Can anyone please tell me what the DH/Nice guidelines are about pulmonary rehab? It’s difficult to get in my area, even if the GP or consultant refers you for it. You have to be in very poor shape to justify it.
Surely it’s supposed to slow down deterioration, not address it once’s it’s happening? In which case shouldn’t it be done early?
Thank you all !
I agree with you there. I was assessed at the top end of moderate with an FEV1 of 69% when I asked my GP to refer me to PR, which he did. That kick-started my attempts to improve my physical activity, helped me identify and overcome my tendency to overbreathing, and was the start of my improvement which has led to me achieving an FEV1 of 82% this year - normal range but for the obstructive curve in my spirometry test.
I'm based in Cheshire. Do show this post to your GP if you think it would help your case.
How exactly were you over breathing and what did you do to correct it? I have heard this before and wonder if in some situations I may be over breathing but don’t know how you identify the over breathing or how you correct it.
Thank you
When I exerted myself, I would breathe more deeply than necessary to supply the oxygen needed for the task. It wasn't my breathing that was the problem but the gas exchange because of the emphysema. Overbreathing made me light headed. It's akin to overbreathing through anxiety.
Now that I am aware of it, I use Ventolin before exertion and breathing control while being active to avoid overbreathing.
Thanks for the reply. Do you then just breath more shallow or what do you do to control the overbreathing?
Because I know what overbreathing is now, I stop myself from taking lots of long deep quick breaths (the sort you see sprinters doing after a race), and slow my breathing down. If I'm climbing a hill, I stop every 10 to 20 steps to bring my breathing back to normal before continuing the climb, instead of just pressing on. Using singing to master diaphragmatic breathing helps.
Hi
Quote
1.2.8 Pulmonary rehabilitation
Pulmonary rehabilitation is defined as a multidisciplinary programme of care for patients with chronic respiratory impairment that is individually tailored and designed to optimise each patient's physical and social performance and autonomy.
1.2.8.1 Pulmonary rehabilitation should be made available to all appropriate people with COPD (see 1.2.8.2) including those who have had a recent hospitalisation for an acute exacerbation. [new 2010]
1.2.8.2 Pulmonary rehabilitation should be offered to all patients who consider themselves functionally disabled by COPD (usually MRC grade 3 and above). Pulmonary rehabilitation is not suitable for patients who are unable to walk, have unstable angina or who have had a recent myocardial infarction. [2004]
1.2.8.3 For pulmonary rehabilitation programmes to be effective, and to improve concordance, they should be held at times that suit patients, and in buildings that are easy for patients to get to and have good access for people with disabilities. Places should be available within a reasonable time of referral. [2004]
1.2.8.4 Pulmonary rehabilitation programmes should include multicomponent, multidisciplinary interventions, which are tailored to the individual patient's needs. The rehabilitation process should incorporate a programme of physical training, disease education, nutritional, psychological and behavioural intervention. [2004]
1.2.8.5 Patients should be made aware of the benefits of pulmonary rehabilitation and the commitment required to gain these. [2004]
Remember they are only Guidelines and not necessarily set in stone.
My other half has just been in hospital with his Copd, and he has been offered a rehab App. We are waiting for a letter from the hospital to find out more but the Copd nurse said that he can go on there and get hints and tips and some exercises he can do himself, without attending an actual clinic. He works full time and was unable to take time off work, so hopefully this will help. Not sure if it’s something being trialled in our area, but might be worth asking your GP or hospital???
Thank you for all those helpful replies.
Ergendl, that’s worth knowing. I suppose it is aimed at making a difference, and does. I hope I get it, as I m being assessed next week, but told they’re very strict who they let through.
Stone, thank you for looking that up. Do you know what MRC grade 3 and above means? The really helpful guidance but not crystal clear to mere mortals.
An app would be sort of helpful. I would use one, definitely. But I’m a better group person if I’m honest with myself.
I’ve looked up MRC and seen it refers to breathlessness. I think I’m a 2 so that’s a really useful document.
Well problem is there are more copders than there are spaces on the programmes and therapists to run them.
So those with the most need will be given priority.
So those of us lucky(?) to be in the normal range won't get seen.. and it feels like they won't address you until it gets worse. Such is life.
A pamphlet might be good suggesting giving up smoking, exercise guidelines, chest clearance, diaphragm breathing, healthy diet etc for people who are not so badly affected..?
Could be a project for HULF?
The BLF website as a wealth of information regarding lung conditions, exercise,diet,living with.
Go the main site and type “publications “ in search box.
A sample diet sheet.
blf.org.uk/support-for-you/...
For COPD
I’m sure BLF already have done that, and mostly free:
I've been waiting for 13 months.last month I phoned to see when I was likely to get an appointment..not soon your 224th on the list. I'm pleased I started taichi I think it has helped my breathing together of course with frans assistance.lol. jane
Thank you. Thai chi is interesting. Are there other classes people attend which are helpful?
I've had several Pulmonary Rehab sessions - one a year for three years in Camden, London. But that was in 2004/6. I can only stress the help that I got from the pulmonary rehab people. They got me going after I had all but given up - I lived in a basement and I could not get up the stairs without collapsing. After PR I started going to a gym and exercising regularly. And I am still going strong some 14 years later, still going to a gym and exercising regularly. It should be available for all who have been diagnosed with COPD, not just the worst cases. In fact the PR could stop someone becoming a worst case. There has just been a European conference on COPD and exercise was stressed as being the best antidote for COPD.
Quite. That’s exactly my point. And it saves a great deal of NHS money. They have their priorities all wrong.
Hi there, it is recognised that rehab is good for COPD patients, however even in areas where they have the service it is often a long wait or reserved for those who have been hospitalised due to their COPD. I agree with you early intervention would make more sense, possible more availability in outreach centres or other non NHS Gyms
I was referred to pulmonary rehab by the lung specialist for education but was also considered too fit. This meant that I missed out not only on the exercises but also on the information part, the advice and support. I experienced a year of serial flare-ups as I didn't know things like how important it is to cover your mouth in cold weather, as no-one told me. Also, no one has checked my fitness for exercise. Our breatheasy group offers our own pulmonary rehab in association with the physio department at the local university. About half of our membership cannot take part as we haven't attended the NHS rehab, so have not had our fitness to exercise test, therefore will not be insured. I know of another breatheasy group that formed at pulmonary rehab so as to carry on with the exercise. Again, members need to have already done pulmonary rehab to take part.
I think that everyone on diagnosis should have access to the information part and be checked for fitness to exercise.
There are also people in our group that have repeated NHS pulmonary rehab, which includes all the information part, which they have already done so don't need.
Properly informed and supported people who are encouraged to exercise and stay well, both physically and mentally, will surely save the NHS huge amounts of money.
This does make me a bit angry, when people aren't considered ill enough to be given help or advice. I know places and resources are limited but surely it makes more sense to maintain a person at their better level of health, rather than wait for the person to deteriorate to a level of illness to qualify for support.
We can research our own conditions to a certain extent, that's how I found this forum, but there are things we wouldn't even know to look up or ask because it's something we never knew to consider in the first place. It's a false economy (and scandalous) to allow someone's health to deteriorate through a lack of basic information.
Happily for me, I was allowed it. But I still think that, in general, the NHS is made to focus fat too much on cure and not prevention.
Naughty but nice
Nice picture.
A nice sunset over the lake
Nice recipe for chilly days
Nice 5Km around Thornton Reservoir.
