NHS please invest in this!

[mikecom1]

Back in Feb 2020 I attended a pulmonary rehabilitation course which was excellent, it was due to be followed up by a pulse course in the gym. Covid struck and it was cancelled which was a shame because for time first time in years I felt gym ready. I rung my GP just before Xmas asking to go through the cycle again only to be told there is a 3 year waiting list for the Pulmonary course?? They offered me just the pulse course Which I attended but I'm right back where I started and nowhere near ready. NHS if something is doing some good for people with our condition doesn't it make sense to invest in it?

[CDPO16]

From my understanding when I attended a pulmonary rehab course 6 years ago it was intended that I should continue with the exercise routine I had undertaken there on my own at home to maintain it. I am not surprised that there is a long waiting list now given that courses were stopped during the pandemic. I had a 6 month wait pre pandemic.

[mikecom1 in reply to CDPO16]

Hi yes I did actually carry on as my wife and daughter were home but when they went back to their work my exercise regime fell away. You might find this difficult to understand, I'm not any good at lone exercise; apart from walking my dog who's very old and doesn't go far. Personally I think the NHS has dropped the ball here as putting on extra sessions perhaps in community halls would save them £££ in the long run. I help to run a charity and would certainly let them have a hall to do these classes.

[CDPO16 in reply to mikecom1]

I do understand that it is difficult to maintain motivation at times, I have to push myself some days. I don't disagree that extra classes would be helpful but I do wonder if there is sufficient staff to provide these.

[Tykelady in reply to CDPO16]

Like Mike I attended a pulmonary rehab course back in 2016 and followed up with a weekly exercise class at our local leisure centre. However, the freelance trainer who was chosen and well grounded in COPD exercise was replaced so that the Leisure centre could use one of their own staff already on the payroll. It somehow seemed to lose the closeness of our little group which closed when Covid arrived. There was a small cost which included tea and biscuits and a gossip afterwards. My oxygen nurse suggested another pulmonary rehab course on Tuesday but I know that I would be unable to do what I did previously

[CDPO16 in reply to Tykelady]

Yes, in spite of trying to maintain some level of exercise at home I could no longer do some of the exercises at a rehab course. Sometimes we just have to settle for what we can still do.

[Hidden in reply to mikecom1]

Hi Mike I have this problem aswell no disipline lol, I feel I have been lazy over the past couple years not being allowed out ect now im actually not able to get out, anyway I had an offer from hospital where I I did PR in 2017. I am doing the course online its been eight weeks its takes longer for some reason, now I am being called back to be discharged I do feel like I have not done enough but theres no way I can be the same in 2017 so I am dissapointed never mind, its a case of keep walking at least, so I do feel for you, I am not really lazy lol

😇😀😉

[mikecom1 in reply to Hidden]

Hi although my charity run a community hub given the replies I have had I'm thinking of talking to my local Health provider to find out how we go about running one ourselves or even enlist a physio to do it privately. Typical of the NHS find something that works well saves them money in healthcare costs and then queue people to get on thee course.

[Hidden in reply to mikecom1]

That sounds like a good idea, good luck just keep on keeping on thats what I say.

👍😇

[BerryHead in reply to mikecom1]

I have just moved back to England after living in Brittany for 18 years I have to say the French Health Care is second to none. I have had C.O.P.D. now for 15/16 years. I was admitted to hospital in January 2018 in Intensive care for 5 days and another 3 days on a ward for 2 persons with private Bathroom. and spent another 2 weeks in August2018 in Hospital .It was then my Lovely Specialist Dr Irene Frachon ( check her out on youtube ) asked me if I would like go to a live in Clinic for Respiratory and rehabilitation in July2019 I went to the clinic for a 4 week course but stayed for 6 as I caught a virus from another patient, We all had a private room with an en suite. 3 meals a day nurse and specialist on hand Gym 3 time a day relaxation and breathing exercises in an adjoining room and lovely walks in the forest and surrounding gardens. The true reason that I am writing this, is it was wonderful experience and I made many friends there even though I was the only English person there.The health system in France is that the French Goverment pay over half and your private health cover tops it up which all people in France have to provide. No charges for prescriptions.This is what England should follow, before the N.H.S.gets privatised.

[Damon1864 Volunteer]

It would make sense to invest in it, but do they have the resources to. It's a pity there isn't more classes I was also told to continue doing the exercises at home. Three year is a long time to wait so you might be better off continuing at home. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

[mikecom1 in reply to Damon1864]

Thanks for your reply, for me I always find something else better to do that's why I actually had to get a little rancid with my GP to get the follow up; pulse gym course I have now started.

[Oshgosh in reply to mikecom1]

Excellent.

[Hidden]

Come on Mike! Get up off the sofa and take responsibility for your own well being. There are many of us on this forum who have a heavy daily burden of lung clearance, medication, nebulising and exercise. I doubt if any of us are 'good at exercising alone' but we know that we have to take responsibility for ourselves to stay well and lead good lives. I was diagnosed with bronchiectasis in 1956 and was lucky enough to find a specialist who put me through what is today's equivalent of pulmonary rehab. I have lived my life according to what I was taught. Nobody held my hand to help me do it. You have been given a valuable resource which you can now use to improve your quality of life..You don't need to be nannied through it and there are many who haven't yet had the chance to learn these life enhancing tecniques. I know this may sound harsh but as someone who has had to keep myself alive and well for 71 years I feel entitled to tell it like it is.There are lots of great folks on here who will support you, as they do each other when you are treading the path to managing your condition and feeling much better. You never know, you may enjoy it.

[mikecom1 in reply to Hidden]

Well although I'm retired...eventually I now chair a charity which helps vulnerable community groups it does take up a heck of a lot of my time. In a competitive or group setting I can and will exercise with the group but alone I'm too busy. I actually had to almost bribe my GP to get the statutory follow up to the PRC which is pulse I have now started only because I know I exercise better in a group. As far as self exercise goes I walk my dog and still do lots of chores and DIY . We are thankfully not all the same and I'm certain if you can understand some of the anomalies in society you can understand mine.

[Hidden in reply to mikecom1]

I don't think that you are an anomaly, I just think that you find it hard to get motivated like the rest of us.

[CDPO16 in reply to mikecom1]

I haven't heard of pulse before nor of it being a statutory follow up to pulmonary rehab. After my course I was offered reduced fees to the gym at my local Health Care Centre which has a sports facility in the same building but nothing more.

[mikecom1 in reply to CDPO16]

Hi apparently it was found that a high percentage benefitted from the PRC but a swath of people dropped off exercise over a few weeks. Pulse was introduced as part of the course with, as you say a lower fee for a period of time. To be honest not much of a saving on normal OAP rates at our gym. I knew I would not exercise well at home so as soon as the restrictions were lifted and I was satisfied it was safe for me I applied to go on it. It is now built into each PRC course.

[Greenthorn in reply to Hidden]

Thanks Littlepom. You've given me a welcome kick up the backside!

[Nula2 in reply to Greenthorn]

I too have bronchiectasis and have lost all my get up and go due to worsening health, lockdown and a stressful situation. I have a friend who is always trying to motivate me by telling me I have to take responsibility for my own health. But to hear it from a life long sufferer gave me a 'kick up the backside' too. Thank you👍😊xxx

[Patk1]

Id self refer back to pulmonary rehab x

[Balloo]

Hia I did pulmonary rehab fab .then found a breath Easley group .but moved no trasport wonder if these groups open again .

[Jaybird19]

i was booked for course at local gym after finishing course with nNHS . but had to cancel as classed as vulnerable. my exercises consist of 2 flights of stairs as nowhere to walk except busy road with exhaust fumes

[Bevvy]

Pulmonary rehab courses can vary significantly in different areas. I have attended twice in two difficult areas. First time course was excellent and I found helpful. When I moved in to a new London borough my health deteriorated and I was offered a second PR course. This time although on surface it was same course I didn’t find it anywhere near as helpful/useful.Also in neither course was there an offer of follow up or support once course was finished. Expectation was that we had been given the tools and should continue individually what we had been taught.

[CDPO16 in reply to Bevvy]

I would agree that the standard and quality of course varies a lot around the country. I have read many times how beneficial pulmonary rehab is but I didn't find the course I did very helpful at all and the course leader cut a lot of corners and seemed disinterested. I was offered reduced gym membership after but given how little I achieved at rehab it wasn't helpful.

[Albertisadog1991 in reply to Bevvy]

Touché

[B0xermad]

Hi Mike I attended pulmonary rehab and have continued with a blf breathe easy gym class since over the last 6rs once a week and also a tai chi for wellbeing class and walk my dog round the block daily so it can help a great deal but does cost for the classes.build it slowly at first just a trip as far as you can manage daily it should help to inspire you.

[mikecom1 in reply to B0xermad]

Hi I have always walked my dog daily, but he's old we don't go so far. I also have a home office upstairs and must climb our stairs a dozen times a day. The PRC motivated me gave me more stamina and built the strength in my arms and legs, to be hones the pulse course I'm now on are doing the same exercise so I'm stating from square one and paying.

[Greenthorn]

That's shocking to hear of 3 year waiting list. Really shocking and is an indictment of the squalid way successive governments have served the NHS. Hopefully there are guys on here who might point to a series of exercises and life style changes that will see you actively working to a better level of health. Having said that, I'm now going to read the replies!

[mikecom1 in reply to Greenthorn]

The tories are running down the health service, privatisation by the back door in my view.

[Greenthorn]

And now, having read all the replies i find i am lifted by Littlepom's reply. Yes i have bronchiectasis and was the star performer on a pulmonary rehabilitation course. At the end of it, though everyone acknowkedged the benefit of continuing with the exercises, there was little enthusiasm expressed för continuing with any running regime or daily exercises. That attitude actually made me angry and i spoke out about it in front of everyone. And yet I too have not made time to do thesec exercises. Yes I too am busy with other things, (I'm a hospital volunteer in two London hospitals) but in truth, i'm lazy and blind to the fact that exercise will do me good

Mike, I'm gonna look up the pictures of all the exercises I was advised to do and build up a daily routine with the target of jogging. So thanks for your post AND Littlepom's reply. I've been kicked up the backside! Wishing you well and do stay in touch!

[mikecom1 in reply to Greenthorn]

Hi we are all different and all power to you, I know I can only exercise in a group setting that's why I forced (And yes it was force) my GP to honour the pulse course. Now I'm in the gym I will almost certainly continue

[Karenanne61]

After I completed pr I was given free access to the local gym, where it was held, for 12 weeks at a time. The staff were helpful and friendly. Even knew what to do when I had a very severe laryngeal spasm, to the point of bringing me tea and chocolate biscuits after it was over.🙂 Anyway, I didn't really like the gym so with the pr team's approval I began class exvercises. I now do yoga, pilates and seated zumba. All with well trained teachers who are aware of my health and keep a discrete , watchfulI eye on me. Its not easy but I credit the classes with improving my physical and mental well being. As a bonus I've meet lots of lovely people and a group of us meet on Fridays. It feels good to be in charge of doing something positive. I had to be dragged kicking and screaming to pr, gyms were alien to me but now I love rocking up with my mat and water bottle!😄 Come on Mike, you can do it!

[Hidden]

blf.org.uk/support-for-you/...

Hi Mike. There’s this section on the website which has a downloadable booklet & exercise videos you can follow, specifically for lung conditions. They’re similar to those on a PR course.

I followed the videos a few times and once I was familiar with them was able to do them whilst watching tv, to relieve the boredom. I also have a treadmill and try to do 20mins or so on that, with my kindle propped up.

[JJ_7]

Hi mikecom1. I am really pleased you brought this up because I have approached my GP for a pulrehab course or other similar. I attended a pulrehab course prior to COVID in 2020 and was recently rejected for a second course. I asked to be referred for Social Prescribing which is NHS sponsored. My liaison worker at RUILS (Social Prescribing Body in LBRichmond) has sent me activities and as soon as I mention that I have severe COPD they say I am not suitable. I kept up my exercises for 1 year after my rehab course but my health deteriorated and I live alone. I continue to take strenuous walks but nothing helps in the way the pulrehab did.

I would be interested if you could advise me where to find more information on the Pulse followup. I am interested in possibly hiring a Physio to start a new group at our local church. I jjust don't know where to start .

Anyway, I am so grateful for your post. Thank you.

[mikecom1 in reply to JJ_7]

Hi, from what I can make out unless you DIY you probable don't stand a chance: I head up a charity down here in Devon that manage and own a community use building, I'm going to approach my local health authority to see if the are interested in some space to do this. If not I will find a physio to do some private sessions. We've got the venue just need the instructor

[Lupino]

Hello Mike, Thanks for your post. I’ve mild COPD which often leaves me feeling slightly congested. During the last telephone annual COPD review with the practice pharmacist, I asked if I could be considered for a pul. rehab course. He said I wasn’t eligible for this because of only having mild COPD. My thoughts were that if I started early with such a course I could perhaps prevent further lung problems.

I’ve looked online for any information on pulmonary exercises such as YouTube as well as doing yoga, and having an allotment. 🤗

[bwp91]

Have you looked on the Asthma + website to see if there are exercise classes in your area? Our BE group run two classes a week to encourage people to keep going after rehab. You have to pay of course but it’s worth it as you get the social side as well as encouragement to keep up the exercise. 🕺

[Morrison10]

Interesting. I was born in 1935 with PCD, it’ very rare, wasn’t diagnosed until 1962 when had bronchiectasis. Never had any treatment until found Consultant knowledgable 3 Years ago, found her by looking on line and paying to look at interests etc of all respiratory consultants in Midlands. She gave me Nebuliser, use twice daily. NHS regulations for PCD specify physio, never had it though know patients in London do get it. I pay for twice weekly physio at home, makes big difference. Nebulising followed by postural drainage takes lot of time, but as widow living alone there’s plenty to do to keep me active when feel up to it. I like gardening but now cold wind hurts my lungs, makes me breathless. My physio gave me diagrams of exercises to do to keep mobile. My mother lived until nearly 112, so have her strong genes. Best wishes to everyone, don’t give up fight. Jean x

[mikecom1 in reply to Morrison10]

Yes definitely fight on and all power to you

[Karenanne61]

Just to add to earlier comments, check out community run classes, RVS, local community centres, church halls, schools etc. My teachers teach at all of these. Also gyms have subsidised classes.

[Pudding-30]

Hello I really liked pulmonary rehabe, this was about 4 yrs ago, I to wish more money to go into this. Unbelievable the waiting list time, its just not the same doing the exercises at home, there's a lovely social aspect meeting people who understand, 😊

[Patk1 in reply to Pudding-30]

Self refer to pulmonary rehab x

[Oxygeniser]

I have had both NHS cardiac rehab (in 2017) and pulmonary rehab (in 2019) even though I was diagnosed in 2015) plus attending a couple of exercise groups run by freelance trainers, then Covid came along. The difference between them all was not much, so I have happily been doing my own programme of 2 minute upper body exercises and walking an average of 5,000 steps a day..

I feel better at 78 than any other time of my life despite having to be careful in terms of where I go and what I do. Lockdown was not a problem for me because of this.

The cardiac and pulmonary rehab courses were as good as identical. I was told at the time that referral take-up was c.40%. For courses to be successful they need to be ongoing and easily accessible by public transport (urban centres). One of the pulmonary courses I attended closed because of car parking problems and this led to the class moving to a out-of-town community centre.

I have it mind to try and start a ongoing 2 minute exercise group in the town where I live (Beeston, Nottingham), assuming I can find an affordable venue close to public transport of course and supermarket car parking, which is free and funded by ‘pay-as-you-go voluntary donations open to anyone. I will let you know how I get on.

[Didgeydo]

Yes, I agree having the pulmo exercises certainly helped me and made me feel a little bit stronger, it should be available to all with lung problems. I now am experiencing bad pains in my neck and shoulder, nothing to do with the exercising but I am allergic to all known painkillers and am having pain 24/7 . Have been to see doc but she gave me wrong information as to use Deep Heat on my joints but I am allergic to NSAIDS,Ibroprufen and Aspirin even though all my allergies are on my records the doc told me to use this creme,if I had used it I would have landed in hospital, as the first time I used this creme way back in the late 90's not knowing that I was allergic to aspirin my lungs closed up and landed in hospital who then informed me the ingredients that I was allergic to. If anyone has any ideas of how I can alleviate my pain I would welcome any comments.I am hesitant to go back to my surgery now.