Cancer Bloggers Have your Say

The one thing cancer patients understand is the plight of another cancer patient, so when I was asked to help publicise the situation  Amit Gupta finds himself in, of course I agreed…..and I would ask your help if you can get involved to spread the word . It costs nothing to help and means so much.
College student Amit Gupta has just under 28 days left to find a suitable bone marrow donor to combat the Leukemia threatening his life by getting people to get a cheek swab to test for compatibility at http://amitguptaneedsyou.com/

Because South Asians (Indians , Pakistanis, Nepali etc.) are so sparsely represented in the donor pool a unique all-out drive has begun to beat the clock and the disease.

“Leukemia is a word no one wants to hear. It is a type of cancer that starts inside your bone marrow. Amit Gupta has it, and his survival is 30% to 35%. A bone marrow match would double his survival. people are severely under reported in the donor pool including other minorities. finding a perfect match are about one in 20,000. Amit has been using social media to get the word out and reach potential donors. ” Dr. Sanjay Gupta from CNN, USA. http://on.cnn.com/sELFzT

The nature of Acute Leukemia is it’s swift and often unheralded, undiagnosed onset. Amit had been feeling worn out and was losing weight, and wasn’t sure why. After an exam and some lab work his doctor called and was brief, “Amit, you’ve got Acute Leukemia. You need to enter treatment right away.” Within hours he was hospitalized and the race had begun.

“I have a couple more months of chemo to go, then the next step is a bone marrow transplant. South Asians are severely under-represented in the bone marrow pool, and I need help,” Amit said.

Unlike blood transfusions, finding a genetic match for bone marrow that his body will accept is no easy task. The national bone marrow registry has 9.5 million records on file, yet the chances of someone from South Asian descent of finding a match are only 1 in 20,000.

Amit started the photo websites Photojojo and Jelly. Both sites have galvanized into action with “Swab for Amit” gatherings, making calls to South Asian clubs and putting out the word all over the Internet.

A few ways to help:

If you’re South Asian, get a free test by mail. You rub your cheeks with a cotton swab and mail it back. It’s easy.
Anyone who is South Asian (India, Pakistan, Bangladesh, Nepal, Bhutan, Maldives, or Sri Lanka), please point them to http://amitguptaneedsyou.com/
Students have organized a donor drive by contacting 100kcheeks@gmail.com. They sent kits, flyers, information and made the whole process easy. From NYC to San Francisco from the UK to India strangers are participating to help find a donor and save Amit’s life and eventually help others.

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Kidney Cancer Careline launched
9 March 2011

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James Whale Fund for Kidney Cancer today launched the Kidney Cancer Careline; a telephone helpline (0330 111 2 333) which provides help, advice, support and encouragement to kidney cancer patients, their carers and families.

The Careline is operated by a panel of cancer patients who can draw on their own experiences to support and encourage patients and their families during the difficult time following a diagnosis of kidney cancer.

The Careline provides the means for patients to make contact with someone who knows exactly how they feel; this understanding and empathy from other patients can provide a great deal of comfort during their cancer journey.

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If you would like a Careline poster for your clinic or sugery, click on the image on the right to download a file to print. Additional copies can be obtained, free of charge, from the Fund by emailing Leela Huckstep.

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The Careline can also provide advice about the process for accessing the latest treatments for kidney cancer, some of which are not available through the NHS, and can guide patients and their families through this process, as well as provide information about government funding schemes, such as the Cancer Drugs Fund.

Rose Woodward, Patient Advocate for the James Whale Fund said “We know a diagnosis of cancer can leave you feeling bewildered, confused, anxious and concerned about the future. This affects not only patients, but their families and everyone close to them. This is especially true when the diagnosis is for one of the less common cancers, such as kidney cancer.”

“Our unique Kidney Cancer Careline will be a listening ear and a friendly and knowledgeable voice at the end of the phone for the support of kidney cancer patients across the UK. We can offer kidney cancer patients and their families a route to obtain information personalised to their particular situation; no longer will patients be faced with searching through websites and a mountain of books and leaflets when they need help to answer those questions or concerns they may have once they are away from their hospital environment. “

“Our aim is to bridge the gap between the medical expertise of the hospital team and the patient and carer facing the reality of living day-to-day with kidney cancer.”

James Whale, Chairman and Founder of the Fund, said “We are really excited by the launch of the first careline in the UK totally dedicated to kidney cancer patients and their carers and families. One of the most important aspects of having a disease such as kidney cancer is being able to talk to someone who knows about the disease.

By staffing the Careline with cancer patients, we can offer help and support from the people who have experienced this devastating disease first hand. This can be a great comfort for both patients and their families when faced with a diagnosis of kidney cancer.”

The Kidney Cancer Careline is complimentary to the services already available from the James Whale Fund for Kidney Cancer. These include an online kidney cancer information service for patients and their families, an online chat forum (the Kidney Cancer Support Network), regional Patient Days and Kidney Cancer Care, a website dedicated to the provision of information about the kidney cancer treatment pathway. This variety of services enables the Fund to offer a bespoke service tailored to the needs of each individual patient.

The Kidney Cancer Careline can be accessed by calling 0330 111 2 333, seven days a week, emailing kcc@jameswhalefund.org or visiting www.kidneycancercare.org.uk. The Kidney Cancer Support Network can be found at www.kidneycancersupportnetwork.co.uk.

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The James Whale Fund for Kidney Cancer launched the Kidney Cancer Careline this week. A telephone helpline (0330 111 2 333) which provides help, advice, support and encouragement to kidney cancer patients, their carers and families.

This is great news and a big step forward.  Check out the new web-site for details.

Lots going on at the James Whale Fund so expect more to follow soon.

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JUST TO LET YOU KNOW THAT TODAY THE JAMES WHALE FUND ISSUED THE FOLLOWING PRESS RELEASE ON BEHALF OF KIDNEY CANCER PATIENTS IN ENGLAND

Following on from Health Secretary Andrew Lansley’s announcement in July, an interim £50 million cancer drugs fund was launched today which could grant access to vital life-prolonging drugs for thousands of cancer patients.

Broadcaster James Whale, founder of the James Whale Fund for Kidney Cancer, 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 would”

Rose Woodward, a survivor of kidney cancer and Patient Advocate for the Fund expressed caution; “ we have 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. We have kidney cancer patients lined up waiting to be told how this Drug’s Fund will actually work. At the moment it is yet 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 PCTs before their doctors can apply to the Drugs Fund. This is not good enough – the NHS needs to get its paperwork in place before raising patient’s hopes.”

If you need any advice about the Fund or the processes that govern it , then please drop an email to me at the email address below .

Many of you will have noticed that in the above press release article we could only talk about kidney cancer patients in England, quite what is happening in Wales or Scotland we are not being told, if you have any information or can find out please post it here or let me know and we’ll make sure the patients concerned get the best help we can give them to get a similar arrangement. It’s shocking that this new Fund should discriminate against patients in Scotland and Wales – has the world gone stark raving bonkers. If the drugs work in England then they will work on Wales or Scotland. Every patients life is valuable not just the English!

Julia Black who works so hard as a patient advocate for us all is doing a lot of work on this and is in correspondence with all the Strategic Health Authorties around the Country so we’ll keep you posted. When we know so will you.

Take care,

Rose Woodward – contact@kidneycancersupportnetwork.co.uk

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http://www.kidneycancersupportnetwork.co.uk/forum/viewtopic.php?f=58&t=461

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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……

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

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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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.

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

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

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