Abandoned by the NHS !

Canada Bob

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Jan 24, 2005, 8:55:24 PM1/24/05

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First of all I'd like to say "Thanks" for taking the time to read the
events that I've gone through in the last few months.

In May 2004 I was diagnosed with a very aggressive form of Prostate
Cancer, and told that I could have as little as 8-9 months to live,
March of 2005 seemed to be as far as I would get.

I was 56 years old when I was diagnosed, married for 34 years, in
decent health, or so I thought, until as a result of my yearly check
up a routine blood test showed followed by a biopsy showed that I had
a Gleason grade 7 {very aggressive} type of prostate cancer.

I went through emotional Hell, this brought me to my knees, I was sure
that my number was up, and I was worried sick about how my wife would
cope without me, 34 years builds a very close bond.

My GP spoke to me about the "options" including a couple of new ways
to treat PCa, and off I went initially to Stepping Hills Hospital in
Stockport to be treated by the HIFU {High Intensity Focused
Ultrasound} machine they have there. After some 5-6 weeks of tests
{remember my clock is running down fast}, I was told that I was too
far gone for the HIFU to help me, check out the link below.

http://www.thisislancashire.co.uk/lancashire/archive/2004/07/13/BENHEALTHTOP0ZM.html

At this point I didn't have a "Plan B" no reserve parachute, and I now
had even less time to save my life.

Luckily for me Dr Brown {the HIFU specialist at Stepping Hills} was
going the extra mile for me, phoning around other Specialists to see
if there was anything they might be able to do for me. Within a week
he phoned me to tell me of a Cryotherapy treatment done at Sunderland
Royal {and 3-4 other Hospitals in the UK}. I was referred there by my
GP and saw Dr Greene who advised me that they would be able to treat
me
with this freezing technique, and that I'd be scheduled for the
procedure on the 5th Oct.

Everything seemed to be going well until 3 days before I was to be
admitted to Sunderland Royal, when I got a letter from Bolton PCT {aka
Bolton Area Health Authority} telling me that "We won't be funding the
cost of this treatment, if you wish to
go to Sunderland you will have to pay for it yourself. You have the
right to appeal this decision".

At this point I had around 4-5 months left, I couldn't waste time
waiting for an appeal,
so I went up to Sunderland and paid ₤8,417 to be treated.

http://www.thisislancashire.co.uk/lancashire/archive/2004/10/04/NEWS4ZM.html

The treatment was successful, now 4 months later I have been given the
"all clear"
I don't have Prostate Cancer anymore, you've no idea how good that
feels after going though the last few months.
Once I was back home, on my feet and doing well, I began thinking
about the audacity of Bolton PCT in refusing to fund the treatment on
the NHS. Seems that as a working class bloke, I simply wasn't worth
the cost of the operation.

Maybe they forget who is paying their wages, I have worked since I was
15 {42 years now}, haven't been on the dole for over 30 years, haven't
sent in a sick note for over 25 years, not even during the time since
I was diagnosed with cancer. Yet in those years I've paid in well over
₤500,000 in NHS contribution and Income Tax, double that if you
add what we pay in purchase taxes, but let's say ₤500,000 over
42 years {at least}.

But the only time that I ask for "help", when my life is on the line,
I'm told "pay for it yourself" by Bolton PCT, pity I don't live 12
miles down the road in St Helens where they have funded this treatment
for folks who live in their town.

The NHS shouldn't be a POST CODE LOTTERY !!! a Lottery where you can
lose your life simply because you live in the wrong town ? Isn't it a
NATIONAL Health Service, where we are all treated equally, that's what
I thought I was paying into! but it's not what I got! so I took Bolton
PCT to task.

http://www.thisislancashire.co.uk/lancashire/archive/2004/12/14/NEWS4ZM.html

They took over 2 months to convene a meeting, and I was advised of the
meeting 5 days before it, and given an 88 page document of what they
based their decision on.

Can you imagine that, they took more than 8 weeks to prepare their
case, and gave me 5 days to respond to it, sound like a level playing
field to you ? Add to this that I was up against a practiced opponent,
on their own ground, being "Judged" by five members of
Bolton PCT, {few bets were placed on me winning my case}. What chance
does the average person have in these circumstances ?

I attended the meeting spoke from the heart, told them what it feels
like to have Cancer and at 56 told that you have a matter of a few
months to live, and how it felt to be abandoned by a NHS system that
I'd paid into for 42 years.

You can imagine how I felt a few weeks ago when I read that the NHS
were offering to replace the "hooks" on that Radical Muslem Cleric
{yea, the bloke who wants to blow all us infidels away}, yet the NHS
were prepared to pay ₤30,000 to replace his hooks !

Maybe he's worth almost 4 times more than me ? maybe {just maybe he's
paid more in than me} ? Anyway, after a 2 hour review the Board of
Appeal actually came down with quite a favourable response, I guess
that when you speak from the heart, and when you've been where I've
been recently then most folks can't hold a stony heart.

http://www.thisislancashire.co.uk/lancashire/archive/2005/01/18/BENHEALTHTOP0ZM.html
http://www.thisislancashire.co.uk/lancashire/archive/2005/01/20/BENTOPNEWS0ZM.html
http://www.thisislancashire.co.uk/lancashire/archive/2005/01/22/BENHEALTHTOP0ZM.html

I {innocently} thought "that was that", Bolton PCT advised me that
they would ask Sunderland Royal to refund the money, and that if
Sunderland refused then, quoteů
"Bolton PCT would consider making an ex gratia payment".

That was last week, but I now hear that Kevin Snee the Chief Executive
of Bolton PCT
has said that even though I won the appeal that he has the final
authority as to IF any refund is to be paid, and with an attitude like
that it looks like I won't get a refund.

I wonder if I'd lost the appeal if he'd have felt any obligation to
second guess, revoke or dismiss the Appeal Boards decision ?

I am sickened by the arrogance and hard heartedness of folks in Public
Office, we pay their wages, we fund the NHS, yet they show little
concern to if we live or die.

I would gratefully appreciate your support on this Petition , if you
would write to Kevin Snee at Bolton PCT to let him know what you think
is the right thing to do, his e-mail is,

kevin...@bolton.nhs.uk maybe with a cc to
carole.h...@bolton.nhs.uk

If you do write an e-mail, please request a response, so that they
can't simply delete them all, pretending they never heard from anyone,
if you don't hear back from them, you'll know they don't care and that
they are quite happy to ignore us all.

Let him know what you think, am I not worthy of the cost of the
operation, does the NATIONAL Health Service treat a man in St Helens,
Liverpool, Sunderland, Newcastle
etc etc the same as a man from Bolton, are some of us worth less than
others ?

The only time in my life I have needed or asked for anything, Bolton
PCT refused to help as far as I know I'm the only man in the UK who
has had to pay for his own treatment !
Everyone else {no matter there they came from} got it on the NHS.

I've tried speaking to my Local MP {Ruth Kelly}, but so far I've not
heard back from her. Everyone else knows what I've been going through,
it's been on the front pages of at least the Bolton Evening News, and
the Manchester Evening News, plus being written up in The Sun & the
Mirror, and also reviewed on both BBC and ITV on several occasions,
either Ruth doesn't know, nor wants to know what's going on in the
life of a constituent !

Maybe an e-mail to her might help, Ruth is atů kel...@parliament.uk

Thanks for your time spent reading this, and for your considerations,
it is appreciated and valued. As a final request, would you please
"Forward" this Petition on to everyone in your address book, I need
all the support, in numbers, that I can muster on this.

Yours Sincerely,
Bob Norburn.

Steph

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Jan 24, 2005, 9:40:08 PM1/24/05

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"Canada Bob" <rober...@hotmail.com> wrote in message
news:8435bc6b.05012...@posting.google.com...

> First of all I'd like to say "Thanks" for taking the time to read the
> events that I've gone through in the last few months.
>
>

The standard and proven treatments for locally advanced prostate cancer are
hormones, radiotherapy and possibly surgery. The NHS has no obligation to
pay for a novel and unproven treatment which has not been subject to the
appropriate clinical trials. The Canadian health service wouldn't pay for it
either.

And 4 months is far too soon to be saying you are cured, unfortunately

Sounds like the NHS looked after you very well.......

MrBlueSkye

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Jan 25, 2005, 6:46:32 AM1/25/05

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"Steph" <st...@vancouver.island> wrote in message
news:ckiJd.163182$8l.77230@pd7tw1no...

>
> "Canada Bob" <rober...@hotmail.com> wrote in message
> news:8435bc6b.05012...@posting.google.com...
>> First of all I'd like to say "Thanks" for taking the time to read the
>> events that I've gone through in the last few months.
>>
>>
>
> The standard and proven treatments for locally advanced prostate cancer
> are hormones, radiotherapy and possibly surgery. The NHS has no obligation
> to pay for a novel and unproven treatment which has not been subject to
> the appropriate clinical trials. The Canadian health service wouldn't pay
> for it either.
>

Steph why make such a polarized statement when it seems that you are not
quite so sure of your facts. If the above are the standard and proven
treatments then why did his Consultants treat him using High Intensity
Focused Ultrasound? Additionally try reading the article you are commenting
on thoroughly before issueing such stone wall edicts. The alternate
"freezing" treatment he referred to is available and funded allready in 4 or
5 other NHS hospitals and so must not be considered novel and not
necessarily unproven. Finally if some day you find yourself in the terrible
position that this man is in, I suspect that your high handed attitude as to
what treatment and funding an NHS patient is entitled to will change and you
will be the first one to scream for the funding of "novel" treatments that
might save you in Nova Zemalaya or Tierra del Fuego
MBS

MrBlueSkye

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Jan 25, 2005, 6:59:35 AM1/25/05

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Have you tried your euro MP's?

MBS

news

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Jan 25, 2005, 11:55:58 AM1/25/05

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Hello,

That sounds typical of what is happening in the UK. Maybe if you belonged
to a minority group or just made a visit to the UK deliberately in order to
be treated by the NHS you might have been sorted out far quicker. It seems
that most of us don't count, maybe we should all start kicking and screaming
like certain groups.
It happens with doctors surgerys too (once past the receptionist that knows
more than all the doctors put together), it depends on which you go to as to
whether you get referred to specialists soon enough. Even with hospitals,
there was something on the news some weeks ago about a mother having to be
taken off to a hospital some 40 miles away with a baby. Then we have
doctors working for the NHS also working at private hopsitals, causing
waiting lists to increase. Completely mad.
Unfortunately I doubt you will get very far in complaining and I doubt many
others will contact MPs for you. Best of luck with whatever it is you want
anyway. I'm just amazed that you never noticed any signs of what was
happening.

"Canada Bob" <rober...@hotmail.com> wrote in message
news:8435bc6b.05012...@posting.google.com...

MrBlueSkye

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Jan 25, 2005, 12:20:46 PM1/25/05

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"news" <ne...@newnews.netuk> wrote in message
news:ySuJd.1460$ch2...@newsfe1-win.ntli.net...

> Hello,
>
> That sounds typical of what is happening in the UK. Maybe if you belonged
> to a minority group or just made a visit to the UK deliberately in order
> to be treated by the NHS you might have been sorted out far quicker. It
> seems that most of us don't count, maybe we should all start kicking and
> screaming like certain groups.
> It happens with doctors surgerys too (once past the receptionist that
> knows more than all the doctors put together), it depends on which you go
> to as to whether you get referred to specialists soon enough. Even with
> hospitals, there was something on the news some weeks ago about a mother
> having to be taken off to a hospital some 40 miles away with a baby. Then
> we have doctors working for the NHS also working at private hopsitals,
> causing waiting lists to increase. Completely mad.
> Unfortunately I doubt you will get very far in complaining and I doubt
> many others will contact MPs for you. Best of luck with whatever it is
> you want anyway. I'm just amazed that you never noticed any signs of what
> was happening.
>

He demonstrated outside a hospital that the health secretary was visiting
today, and I expect will recieve some good news soon.
MBS

Fleetie

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Jan 25, 2005, 2:11:17 PM1/25/05

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Wasn't your case mentioned on TV this evening in "Granada Tonight" or
whatever the equivalent local news prog was on the other channel?

I'm sure it was, and ISTR they said you'd met some MP or something today.

They said this guy ended up spending about 8k GBP of his own money and is
now getting better.

Or wasn't it you?

Martin
--
M.A.Poyser Tel.: 07967 110890
Manchester, U.K. http://www.fleetie.demon.co.uk

MrBlueSkye

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Jan 25, 2005, 3:28:35 PM1/25/05

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"Fleetie" <fle...@fleetie.demon.co.uk> wrote in message
news:pRwJd.148$6b1...@newsfe5-gui.ntli.net...

Clean yer winders yer lazy Goth!
MBS

Dom

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Jan 25, 2005, 4:04:31 PM1/25/05

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> Thanks for your time spent reading this, and for your considerations,
> it is appreciated and valued. As a final request, would you please
> "Forward" this Petition on to everyone in your address book, I need
> all the support, in numbers, that I can muster on this.
>
> Yours Sincerely,
> Bob Norburn.

I find that horrendous especially as the NHS are currently spending 6.4
billion over the next 10 years on IT !!! in the NPfIT project!!!

I know because I am implementing it - it is my job !

Domestos

That's the rubbish, mate. The treatments used for cancer have just about the
largest evidentiary base of any treatmenst in medicine.

> The point still remains that the comments you made to the original poster
> were purely your unsypathetic unsubstantiated carping assessment of his
> situation. In my view you were and still are talking a load of old
> bollocks.
> MBS
>

I'm sympathetic, I just don't think his special pleading is justified,
because his assumptions and preconceptions are all wrong.

jsfinch

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Jan 26, 2005, 12:27:57 PM1/26/05

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Wow, some women have right chip on their shoulder! Maybe you're in the
wrong profession. You appear to be the type that is always right, how dare
the rest of the UK be wrong. Going by your self centrered and ill informed
responses, I doubt you're even qualified or have worked in the NHS. You
would probably be the type to start shouting if one of your relatives were
turned away - your type always does. You don't seem to care unless
something directly affects you.
You're definitely one for the kill file - I don't feed trolls.

"Steph" <st...@vancouver.island> wrote in message

news:ikDJd.172830$Xk.75925@pd7tw3no...

(Troll message deleted.)

Steph

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Jan 26, 2005, 9:37:41 PM1/26/05

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"jsfinch" <j...@newnews.co.uk> wrote in message
news:xqQJd.847$hv1...@newsfe1-win.ntli.net...

> Wow, some women have right chip on their shoulder! Maybe you're in the
> wrong profession. You appear to be the type that is always right, how
> dare the rest of the UK be wrong. Going by your self centrered and ill
> informed responses, I doubt you're even qualified or have worked in the
> NHS. You would probably be the type to start shouting if one of your
> relatives were turned away - your type always does. You don't seem to
> care unless something directly affects you.
> You're definitely one for the kill file - I don't feed trolls.
>

Kill file away.
1) Why do you assume that someone called "Steph" is a woman?
2) I'm British, trained in the UK in general medicine and clinical oncology
and worked in the NHS for 12 years, a Fellow of the Royal College of
Radiologists, a Member of the Royal College of Surgeons, and a Fellow of the
Royal College of Surgeons and Physicians of Canada.
3) I'm an assistant prof at the main University in the Canadian province
which has the best outcomes for all common cancers in the whole of the US
and Canada (and that's rather better than the NHS....)
4) The only argument I've heard here is that there is a lot of waste in the
NHS, so a bit more doesn't matter.
5) The treatment he's had is unproven ..... there is not a single randomised
controlled trial that I'm aware of to prove that it's better than standard
therapy. The NHS has always been prepared to send patients to different
health authorities if a treatment of proven worth is available in another.
This isn't the case here.

Am I always right? No. But I'm a hell of a lot righter than you on this one.
4) You're the troll, mate

Roderick Stewart

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Jan 27, 2005, 2:06:41 AM1/27/05

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In article <VtYJd.182690$6l.107583@pd7tw2no>, Steph wrote:
> 1) Why do you assume that someone called "Steph" is a woman?

I have to say it's what I would assume too, in the absence of any other
information, and I'd be surprised if this were the first time this
particular confusion had occurred to you, because "Steph" is a common
abbreviation of a feminine name.

If you care about this (and if you don't, why mention it?) then
wouldn't it be more sensible to use a form of your name that makes the
matter clear?

Rod.

Steph

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Jan 27, 2005, 2:32:57 AM1/27/05

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"Roderick Stewart" <rj...@escapetime.nospam.plus.com> wrote in message
news:VA.000008d...@escapetime.nospam.plus.com...

It's my name. The majority of "Stephs" in the world are probably men. I
didn't bring it up, the other poster did, and I was just straightening him
out.
Why don't you use a form of your name that doesn't suggest a plumbing tool?

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Jan 27, 2005, 12:00:05 PM1/27/05

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"Steph" <st...@vancouver.island> wrote in message

news:Jy8Kd.188466$Xk.35672@pd7tw3no...

Us early - mid seventies-early eighties

MrBlueSkye

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Jan 27, 2005, 12:00:55 PM1/27/05

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"Rooney" <pvro...@aol.com> wrote in message
news:j27iv099n25gf5tgo...@4ax.com...

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Jan 28, 2005, 11:40:37 AM1/28/05

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"Steph" <st...@vancouver.island> wrote in message

news:XGtKd.195696$Xk.101649@pd7tw3no...

Yes the Red (my second home in those days) has changed hands several time
since, in your day the landlord would have been Noel Burrows who as a keen
bowler went on to achieve some National TV Crown Green fame. Funnily enough
I bumped into another ex Christie medical staff ex pat on the internet only
a couple of months ago who lived at the time on Tatham grove. Ian now lives
in Ft Worth, Texas
I am an ex surgical theatres Techie man.
MBS