Abandoned by the NHS !

From: Bob (robert01942_at_hotmail.com)
Date: 01/24/05 

Date: 24 Jan 2005 11:41:31 -0800

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, quote...
"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.snee@bolton.nhs.uk

maybe with a cc to

carole.hodgkinson@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 at...

kellyr@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.