of meeting.
I keep starting to reply then cancel it, then re read this and shake my head a lot then start to reply then delete it and so on. But seeing the other experiences I want to share eventually. My dad had heart problems, he had stents, implanted difibrilater, open heart surgery twice. One time the doctor told him, you have no hope. Just give up. And he did. He stayed in bed all day and gave up. Then a new doctor came along. He said you can live, he was full of positivity and hope and encouragement and my dad got out of bed and lived again. The transformation was amazing. I got my dad back. No doctors should ever, ever, have the right to tell someone to give up and die. If someone is told there is no hope they can believe it. Just as when someone is told there is hope, they start living again. Words are very powerful and should be used wisely.
Wow - definitely needs reporting
That's shocking ! Reminded me of seeing a consultant a few years ago. In that year I had lost both my son and my husband- and a lot of weight. Yes I admit I did look frail but as I was leaving he said "well I'll see you in six months if you're still here " Didn't exactly fill me full of confidence ! Sheila xx
That is disgraceful and so mean. Should be reported. No nurse should ever say that to a patient.
I'm reluctant to report it as we're dependent on the practice ... but thanks all for confirming that I'm right to be indignant and that 'it ain't necessarily so'... now I just have to convince the patient...
Hi, the NHS charter which is on line states that you totally have the right to raise whatever issues you need to and that on no account should you be punished or treated badly because you have complained or voiced concerns. I understand that you may not want to cause problems for yourself, but that can work both ways. I found entering a Subject Access Request for medical notes going back a few years (following the Information Commission Office templates, also on line) seemed to change the way the surgery treated me. They get a bit more careful if you demonstrate that you know your rights and how the system (should) work.
Also, anyone can raise a grievance it doesn’t have to be the patient as often the patient does not have the strength to do it themself.
I'd like to ask a hypothetical question, if I may ? Let's suppose that somebody in the U.S. was unable to work because of, say, severe lung disease and needed a C.T. scan to check on the disease's progression. This person is unable to even afford a visit to the G.P.'s to get a referral for the scan, let alone afford the scan itself. So, could you please tell me exactly what "the norm" is for that particular, hypothetical situation ? Except, everybody knows that it is not really hypothetical at all. I don't think it's too much of a stretch to imagine this hypothetical person dying prematurely simply because he could not afford medical care. It's a fact that hundreds of thousands of people go bankrupt and/or lose their homes due solely to the fact that they could not afford what are sometimes basic and routine operations and the resultant hospital stays they entail and furthermore, I am willing to bet that the vast majority of these people are working families. Our N.H.S. has a lot of faults but absolutely nobody dies or loses their home because they couldn't afford treatment. That's just how I see things. Take care.
In the US anyone who is ill-regardless of their insurance status can go to hospital emergency room and receive treatment. And bill will come later but if you can’t pay it they can’t collect it. No one is refused treatment.
Hi Snowbrd . 👋
I am curious since I am awaiting a lung transplant, what about someone like me who needs major surgery and can't afford it? Will they still be allowed treatment then? And how about all the pre and post treatment required. How would that work? Excuse my ignorance on the matter.
Hi, yes, I understand that but in their eyes if you are a homeowner then you can pay. It's a well documented fact that medical treatment is the biggest cause of bankruptcy in the U.S. I've read anecdotal tales whereby people with life-threatening conditions or injuries have had to produce a suitable credit card before they're even looked at. I stand by my statement that NOBODY has EVER died or lost their home in the U.K. because of a medical condition or injury. Take care.
A most wonderful question. I can only speak of my personal experience. Should a chronic emergency occur, emergency rooms must: 1-save your life,
2. allow you basic comfort and direction for follow up. If you have no insurance you can apply for medicaid, but must be lacking sufficient paychecks, and will receive a small fine at tax time. I pay a full third of my salary for insurance with a $5000. deductible before insurance will pay 80% of the remainder.. Last year, I had an exasperation feeling like a heart attack. Wife took me to hospital at 22:00. I had tests and spent the night in hospital. It was just a hiatal hernia causing more breathing pressure. I was released 12 hours later at 10:00. The bill received within a month was $22,000. Insurance paid 80% after my 5000, leaving my total bill at 8,400. , which is an additional 25% of my salary. Naturally, they will wait for pay, as you can't get blood from...
One problem is fearing a return to see a doctor you still owe. But we survive. A full third of all home foreclosures are due to medical bills. No politics, just the facts in my life. And a friend of mine did almost die when his specialist demanded 10 thousand before his cancer surgery. Luckily he was laid off from job due to illness and was saved by medicaid. What a fun world...
But our temperature is not as hot as many your side of the world this week... 
Thank you for backing up my concerns with facts. It surely is a rotten state of affairs when you are afraid to be ill and risk losing everything you've ever worked for for you and your family for something which is completely out of your control anyway. I'd like to refer you to Caspiana's reply above. Hers is a very good example. How would the normal man in the street ever hope to afford major surgery when the co-pay, I believe it's called, is beyond the reach of most ordinary working people, never mind the actual bill. Furthermore, say I had major surgery, was in hospital, and god forbid, my son broke his leg badly requiring surgery and a stay then how on earth could I ever hope to pay for that as well ? Thanks for replying. Take care.
Dear friend, there is a time, usually instigated by fear or pain, that one figures to pay later somehow. The first question when entering the hospital emergency is,"what is your insurance?" If you have none, a medicare rep arrives to discuss this. Luckily, the angels in the ER don't know and don't care. Weeks later, the costs are apparent. I jump from doc to doc because I owe here and there. But it works out fine. We COPD-ers are quite crafty for survival. Same day surgery and release is medicaid protocol for broken legs or knee replacements (if required), so there is no major bill outside of surgeon and anesthesiologist and pain meds. I do have insurance, so I may get a night or two. And good post op therapists at only 20% the cost. Insurance cost is also, of course, based on age, pre-existing, and zip code neighborhood- (more crime/pollution =more insurance cost). My costs went up 100. month when I moved closer to town. I sometimes order my meds on the net from Canada, much more affordable. So that is my experience.
Thanks for replying. I've been trying to work out how much my 'scripts alone would cost if I had to pay for them. There are 28 items on my repeat. I think prescriptions cost around £8 so that is £224/month before I get out of bed - £56/week ! This does not include several items that I need but use on a 'as needed' basis. I think you'll agree that it's a substantial amount to find every week if I were able to work. Much to my disgust I really am unable to work for a lot of reasons but if I were and had to find that money every week it would be punishing for me. Luckily, thanks to the N.H.S. I would be able to buy a pre-payment card for I think around the £100 mark. ( I am unsure as to the exact cost so please forgive me if I'm wrong. ) So, I've got my 'scripts down to a manageable amount BUT I also see at least 2 or 3 medical professionals each week, whether that be Consultants, G.P.'s or even the podiatrist and I also attend courses such as Pulmonary Rehab. I have home visits and I'm also eligible for free hospital transport. ( I don't use it because I think I receive enough to pay my own way and I also rely upon friends and family if necessary. ) I also spend that much time in hospital I should probably be paying them rent ! This little lot must surely run into several hundred pounds a week at least. A normal, working man would find that impossible to pay for, I think. But, ah, you say, what about insurance ? Well, how would you be able to afford the premiums when you are too ill to work ? I read a debating forum quite regularly and the U.S. versus U.K. medical systems crops up often. Some Americans seem to think that we, and Europe, can only have our system because of cheap American drugs. This is patently wrong. We have drugs at a proper price because the N.H.S. can negotiate with Big Pharma because of its purchasing power - something the U.S. government could do were it not for it being in thrall to the lobbyists. Furthermore, apparently the bureaucracy created by the insurance companies is horrendous and it all has to be paid for by the patient eventually. The U.S. system is absolutely impossible for the less fortunate in society to access and gain the care that we all need at some point in our lives. I would like to stress that I am in no way whatsoever critisizing the quality of medical care in the U.S. but nobody could ever convince me that their system is appropriate and fitting for the richest country in the world in the 21st Century. Take care.
Recent months have found me coping a little better and I feared that my regular visiting community matron might decide to leave me off her list as a result. She told me that I would continue to be supported because what I have (COPD Emphysema) is not going to go away and that I will 'go down' again regardless off how I might feel presently. I think I might have been kidding myself that I could get better but it comes as a shock when nurses are so honest and forthright. Anyway today I feel better so I am going to enjoy it while it lasts.
My mental state is as important to me as the medication that I take for my lung condition. Maybe even more important. How could they speak like that to someone already experiencing anxiety and depression. Unforgivable! Mx
In the US anyone who is ill-regardless of their insurance status can go to hospital emergency room and receive treatment. And bill will come later but if you can’t pay it they can’t collect it. No one is refused treatment.
I live in the US and had a nurse say similar things to me - but there was more to the story. I was just diagnosed with moderate COPD but still smoking (had been having repeated chest infections but did not know I had emphysema). She told me that as bad as I was feeling, I would not be feeling better in the future if I kept smoking. Her words were hard to hear, depressing, but she was saying the truth at the time - I was not on a trajectory to be feeling better in the future. The situation you described may be completely different. I’m not trying to draw a parallel, it just reminded me of that day.
Understandable when first diagnosed p'raps to emphasise the need to quit smoking, but having stopped immediately it seemed a bit harsh to repeat it six months later...
Dear Pippers, I am aghast, but not surprised. There are pros in all fields in need of a high colonic.
After my ooo's and arrr's of reading these Great Comments (only on this Forum) I had to Go Back to the Top to see the Original Comment by Pippers. Thanks everyone for a Great Saturday Morning Education on Both Sides of the Pond. xxxxxx
Much, much too long! Almost 10 years! My doctor pleaded with me to stop, my husband shouted at me to stop, and my children cried at me to stop. My sister, who was diagnosed at the age of 30, died of this disease when she was only 45 following a transplant that had complications. My father had it (he died from a lung tumour), and his father died from it. Absolute madness for me to have ever smoked let alone keep on doing it! It's been 5 years since my last cigarette, but it was much too late. By then my FEV1 was 32%, it's now 29%.
.... Well you did ask 
Mx
Me too Michelle 32 %. xxx
Help needed! 😔
help needed with a deep hacking phlegmy cough.
Helping to Raise COPD Awareness.
Help with Bronchiectasis flare up.
Self help for Emphysema
