Kidney Cancer Resource Has Moved…….

Well, as stated in my previous blog Kidney Cancer Resource is going to gradually close down as we move the information across onto the James Whale Fund for Kidney Cancer’s web-site.

We’re doing this so we can pool our resources together and work as a wider and less diluted team within the UK.  So to that end we now have the combination of the James Whale Fund for Kidney Cancer, Kidney Cancer Resource and the Kidney Cancer Support Network all available via the James Whale Fund website.

As a starting point the fund’s web-site now has a “Rolling News” section on their main page under the main banner of “Kidney Cancer News”.  This has replaced the Rolling News section in Kidney Cancer Resource.  So for those of you who want to keep up to date with the latest news articles relating to Kidney Cancer across the globe…. then this is the place to come.

You will also be able to keep up to date on all the up and coming events the fund is organising as well as see what the fund is (and has) been doing behind the scenes to push the agenda for Kidney Cancer.

You can still access the old Kidney Cancer Resource web-site from the main page of the James Whale Fund by clicking on the old Kidney Cancer Resource Logo on the right hand side.  Given the many many man years of effort that has gone into the Kidney Cancer Resource site it makes sense to keep the information available for a period of time.

I see this as a great step forward and I hope others do to.   It brings a new start to 2010, there is much to do over the course of this coming year and I’m looking forward to the challenge!

Please sponsor me at either VirginGiving or JustGiving

Posted under Andy Thomas, General

This post was written by AndyThomas on December 31, 2009

2009 Update and my Christmas wish

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

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

This post was written by Rose Woodward on December 24, 2009

A Bit of Clarity On My Previous Blog, I Hope ……

Well, it seems I’ve upset one or two folks in the Kidney Cancer Community who seem to think I’m suggesting that the salaries in the NHS are justified etc.  I can’t go back on the fact that I believe you pay for what you get and if we don’t pay comparable salaries, or at the very least make them competitive then we wont attract the right calibre of people that we need to sort the mess out.  Folks generally wont do it for nothing, sad fact of life.

Again, do I think we have the right people in place… probably not in all cases, however it seems that the piece we are missing is accountability.  If you don’t make people accountable for their actions then they wont care if they do a good job or a bad one.  It should have less to do with what people are paid and more about what they do for that money.

What we can’t see at the moment is a set of people in place that really care about the patients, people that appear to have any sense for what is morally right.  I’m not talking about Drs and Nurses, so please let me discount them from this.

We all have views on how the NHS could be run better if we were in charge however, for me personally I’d happily pay for managers that actually implemented strategies based on common sense, strong leadership, based on what they see around them and on the “shop floor”.  I don’t want to pay for ones that just implement what they are told to do from Whitehall (any muppet can do that).

If a decent manager could save millions by making real change (that he/she is accountable for) then why would I resent their salary? I’d be grateful that we have people in place that care, know what they’re doing and have the interests of the patients (shareholders) at heart.  What I do resent, which is what I think others do to, is the seeming gravy train of people that have no accountability and still get huge payments no matter how good or bad they are.  The current sheer waste is incredulous.

Don’t get me wrong, with idiots like Sophia Christie around who are able to spout offensive rubbish about a subject they clearly have no knowledge of then it’s fair to say we probably don’t have the right calibre of people at the helm.  She still clearly has no comprehension about the disparity around the drug approval process (more on that another time).

I can’t change my views on quality over quantity, or (to use someone else’s analogy) I’d rather pay a little extra for a real bit of cheddar that some cheap piece of rubber that falls below the mark.

So, sorry if I’ve offended, it’s not meant and I haven’t gone completely mad (not yet), I still want to see change … especially with NICE and the PCTs!

Please sponsor me at either VirginGiving or JustGiving

Posted under Andy Thomas, General

This post was written by AndyThomas on December 22, 2009

Arch to Arc Christmas Update. 27% of Target Reached!!…….

Things are really starting to push forward, we’ve had one or two more riders setup their VirginGiving pages and we’re topping 27% of the target already!  This is way beyond where I’d hoped we’d be by this time.  Sally is storming away with sponsorship money, over £1000 in a mater of weeks!! Having said that this is no time to get complacent and we still have a long way to go to get to that £20,000 goal. 

As another reminder for those wishing to ride, don’t forget to get your deposits in ASAP, here are the instructions again (click this link to my previous blog). Half the riders have already signed up, so don’t delay or you’ll miss the opportunity to ride with us this time round.

As for next steps, well, I’ll be meeting up with the James Whale Fund for Kidney Cancer on the 15th January 2010 to look at booking the Hotels and Ferry/Rail journeys, and as I said previously I’ll be looking to do an exploratory trip of the route towards the end of January (and I know others may well join me).

Outside of this things are ticking away nicely.  We have the prospect of getting a couple of major sponsors which will be amazing.  I know we have PR in place and that we’ll have coverage at the start and finish line but if anyone knows how to engage any other media channels between now and the big day then please let me know.

Anyway, that’s it for now.  Have a great festive season! Don’t worry about over doing the mince pies and turkey ….. the training starts for real in January!!

Merry Christmas!!

Please sponsor me at either VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on December 22, 2009

NICE 2009 Conference Thoughts ……..

It’s been a week or so since my last blog.  Mainly because of work commitments but also because of the usual family chaos around Christmas time …..  present buying, playing in gigs, travelling etc etc.

This year will only be the 2nd time in over 20 years that we haven’t spent it with family, for no other reason other than work and bad planning, but never mind we’re spending it with some local friends instead, which should be fun and will make a change.

Anyway, I was reading the report from the James Whale Fund regarding the NICE 2009 Conference, and a few things sprung to mind that we often forget about in our fight for drugs.  You can find the report on the front page of the James Whale Fund site … Click on this link.  A big thank you has to go to Sharon Deveson Kell at the Fund for putting these notes together.

There were some really interesting statistics that were pointed out.  Here are just a few that struck me

  • 1 in 5 new medicines are discovered and developed in the UK – This just shows how far ahead of the curve the UK is in terms of R & D and yet what is so frustrating is that we don’t get early access to these drugs.  To me it just shows how much bureaucracy NICE puts in the way of a decision.  Maybe closer links to the pharmaceutical companies at an earlier stage in the life cycle would speed this up.  I find it so hard to believe that other countries are able to approve drugs ahead of us, the only reason I can see is cost.
  • For the pharmaceutical industry to make an adequate ROI they need to spend £800m per product on research and they will not recoup these costs for about 25 years; this is a high risk industry – I totally agree with this, and I’ve written about it before.  Often we hear about the grotesque profits the pharmas make each year, and yet we forget how much they have to pump into R & D to get a drug to market.  How many fail? Personally I’d rather they were out there making a huge profit that enables them to invest than being squeezed by regulation that will make them shy away from it. Simple risk and reward logic, love it or hate it, it’s a fact.
  • Prescribing medication for chronic diseases, such as hypertension, can save the NHS £222m per year - This harps back to a previous blog after the Liberal Democrat party conference.  These are the things they should be focusing on.  I agree that we need to take a serious look at the disparity of drug distribution between rarer and common cancers, but for heavens sake lets look at even more obvious ways of saving money as well. As we dive deeper into one of the worst recorded recessions budgets will be squeezed even tighter, and if we can’t deal with these more obvious things then our battle is going to get even harder.

One other point I’d like to make that wasn’t dealt with in the NICE report is that of talent.  A lot is mentioned about the huge salaries and expenses that some of the health based senior management are paid.  It maybe true to say, (a bit like the MPs expense scandal this year), that there are discrepancies that need investigation, but let’s not lose track that if we want top talent to run our services then we have to pay for it.  We can’t expect everyone to be totally altruistic, why would you accept a role in health that pays half as much as you could get paid in industry?  We do need to be shown in a transparent fashion what people are paid and how that stacks up against comparable jobs in industry, however  I don’t believe that individual’s salaries need to be disclosed at all levels, just at the grade level. It works both ways, if we had these figures to hand we’d soon see just how little nurses get paid for example. We want nurses to have degrees and take on more and more responsibilities and yet we’re not prepared to pay for that ……. crazy.

I’m sure lots of folks wont agree with my last point, but I do sincerely believe that we have to pay for quality.  Do we have the right management in the NHS and surrounding services right now? Well, I’m not qualified to say yes or no to that, but I do wish we could sort out the red tape and hoops that get put in the way of decisions.  Decisions that effect patients! I firmly believe that no matter how good a manager you are that this must slow you down and discourage common sense.

Thanks again to the James Whale Fund for taking these notes and lets keep the debate alive into 2010!

Please sponsor me at either VirginGiving or JustGiving

Posted under Andy Thomas, General

This post was written by AndyThomas on December 21, 2009

Kidney Cancer Canada friends

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).

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

This post was written by Rose Woodward on December 11, 2009

Kidney Cancer Cycle Ride Reaches 20% of Target!

We have over 7 months to go and within just 2 months we’ve already reached 20% of our £20,000 target.  This is fantastic news!  We still have well over 20 people (closer to 30) who want to do the ride so I’m very encouraged that just 6 people have already managed to reach 20% …. Just think what we can achieve once everyone starts fundraising.

To that end I’d just like to remind those of you that have signed up that now is the time to get you deposits in and start your fundraising efforts.  The full instructions are available here in my previous blog

At the James Whale Fund we’re really keen to get the hotels and ferries booked in January so we can relax on that point and focus all our energies on fundraising. So please please if you want to come on the ride get your VirginGiving pages created and your deposits in now, and remember, we’re restricting this to just 20 people in year 1 … so don’t dawdle or you’ll miss the boat … literally!

Over the course of the next few weeks we’ll also be checking out the route. I’m debating cycling it, but I’ll need to see if I can get somebody willing to follow by car so I have some support …..  3 days in the same clothes …. not a pleasant thought, especially for those sitting near me on the train on the way back.

I’m still very excited about the whole thing and can’t wait to get going … real French bread, soft cheese and the odd bit of Red Wine of course …. Heaven!

Please sponsor me at either VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on December 7, 2009

Cancer Treatment Post Code Lottery Report – Too late for many!

Well would you believe it, a report out today from the Dept of Health confirms that we cancer patients are subject to a Post Code Lottery – please tell us something we don’t know.  How much did this report cost I wonder?  You couldn’t make this up!!  It says that almost all Primary Care Trusts (PCTs) failed to match the best cancer survival rates in Europe.  We have known this for years.  This country now stands alongside Poland and the Czech republic for five-year survival rates in 16th position.  Where have all the extra billions from tax revenue gone, input into the NHS by this government - we know don’t we?  Now they have identified the problem perhaps they will set up yet another money-pit department for the Very Senior Mangers to come up with some ideas over the next ten years or so!

This comes as no surprise to any of us.  Speaking as someone with advanced kidney cancer and chair of a large KC patient support group here in Oxfordshire, I know this from first hand experience.  We have lost so many from our group.   Many of whom had little option but to spend their last precious months battling with Oxfordshire PCT trying to gain access to Sutent (sunitinib) before the final NICE decision.  Most PCTs had different policies then (and probably still do).  What was most shocking was that our PCT made the decision NOT to fund Sutent at a meeting where no specialist medical Oncologist was even present, and they were sitting on an unspent surplus of £2 million!  Despite patients meeting with the Chief Executive and a Public Health Consultant, they still would not shift their position, or even agree to reconsider their policy – and so more patients died without the option of Sutent.  The clinicians did what they could but their hands were tied by this draconian policy.  The PCT chief executive has since been promoted to chief exec of our SHA.  If their performance management bonus scheme rewards those who make a financial surplus whilst denying patients life extending drugs then something is very wrong!

At this special time of year it is important that we all pause for a moment and remember these brave patients together with all those others we know, and their loved ones they have left behind.  Many came along with us to the London demo at NICE HQ and as a result of their actions gave vital extra time for others with this dreadful cancer.

It is now time for all of us to join together, regardless of our type of cancer, and to speak out with one voice to demand the best for all of us.  We are fully paid up citizens and it is time to show the powers that be that we will no longer accept the status quo – IT IS TIME TO RAISE THE BAR!!

Posted under Clive Stone

This post was written by Clive Stone on December 1, 2009