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Who will notice another life ending? –

 

Rose Woodward – www.kidneycancersupportnetwork.co.uk

Last night in Scarborough Fred Binch died. Fred was a kidney cancer patient who was denied treatment by his Primary Care Trust. Fred’s Oncologist wanted to treat him him with a new and effective  drug called Everolimus.  Fred had responded well to previous treatments and his Dr’s  thought he would do so again if he was given the opportunity. But somebody sitting behind a desk in a PCT Office miles from the Hospital deciided they knew better than the  Oncologists and the MDT and they had a meeting and condemned Fred to a premature death all to save £100.00 per week. The difference between the cost of the treatment Fred had been taking and the new treatment they wanted to prescribe for him.

Imagine the last few weeks of your life knowing that a  Group of people have decided you cannot have the treatment  your Dr’s say you need. Someone like Fred didn’t have a cats chance in hell of being able to pay for the drug he needed. yet with  dignity  he just kept on fighting as his  disease  robbed him of his speech and his very life’s breath as a tumour continued to grow  putting pressure on his windpipe.  Cruel beyond understanding. This was  a man  who had worked hard all his life, married his childhood sweetheart, raised a family – lived a “good life”.

He was let down by the very people charged with looking after him. Do they care – do they even know? Fred was just another nameless, faceless statistic. A kidney cancer patient who had the audacity to ask to be  treated.

To me he was a quiet hero.  At peace now.

Rose  x

Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, N.I.C.E., Rose Woodward, Social Medicine

This post was written by Rose Woodward on September 1, 2010

Cancer Charity Remains “Absolutely Confident” of Cancer Drugs….

Here is the latest press releass from the James Whale Fund for Kidney Cancer with regard to the promised Cancer Fund

Cancer Charity Remains “Absolutely Confident” of Cancer Drugs Pledge
26 August 2010
A leading rarer cancer charity has spoken out at claims that the Cancer Drugs Fund promised by the Government is under threat. The James Whale Fund for Kidney Cancer has maintained an open dialogue with the Department of Health since Health Secretary Andrew Lansley announced last month that an interim drugs fund of £50 million would be made available to cancer sufferers.

Nick Turkentine, Chief Operating Officer for the James Whale Fund for Kidney Cancer said; “Since the Government pledged that an interim fund would be made available we have seen nothing yet to suggest that this will not go ahead as planned. I think it’s a little too early in the process to be writing off the Cancer Drugs Fund before it has been tested. For the past 4 years we have been pleading in front of jury’s of PCT administrators to allow patients to have proven, innovative cancer drugs that clinicians want to prescribe. We are still optimistic that the emergency drugs fund could save hundreds of lives as long as these clinically led regional panels do not hold up proceedings.”

Rose Woodward, a kidney cancer survivor and Patient Advocate for the Fund added; “I have absolute confidence that the Prime Minister will follow through with his election pledge to cancer patients and that they will be able to access the drugs their Hospital Consultant Oncologists want to prescribe for them. We know the DOH is working hard to make that happen, we have been given details of how the emergency drugs fund will operate and we will be one of the first charities to test out the new system in October for kidney cancer patients denied cancer treatment by the PCT’s.”

“This is our best hope after many years in the bureaucratic wilderness of the NHS. We believe the Government has recognized the plight of cancer patients and the cancer drugs fund is the first step on a difficult road to give cancer patients a much better standard of care and improve our poor survival rates.”

About the Fund: The James Whale Fund is the UK’s leading kidney cancer charity and was set up in 2006 by broadcaster James Whale who lost a kidney to cancer. Today James continues to lead a full and busy life, as do the majority of people who are diagnosed and treated early. Every year almost 7,000 people in the UK learn that they have kidney cancer; that’s over 16 people a day. And yet the condition – the eighth most common cancer among men – rarely attracts much public attention. Our mission at the James Whale Fund is to try and change that.

For more information about The James Whale Fund for Kidney Cancer, please visit www.jameswhalefund.org or email Freddie Johnson at freddie@fullportion.com or call 0845 225 1500.

I think this is the most pragmatic approach, let’s keep our fingers crossed that it comes off.

If you want more information then goto the fund’s web-site.

Posted under Andy Thomas, Cancer Drugs

This post was written by AndyThomas on August 27, 2010

A long time since my last blog……

It’s been ages and ages since I last write a blog but I’ve been so busy just settling down into my new job, riding bikes, buying dogs, roller-skiing and trying to sleep that there hasn’t been time.

However I thought it would be worth publishing the Arch to Arc video so you can all see what it was like, and hey it might even encourage some of you to sign up for it next year ………. Here it is!


Arch 2 Arch London/Paris Cycle from Laurence Cameron on Vimeo.

I think Laurie has done a great job, just about the right length.

The roller-skiing has started again in ernest, which is a good thing since I’ve put on so much weight since the bike ride… Crazy given all the cycling, running and skiing I’ve done, but at least you now know why there’s a pie shortage in Southern England.

Lots of exciting things have been going on at the James Whale Fund for Kidney Cancer over the past couple of months. I’ll try and make an effort to write about them shortly, things like the nurses on-line training course and the Patient Day that’s coming up on the 17th November. Check out the web-site if you want to learn more.

Oh yeah, and here’s a pici of the new hound ….

Hands up who didn’t go Awwww Cute!!! ….. (we’ll see just how cute it remains once she’s destroyed our carpets and furniture).

Please sponsor me by clicking on either of these links VirginGiving

Posted under Andy Thomas, Arch To Arc 2011, General

This post was written by AndyThomas on August 25, 2010

NHS use surplus £1.7 Billion to pay off managers

NHS to use four years of unspent taxpayers accumulated funds totalling £1.7 BILLION to pay for managers’ redundancy packages and restructure costs whilst cancer patients continue to be denied life-extending drugs and are left to die with no effective treatment!

Contrary to what we have been led to believe the NHS has in fact carried forward massive “underspends” for at least 4 years whilst all the time denying cancer drugs as “too costly” and subjecting many very ill patients to callous processes (which vary between PCTs) of having to plead for drugs to stay alive longer. It now appears that the DoH will be using these unspent taxpayers/stakeholders funds for lining their own pockets with enormous redundancy payments based on already over inflated salaries (more than 300 NHS people earn more than the Prime Minister – according to the Daily Telegraph) after having stashed cash away over the years by denying patients drugs. You couldn’t make this up!!!

Here is the Evidence

Health Service Journal reports 13th July 2010
“NHS chief executive Sir David Nicholson has warned the Department of Health may seize control of the 2 per cent it told primary care trusts to set aside for “non-recurrent” spending this financial year.
The requirement to set aside the 2 per cent – approximately £1.7bn – was set out in the original NHS operating framework for 2010-11, published last December.
Sir David told HSJ at the time the funds should be used to “fund the costs of change”, including reconfigurations and redundancies.”

Health Service Journal reports 15th July 2010
“The Department of Health has agreed NHS Employers can use a £1.8m surplus from its core contract “to assist their cash flow and balance sheet position” and has signed a new deal with the organisation.”

BBC Reports 16th July 2010
“The NHS in England has set aside nearly £1.7bn this year for reorganisation – more than seven times what it aims to save on management, the BBC has learnt. The fund – held back from the front line – will help pave the way for GPs to take over budgets from managers.
NHS boss Sir David Nicholson said it was there to kick-start the process.”

Letter to all NHS Chief Executives dated 13th July 2010, from Sir David Nicholson, Chief Executive of the NHS, states
“(a) Increasing financial transparency and consistency
Within those requirements we will strengthen our assurance mechanisms during the interim period to keep a tight grip on finances and to standardise our mechanisms for system management. This will include specific monitoring and accounting for:

• financial support for named organisations;

• the detailed application of the 2% non-recurring funds to support delivery of change;

Whilst NICE continue to ration effective cancer drugs using their unfathomable formulae, we have no alternative but to lobby this new government to bring forward the promised Cancer Drugs Fund before it becomes too late for many more patients. Why should cancer patients continue to be denied effective drugs due to cost alone when many ineffective so-called managers are escaping with huge payoffs at our expense!!

You wouldn’t treat a dog like this and at least they have the RSPCA!!

Clive Stone
Founder – Justice for Kidney Cancer Patients
16th July 2010

Posted under Cancer Drugs, Clive Stone

This post was written by Clive Stone on July 16, 2010

Just a week left to the great Kidney Cancer Arch to Arc Cycle Ride!!

We’re so close now to the event,  just a few days and we’re all off to Paris and if the weather holds like it is today it’ll be fantastic !

The team have raise over £22,000 so far and the contributions still seem to be coming in…. what an effort!

It sounds like the team have been training hard and every-one’s physically ready, but don’t forget to give yourself a few days off before we go, time to taper off as they say.  My final ride will be on Sunday (the London to Brighton) and I’m just going to take it nice and easy and enjoy the day.  I can’t do anymore than I’ve done and my experience from doing it back in March tells me that it’s worth being well rested up before we start. 

Also If you can get to your local bike shop before we go then it’s worth getting them to give it a quick check over, however a certain amount of spares will be taken and we have a spare bike in the support van if all else fails.  There are cycle shops along the route (at least in Boulogne and Aberville so we can get parts if needed, they all seemed to be very helpful)

As before, if you’ve got any questions about logistics or anything then let me know, I’m taking the whole of next week off so I have plenty of time to run around for people if needed.  We have a final pre-event meeting over at the James Whale Fund on Monday where we’ll do our final checks.

Everyone should have received their Arch to Arc tops by now, and here’s a picture of one of the riders modelling it for us …nice hip work Trevor!!  Makes it all seem much more real, the excitement for me is palpable.

The Official Arch to Arc Shirt

I’ve been forced into riding my push-bike into work this week due to a flat tyre on my motorbike :(   I was only intending to ride in one day this week, but never mind at least the sun’s out.  My BMW dealership love to delay things, I almost feel guilty asking them for anything, it’s like they’re doing me some big favour allowing me to buy one.  Anyway, enough of that I could rant for hours on how badly I’ve been treated as a customer.

As for next year’s ride, I’ve been plodding around the streets of London during my Lunch-hours going into as many cycle shops as possible asking them to put up a poster and leaving them with a batch of leaflets, they’ve all been pretty nice about it so far and CycleSurgery and Evans Cycles have both given me contacts in their head office marketing departments. 

We’re looking to learn from this year’s ride and extend it to 50 people next year so it’s going to mean a lot of leg work to get the riders.  Jane and the kids have agreed to hand out leaflets at the London to Brighton event this weekend to see if tapping into a targeted audience has any impact.  I’m of the belief that doing as many of the Cycling Sportif’s as possible this year and handing out leaflets and talking to people may be the best way forward.  Anyway, nothing to lose by trying that approach.

If you’re reading this and still want to donate then please click on one of the links at the bottom of this blog, if we could get to £25,000 this year … well, wow!!

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010, Arch To Arc 2011

This post was written by AndyThomas on June 16, 2010

The Voice of Desperation – as if cancer is not bad enough!

I have been writing to  a wonderful lady – the partner of a cancer patient called Ian Bowers. Ian and his family have been forced to pay for their own treatment for Ian cancer – the drug Ian’s Dr wants to prescribe for him is SUTENT. But Derbyshire  Primary Care Trust  ( using the word CARE  and TRUST in their title seems outrageous  for this organisation)  will not pay for Ian’s treatment despite the fact ( scans to prove it ) the drug is working and is holding the cancer at bay, despite the fact that there is no alternative treatment, for Ian’s condition which is a very rare cancer, and despite the fact that Derbyshire  PCT is sitting on nearly  £2,000.000 – TWO MILLION, YES ………….TWO MILLION POUNDS……….. UNDERSPENT IN THEIR BANK ACCOUNT.

How can this happen in the year 2010 that a patients needs care and treatment – the money is there to pay for the treatment, the treatment is working but the highly paid administrators and NHS managers decide they know better than the Dr.s

This is a terrifying picture of what is happening to our wonderful NHS now the wrong people are in charge of making decisions about our cancer treatment.

I received this from Jane and with Janes permission, I would like to put it here  so that anyone coming to this site  will know what our fellow patients are going through. I find it almost unbearable to read.

Today was the NHS meeting that will decide whether Ian Bowers lives or dies. Of course no-one within the organisation had the decency or compassion to inform us of the outcome by phone. As it is also a bank holiday and the powers that be will doubtless have both Monday & Tuesday off we expect a letter will arrive at the end of next week. Ian has been vomiting for 2 days, which he has rationalised as “a bit of dodgy fish” but I think it is stress. The atmosphere crackles with tension. Our son has sensibly departed to his girlfriend’s house, perhaps sensing any slight misdemeanour on his part will cause WW3.

I consider myself a liberal pacifist but at this present moment I can understand what drives people to snap: to jump off a bridge or drive their car at 100 miles an hour into a wall; or lash out at someone who dares to cut in front and nonchalantly steals “my” parking space. If this was America I could empathise with the kids that take their parents’ guns and let loose in a shopping centre. The tension is unbearable.

This is what no-one in authority, or anyone who has never had to put their lives literally in non elected bureaucrats’ hands comprehends. Not only do we live with cancer and the very real threat of loss on a daily basis but we have also to cope with inequitable, unjust and infuriating systems that measure our lives in terms of algorithms and acronyms. QALY = quality adjusted life years – will this expensive drug give us value for money? Will the patient (an anonymous, faceless entity) live for more than a few months with the drug than without it and is a few months worth the investment. In many cases “no”. The patient regardless of age, current health and well being is not valued as an individual, a human being, but in terms of cost effectiveness. He/She will die anyway so why prolong the agony? Why give him the hope of a “cure” or the opportunity to have some normality, to take a holiday, to say goodbye, to make his/her peace with the world?

“We have to make difficult decisions” the bureaucrats state, I doubt “public health consultants” or “chief executives” ever lose sleep over the fact they have sentenced a human being to an early, agonising and untimely death because they have ensured that the money saved will provide several more meetings with buffets and drinks for their managers to compensate them for the “difficult decisions” they have to make.

Ian is watching inane TV, unsure how to cope with my impotent rage at the injustice of the situation we blamelessly find ourselves in. So I rage quietly in writing and pour another glass of wine. If I have a heart attack it won’t be the extraordinary “stress” these bureaucrats have caused us – it will be my lifestyle choices that are to blame. People say life is just a ride but sometimes I really just want to get off……

Posted under Cancer Drugs, Rose Woodward, Social Medicine, Uncategorized

This post was written by Rose Woodward on May 29, 2010

Arch to Arc Update ……….

It’s been a while since I last wrote a blog, however it’s been a very busy time for me having just started a new job.  My focus has been elsewhere, however it hasn’t stopped me training and getting myself ready.

The biggest pain I’ve had to deal with is thinking I’d be able to commute to my new job and have a safe place to put my bike, sadly no …..  so I’ve had to purchase a foldaway bike that I can keep by my desk.  I’m amazed at how good it is, clearly it’s not quite as fast as my road bike, but it’s pretty close and has the same riding position.  So I’ve done 120 miles on it this week!

I’ve also got a couple of big rides coming up, the Wantage to Winchester and the London to Brighton.  Both of these are around 50 miles so will be great warm ups for the London to Paris, and dont forget that those of you on the team that want to get together, we have the 22nd May to look forward to.  I hope that everyone on the team has been busy building up their mileage, it’s not long now before the big event.

Jane, my wife’s, been busy and completed the London Marathon in an impressive 4hrs 20mins for the James Whale Fund

London Marathon 2010

Quite a day, I’ve never been to one before and it’s great to see London with no cars.  I might try for it myself next year if I can summon up the energy to do all that training.

The Arch to Arc fund raising is going very well, we’re getting really close to our £20,000 target and it’s made me think that it’s time to start contemplating 2011.

It may seem a little early to start planing the next ride, but to be honest I’d like to see if we can get 50 riders signed up next year.  I’ll be creating a facebook page inviting people to sign up so for those of you who missed out this year and want to be part of it in 2011 then now’s your chance.  Just get in touch with me.

To bring the need of raising awareness a little closer to home for me an ex-work colleague of mine sadly passed away this week of Kidney Cancer (so I’ve been told).  It was a total shock to us and I dont think many of us even knew he’d been ill.  Such a shame, he was a great guy and well liked, and so young.  My heart goes out to his family.

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010, Arch To Arc 2011

This post was written by AndyThomas on May 2, 2010

Team Colleen Kidney Cancer

Posted under Christy

This post was written by Christy on May 1, 2010

Here we go Again – the Postcode Lottery

If you are in the nightmare situation of having to fight to get treatment for Kidney cancer – please don’t think you have to do this on your own – we can help you and we will . We have many friends who are themselves patients and carers and family members who can talk with you and hold your hand to help you get through the appalling situation you find yourself in.

If your Oncologist wishes to prescribe treatment for your Kidney Cancer and yet your Local Health Authority ( England – Primary Care Trust -PCT or Wales and Scotland a Local Health Board – LHB ) refuses to provide funding then please email Rose and Julia at contact@kidneycancersupportnetwork.co.uk; we can provide expert advice, individual letters and contacts to lead you through the process and help you understand the policies and how you can challenge the system to make sure you have the best chance possible to get access to the best available treatments.

Julia and Rose have been helping cancer patients in 100′s of PCT’s to get access to proven and effective kidney cancer treatments for nearly 4 long years, sadly here we are 4 years down the line and the NHS are still refusing to provide active cancer treatment to desperately ill kidney cancer patients – we are fighting exactly the same battles now as 4 years ago.

In this day and age it is scandalous that patients not only have to fight their diagnosis of cancer, but they have to use vital time and energy battling with the very organisations that are meant to care for us. We are passionate believers in the NHS and universal care but how can we stand by and let administrators and managers decide who to treat and who not to treat. The decision whether and how to treat patients MUST be made by Oncoligists/Clinicians in Hospitals and not adminstrators sitting behind desks in PCT Offices. We cannot turn our back on our fellow cancer patients and watch them and their families suffer because “the system” will not allow new and innovative, clinically effective treatments to be prescribed to NHS patients.

We are not running a  business, we don’t even have a bank account and we certainly  don’t take money from the Pharmacuetical companies who make the drugs patients need. We are able to do it because we are helped by the James Whale Fund for Kidney Cancer Charity. All over the UK  patients and families donate money, leave legacies and run marathons, hold coffee mornings, curry parties , cycle on fundraisers   to make sure this vital  help is always there for the next person who needs it.  But Julia and I  also do it because we have to;  because  as cancer patients ourselves, we understand  what facing an uncertain future means  and the last thing on your mind should be whether your Doctor will be “allowed ” to prescribe you the treatment  you need in order to keep you alive.

NHS Constitution…….1st paragraph…….The NHS belongs to the people.
It is there to improve our health and well-being, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

Posted under Arch To Arc 2010, Britain's Biggest Curry Party, Campaigns, Cancer Drugs, Fund Raising, N.I.C.E., Rose Woodward, Uncategorized

This post was written by Rose Woodward on April 30, 2010

My Mom’s Story

On August 6, 2007, Colleen Sigman passed away from renal cell carcinoma. Colleen Sigman is not just another statistic for kidney cancer she was a mom, a grandma (maw maw), a niece, an Aunt, a sister-in-law, and a cousin and most of all she was my best friend and my life along with many others will never be the same without her.

My mom loved life and she lived it to the fullest. When we found out how far advanced her cancer was she never once said “Why Me?!” The only thing she said was that she was glad she got to raise her children. She spent the next month of her life making sure that her children and grandchildren would be okay after she was gone. 

I found the Kidney Cancer Konnection on facebook and I’m so glad I looked more into the site. I have found already meet 2 wonderful women who have lost loved ones to this horrible disease. I finally found people that get it!

I hope to be able to blog about my life and the struggles with losing my mom to kidney cancer and maybe along the way I can help someone that is having the same struggles.

Posted under Christy

This post was written by Christy on April 30, 2010

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