Pulmonary Rehabililitation Problems

I want to go on a Pulnonary Rehabilitation course, i went on one 18 months ago but had problems at the start of it due to an over zelouse helper on it, and did not finish the course due to a very bad viral chest problem that lasted about 3 months, my chest consultant, my Community chest Nurse, my GP and my Phychiatrist want me to go on one to help me get over the fear of going out and panic attacks, but they refuse to let me go on one, it has made me feel less than useless maybe if i shuffle off this mortal coil it will help them all

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28 Replies

  • I've just finished my second PR and found it as good as the first. Sorry to hear that you are being denied the chance but don't give up hope. In my area, the wait for PR is tremendous and so a few like minded souls got together, downloaded the exercises from BLF and now meat in a home or if the weather is kind, in a park or in a pub...go through exercising together. I shall carry on my exercises at home....not too keen on the gym...I find it boring....I also use a Wii machine to put some fun into exercise....even link through the internet to play folk I have never met...so the exercise can be got around. The info that you get, plenty on the internet from BLF etc, healthy eating groups etc but the real thing you are missing is the social life. Although our group gelled after four or five sessions, when you are exercising to a time scale, there is not a great deal of time for getting to know people or any in depth chat so perhaps your need for socialising could be met by joining another type of group....creative writing, art, car maintenance, even a darts or dominos team. Have a look around, there are more than two ways to skin a cat, keep on looking and give something new a try.

  • Have to say you have a great attitude Brian! I think because a lot of people become very restricted and therefore reclusive without realising it with our illnesses. And true, you don't really get a chance to bond at PR as the time goes too quickly. Getting together later is an excellent idea but you are probably more friendly in your neck of the woods!

  • I am fairly outgoing and like a good laugh but still find it hard to gel and bond with others. I've found it easier to have good social contact through volunteering and organisations like U3A...get out there and learn a new skill.

  • I too have joined a choir...my voice has been trained...mostly up barb wire but it does say Make a joyous sound to the Lord...nothing about tuneful or staying in key...fantastic social event too.

  • I don't think our Parish would put up with the racket i bellow out, but a good idea

  • there are more than two ways to skin a cat

    not while I've got breath in my body!!!

    resources for P.R courses are being denied to some because of those who have already had the benefit of one session as intended, create a situation whereby those in genuine need of a PR course never get a look in

  • never had the chance to finish the course and they notified my 2 weeks after it had started, so i do not count mine as a course at all

  • That sounds a bit miserable if you cant do it. Perhaps a call to the BLF helpline would be able to advise you what you can do (click on the red balloon in the corner) Good Luck TAD xxx

  • Great advice from Cornish Brian,there are always different things to try.Do try a bit at a time,to get yourself out there,baby steps at a time! Good luck with it,xxx

  • I've stopped going to my P.R. because it was to much for me, the first P.R. course I went on was light exercises, but now it's weight's medicine ball's!

  • PR should be tuned to your ability. Look around for chair based exercise sessions...most health authorities and municipal gyms have them.

  • That sounds odd Eskimo7, they want you to go but refuse to refer you? or do you mean the PR people won't let you on the course? That's a shame as there is probably only the one in your area. Try asking your doctor to refer you again, then go for the assessment and see what happens. Take care. Lizzy.

  • Hi, eskimo7, I have done the PR NHS programme and it has completely changed my life!!! I did have to use Oxygen but once I got used to that I just followed the Physios and nurses advice etc. I completed the 12 session programme and continued doing it at home at least three times per week and twice a week to the referral at our local Gym. there are lots of us who have done NHS PR and some have been on the same set up as me but for much longer, some have been doing for 6 years. It is just like eating , drinking sleeping etc. It has to be part of your life. Try again and good luck.Tets

  • Well I was told that if you don't complete the course , it is just suspended and your doc can restart it for you. It did help me get out as suffered from panic attacks as well. I stopped due to the winter weather as don't drive and cant get a lift. All the exercises can be done at home though if you are motivated enough. The idea is to start light or moderate and build up, no point in lifting light weights for 8 weeks!! Use ankle weights at home. Keep stepping. Just tell your gp you want a restart!

  • Hi Eskimo. Doesn't make any sense that you are being told by the medical profession that you can't have something that they are recommending for you as necessary for your well being. If you can't get them to sanction the PR for you, have a word with your MP or local councillor. Best of luck.

  • The medical teams are saying i should go on it, my psychologist (six attempts to spell that right). said it would help with my panic attacks my Consultant said i should be on it, my GP, the Community Nurse said i should, but alas the P/Rehab deem to think they are omnipotent, They have had about 30-40 arthritic people on the Pulmonary rehab course??? (they have there own services). Feel like giving up on it all what's the point of being stuck in 4 walls. Tried the MP & Councillor no luck not even a response, maybe the hospital trust are scared of being called racist if they pursue it. Glad the Samaritans listened. sorry for my late reply butter-fly take care Paul

  • Hi Eskimo, so sorry you are still trying to get on a PR course and getting nowhere especially as the consultant, GP and Community nurse recommend it for you. You could try Patients Complaints to try and get an answer as to why you are not being offered a place on the course. Please don't give up. You are obviously going through a bad time and need to confide in the medical people who are caring for you. It is at times like this we need all the help we can get. I do hope it all works out for you and wish you the very best.

    Kindest regards


  • Thank you Sara, did not think of patient services, i think having to fight for just what some people think as stupid, but it is like a little life line for me and for others no doubt. Take care and thank you Paul

  • Taking part in the social element of pulmonary rehabilitation is only one aspect, the information given is intended for improved self management of the lung condition. Exercise must continue after the course not wait until a place on another course becomes available. With limited resources we must use the education given on a course so that others have the same opportunity to learn and change their lives that those who have attended one course have had.

    Paraphrasing president Kennedy - ask not what can be done for us ask what we can do for ourselves.

  • Limited!! i don't think so, the last 10 have been up to six patients short that's with the arthritic cases (not lung related). My wife is an F Grade Sister so she feels bad about it all. if having very severe panic attacks about even going out is not serious and my psychologist has said it would be of benefit and my GP and Consultant and community nurse think would be very very good for me, and i did not finish the course due to a virus which had me bed bound for 2 months & suicidal and yes i do know about self management i just need the social side of it to help my head and lungs.

  • Hi Eskimo 7, If you are over 60 the Community Centers do a course in tie chi also they book church halls,it is so good for the body and mind also very gentle,I went on the PR but although I finished the course I found it so Hard I am 76 now and can't do much at the moment (Heart Gone wonkey)Hope this is helpful, remember as one door closes another one opens ask for information people in the Profession are vocational,they are willing to help,Regards Lola.

  • Hi eskimo7, can you try to build up your strength at home first...the BLF has a set of exercises...you can ring their helpline and talk to someone who can help you.

    Have you got access to a garden...if so you could spend some time outside now the weather is improving...as Wendell has said ....baby steps to build confidence and strength. I belong to a Breathe Easy club...is there one near you? Have you a friend who could go with you ...you can meet people in a similar situation and maybe they have an exercise group.Hopefully there will be a space soon for a rehab course.....take care...and as the advert says do it " cos you worth it"

  • I also think it boils down to money they are cutting back in our area its sad really because I saw a lady in our hospital a few weeks ago she was tucking in to two bacon baps and a lovely cream cake and she was going in for bariatric surgery the next day costing around £18,000. I have to pay for my prescriptions my inhalers are around £7.40 less than I pay for my prescription so where is that money going this world has gone mad

  • sorry who has refused to let you go on one? why give them the pleasure of shuffling of this mortal coil ? be a nuisance and make your self heard XXXXXX

  • Think i will be a pain there behinds then. good thinking

  • Thank you all for your suggestiions and help, cheered me up, think i will forget the choir i would get banned for making a mad cat fight sound melodic. I will download the info for exercise from the BLF should have seen it but things tend to become clouded when getting knocked back, we have 2 places that do PR around here neither are full and seem to used for people with artritis, instead, i did not finish the course because of a bad chest virus, they seem to deem that as course done, oh and i disagreed with them on Nebulisers and using them at home, i think they should be, but the new health code says not to, yet if i am admitted to hospital i would have antibiotics a nebuliser and maybe a sniff of oxygen, which is also frowned upon now which i have at home and why block a bed when my wife is a fully 22 year qualified nursing sister, (she is not 22) 22 years of experience, and i know if i need to be in hospital or not, my lungs and brain tell me, by the way i am 53 and could get a lung transplant or a bit of my lung taken out to make more room for the good bit. its just the panic that not going out for a long time has affected my confidence. will have another talk to my GP and the BLF and let you know what occurs, thank you again for listening to my ramblings Cheers Paul (must change my profile pic looks to much like me

  • hi eskimo, it does seem a shame you are refused this, it doesnt seem right at all, as this would obviously make your confidence worse, anyway, theres some good advice above, i am on the waiting list for this, but told it takes some time, i havent a clue what to expect, anyway its nice to see you cheered up a bit on your previous post,,and like me, think i would forget the choir,as i am like you "get banned for making a mad cat fight sound melodic" [made me smile :) ,, but true, in my case as well,,,,the best thing is as you say,have another "serious " talk with your g,p, and perhaps a word with the bif, i feel for you, but hope you get things sorted out,, best of luck, regards jimmy

  • Cheers jimmyw123 hope you get yours sooner rather than later

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