Hello everyone, so I have stage 4 emphysema and I am currently on ambulatory oxygen mainly for when I'm out and about, and for use at home if needed. My problem is that last time I was admitted to hospital, I was told that I was being referred for zephyr lung valve treatment. This was months go. I originally got a phone call from adult social services, shocked that somehow the referral had gone to them. There was nothing they could do, obviously, except tell me to contact my consultant. There lies the problem. I don't know who my consultant is because I keep seeing different people. I keep getting letters stating that I am going to receive an appointment via phone , every single one cancelled, with a later appointment months away. I'm still waiting for said appointment 8 Months on. Disappointed to say the least. The last time I was admitted to hospital with a chest infection, the consultant on the ward suggested that I put DNR on my hospital records because he thinks that it's a waste of time trying to keep people like me with copd/emphysema alive, because our lives are basically over, it's just a waste of time and effort on their part. I cried and cried. My family are furious. Now I'm too scared to be admitted to hospital. I have made an official complaint about him. Can you honestly believe that a Dr would speak to someone like this ?? I have lots of life left in me. I'm only 45. Just don't know what to do now. Sorry for the long post . Love to you all . Natalie x
Feeling drained with NHS where I live - Lung Conditions C...
Feeling drained with NHS where I live
good morning Whitewitch42, I am so sorry you have been through this with the Dr regarding DNR. last year I had something similar while I was in hospital where the young Dr on the ward just casually said to me , whilst taking blood gas test, “you should consider putting a DNACPR (do not attempt cpr) on my medical records for the future” I was shocked and said it’s something I need to speak to my husband and family before making such a decision. On returning home I read the discharge form and to my horror I found this Dr. had put it in my medical records without my consent. I was furious and the started the process of getting it removed, not just from my hospital records, but my GP’s too. It took a while, but got it removed. There may come a time when this has to be implemented, who knows, I’m 66 so quite a bit older than you, but not ready to go down this road just yet.
I hope you stick to your guns and that your treatment will continue to the standard you deserve, I’d go to GP and insist they refer you ASAP for your appointment.
Best wishes
Jan
Thankyou for your reply, that's basically what happened and I too said that I needed to speak with my family before agreeing to anything. After reading your reply and the Dr still went ahead and put dnr on your records has made me determined to check mine now. It's disgraceful and I'm glad you managed to get it taken off. Xx
That is disgraceful. I suggest that you contact your MP about everything. You are being messed about by the NHS and that doctor shouldn't be allowed near patients.
That's what my sister in law advised me to do. You are right in saying they shouldn't be allowed near patients x
Get in touch with pals
I am furious hearing over and over again that people find out they have a DNR without knowing anything about it. Part of the Tories' mass murder! If this would happen in Germany, Switzerland etc. people would go to PRISON for that! Whilst on the other hand I and many others are forced to keep suffering utter hell by being denied assisted dying! These cowards can't even decide whether they want to get rid of us. It is DISGUSTING! Living and dying should be NOBODY'S choice but our OWN!
This goes across all political parties and especially when you consider how left wing many in the NHS are. Pru Leith’s son is a Tory MP. She is pro-assisted deaths and he, as a Christian is anti assisted deaths. They recently did a documentary where they went to Canada, which has under Truedea a very liberal pro-assisted death agenda. It’s actually euthanasia. Peru’s son is a Tory MP and so is Jacob Rees Mogg and Ian Duncan Smith. As Catholics they’re all anti-assisted deaths and euthanasia.
*Pru’s son
I have just seen your comment now. It didn't notify me somehow. In the meantime I was mailing with government members and ministers and have to say that all these Tories (Gove, Wallace,Tugendhat,Dowden,Mercer,Maudont..) would like to see that law installed, but the Ministry of Justice said that we need about 20% more parlamentarians to vote FOR it. I trust myself to convince them, but I don't have their email addresses. They are only allowed to answer their own constituants anyway 😩
I haven’t much more to add to what has already been said except to get on to your GP to chase the appointment. There was a big delay in my husband’s treatment and when I spoke to ………..it might just have been the person who answers the phone…….she passed it to the practice secretary who contacted the hospital. We got a letter about an appointment within days. The appointment was some time later, but at least there was one! I think sometimes we can get lost in the system and a timely reminder from someone that there is a person behind the nhs number does the trick.
You could also try ringing respiratory secretaries at the hospital. You do not need to know the consultants name; they will find you on their system. If you have a hospital number (you will find it on any letter you have from the department. If you could get someone to ring on behalf, that might be even better - to let them know that you have a very concerned relative and your GP fighting your corner.
Hi, thankyou for your reply. So I finally managed to get a face to face appointment with my Dr yesterday. She is furious. There is absolutely nothing in my notes regarding the appointment/referral. She has written to the consultant demanding answers. She has promised to help me. Good to know she's on my side. Thankyou again for your reply. It's warming to know there are such caring people on here. Sending love and best wishes to you ❤️ xx
Well done 👏👏👏
Respiratory secretaries, please don't make me laugh. In Cornwall most of them are still working from home. I have tried and tried to contact my consultant's secretary with no luck. Used to be a very efficient way of going through them to contact consultant
I agree I also live in Cornwall x
How dare any consultant or doctor say to a patient "your life is not worth saving, put a DNR on your records.
Shoot them with a full dose of sedation (the consultant) if you are still breathing even with oxygen then your life is still valuable (to you) and your family,friends.
Natalie, GET A NEW Permanent Consultant. and kick this person into the long grass via their rear end.... I am so angry for you... these are people who took the oath to preserve life and help improve quality of life .... GOD, You are only 45...AHHHHHHHHHHHHHHHH
I AM SO UPSET FOR YOU. Prove the devil wrong. all the very best and kind thoughts to you and your family. Tom.
PS ..... I agree with all of the above comments... Some of the respondents Including myself have experienced bad manners and total disregard for patients Not all health workers take the attitude that life is not preciouses, I am 71, and I still draw breath and hope to do so for a long time yet.
Thankyou for your reply Tom. It's good to know there are such caring people on here. I spoke to my Dr yesterday and she is furious. She has written to the consultant demanding answers. Good to know she is on my side. Sending love to you ❤️ xx
Hurray, at last you have a medical doctor willing to fight your side.
As 02Trees says below it is appalling at any age to be confronted with this unwelcome bombshell.
I hope you now feel a bit easier In the knowledge that these kind of decisions should only be made at the request of the patient and not made on your behalf by anyone else.
Life is precious and you only live once, so, as the song say`s, Hang on tight to what you`ve got...... family and the right to be your own master.
Love to you. Tom.
This is appalling, really shocking. It would be dreadful at any age, but 45?! Hope all the great comments above give you strength to deal with this. Thinking of you and hoping this gets resolved.
Thankyou for your reply and kind words. Sending love to you ❤️ xx
Disgusted that you were treated in this way, report to PALS and inform them how much his comments have affected your life. At the same time tell them about your appointment and how this is stressing you out, You can find the PALS number on your hospital website, Very best wishes x
Thankyou for your reply. It's warming to know there are such caring people on here. Sending love to you ❤️ xx
I have a DNR in place as I was told my lungs are so badly damaged that resus would not be successful. I have end stage emphysema so it made sense and I didn't want to end up on a ventilator for my hubby to have to decide to turn it off.All that said I am much older than you and find it acceptable for me but I would certainly be taking action in your situation. Best wishes.
Thankyou for your reply. My thoughts are with you. Sending love to you ❤️ xx
I discussed having a DNR with a very nice doctor at my local hospice when I attended a day course they run. It seems different counties have different practices. I am in Herefordshire and have something called a Respect Form. A DNR can be noted on it but other information as to how you wish your treatment to go. At this moment I also have on there that I do not wish to die alone. I am 69 and on 24/7 oxygen.
Thankyou for your reply. Sending love and warm hugs to you xx ❤
Absolutely appalling no one should say that to you . I would make an official complaint and demand an apology stating all the upset this is causing you Have you got a Respiritory team ? as they will know who your consultant is. Good luck and I wish you good health xxSheila is 💕⚘
Thankyou for your reply, yes I have a respiratory team . I have spoken to them and they are furious. They have written to the consultant. I finally managed to get a face to face appointment with my Dr's yesterday and she is disgusted. She has also written to the consultant . It's good to know she is on my side and willing to help me. It's the first time I have managed to see my Dr face to face in 2 years. It's nigh on impossible to get a telephone appointment let alone a face to face appointment. Sending love and best wishes to you ❤️ xx
That's great news. Hope you get an apology at least xx Sheila 💕⚘
Sorry to hear your problems - but I think the inefficiency of the NHS covers all departments and areas.
Like yourself - I had had DNR on my records - I assume it was someone at the last hospital I was taken to following my third exasperation- when it took 8 hours for an ambulance to arrive - my wife thought I was a gonna.
Now I never see anyone - if I request anything - I am passed from pillar to post. I believe that at 86 years old they have made a decision - I am more likely to have a heart attach soon - which will solve any problems for them.
Meanwhile, they don't have the humanity to explain the situation and perhaps provide me with some medication - whilst my wife watches - unable to help.
They don't deserve the money they are crying out for - none of them.
But we have to keep our chin up - and just try to get the best for our taxes as long as we are able.
This is terrible to read Albertdog and fear that you are right in what you say, sadly. There is so little care and compassion from people now you do wonder how things will progress. Do you have any children that could organise things for you. When my Mum got to your age I was the one that did battle for her when things went wrong and believe me I put up with no nonsense after watching how they treated her in hospital. Its not the way things should be but we have to look after our elderly. If you need medical care use all the organisations out there, even Help the Aged if you have to. I wish you all the best and as you say keep your chin up x
My Friend, It doesn't matter WHAT AGE you are, in fact, at your age you have been taking decisions all your life without someone else putting in their pennith worth (except for our wives ) of course.
I admire you, you (regardless to whom may say what) still have the ability to think, act and love.
Good on you and may you live forever in the house of god and your family.
Keep on at the pillar and post folks, It's your right and you should expect nothing more than respect,,,
Kindest regards.... Tom.
Omg I am so mad for you and can't believe that a doctor had such little regard for you because of your condition. Its good to hear that your gp isn't standing for this and taking things further . The nhs is getting worse x 😡
While you wait for answers make sure you write a letter stating that you expect all and extraordinary measures to be taken to sustain and treat your condition and life, if entering hospital again.make sure you have this witnessed.by some one friend or family .keep a copy maybe on your phone and either hand in person to hospital administration or send as recorded delivery through post.keep safe x
Hi Whitewitch42
you should never get spoken to like that, consultants think they are god and have'nt been on management courses. have they heard of motivation instead of demoralisation. I have seen more consultants in the last few years than we have have prime ministers! the last one went off to Dubai for more money(not that they don't make enough from all the private work they do) to be fair I have just seen a new consultant and he was fantastic, had even read my notes.
All I can say is don't let it get you down, there are always bad apples in every walk of life, if he is like that he cant have many friends outside and pity his partner. ask for another consultant and an apology hope you can move forward
Frank
I'm glad to hear that you have a decent doctor. I hope she can get things moving. As for that horrible doctor, he should be sent somewhere where he can learn humanity and kindness. (Mars perhaps.) Don't let him get you down. I'm sure there is plenty of life in you yet; if he had no constructive ideas on how to get the best quality of life you can have, he should have kept his mouth shut. xxx
This is horrible that the doctor said dnr, but unfortunately as you know they don't have empathy, I think it's in the job description, alot of us who suffer with this terrible disease are so far gone that they will do more damage to to our lungs trying to perform cpr, I'm not defending the doc, but before that decision is reached it should be agreed with the patient, these illnesses cause enough anxiety you certainly don't need dnr put on your notes, I wish you all the best for the future, wheezy
They kept trying to push to get a DNR for my mother. Refuse and insist on looking at your record. Also complain to PALS. You are still very young and have a future and you can still get about. You might find that probiotics now helping those with respiratory problems might help you and eating a diet that’s now recommended for a healthy gut, which is eating 30 different plants, including herbs and spices a week. You can also get more into your diet through veg soups, stews, salads, extra veg on your dinner, adding herbs, Mediterranean roast veg and you can use a blender to make drinks combining fruit and veg. Check out Professor Tim Spectre on YouTube for a plant based diet. Vitamin D along with Vit K2 (not Vit K) and zinc help prevent infections, though zinc shouldn’t be taken at the same time as antibiotics as it can interfere with them. Check out Dr John Campbell’s YouTube channel. He’s done many videos on Vit D and the correct dosage - itv.com/news/anglia/2022-04...
catching up! Horrified. Think you’ve not been well treated, hope you can get new consultant who has a more positive attitude. Reading all the posts here shows how NHS is in problems. A few years ago I thought consultant then seeing wasn’t good, and my daughter helped on line to find another consultant who knew about my rare condition born with PCD, and she’s been very good. When can’t see her have teleconsultations. Best wishes for good future treatment. Jean x
hi
I too was asked this question by a physio at pulmonary rehab, I went ballistic, how dare they ask this question, no one has told me I’m at the end of my life. I’m now not sure if they automatically put this on your records even if you say no.
I’m going to have to check this out, I’m certainly not ready for my life to end, I have a lot of life in me and going to remain that way. It’s disappointing that it’s assumed this is how they deal with lung conditions, outrageous .
Home.
Consultants
What would you do?
Still in hospital 
A horrible, drained feeling upon waking up from a nap.
