Kidney Cancer Bloggers Have your Say

For a long time now several of us who are trying to raise the profile and knowledge of Kidney Cancer have been talking together and swopping our trials and tribulations. Well, last year a few of us got together to try and get equity in treatment options, drugs and strength in numbers  to help argue our case with regulators and manufacturers – we want to improve the availability of clinical trials, get consistent information across Country borders and be able to support each other when we are looking at new KC research, treatment, funding etc.

so…… this letter is from those of us who have put together a steering group to make this dream of a stronger and united coalition into reality; The International Kidney Cancer Coalition.

Please let me know what you think of the idea, we now have several other patient groups in different Countries who have joined us. We have extended invitations to all the Kidney Cancer Organisations  to join us and make our voice louder and stronger….

IKCC – An Open Letter to the Kidney cancer Community  - click to veiw the actual letter in this  PDF  file or scroll down for   simple text version.

An Open Letter to the Kidney Cancer Community

Bad Nauheim, Germany, the 8th of March 2010

Dear Patients, Caregivers, Patient Group Leaders, Medical Experts, and Industry Sponsors:

This open letter is about the beginnings of IKCC, an international network of kidney cancer patient groups, along with background information about funding of this initiative.

What are the objectives of IKCC?
IKCC stands for International Kidney Cancer Coalition. It will be a network of independent kidney cancer patient support groups from around the world. The organization was born from a strong desire among various national patient groups to network, cooperate, and share experiences.

IKCC will be a supplement to existing organizations, and we hope to future ones as awareness of kidney cancer grows around the world. Our aim is to network efficiently, to share information, to develop and promote best practices in patient support and patient advocacy, and to meet unmet needs expressed by the various groups. All kidney cancer groups are welcome, as are individuals interested in starting advocacy and support groups in their own countries.

Why an international coalition?
Experience with other rare cancers proves this type of international network is valuable, supportive and inspiring. Most cancer associations, especially for rare cancers, have limited resources. It makes absolute sense to share information, to cooperate, and to work on similar projects together. Some examples of successful international coalitions:
• International Lymphoma Coalition – a worldwide network of lymphoma groups
• International Brain Tumour Alliance – an international brain tumour advocacy group
• Myeloma Euronet – European network of 42 groups from 20 countries
• Sarcoma Patients EuroNet Association – European coalition of 17 groups from 13 countries

The preliminary mission of IKCC is, “Networking, collaborating, and advocating on a global level to better support patients in each nation.” We believe that together we will be able to speak as one voice to expert panels and to the industry on behalf of many kidney cancer patient support groups.

How will IKCC be funded?
IKCC’s funding policy is based on the well-known “Code of Practice Between Patients’ Organisations and the Healthcare Industry” of ECPC, the European Cancer Patient Coalition. ECPC is a well-established organization comprising over 300 European national and international cancer patient organizations that have adopted the code of practice. IKCC already adheres to this code. After registration as a legal entity, IKCC will be a member of ECPC. In the meantime, each organization involved in IKCC is governed by the rules of transparency and ethical relations within their own country.

Our first conference – May 14-16, 2010:
The main objectives of the conference in Frankfurt are to learn more from each patient organization and to evaluate the future objectives and role of IKCC.

All the work for the conference has been done on a voluntary basis alongside our regular work for our national organizations. To cover costs for a global conference, we asked various pharmaceutical companies to support this international project with unrestricted educational grants. We are pleased to have their support. When agreements are finalized, we will publicly announce all sponsors in accordance with the ethical demands of full transparency in funding.

In conclusion:
IKCC will be a friendly, positive, welcoming organization centering on a common cause: Every day we see patients dying from kidney cancer. We would like to do all we can to achieve the best support, care, and treatment for kidney cancer patients and their families everywhere in the world.

With best regards on behalf of the IKCC Steering Committee:
Dr. Marion Beier (DE), author
Markus Wartenberg (DE), author
Other members:
Tony Clark (CDN)
Vandana Gupta (IND)
Deborah Maskens (CDN)
Andrew Wilson (UK)
Rose Woodward (UK)

Association: IKCC Registration pending.
Phone: +49-6032-9492-439
ikcc@lebenshauspost.org

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Posted under Campaigns, Cancer Drugs, General, Rose Woodward

I was asked for a comment about the NHS Constition today – had to give it some real thought  because I think the NHS Constitution is a great first step to recognising the real sense of ownership alot of patients feel towards the NHS. We feel passionately about our local Hospitals and the Clinicians & Nurses who look after us. But sometimes patients can feel lost because the NHS is such a huge machine with a life of it’s own, so many different organisations each with their own policies, guidelines and initiatives and it’s easy to feel individual patients to feel they don’t matter anymore.

As a survivor of Kidney Cancer, I have so much to thank the NHS for and I do so on a daily basis . Kidney cancer is a type of cancer which is difficult to treat and I’ve received all my treatment from the NHS which cared me during my illness. But I know other cancer patients who have been let down because “the system” is seen to be more important than the patient. The Constitution needs to be matched by actions at the coal face in GP surgeries, Hospitals and PCT’s and organisations like N I C E.

Patients need to know their views are valued – no more box ticking .

Ever  The Optimist  Eh ??  Rose Woodward  www.kidneycancersupportnetwork.co.uk

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Posted under Cancer Drugs, General, N.I.C.E., Rose Woodward

During the period that many hundreds of kidney Cancer patients were denied life extending drugs and died prematurely ( these kidney cancer drugs are readily availanble in other parts of the world on social welfare systems) the NHS spent £ 40,000,000.00 – YES 40 MILLION POUNDS – on solicitors and legal fees to two companies for “supporting” the NHS to draft contracts about their IT programmes”. !! The answer came in response to a question by Conservative shadow health minister Stephen O’Brien about the amount spent in legal fees for drafting contracts for the National programme for NHS IT in the Health Service. Health minister Mike O’Brien responded: “Between 1 April 2002 and 31 March 2009, the total fee paid to Allen & Overy amounted to £10,309,877 and to DLA Piper UK LLP £28,864,938, although Allen & Overy ceased to advise after 2006.” You couldn’t make it up ……. If this weren’t so desperately sad and tragic and cruel for kidney cancer patients and other cancer patients denied treatment their Clinicians want to precribe, it would be laughable – who decided this money was an effective use of NHS resources ??? I just to know how and why they had to spend this amount of NHS money which should be prioritised to front line care, on legal advice. Do we not employ enough civil servents that they can give the NHS legal advice. If we don’t and heaven knows why not ,then why not go out and employ someone ? you could hire a lot of IT lawyers for £40 million. It is an unbelievable sum – made worse by the fact we don’t even have a workable It system for the NHS and this sum doesn’t include the IT itself just the lawyers for advising about it. How did someone decide this was reasonable. Someone needs to get a grip of what is going on the NHS and fast, some of the managers are out of control !!

I’ve posted this on the Kidney cancer patient forum at www.kidneycancersupportnetwork.co.uk

Am I the only person who thinks this is totally out of order?

Rose Woodward -

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Posted under Cancer Drugs, General, Rose Woodward

The NHS is a wonderful thing – no longer do whole sectors of our population go without treatment because they can’t afford to see a Doctor………….. But Kidney Cancer patients are still denied clinically effective drugs while the NHS managers reward themselves with huge pay rises and bonuses. In a recent article it was quoted there has been a 43 per cent rise in the costs of managers, while spending on clerical staff rose by 78 per cent at Primary Care Trusts (PCTs) And their expenditure on management consultants and temporary staff more than doubled. We wonder why the Government wastes “ludicrous and heartbreaking” sums on moving bits of paper around rather than front line services. From 2004 to 2008 the Department of Health spend on administration went from £1.43 billion to £2.14 billion – a rise of 49.5%. The total spent on managers went from £566 million to £808 million, a rise of 43% Spending on other administrative staff increased by 78 %, from £606 million to £1.07 billion. According to an analysis of the DoH figures by the Conservative Party PCT spending on outside agencies rose from £53 million to £139 million – an increase of 162 %. That is just unacceptable. Katherine Murphy, from the Patients Association, said too often the millions spent on NHS bureaucracy did little to help patients, while the systems they set up left too many worse off. “These sorts of sums are ludicrous – and especially so given the heartbreaking stories we hear all too often about patients who have been denied their most basic needs,” Mrs Murphy said. Something is very wrong when those tasked with of looking us look after their own interests first !!

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Posted under Cancer Drugs, General, Rose Woodward

PRESS RELEASE 05.01.10

Callous Comments Cause Concern for Kidney Cancer Patients

At the recent annual NICE (National Institute for Health and Clinical Excellence) conference held in Manchester in December, the James Whale Kidney Cancer Patient Advisory Group was shocked at the language used by Sophie Christie, the Chief Executive of Birmingham North and East PCT. She spoke somewhat callously when describing the pressure new drugs put on the system and went so far as calling palliative care drugs “death deferring”.  It’s Ms Christie’s viewpoint that concerns the Cancer Patient Advisory Group, as she is the Chief Executive of the Primary Care Trust leading the new NHS Quango who have just been given a seat on the NICE appraisal committee which will give PCT’s significantly more control over which drugs are approved and which are not. This is especially critical to kidney cancer patients as it’s a type of cancer which cannot be treated with chemotherapy or radiation. Once kidney cancer spreads, then these medications are the only hope left for most of these patients.

According to Rose Woodward, a kidney cancer survivor and head of the James Whale Patient Advisory Group, “Cancer patients and families trying to come to terms with terminal cancer will be shocked to hear an NHS Director describe the “end of life” process in this way.  I thought it was a particularly insensitive speech. The NHS constitution, published just last year, promised to care for us to the end of our lives and treat us with care and compassion. It shouldn’t matter whether you are a heart patient, or just elderly, whether you are a cancer patient or victim of a serious accident, any patient facing a poor prognosis should expect the NHS to provide the best treatment available.   If we want to do our best for our people and improve the awful cancer survival rates in the UK, then the clinicians should decide who to treat and not accountants or managers.”

Nick Turkentine the Funds CEO said “Remarks like those made by Sophie Christie are never helpful when kidney cancer patients are so short of treatment options; and I fully understand why patients would be angry.” There has to be a way to strike a humane balance between cost and life. The cost is of course important, but when medication has the potential to offer a terminal patient additional quality time how can we put a price on that?

About the Fund: The James Whale Fund is the UK’s leading kidney cancer charity and was set up by broadcaster James Whale who lost a kidney to cancer in 2000; the head office is located in Cambridge city centre. 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 6,200 people in the UK learn that they have kidney cancer; that’s over 16 people a day. And yet the condition – the tenth 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

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Posted under Cancer Drugs, Rose Woodward

Nearly a year has passed since we started this forum and nearly a year since we all started working together – Andy Thomas and his marvellous kidney Cancer Resource, Clive Stone and his inspirational “Justice for kidney Cancer Patients”, Julia Black , and I with the Kidney Cancer Support network, our lovely Jane Thompson with the Jane’s Journey film, Bill Savage and his work with N I C E and the Cancer Networks … so many people joined together with a common aim to try and make a better, easier world for the kidney Cancer Patients who come after us – I think we have succeeded in our small way and I just know the work will continue.

Huge thanks is due to all our friends at the James Whale Fund for kidney Cancer especially to James Whale for giving us his energy and the chance to make a difference . Nick Turkentine for his skill and professionalism and bringing together such a good cohesive team and Sarah – organiser extraordinaire – for looking out for us all and making things happen !!! and to Jo, Nikki, Sharon, Paul, Malcolm and the rest of the gang who do such good work for to improve the lot of kidney cancer patients – Thank you from the bottom of my heart.

We have started some projects this year which should help change the way Kidney Cancer Patients receive their treatment in the future. We had a KC patient delegate at all the major political party conferences this year seeking to raise awareness of kidney Cancer with Politicians and reinforce the need for additional treatment options. We started the online Kidney Cancer Nursing Course for Urology CNS’s which will give them additional skills and knowledge specific to kidney cancer. We have had expressions of interest in joining the James Whale Fund for Kidney Cancer Medical Advisory Board and we already work in partnership with many of the leading renal Oncologists in the UK. We have produced updated patient information leaflets, produced “ U Tube” videos and learning tools and our aim is to continue this area of work.

Globally on behalf of the Fund I have been working with friends from Canada & Germany to bring together patient advocates from various KC groups from around the world to form a coalition to promote research and provide a stronger voice for patients. The James Whale Fund for Kidney Cancer has been talking to the Regulatory bodies in the UK and the EU to make sure we get a place at the table whenever Kidney Cancer is on the Agenda.

And of course many of us met up at the 1st James Whale Fund Kidney Cancer Patient Day in London November, this was a great day with patients working alongside expert renal Clinicians and according to the feedback was a huge success and will be an annual event in the future.

As well as all the above we have continued to support individual patients & local KC patient groups ( and we still need many more). We have provided feedback to the Pharmaceutical companies about patient information, and worked with the NHS to provide a kidney cancer patient perspective at various training days and conferences for nurses and Clinicians.

So all in all it’s been quite a year. If any of the above inspires you – please do get in touch because we always need more volunteers as there seems to be so much going on and so few hours to do it in !!!

As always we have had our low points and I have lost some very dear friends to this awful disease; friends who played an important role in securing the approval of Sunitinib our first N I C E approved drug to treat metastatic disease; patients like Ken Potts, Jean Murphy, Stephen Dallison, Kathleen Devonport, Kay Hopkins, David Basey and sadly many more.

It’s because we have to change things and ensure other patients never have to go through what these patients endured that we will work even harder in 2010 to make sure we get the best possible treatment approved for everyone who needs it.

We have some wonderful Clinicians working alongside us, and lots of people like those mentioned above prepared to give up their time to help us . In short we are making a difference and so we shall keep on keeping on.

I hope everyone has a lovely day tomorrow, but of course we know it will be a difficult time for others who will be missing husbands or wives, mothers or fathers so at some point tomorrow please raise your glass to our absent friends.

My wish is for everyone to have a Healthy and Peaceful 2010,

With love from Rose Woodward

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Posted under Cancer Drugs, General, Oxford Support Group Demonstration 27-Aug-08, Patient Day 18thNov2009, Rose Woodward

Those of you who came to the James Whale Patient Day in London see  www.jameswhalefund.org  in November will have great memories of the inspiring talk from my friends Deb and Tony who came all the way from Canada to talk to us and what a talk it was !!! Everyone was staggered by their tales of fighting this disease and establishing Canada’s first Kidney Cancer Supprt organisation.

Yesterday I reveived this note from them…………

Four videos of Canadian kidney cancer patients and caregivers have just been uploaded to

http://www.youtube.com/user/KidneyCancerCanada

These videos provide not only valuable disease specific information, but also hope and inspiration for those fighting this rare form of cancer.

KCC would like to share these videos with as many people as possible, and welcomes the opportunity to connect with your organization/blog/website through these videos or other content that you would like to share.

Here is a brief description of the videos:

Tony Clark – “Live with the disease”

Tony Clark talks about how he is living a full productive life with kidney cancer by using sequential treatment therapies. Tony is the Chair of Kidney Cancer Canada.

Deb Maskens – “Live life in the present”

Deb Maskens talks about how she is fighting stage 4 metastatic kidney cancer through participating in a clinical trial. Deb Maskens is the Vice Chair of Kidney Cancer Canada.

Karen Ross – “Live the days that you have”

Karen Ross talks about her life experiences as caregiver to kidney cancer patient and husband David Ross. Karen is also Kidney Cancer Canada’s volunteer Director for New Brunswick.

Wally Vogel – “Anatomy of hope”

Wally Vogel was diagnosed with stage 4 metastatic kidney cancer and given only a few months to live. Because of new kidney cancer treatments becoming available Wally is alive and well today with no evidence of disease (NED).

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Posted under Cancer Drugs, Events, General, Patient Day 18thNov2009, Rose Woodward

Well back home in Cornwall at last and catching after going up to Colchester to see my Dad straight from the James Whale Fund for Kidney Cancer Day in London on the 18th Nov.

What a great day – nearly 100 people !!!!! We were soooo pleased to see so many patients and carers and nurses from all over and some people travelled quite a way to be with us. But everyone said it was worth every ounce of effort and some of the comments from patients were very touching. One family who had travelled quite a way after a recent diagnosis said it had changed the way they were thinking about the disease and they felt they were not alone because they now had faces to put to names, had made friends and so they did’nt feel so alone anymore.

I just have to say the work and effort the James Whale Kidney Cancer Team put into the day was nothing short of amazing. It was a great venue; so near the underground tube station and the facilities at the Science Museum were first rate. Lunch was lovely, even allowing for my silly teeth following work in the dentist chair a few days previously, I thought the catering and the choice offered was superb, I know there were so many of us that we had to form an orderly queue for lunch but even that was useful because it gave us a chance to talk to other patients who we may not have met. I noticed a bit of nudging to get to the cakes in the afternoon and I have an endearing memory of Mr Turkentine, the Chief Executive of the James Whale Fund being stopped by so many people in the afternoon he missed the cakes and tea.. !!!

The James Whale Fund for Kidney Cancer fundraising stand inside the door with all the badges, Kidney cancer christmas cards and KC gifts on display, the welcome pack was so carefully thought out and the chance to sit in comfort if you needed a break was well planned. We knew there would be cancer patients at different stages of the kidney cancer journey attending and being able to relax away from the hustle of the main lecture room was a really good idea.

We had presentations from Prof Tim Eisen, Dr Paul Nathan and Dr Tom Powles and Debbie Victor the Uro/oncology nurse . A really good question and answer session, good chat and lots of hugging and air( and not so air)  kissing – whoo hoo  

So much to talk about and I know lots of people had more questions for the panel at the end which we didn’t have time to cover. For anyone who hasn’t completed their “Feedback/evaluation form” send it back to James Whale Fund   or go to our Forum at www.kidneycancersupportnetwork.co.uk  please do  send it back to us because there is the opportunity of that form to ask our speakers any questions.

I think it is important that when we do something like the Kidney Cancer Patient Day, we make it special, if we have patients & families travelling distances to be with us, then considering it is a first for many people, we have to make it worthwhile and we have to show the Healthcare professionals who came that we are serious about patients being put first and I ‘m convinced that means a good venue, good speakers, welcoming atmosphere and making sure we did the right things and gave people what they want from a day like that.

But a huge thank you to Sarah Ridge & Sharon  who put so much effort into to making the day such a success, to all our speakers, and especially fellow patients and wonderful friends Deb & Tony from Canada( we knew it would be good….. but that good !!!!) and to everyone who who joined us and made the day really memorable.

It was quite a day !!!!!!!!!!!!!!!

One thing I have to say is that there  were lots of people I wished could have been with us, not to be too maudlin but we have lost a lot of lovely friends to this awful disease  this year. I said a little private Hello to many of them because I know they would have been proud of what we did that day.

Take

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Posted under General, Patient Day 18thNov2009, Rose Woodward

JAMES WHALE FUND GETS 4 **** AWARD

Macmillan Cancer Support gives 4 Star rating to the James Whale Fund booklet

The 24-page booklet, ‘Understanding Kidney Cancer’ produced by The James Whale Fund for kidney Cancer was today awarded a 4 Star rating and high ‘readability’ score by the prestigious Directory of Information published recently by Macmillan Cancer Support.

The Macmillan Directory reviews 1,129 booklets, leaflets, audio visual materials and websites all of which Macmillan judge to see how useful they are to cancer patients . They then award each piece of information a score so that cancer patients and our families, but also Clinicians and the Nurses who look after us, can be sure of getting good clear guidance.

The Booklet called “Understanding Kidney Cancer” (180KB) was published in response to an urgent need for good accurate and upto date information about Kidney Cancer, it’s treatment and how to cope with a diagnosis of kidney cancer. The Fund wrote a 24-page, A5-sized guide for patients and carers as one of the first priorities when James launched the Fund. The booklet, first published in January 2007 and updated in November 2008, is available as a downloadable PDF. Simply click this link…

I was invited to the British Association of Urological Nurses UK conference in Torquay yesterday and asked to give a talk to all the Nurses and guest Clinicians about kidney cancer from a patient viewpoint, I took along loads of copies of the JWF booklets and the CNSs and Oncology nurses there were unanimous in their praise for the booklet. .
“It is so good to have something to give kidney cancer patients. This booklet is excellent because there is no scare mongering; it gives you hope and is very realistic and practical”
said Debbie Victor, Uro-oncology nurse specialist, Royal Cornwall Hospital, Truro.

So to get a 4**** rating and a high ‘readability’ score by the prestigious “Directory of Information Materials for People Affected by Cancer 2009/10″ was really quite an accolade for the Fund and everyone who contributed to it..
If you would like a copy we can send you one or you can download it and read on your computer or print it off yourself. If you think your clinic or hospital would like supplies please email your requirements to Sarah – sjr@jameswhalefund.org
at the James Whale Fund for Kidney Cancer.

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Posted under Rose Woodward

What is it with some English Hotels, I went to do a talk to a the training day NHS Cancer Registry staff on Thursday in Bristol, we had to stay overnight because it’s just about 200 miles from Cornwall and I needed to be there for 9.00 so they booked a hotel for me … well I thought to myself – it will raise awareness of the work the James Whale Fund is doing for Kidney Cancer and it will only be a couple of days out of life so I’ll do it. But my goodness what a dire Hotel. I’m not a houseproud person but even I draw the line when the dust is so thick it changes the colour of the carpets and blinds!!!!

Do the people who own these places go blind within a year of buying a Hotel ? – how can they not see the state of the place. I had no option but to stay and in the end we had to laugh, one of the other people said it was like Faulty Towers and he he was waiting for Manuel to come on duty. Ho Hum.

Going away isn’t too bad if at least you can stay somewhere reasonable overnight !!!

Cancer Registry’s by the way are part of the the NHS; they collate all the coding documents from Hospital Clinics, surgeons, scans, MDT’s then they input every detail of data about individual cancer treatments so that we can get accurate stats about cancer numbers, survival rates, prevelance, geographical variations, staging, male or female/ cancer types/ dates/name of hospital/type of operations/type of scans ……everything that is needed to see what is happening within each type of cancer so next time you read a figure about the number of cases of Kidney Cancer the information will have been collected from all the Cancer registries around the UK.

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Posted under Rose Woodward