Kidney Cancer Bloggers Have your Say

What a great evening we all had last night at “Le Raj” in Epsom Downs. The food was fantastic, the staff were excellent and I can’t believe that Enam Ali gave all of this for free! which meant all the money raised went to the Fund directly.

I cant remember the exact total that Chris Tarrant and Shane Richie raised in the auction at the end of the meal but they’re clearly used to doing this kind of stuff and used all their guile to eek out every last penny from the diners. The bids went way beyond my wallet capacity.

So, was a Chris Tarrant the same person off screen as he is on screen? I asked if he minded me taking a photo, you make up your own minds……

One of the bids got very confusing, it started as “A days archery with James Whale and a few of his friends” and ended up as (and this is my best guess) “A day with Shane Richie dressed as Robin Hood in the forest with the person bidding dressed, (or not), as Lady Godiva on horseback”. Anyway money has changed hands now, promises have been made and photographers are on standby, so good luck with that one Sandy! And let’s hope it’s a warm day!

As usual the James Whale Fund team did an excellent job of pulling this all together, they do it with such ease now it all seems second nature, although I’m sure Sarah would say something different.

Great night out! Thanks.

All the money raised goes towards helping fund initiatives for Kidney Cancer such as the Nurses Training Courses and the Patient Day on the 17th November

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Posted under Andy Thomas, Patient Day 17thNov2010

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

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

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

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

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Posted under Andy Thomas, Cancer Drugs

What an evening! Well done to the James Whale Fund for Kidney Cancer team for bringing this all together.

This year the world famous singer, composer and piano player Buddy Greco together with this talented singing artist wife, Lezlie Anders were guests at this year’s James Whale Fund Presidents Dinner (Buddy is in the foreground of the picture below with Lezlie standing next to him). We were lucky enough to be sitting next to them and what a charming couple they are. They’ve recently left California to settle in the UK and are still touring and working as much as ever.

You can also see Peter Stringfellow and his wife in the picture with Jane Cure standing between them. Peter Stringfellow made an excellent off the cuff speech to close the evening.

The stars of the evening though have to be Adrian and Jane Cure who gave us a moving talk about their experience of Kidney Cancer and how it has impacted their lives. I think it was an inspired choice to have them speak as it really drove home why we were all there and why the charity needs continued funding. You can see Ade below giving the talk. What was truly inspirational was how they are handling it all, rather than dwell on the negatives of the disease and how it has touched them it was all about the positives and how every day matters. In fact Ade gave a toast to “Life”.

Adrian and Jane have also brought out a 2011 calendar called “Wellesbourne Blooms” in the style of “Calendar Girls” in aid of the James Whale Fund, well worth buying. Beautiful photography and very tastefully done. There is also an accompanying DVD to go along with it on the making of the calendar. If you want to purchase one then visit their web-site here and follow the links. Or you can purchase the calendar direct from the James Whale Fund site here.

A magnificent evening was had by all and again a big thank you to the James Whale Fund for making this happen.

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Posted under Andy Thomas

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:

Rose Woodward -  Email – rw@jameswhalefund.org
Patient Advocate
The James Whale Fund for Kidney Cancer
www.jameswhalefund.org & www.kidneycancersupportnetwork.co.uk

07896.88 20 84

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Posted under Rose Woodward

Make a note of this date in your diary 17th November. Why? Well first off it’s my birthday! But secondly the James Whale Fund is holding another Patient Day and (for the first time) a Nurses Study Day.

It seems a while since the last James Whale Fund patient day, but this one is almost upon us, so if you want to be part of it then make sure you register on-line at The James Whale Fund Web-Site.

The last one was a huge success and this one promises to be even better with more topics and discussions specifically for the patient and carer. I always love these things because it’s a great excuse to meet people face to face, we spend so much of our time on-line and I think it’s so much nicer to know who you’re talking to across the Internet.

I also look forward to hearing about the outcome of the first IKCC meeting (International Kidney Cancer Coalition) it’s good to see other organisations around the world getting round the table to share knowledge and experiences.

On top of the patient day a Nurses Study Day will be held at the same time and location and if you want more details of that then go to The James Whale Fund Web-Site.

There have been lots of fundraising events this year and it’s great to see the money is being put to best use and the focus is fully on the patient with days like these.

I hope to see you all there in November. My special dietary requirement for the day is “Birthday Cake”!

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Posted under Andy Thomas, Patient Day 17thNov2010

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 !

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Posted under Events, General, Rose Woodward

Rose Woodward – www.kidneycancersupportnetwork.co.uk

Last night in Scarborough Fred Binch died. Fred was a kidney cancer patient who was denied treatment by his Primary Care Trust. Fred’s Oncologist wanted to treat him him with a new and effective  drug called Everolimus.  Fred had responded well to previous treatments and his Dr’s  thought he would do so again if he was given the opportunity. But somebody sitting behind a desk in a PCT Office miles from the Hospital deciided they knew better than the  Oncologists and the MDT and they had a meeting and condemned Fred to a premature death all to save £100.00 per week. The difference between the cost of the treatment Fred had been taking and the new treatment they wanted to prescribe for him.

Imagine the last few weeks of your life knowing that a  Group of people have decided you cannot have the treatment  your Dr’s say you need. Someone like Fred didn’t have a cats chance in hell of being able to pay for the drug he needed. yet with  dignity  he just kept on fighting as his  disease  robbed him of his speech and his very life’s breath as a tumour continued to grow  putting pressure on his windpipe.  Cruel beyond understanding. This was  a man  who had worked hard all his life, married his childhood sweetheart, raised a family – lived a “good life”.

He was let down by the very people charged with looking after him. Do they care – do they even know? Fred was just another nameless, faceless statistic. A kidney cancer patient who had the audacity to ask to be  treated.

To me he was a quiet hero.  At peace now.

Rose  x

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Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, N.I.C.E., Rose Woodward, Social Medicine

Here is the latest press releass from the James Whale Fund for Kidney Cancer with regard to the promised Cancer Fund

Cancer Charity Remains “Absolutely Confident” of Cancer Drugs Pledge
26 August 2010
A leading rarer cancer charity has spoken out at claims that the Cancer Drugs Fund promised by the Government is under threat. The James Whale Fund for Kidney Cancer has maintained an open dialogue with the Department of Health since Health Secretary Andrew Lansley announced last month that an interim drugs fund of £50 million would be made available to cancer sufferers.

Nick Turkentine, Chief Operating Officer for the James Whale Fund for Kidney Cancer said; “Since the Government pledged that an interim fund would be made available we have seen nothing yet to suggest that this will not go ahead as planned. I think it’s a little too early in the process to be writing off the Cancer Drugs Fund before it has been tested. For the past 4 years we have been pleading in front of jury’s of PCT administrators to allow patients to have proven, innovative cancer drugs that clinicians want to prescribe. We are still optimistic that the emergency drugs fund could save hundreds of lives as long as these clinically led regional panels do not hold up proceedings.”

Rose Woodward, a kidney cancer survivor and Patient Advocate for the Fund added; “I have absolute confidence that the Prime Minister will follow through with his election pledge to cancer patients and that they will be able to access the drugs their Hospital Consultant Oncologists want to prescribe for them. We know the DOH is working hard to make that happen, we have been given details of how the emergency drugs fund will operate and we will be one of the first charities to test out the new system in October for kidney cancer patients denied cancer treatment by the PCT’s.”

“This is our best hope after many years in the bureaucratic wilderness of the NHS. We believe the Government has recognized the plight of cancer patients and the cancer drugs fund is the first step on a difficult road to give cancer patients a much better standard of care and improve our poor survival rates.”

About the Fund: The James Whale Fund is the UK’s leading kidney cancer charity and was set up in 2006 by broadcaster James Whale who lost a kidney to cancer. Today James continues to lead a full and busy life, as do the majority of people who are diagnosed and treated early. Every year almost 7,000 people in the UK learn that they have kidney cancer; that’s over 16 people a day. And yet the condition – the eighth most common cancer among men – rarely attracts much public attention. Our mission at the James Whale Fund is to try and change that.

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

I think this is the most pragmatic approach, let’s keep our fingers crossed that it comes off.

If you want more information then goto the fund’s web-site.

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Posted under Andy Thomas, Cancer Drugs

It’s been ages and ages since I last write a blog but I’ve been so busy just settling down into my new job, riding bikes, buying dogs, roller-skiing and trying to sleep that there hasn’t been time.

However I thought it would be worth publishing the Arch to Arc video so you can all see what it was like, and hey it might even encourage some of you to sign up for it next year ………. Here it is!

Arch 2 Arch London/Paris Cycle from Laurence Cameron on Vimeo.

I think Laurie has done a great job, just about the right length.

The roller-skiing has started again in ernest, which is a good thing since I’ve put on so much weight since the bike ride… Crazy given all the cycling, running and skiing I’ve done, but at least you now know why there’s a pie shortage in Southern England.

Lots of exciting things have been going on at the James Whale Fund for Kidney Cancer over the past couple of months. I’ll try and make an effort to write about them shortly, things like the nurses on-line training course and the Patient Day that’s coming up on the 17th November. Check out the web-site if you want to learn more.

Oh yeah, and here’s a pici of the new hound ….

Hands up who didn’t go Awwww Cute!!! ….. (we’ll see just how cute it remains once she’s destroyed our carpets and furniture).

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