As a patient advocate I often need to collect information on local respiratory services which are available to patients. This is to help gather a picture of services around the U.K.
It would be helpful if people can let me know two things please.
1. Have you completed a PR course online ? What did you think of it ?
2. Does your local service off er a regular PR maintenance exercise class on line ? If it does, then do you take part? If it doesn’t, then would you find one helpful do you think?
Thanks for your help with this.
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PaulineHM
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Hello Pauline. Yes I took part in a Pulmonary Rehabilitation Course a few years ago. It was twice a week for six weeks and I found it extremely helpful. The one I attended was purely for sufferers of bronchiectasis which was particularly useful as it educated us all of the difference between COPD and bronchiectasis. I would think an online session could be useful but I enjoyed the hands on experience of the practical side of it, being the exercises wih others together with the educational side where questions were encouraged. I have asked my respiratory nurse if I could attend another one which would help to reinforce what I previously learned.
So pleased that you found it helpful.. Those who complete the course usually find they have benefitted by attending. Some health care professionals who work hard on our behalf support that we attend a PR course once a year. I think that would be really helpful because new techniques come into being and new medication too.
Are you able to attend a local respiratory exercise class if there is nothing online?
Ho, jumping in here, you can ask your main health care professional to be assessed for a Pulmonary Rehabilitation course. There is usually a criteria to be reached before you can attend, although there is no harm in asking is there?
How sad that there is no local course ? Have you asked the respiratory health care professionals in your local team why there isn’t a course available for you?
Hi Pauline, I have bronchiectasis and aspergillosis and attended a course at my local hospital just before lockdown. It was so helpful and I've been lucky enough to start another one a couple of weeks ago with the same physio team. Can't praise them highly enough and feel very lucky to be offered the chance again. I don't think there is an online course in my area but I know it would not be something I would want to do. Despite having to get two buses there and two buses back home again I don't think you can beat the human interaction which for me is a huge part of it.
Hey, that is brilliant that you have been offered a second course so soon after the first one. I agree that the social side and support from professionals is a big part of the course, however I find an online maintenance exercise course once a week helps to keep me going! One hour and it is done rather than driving 10 miles, parking, taking the course and then returning home.
I completed a six week course at home during covid following a book given by respiratory nurse and followed up on phone fortnightly. I completed but did not motivate me and felt i missed out on support of others. Found it very difficult to maintain exercises afterwards
Yes, I agree completing the course at home for the first time isn’t quite the same as being in the same room as others and the professionals.
Are there any local respiratory exercise groups that you could attend to help to keep you going ? Or ask the respiratory team if they can provide a class online ?
my husband waited 2.5 year for a pulmonary rehab course. Not online. He’s just finished a course held at a local gym. It has been brilliant in improving things. Now he’s offered follow up 12 week course and, after that 3 months full gym membership. Enormously beneficial physically and mentally. Not sure online course would help much. Being with others in the same boat helped and the physical encouragement of the team. He was so anxious - he felt safe in their hands. We’re in Derbyshire.
Wow,, so pleased that your husband benefited by attending the course and is now being supported in being able to continue at the gym. It can be really tough without the support can’t it.
I did my second full course online during the pandemic and have continued with the maintenance class online… which is a boon for me.
Hi, who looks after your care ? You could ask your health care professional to refer you to the local respiratory team for an assessment for the Pulmonary Rehabilitation course ?
I completed pr in person and it has made such a difference. I know an online course would not have had any where near such a life saving difference. (The lung tx is now on hold) I don't know anything about a maintenance class, if it was in person I might be interested, as long as it didn't clash with my yoga, pilates or seated zumba.
Hi, sounds like you are able to keep good and fit ! What a shining example you are ?
I did my second PR course online during lockdown which was better than nothing. It does make a good difference doesn’t it ? I enjoy the bodywork, yoga, PR exercise, and am on the list for Active balance!
Keep well.
Hi Pauline I attended one in person a few years ago was very helpful pleased I attended.
I also completed one online in April of this year That was also very helpful I did miss the company of others like when you attend in person however I still managed to do all the tasks and felt a lot better for it I would recommend it to everyone who gets the offer.
Hi, yes it isn’t quite the same when we aren’t in the room with everyone is it ? So pleased it helped you feel better and hope you are able to keep some of the exercises and education up! Keep well.
I’m starting an online PR course next week. It’s at least a 3 hour round trip to the hospital so it being online is perfect for me. It means I wouldn’t miss too much work either.
morning. I was born in 1935 with PCD, didn’t get proper care until looked 3 years ago on line and paid to see interests of all respiratory consultants in area. Since then I have Nebuliser, spirometer etc. Have been offered courses at local hospital but because of covid, and as I’m on almost constant antibiotics, it’s too big risk. This is not response to your specific enquiry but think it’s important to make known how people with unusual conditions are let down. I have and pay a private respiratory physio who comes twice weekly, makes big difference. Best regards, Jean x
PS. my mother lived until she was 111, think I have some of her strong genes.
Hi, thanks for your reply and oh my what a rough road you must have been down. Good for you that you have your own arrangements for aiming t9 keep as well as you can.
Having a less known condition must be a constant frustration for you and I admire your strength (and genes ! ) My feeling is though that PR face to face or online is a real post code lottery for many people, with common or less common conditions. Lots of people are working hard to redress this imbalance.
I've got bronchiectasis and have never been offered a course. My consultant is aware that i go to the gym regularly so perhaps he thinks that's sufficient.
Hi, great that you can get to the gym to keep as fit as you can, that will help, although PR is only 50% of a PR course. The other 50% of a course is education based, medication, managing breathlessness, nutrition, sputum management, mental health etc. There is a criteria to be met before referral, could you ask your doctor what that is ?
I was in a similar position at the start, too fit when diagnosed, it took another 7 years to get onto a course, and another 10 years before I attended the second one!
I’m a newbie to all this really. I have had Asthma since childhood but mild. I have RA which affected my lungs causing nodules & ground glass in 2017. On final monitoring CT after being in hospital twice with Pneumonia it showed Bronchiectasis. That was 2020 before lockdown. My Rheumatologist has recently done CT due to breathlessness from potential long covid which showed Atelectasis. I haven’t been seen by Respiratory since I was in hospital in 2019 so had no input on these conditions. I hadn’t heard of Pulmonary Rehabilitation till I joined this group & still don’t know what it is but guessing physio. In answer to your question no I havnt had any. X
Hello, ok Pulmonary Rehabilitation is a 6-8 weeks course, with participants attending twice a week. The content is usually 50% education, inc. nutrition, managing breathlessness, medication and it’s uses, sputum management and relaxation. 50% is graded exercise. Some people who attend are in wheelchairs so we start from where we are. You can request an assessment to attend a PR course, from your GP, Respiratory team or Consultant.
Thanks for your response. It sounds useful. I really could do with some input from somewhere but I have had a letter from my consultant who has seen my CT results even though he didn’t request it to be done & has asked for more breathing tests to compare with one from 2017 when I was first referred. I havnt seen my GP for a long time but may ask my Respiratory consultant once I’ve had the test. Thanks for your help much appreciated.
I am still waiting to hear about one in my area. I live in Denbigh, North Wales. I really would like to attend one as l think it would be very beneficial to me.
Hi falcon68, I llive in Conwy. I had a couple of respiratory physio sessions at Llandudno Hospital and have been referred upwards for Pulmonary Rehab which they told me was held at Glan Clwyd HosHospital. She warned me it will be a LONG wait. I have bad asthma with Bronchiectasis on top, GP wants me to have my own home nebuliser but had no clue as to how to go about it.
hello, I have a Nebuliser provided by Hospital where see Respiratory Consultant. I think Your Gp will need to refer you, don’t think Gps can provide them, but may be wrong! I also bought a travel Nebuliser, but it doesn’t do as good job of my NHS Philips Innospire Deluxe. Hope you can get onto twice daily Nebulising, takes nearly hour each time, then have to sterlise mask, pot etc, good luck, Jean x
Hi, if you meet the criteria to attend a course then they should let you know. Maybe a little pester power would help ? Can you speak to someone about it ?
Hi falcon you live in the next county to me Flintshire ,i have been on PR corse twice in five years ,my consultant at Glan Clwyd hospital refered me to a class just a mile away from where i live Holywell ,the next class i attended wawas seven mile away in conahs quay seven mile away ,if you have a consultant at GlanClwyd hospital or any hospital ask them for referal
Hi Pauline, I was on the list for a couple of years to do PR but covid got in the way. I was told I could do an online course as I am a full time carer for my husband. I finally had a call from the hospital in July inviting me to attend for PR. I explained my situation and asked if I could do it online but was told it isn’t done ☹️ I’m just doing my own exercises at home as and when. I could really do with some regular support and input from the resp team, it’s too easy to not bother!
Hi, what a shame they don’t have an online course for you. Do keep asking them won’t you? And the point you make about being a cared and not able to easily leave the house, preferring online is a really important one! I will bear that in mind when I meet with local service providers.
If you have COPD you could ask about the my mhealth App, I got mine from the local respiratory team and through lock down I did find it helpful. It is a self management app for people with COPD. It feels better than nothing.
Hi, yes thank you, I am bowled over by the responses from people on this topic. If you feel you need to attend another PR course do ask to be referred. If we don’t ask we don’t get do we ?
During the lockdowns and ongoing pandemic restrictions my local BreatheEasy organised PR Zoom sessions, working with the local university physio students and their tutor. It worked very well for me. It wasn't the same as the NHS PR I've just attended as there was no measurement of 02 for example and, of course, no preliminary walk test or anything. You could only join if you had previously attended an NHS PR course.
Safety precautions were: permission from your GP; provision of emergency contact number; permission to contact GP; permission for the group leader to phone us at home and / or to phone for medical assistance in an emergency situation.
I found that setting the time aside once a week to exercise with the same group of people was very motivating and the education session and discussion at the end was really good as it was also a way of socialising during a time when we couldn't go out and about to meet friends.
My husband and I also subscribed to a Diabetes UK online course which was similar in content but, of course, the education side was geared towards Diabetes. That course was equally helpful to us both. Again, the important part was making the committment to join the course once a week. Knowing that places were limited and if you dropped out you would have prevented someone else from having the place was a great motivator.
I am not aware of any online PR courses currently running in our area (East Sussex) at the moment but believe they could be extremely useful for those in remote areas who cannot easily access the venue due to transport difficulties. Even travelling three miles by taxi cost me £11 the other day, due to there being no bus available and my husband not being around that day to take me where I needed to go. Therefore, if the venue was not easily accessible to me, I would prefer to join an online course rather than not do PR at all.
What a boon to have the support and availability of such an online group through lockdown. It does sound as though it is very similar to the weekly class which runs online here in Gloucestershire. There are face to face respiratory maintenance exercise class here to and they are well supported.
I am pleased that you found Diabetes U.K. helpful. What a boon these patient organisations are?
It is difficult isn’t it when services are difficult to get to ? I hope you are able to have something online soon.
hi Pauline I was referred for PR at the start of Covid , despite contacting them 3 times now I still haven’t been offered a Course . I have been told Someone would call me back , no one mentioned an online Course either .
Hi, I’ve done it both ways and I found online much more helpful actually. I found the in person course more difficult for several reasons; it was quite a large group and it was hard to get hold of the people running it if you had a question as they were often helping someone else. I also didn’t like exercising in a group - a lot of people don’t, which is why my area is going forward with more online courses. Also I found the talks weren’t that helpful as they were quite basic, very helpful for someone who has just been diagnosed but not so much for others. When I did it online (actually it was mostly on the phone in my area), the professional running the course called us all individually after we’d received the educational material to check we’d understood it and we could ask any questions relevant to us, which I found more helpful. I think a choice between online and in person courses would be good as one size doesn’t fit all.
Hi there, wow that sounds really great provision of services. No wonder you are pleased with online. I agree with the points you make about face to face courses, and with online there aren’t the distractions of others.
In our online maintenance classes everyone has completed at least one PR course and those who attend regularly are very motivated, which is helpful.
I do hope your online service continues and hope it is provided elsewhere for others too.
I think I could benefit from an online course as the place that holds these is very difficult for me to get to without a car. I dont really have anybody looking after my care as the consultant at the hospital discharged me saying there was nothing more he could do, although I have to say he didnt really do anything for me anyway. I dont see a nurse as in my practise they know nothing about bronchiectasis and just kept giving me asthma checks. My ususal gp is on mat leave and the other doctors again know next to nothing about bronch. I am sure I am not on my own in saying that care is down to myself and sadly i have to push for everything I need x
Hi, oooooh goodness me I know exactly what you are describing when you talk about local services not being very helpful and consultants discharging us!
I agree, an online PR or helping you get to a face to face PR course would be likely be very beneficial.
Can you have a word with one of the other GPs about possible referral to a PR course ? I am sure you would find it beneficial.
Hi Alice, you need to request an assessment for PR from either your GP or from your local Respiratory team or Consultant. Some areas require a certain level of respiratory dysfunction before the with refer someone for an assessment.
I was offered a PR course in 2019 soon after I was diagnosed with bronchiectasis. I found it very helpful, both for the exercise and the information. I liked doing it with other people and with nurse and a physio to hand to answer questions. The course was supposed to be 14 weeks, but in fact I only got 12 weeks, having to miss 2 sessions. There was such a demand that they could not fit one in to make up the lost sessions. So far there has been no sign of a revision course, which would be helpful. I am in north Essex.
Yes, what a real shame and hope that the hernia is healing. I have known people who use wheelchairs complete a PR course, so is there perhaps a chance you could do some upper body work whilst seated ?
I have never been offered a PR course by my GP or respiratory team, what is the criteria and how much lung disfunction do you need to have? I find it very difficult to exercise because I have severe rheumatoid disease and bronchiectasis but would be grateful for an online course as I am not very mobile. I used to use a hydrotherapy pool but have been advised it is not suitable for lung issues because of the risk of infections.
Hi, you will need to speak with your GP or one of your respiratory team or consultant about whether or not you meet the criteria for referral to PR.
If it should be that due to your RA that PR wouldn’t suit you then I am sure the physio would be able to give you some guidance for exercise, and other aspects could be shared with you by respiratory team members.
Thank you for your helpful reply. The respiratory team have just given me a booklet on exercise, lung clearance, breathlessness etc. The GP is not at all helpful. But I will be seeing a physio soon regarding my hips so I will ask them. Thanks again for your help.
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