This post was written by Rose Woodward on December 6, 2010
Today has seen the long awaited decision to strip N.I.C.E. of its powers that enabled it to ban the use of much needed drugs. For the Kidney Cancer community this can’t come soon enough. For years now we’ve been fighting for our rights for new cancer drugs and treatments, for many this decision has come too late but nevertheless we’re grateful that common sense and decency have prevailed.
I have my concerns though. Yes I’m delighted that this quango has had this controversial powers removed and it’s been downgraded to an organisation that will help write guidelines, but what does this really mean?
N.I.C.E. was only ever supposed to be group that offered guidance anyway, and why is it going to take until 2014 to action this? Surely that should be instant.
Also, are we moving into an even more ill defined postcode lottery? Who will really decide what drugs are going to be made available to you as a patient? The doctors, PCTs, some “to be defined” local committee? I’ve seen little clarity on this as yet and I worry that we could be entering into an even worse era.
It’s great to see N.I.C.E stripped like this, but let’s not take our eye off the ball. I’m going to the house of commons on Wednesday this week and I’ll be interested to hear other people’s views on this. I’ll report back.
This post was written by AndyThomas on November 1, 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 – 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
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
Let’s see if this has any impact. I’ve cc’d my local MP and prospective MP and Sir Andrew Dillon as it usually forces them to reply and aknolwledge
Dear Professor Littlejohns,I am writing to you directly as a Kidney Cancer patient in regard to your decision to deny Afinitor as a second line treatment.Why if N.I.C.E. openly admit that this drug shows clear clinical benefit do you not seek to approve it?As you are well aware there are very few treatments available to Kidney Cancer patients in the UK and as such when one comes along it seems only fair to approve it.You seem (as usual) to have based this negative decision purely on cost. The QALY calculation you use for some reason is not disclosed to the public due to IPR which appears ludicrous given this is a public service. I think it would be fair and proper to make your process transparent and available to the public at large as these are the people you work for.As a supposed independent body I would expect N.I.C.E. to act as such and not just follow the direction of the Department of Health. I expect N.I.C.E. to work in the interest of the patient NOT in the interest of government policy.What real representation did you have from patients? How much weight was attached to patients as you came to your conclusions?It is also extremely unfair to only give the public (patients) a few weeks to put their case together.Why are we given such little time? If you want a response from patients then they need to be engaged at an earlier stage. It is outrageous that we only have to the 2nd March to put a case together.These drugs offer precious time to patients and families. We are not talking weeks we are talking significant numbers of months and years (as you are well aware). What cost do you attach to this?I would also like to add that as a rarer cancer we are not looking at a significant number of patients that need these type of drugs so why do you attach so much weight to cost when we are talking 100’s rather than 1000’s of people? At £100/day this is not a significant cost.Kidney Cancer is not a large drain on NHS resources in comparison to other cancers, so why are we treated in an inferior fashion? Is it because we are small minority that can’t fight back?All we ask for is a level playing field, this is clearly not the case and I would expect you to be addressing this in the interest of the patient NOT in the interest of the people who pay your salaries.I was also shocked that Ann Keen chose to announce that she was spending money on a new design of hospital gowns the day you announce that you will not approve Afinitor as a second line treatment, this was heartless and cruel. Disgraceful that we seem able to waste money and resources on items such as these and yet deny patients vital drugs that can give them a real quality of life.Clearly there are hundreds of other examples within the NHS where resources are being wasted (not least of which is the NPfIT) but there is little point in documenting them each in detail in this letter as you are well aware of it yourself.I urge you not to respond by saying that you are not responsible for any spend within the NHS or for government policy, rather I would like to hear how you will engage with the government (DoH) on how we can stop this waste. I’d also like to hear how you will start to engage with patients at a real level. The NHS is a wonderful resource and it is sad to see it being destroyed by bureaucracy in this way.Please realise that N.I.C.E. is meant to be an independent body working in the interest of the patient and as such we expect you to behave as such not to just throw cost in our faces each time a new drug is presented that offers valuable time and quality of life to people.I respectfully ask that you reverse your cruel decision and allow Afinitor as a second line treatment for Kidney Cancer patients. I also respectfully ask that you review what is clearly a floored approval process.Yours SincerelyAndy Thomas97 Sheepcot LaneWATFORDWD25 0DUcc Sir Andrew Dilloncc Claire Ward MPcc Richard Harrington
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This post was written by AndyThomas on February 27, 2010
I was asked the other day by one of our Kidney Cancer warriors in the US about the NHS and what it really means to us day to day in the UK, and would I mind writing a blog on it. Boy, what a task … take one of of the most widely talked about and explosive topics in the UK, boil it down to a few paragraphs of explanation and then hope to heck you wont get flamed all over the place.
So here goes! lets keep it simple.
The basic premise of the NHS is to provide comprehensive free healthcare to all.
You can see from the basic diagram below how the organisation breaks down from a governance perspective
Right at the top we have our government (parliament). The Health Secretary is the person who has responsibility (via Parliament) for the NHS, and has accountability, and responsibility for setting direction and budget. The Health Secretary is also responsible for the Department of Health.
The Department of Health is responsible for running the NHS. It sets targets, allocates money and generally oversees the management.
The Strategic Health Authorities (SHAs). There are 10 of these (I believe) around the country and they are responsible for ensuring that government policy is implemented at a local level, and they also operate as regional representatives of the Department of Health.
Beneath the SHAs we have the Primary Care Trusts (PCTs), and this is where it starts to get a little complicated (for me anyway). They are one of the biggest parts of the NHS and spend around 80% of the entire budget There are 150+ PCTs in the UK and they have responsibility for “buying” the care for the local population. Sounds odd doesn’t it? Basically it means that if you need treatment e.g. an operation the PCT buys that service from the local NHS hospital. Effectively the PCTs have control over how the money is spent, what treatments are available and what is not. So when we hear about NHS Managers, it’s generally the PCT managers they’re talking about.
Next we have the Hospital Trusts which is where the majority of healthcare workers can be found e.g Consultants, Drs, Nurses etc. All hospitals are managed by a Hospital trust, there are even different types of trust e.g. a Foundation trust, Ambulance Trust, but it’s not important for this basic description. The trusts are responsible for negotiating with the PCTs what services they can provide based on the budget.
So where do N.I.C.E. fit into this? Well N.I.C.E. is the independent body that decides which drugs and procedures the NHS should provide. They offer guidance on these treatments and drugs for the PCTs. If a patient needs treatment outside of this guidance then that patient will likely have to go through an appeal process with the their local PCT (which is why we hear in the media about the PostCode lottery). For Kidney Cancer patients in the UK this is where our campaign focus has been, to ensure that new drugs are given positive guidance. At a very simple level if N.I.C.E offer positive guidance on a treatment or drug then the PCTs are obliged to provide it, if not the patient is dependant on the individual PCTs ability to fund the treatment.
So that’s a really really basic description. I’m sure I may have some of the detail wrong but it should give readers a fair idea about what’s going on. I wont go into my personal views in this post … I’ll do that next so as to separate the two things.
This post was written by AndyThomas on February 22, 2010