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Bluepete

Just to recap a bit of history.

2003 Told by Neuro that invasive vent is not available in the UK. Also told you are less likely to have breathing problems if you are bulbar onset.

In 2004 started asking about invasive vent at respiratory clinic and given a very black picture of this option.

Later my GP wrote on my behalf to be transferred to a hospital more sympathetic to my request vent by way of trache.
Soon after a different approach taken and current respiratory clinic said they would support my request.
Quality of life issues discussed, also care package needed and costed.
Trache agreed once funding for care package in place.

Transferred to local hospital to carry out trache as health care trust would be less likely to fund this if the hospital was out of their area.

Funding and care package agreed in principle by health care trust.

Today’s meeting at local hospital where tracheotomy would be carried out:

Doctor: “I have phoned round many hospitals in the country and other that Brompton a trache. is not done for people with mnd.
I cant understand why you need it, can you explain.”
Great start eh, back to square one if I could have thrown something at him I would have. We all know invasive vents are not usually done in the UK.
Then we get into the fact that intensive care ward might not accept me as not used for someone with my particular needs or reasons and the other wards are not capable of caring for someone with a trache who also needed ventilation.
Bloody hell my wife could come and connect the vent up for them so pathetic !
Well now we go down the road of chest infections and if these kept happening would I want keep using intensive care.
Then onto at what point of would I want treatment withdrawn if no chance of recovery.
God I have already gone through Living Will already.

In 6 weeks I see him again but if the answer is that I cannot get access to an intensive care bed I presume they will not agree.
The whole thing is totally pathetic, stupid, and cruel to both me and my wife. I do believe that one reason for part of this over the top approach is down to the baby in their hospital who is in dispute with parents regarding removing life support.

If I die through breathing packing in I will hold nhs responsible, not that it will do me much good. It is enough to suffer with MND without the added stress brought about by this.
I am now feeling stressed out and down as a result of a system that tries to put barriers up against anything that does not fit into their normal practice. ( Their norm, and dares to challenge their opinion, some think they are Gods)

The thing is so stupid when you think that only intensive care nurses and my wife can cope with my needs and not nurses on other wards. Crying or Very sad

For those visiting the Forum who are on vents or have loved ones on vents from other countries, the battle to have input into medical choices in this country is a large one.
It has taken me nearly two years to get to this point and having got invasive vent agreed I am now faced with doubts due to a bias againts my reasons and needs. Bashing head against a brick wall

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It's not the years in your life that count. It's the life in your years.

Rob · Posted: Sat Apr 23, 2005 5:08 pm Post subject:

I'm so sorry to hear that Pete. I know you have worked long and hard on this.
It's so cruel for them to raise your hopes like that and then dash them,I am so angry for you!
I wish that I could say something that would make you feel better but can't,so I won't even try.

All I can say is that my thoughts and prayers will be with you and your family.

You know that you have my complete support on this, anything I can do to help?
Nasty emails to health authorities a specialty. Wink

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"There is no such thing in anyone's life as an unimportant day."

oldgill · Posted: Sat Apr 23, 2005 5:27 pm Post subject: Me and the Uk invasive vent farce

You have my every sympathy, I can't begin to imagine how gutted you both must be.

skode · Forum Regular Joined: 18 Feb 2005 Posts: 104

PETE
Sorry to hear about your predicament. Talk about adding insult to injury – this must be very frustrating.

I’m currently on a BIPAP and I’m no authority on ventilation, but I read an article by DR Bach about a different type of ventilator — a volume-cycled device, as opposed to the BiPAP, which is pressure-cycled. It’s non-invasive and perhaps it may be a viable option for you.
http://www.mdausa.org/publications/Quest/q105trach.cfm

Take care and I hope everything goes well for you.
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"A long life may not be good enough but a good life is long enough... wish not so much to live long as to live well."

Pat

Morticia · Posted: Sat Apr 23, 2005 9:35 pm Post subject:

Where can I send a moaning email? Gees I thought we had a good health authority guess not. Evil or Very Mad

Hugs for you Pete
_________________
"When you wanna give up and your hearts about to break remember that your perfect god makes no mistakes "

BON JOVI WELCOME TO WHEREVER YOU ARE

Jeannie · Highly Active Contributor Joined: 28 Nov 2004 Posts: 2299

Pete I'm sorry to hear you hopes have been dashed once again, I dont know whether it would be worth you contacting Papworth as I know they perform trachea for pals, maybe the Dr's there could write to you Dr ????

thoughts & prayers are with you.
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Best wishes

Jeannie

If I fail, if I succeed at least Ive lived as I believe.

"As I grow to understand life less and less, I learn to love it more and more."

ALS onset June 2000, dxed July 2001, I am 32 yrs old.
Living and loving everyday regardless of ALS
I'm singing and dancing inside!

Wayne · Highly Active Contributor Joined: 28 Nov 2004 Posts: 1955

Pete,

Your situation is totally unacceptable & one you could do without.
Have they totaly ruled it out.? or is it a case of Psychological evaluation on their part.

Anything I can do too help I will.
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All of us could take a lesson from the weather.....It pays no attention to criticism.
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"Be yourself because everyone else is taken"

Bluepete · Posted: Sun Apr 24, 2005 11:28 am Post subject:

Then we get into the fact that intensive care ward might not accept me as not used for someone with my particular needs or reasons and the other wards are not capable of caring for someone with a trache who also needed ventilation

No as I say the doctor says he has to convince the other doctors associated with intensive care. As I stated above ( might not ) so it could still happen. The problem is the doubt that this causes and the stress also, it just should not happen in this way having been told I could have it in the first place.

Thanks for your support everyone.
_________________
It's not the years in your life that count. It's the life in your years.

Bluepete · Posted: Sun Apr 24, 2005 11:29 am Post subject:

woops
_________________
It's not the years in your life that count. It's the life in your years.

Dave in WV · Posted: Sun Apr 24, 2005 5:36 pm Post subject:

bp,
Would the dr's there be willing to do the surgery so that you could be fitted for the trache and you be responsible for your own care and vent?

The reason I ask is a PALS here was advised by his doctor to get the trache regardless of whether he chose to vent later.Dr claimed that by shortening the airway it would make it easier for him to breathe on his own much longer. I'm not sure I buy that theory though.

Deb has seen ventilators for sale on ebay.

I don't care what anybody says, you don't need a nursing staff 24/7. You don't need nurses period! I have been on a vent since March 93 and my wife, Deb, has been my sole caregiver the past twelve years. Just March of this year Deb went back to work full time. So, before Deb leaves for work she puts me in my power chair, gets me hooked up online and she's off to work before 8am.

Deb works Mon-Fri 8a-4p. My 67yo mother stays with me in case I need suctioning. Even though Mom does want pay we always pay her on Friday anyway and the extra money comes in handy for her on weekends. If for any reason Mom can't make it, we have a 25yo single mother of an 11mo baby who will fill in for Mom and only asks for $15/day. She can bring her baby here, do her laundry here and eat 2-3 meals here on any given day.

Hope this helps you a little, bp. It's really a shame that you have someone telling you that you won't have any quality of life despite of how you feel about it!

Life is good!
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Dave in WV
Life really is an adventure!
Don't get so caught up in dyin that you forget to live...
Today is the tomorrow you worried about yesterday

Magic · Regular Contributor Joined: 23 Nov 2004 Posts: 253

Anonymous · Guest

Peter I would be willing to send letters with pictures as would many of your friends. My respirologist can not believe your situation. What about the kings college group you helped?
All the best

Chris

Al · Posted: Wed Apr 27, 2005 11:27 am Post subject:

Hi Pete:
really sorry to hear of your predicament. We talk about advances in NIVV and PEG, which have all helped, maintain life or quality of, but when it comes down to the nitty gritty of the next step forward i.e trach, everyone runs a mile. Resources need to be there for this stage. Unless the NHS takes its head out of the sand, it will never cope with the more challenging situations.
I apologise now if this sounds a bit like 'sucking eggs', but have you said to them this is what I expect, it is up to you to find a way of delivering it. The NHS wants to run its affairs like a business, therefore they are the contractor you are the client. They are there to offer you a service. There is a time to be bloodied minded about this and kick some ass! Sorry getting into my old contracting habits! Consultants hate their power base being challenged, but sometimes they need to be made to look out of the circle.
I'll shut up now. Will you be coming to the Spring MND conference in Basingstoke? There should be scope to air your views and it would be great to meet you there.
Thinking of you Pete
Alistair

Bluepete · Posted: Wed Apr 27, 2005 2:12 pm Post subject:

Thanks Al the only reason I have got this far is down to me spelling out my wishes and expectations.
It is really down to attitude of proffesionals you come up againts, it was very clear that the doctor did not approve of my choice. The question about repeated chest infections was all about blocking intensive care bed. It was said in so many words that that intensive care was use to treating people who would get better, not people as in my case who will get worse.
Also there seems to be a policy that you are never given the funding fully for your care package, in other words you ask for 5 days cover but expect 3 or 4. This should not happen if your needs have been assessed but it does. My wife has also been told that the health authority has the power later on to withdraw funding if it becomes not viable for them. Legally they cannot withdraw funding however if my needs can be met, which they would be providing I do not get other medical complications that cannot be managed at home.
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It's not the years in your life that count. It's the life in your years.

Jeannie · Highly Active Contributor Joined: 28 Nov 2004 Posts: 2299

What gets me is that Ive heard/read many stories about spinal cord injury patients going on vents and staying in hospital since there accident for 2 yrs onwards Rolling Eyes

What the difference in there quality of life than a pals ?
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Best wishes

Jeannie

If I fail, if I succeed at least Ive lived as I believe.

"As I grow to understand life less and less, I learn to love it more and more."

ALS onset June 2000, dxed July 2001, I am 32 yrs old.
Living and loving everyday regardless of ALS
I'm singing and dancing inside!