The Latest Newsletter from the Arch to Arc Cycle Ride

What fantastic weather we’ve been having over the past few weeks, plenty of opportunities for training before the event!

This is a very quick update newsletter to let you all know that we’ve had to change the route slightly.  We are now travelling to Calais rather than Boulogne, this is because the ferry companies are no longer sailing to Boulogne for financial reasons.

This will mean that we’ll forgo the stay in Dover on the first night and sail straight across to Calais which will give us a nice fresh start on the next day. We’ll publish the day 2 change in route on the web-site in due course so that those of you with GPS devices can upload them if you wish.

In terms of any extra distance it’s marginal so dont worry about that!

By now you should all have heard from Crispin with regards to the arrangements, rooms, shirt sizes, trains, bikes etc etc.  If you haven’t heard from us then please let us know as soon as possible so we can make sure we have everything organised.

As ever if you have any questions then please feel free to call us or e-mail us by clicking on this link

Keep up the training and we’ll be in touch again soon!

Andy Thomas Arch To Arc co-ordinator

amt@jameswhalefund.org

Crispin Dior James Whale Fund Events Team

cd@jameswhalefund.org

Posted under Andy Thomas, Arch To Arc 2011

This post was written by AndyThomas on April 25, 2011

The latest Arch to Arc Newsletter

Hello, 

First of all thank you once again to all of you who have signed up the Arch To Arc. With over 30 riders for this year’s event entries are now closed. So we have the team and we’re all raring to go!

Your Training

We hope you’re fully stuck into your training schedule. If not – don’t worry, you still have a good amount of time to feel fully prepared for the event by following the 14 week plan on our web site. For more information click on this link.  The weather’s been great recently so let’s hope it keeps up so we all have no excuses!

Your Fundraising

Most of you will be well on your way to your personal £1000 target and money is now starting to come into the charity, so thank you for your efforts so far, lets keep it going!

What you need to know

We’ll be setting off from London at 8am on the 23rd June so you need to make sure you’ve made arrangements to be at Speaker’s Corner (next to Marble Arch) by 7:30am at the latest.

We’ll take care of the rest! Ferries, Hotels and rail tickets will be taken care of and food will be provided along the way, breakfast, snacks, drinks, lunch and evening meals.  The only meal we ask you to pay for is your breakfast on the ferry over to Boulogne because we have a very early start on the Friday morning and there wont be time to get breakfast at the hotel before hand (The ferry does a great cooked breakfast!!).

We’ll give you the exact times for the rail trip back to London in the coming weeks once we have the confirmations from everyone (see below), however to help you we anticipate arriving in Paris around 2pm.

What we need from you

Here’s a list of things you need to let us know NOW so we can deal with the final fine details:

  • How do you want to get your bike back?  Click on this link to see the 3 options we have on offer.
  • If you are cycling with a partner or friend then please let us know who you want to share a room with for our overnight stays along the way. If you are cycling on your own, dont worry we’ll sort it for you.
  • What is your shirt size (s, m, l, xl)?  We want to provide everyone with a James Whale Fund cycling shirt as a momento of your efforts and for photo opportunities to promote the fund.
  • Any special dietary requirements you may have?
  • If you want to stay in Paris overnight then please let us know so we can book a rail ticket for you next day rather than on the day we arrive. You’ll be expected to make your own Hotel arrangements for that night if you’re staying in Paris.  For those staying we intend to arrange an informal post ride diner at somewhere reasonably priced where we can all share the costs.
  • Confirmation back to us of your full name as it appears on your passport.

That’s it for now, as ever if you have any questions then please feel free to call us or e-mail us by clicking on this link

Keep up the training and we’ll be in touch again soon!

Andy Thomas Arch To Arc co-ordinator

amt@jameswhalefund.org

Crispin Dior James Whale Fund Events Team

cd@jameswhalefund.org

Things you need to do and think about

Have you got your insurance?

How you want your bike to get back?

Have you started training yet?

 

 

Arch to Arc is a fundraising event of the James whale Fund, with its own unique WEB site. Please note that Unsubscribing to the Arch to Arc updates and any of its Newsletters will NOT exclude you from receiving updates and information about the General work and other events that the James Whale Fund for Kidney Cancer may send from time to time. To do this you must visit the site of www.jameswhalefund.org and take the Unsubscribe option.

 

Posted under Andy Thomas, Arch To Arc 2011

This post was written by AndyThomas on March 30, 2011

All Party Parliamentary Group on Cancer

I was lucky enough to goto this meeting last week at Westminster on behalf of the James Whale Fund for Kidney Cancer.  As with all of these things I never quite know what to expect when I get there.  Sometimes it’s highly interactive and you need your wits about you and other times it’s just a case of listening to speeches that generally dont inform you about anything.

Well, this event was for sure the former!  About 50 people all in  and a mix of MPs, Members of the Lords, Medics, Charities, Patients, Carers. Couldn’t have been much broader if it had tried.  Initially they split us into groups of around 5 to formulate the key questions we wanted the Minister of Care Services to answer.  Interesting that most of the questions revolved around the new devolution of power to the GPs…. there’s much concern about it.

It’s good to see inclusion like this. Did we get the answers we needed?  Well, not exactly, but they were big topics and it would have been churlish to have expected it.  I did come away with copious notes that I took, but I’m not sure there would be a huge advantage in going through them, so I wont bore you with it.

What I came away feeling was that to really make change you have to be out there lobbying for it.  I hate politics, but unless you engage with it I doubt you’ll ever see the changes you want. Cyclically I felt that as an MP it probably didn’t matter which party you were a member of, the key was to be at Westminster, lobbying, networking and pushing for change.  By the time we get to see white papers, policy documents etc the decisions have largely been made so hopefully the James Whale Fund for Kidney Cancer will be in there lobbying for us.

Now with the lack of clarity around the new Cancer Fund we need lobbying more than ever (a point that was well made at the meeting). The biggest danger we have (which I spoke about before in this blog) is that by pushing the responsibilities to the GPs means that we have de-centralised even more than before and I see a real danger that the appeals process for drugs will become worse not better ……. lets keep up the pressure!

Posted under Andy Thomas

This post was written by AndyThomas on February 7, 2011

James Whale Fund for Kidney Cancer welcomes NICE’s approval of drug in the fight against kidney cancer

Good news for Kidney Cancer patients in the UK! This is the latest press release from The James Whale Fund for Kidney Cancer on Votrient.

James Whale Fund for Kidney Cancer welcomes NICE’s approval of drug in the fight against kidney cancer

The UK’s leading specialist kidney cancer charity has welcomed the news that NICE has approved GlaxoSmithKline’s Votrient for the first-line treatment of patients with advanced renal cell cancer. However, following on from recent news that cancer survival rates in Britain lag behind those in other Western European countries, the Fund has expressed concern that more needs to be done.

Rose Woodward, a kidney cancer survivor and Head of Patient Support at James Whale Fund for Kidney Cancer said;

“We are relieved that NICE has recognised the importance that there must be more than one type of drug to treat late stage kidney cancer. Until today there has only been one drug available to clinicians to prescribe to their patients and this has proven not to be effective for everyone. We hope that Votrient will help fill that gap. We have campaigned for many years for more drugs like Votrient to be made readily available because kidney cancer is a type of cancer that is very difficult to treat. It cannot be treated with chemotherapy or radiation therapy like many other cancers. Once kidney cancer spreads, these new drugs are the only hope that patients have to extend their life.”

Broadcaster James Whale, founder and Chairman of James Whale Fund for kidney Cancer and a kidney cancer survivor said;

“Kidney cancer patients will find this approval of the cancer drug Votrient a great comfort so close to Christmas. NICE has been fully aware that the mood of the Government and the general public is that terminally ill cancer patients should not be denied cancer treatment and, after the farce surrounding the refusal of Everolimus earlier last month, some good news is long overdue. As someone who has been directly affected by kidney cancer, I understand just how imperative access to these life-prolonging drugs is.”

Julia Black, member of the Patient Advocate Team for James Whale Fund for Kidney Cancer said;

“The UK’s cancer death rate is currently higher than the European average and NICE’s decisions are having a profound effect on the way we treat our cancer patients and the quality of health care available. It leaves UK kidney cancer patients at a major disadvantage in terms of the availability of state-of-the-art cancer drugs, and this means patients in the UK are likely to die prematurely compared to the rest of Europe and the USA. This is unacceptable. We are forever hopeful that NICE will now see the need for a second-line treatment and look forward to the appeal for Everolimus at the end of February 2011.”

Editor’s Notes:

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

Posted under Andy Thomas, Votrient

This post was written by AndyThomas on December 24, 2010

NHS Cancer Drugs refused – NHS Homeopathy gets a Yes !?!**

Julia Black on behalf of the Kidney Cancer Suport Network, put up a Number 10 Downing Street Petition about the N I C E refusal to fund  cancer drugs: it was cut off in it’s prime when the new Coalition Government stopped all petitions and signing  while they thought about it !! But in the 6 weeks it was up on the site  we got  nearly 2000 signatures, which was pretty good in 6 weeks….anyway we have  just had the answer to Julia’s petition , you can read the response to that here…..
 
 
 
While I was looking at the site to see if the Coalition Gov. are going to continue to  “allow” it’s citizens to petition their Government on issues they feel strongly about, I noticed that a Dr was asking the DOH to force N I C E to appraise Homeopathy, presumably  to find out whether it is cost effective  to use millions of pounds of NHS money on Homeopathy  while they  refuse to fund clinically effective cancer drugs… the Government answer is here… I find this just incomprehensible – they should appraise the  clinical evidence    but to refuse to do that even , well honestly it makes you weep …..
 
 
 
Stay warm……
 
 
Rose   Woodward 

Posted under Campaigns, Cancer Drugs, N.I.C.E., Rose Woodward, Social Medicine

This post was written by Rose Woodward on December 6, 2010

Kidney Cancer Christmas Cards…..

For those Scrooges amongst us like me who haven’t got round to buying their Christmas Cards yet then why not buy them from The James Whale Fund for Kidney Cancer and make a difference.

Let’s face it Kidney Cancer doesn’t get much press and we really need to get this front and centre. So go on, order some from the Fund now by clicking on this link.

Posted under Andy Thomas, General

This post was written by AndyThomas on December 2, 2010

Are we stuck with a new kind of Postcode Lottery?……..

I was lucky enough to go to the House of Commons last night to a Cancer Research UK reception as a representative of the James Whale Fund for Kidney Cancer.

I had high expectations about the meeting given the new announcements about NICE being stripped of its powers and the Cancer Drug Fund, however it was probably unfair of me to have set those expectations. The evening was a culmination of a whole days effort that CRUK had put in meeting MPs with their key 70 or so ambassadors (volunteers). So for them it had been a hard day of lobbying.

The reception was 2 hours long and more of an opportunity to grab a quick drink and network. There were some short speeches to reiterate the work CRUK is focused on. Their focus is on research and early screening and to that end they spend around £350m each year, and I’m glad for that!

I managed to corner Harpal Kumar (CEO of CRUK) and I asked him what his views were on the new announcements. His views seem to echo many of ours (and without quoting him directly) he felt that now that we are moving to a more localised value based system the postcode lottery could potentially worsen and we need to keep a strong eye on it to ensure that there is full transparency. One way to measure this would be to maybe have direct comparisons for each SHA area, so for example, it would be easy to see if an SHA was failing if the outcomes for a Kidney Cancer patient were worse than another area.

At the moment, this is still all hypothetical, because the Government is yet to consult on its plans for a value based system. However, I still think we’re stuck with this whole Qualy nonsense whatever happens, it’s all “Value Based” to me. I’ve always wanted to see the real calculations behind Qualy but have only ever been told in the most patronising fashion “It’s too complicated for the likes of you”. Well if it is or isn’t I’d like transparency around it and be able to have public access to it.

I worry; the whole “Lets put the power into the hands of the local people” isn’t solving anything as far as I can see and may well make it worse. It also gives the government the opportunity to potentially wash their hands of it saying “it’s down to each local area to manage its own budget and we’ve given all we can with the new cancer fund”. OK, so this is just my own personal view and I could be being overly pessimistic.

Suffice to say I believe that the battle with the Postcode lottery and access to new Cancer Drugs is far from over. The sooner the authorities wake up to the fact that beyond surgery there is NO CURE for Kidney Cancer and the new drugs are the only available treatment. Drugs that not only extend life but also give quality of life. If it’s good enough for other countries such as the USA and other parts of Europe then why not the UK? Sorry Mr Cameron but if you can afford to have a personal photographer paid for out of tax payers money then methinks priorities are still a bit of a mess.

The evening was fantastic and thank you to CRUK for letting me come along.

A slight aside.  It was of some comfort to me that the work CRUK does is complementary rather than overlapping with the work the James Whale Fund for Kidney Cancer does. To me they offer different services to the patient. This is a good thing as one of the thoughts I have struggled with in the past is why we have so many different cancer charities all seemingly doing the same thing and all after the same funds. Well, there is a differentiation in what they all provide e.g. direct patient support, palliative care, lobbying, awareness raising, research etc etc i.e. there is room for everyone as long as we stay focused on our core strengths and missions. Also, whilst CRUK is clearly a strong lobbying body and can exert enormous pressure when required it’s important to have multiple organisations lobbying for the needs of patients with different cancers as well (attacking from all sides for want of a better way of expressing it).

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Posted under Andy Thomas, General

This post was written by AndyThomas on November 4, 2010

N.I.C.E. To be stripped of its powers

Today has seen the long awaited decision to strip N.I.C.E. of its powers that enabled it to ban the use of much needed drugs. For the Kidney Cancer community this can’t come soon enough. For years now we’ve been fighting for our rights for new cancer drugs and treatments, for many this decision has come too late but nevertheless we’re grateful that common sense and decency have prevailed.

I have my concerns though.  Yes I’m delighted that this quango has had this controversial powers removed and it’s been downgraded to an organisation that will help write guidelines, but what does this really mean?

N.I.C.E. was only ever supposed to be group that offered guidance anyway, and why is it going to take until 2014 to action this? Surely that should be instant.

Also, are we moving into an even more ill defined postcode lottery? Who will really decide what drugs are going to be made available to you as a patient? The doctors, PCTs, some “to be defined” local committee? I’ve seen little clarity on this as yet and I worry that we could be entering into an even worse era.

It’s great to see N.I.C.E stripped like this, but let’s not take our eye off the ball. I’m going to the house of commons on Wednesday this week and I’ll be interested to hear other people’s views on this. I’ll report back.

Posted under Andy Thomas, N.I.C.E.

This post was written by AndyThomas on November 1, 2010

Article Cancer Drugs Fund to get £200m a year

Rose Woodward – Patient Advocate

At long last…… confirmation that the

Cancer Drugs Fund to get £200m a year  

There was good news for cancer patients in England this week after the government confirmed it will provide £600 million for a three-year fund to improve access to new cancer drugs on the National Health Service.

There had been fears that the pot may be reduced under the current spurt of cost cuts, but the Department of Health announced yesterday that £200 million a year will be made available for the Cancer Drugs Fund from 2011 to 2013. 

The move is designed to help patients get better access to therapies recommended by their specialists, even if they have not been approved by cost regulator the National Institute for Health and Clinical Excellence, giving clinicians yet more power to dish out the treatments they feel are the most appropriate.

In addition, it is hoped that the extra cash pile – which is separate from existing Primary Care Trust budgets – will also help to improve the country’s ranking in terms of the provision of innovative cancer treatment to patients, as it is low on the list compared with many of its global peers.

Just a few weeks ago the government said it is has also set aside £50 million for an interim fund to help patients get treatment with drugs that have the potential to extend survival or improve quality of life before the fund ‘proper’ is launched next year, with clinically-led panels deciding on how to spend this money for patients locally.

The move does not take away from NICE’s remit, as the Institute will continue to appraise most significant new drugs and will have an important part to play in the government’s plans to switch to a system of value-based pricing for new medicines when the current Pharmaceutical Price Regulation Scheme expires, it said.

“Our longer-term plans will change the way we pay for drugs so that patients get better access to drugs and the NHS and the taxpayer get better value for money,” commented health secretary Andrew Lansley.

Consultation launched

The DH has now kicked off a consultation over its plans, seeking public opinion on the arrangements and other proposals for the fund’s operation, including ways in which patients and clinicians can be supported to make the best treatment decisions and what the scope of the Fund should be.

The Association of the British Pharmaceutical Industry has welcomed the launch of the public consultation and the government’s commitment of £200 million a year to help boost patient access to innovative cancer treatments.

Director-General Richard Barker said the consultation raises many important questions about how the fund will operate, such as “whether the fund should be administered at regional or national level and how to ensure that NHS cancer patients across England have a fair, timely and equal opportunity to benefit from the fund”.

The consultation will run until January 19, 2011.Its really important that as many cancer patients and families complete the consultation document and let the NHS know how we feel and to stress the need for this Cancer Drugs Fund to be continued for as long as some people in the NHS wish to refuse treatment to cancer patients.

 Please contact me if you would like a consultation document sent to you by email..

contact@kidneycancersupportnetwork.co.uk

or download it from our patient forum at     www.kidneycancersupportnetwork.co.uk

Rose Woodward

Posted under Afinitor(aka Everolimus/RAD001), Avastin, Campaigns, Cancer Drugs, General, N.I.C.E., Nexavar, Patient Day 17thNov2010, Rose Woodward, Social Medicine, Torisel

This post was written by Rose Woodward on October 28, 2010

What’s new in Nova Scotia?

It has been so long since I posted to my blog, I don’t even know if this is still active as a site. Someone please tell me if I should be starting a bog somewhere else.

The latest news is that both scans this year have been clear.  My Creatinine is down to 90 and eGFR up to 57. I was seeing a Nephrologist for a few months, who was watching my cholesterol, but that is now down under 2 so he did not want to see me again.

I have however been laid off just over a week ago, and didn’t see it coming. I have immigration issues, and can’t work anywhere else, and my not get unemployment.

I am using my time wisely I hope, taking care of my chickens, cockerels  just learning to crow.. oh and I have a DVD called punch up your walk, and am building up to a 4 mile walk every day, exercise I was not getting while working.

Posted under Gemma A S.

This post was written by Gemma A.S. on October 22, 2010