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

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 Whale in Wales? and Rolling Stones?……. Whatever next!

There’s lots of activity at the moment on the Kidney Cancer front, and it’s such a pleasure to see the momentum picking up.  Here’s a few highlights …..

  • Clive Stone is “rolling” out his campaign again for the new drugs to be made available.  Please, please all you Kidney Cancer patients/families/friends respond to Clive’s request at this link.  Thanks to Clive’s efforts we had enormous success last year when we all campaigned outside the NICE HQ in London, so lets see if we can do it again!
  • James Whale will be hosting and event in Wales, Swansea at the Dragon Hotel on 21st November– “Whale in Wales” I suppose you could brand it.  This sounds like a great night out, if you want more information then check out this link.  As I’ve said before these evenings are always great fun.  If you’ve ever had anything to do with James before then you’ll know he’s not exactly backwards in coming forwards which always adds an extra spark to any event.
  • On top of this a lot of work is going on in the background leading up to the Kidney Cancer Patients Day on 18th November.  Make sure you all sign up to this, it’s the day after my birthday and I’ll be deeply offended if you don’t come along !

On a personal front it’s been one of those weeks where I appear to be doing nothing and yet there is so much going on I hardly know where to start.  A definite feeling of spinning my wheels.

Work’s in complete turmoil as we wait patiently to discover whether we’ve got jobs or not, motivation is down on a grand scale, and they’ve set the date to mid/end of November to decide our fate.  This date has slipped twice so far, so you can only imagine just how much people’s sensitivities have risen.

Another thing that’s been praying on my mind is that my Father’s also due to go into hospital next week for an operation so I’m going to have to figure out a way of getting up to Yorkshire to see him.  He’s having a pretty rough time at the moment with one thing and another, just wish we lived closer.

Lately I’ve found myself focusing more and more on things I can control in my life rather than things I can’t (probably a good thing).  So, to that end at least I have a plan in place if I’m made redundant.  My plan is to take a year out and focus my energies on the charity work and make sure that we make the Arch to Arc a success the first year round.

Also I want to be able to help The James Whale Fund for Kidney Cancer out as much as I can on the IT front to help build the brand.  As a starting point I had a great night out with Paul Fox of Fonda on Monday to talk about all things “geek”, so watch this space over the coming months.

It is a risk to take a year away from work I admit, but I think that it’s a risk worth taking, and to be honest I can’t see it looking that bad on my CV if I’m filling my time with things that are productive.  My real hope is that the time out will lead to other things as I always believe that things have a way of working themselves out as long as you don’t sit on your behind doing nothing.  I now worry more about not taking this opportunity than I do about any financial impact, if I dont take it it will be an opportunity lost.  Let’s see!

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Posted under Andy Thomas, Arch To Arc 2010, Oxford Support Group Demonstration 27-Aug-08, Patient Day 18thNov2009

This post was written by AndyThomas on October 28, 2009

That Was a Long Weekend….

I’d forgotten just how geeky and nerdy I can get. I’m a bit like a dog with a bone when it comes to computers. It’s not that I’m any great whizz kid at them I think it’s just that I can’t stand to let them beat me. That’s how it felt this weekend getting this blog site up and running…. boy did I learn a lot, and thanks to Rose for all the input and ideas. Not content with doing that I also stupidly upgraded the WIKI software on the Kidney Cancer Resource site as well on Friday night, one day I’ll learn. I think my wife’s still speaking to me … not sure, I’ll have to test the water later. Wish me luck!!

Anyway, I hope it adds value to our Kidney Cancer community, and feedback is always welcome. I can’t promise to fix everything but I’ll do my best as and when I get a spare few mins.

I’ve been so heartened over the last few weeks as we led up to the demonstration on the 27th August to see how everyone has pulled together to make things happen. It just takes one spark from someone like Clive Stone and it all seems to have snowballed. I think that’s what really spurred me into action to create a communal blog space, I’d been thinking about it before because of the feedback I’d been getting on the Kidney Cancer Resource, but to be honest I’d put it to one side.

I was also amazed by the crew over in the US on the ACOR list, they really helped push the message on NICE as well by writing en-mass. Not sure why I was amazed, I shouldn’t have been because I know that community is so strong. I’ve added Manuel Lopez’s blog (“Our Life With Kidney Cancer”) to the blogroll on the left hand menu bar, some of you may want to read his diary, and he was key in helping push the message in the US. As and when we come across related blogs I’ll add them in, just let me know.

Let’s hope we can keep going to get these cruel people at NICE to change their minds, and lets also hope and pray that the PCTs start changing their attitude to exceptional circumstances, I think it’s appalling that they seem to be closing ranks.

I know Clive has some ideas brewing, and for those who haven’t already see it, check out his latest call to arms:

NICE PROTEST – KEEPING UP MOMENTUM

First of all a big thank you to all who came to London on 27th August. I am aware that many of you had travelled long distances at some considerable cost to yourselves and it was greatly appreciated. It was particularly good to meet so many new friends, and to have the valued support of those of you who are already taking Sutent.

It was a great turnout and a very special occasion, and demonstrated to all just how determined to get this cruel NICE decision reversed.

We had terrific media coverage and their interest in our cause continues as they still have an appetite for more. They have been pressing me for news of our next event as they have identified that we have touched a nerve with the great British public.

I am resolved to fight this until we win, and I am asking you all to please join me again as we must now regroup and consider our next little trip to London which must be even more remarkable than the first!

1. We now need to quickly build a database of supporters for future events. Therefore, if you want to become involved can I please ask you to contact Jan at: janstone50@hotmail.com with your name and contact details so that we may contact people.

2. The James Whale Fund have agreed to put on their website, (www.jameswhalefund.org), our t-shirt “front” and “back” logos. I would suggest that you then buy plain white t-shirts and have the design printed locally. This would then avoid having to distribute campaign material, as we are just not set up for this.

3. We could also consider wearing our t-shirts on the same day each week, say on a Saturday, as we go about our normal daily routines. This would gradually become noticed, and increase awareness all around the country.

WE ALL DESERVE THE RIGHT TO LIFE!
Clive Stone
Justice for Kidney Cancer Patients

Hopefully the next event will be the one that tips them over the edge and forces them to do the right thing.

Right, I’m off to bed!

Posted under Andy Thomas, General, Oxford Support Group Demonstration 27-Aug-08

This post was written by AndyThomas on September 8, 2008

After The N.I.C.E Demonstration………

The demonstration at the NICE HQ was a fantastic success, nobody can deny that. The back-pedalling from NICE since then bears testament to that and a great debt of thanks goes to those who made it happen.

To make the announcement about the eye drug on the same day as the demonstration shows just how low these people are prepared to go, they knew we were coming, we made no secret of it. They were even sniffing around the KCR website the day before to gather information on it. (In case you’re wondering how I know that www.sitemeter.com lets me see what IP Address’ are visiting the site and what pages they are viewing, I clearly can’t see individaul names but I can see network providers and larger organisations, and on that day it said N.I.C.E. … they came on 3 times).

The Eye drug announcement was just another one of those heartless and insensitive actions we’ve come to expect from a bunch of people who announce they have a £1.75 billion surplus in the NHS and yet refuse to let patients have the drugs they need, be they cancer victims or otherwise. Maybe they get paid bonus’ based on how much they can come in under budget?……..no, that’s just too cynical …… isn’t it? Also if they’ve had plans to readjust the QALY calculations then why did they wait to make that announcement? and why do they still not publish the algorithm for everyone to see? Theyr’e not the only people to understand comlpex statistics.

It’s all gone very quite, and I reckon they’re very thankfull for it.

I suspect we still need to tread carefully and ensure that we keep the pressure on. NICE have made “strange” decisions before and there’s nothing to say that they wont still turn around and say no to the drugs. We need to be on our guard. I’d like to see them make statements around any new drugs that come on the market that have the blessing of the experts (i.e. the consultants), I want to see statements that mean this will never happen again, and that never again will cancer patients be put under such extreme stress.

I believe that the real test of their intentions will be shown with the results of the next few PCT appeals. If they all go through on the nod then great, but I would hazard a guess that wont be the case. If I was a betting man I would expect them to now think that they’ve lulled us into a false sense of security only to deal a bitter blow next year.

Let’s keep the pressure on and keep on writing to them and the media and let them know that we’ve not forgotten. We all know that if we’d all sat back and done nothing we wouldn’t be in a position now where they’re back-peddaling like this.

I’m going to try and insist on a direct reply from my local MP. I cc’d her (Claire Ward) on my letter to Andrew Dillon. Her original response to another letter I wrote was weak. Although Dillon replied I’ve heard nothing from her. I also wasn’t happy with his reply to me so I’ll also be asking for clearer responses to some of the questions I gave. I’ll publish these as and when I get round to it.

Posted under Andy Thomas, Oxford Support Group Demonstration 27-Aug-08

This post was written by AndyThomas on September 6, 2008