This post was written by Rose Woodward on December 6, 2010
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.
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
This post was written by Rose Woodward on October 28, 2010
Rose Woodward writes ……………..
First Conference of The International Kidney Cancer Coalition Gives Voice to National Patient Groups
Organizations from 19 countries, 5 continents support new international kidney cancer network
FRANKFURT, Sept 13 2010 – Patient advocacy groups from 19 countries across 5 continents met in Frankfurt for an innovative conference, “Expanding Circles in Kidney Cancer”, from Sept 10-12. Delegates from national patient support and advocacy organizations from around the world met for the first time to exchange best practices among national groups and work together on projects of international interest to the kidney cancer community.
Patient advocacy groups celebrated the new International Kidney Cancer Coalition (IKCC) as an independent, democratic network that will support existing national organizations and nurture the development of new patient-led groups interested in this rare, but increasingly prevalent cancer. Joined by leading kidney cancer oncologists from the United States, India, Germany, the United Kingdom and Canada, patient group delegates debated and proposed a number of initiatives that require an international focus.
“We are thrilled with this clear endorsement of IKCC which reinforced the need for a collaborative international network, Markus Wartenberg, Executive Director, Das Lebenshaus, a German patient support and advocacy organization committed to improving quality of life for patients living with kidney cancer. “Patient groups like ours have long sought an opportunity to collaborate on clinical research priorities at the international level.”
Based on the success of this first conference, the IKCC will be reaching out to other national patient organizations to join the network.
“IKCC offers national groups the opportunity to share best practices and to help more patients ” says Rose Woodward, Founder of the UK Kidney Cancer Patient Support Network and Patient Advocate for the James Whale Fund for Kidney Cancer . “As patient-led organizations, we all have to use our funds very carefully, in the UK we already work in close partnership with the James Whale Fund for Kidney Cancer and the Kidney Cancer Resource, but through the IKCC we will collaborate on many more projects and share our resources openly with one another across national boundaries.”
“The IKCC conference was truly unique in the world of kidney cancer” says Gilles Frydman, Founder of the global ACOR (Association on Online Cancer Resources) and KIDNEY-ONC listserv with over 2,000 members worldwide”, adding “the trend towards patient-driven research will demand a global focus.”
Patient groups from India also attended the Conference . “the IKCC provides an opportunity to work across borders in a culturally sensitive and respectful collaboration,” says Vandana Gupta from VCare Foundation based in Mumbai “and we look forward to growing our patient support capabilities in India as a direct result of this conference.”
About the International Kidney Cancer Coalition (IKCC)
IKCC is an independent, democratic network of patient support and advocacy organizations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support, and assistance to national kidney cancer organizations. All kidney cancer organizations are welcome to join the IKCC . An open invitation exists for all kidney cancer groups where ever they are in the world, to join with us and provide a global voice for kidney cancer patients.
For more information about the International Kidney Cancer Coalition, visit www.ikcc.org
For more information please contact:
07896.88 20 84
Posted under Rose Woodward
This post was written by Rose Woodward on September 25, 2010
Rose Woodward……….. www.kidneycancersupportnetwork.co.uk
Just finishing the presentations for the 1st ever International Kidney Cancer Conference for Patient Groups to be held in Frankfurt next weekend…leaving on Thursday and the Conference is Friday , Saturday and Sunday so I will be returning home on Monday…. I think this is going to be so valuable – we have all worked very hard to make it happen and the support has been tremendous.
We have invited every single Kidney Cancer Patient Organisation we know about to attend and we will have representatives from 16 Countries meeting with us; UK, Germany, Canada, Africa, Australia, India, Eastern Europe, USA etc and it has been great to see their enthusiasm for the project. Our leading renal Clinicians have been very supportive of our starting up this type of Coalition which was desperately needed and we are lucky with those who have chosen to attend and talk to us about their work, This is a patient led patient orientated initiative. We thought of it , we set about making it happen .
By Patients for Patients about Patients !!
We have a very basic start – up website here… have a look.
I’m so looking forward to meeting everyone, It was wonderful to meet Ken Youner and Jay Bitkower and Gilles Frydman earlier in the year when we set-up the organising committee. Markus Wartenburg and Dr Marion Beier have been doing so much work to make this happen. Deb Maskens and I have been working together on some presentations – quite a double act !!! I joked to say we should hire ourselves out for wedding, birthdays and BarMitzvahs for fundraising !!
More to come !
This post was written by Rose Woodward on September 5, 2010
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.
This post was written by Rose Woodward on September 1, 2010
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……
This post was written by Rose Woodward on May 29, 2010
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 firstname.lastname@example.org; 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.
This post was written by Rose Woodward on April 30, 2010
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?
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
This post was written by Rose Woodward on April 24, 2010
Rose Woodward, herself a survivor of kidney cancer and Patient Advocate for the James Whale Fund for Kidney Cancer said “On behalf of the James Whale Fund for kidney Cancer and my fellow kidney cancer patients, we welcome the news today that Conservative Party will set up a Fund to enable patients suffering from rarer cancers to get the cancer drugs they desperately need.
Over the past 4 years, on behalf of terminally cancer patients from all over the Country, 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. By anyone’s standards it is cruel and callous to refuse to treat vulnerable patients who are already having to cope with a diagnosis of a serious cancer.
At the James Whale Fund we are passionate believers in the NHS and universal care. We welcome the day when it is the Doctor who will decide what drugs he will prescribe for his patient not an administrator sitting behind a desk far away from the Hospital.
N I C E (National Institute of Health & Clinical Excellence) denies drugs on the basis of cost, but Oncologists want to prescribe drugs on the basis of clinical effectiveness and the needs of their patients.
Cancer patients need to know the NHS will be there for them when they most need it and at the moment they are being let down. The NHS must stop saying to cancer patients “You are too expensive for us to keep you alive.”
Patient Advocate for the James Whale Fund for Kidney Cancer & Founder of the Kidney Cancer Support Network
This post was written by Rose Woodward on April 6, 2010
Well this is how I explain what it means to use the title a ” Patient Advocate” To me it means putting the interests of Kidney Cancer patients first and foremost and having the experience and knowledge to be able do that.
Julia Black and I have been advocating for rights for Kidney Cancer patients, since way back when. It was in 2006 that we started this battle and sadly it is still going on today. Only the drugs have changed as more advances are made in our treatment options - but we are still thwarted by the NHS and N I C E who will not allow cancer patients to have these drugs funded by our NHS.
Julia was one of the first cancer patients to fight the battle for the right to access to clinically effective drugs and to challenge rationing of cancer drugs by N I C E, who stopped cancer patients getting the drugs their Clinicians wanted to prescribe. It’s a long story and one which needs to be told, all the different patients and families ; the tragedies and the triumphs. Families who then joined in to try and help Mums and Dads and brothers and sisters, Julia and I have files full of letters and emails and some long hard fought battles took over 500 letters and months to fight. It was a terrible time and a disgraceful episode in the history of the NHS BUT STILL OUR FIGHT GOES ON.
Julia was in the brave group of breast cancer patients who fought, not only to get the drug she and other desperately needed (Herceptin) but then had to fight the funding bodies and regulatory bodies like N I C E to get the drug approved for others .
I met when Julia was trying to help a Kidney Cancer Patient friend called Keith Ditchfield who was trying to get funding for the drug Nexavar. Julia’s knowledge and contacts were working for Keith and through Julia’s efforts Keith was finally funded to have Nexavar paid for by the NHS – one of the first in the Country if not the first. We thought we could take Julia’s methods and my knowledge of the Cancer Networks and PCT commissioning processes and make it work for the many other Kidney Cancer patients who needed the new innovative drugs that were being used all over the world to treat Kidney Cancer except here in the UK.
I will continue the tale of what happened as when I have the time, but in the past 3 weeks mine and Julia’s time in increasingly taken up now with a new tranche of kidney cancer patients who are now being denied Everolimus ( AFINITOR) a new drug manufactured by Novartis.
But please don’t just soldier on alone, do remember there is help here at the James Whale Fund for Kidney Cancer www.jameswhalefund.or and the Kidney cancer Support Network www.kidneycancersupportnetwork.co.uk - we are here to help each other. Julia and I are cancer patients ourselves, we know what this is like and we are doing this for no other reason than we believe cancer patients have a right to proven licensed clinically effective drugs. Please don’t go on feeling you are on your own with no-one to help you. Don’t feel you need to pay out for professional advice - knowledge is power is this situation and we can unlock that knowledge for you to help you get the drugs you need. Our methods are used all over the Country by other bona fide cancer charities who are trying to help their patients access treatments. Don’t be afraid to ask for help – we are a community of Kidney Cancer Patients and we need to look after each other. Which is what we do here at the JWF and the KCSN – come and join us and together we will campaign for kidney cancer patients to have NHS treatment “the right treatment at the right time” !!!
This post was written by Rose Woodward on March 28, 2010