What’s your experience of pulmonary rehabilitation?

In the 5 years I’ve worked at the British Lung Foundation, I think only one person has told me that they didn’t like pulmonary rehab. But I know that not everyone finishes the course, so there are probably others out there who feel the same.

Most people I speak to love it. But sadly not everyone is able to get there.

What was your experience of pulmonary rehabilitation like?

And if you haven’t been, what happened when you tried to get a referral?

Again, we hope to mention some of your comments at the COPD and asthma audit meeting next week. But even if you don’t have those conditions, it would be really helpful to hear from you, as your experience can feed into the work we’re doing at the BLF.

Many thanks for all your help with this!

(I promise it'll be my last question for a while. Or at least this week. Probably.)

Bethany

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85 Replies

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  • I have attended PR 3 times and know how fortunate I am. The first time I did not really appreciate it as I was still working and quite 'able'. The second was fantastic and I learned a lot from the talks (which were largely missed on the first due to work commitments). And the third was much gentler as my ability decreased but still absolutely wonderful at getting me going again after being in hospital and having declining energy and muscle wastage. I still have ongoing help as the respiratory physio calls in to check on me every couple of months. God bless them all.

  • Hi

    I enjoyed my pulmonary rehablitation.

    Educational gives you confidence.

    Despite being in a central location, free parking various arranged transport option. Getting there was a problem for some ( being one hour to early)arriving home later, could equal a six hour session.

    I was ok blue badge could park outside door, even though it had two hour restriction non applicable to blue badge holders.

    Holidays was a another excuse for non completing

    Three just did not return after first week no explanation.

    I think location could be looked at better, local community centres, church halls, local gyms.

  • This is really helpful, thanks Stone

  • I am actually half way through my third Pulmonary ReHab.

    My first one was many years ago when I was only mildly having problems with Emphysema.

    The second one about five years ago was when I was beginning to have more problems so found the ReHab very helpful.

    This one I am finding harder but only because my lungs are nowhere near very good. My COPD is now classed as very severe.

    Pulmonary ReHab is brilliant for those of us with lung problems.....it really does help.

    Apart from the gentle exercise, we also have some excellent talks given by Medical professionals. One hour of exercise and one hour talk. The talks are not every session....out of 12 sessions we have talks at 4 or 5.

    I was referred by my Respiratory Consultant but I know some were referred by their GP.

    I don't know what happens in other areas, but we get picked up by taxi and brought home by taxi......paid for by the hospital.

  • I think you could persuade anyone to do pulmonary rehab when you describe it like that!

  • wow am impressed your hospital pays for transport last time I went I had to pay for my own taxi so worked out at £10 a session for me - very expensive I did find it worthwhile but am not sure I can afford to go again.

  • I don't know why, but it could be to prevent anyone for not participating if they couldn't afford the transport costs.

    The odd one or two do use their own car but the majority use the taxi.

    If patients are from the same area there could be two or three others in the taxi with you.

    Tomorrow I am expecting it to be only me as there is no one else from my area going.

    My very first ReHab was at a different hospital and we had to get ourselves there.

    I will try and find out if they have some form of funding to allow them to pay for transport.

  • Hello - new to this site and I hope you don't mind me asking - how did you get to see a respiratory consultant - the reason I ask is I was advised by a doctor at the hospital to ask my GP to refer me to a respiratory consultant but they have refused saying there is no point - we know what you've got - COPD (or they said I could call it emphysema if I liked!!!!). Just curious as to why they won't refer me so any light you can shed on this would be appreciated. Thank you also for your informative comments about pulmonary rehabilitation - I am due to start in May and am now quite looking forward to it.

    Regards. Annette

  • annette77 Hi annette, I saw my consultant (the guy in charge of the respiratory dept.) after my lung function tests which were done previously. It was very brief, he seemed to be very busy and basically just gave me a packet of Spiriva and a packet of Antibiotics and told me I would have to look after myself. I didn't have any questions ready as it was all new to me but expected more. This could all have been done by a lesser being. I did not ask to see him, it was just the process of this London hospital and as far as I know he is still my consultant. I spoke to his secretary a couple of years ago as I had heard that he was trialing the Aerosure device and I wanted to know if they had come to any conclusion on it which they hadn't.

    You will probably learn more from the staff at pulmonary rehab so good luck with that.

    Stay well, Jo

  • Thank you jo x

  • Hi Annette, if you haven't spoken to the BLF Helpline about this yet then you might find that helpful. They can advise you on what care you have a right to and how to ask for it in a way that means your doctor is more likely to listen. The number is 03000 030 555.

  • Thank you be than I am speaking to the blf this morning on another issue so will ask them. A x

  • Sorry autocorrect should have been bethany not be ! :(

  • I forgot to say that the Pulmonary ReHab I attend is held in the Physio gym at the hospital with a physiotherapist overseeing everything.

  • Is that Sunderland or Newcastle hospital.

  • I have never attended PR because my primary diagnosis is Bronchiectasis, not COPD. I was told I wasn't considered suitable but when I pushed the physio for an answer, she told me why. There are huge waiting lists for it here, so hard to get a place. I was quite upset when someone I know slightly who has mild emphysema got a place. This person has no breathing difficulties at all and was complaining bitterly about 'having to' attend. No justice is there ?

  • I can only begin to imagine how that must feel Billiejean. I'm so sorry.

  • That is bonkers BJ - during my second course there was a woman there who had bronch. There was no question about her right to do the course and the benefit she would gain from it. Sorry you are being excluded.

  • It's a swings and roundabouts situation, I suppose, O2. We seem to have much better and easier access to GPs then you do in the UK but PR is not widely known about here, let alone available to all who need it.

  • None at all BJ. I am sure things will improve. BE, is becoming more to the forefront (not before time I know). It does seem crazy people are having 3 goes at PR (not that I resent that in any way) but you cannot evenf be considered. You would have enjoyed the excercise but the talks are not designed for BE, although there is a little bit of overlap re the talks about inhalers but the rest - some would be too simplistic for you, some woiuld not apply and lots of stuff for us is missed eg length of abs - no in depth physio advice.

    Hopefully things will change in the future. Ask again and ask why the excercises would not be of benefit to you. I'm cross on your behalf.

    love cx

  • I have bronchiectasis! I was referred by my consultant and GP. I was the only one with bronch and I was also the fittest. I gained a great deal for it but have stopped going because I now have serious heart disease and have jusy had a Stent fitted. I hope to do a coronary rehab soon.

  • Hi I too have bronchiectasis. I had PR several courses but had to leave as was always hospitalised with bug after a few weeks. Now have home care and taking part in home PR. My sats are always in the mid 90s but the physio always makes me use oxygen for exercise. I feel fine doing it without oxygen, but when I use it I get sleepy, dry mouth, dizziness and general unwell feeling. Now I understand they may stop the therapy if I refuse oxygen - even though I have been diagnosed as a co2 retainer in the past but not any more. Any advice please?

  • Hi Lindajane, I'm so sorry to hear that. I'm not medically trained so I don't want to risk giving you the wrong advice. Can I suggest calling our Helpline though? We've got specialist respiratory nurses and advisers who might be able to help. The number is 03000 030 555.

  • Never been offered it! Probably too old now.

  • I'm sorry to hear that Pete. I'd hope that wouldn't be a reason to stop you having it.

  • I asked my doc if I could be referred, I'm 77 and am not the youngest one in our group so you might be pleasantly surprised if you ask.

  • You're never too old Pete. Don't wait to be offered hun, you ask them. Go for it!

    love cx

  • I was 76 when I did mine!

  • PMRPete Hi Pete, ask your doc about it, he may refer you, ask where it is in case you would have to travel too far. Good luck, Jo

  • Hi Pete. I have been on Pulmonary Rehab Course twice and now go weekly to Breath Easy Group. I am almost 75 and have now been referred to Falls Classes. So perhaps you should have words with your GP. P.S . People with COPD are prone to falling.

  • PR was OK but due to the waiting time I signed up for a pulse course. By the time I went n the PR course the exercise elements were of little use. The educational hour was more interesting.

  • I have attended PR quite a few times, and loved every minute of it. I can't wait to go back again. The people are all lovely and its a big help to my health, it gives you confidence and you always make new friends.

  • I was offered PR when I came out of hospital 3 years ago I found it so informative ....we had discussions and different speakers for the last half hour of each session these covered all subjects relating to COPD.

    The exercises were graded to each persons capabilities...... everyone was very supportive and encouraging.... the fact that there were others there with just the same illness as you made you feel a little at ease. I was given lots of information about the illness and the opportunity to meet and talk with others who suffered the same.

    It was held in a room at the local cottage hospital so there was lots of room for parking and not to far to get there.

    After the course I was encouraged to join my local gym under referral from my doctor i have been going ever since I feel this has turned my life around I have gone from severe COPD to low moderate my breathing has improved so much. My doctor and my family are so pleased with my results as am I and it was PR that started me off on the path. Don't miss understand me I won't be running any marathons but I am a lot better for the little bit I do 2 days a week.

  • That's amazing, I'm so glad you had such good results!

  • My first rehab session was, understandably, a strange new experience. From then on I got stuck into it. For most of the talks and education I was already well up to speed from reading all about it on the web and had to bite my tongue answering any questions, to give the others a chance. I enjoyed all the sessions and it re-introduced me to exersise and most importantly the biggest lesson of all, taught me not be afraid of getting out of breath and how to breath.

    Bitten by the exercise bug, I set up a little home gym in the spare room, I continue to exersise, at a much higher pace and continue different breathing exercises. I think it would be a great idea to extend the standard rehab, for those that want it, to this higher pace of exercise. It is this higher pace of exercise, breathing techniques and the correct balance of inhalers that I attribute to my hugely improved lung function. This is in spite of also having Peripheral vascular disease.

    My quality of life has improved by just as much. I can do a day's work, go home for a scrub and brush up in the bath and wash my hair, all 18 inches of it. Walk 4 kilometers of hilly terrain and return home having had a cooked meal and a pint or two. In my "darkest hour" it was walk 35 yards and quit. A day's work was very near impossible, get home, taking 10mins to get up the 3 flights and slump on the settee in my work clothes and ashamedly have gone to bed without having enough energy to even bother washing!

    Pulmonary Rehabilitation has to be one of the most unrecognised, valuable resources that the NHS has. But I feel that it needs loads more research and development to gain it's full potential. There is so much more to be done in this area yet. I know this to be a absolute fact, my results don't lie.

  • I love this, well said!

  • Have done PR 4 times in the last 18 months, regards to PMRPete I don't think age is a problem so long as you are in a position to be able to do it, had people must have been late 70s do a course on one course that I was on. I had to do an assessment and 6 minute walk test to be allowed to do it. Because on a drop in my condition I have been told I will be automatically put down for the next course, waiting for start date to come thru the post.

  • I start mine may 9th first time was referred and assessed within 2 weeks with a start date given on assessment. It will be my first time .I exercise daily tai chi walking yoga whatever I can to help myself ... I have already looked into the copd circuit at my local gym when done at PR onwards and upwards...I will drive to the PR it's only 15 mins in the car for me xxxx

  • Have been on one pr course starting in January 2016. Found it most beneficial, was told that I could only have one course per year, which is a shame but I understand that there are limited places available. I have been trying since last September to get a place for this spring but they seem to be having problems with their booking system.

    My health has declined over the past year, my stamina and flexibility are pretty low at the moment but I am loath to join a keep fit class as I doubt whether they would be willing to take a student on oxygen and who would probably be unable to complete the first exercise.

    Being with people who have the same health problems was such a relief as I felt I did not have to put on a bold front and plough on when I realised I was labouring. It was great to be able to chat and socialise with people who had the same difficulties and did not stare at me.

    I know in these days of cut backs and tightening our belts there are many calls on the Nhs

    But I do hope that the service can carry on a perhaps expand.

    Sue

  • I hope you're able to get booked on again soon Sue

  • Hi Sue. Have you tried Breathe easy classes. I attend them and quite a few people who attend are on oxygen supply and do very well .

  • Will let you know when I actually go on one. Still waiting for assessment...then there is a waiting list oh and as I am quite fit I am not really a priority. lol..If it was just the exercise part I would not be brothered as such but a lot of the course is education which is just as important as the physical side.

  • Both my courses were brilliant. And not only that, but now the physios run an ongoing weekly 'maintenance' session (£3.00) for those who have finished the PR course and want to continue. The exercise circuit is exactly the same as the course but you can choose to use the space exactly as you wish as long as you don't get in people's way. I love it and then a little gang of us go for a late lunch at the cafe in the spiffy newly built church premises where the course is held.

  • In 2003 an x-ray confirmed a diagnosis of Emphysema and later tests a diagnosis of asthma. I started PR at the hospital immediately and while there learned so much about lung diseases. While exercising on machines like the Nu Step and treadmill, the instructor talked and showed power point lessons - it was so informative. Unless I had a job, I have continued to take part in PR.

  • PS - Our PR is twice a week for an hour and costs $3.50 each time I go - very reasonable.

  • I started PR yesterday, I enjoyed it but was expecting it to be a little more challenging. I thought there would be more equipment, there's a step, balls of different sizes and weights, dumbells and also 'something' to step sideways over. I thought there might be exercise bikes or treadmills but it's only a small group, there are just five in the class. I did wonder if the equipment varies according to the venue, the one I go to is in a village civic centre. I have mild COPD, at least two of the others are severe so probably for them it's challenging enough as it is. I was given a choice of venues but as they all involved two bus journeys to get there I picked the one closest to home knowing that on a good day I'd be able to walk part of the way down a traffic free footpath. My doctor was quite happy to refer me so that wasn't a problem.

  • My GP referred me when I was recently diagnosed copd stage 2 53% and bronchiectasis. I am 57 . BMI 38 . Staff brilliant. Learnt so much in 6 weeks. I now know how to manage my breathing. Also correct way of using inhaler. Am now exercising more. Got a referral to nhs and council run fit4life 12 week exercise programme afterward so I am now continuing what I did at rehab.

  • Hi Bethany, I was never actually referred by the hospital to Pulmonary rehab. When I asked about a private rehab course, I was advised it costs around six hundred pounds and was pointless as it would only cover what had already been done for myself at the local hospital . Following a flare up, I questioned no rehab and my Gp referred, eventually I ended up on a course called life long lungs, which included a rehab group for both lungs and heart problems but had to stop after fourteen weeks due to flare up of arthritic pain, umbilical Hernia and no change in my weight or breathing. Was advised by Physio that the exercises were the wrong type for my arthritis but the courses were supposed to be designed round your individual health , so I have never been back. I did feel the exercise regime they gave me was merely aimed at reducing my weight which did not succeed as I became more immobile, with pain.

  • That really surprises me Katie. How sad that they didn't help you adapt the exercises so you could benefit from it.

  • hello Bethany, it is a pity they were not more obliging especially as they work in conjunction with the hospital, council and Age UK. There is also a GYm at the local university but they only accept fit persons :) our investigations show.

  • I went on a pr course 2 or 3 years ago and found it very beneficial. I have recently had pneumonia, and when I recovered I asked the hospital clinic if I could go on another one. I heard after about a month that I will be starting shortly. It's a ten week course, and I'm looking forward to being able to improve my chances of better lung health!

  • Hi, I suffer with emphysema and Chronic heart disease. Presently when I am able to, I attend Cardio rehab twice a week , which is very good and run by a smashing heart failure team. So far I have been sent home 5 times and laid off for 2 weeks due to chest infections,told to see my GP who put me on antibiotics etc.In contrast to the Cardio team, I haven't been offered any help or advice from my respiratory clinic. I was just diagnosed with Emphysema/ COPD and given a couple of inhalers and told "see you in 12 months". I have got an appointment to see a physiotherapist in May so hope things will progress from there. I'm so glad that I've found this group and have picked up quite a bit of info from the great members on it.

    Kind regards

    Grayjay.

  • Although initially apprehensive, I really enjoyed PR and would love to do it again. The biggest problem was being able to travel there, it would have meant a long walk to the bus stop and two bus journeys, so I had to pay for transport, an expense I worried about as the course went on for 10 weeks , two days a week.

    At the end of the course my fitness had definately improved and i had lost some weight, another small miracle, but I was disappointed to find there was nowhere locally to continue with a gentle exercise regime under supervision with others with similar problems.

    As someone who finds it difficult to leave the house, along side the physical benefits I must emphasise the social aspect of PR. Mine was good size class of all abilities, welcoming and friendly, and we had fun, made new friends, and learnt loads, all under the watchful caring eye of a Physiotherapist and nurse. And we all know the importance of not only doing the best we can for our lungs, but equally for our emotions.

  • This is really helpful, thanks Huffnpuffer

  • PR is the best thing that happened to me in the five and a half years since I was diagnosed with emphysema.I have had 4 referrals in 3 different venues.I highly recommend them and have always felt the benefit afterwards.

    Cannot recommend them enough.

  • I have to say – and I feel very guilty and ashamed of myself – but I did not like it at all. I did the full course once, and tried again last year but was so upset after the first session I decided not to go again.

    The “class” was full of people a lot older than I, and also a lot fitter. They were able to complete all the exercises and one lady was singled out by the course leader as being 82 years old, able to do the three minute walk almost at a trot, not to mention cycling to and from the centre. I’m 59, and struggled to do even one circuit of the walk, so my confidence was further knocked. There was only one other person on the course with breathing problems, he was even older – 87 – and was also able to do all the exercises much more quickly and easily than I could. The rest of the class, as far as I could tell, was made up of people suffering from angina or getting over heart attacks, so I had nothing in common with anyone.

    What made it worse was the attitude of the physios. They insisted that I needed to be accompanied so that the member of staff assigned to me could carry my portable oxygen cylinder – apparently the benefits of the oxygen are negated by the extra weight if you carry it yourself - the rest of them congregated in a corner and spent most of the session gossiping, and I felt like I was back in school again. The physio who conducted the warm up and warm down chairobics spoke to us like we were five years old (I half expected him to say “swing your pants and sing” like the children’s entertainers on the old Saturday morning television programme).

    When I returned home, I felt that I had let myself down and not tried hard enough, but the more I thought about it, the more reluctant I felt to return to the class, and I decided to call it quits.

    I’m glad a lot of you have had more positive experiences, because I can certainly see the benefits of keeping fit, but I think I’ll pass.

  • I sympathise with you as I had a similar experience myself. I was really looking forward to it as had heard how beneficial it was. On the first day chatting to the others found out they were all suffering with COPD, I was the only one with IPF, they were all very nice but only one other person appeared to suffer from shortness of breath which I do quite badly. The physio asked us to hand in our forms which we did, she then asked me to fill in a form for copd patients which I said I could not as I did not suffer with it so could nt say how it affected me, she did nt like that. The physio then explained the first hour would be exercise, the second would be talks on breathing techniques etc, she said to be you won t need to stay for that as it is aimed at copd patients. We were shown the exercises and then just told to do them, most of the others were racing up and down doing everything very easy, no shortness of breath, I was struggling and told her this, she said see how you are next time and walked off. I stayed for the second hour hoping to pick up some useful advice, but they tried for 40mins to get the equipment going without success, so we just had a short talk and went home. I was so upset as the experience to me was not good, no consideration was given to what stage your illness was at and what you were capable of doing.I did not go again, thoroughly disillusioned. I know most people love it.

  • I'm so surprised that they didn't try to adapt the course to help you. I'm not surprised you didn't go again, although it's a real shame.

  • That must have been so horrible, I'm so sorry you went through that. Thank you for sharing though - it's really useful insight.

  • I have done PR three times and it was very helpful and informative, although during the third session I was ill and was taken into hospital for just over a week with pneumonia , but they've told me that when I feel ready to try again I just have to call. I now have a really bad chest infection and need my oxygen a lot, so won't be anytime soon 😏

  • I did a PR course last autumn after 2 years on the waiting list. It was in a leisure centre 10 miles away, but with plenty of parking. I really enjoyed it, felt motivated and cared for. The group started with 14 people but there was a lot of dropping out. The last session there were 7 of us. I felt sorry for the nurse and the young folk who watched over us. It just seemed disrespectful. At the assessment I did the shuttle walk, and again at the last session. I would love to know if I improved, but the nurse was ill that day so I shall never know. If I can go to another course I will jump at the chance. As I am very severe COPD they fixed me up with tele health, so I know I can get instant help should I need it.

  • Did the the course at the end of Nov 2015 into Jan 2016 and I must admit he made me more aware of what can be done, the types of COPD ( I am Alpha 1) and of course getting your mind around what you can do to improve your lot, then and in the future. Always had been a big keep fit type up to 2000 and since then Golf and playing with Grandchildren. Since 2015 all that has stopped, so the excercises were good news. I suppose my main thoughts are that you must except what you have, and if you want to enjoy life as much as you can be, be positive. Yes there are these professional people available and they will do their earnest to help you, but (there is always a but ha ha ha) it's up to yourself to get your self out of bed, don't feel sorry for yourself and do what you can. I don't and and don't want others moaning and groaning at me about they have this or that it's enough to put you into depression. Enjoy what you have, be alive and enjoy life to the fullest possible. Oh yes, have a nice day

  • Interesting that current guidelines recommend that bronchiectasis patients with breathlessness should have access and be considered for (PR). I was never offered PR in either primary or secondary care and asked the GP myself. So unsure if this is routinely offered to patients with BE.

    Whilst attending a PR course I found the exercise excellent but the talks were so obviously designed for people with COPD. For example there was no emphasis given to mucus clearance. The advice for taking antibiotics was for 7 days and someone new to BE may not be aware of the present guidelines of 14 days.

    I agree with Professor Wilson in his interview with Dr. Stefano Aliberti that you can't just feed BE patients into a PR course tailored for patients with COPD.

    ers-education.org/cmeonline... around 35.57.

    Kind regards

    cx

  • Thanks for that link cofdrop, you're a mine of information! I've never been offered PR either but I'm not sure it would be very useful for me. I sent for the Blf dvd. The only lung problem they mention is COPD but it's quite good for strength & cv exercise.

  • It's very sweet of you to say so Hanne but much of what the knowledge I have gained has been from you.

    I know you, like me, have a concern with regard to cross contamination. I know they say there is no international evidence of cc between one BE patient to another BE patient. They don't say what that evidence is based on, if there is any and following the congress last year 2 of us ended up on IVs shortly afterwards. So I am not convinced. Why do they have single rooms for BE patients in USA I wonder.

    love cx

  • I'm not convinced either! At RBH they're very hot on cc, patients colonised with a bug are nursed in isolation, with full infection control procedures applying to staff & visitors. "No evidence" doesn't actually mean much does it ;)

    Apologies, Bethany, for going off-topic here.

  • I don't think it is off topic H, as you have a group of folks with respiratory issues together, not always knowing at an early stage if they have an infection brewing.

    I did note that the nurses cleaned the oximeter after every patient, which then made me think that is something they never do in hospital.

    cx

  • Good point about the oximeter in hospital. In future I shall ask for it to be cleaned.

  • When I was first diagnosed by the GP he gave me a prescription said you have COPD a year later got a note on my prescription to make a appointment for a lung function test.

    I changed my GP about 3 years ago and the first thing my new GP recommended was a pr course so many tips how to make a bed medication food storing food for when we are not well enough to cook the list is endless

  • Hi Bethany. My consultant recommended PR & referred me for it, but I got a call from a community physio who was off-putting, said there was a long waiting list & it was more for COPD. I said I'd like to do it anyway but never heard back & that's 4-5 years ago!

    Like cofdrop-UK & most bronchs, I manage my condition unaided. My GP said bronch is a grey area and unlike COPD, asthma or CF, there's "no funding" for specialist nurses etc. The same goes for PF & other uncommon lung conditions. The nhs has certainly changed, it's not about "need" anymore. If you don't fit into one of the more common categories with specific funding - tough! Moan moan 😕

  • How rude, not to get back to you. I know what you mean Hanne, it's so frustrating.

  • Hi I have asthma got refused PR locally but got it at the Brompton who I am under. It the best thing really gave me a lot of advice and was able to do lots more by end of course.

  • Hi Bethany, a bit late I'm afraid.

    I've been to one PR and loved all aspects of it - the exercises, the education sessions, the friendships and the fun. That was over two years ago. I've been referred again by consultant and respiratory nurse but I no longer have a car. It's offered in two places each over ½ hour away and there are no direct buses. Taxis would be way too expensive. Can't do it!

    Sue

  • I started with pulmonary rehab 4 years ago, since then I have been fortunate to attend a pulmonary rehab maintenance group. On the odd occasion I have suffered a severe exacerbation I have had to repeat the pulmonary rehab course and then rejoin the maintenance group.

    Within the group we are all friends, some leave, some join but there is a core of us that help and assist those that need it, particularly newcomers. The age of the group range from 83 to late 40's and all ranges of COPD stages. The nursing/ physio staff beside taking the training session also help as best they can with medical problems, contact GP surgeries or advise on letters received from hospital consultants we struggle to understand.

    All the members agree that without our maintenance group we would be struggling, hospitalised or worse. This arrangement is financed by Solent Health NHS Trust, who would agree with me is cost effective taking in account of the cost of extra GP's visits and hospital stays.

    Rehab is the best news ever for all.

    Retired.

  • I had to ask my GP to refer me for PR, and he didn't know how to do it, just knew it was good for people with a moderate COPD diagnosis like me. It took several months to get on the course, and I only got on as soon as I did because I got a cancellation. The course leaders were very encouraging and professional, and included physiotherapists. They motivated me into starting my singing for lung health group before the weeks were over.

    The course itself helped me identify that I was hyperventilating on exercise, which was why I had stopped doing physical things and got deconditioned. I learned how to be more active without overbreathing, and have steadily increased my physical activity and health since starting and after finishing the course. When I started, I used to manage about 2500 steps a day. Now I regularly manage 10,000 steps a day. Thanks, PR.

  • I attended PR in 2011 and really enjoyed it and got benefit from greater understanding and increased mobility and motivation. I have been exercise intolerant for over 10 years as my sats drop dramatically on exercise, but this 8 week course really helped me. At the time I was moderate with a FEV1 of approx 41%. The course was held in Coalville working mens club and involved a 20 mile round journey, but you could park directly outside the building, so was quite convenient.

    In September 2016 my consultant suggested I would bebnefit from a further course and I agreed to do this. At the time my FEV1 was down to 33% and I was struggling and lacking motivation. However before I could get an appointment in March 2017, my health regressed further and I was now officially classed as severe. During the winter I struggled with a seemingly never-ending hacking cough and chest infection, lost the support of my GP who withdrew back-up meds, and had to battle with the cash starved NHS bed shortage as my lovely 92 year old dad battled lung cancer. In the end he was discharged against my agreement, with a prognosis of "months" rather than years and died tragically just 6 days later. The hospital had assured me his medical care would be picked up immediately by his doctor. In the event I got a phone call from his GP 2 days after he had died to apologise and say "sorry, but I didn't know he had been discharged". Since then I have been under the Black Dog.

    The booking details for the PR course showed the venue would now be at Leicester Glenfield hospital which involves a 50 mile round trip twice a week and difficulties in parking close to the respiratory dept which I struggle to get to twice a year for my O2 referrals, and I just couldn't face it so I cancelled it to allow someone else to benefit from the place. I'm spending most of my time at the moment trying to unravel my dads affairs for the probate application, and hoping the improving weather will see me back at the lakeside drowning some maggots.

    I would reconsider PR if it was more convenient but Glenfiled twice a week is just too much, but I would thoroughly recommend it for those who are more mobile and want to stay that way.

  • I'm so sorry to hear about your dad, and that you've had such an awful time getting care and treatment for both of you.

    Where they decide to hold the pulmonary rehab courses can be a huge problem for a lot of people. Of course, it can be very difficult for the respiratory teams to find a perfect location, particularly when they cover such a huge area. That doesn't help you when you have to face a 50 mile round trip though.

  • I have attended PR twice in the last 6 years and began my 3rd course a couple of weeks ago.

    Session 3 was last Monday April 3rd. As I left I started a nose bleed which resulted in my admittance to Exeter for three days where they struggled to stop the bleeding. I am on a host of meds including blood thinners rivaroxaban. My BP was 240 over something!!!! I am out of Hospital now having lost a lot of blood and feel very weak and I have become anemic. I have meds for high BP but have been struggling in recent months due to infections and so on. The sessions were 2 minute long exercises and I think it was too much for one uninterrupted hour. Our BP's ought to be considered far more seriously in the preassessment session than was mine. I waited 12 months for this place and had been looking forward to it. So beware anyone with High Blood Pressure!

  • I have also not been offered PR when i get over this infection i am going to ask.Ihave a very good resperitory nurse who i have seen over the last few years but have never seen a consultant.

  • I attended PR twice when I was first diagnosed 4 years ago. I found it enjoyable and really helpful, not just the exercise but the advice on how to manage my problems (COPD and Bronchiectasis) After that I had an introductory 12 weeks free at my local Gym. I now go to the Gym 3 times most weeks and am almost symptom free. I am 68 years of ago which shows, you are never too old.

    Pauline

  • I did the full course one and just the exercise component a further twice.

    I have mixed feelings regarding the course.

    Learning the exercises was really helpful and I still continue to use them. Absolutely great to learn them so totally worthwhile. Unfortunately I have severe asthma so my needs were always different to the rest of the group. I was also much younger and as such I was made to feel uncomfortable by some other group members, even to the point another group member shouted at me for parking in a disable bay. I do have a blue badge!

    The education sessions I felt were far far too basic. Come on everyone should already have a full knowledge as to their condition and what the various were for and how they work. That really should not be part of a course. It would be much more use to go at a more in-depth level and tips to make life easier. Also when it comes to benefits etc please include those of us pre-retirement age. I was horrified to be told all about aid for those 55+ but not available if you are younger but "you can come on a carers walk" - I wish I could do it.

    My condition totally fluctuates so it's a case of trying to keep doing a little when I can and it's safe to do so.

    Would I recommend the course to others. Maybe. If it's an old person with COPD or similar definitely. A younger person with a variable condition I'd say try and learn the physical exercises definitely.

  • I'm on my last week of a 6 week course on pulmonary rehab, it's been the best thing ever!! The exercises are good (not too strenuous) and the after talks have been beneficial. Sadly it's the last course in my area, funding has been stopped after nine years.

  • I'm glad you've gotten so much out of it but that's such a shame about the funding.

  • I as lucky to go to 1 of the early ones had to catch 2 buses to get ther but breathing was esier then loved it must check where the book they gave me has gone. Would like to go again but like everything funding has stopped

  • I have had copd for about 8 yrs and yes indeed makes it hard to. Breathe!! Prayers sent I also have stage 4 lung cancer and at 82 pounds now! Don't give up the fight to live but ur right hard to be a caregiver and take care of their needs daily! As I do for my husband as a stroke victim ! It's double hard because I'm down so sick myself! I ask myself how much time I have ! I had 6 months to live with stage 4 lung cancer! Been her almost 4 yrs! Good luck take care!! Stay positive !

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