rehab: I have had copd for 12years had... - Lung Conditions C...

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rehab

newlands profile image
24 Replies

I have had copd for 12years had asthma all my life my fev i is 23 saw the nurse at the hospital aug and asked why i had never been asked to attend rehab her reply was It will be of no use to

you this puzzles me , also my doctor has told me not to exert myself Have never been to see a consultant regarding my copd....... Do hope the change in the weather hasnt t bothered you too much

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newlands profile image
newlands
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24 Replies
katieoxo60 profile image
katieoxo60

Hi newlands, I share your sentiment about rehab I have asked several times but have never received a referral in fact I feel like I am being fobbed off with excuses. Wonder who decides whose suitable for rehab? and what the real criteria is. I have COPD like yourself plus other health matters that are helped by light exercise, guess I will have to invent my own exercises.Enjoy the rest of your day

newlands profile image
newlands in reply to katieoxo60

thanks for your reply im sure its something to do with age in my case

katieoxo60 profile image
katieoxo60 in reply to newlands

thought age wasn't a thing in rehab, but I feel that too think it's because I no longer need to work as I am retired but still need to stay as well as possible to maintain independence so age should not enter into it. Our health should be the main concern

dall05 profile image
dall05

Hi newlands, age shouldn't stop you getting the care you deserve, in the group I was in for PR there was quite a few in their 80s who are still coming now to the follow up Fit to breathe exercise classes. Its good for a chat even if you can't do to much, everyone does what they can and there is no pressure to do any more.

Tony.

newlands profile image
newlands in reply to dall05

so nothing to with age then thanks

longlungs profile image
longlungs

sorry to hear that Newlands doesnt sound very fair ,make some noise and try again maybe eh? tis your right your body etc etc.lol.Janexx

stone-UK profile image
stone-UK

Hi

I am 66 lung function 22%

I have just completed a PR class 6 weeks 12 sessions.

I did all the same excercises as the others. The only difference was, the five excercises that we did twice, I only reached 1 minute rather than two minutes. The other 4, I reached the same 2 minutes,

I was referred by my consultant .

newlands profile image
newlands in reply to stone-UK

thanks for your reply maybe its my other health problems that why they wont refer me

sadie1951 profile image
sadie1951

HI Dorothy, I did have two PR courses some years ago, but when it was suggested I go again while i was in hospital last year, I was told I wasn't suitable. Too far gone I think! There are gentle exercises for copd on You Tube but you would have to be careful to have someone with you while you do them, just in case you jump up and start doing the funky chicken and do yourself an injury. Ha ha ha!!! Just put "gentle exercise for copd" in the You Tube search bar and you will see a choice. Sadie xxx

newlands profile image
newlands in reply to sadie1951

hi Sadie thanks for your reply yes i do gentle exercise in the chair every day physio said not to do any standing so every hour on the hr i stand and walk too the window and back got the reputation of been a nosey neighbour !!!! thanks again Dorothy xxx

Toci profile image
Toci

Hello newlands, I have just completed my third course - at a local hospice. It was very gentle (needs to be for me as I am end stage!) and very enjoyable. Nice to do a little with others rather then alone. It gives more incentive. Please ask about seeing a consultant. It was my consultant that referred me twice and the hospital Respiratory Team once. xx

newlands profile image
newlands in reply to Toci

Dont think i want to see the consultant at my hospital he has a bad reputation .I had a bad fall breaking both my ankle and leg had too have pins screws etc my breathing was really bad the consultant dealing with my leg asked 3 times for him to come and see me and he didnt so not interested in seeing him .Have an excellent doctor will ask why i cant have rehab thanks again

take care Doropthyxx

in reply to newlands

ha doll.read your post,i.m sorry please look after yourself,and 2 fingers to the con,bernicexxxxx

peege profile image
peege in reply to newlands

Good luck with it New lands, of course you have a right to PR, it will really help you.

I swear my body is better at keeping infection at bay since doing my course. The nurse at my GP practice organised mind, also she was very supportive regarding my awful con too. I refused to see him after two sessions with him and saw a registrar third time who was fantastic. Go back for my diagnosis on Monday :-)

By the way, the physios running my course were very good with people on oxygen, older folks and people with other ailments restricting their movements. You go for it. Peeg xx

Hello my husband was told it wouldn't help him by the doctor and has never seen a consultant but I did find out that there is a specialist respiratory team. I rang the practise nurse who referred him. The nurses visited at home and referred him for a pr course. Just about to complete his second course . It seems unfair and the one thing I have learned is to ask and ask . Perhaps you could ring the blf helpline tomorrow and they might be able to give you some advise . Take care TAD x

Hello my husband was told it wouldn't help him by the doctor and has never seen a consultant but I did find out that there is a specialist respiratory team. I rang the practise nurse who referred him. The nurses visited at home and referred him for a pr course. Just about to complete his second course . It seems unfair and the one thing I have learned is to ask and ask . Perhaps you could ring the blf helpline tomorrow and they might be able to give you some advise . Take care TAD x

newlands profile image
newlands in reply to

hi it was the specialist respiratory team that told me it would be of no help to me thanks for your help take care Dorothyxxxx

johnwr profile image
johnwr

Hi newlands,

I am so surprised at your post, and the replies you've had. Pulmonary Rehabilitation I always thought was for all of us who have compromised lungs. I am well known on this site for having had Pulmonary Valves fitted. About a year prior to that operation, I was referred to a consultant for Lung Volume Reduction Surgery, In other words, cutting out a diseased section of one of my lungs so that what is left has room to work better. I was turned down for the op for not being fit enough, and told 'Go away and get fit and we'll look at you again.'. At the time, my FEV1 was below 20%. I got accepted for a PR course straight away.

Being on that course was probably one of the most important things to happen to me in the last twenty years. With a regular, well monitored excercise period for an hour and a half, twice a week; and a good lecture and discussion for a further hour or so.The excercise period consisted of a circuit of about a dozen exercises, each of which you do for two minutes or so, then rest to recover before the next one The topics covered were varied but relevant to lung disease. They included relaxation therapy, nutrition, breathing techniques, drugs and how they work, ambulances and how they respond to and stabilise patients who are short of breath, and other topics. At the end of that course, I was fitter, happier because of the social interaction, and in a better position to help myself in times of difficulty.

So as you see, the excuses that 'You are past it.' or 'It won't help you.' are empty attempts to fob you off, unless they have a good solid medical reason. Without that, these people are not behaving professionally, and need to be pulled up.

So, what to do? Take someone with you and see the senior doctor in your local practice, and politely, but firmly ask for a referral to a respiratory consultant. If you are refused, ask them to write down the reasons why. A referral can take several months to arrange, so be prepared for that. Depending on the consultant, you may be asked to attend some assessment clinics, to aid with diagnosis. If PR is available locally to you, the consultant will probably recommend a course, but ask him/her about one anyway.

If you are refused, without a good medical reason, then if feasible, change you doctor's practice, send a letter of complaint to the Practice Manager by recorded delivery. Also send a copy to your Local Area Health Authority. Explain clearly why you are complaining. If necessary, get someone else to write it for you. Don't forget to keep a copy for yourself.

Dealing with COPD is largely a matter of educating yourself by get good info from sites like this, by asking questions. You will also help yourself best by maintaining a positive attitude. Basically, get grumpy, and let others know it, but temper it with a good sense of humour.

If you want to know more about my experience with PR, follow this link to an article I wrote on the subject:

bitz-and-bobz.co.uk/copd/pu...

To get some more knowledge, read the articles I've written on this blog. You can get to them by clicking on my name, then scrolling down the list.

Ask me questions if you need to.

breathe easy

johnwr

newlands profile image
newlands

Hi thanks for your reply dont need to have a fight with my doctor she is excellent ,and like i said in my post i have no wish to see the consultant who has a bad reputation . My sister in law has read my post and she says its because i have Myasthenia Gravis a muscle condition that can affect breathing its a condition made worse by exercise so as i had never thought this might be why will ask my doctor the next time i see her . People should explain this things many thanks for your detailed reply you take care PS my sister in law was a matron Dorothy

johnwr profile image
johnwr

Glad you have your situation under some sort of control. At least you know the reason why perhaps PR is not for you. As regards the consultant, ask to see a different one. Confidence in the team looking after you is essential. If you haven't got it change the team, you're the important one, not the consultant.

About my previous reply, well, it might help someone else.

Matrons were always held in high regard as I remember them, so please pas on my respect for your sister-in-law.

breathe easy

johnwr

newlands profile image
newlands in reply to johnwr

yes john will look at your post ido have a good sense of humour i am lucky the only time i have been depressed was12years ago when my husband died my doctor says i accept everything thats thrown at me health wise this forum helps me a lot you take care and thank you for your kindness

Dorothy

Lots of good advice to which I cant add, Newlands, but found it very interesting reading. So good luck with what ever happens.

newlands profile image
newlands in reply to

hi thank you yes very interesting replies hope you are feeling ok annie take care

Dorothyxxx

Steamtrain1958 profile image
Steamtrain1958

Hi, newlands, am seeing the PR nurse who runs the courses in my area on Monday with a view to going on my second course, your story and plight has got to me and if you don't mind, I intend to challenge my lady as to WHY it is not for you. After all said and done, we are not running marathons on these courses, or competing for the next Olympics, it is very light simple exercise, that although I think it taught me loads, I also found it a little slow and laborious . I wish you well and will let you know what she has to say. June

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