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Author Topic: 'I'm not a prisoner' pleads dialysis patient  (Read 5664 times)
okarol
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« on: November 27, 2008, 07:48:17 PM »

'I'm not a prisoner' pleads dialysis patient
By Jenna MacCulloch
Published:  27 November, 2008

A MAN who has been on the transplant list for four years and needs dialysis three times a week says he is treated like a prisoner.
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Malcolm Morrison (42), of Beechwood Road, Inverness, wanted to enjoy a weekend away in Newcastle – but his plan was scuppered after a hospital there refused to treat him.

He asked Newcastle Freeman Hospital if he could book a time for his dialysis on one Friday in November.

But his request was flatly denied, despite the National Service Framework on renal services stating that dialysis is available in all parts of the UK on the Department of Health website.

Mr Morrison has been left bitterly disappointed by his experience – and says he would have more rights if he were in jail.

He said: "Living with renal failure is tough at most times, as anybody will tell you.

"The truth of the matter is I could go into hospital one day and not come out alive. That's the reality of my situation. Dialysis puts a tremendous amount of strain on the heart.

"I am the one who has to have treatment, but just because I am a patient should not make me a prisoner in this day and age. But that is exactly what I am – my NHS hospital appointments dictate my life.

"I have been waiting for a transplant for four years, and so far there has been no indication of when that might happen. So I have to dialyse three times a week, and because of that, going abroad is out of the question because of the cost involved.

"However, I don't think the occasional break in the UK is too much to ask. We are told that if we book in advance, we should be able to secure a slot to dialyse in any UK hospital."

Mr Morrison started to plan a long weekend in Newcastle a couple of months back.

He said: "Ideally I would travel to Newcastle on the Thursday and dialyse at Newcastle Freeman Hospital on the Friday, giving me Saturday and Sunday to enjoy.

"This trip is very important to me. I'm a war buff and my friend has an original WWII jeep I want to go and see. I don't think I'm asking too much."

Malcolm Morrison says he can't leave his home for a long weekend to Newcastle because he can't get dialysis elsewhere in the UK. Iona Spence

Mr Morrison received a letter from the renal tsar Donal O'Donoghue, who oversees renal services in the UK. The letter said Mr Morrison's case has been referred to Beverly Matthews, who is part of the NHS kidney care unit.

He added: "She has since informed me there was no chance of getting into Newcastle Freeman, but she was trying to get me to a hospital close to the area I'll be staying.

"By close, that probably means about three quarters of an hour away, and of course I will be liable for the travel costs. And I'm not rich, like anyone who has renal failure. I'm on benefits."

Mr Morrison is now trying to arrange his weekend away in December, but is not holding out much hope.

He added: "This is an important trip to me, but whether I get to go is a different matter. I'll just have to wait and see. My life is not in my hands."

In a letter addressed to Mr Morrison on October 10, Donal O'Donoghue said: "The National Service Framework for Renal services makes clear that the ability to dialyse away from home, for holidays or other reasons, is important to kidney patients.

"We are, however, aware that some patients experience difficulties arranging temporary dialysis away from home in the UK, in popular holiday destinations and at peak holiday periods or in areas where the dialysis services are under particular pressure.

"As well as measures to encourage increased dialysis capacity, the department has set up a working group to look specifically at ways to improve patients' experience of dialysis away from their home units."

j.macculloch@highland-news.co.uk

http://www.highland-news.co.uk/news/fullstory.php/aid/4761/_I_m_not_a_prisoner__pleads_dialysis_patient.html
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Zach
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"Still crazy after all these years."

« Reply #1 on: November 27, 2008, 08:19:44 PM »

So much for socialized medicine.
Go West young man, go West.

Glad I'm in the U.S.A. where I can travel.

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
RichardMEL
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« Reply #2 on: November 27, 2008, 09:10:30 PM »

Definitely similar issues here if you're under the public system. Yes, they pay for everything, but if you want a holiday spot at anywhere even approaching a popular destination you aparently have to book a year in advance. Private clinics are easier to get into, but you need insurance to pay for that - which not everyone has access to - otherwise it's like $600 a session.

I stay at home biding my time for a big trip - when I can hopefully eat and drink and enjoy it properly!!!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Wattle
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« Reply #3 on: November 27, 2008, 09:43:26 PM »

And I'm not rich, like anyone who has renal failure. I'm on benefits."


I have renal failure and I am NOT on benefits. I work. I pay tax, therefore I help to pay for my Dialysis. I also pay for private Health Insurance. I don't get discounts on my meds. My husband and I struggle to pay for my health problems and raise two children.

« Last Edit: November 27, 2008, 09:54:54 PM by Wattle » Logged

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RichardMEL
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« Reply #4 on: November 27, 2008, 09:57:30 PM »

I'm with Wattle (well no, not in THAT way  :rofl;) - I work (well, I'm posting from work right now!! :) ) and I pay tax.. but I'm more than happy to pay my tax bill when I think of the $$$ the health system pays to keep me alive via dialysis and subsidised meds. I also realise not everyone is or can be in this position so I am pretty happy that I can be and that our health system takes care of me in a pretty good way all things considered.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
rose1999
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« Reply #5 on: November 27, 2008, 11:14:42 PM »

And I'm not rich, like anyone who has renal failure. I'm on benefits."


I have renal failure and I am NOT on benefits. I work. I pay tax, therefore I help to pay for my Dialysis. I also pay for private Health Insurance. I don't get discounts on my meads. My husband and I struggle to pay for my health problems and raise two children.


Yes I didn't like the way that read either but there is a full stop after rich and I don't think he meant all renal patients are on benefits, just that they aren't rich.  My Dad is a pensioner but is not eligible for benefits AND has to pay his own taxi fare to hospital (could have transport but the time it takes and the way they drive was making him ill).  He can't have a holiday as there are no dialysis units in Wales (which we be as far as he could travel) that can take him, they are all too full.  Dr O'Donoghue talks a good talk but in reality it just isn't happening, I mean Newcastle is hardly a busy holiday spot!!  Perhaps if we had a few MPs on in center dialysis they would change their tunes.  I did invite Dad's MP to spend a day with him to see what it's like but he chose to ignore that invitation!
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Ken Shelmerdine
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« Reply #6 on: November 28, 2008, 05:38:38 AM »

So much for socialized medicine.
Go West young man, go West.

Glad I'm in the U.S.A. where I can travel.

8)

Because you can afford to pay for it. You may as well have said 'I'm alright Jack'!
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Ken
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« Reply #7 on: November 28, 2008, 07:38:23 AM »

So much for socialized medicine.
Go West young man, go West.

Glad I'm in the U.S.A. where I can travel.

8)

Because you can afford to pay for it. You may as well have said 'I'm alright Jack'!

Not at all, I'm on Medicare.
But because the U.S. government doesn't restrict to number of dialysis facilities, there are seats (beds) available for travel within the States.

8)
« Last Edit: November 28, 2008, 07:41:31 AM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Rerun
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Going through life tied to a chair!

« Reply #8 on: November 28, 2008, 02:40:20 PM »

I have had a hard time finding a facility who will take me when I want to go to Oregon to visit my niece.  The one in Lebanon is always full.  The one in Corvallis could take me one time so I ended up on the door step in the Albany clinic.  This was all with 4 weeks notice and all my tests and paper work done.  It is not always easy.

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Zach
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"Still crazy after all these years."

« Reply #9 on: November 28, 2008, 09:09:05 PM »


It is not always easy.


You are absolutely correct, it's not easy, especially in smaller cities.
But it is doable.

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
G-Ma
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« Reply #10 on: November 28, 2008, 09:21:17 PM »

Zach, please give us your secret..but that won't help me anyway as the insurance company that pays my disability has told me I can't leave my home without "permission" from them so add another link to that chain "and they don't return phone calls".
Ann
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
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Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
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Wattle
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« Reply #11 on: November 28, 2008, 11:24:06 PM »


But it is doable.

8)

I am sure you just have to book in advance. Way in advance in some circumstances. But I agree with Zach it is doable.
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Zach
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"Still crazy after all these years."

« Reply #12 on: November 29, 2008, 10:08:36 AM »


Zach, please give us your secret..


Here's one travel source for the U.S.A.:
http://www.dialysisfinder.com/

Here's another source, from Fresenius:
https://www.ultracare-dialysis.com/engine/renderpage.asp?pid=s0100

8)
« Last Edit: November 29, 2008, 10:16:21 AM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
kitkatz
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« Reply #13 on: November 29, 2008, 05:50:40 PM »

Zach can you post these links in the travel section.
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Take it one day, one hour, one minute, one second at a time.

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Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #14 on: November 30, 2008, 03:46:30 PM »

So much for socialized medicine.
Go West young man, go West.

Glad I'm in the U.S.A. where I can travel.

8)

Because you can afford to pay for it. You may as well have said 'I'm alright Jack'!

Not at all, I'm on Medicare.
But because the U.S. government doesn't restrict to number of dialysis facilities, there are seats (beds) available for travel within the States.

8)

OK Zak point taken. What exactly is Medicare?Is it some kind of second tier welfare health system? Is it privately owned or state owned and how much do you have to pay towards it and most importantly can you have any kind of medical procedure undertaken regardless of the cost for example major surgery? What level of health and social care does it provide to the elderly or infirm or to people with chronic psychiatric problems?   
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Ken
Zach
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"Still crazy after all these years."

« Reply #15 on: November 30, 2008, 08:46:37 PM »


What exactly is Medicare?


See Medicare (United States):
http://en.wikipedia.org/wiki/Medicare

 8)
« Last Edit: November 30, 2008, 08:49:33 PM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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