James Whale Fund for Kidney Cancer welcomes NICE’s approval of drug in the fight against kidney cancer

Good news for Kidney Cancer patients in the UK! This is the latest press release from The James Whale Fund for Kidney Cancer on Votrient.

James Whale Fund for Kidney Cancer welcomes NICE’s approval of drug in the fight against kidney cancer

The UK’s leading specialist kidney cancer charity has welcomed the news that NICE has approved GlaxoSmithKline’s Votrient for the first-line treatment of patients with advanced renal cell cancer. However, following on from recent news that cancer survival rates in Britain lag behind those in other Western European countries, the Fund has expressed concern that more needs to be done.

Rose Woodward, a kidney cancer survivor and Head of Patient Support at James Whale Fund for Kidney Cancer said;

“We are relieved that NICE has recognised the importance that there must be more than one type of drug to treat late stage kidney cancer. Until today there has only been one drug available to clinicians to prescribe to their patients and this has proven not to be effective for everyone. We hope that Votrient will help fill that gap. We have campaigned for many years for more drugs like Votrient to be made readily available because kidney cancer is a type of cancer that is very difficult to treat. It cannot be treated with chemotherapy or radiation therapy like many other cancers. Once kidney cancer spreads, these new drugs are the only hope that patients have to extend their life.”

Broadcaster James Whale, founder and Chairman of James Whale Fund for kidney Cancer and a kidney cancer survivor said;

“Kidney cancer patients will find this approval of the cancer drug Votrient a great comfort so close to Christmas. NICE has been fully aware that the mood of the Government and the general public is that terminally ill cancer patients should not be denied cancer treatment and, after the farce surrounding the refusal of Everolimus earlier last month, some good news is long overdue. As someone who has been directly affected by kidney cancer, I understand just how imperative access to these life-prolonging drugs is.”

Julia Black, member of the Patient Advocate Team for James Whale Fund for Kidney Cancer said;

“The UK’s cancer death rate is currently higher than the European average and NICE’s decisions are having a profound effect on the way we treat our cancer patients and the quality of health care available. It leaves UK kidney cancer patients at a major disadvantage in terms of the availability of state-of-the-art cancer drugs, and this means patients in the UK are likely to die prematurely compared to the rest of Europe and the USA. This is unacceptable. We are forever hopeful that NICE will now see the need for a second-line treatment and look forward to the appeal for Everolimus at the end of February 2011.”

Editor’s Notes:

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

Posted under Andy Thomas, Votrient

This post was written by AndyThomas on December 24, 2010

NHS Cancer Drugs refused – NHS Homeopathy gets a Yes !?!**

Julia Black on behalf of the Kidney Cancer Suport Network, put up a Number 10 Downing Street Petition about the N I C E refusal to fund  cancer drugs: it was cut off in it’s prime when the new Coalition Government stopped all petitions and signing  while they thought about it !! But in the 6 weeks it was up on the site  we got  nearly 2000 signatures, which was pretty good in 6 weeks….anyway we have  just had the answer to Julia’s petition , you can read the response to that here…..
While I was looking at the site to see if the Coalition Gov. are going to continue to  “allow” it’s citizens to petition their Government on issues they feel strongly about, I noticed that a Dr was asking the DOH to force N I C E to appraise Homeopathy, presumably  to find out whether it is cost effective  to use millions of pounds of NHS money on Homeopathy  while they  refuse to fund clinically effective cancer drugs… the Government answer is here… I find this just incomprehensible – they should appraise the  clinical evidence    but to refuse to do that even , well honestly it makes you weep …..
Stay warm……
Rose   Woodward 

Posted under Campaigns, Cancer Drugs, N.I.C.E., Rose Woodward, Social Medicine

This post was written by Rose Woodward on December 6, 2010

Article Cancer Drugs Fund to get £200m a year

Rose Woodward – Patient Advocate

At long last…… confirmation that the

Cancer Drugs Fund to get £200m a year  

There was good news for cancer patients in England this week after the government confirmed it will provide £600 million for a three-year fund to improve access to new cancer drugs on the National Health Service.

There had been fears that the pot may be reduced under the current spurt of cost cuts, but the Department of Health announced yesterday that £200 million a year will be made available for the Cancer Drugs Fund from 2011 to 2013. 

The move is designed to help patients get better access to therapies recommended by their specialists, even if they have not been approved by cost regulator the National Institute for Health and Clinical Excellence, giving clinicians yet more power to dish out the treatments they feel are the most appropriate.

In addition, it is hoped that the extra cash pile – which is separate from existing Primary Care Trust budgets – will also help to improve the country’s ranking in terms of the provision of innovative cancer treatment to patients, as it is low on the list compared with many of its global peers.

Just a few weeks ago the government said it is has also set aside £50 million for an interim fund to help patients get treatment with drugs that have the potential to extend survival or improve quality of life before the fund ‘proper’ is launched next year, with clinically-led panels deciding on how to spend this money for patients locally.

The move does not take away from NICE’s remit, as the Institute will continue to appraise most significant new drugs and will have an important part to play in the government’s plans to switch to a system of value-based pricing for new medicines when the current Pharmaceutical Price Regulation Scheme expires, it said.

“Our longer-term plans will change the way we pay for drugs so that patients get better access to drugs and the NHS and the taxpayer get better value for money,” commented health secretary Andrew Lansley.

Consultation launched

The DH has now kicked off a consultation over its plans, seeking public opinion on the arrangements and other proposals for the fund’s operation, including ways in which patients and clinicians can be supported to make the best treatment decisions and what the scope of the Fund should be.

The Association of the British Pharmaceutical Industry has welcomed the launch of the public consultation and the government’s commitment of £200 million a year to help boost patient access to innovative cancer treatments.

Director-General Richard Barker said the consultation raises many important questions about how the fund will operate, such as “whether the fund should be administered at regional or national level and how to ensure that NHS cancer patients across England have a fair, timely and equal opportunity to benefit from the fund”.

The consultation will run until January 19, 2011.Its really important that as many cancer patients and families complete the consultation document and let the NHS know how we feel and to stress the need for this Cancer Drugs Fund to be continued for as long as some people in the NHS wish to refuse treatment to cancer patients.

 Please contact me if you would like a consultation document sent to you by email..


or download it from our patient forum at     www.kidneycancersupportnetwork.co.uk

Rose Woodward

Posted under Afinitor(aka Everolimus/RAD001), Avastin, Campaigns, Cancer Drugs, General, N.I.C.E., Nexavar, Patient Day 17thNov2010, Rose Woodward, Social Medicine, Torisel

This post was written by Rose Woodward on October 28, 2010

The James Whale Fund speaks out on the New Interim Cancer Fund

Good to see that the James Whale Fund is keeping the pressure on for Kidney Cancer patients across the UK.

James Whale said “Today’s launch of the Interim Cancer Drugs Fund offers a
ray of hope to kidney cancer patients, many of whom are in the depths of
despair because they have been denied cancer treatment by their local NHS
Primary Care Trusts. We applaud the creation of this Cancer Drugs Fund, but
we need to know the Fund really will do what the Prime Minister told us it

Rose Woodward, herself a survivor of kidney cancer and Patient Advocate for
the Fund said they had spent the weeks since the announcement of the interim
Cancer Fund trying to find out from NHS managers how cancer patients could
access the millions of pounds in the Fund. Rose said ” we have kidney
cancer patients lined up waiting to be told how this Drugs Fund will
actually work. At the moment it is another hurdle for patients to jump over
at a time when they are ill & deeply distressed We are told patients still
need to be refused twice by PCT’s before their Doctors can apply to the
Drugs Fund. This is not good enough – the NHS needs to get it’s paperwork in
place before raising patients hopes.

It really is great that the Interim Fund is there to help patients but they need to be very clear on how patients can access the fund and not raise hopes. Patients have spent too long battling against the PCT’s at a time when they need help. Please let’s put a stop to this and make it work.

Posted under Andy Thomas, Cancer Drugs

This post was written by AndyThomas on October 1, 2010

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

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

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

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

Open letter to Ben Goldacre and Guardian Readers ….

This in response to Ben Goldacre’s misleading article in todays Guardian Newspaper  - really disappointed that the writer of such a brilliant book -  BAD SCIENCE – falls into the same trap as he  tries to warn us about in his book – he would do well to reread certain chapters and then take a long hard look at what he has written. His obvious personal  political opinions should come second to evidence – or has he changed his mind?

Dear Ben,

Your article in The Guardian today Saturday 24th April  is  “Bad Research”

It’s pretty obvious  being misled & failing to check the facts doesn’t only apply to the readers of your brilliant book Ben, it is something you have fallen foul of here.

Had you checked your facts about the history of Kidney Cancer Patients battle to get just one treatment option funded by our NHS, you would have noted kidney cancer patients met with David Cameron in August 2008 before N I C E did a U turn and approved Sunitinib, a clinically effective and innovative cancer treatment it had previously turned down on cost.

Now of course N I C E are meant to appraise end of life drugs for terminally ill, rarer cancer patients differently thanks to our campaign. The arbitrary (unchanged 9 year old) figure of £30,000 is no longer used to determine whether or not we offer active end of life treatments( and compassion) to patients facing a terminal diagnosis of cancer.

You would have found out that our patient group recently asked to meet with Andy Burnham and Ann Keen; both requests were turned down.

You would have checked your facts and found out the invoice cost of Sunitinib ? It is an oral tablet form of targeted cancer treatment ; without in- patient, nursing or community costs – the invoice cost to the NHS is £26,000 pa- only N I C E with it’s smoke and mirror tricks could turn that into a scare mongering £55,000.

If you want the evidence Ben it is readily available … ask the leading NHS Oncologists and the many patients around the world still on the drug after 3/4/and even 5 years. Many continuing to work and support their families. We could do with your help to convince the bean counters to help keep us alive Ben, not cause us more distress then we are currently under trying to deal with a diagnosis of a serious cancer and being forced to fight for some sort of active treatment at the same time..

I hope many of you commenting on this post never find yourselves in the position of being denied vital treatment readily available in other social welfare systems around the world but not here in the UK. I am a passionate advocate of our NHS . But it is sufering from it’s own illness; incurable bureaucracy . Let our Clinicians do their job- caring & treating patients, helped , not dicated to, by administrators and statisticians

Posted under Campaigns, Cancer Drugs, N.I.C.E., Oxford Support Group Demonstration 27-Aug-08, Rose Woodward, Sutent, Uncategorized

This post was written by Rose Woodward on April 24, 2010