Lung Health Framework

[chrisw]

As many of you know Jackie and I have had some involvement with the Lung Health Framework in Ottawa.
The next stage of this is to take the show on the road, and involve people in each of the provinces, and this will involve patients feedback and involvement

"to discuss 4-5 key topics/issues of the Framework which relate directly to patients. This session will be facilitated and take
place in each province/territory either right after or right before the day long workshop ."

We have been asked whether we have any suggestions of topics/issues that we should bring forward for discussion?"

My suggestions are:

1) When all COPD guidelines emphasize pulmonary Rehab as one of the key treatments for COPD from the early stages, why are ways to make it more readily available, especially in areas away from the major cities, not being aggressively pushed?
2) When evidence shows that "Wellness" is critical to health, and that ambulatory oxygen is necessary for those with COPD to exercise at a level needed to achieve "wellness", and the data from the NOTT study shows the most benefit of oxygen is for those who are "high walkers" but that the benefit does not realize until patient have been on oxygen for about 500 days, Why is it that the provinces are not funding ambulatory oxygen until oxygen saturation during a short walk test drops below 80%, when this is a level known to cause secondary pulmonary hypertension and cor pulmonale? Note that Medicare in the US is starting research in the benefits of raising the prescription guideline from "below 89% SaO2" to "below 92% SaO2 for rest AND exercise.

Please let Jackie and me have you input as soon as possible.

[John]

Chris;
Just some hopefully help full thoughts. Do think that the attitude of copd being a self in flicked disease has any thing to do with the lack of enthusiasm on the part of ins co to pay for rehab? I have come across some predigests in this area here in the States. Maybe it's time for them to learn that copd is here to stay & only going to get worst as time goes on if they don't address the rehab issues . I know they Meaning Ins co. would love to see us all dry up & blow away. I find they tend to listen better when it is explained in a $ & cent perspective . Once they realize that rehab will save them $'s in the long run then they may take notice .

[maryaz]

I just saw this post and thought I would reply before I go take a nap. I am in the USA. I recently went to a COPD Confernece in Arizona. It was put on by the Lung Assn. Seems they have some money for COPD and wanted to find out best ways to use it. I do not know the results yet but didn't care too much for what I kept hearing more of.

IMHO, we need COPD Education. New people diagnosed have got to begin to learn that it is not the end of their life. What that takes I will leave up to all of you in Canada.

Pulmonary Rehabs and COPD Support groups are of utmost importance to me as I am thinking of the people with COPD who have not much clue, if any, of what the disease is all about.

They did a round table discussion at this conference. They asked if a person would stand at each table and tell of one of the many subjects that were discussed that they really felt were important.

GUESS WHAT KEPT COMING UP: Smoking. I realize it is important but da_ _ we get little awareness until now and have little monies compared to other diseases. If we had all the money needed, I would say great but right now we have 'stop smoking; campaigns'. They talked at one table about reaching young kids. Talked at another about reaching the healthcare workers, like the nurses and techs at hospitals that you see smoking outside the building. All this is fine but so far smoking is most of what we keep hearing. Yes, I want the kids to stop. Picking just a few suggestions to start, lets control the ones that cannot be prevented.

The attendance was split with patients, healtcare providers, caregivers, nurses, RT, State Health Dept., equipment suppliers, etc. I really want to see if I can find out how many Patients were there because I don't think that many. It was not advertised well and we had 12 in attendance from my rehab. One person came as a post I made on CI forum. That was only by a mistaken form my husband brought home for me when he saw his Pulmonary Dr. He wasn't sure which one I wanted and he brought two and one was about the Conference. Very poorly advertised.

I was diagnosed Aug. 2002 and a lot is happening since then. If we get the awareness out and the money comes in, then we can do more 'no smoking'. There are a bunch of Baby Boomers that do not even know they have this disease yet. Rehab can keep people out of the hospital and especially if it also includes classes for education.

Another is earlier spirometry testing and educating PCP's more. In the past Pulmonary Rehab was not recognized. PCP cannot keep up on everything and often hand out inhalers and that is it.

I guess I get carried away but I really believe in this stuff. My rehab has a group getting together on our own in a couple weeks to figure out how we can start a good support group. There will be at least 12 of us so far and we have one RT behind us and pretty sure have another.

Good luck.

[maryaz]

I have one more suggestion. This just came to mind because of something someone recently shared with me.

Altho, I want to get off the smoking part, I think it would be excellent if someone that could write good, could write up about smoking. Telling how it was okay and fashionable and in the movies and the 'in thing'. Then it was bad and many were hooked. Cig companies got us more hooked. It is harder to quit than drugs, including heroin.

I had Phil sort of write about smoking one time and I had this in mind but that was not how he took it and we just never had the chance to get back to it and discuss it.

If we just had a handout, to shut people up that keep putting in people's face and sometimes innocent people.

[dray]

Speaking for Jackie, I know some of her feelings:
1) Early detection at the GP level a simple spirometry should be available at the family doctor's office.
2) Getting the message out to rural areas that there is hope and ways to manage COPD.
3) Proper medications available to medicare, medicaid, and social assistance persons. Symbicort and Spriva are a minor cost when compared to hospital stays due to an excerbation. Discussions these past two weeks with respirology people has made me realize even they are frustrated as they know beyond relief of symptoms to the patient there are cost saving measures to the heathcare system.

These are a few of her agendas, but I am sure after this hospial stay she will have alot of more indepth points for discussion

[wendyco]

I have to echo what Jackie would say.....early detection is so important and most GP's do nothing about it.......

and MOST important to know when 1st diganosed it is NOT a death sentence.........

[cocojax]

Early detection and proper care given at that time. Not the attitude that some GP's have, you smoked (I had quit 6 years prior to being diagnosed) now you have COPD oh well there is nothing more we can do for you....Most of what I know now and the treatment I am receiving is from my respirologist, he is great, and this site.
Medicines should be paid for by the government if people do not have coverage...

[Joyce7]

I agree with all these wonderful suggestions and hope and pray they come about. It would be so good to have a booklet or pamphlet to hand out informing people about copd. I am like everyone else...when I started smoking, I didn't think it would hurt me. Young people today know it will hurt or kill them but choose to do it anyway. It is so highly addictive. Either way, copd is copd and needs money and attention...Joyce

[maryaz]

The education has to be available with these suggestions. I got a really good phamplet when I started rehab but don't think it is available anymore. I will find it and check it out. Even as a smoker, it would have gotten my attention.

Early detection has to have something more provided from the GP's so the patient takes it serious.

Joyce; I think the young think they are invincible. My husband and I never figured we would really live to be real old.

It is not just the rural areas but it is more difficult. I am in a huge metropolitan city and run into all kinds of people that know nothing. I heard that mentioned at the recent conference. I think the RT's are for us and great to work with.

I still say REHAB, REHAB, REHAB. It saves or lengthens lives and makes them easier to live with COPD. Support Groups because people don't all do the Internet. Read Joyce's Exercise posted for today. The emotional support of people if you read my reply to her about our thanksgiving buffet.

Dave, Jackie must be feeling better. Hope she is soon home. I feel won't be long. This is all so exciting even if I don't live in Canada. It is because things are happening. Jackie, for one, helped make it happen.

Thanks to all of you here that were working with her.

[LindaNY]

wendyco said:

I have to echo what Jackie would say.....early detection is so important and most GP's do nothing about it.......

and MOST important to know when 1st diganosed it is NOT a death sentence.........

Exactly!! I know the family practice group I use for my health care don't do a thing to dx. it.

[chrisw]

This is my submission to the LHF. I hope it covers what you have suggested.

I am answering this for Jackie Whitaker as she is in hospital.

1)Doctors need to diagnose COPD early early by pulmonary function test, or as a minimum spirometry, whenever there is recurring shortness of breath or cough especially in smokers and ex-smokers and those who are likely exposed to suspicious environmental conditions. The G.P.s need to prescribe by guideline and include a written prescription for exercise or referral to pulmonary rehab. and learning materials need to be given (not just available in the office!) to the patient. Early treatment can slow or stop progression and by doing so reduce health care expenditures.

2) When all COPD guidelines emphasize pulmonary Rehab as one of the key treatments for COPD from the early stages, why are ways to make it more readily available, especially in areas away from the major cities, not being aggressively pushed? Pulmonary rehab is proven to save money in reduced hospitalizations.

3) When evidence shows that "Wellness" is critical to health.
That supplemental oxygen is the only treatment proven to extend life for those with COPD.
Evidence also shows that ambulatory oxygen is necessary, for those with COPD who desaturate below 89% SaO2, to exercise at a level needed to achieve "wellness".
Data from the NOTT study shows the most benefit of oxygen is for those who are "high walkers" but that the benefit does not realize until patient have been on oxygen for about 500 days.
Why is it that the provinces are not funding ambulatory oxygen until oxygen saturation during a short walk test drops below 80%? This is a level known to cause secondary pulmonary hypertension and cor pulmonale. Note that Medicare in the US is starting research in the benefits of raising the prescription guideline from "below 89% SaO2" to "below 92% SaO2" for rest AND exercise.
Exercising COPDers do not get hospitalized as frequently.

4)Do not waste time talking about smoking - anyone attending any meeting about lung health knows that smoking is bad. COPDers are sick and tired of having the evils of smoking rammed down our throats and way too many of us have been refused effective treatment because "we did it to ourselves" in spite of the fact that there are both genetic and other environmental causes.

5)Spend money on publicising COPD. That it is preventable, and treatable, and not a death sentence when treated correctly. It needs to be as well known as strokes, heart attacks, cancer and diabetes. Knowledge of the disease is the greatest force to slow down progression and save money.

[John]

Excellent Chris !; I myself never heard of copd before being dxd .

[LindaNY]

Chris, if it' alright with you, I am going to print that out and give it to several of my physicians. It's excellent.

[chrisw]

Linda,
You are welcome, and I am flattered!
Chris

[cocojax]

Way to go Chris, thank you for presenting it that way....I was the same as John never heard about COPD until I was diagnosed....

[maryaz]

Chris; That is absolutely so good and I almost cried reading it. If you don't mind Linda taking it, I am going to also. I think I am going to be getting more involved here and can use these ideas. Only thing is that I wonder if Linda is thinking of actually using your writeup, that maybe credit should be shown for the writing. I'm thinking that Jackie might think that way but not sure.

It is to all of our benefit to have things like this circulated. I think I have to do some writing and so figure this makes a good guideline.

The reason I said I almost cried is because I feel so many of the people that should be listening to us are just hardheaded and don't get it. You got it right there in writing. Like no one has listened up until now.

I loved the smoking part. I know it is okay to work at the prevention and especially of the kids but that is not what the people with COPD are trying to do right now.

I didn't know who chrisw was when this forum started but I know now. Phil is smiling down here today too. He would be proud of you all.

ONE MORE THING: Just keep this in mind. I notice even more this year that the word COPD is getting really confusing to people and maybe need a big blitz on what it is. I don't know. I have heard people say that their Mother was dx'd with emphysema few years prior but okay now because they just got COPD. People are getting more confused and it seems to coming from the doctors. I don't get it.

[chrisw]

Hi Mary,
I am honored that you, or anyone else would want to make use of it.
However I think you are right about saying where it came from, so I suggest that you simply say that it came from COPD Canada Patient Network.
Like they used to say - no names, no pack drill
Hoping that Jackie can get on-line tomorrow and back me up on this!!!

Chris

[the bear]

Hi all; Wonderful suggestions Chris. Each and every one need attention.
Also needing attention that COPD is not a provincial or national priority it is a world wide problem. There is absolutely no difference between a Chinese or Eastern Indian and an American, Mexican or Canadian having this disease. We all suffer the same limitations in our daily struggle.
Our national government in Canada saw fit to download its responsibility of universal healthcare to all Canadians to the provinces. The provinces have in turn downloaded their responsibilities to regional authorities.
There is just too little accountability and too much finger pointing at who is at fault. The whole system is crashing because of far to many chiefs and not enough Indians. Too much administration and too little work to educate and help those with any chronic disease.

Our hospitals just worry about the money. The bottom line and keeping within their budgets. To heck with the patients needs and wants. They keep cutting back nursing staff, cleaning staff and so many other essential services. Infection is rampant in hospitals because they do not insist on cleanliness, and they do not monitor who comes and goes properly. Reason, not enough staff. Why?

Would not money slated for health care be better spent on prevention. Does the old saying " An ounce of prevention is worth a pound of cure" not mean anything anymore??

The provinces and territories are floundering and falling further and further behind in trying to keep up with the demand for better, newer and more treatment options. But the funding is not there and neither is a national directive or plan.

Our national government is boasting of a millions of dollars surplus this year. Why not give it to the people who need it most the sick and ailing??

The National Lung Framework is just a start. We all have to get involved and stop being so compacent. If you do nothing, expect nothing. Each of us has to get involved in advocacy and let our leaders know how things have to change.

Stop spending so much or killing others in far away lands and start saving the lives of those here at home. bear.

[the bear]

Another concern of mine is the unnecessary duplication and the application of really unnecessary procedures.

Why is it with any hospital visit you have to waste so much time answering the same questions they asked you on the last visit? Espescially when you are there for the same medical condition, such as being SOB on a bad air alert day. In this day and age of cumputers and instant technology why can there not be a central data bank with every aspect of your medical history on it???
So much valuable time is wasted on this.

Also why is it on every visit they stick you with an IV line??
These must cost money and apparently they are just in case they need immediate access to a vein. How much time is saved??
These lines are a pain in more places than the arm they are put in. They limit your mobility and need constant attention to keep them clean and free of clotted blood. Again more wasted time and taking a nurse from something more worth while.

So to sum this up a total waste of time on duplication and unnecessary procedures. A waste of resources (the nurse) and money.

Also the many repetitious tests that are administered on each visit. A cat scan, an x-ray, an EKG, blood tests etc, every time you go. I need my blood tested every month to check my INR. Why is there not a central data bank that the hospitals could access?

When you get right down to it. It surprises me that our health system works at all. Barry.

[maryaz]

Wow, You guys are good! I am just so thrilled because I am on the pages you are and I don't find a lot of people with me. Too bad I don't live in Canada. Too cold. Bet its beautiful.

Bear, It is late and I am tired and won't get all my reaction to your two posts but part of it I will.

Your first post, I agree with you. I also agree with your second one but would add to it. What you post in the second one should apply all over and not just COPD in this case.

These things seem to be being done 'by the book' (expression only). What is it about change. Procedures start for a reason and may work good for a long time. There comes a time when 'Change' is needed (I am beginning to sound like a da_ _ politician, OMG). I believe that applies to what you are talking about in Post 2. Now days if you ask someone, "why are you doing that?", their reply is "because that is what I am suppose to do". Duh! (sarcastic)

I keep saying that with our (USA) government and please don't anyone take this politicial, taking sides or anything. It is general. I think we need to throw out the way we are doing things in the Government, Congress, whatever. Keep what the country was founded on Constitution, Bill of Rights etc. Don't change what we are built on. Thru the years lil by lil procedures really got changed and it is time to throw everything out and start over.

Everything is bigger and technolgy so much different.

We would have to come up with the ways to do things. You need some kind of guidance. Somewhere in the governments, all these special areas are created now. I am not going to say anymore and hope you realize what I am saying. I have said this about government for years now. I apply that to the hospital procedures now. Make a new book!

[the bear]

It is also worth mentioning that even my own doctor, my general practioner does not even have a spirometer in either of his two waiting rooms. Not the outer waiting room but the inner ones you go to for a more thorough examination. I keep chiding him about this but there is still no spirometer as yet in either room. I peeked.

IMHO a spirometer test should be given to any adult that goes to the doctor for an annual physical. They check every other system, why not the lungs?? Any male knows the dreaded DRE, the digital rectal exam to check the prostate, why do they not give a spirometer test too??

It is up to you insist on a PFT test, a pulmonary function test, if this does not measure up to the normal than a consult with a respiratory specialist is very advisable.

It is also up to us to educate our doctors about the fact that a diagnosis of COPD is definitely not the end of the world. We can live for many, many years with proper medication, diet, exercise. We must insure that we get the proper medications even oxygen therapy if it helps us. It will definitely help the heart to pump fully oxygenated blood into our system. It will also enable our hearts to pump with a lot less stress and strain than if it is starved for oxygen.

IMHO a lot of needless deaths occur because the heart, not getting the fully oxygenated blood it needs, just blows up. So the primary cause of death is put down as heart failure when in actuallty it was the lungs that failed.

[the bear]

IMHO even though the number of people smoking is decreasing, COPD diagnosis is increasing. Could our atmosphere being poisoned by pollutants be a contributing factor??

[maryaz]

Hi Bear; I am on the same pages with you on most of this. I have spent over 5 years in Pulmonary Rehab. Had a great teacher for a lot of what I learned. It was the RT there when I started. He did move on to another job this year.

He had always said the same as you about the Spirometry. Actually we were sitting together at the Lung Assn Summit that I attended this month and somehow think we might have got rooked into doing something related to spirometrys. If so it would be along the lines you are talking about with regard to the doctors. Just not clear on the commitment yet if it was set in stone. I never had my hand up for this, as I have other issues but I didn't deny it either.

Just wanted to tell you I agree with you.

I was talking to my 37 yr old son tonight about COPD. For the first time I think he is listening and/or getting it. I was so glad some of the stuff here had been posted and I had the Lung Summit behind me because it gave me good info for sharing. He wants to help promote in his little way. He is very busy but I will accommodate some of his request. I tried to change the subject at some point and found he was really interested. I didn't want to keep him from calling by talking about my health too much.

There is more to all of these stories but cannot explain it all or would write all night. It is like a 'God' thing to me with so many things falling together. Hope I am not reading it all wrong. I am getting excited.

[LindaNY]

chrisw said:

Hi Mary,
I am honored that you, or anyone else would want to make use of it.
However I think you are right about saying where it came from, so I suggest that you simply say that it came from COPD Canada Patient Network.
Like they used to say - no names, no pack drill
Hoping that Jackie can get on-line tomorrow and back me up on this!!!

Chris

That is exactly what I planned to do.
These doctors need to know that there are people and orginizations out there dedicated to helping others with this disease.
Hopefully they can inform their patients of groups like some of ours so these people can get the help and support that they need.