May be a small step forward?

[Alyoop]

I gripe and groan about the laws in countries like NZ, Australia and UK, regarding the absence of choice, when it comes to venting a person with Motor Neurone Disease.
I really want to try and change it. Not that I have any idea how?
I just Sat down with my neurologist husband and talked about it. Until I came on this forum, he had no idea that any countries allowed MND sufferers to go on ventilators. I was shocked!

I talked today about all the wonderful people on here that have a " voice". Some of whom are on ventilators. I talked about Liz and her love with her PALS, happening after he was on a ventilator. He listened and said that he would like to help me change the wat MND is viewed in relation to quality of life. At the moment he admitted, a pals QOL is decided by the doctor, not the individual, not the family.

When I asked Why do we not offer it here, he said because years ago we followed the lead of UK. That is a ridiculous reason.

I can't believe he not only listened, but offered to help it change. He AGREED that it should not be the choice of the doctor. I am not sure if we can make a difference, but I have HOPE.

This has been made possible by this marvellous forum, the strong people here. The people making the choice that best suits them and their Whanau.

Thanks everyone
Aly

 

[HelenL]

Aly, that's amazing that your hubby is onboard with you on this... and that he didn't even know that here the patient has the choice, not the doctor... guess that's why we pay the big bucks here, no one ever wants to call it quits. So maybe some of the folks here on vents should get videotaped answering certain questions that you come up with, and present your findings to your government somehow? Your own clinical study of sorts...

 

[TedH5]

Hopefully you will be a driving force behind change...Venting and QOL should be a personal choice for the patient.

 

[LizT]

So there's a chance that I like your hubby... just a chance

 

[joni51]

Aly that is great that he is on board with you..Pals should definately have a choice..

 

[momofsixkids60]

Aly; like I told Ted, it starts with 1 person and already you have two!

 

[trfogey]

Aly,

If you really want to "meet" some vented PALS who are living with ALS and have been for several years, you really should join F a c e b o o k or Patients Like Me. I can introduce you to all kinds of vented PALS in those venues who will really open your husband's eyes to the PALS side of the vent/no vent decision. No offense intended to Hal (halfin) or Liz's PALS, but have we really had any truly active vented PALS here since Joel left us? My apologies if I've missed somebody, but no names are leaping into mind here.

Doctors, especially neuros, have an absolutely enormous influence on this decision. Any neuro who thinks that he/she isn't the single biggest influence on that decision have a case of denial worse than most of the twitchers in the DIHA forum have about their health anxiety. And passing the buck to the politicians or health system bureaucrats or insurance companies is simply just so much bovine excrement. They manage to talk those same "obstacles" into getting them plenty of fancy new technological toys to play with, don't they?

 

[Alyoop]

I have joined facebook and patients like me, so I really need to learn to use them.
I need a good plan of action and a place to start. If you could give me some contacts it would be great. I need to get as much info as possible. Pros, cons, costs, talk with respiratory physicians etc. Hubby can help with that.

Thanks or your offer of help Allen.

I imagine an individuals neurologist would have a huge influence on their patients decision. It's like that with all aspects of medicine.

 

[Sequoia]

Go for it Aly! Will keep this in my prayers!

 

[Gentleman Jim]

This really does speak to more issues than one's right to choose.
One of the arguments for motorcycle helmets says that you have
the freedom/right to not wear a helmet, except for when you get
hurt, the extra expense is not to be put on others.
Studies show that people who do not wear a helmet have a tremendously
increased chance of long term disability, and or injury, etc. etc...
Increased insurance premiums. On and on it goes.

I, myself do not subscribe to the argument, even though it does have merit.

One added thought, "It is easier to make a decision when it is someone else
paying for it." You mark my words, Obama will effect this freedom as we now
know it. That is only one consideration. If you jump that hurdle I will give you
another one.

 

[notme]

Aly, can you guys get the Trilogy there in NZ or for those that are in UK or Aussie Land? Wouldn't the non-invasive vents help some pals that can't get trache'd if they want it?