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Pulmonary Rehab, only for some conditions

wizsue profile image
16 Replies

I have bronchiectasis. The breathlessness and endless coughing really takes its toll. I do have other conditions such as fibromyalgia, AF and several more. The local hospital does very little to help people with bronchiectasis, here are the drugs, there is nothing else we can do. My GP said he would find out if I could have pulmonary rehab. Last week the secretary phoned and said unfortunately it is only for people with COPD. Why is there so little available for so many people who like me have bronchiectasis?

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wizsue profile image
wizsue
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16 Replies
Ergendl profile image
Ergendl

It must depend on the area, as at the Pulmonary Rehab group I attended, there were people with all sorts of lung conditions, not just people with COPD. Check out the British Lung Foundation website as they have exercise videos for people with lung problems. All the best.

peege profile image
peege

Ergendl is right, it may be your area of the U.K.

I don't have copd and I did PR in SW London. Now I'm in Gloucestershire and there is a post PR group meeting in Gloucester. It's brilliant, a thriving class held twice weekly. Heart patients also attend. There may be something like that in your area.

Somewhere on BLF you'll find exercise videos, sorry I haven't got time to find the link at the moment.P

wizsue profile image
wizsue in reply to peege

Thank you, I will look it up on the BLF website.

DanceQueen profile image
DanceQueen

you sound the same as me

it seems a struggle to stay alive don't it?

wizsue profile image
wizsue in reply to DanceQueen

Yes, most days are a struggle but we have to keep going. Things I am able to do now are very limited, so I just have to adapt. I do admit I get very down sometimes. One condition is bad enough, but to have several life limiting ones just seems unfair. But, it could be worse, that is what keeps me going.

Pentreath profile image
PentreathVolunteer

I asked my consultant if she would recommend PR and she wrote a letter to say that I would benefit - for bronchiectasis. Great course, I was the only bronch that did not matter. I live in Cornwall.

wizsue profile image
wizsue in reply to Pentreath

My local hospital (32 mile round trip) doesn't offer anything. There is a group nearby but they have a strict criteria, COPD only. there really isn't anything available. I live in Norfolk.

peege profile image
peege in reply to wizsue

I wonder if there's a Breatheasy group in Norfolk. I know there's at least one in Suffolk. If you can find one not too far away they'd be a good source of information & support. P

I have had this problem with bronchiectasis too. It's discrimination and needs shouting about.

wizsue profile image
wizsue in reply to

It is discrimination, unfortunately who do we shout to?

in reply to wizsue

There in lies the problem. It is a post code lottery.

wheezyof profile image
wheezyof

I agree with contacting British Lung Foundation. In my area we do pulmonary rehab for all lung conditions.

wizsue profile image
wizsue

I will contact the BLF. Unfortunately This area offers very little pulmonary care.

gingermusic profile image
gingermusic

Surely Bronchiectasis comes under the COPD umbrella anyway so I cannot see why they refused you on the course. That seems very unfair.

Nottobad profile image
Nottobad

We should all be treated the same I live in Scotland and I have been on 3 PR courses since my diagnosis of COPD in 2006. It’s not right that depending on your post code. Determines what treatment you get england.nhs.uk/ourwork/clin...

wizsue profile image
wizsue in reply to Nottobad

Thank you for the link, really interesting. Apparently it is the group that has a strict criteria, COPD only. I think it will be a good idea to follow this one up. I am sure there are others who would benefit from this link too.

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