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View Full Version : Tracheoscopy - why not and where's the debate?



Alanwig
19th June 2011, 17:15
Hi All,

If you've read my hello or previous posts you will know I have a life long friend Jeff, who has ALS diagnosed in September 2010 with a prognosis of 12 -18 months of life.

He is currently having a great debate with his MND Consultant, Pallitaive Care Consultant, Respiratory Nurse and others over a Tracheostopy, which he feels would substantially extend his life but is being advised against and refused by the NHS.

If he maintains heart, brain and functioning speech his feeling is he can have a realistic quality of life. He has means to generate an income, he can appreciate - his family, music, conversation, books, film and TV.

Is he right? are there other complications with ALS he's not considering and why is there no great debate about Tracheoscopy within MND sufferers and the association, if it can extend life, in the US it appears to be much more widely used.

Has anyone experience of a Tracheoscopy as a patient or carer, has anybody had this done privately if refused by the NHS?

Let me know your thoughts and experiences and I'll feed them back to Jeff.

luce
20th June 2011, 00:07
I would suggest you giving MND connect a call Jeff

crossolly
20th June 2011, 13:37
If you go to the MND forum at http://www.build-uk.net/ you will find several patients with NHS tracheotomies. They feel it has changed their lives for the better.

Alanwig
20th June 2011, 20:24
My thanks to Luce and Crossolly for their advice.

I'm surprised that their doesn't appear to be any wider debate about Tracheostopy within this forum, given that for some it can significantly extend life.

With best regards,

Alan

Jeannie
21st June 2011, 07:49
I attend Papworth Hospital and my consultant is more than happy to give me a trache when the time comes. It comes down to the same thing every time which is cost grrrrrrr Good luck

Alanwig
21st June 2011, 10:59
Thanks for the response Jeannie.

Jeff has been a mate for nearly thirty years and I wan't to give him the best support and advice I can.

Having spoken directly to the Hospital it would appear that the Trach has not been refused but they want to assess his condition. I think Jeff has come face to face with his mortality and doesn't like the odds, and why should he, if he thinks he can extend his life with some quality.

Keep on singing and dancing. All the best.

Alan

computatec
25th June 2011, 20:29
I found an interesting article by someone who has had the procedure and speaks very positively abou it. Here is the link:
http://alsn.mda.org/article/safe-harbor-rediscovering-life-vent

Clive

Alanwig
2nd July 2011, 00:29
Cheers Clive,

An interesting article and proof that real quality of life can be achieved post Trache.

Many thanks,

Alan

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