Exercise related research

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SusieQ Posted: 05-29-2009 10:44 PM

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In the Summer 09 edition of Breathing Space there is an article on how exercise can help in cases of COPD. 

The BLF did some research to find out whether carefully planned exercise (pulmonary rehab?) after hospital admission for worsening COPD can help prevent further admissions.  They found out that, surprise, surprise, yes, it did indeed.  Heaven only knows how much money they wasted on that little bit of research, but wait for it  ...........

.... they now want to carry out a wider study over a longer period to see if exercised based rehab can make a significant difference for people with COPD and reduce the impact that hospital admissions can have on health services.  The Chief Executive says:  We are very excited by the findings of this research.

How much money are they going to waste on something that we already know is good for us.  Healthy body = better chance of avoiding exacerbations (love that word - it sounds all mysterious).  Why not spend that money on putting in place more PR units and getting more people  through the programme.

Drives you crazy sometimes and to think that these people are batting on our behalf. 

There are a couple of other things in there that got up my nose, but will give it a rest and go to bed.

Good night all.

Sue

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Geof the Miner replied on 06-06-2009 12:47 AM

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Sue yes I have just read the same Breathing Space. the thing what came out to me the most Young Nathan lost his dad at seven years old and didn't end up on the Jeremy Kyles show. No he went all the way to help the rest of us by running in half marathons since his dad died till the present day. Now he wants to go further and study our complaint so that (IN his words) help stop other kids losing their dad's and where ever Nathan is so is his mam. Here is another one Shibley. We will never hear of his deeds in the media because the good done by these people don't sell newspapers. So Sue where ever we see bad news there is a lot of good what isn't shown. Lots of love. Geof the Miner, I can't believe that Maggie once called me scum of the earth.

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craiggc replied on 06-07-2009 12:44 AM

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sue - quick response as its late.....

you raise a valid point - and one i would like our medical director to respond too, when shes back from leave ill get her to drop in - trust you can wait until then. nite - nite

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SusieQ replied on 06-07-2009 2:37 PM

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Thanks for that Craig - would be very interested in her response.  And as for you, you should have been in bed ages ago!  What have I told you before about staying up so late! 

Sue

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SusieQ replied on 06-07-2009 2:54 PM

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Hi June,

Fully understand where you are coming from, but, in this instance, the medical community has the answer and the proof already;  it does not need to listen to us.  My GP is very active in helping with PR courses and attends most of them - ask him what the benefits are and all those other docs and nurses involved.  Quick email to all those medics involved and you have your answer - please do not spend loads of money on trying to reinvent the wheel.

Apart from that, we already know that some exercise is good for all of us, whether there is anything wrong or not.

Sue

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Geof the Miner replied on 06-07-2009 5:42 PM

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Hello Sue, I disagree with June on this occasion, This is why I keep blowing my head about politics. This is what is happening all the time, wasting money, the people who are wasting the cash the most use excuses like its a tax dodge and we sit there tending to believe it; until like I have said before, when it happens to us. On this occasion it is and thanks to Sue it as highlighted it for us. I said somewhere on here before, I was stood in front of the Trust Executive, PCT chair thanking them and singing the praises of them building a Pulmonary department what a lot of other people was envious of. There were three peole off the top table got up and made presentations on the Pulmonary section and was going to do more in order to keep it up there at the top. The following week we were robbed of half our unit. Look what as happened to Southport Pulmonary unit closing, wasn't that in one of Chris's post.

          Sue this is why I keep saying that I like you because you are so strong, you are not like the other 99% of people that just let THEM ride rough shod over us. It is happening all over, all the time. Sue, You me and everyong that as gone through Pulmonary Rehab knows that it works, I know that I wouldn't be here now without it and if The BLF,  NHS or even The Brotherhood of Man wanted to research if Exercise works don't spe- waste millions of pounds doing so. Just read comments on here ( I thought that was what this Forum was for)? Then go to their Breatheasy group's listen to people that used to be getting admitted to hospitals on a regular base and now they don't why Because they have all done PR and are still exercising, don't forget just going to Breatheasy is exercises. Thank you very much Sue we have just got to get a few million more to be has strong as you then we may be able to stop it. Just a little thought to finish what as been said on here and no end of times elsewhere I don't use my Ventolyn, Bricanyl any more I don't need it because of exercising, the only time I use it when I am not well. Just think in a year how much money that is costing not the NHS not the BLF but those upstars who have the control. Stay strong Sue. thinking got a good one here. Geof the Miner.

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michelle replied on 07-06-2009 3:31 PM

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Hi geof,

I totally agree with you about pulmonary rehab working and the need for stop wasting money on useless research. I wish i could have got it all years ago.

Although i attend ph and try to go to the gym as much as my health allows, but not everyone can give up their inhalers because they excercise. You are one of the lucky ones. It sounds as though you are selling ph as a miracle cure to stopping inhalers. Maybe could be if copd patients were referred in the early stages of illness. I dont mean to be blunt with you, just wanted to clarify everybody is at different stages of lung disease and that whilst ph can help you to stay stable it may not be the case for everybody.

Yours michelle

P.S. Thats not to say im really pleased it has enabled you to come off your inhalers.

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Shibley replied on 07-06-2009 4:33 PM

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Many thanks to all for posting.

The posts obviously refer to the article entitled, "How exercise can help in cases of COPD" (pp.22-23),

Further research is needed because the period of time of their original study following first hospital admission for all patients was only three months. This is a rather short time, and it may be the beneficial effects of the planned exerise regimen might be found in a greater proportion of patients, or last longer for patients, after a longer period of study. If this were the case, it could be possible that any benefits were more long-lasting and even "permanent". This type of research is especially important because it involves "non-pharmacological intervention" - i.e. hopefully patients may get benefits from fewer drugs; and of course drugs do have side-effects.

That's in a nutshell why this research is not "re-inventing the wheel", and could benefit patients for the future.

Please post if you would like further info.

All best wishes as usual.

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harry replied on 02-06-2011 8:36 PM

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May.-2009

Feb-2011

"How exercise can help in cases of COPD"

what hope is there for benefits of the "non-pharmacological intervention"

any results available on this project yet, please ?

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SusieQ replied on 02-06-2011 8:46 PM

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Harry - please be a patient little slug - 2 years is nothing in the world of scientific research, it will probably take them many more years to find out what we already know!!!

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rita replied on 02-06-2011 9:23 PM

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Is it me?  I seem to remember Dave(?) recently posting some infor about this from the US of A and they decided it was a very good idea and did help indeed.  AND this was undertaken some years ago.  Am not sure if it was called PR as we do or just exercises?

I'll see if I can find it...............................

Bewildered of????????? 

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Ian replied on 02-06-2011 9:24 PM

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Still waiting for the results of research into "Treating the pain associated with bronchiectasis" from 2008 so probably a little hasty,

http://www.lunguk.org/research_and_grants/researchprojectsreworked/research_projects_awarded_in_2008/mechanisms_of_lung_injury_repair_and_regeneration/treating_the_pain_associated_with_bronchiectasis

asking as soon as this. It is always good to question it is what you do with the answers that shows wisdom allegedly.

Ian

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SusieQ replied on 02-06-2011 9:28 PM

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craiggc:

you raise a valid point - and one i would like our medical director to respond too, when shes back from leave ill get her to drop in

Wonder if she is still on leave?

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Lorien replied on 02-06-2011 9:39 PM

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Saying nowt about spelling and punctuation. 

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harry replied on 02-06-2011 9:54 PM

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Oi, 

Slug wonts too no why sue called the topik qick rant, shurly shuld be caled slow rant ......? bewildread 50 goblet squats and huggs

sluggs

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Lorien replied on 02-06-2011 9:56 PM

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Nearly, but you missed out the American spelling and apostrophes.

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harry replied on 02-06-2011 9:59 PM

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you raise a valid point.-.pal-hicc...don-t quate me but you can bet your bottom doller those guys hav already got the patent out on it.......pure gold if it works

edited in ......post rita's post,  for quick click thingy link

http://dailyindependent.com/local/x1192754000/Breathing-better-20-years-later

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rita replied on 02-06-2011 10:44 PM

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Found it - knew it was there somewhere stored in my list of what I have looked at on the net recently.  (aren't these machines clever???)

Experiments of 20 years ago into helping emphysemics which Dave posted earlier this week or rather last week

http://dailyindependent.com/local/x1192754000/Breathing-better-20-years-later

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markpilling replied on 02-07-2011 9:38 AM

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Good Morning

I'll do some digging around and see what further research has been done to follow up the "How exercise can help in cases of COPD" Breathing Space Summer 09.

Also I'll see what the outcome of the "Treating pain associated with bronchiectasis"

Yes as we all know exercise is of immense benefit to people living with a lung condition - but it's never that easy is it. There are many people who still don't exercise as much as they should - Pulmonary Rebabilitation courses only last for 8 -10 weeks - then what happens? Many people want supported exercise to give them the encouragement and motivation to continue.

If you are lucky you may get on a Pul Rehab course after waiting for 6 months or longer - that's if the course in your area is still running and hasn't been closed.

If the above research and any further research results in exercise courses being available from the day after someone leaves hospital and then for a much longer period then 8 or 10 weeks then that would be great. Research trials like this one are what is needed to change and improve the treatment of lung conditons - and yes it takes a while.

BLF Active was set up to provide exercise instructors to provide exercise classes for people aftre finishing their Pul Rehab course - and also to provide classes for some people waiting toattend Pul Rehab.

Thanks

Mark

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markpilling replied on 02-16-2011 12:27 PM

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Hello

"Treating pain associated with bronchiectasis" - update.

This research aimed to assess the possible benefits of using a TENA machine to help treat lung/chest pain in people with bronchiectasis. The research was carried out in one hospital, and it appears there were problems finding and reccruiting enough people to take part in the research. So the results from this research are not sufficient to say if the TENS machine is effective. However it has indicated that there is a need to do more research into this area but a number of hospitals so that more people can be recruited and therefore the results more meaningful. The study was also helpful in identifying issues that need to be addressed if a larger study is carried out.

As yet there have been no further research studies to follow on form the above research study.

Hope that helps - if anyone needs any further information about the study please call the Helpline - 08458 50 50 20.

Thanks

Mark

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markpilling replied on 02-16-2011 12:58 PM

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Hello again

"Early Pulmonary Rehabilitation following Exacerbations of Chronic

Obstructive Pulmonary disease"- update

People diagnosed with COPD usually attend a Pulmonary Rehabilitation course at some time after diagnosis – the time a person has to wait varies from area to area. Pulmonary Rehabilitation improves exercise tolerance and quality of life – and this is backed up by evidence based research.

This research study aimed to determine whether exercise based rehabilitation administered immediately after a COPD exacerbation, could reduce further exacerbation episodes, which may otherwise re-occur in approximately one third of people within 3-months.

The research showed that during the three months following their original hospital admission, 33% of patients receiving usual care were re-admitted to hospital for an exacerbation, compared with only 7% of patients receiving post-exacerbation exercise rehabilitation.

This was a small research study and was seen as a “first step” – hopefully a further larger research study will be carried out to produce more data that can then be used to introduce changes in the way people are treated after being discharged from hospital following a flare up of their COPD.

Contact the Helpline - 08458 50 50 20 - for more information on this study.

Thanks

Mark

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rita replied on 02-16-2011 2:53 PM

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Hello Mark

Thank you for responding to our queries, it's always useful to get feedback even if it is negative!!  What also seems to be a concern is the actual LACK of concern shown by the medics when we complain of chest area pains alongside all the other symptoms.  I suspect we all agree the necessity of the exercise but again it appears to be a touch of the post code lotteries syndrome and once diagnosed 6 months seems a long time to wait.  Trouble is too many of us to meet demand and am not quite sure how that can be addressed.................. 

At least your response shows one attempt at research - negative tho it is.

Thanks again

rita

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Ian replied on 02-21-2011 12:27 PM

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Thanks for Looking into the use of TENS (transcutaneous electrical nerve stimulation) for treating pain associated with bronchiectasis research for me Mark , hope a larger study group can be found and the meaningful research carried out which would establish the the relative effectiveness of TENS in managing this pain in the near future for those people who are suffering this pain.

Many thanks

Ian

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arrian replied on 02-21-2011 12:50 PM

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just want to add to the pulmonary rehab posts; at our hospital it's the lack of patients that are the problem!! the course will start with 14 on week 1, by week 2 three or four will not turn up, and by week 3 if 8 or 9 turn up it's a surprise!! Harry has done the rehab twice now, but i dont know if he'll be offered again ( the second time it turned out he was quite poorly, so couldn't manage it) but if patients don't use it, funding will eventually be stopped!

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Ian replied on 02-21-2011 1:09 PM

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Hi, Arrian it is a shame when rehab is not well used , in my area there is a near six month waiting list for it though some get slightly sooner if able too take up a place when somebody is not able to attend due to ill health and the maintenance program afterwards is largely self regulated. Would physiotherapist visits be possible for Harry ? not sure what is available in your area from the hospital.

best wishes

Ian

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harry replied on 03-08-2011 10:21 AM

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Referral to and timely availability of pulmonary rehabilitation has now been shown to, reduce the three month readmission rate in COPD from 33% to 7%. To date this is the only intervention that has been shown to alter the very high 3 month readmission rate seen in COPD

 British Thoracic Society

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SusieQ replied on 03-09-2011 5:57 PM

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I spoke to one of the BLF Trustees at the Conference and she explained it perfectly.

The BLF want to get funding to pay for the PR courses and follow on and people will not put their hands in their pockets to provide said funding, unless they have scientific proof!

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markpilling replied on 03-09-2011 8:18 PM

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Somebody seems to have got hold of the wrong end of the stick here.

The research was funded by a BLF research grant - someone applied for the grant, met the criteria and was awarded the grant - I can't remember the hospital where the research team were based, but I can find out.

The BLF did not carry out the research. This research is all about providing pulmonary rehabilitation in a different way to the way it is at the moment.

Pulmonary Rehabilitation is run by hospitals - if the results of the further research are positive they can be used to "encourage" hospitals to provide more courses. The BLF won't get the funding to provide the courses - the BLF does not deliver pulmonary rehabilitation.

Mark

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harry replied on 03-09-2011 8:36 PM

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markpilling:

but I can find out.

 

Yes please Mark

 Would like to know if was the Leicester Glenfield, slug did guinea pig, Hospital early intervention P.R .......

.    Electro muscle stimulation trials......

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SusieQ replied on 03-11-2011 9:38 PM

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markpilling:

Somebody seems to have got hold of the wrong end of the stick here.

Apologies Mark - in my defence it was the end of the day and I just remembered that someone needed scientific evidence before someone else would put their hand in their pocket to fund something.

Sorry

Sue