Feedback about pulmonary rehabilitation

• From people who use our services

  “It (pulmonary rehabilitation) has made me feel a lot more positive, and made me realise what I can do. It has changed my life.”
  
  “I have a much better understanding of my disease. I’m much less anxious when I become breathless.”
  
  “I feel more confident, and I can walk much further with less stops.”
  
  “It has been great to meet other people with COPD, I don’t feel so alone now.”
  
  “I am able to cope with my ‘bad days’ much better. I feel much more relaxed and am able to recover from shortness of breath much better.”
  
  “Thanks Team! I love you all for your help in making me do things I never thought I could do and for all the laughs we have had!”

• From other clinicians

  ‘Patients with chronic lung disease who undergo pulmonary rehabilitation find they are able to do more and feel less breathless. Their quality of life improves such that many ask to have repeat sessions due to their success. You have nothing to lose and so much to gain in taking the course!" - Hayley Bradshaw, Respiratory CNS- Luton Community Respiratory Team Lead.

• Service user story: John

  I’m 56, I was working as a maintenance man for a recycling plant until I had an accident at work that messed up my right arm; so, I have not been working for the last ten years.  
  
  I had recently stopped smoking in April after 43 years.  I was quite fit and quite active until I injured my arm.  I had to have several operations over a number of years. it incapacitated me, I felt a bit down and ended up smoking more.  I think I had difficulties with my breathing but because I was active it wasn’t fully announced. Lockdown happened; sitting around doing nothing for two years I ended up smoking more mainly because I was bored which made it worse.  The doctor suggested pulmonary rehabilitation.  I have tried it before, my breathing wasn’t too good at the time, and I didn’t finish the programme.  More recently I started again but ended up in hospital for two weeks and I couldn’t attend.  Then I restarted again, I managed to get to the end and complete it.  
  

  Physical Challenges 

  Breathlessness prevented me from doing most things, I couldn’t walk upstairs, stand to make a cup of tea at times, I couldn't make food it was too much like hard work, I couldn’t even eat food sometimes that got me breathless.  
  The fact that I couldn’t do anything for myself and exercise on my own is boring.  I was motivated by the fact there was going to be other people at the programme, that spurred me on to do it; it got me out of the house which I hadn’t done for a couple of years.  

  Concerns and Doubts 

  I think one of the things that puts doubt is ‘am I worse then I think I am?”  I couldn’t convince myself I am not too bad and by doing this course I am going to have to face how bad I really am, but you have to get past that and think well and most people need to know what is wrong with them; that they are not as bad as they really are.  
  

  Distance of Venue 

  If the distance had been any further, I may not have done it because a lot of times I had to get taxi and that cost money, getting taxi there and back, it was a fiver each way which was not so bad, if the cost had been anymore it might have been prohibited.  
  

  Now

  Well, if nothing else it has enabled me to some kind of fitness each day, I have a scooter and use to take my dogs out, now I get off the scooter and walk around a little bit which I was not doing before.  It showed me I can improve my health even though it might be slightly at least I can improve it by doing these things.  The programme has given me an insight into it. 
  

  Advice 

  I would say give it a go because it can’t do anything but help.  It can’t make you worse, it can only improve your health, your fitness and take away some of the worry about not been able to breath, how to deal with breathlessness through the education. 
  Seven weeks may seem like a long time but in fact at the end I wanted it to be longer.  The staff were knowledgeable and helpful and the patients in the group were very good.  

• Service user story: Ken

  Ken is 76, has now retired he was a construction worker. 

  How it started

  I was at work and felt very ill.  I was unable to do anything and thought it was a chest infection or flu.  The site nurse sent me to the hospital.  I was diagnosed with COPD.  I had smoked cheap cigarettes and they had harmed me.  COPD prevented me from doing everything. All the things I did do including gardening, painting and decorating, I was unable to do.   Now my wife had to do everything for me. I was having a lot of trouble walking up the stairs. I was becoming out of breath.  Even waking up in the middle of the night to go to the toilet I became out of breath.  I would have to sit on the side of the bed to catch my breath and calm down. This was happening daily.  I felt I was becoming worse and worse.

  How I felt

  I wanted to get fitter and get back to normal. I knew I wasn’t going to get back to normal.  I was a loner and initially it took me a long time to start the programme. I was shy and when I saw the setup at Peter Newton Pavilion. I walked out when I saw all the patients in a group setting. I thought it was not for me and never went back.  The cost of parking also put me off. 

  Then...

  I went to the doctor because I was not feeling too good.  The doctor referred me for Pulmonary Rehabilitation, and I went back to the same pavilion.  This time I found it interactive and helpful.  I got to know all the people in the group and was happy.  It built my confidence and educated me how to best mange my lung condition.   In the past I would look at the stairs and think about climbing them that would frighten me; I would get anxious and out of breath.  Sometimes I was unable to bend down to pick up something too.  I was having panic attacks and did not know how to control them until I attended rehabilitation.  The team taught me breathing techniques, what positions to sit in etc.  Pulmonary Rehabilitation helped me so much, I wanted to share my story with other patients.  I believe if I can do it then anyone with a lung condition can do it and enjoy it at the same time.  I want to share my experience. 

  The Team

  The team were absolutely fantastic. I didn’t want to leave. I felt the programme wasn’t long enough.  The team were helpful and gave me instructions on what to do and how to do the exercises.  I have been back nine times to complete the programme.  The team helped me build my confidence, I was educated about my condition and how to best manage it.  Using my own experience and how I have benefitted from it I am able to relate to other patients and share my lived-in experience to encourage others.

  At the moment due to my arthritis, I cannot do much.  I gave up smoking, which was the best thing. I was smoking forty a day and the damage had already been done.  It took me a long time to be less breathless.  I had a blood transfusion and then I could do anything.  I was not scared of walking upstairs or run upstairs.  Pulmonary rehabilitation helped me so much, the staff were kind and funny.

  I have mentally and physically benefited from the programme so much and I can face challenges and manage them. 

  I would advise and encourage everyone who is or has been diagnosed with a lung condition to attend. It is a brilliant programme.  It can be frightening at the beginning, but you can get over that. 

  The whole group had a laugh and joke once we got to know each other.  When I first started the programme, I would become out of breath.  When I left the programme, I was walking so much better and further.  I would love to go back and do it all over again.  The clinical team are doing such a fantastic job, they put you at ease, they will give you individual care at each session and ensure you as a person are ok. 

  My advice is you have got to do it.  The group has motivated and encouraged me to exercise.