http://www.kidneycancersupportnetwork.co.uk/forum/viewtopic.php?f=58&t=461
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This post was written by Rose Woodward on July 28, 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
Tory Election promises and Kidney cancer
I keep reading various blogs and comments on articles in the press – you know where people go on and give their comments at the bottom of the article – saying that the issues around David Cameron’s election promise to set up a Cancer Drugs Fund and the scandal of patients who can’t get drugs on the NHS are just plain wrong – well the facts are 100% accurate , many people just don’t bother to find out what actually happened before having a go or some even saying he was lying…..
Fact – these kidney cancer patients visited David Cameron with Clive Stone in August 2008.
N I C E initially refused to fund this drug.
100′s of kidney cancer Patients including those in Camerons constituency were refused Sutent, the drug their NHS Consultant Oncologists wanted to prescribe for them, before N I C E did their U Turn in March 2009.
Following unprecendented protests from Clinicians, MP’s, patients, Cancer Research UK , Macmillan Cancer Relief, National Cancer Research Institute and public ridicule from many of the other health systems ( including social welfare systems) around the world who provided Sutent to their cancer patients, N I C E were forced to admit they had got it wrong.
N I C E took 3 years to reinvent the wheel over this drug during which time 100′s of cancer patients were denied drugs and died prematurely. 100′s of families watched loved ones die early and 100′s of Doctors and Oncologists watched their patients die before their time because they were not allowed to do their job and prescribe proven clinically effective drugs.
And that was the scandal , thankfully it did not affect the families of the people who are making these allegations against DC. However those families it did affect deserve a little compassion.
How sad that people think it is OK to use us a political football.
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This post was written by Rose Woodward on May 2, 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
This may just be the Turning Point to end our struggle for proper treatment
As reported in the Telegraph: “David Cameron today pledged that any patient with cancer should be allowed any drug licensed in the last five years, if their doctor seeks it, even if the National Institute for Health and Clinical Excellence has ruled against its use”. Of course he will be unable to keep this pledge unless he first wins the election with a substantial majority but it still give us all hope for the future.
This is terrific news and will give thousands of patients extra time with their loved ones. Sadly it will come too late for many who have since died having been denied by both NICE and many PCTs under the callous Post Code Lottery thereby preventing clinicians from prescribing the most appropriate drugs.
As expected NICE have today responded by saying yet again that the NHS do not have a bottomless pit despite it still being in surplus some £1.4 BILLION representing an “Underspend” on patients!
Can NICE still be considered “fit for purpose” when they say they are independent (costing taxpayers £70 million pa) and yet have members of an NHS lobby group sitting on their appraisal committees? Yes that’s right, for those that don’t know a new NHS group called the Commissioning Support Appraisals Service (CSAS), now sits on their appraisals committees at a cost of £300,000 pa from the NHS budget. Shockingly, CSAS say they want to INFLUENCE NICE decisions in view of all the new cancer drugs in the pipeline waiting to be appraised. CSAS was commissioned by Birmingham East & North PCT whose chief executive is well known for her stance on spending money on cancer drugs. She was reported in her local paper recently for calling our drugs “DEATH DEFERRING” saying money could be better spent elsewhere, for which she apologised after an outcry from patients. I am even more concerned as it appears that she is now to be put in charge of planning End of Life Care for us all!
SO THE CHOICE IS OURS – VOTE LABOUR AND GET MORE OF THE SAME, OR VOTE CONSERVATIVE FOR THEIR PROMISE OF ACCESS TO THE BEST DRUGS FOR US AND FOR FUTURE GENERATIONS!
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This post was written by Clive Stone on April 3, 2010
It’s Patients who matter !!
You can’t keep a good patient down !!!!
Sorry folks to go off the kidney cancer agenda but I have to tell you this news – which is also about a Group of Cancer patients trying to get their voice heard in the NHS…..
Statement from Cornwall & the Isles of Scilly Cancer Patient and Carer Group – Chair Rose Woodward
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Andy Burnham agrees to an independent Review into specialist cancer services centralisation .
The Independent Reconfiguration Panel late yesterday agreed to the request from Cornwall’s cancer patients to carry out a full review into the way the decisions to transfer specialist cancer surgery from Cornwall to Devon have been taken. Cancer patients , their families and supporters are delighted that, at last, someone has listened to the views of those who really matter – the patients.
Rose Woodward, Chair of the Cornwall and Isles of Scilly Cancer Patient and Carer Group who has led the campaign for patients and public to be consulted when decisions are taken about their cancer treatment said ” This decision by Mr Andy Burnham, Secretary of State for Health totally vindicates what cancer patients have been saying for the past two years, all we have ever asked for is to be treated fairly. Why has taken Ministerial intervention and two years of distress and worry for this to be recognised by the local NHS ? Rose said “I hope when this inquiry publishes it’s findings, everybody will be open and honest with the inquiry panel and we will finally get some straight answers about why this was allowed to happen. Patients in Cornwall are passionate about the NHS, we have to be because we are the ones who bear the brunt when it goes wrong. Of course we want the best treatment possible but we want it here in Cornwall; what works in London & other cities does not work in Cornwall.”
In January the local NHS went ahead and transferred more cancer surgery services to Derriford in advance of the Secretary of States decision. Patients are now forced to travel to Plymouth but they still haven’t got the extra support they were promised. Cancer Patient Groups in Cornwall are asking for patients to have the choice of care in Cornwall if that is what they want. A spokesman for the Keep Cancer Care in Cornwall Campaign said ” The local NHS should now have the good grace while the independent review is being carried out, to allow cancer patients who want to stay in Cornwall, close to their loved ones, to choose Treliske Hospital for their surgery . At the moment cancer patients can choose anywhere in the entire Country for surgery except our local Hospital - it’s a total nonsense”
In their recommendations, the Independent Reconfiguration Panel members agreed with all the issues cancer patients have been raising. The panel also accepted people in Cornwall were worried about the implications of this change on the future of other local nhs services, including other rare cancers.
Cancer Patients and families thank their County Councillors who were not prepared to accept the empty words of the local NHS at the County Council meeting on the 10th December 2009 and voted to ask the Secretary of State to intervene. We hope local NHS organisations will now understand the depth of feeling that exists about centralising services out of Cornwall and use the chance offered by this high level independent review, to work in partnership with patients and rebuild the trust which has been so badly damaged over the past two years. The Cancer Patient Group would like to especially thank the 32,000 people in Cornwall who signed the Cancer Patient Petition asking for a proper consultation, it is their support that has kept us going. |
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This post was written by Rose Woodward on February 16, 2010
