Breathe Easy groups

Thank you very much for the information.

Hello Thank you.  I am not sure but I think there is a Breathe Easy group in our area but will have to check.  Is there a charge as I assume that it is not NHS.  We were waiting until my husband got a proper diagnosis from the consultant.  When he was in A and E they said probably COPD because he was a smoker for many years (gave up 7 years ago)  When he had the lung function tests the lady there said she thought it was asthma.  He was supposed to see the consultant this month but so far no appointment despite phoning the hospital and chasing it up will have to phone again.  I am not really surprised you have to wait ages for clinic appoinments.  Although in a different area my son who recently had a minor stroke and was supposed to see a consultant after 4 weeks has just found out that he will not be seen until January.  He is now seekinga private physio as his arm and hand are still not back to normal and as a drummer he cannot coordinate properly.  I realise it is a sign of the times with NHS cuts and long waiting lists but sometimes you feel like no one cares.

By the way to attend the breathe easy group do you need to have been given a proper diagnosis first. My husband is doing ok but gets tired and the peak flow readings have improved since being on all the inhalers however it is the cough which really bothers him and not sure what to do or if this is normal for COPD if that is what it is.

The "lady"  (nurse, doctor, what??) who did the lung function test should have done it with and without ventolin, which would make it clear whether it's asthma or not.  Not that it matters really, the management is pretty much the same, except that ventolin won't help if it's empnysema related COPD

Hi I did not go in with him he just said the woman who did it told him she thought it was asthma and yes the lung function was done with and without ventolin.  The woman was not a nurse just in ordinary clothes so don't know what her qualifications were.  Just wish the appointment would hurry up.

Do all nurses wherever you live wear nurses' uniforms?   In Australia you can't tell who's a doctor, a nurse or a cleaner most of the time, which is ok except often they don't tell you what they are unless you ask.   

 

As far as I am aware all nurses wear a uniform.  My husband will never ask questions like that which drives me mad.  I asked if I could come in with him as he is hard of hearing despite a hearing aid and was told no it  won't be necessary.  He was only about 20 minutes having the tests done. I always tend to read their name badges my husband never does.

Maybe next time you can insist on being with him because of his hearing problem:  don't let these people boss you around like that!

You are right I always go in with him to hospital appointments.  This time I hardly got the chance to answer as she had already shut the door.

How rude is that?    Next ime open it and go in no matter what anyone says.   The arrogance of some of these people never ceases to amaze me.

However, I do know how difficult it can be:  when my late mother had cancer years ago she asked me to go with her because her doctor wasn't explaining anything and then when the specialist became impatient with my questions she told me not to bother the doctor!

If your husband wants you there you are quite entitled to be there, but if he lets it all happen I guess you can't do much about it: the consequences will be his to deal with

Hi Chris I have contacted our local breathe easy group which is held monthly just a short bus ride away.  I spoke to the man who runs it and he tells me that they have guest speakers for the first hour on all sorts of subjects and then refreshments and a chat but no actual exercise session.  He has told me that they are having a senior physio therapist at the next session who works with COPD patients.  We will probably go along to this.  As regards pulmonary rehab I understand that you have to be referred by gp or consultant and that you need a firm diagnosis and not everyone will be considered it depends how bad you are and whether they think you need it.  My husband found out this morning that his appointment to see the consultant is not until December 17th first one available.  We are not happy about this and nor was our GP.  That's the way it is with NHS. I don't think my husband was ever referred back after being in A and E for the 2nd time hence the delay in the appointment.  Will have to be patient.

That's obviously a support group rather than rehab.   In Australia we can self refer to a pulmonary rehab group and fitness levels are checked at the start and every week before and after the exercise session.   They also have guest speakers and healthy refreshments either before or after the exercise session.  

The only lack I found was that there was little or no attention paid to the emotional effects of chronic illness, which I've had to deal with on my own with some support from my gp and his practice nurse.

It sounds to me as if in the UK the breath easy groups would need to be supplemented with rehab exercises off the internet until you could get into rehab.   I  haven't had to look for specific exercises there because the ones I learned at rehab make an incredible difference provided I do them most days:  I certainly notice the difference in my breathing if I miss ore than 2 days in a row, so they're definitely worth learning and then practising.

I think that some breathe easy groups in the UK do offer rehab exercises

but our local one does not.  Perhaps we will be able to find out more when we go next month.  You are probably right about no attention being paid to the emotional effects of chronic illness and I would imagine it might be the same here in the UK.  As far as I can make out having had a conversation with the man who runs the breathe easy group p rehab is limited to those who need it most.  He told me he had done the  course several times though.  We will just have to be patient and hopefully all will fall into place in the next few months after my husband has seen the consultant on December 17th.   Just hope he remains much the same until then.

It's hard to be patient with such a long gap to see a specialist, isn't it?   In the meantime, your bloke could start rehab exercises from the internet: I an promise they are worth the results!   

I like the fact that management of my COPD is mainly in my own hands apart from prescriptions for the medication and regular spirometry tests, but I do know some people don't like the idea of taking so much responsiblity for their own health.   

I know a couple of people now with advanced COPD who rejected rehab years ago, one because of "not liking groups" and the other didn't even bother to check out what it was all about, both of which I think are self-destructive attitudes, but of course it's up to each individual to decide how well they want to be and for how long.  COPD will get us all in the end, but I prefer to postpone that end as long as possible and stay as healthy as i can in the meantime and enjoy what active life I have left

Hi Jude and all those who were kind enough to reply to my posts.

An update on my husband.  We have just come back from the hospital.

He did not see the consultant just one of the lung doctors, but expected that.  The diagnosis is Asthma/COPD because he had elements of both conditions. He does not have to record peak flows any more, interestingly in the last few weeks the reading have really risen to sometimes 400 in the late afternoon and 300 or more in the morning.  Still very variable and according to ther lung doctor 40% difference, if I understood this correctly.  He is to go on with the same inhalers with instructions when he has a cold to first increase symbicort then if necessary see gp and start on emergency pack.  We asked about Pulmonary rehab and the doctor said it is usuallly reserved for those who really can't breathe well.  He said perhaps something to think about for the future.  My husband is not keen but the doctor said they are good and gp can refer you if you wish.  The biggest advice was as expected you must lose weight.  He has been signed off the doctor said he did not need to see him any more.  All the blood tests taken last time were ok.

Now I have to try and help him with a diet for both losing weight and for controlling his diabetes.  I will be dieting with him as I need to lose a couple of stone.  Hope everyone is well and Merry Christmas to you all.