To celebrate PR awareness week this year, the PRSAS team has looked at the process of a PR programme, from the initial referral until the final assessment and discharge. We had the privilege of speaking with Michelle, from Imperial College Healthcare PR Service, and two of their patients who have recently completed one of their PR programmes, getting to hear their experience.
Starting from the beginning, when a patient has been referred to you, when they can expect to hear from you?
Michelle: Once somebody is referred, we will aim to call them within 2 – 4 weeks, and we will go through any questions the patients may have – we are aware that people referring don’t always have the time for that!
The sorts of questions that might be asked are:
- What is the location?
- How long does this take?
- What is the best way for us to get there?
As well as any individualised concerns they might have about their health condition and being a part of a PR programme.
So after that initial phone call, a patient will have an assessment with one of your clinicians – what does this look like?
The assessment is from a holistic perspective, as we are part of a wider integrated respiratory service. So, we ask them some questions about their medical history, their conditions, things like that, from here we will answer any questions they have.
After that, we will talk them through the programme and show them the site if possible, as some of our assessments are held in the actual venue, which can be a great way to showcase PR prior to their first session and reduce some of those nerves.
They can then be expected to do two walking tests, which is explained beforehand, once we have done the exercise testing, we will go onto the questionnaire.
The patient is then ready for pulmonary rehab!
Angela and Marielle - how did you feel during the initial assessment?
Angela: The physiotherapist was really nice and made me feel very comfortable, so I didn’t feel worried or anxious during the assessment. I saw the equipment and at the gym and thought ‘wow, I’ve never been to the gym before’ but thought I would try it anyway.
Marielle: I don’t know much about medicine and doctors, so I didn’t know what it was but if I get referred to someone who can help me, I am grateful and just see what it is. I felt very comfortable during the assessment, and I had the most wonderful time.
Sometimes the thought of an assessment can be overwhelming – if during the initial exercise testing, a patient starts to feel breathless or uncomfortable, how would you accommodate them?
So, we go through all of the safety questions prior to exercise testing, and all of our staff who take the assessment is always medically trained. We also work closely with the GP consultant, so we can talk to them and the patient and make sure they feel as safe and as comfortable as possible.
We let them know to bring water, inhalers or any other medications they may need. For example, if they have diabetes, we will have talked to them on the phone and made sure they bring anything for their sugar, make sure they have had a good light meal and are wearing comfortable clothing. We have a direct mobile line for the pulmonary rehabilitation team, which means the patient can always call us if they don’t feel well prior or are having any side effects post assessment.
How do you prepare a patient for their first PR class?
Prior to the first session we will give them a breakdown of the topics discussed in the education aspect, and what the classes themselves will entail. They will have letters and booklets to read, and I will signpost them to the Asthma and Lung resources, which are great to explain a little more about PR in general.
We explain that the exercise will be individually prescribed and progressed so in the first session this will happen with one of our clinicians.
Angela and Marielle - what were your expectations going into the first session?
Angela: I don’t really remember what I was expecting, but waiting outside the room to start the class, I saw other people there and we would all talk which was really nice! When I walked in and saw the equipment, I started to think ‘oh I’m not sure about this’, but by the end of that first class I felt much better. The people running the course were so nice, I felt really looked after, they were constantly coming around checking what you were doing, if you were okay, and they were very encouraging, which was brilliant.
I also liked that they didn’t pressure you at all to do anything you didn’t feel comfortable doing, I tried the treadmill and felt it wasn’t for me, so I didn’t have to use it again, instead, they provided me with other exercises that gave the same effect.
Moving on to the second phase, Michelle will talk us through the ongoing PR classes, and we also get some first-hand insight from Angela and Marielle on the patient experience during these classes.
Angela and Marielle thoroughly enjoyed the ongoing sessions in their PR programmes with Imperial College Healthcare PR Service.
Angela: I found them great! They had everything individualized, not like a normal gym where you just walk in and get on the equipment, you felt looked after the whole time. The weights I found really hard, but they gave you lighter ones to progress with as time went on. Everybody was using the same equipment, but everyone had different needs, one or more people were using oxygen, so they tailored each person’s exercises for them.
During the education session they used slides to show you and then had printed sheets you could take home. This was very good because you listen, you find it interesting and then you forget but because we could take the fact sheets home with us, I have been able to use them, and you can read at your own leisure.
Marielle: Really good! A lot of it really depends on the day, if I am well the exercise is easier – if I am tired/ill then I find it harder. I was very fit before I had COVID, I always went to gym twice a week, so I knew what exercises I wanted to do and they let me do those within my programme,
I am very avoidant with my health so I wouldn’t know what to do to make myself feel better, so it was very useful to have someone to tell me things I need to know.
Joining a PR programme can seem a little daunting, was there anything in particular you struggled with and how did you work through this with the programme?
Marielle: I get very dizzy, so I did struggle with the exercises and walking to begin with, but they were very professional and very kind. When I went onto the steps, they put the chair down at the bottom so I could sit down easily, and when I went on the treadmill, they moved the chair over for me so I could sit down easily if I needed to. They always looked out for me and made me feel very comfortable.
As recent patients in a PR programme, what is your perspective of the social aspect of a PR class?
Angela: It was really nice, I don’t know anybody else with a lung condition, so this was nice to meet other people with lung conditions and talk to them. The people were every nice, different each time because people were starting and finishing at different times but some people I was with the whole time. It was nice to chat outside together while we were waiting to go in
Since I’ve finished, I’ve been doing exercises on my own but it’s much nicer to do it with other people. One lady was finishing before me, and before she left, she said “I’m really going to miss coming here and doing this together.”
Marielle: At the beginning I was a little shy, I spoke to the clinicians but not to the other people, but when you come back the second time and sit down you do start talking to people and its nice!
Michelle, have you seen people build a community within these classes?
Introducing them to the group is a part of their first class as well, as that social aspect is really important. We will have a lot of patients who will come back year after year after year.
Building that rapport is really important, we have multiple groups of patients who would come back together after meeting at their first session, and who still meet monthly for coffee, and who have joined a gym together to continue doing their exercises.
Within that group, it’s been really lovely to see, that is there is someone living alone, or less able, they will have actually gone and picked them up, or brought them over food, and gone to see how they are doing – it’s all about building up that social network.
One of our education topics, is ‘what to do after rehab’, not just exercise, but open age and social aspects. So, we will bring it up in the class they will all start talking together and we suggest they exchange numbers if they would like to, and we really encourage them to keep up that network outside.
One of the fantastic things about PR is that it is so individualised, and everyone’s goals are different – Michelle, what are some sorts of goals you see people having?
Michelle: As pulmonary rehabilitation is so individualised, it differs from patient to patient, so we have had people who want to walk to the shops, or start going to the theatre again, as well as people who just want to feel better. It is all about adaptability to see what is important to the patient and how they can have it. We have also seen people who just want to know more about their disease and what they actually have and how to manage it – and that is when the education aspect is so important.
Overall, I think it is people who just want to return to having a better quality of life to be honest.
Finally, Michelle will talk us through the final assessment and Angela and Marielle discuss the impact pulmonary rehabilitation has had on them since finishing the programme a few weeks ago.
Finishing up the PR programme - what can a patient expect in that final assessment?
During that final assessment, they will do another walking test, another questionnaire and some strength testing and then they finish off the class!
We will then have a follow-up phone call with the patient after the class, so we have time to look at the outcome from rehabilitation, taking the time to compare the strength/exercise testing and the questionnaire.
Angela and Marielle - what differences did it make to your life?
Angela: I have continued doing things like the breathing exercises, I find these really helpful as I didn’t know these before! Because I have the printed sheets, I got to talk home from the PR programme I can refer back to them when I want them.
Marielle: My breathing is a lot better; I am able to keep doing the breathing and stretching exercises. I would struggle if I would talk too much or walk too long, I would get really out of breath, but I always feel better the next day after the PR programme – my body always felt better!
Michelle - do you have anything else you might want to tell patients who have been referred to pulmonary rehabilitation and learning about what it is?
We know that the work exercise scares people the work group scares people, but its knowing that you are not alone. One of the biggest bits of feedback we get from patients is how open and honest you are able to be about your condition and how you feel. You can talk about your symptoms without worrying you are going to upset someone and being able to have those difficult conversations but also have a laugh about it. Pulmonary rehabilitation is all about opening that door, so people feel comfortable.
We really appreciate you, Angela and Marielle, sharing your personal experience, is there anything else you’d like to add?
Angela: Makes you realise you can do more than you think you can do! It’s not as hard at the end as the beginning, they also have referred me to some other programmes that they think would be beneficial!
Marielle: It was very good, and it helped me because it is exercise, something to look forward to going to, gave me people to talk to and I really enjoyed it! The whole lot, I really liked to exercise again! I’d love to come again.
Thank-you to Angela and Marielle, for sharing their perspectives of a PR programme, and being so open with their experience! And thank-you to Michelle for being a part of this blog, and congratulations to her team on their recent PRSAS accreditation!
To start your accreditation journey, visit the PRSAS website or reach out to our team on pulmrehab@rcp.ac.uk