What a day - all six of my class arrived, in various states of health, for rehab session NUMBER TWO - only to be confronted by a new face to take us through, what we thought, was exercise and education class.
That was not to be the case.
We sat in a semi circle, keen and willing to get started, only to be told there was to be no session today or in fact any other day as the couldn’t fulfil our course with the staff to help us.
Errrr…. That was it - Cold, blunt and a bit of a shock to us all.
They said they would in touch, if the course started again, or, if we’re lucky, there may be the opportunity to hop on to one of the other courses running in the area.
I don’t like to moan - for me it was OK, I’ve had to stop working because of my health, but for others with COPD and the like - they’ve taken unaffordable days off work with, fingers crossed, understanding bosses. The pre planning for their 2 days of PR a week must have been a nightmare to wangle.
So - now I’m left with a few sheets of paper on COPD (which is good to read but I don’t have it) and a two exercises to keep me going. Mmmmm!!
I’ve been told there’s a great DVD for keeping fit (which doesn’t feature Davina McCall) produced by BLF. ‘Stay Active - Stay Well’ - So, I’m off to give it a try.
I now appreciate, or at least I hope I do, that we have to put some effort into our own rehab. At the end of the day if you don’t do something yourself there’s not that much help out there. Thank heavens for website like this, people like you and of course a touch of Google!!
Nigel,i would love to say i am shocked because that would indicate that your circumstances where truly unusual,almost unheard of etc,but alas after waiting 7 months for even a chat about a PR course i think in some areas of the NHS it is probably getting near the norm.
I have some very good videos on Bump and Powder skiing and a really old one on beginners hang gliding perhaps combined with your imminent purchase and i am sure others on this site have suitably non x rated videos/cd's we could all get together and start a new rehabilitation class of our own.
Happy googling and the best of luck...........skis
I'll get my mother-in-law to Google Bump and Powder Skiing. Who knows she might even try it !!
How sad it is that the benefit of PR is taken away from people I know from my own experience that although I did find it hard it was a help and I would never have excercised without it sadly since my course finished I have not kept it up But really should try .
I am supposed to be starting next month but heaven knows whether I will get on it as I have heard nothing. Neither have I had any local support from anyone and the GPs don't seem to realise how unwell I am. There's no acknowledgement of the respiratory consultant saying my lung condition is severe or that I probably have pulmonary hypertension. I spent the weekend with chest pains and exhaustion but only got an emergency appointment because I mentioned my mental state matrons, community nurses, what are they?
That's not good - No news. If it's any help - I phoned my consultant and asked for a call back. I had a list of questions ready. It took a few days but I did get a few answers. I also asked him to write to me and my doctor. I then asked for a call back from my GP - told him my news and that he should receive a letter and asked him to act on it. Good luck C:567
We've just heard that ours is changing next week from 1pm thurs to 10am - wot?? Im only getting my breakfast and becoming compos mentis at 10am. Again staff shortages and unavailability at 2pm. But at least they didn't let us come in and just sit listening to info about changing without running a session. They should have phoned you all before hand Nigel, imo. Very inconsiderate and Im so sorry if it turns out you can't have PR after all.
You could write to the trust which was putting on the session and complain. It's very short sighted since doing PR keeps us fit and motivated and so almost certainly saves money for treatment in the long term.
Why is that a problem Nottobad? Are they not trained specialist respiratory physiotherapists? Consultants and GPs know more about treatment medications and less about how exercise affects the body of those with lung disease.
That's a pretty poor state of affairs to be honest yes get the BLF DVD it's pretty much the same as PR exercises shame you invested in your lycra mankini and mohair jumper 😁😁😁
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I've wasted some much time on wondering what to wear!!!!!!! LOL
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Fully understand your dilemma lol ..it seems very unjust to just say it's not happening
It just seems farcical that they set the PR course up and enrolled their patients without first checking that their were staff to run the course!
How sad your rehab course has broken up.I would be lost without our Rest of Life Programme (ROLF). We rely on an extremely enlightened cardio vascular specialist who set up a charity to provide exercise routines to anyone who has either heart or more general chest conditions. Unhappily this approach is not common place. Another instance where millions could be saved for the NHS if this initiative was universal.
As a broch patient I do agree that since our condition is so individual self management is high on the "shopping list".
CHSS are running an initiative in Scotland to pull together various exercise programmes such as ours and publish their findings.You might have a word with the folk down South to see if they are doing something similar.
Don't despair, get the DVD I'm sure it has some good exercises on it. Have to say in my area the rehab people have been great so I think it may be postcode lottery types you have in your area. There are exercises you can do at home but on your own it's hard to get the will power, but exercise is key to keeping well & stronger. Stick it out, good luck.
I have been lucky (?) to have had very good PR the last 6 weeks, with enthusiastic and very supportive Physios; plus some very good education add-ons. Agree that the class comradeship is a great help.
The next challenge will be to take some of the programmes into my own regime at home and in a local gym (who are ready to support me). Interestingly a PR researcher told us that Muscle strengthening is more important for ILD/IPF, which I have, than aerobic. I will however combine both in my own programme.
A big issue for me on the latest (BOC run) PR course is transport........When previously I attended PR it was at a hospital and run by NHS staff and I could get hospital transport.
Now BOC have taken over it is run on a non NHS site so transport is not available, this means I am dependent on friends and family willing to take me, hang around for one and a half or two hours, then take me back....I am reluctant to even ask! Such an imposition......
I did try the local authority bus service, call connect..............worked fine twice, then management cottoned on that the drivers were pushing my wheelchair the 25 feet into and out of the reception at the venue..........."Not allowed to do that, health n safety blah blah..........."
So why do I not wheel myself? It is a Transit wheelchair, I do not have the strength to use a self powered one and a motorised one would be A: too expensive
B: Too bulky to put in the car. C: Bought solely for the purpose of attending PR, not a good enough incentive.
On top of that the BOC exercises are limited to 6 or so, far less choice than the NHS, I have to say all in all I was happy with the NHS course, much less so with the BOC course.
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”Till we meet again “ 
exacerbation here we go again 
In the midst of chaos, I'm here to wish you all a very happy Christmas!
goodbye and good luck
