Kidney Cancer Bloggers Have your Say

http://www.kidneycancersupportnetwork.co.uk/forum/viewtopic.php?f=58&t=461

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NHS to use four years of unspent taxpayers accumulated funds totalling £1.7 BILLION to pay for managers’ redundancy packages and restructure costs whilst cancer patients continue to be denied life-extending drugs and are left to die with no effective treatment!

Contrary to what we have been led to believe the NHS has in fact carried forward massive “underspends” for at least 4 years whilst all the time denying cancer drugs as “too costly” and subjecting many very ill patients to callous processes (which vary between PCTs) of having to plead for drugs to stay alive longer. It now appears that the DoH will be using these unspent taxpayers/stakeholders funds for lining their own pockets with enormous redundancy payments based on already over inflated salaries (more than 300 NHS people earn more than the Prime Minister – according to the Daily Telegraph) after having stashed cash away over the years by denying patients drugs. You couldn’t make this up!!!

Here is the Evidence

Health Service Journal reports 13th July 2010
“NHS chief executive Sir David Nicholson has warned the Department of Health may seize control of the 2 per cent it told primary care trusts to set aside for “non-recurrent” spending this financial year.
The requirement to set aside the 2 per cent – approximately £1.7bn – was set out in the original NHS operating framework for 2010-11, published last December.
Sir David told HSJ at the time the funds should be used to “fund the costs of change”, including reconfigurations and redundancies.”

Health Service Journal reports 15th July 2010
“The Department of Health has agreed NHS Employers can use a £1.8m surplus from its core contract “to assist their cash flow and balance sheet position” and has signed a new deal with the organisation.”

BBC Reports 16th July 2010
“The NHS in England has set aside nearly £1.7bn this year for reorganisation – more than seven times what it aims to save on management, the BBC has learnt. The fund – held back from the front line – will help pave the way for GPs to take over budgets from managers.
NHS boss Sir David Nicholson said it was there to kick-start the process.”

Letter to all NHS Chief Executives dated 13th July 2010, from Sir David Nicholson, Chief Executive of the NHS, states
“(a) Increasing financial transparency and consistency
Within those requirements we will strengthen our assurance mechanisms during the interim period to keep a tight grip on finances and to standardise our mechanisms for system management. This will include specific monitoring and accounting for:

• financial support for named organisations;

• the detailed application of the 2% non-recurring funds to support delivery of change;

Whilst NICE continue to ration effective cancer drugs using their unfathomable formulae, we have no alternative but to lobby this new government to bring forward the promised Cancer Drugs Fund before it becomes too late for many more patients. Why should cancer patients continue to be denied effective drugs due to cost alone when many ineffective so-called managers are escaping with huge payoffs at our expense!!

You wouldn’t treat a dog like this and at least they have the RSPCA!!

Clive Stone
Founder – Justice for Kidney Cancer Patients
16th July 2010

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Posted under Cancer Drugs, Clive Stone

Hi. I’m new here. I’ve been blogging my training for Arch to Arc on my own site, and knowing that I’d be sure to write up my experience once it was complete, Andy asked my to sign up and post them here, too. So this is what I’ve just published on my site.

Trevor Coultart, Arc to Arc rider 2010.

 Well, we did it. Eleven cyclists. 266 miles. Four days. And only one puncture.

Marble Arch, Thursday 8am.
Eleven riders raring to go.

What an amazing experience it was. Apart from a few hills that were damned hard work, I loved every minute. Heck, even the hills weren’t that bad, as a long climb was almost always rewarded by a fantastic sweep back down the other side.

In f act, I was amazed at how I got on. The first day alone was the longest I’d ever ridden, so I thought that the next day would be hard work right from the start, but I was delighted to discover that I felt just the same on day two as I had on day one. And so it continued. My thighs are aching, and I’m a bit saddle sore, but apart from that I feel absolutely fantastic.

I’m quite sure that there’s no way I could have undertaken such a ride alone. The random bunch of cyclists who came together to do this ride turned out to be a lovely group, and it was a pleasure to ride with them. And an ideal number, too: enough to group and ride as a bunch, to help one another along, to encourage, support, cajole, and mock one another. And few enough that over four days we could actually get to know one another and it soon felt like riding with friends. I suspect that would be less likely to happen riding with a much bigger group. It was great to have the benefit of a couple of experienced club riders who could advise us on all sorts of technical, physiological, psychological and practical issues, and also others who, like me, had never done anything remotely like this before. At least a couple had hardly ridden since childhood until signing up for this ride. But we stuck together, and all made it in one piece. We’ve all swapped contact details; I hope some of us manage to stay in touch.

And we also couldn’t have done it without the support of an amazing crew. At every stop – or whenever we needed – we had an endless supply of water, energy bars, snacks, sweets available. And picnic lunches of fresh french bread, cheeses and meats, cakes, crisps – as much as we needed. All served up from the back of a big white van.

Arc de Triomphe, Sunday 2pm.
A well-earned glass of champagne or three.

Overall, I’m so utterly glad I’ve done it. People have asked if I’ll do it again next year. Initially, I said not. But it occurs to me that if I could persuade a few friends to do it with me, I might consider it. Anyone fancy a challenge?

This is just a short report until I can get myself sorted to write up each day in detail. I’m back at work today (!) so not sure when I’ll get started on it.

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Posted under Arch To Arc 2010

We’re so close now to the event,  just a few days and we’re all off to Paris and if the weather holds like it is today it’ll be fantastic !

The team have raise over £22,000 so far and the contributions still seem to be coming in…. what an effort!

It sounds like the team have been training hard and every-one’s physically ready, but don’t forget to give yourself a few days off before we go, time to taper off as they say.  My final ride will be on Sunday (the London to Brighton) and I’m just going to take it nice and easy and enjoy the day.  I can’t do anymore than I’ve done and my experience from doing it back in March tells me that it’s worth being well rested up before we start. 

Also If you can get to your local bike shop before we go then it’s worth getting them to give it a quick check over, however a certain amount of spares will be taken and we have a spare bike in the support van if all else fails.  There are cycle shops along the route (at least in Boulogne and Aberville so we can get parts if needed, they all seemed to be very helpful)

As before, if you’ve got any questions about logistics or anything then let me know, I’m taking the whole of next week off so I have plenty of time to run around for people if needed.  We have a final pre-event meeting over at the James Whale Fund on Monday where we’ll do our final checks.

Everyone should have received their Arch to Arc tops by now, and here’s a picture of one of the riders modelling it for us …nice hip work Trevor!!  Makes it all seem much more real, the excitement for me is palpable.

The Official Arch to Arc Shirt

I’ve been forced into riding my push-bike into work this week due to a flat tyre on my motorbike   I was only intending to ride in one day this week, but never mind at least the sun’s out.  My BMW dealership love to delay things, I almost feel guilty asking them for anything, it’s like they’re doing me some big favour allowing me to buy one.  Anyway, enough of that I could rant for hours on how badly I’ve been treated as a customer.

As for next year’s ride, I’ve been plodding around the streets of London during my Lunch-hours going into as many cycle shops as possible asking them to put up a poster and leaving them with a batch of leaflets, they’ve all been pretty nice about it so far and CycleSurgery and Evans Cycles have both given me contacts in their head office marketing departments. 

We’re looking to learn from this year’s ride and extend it to 50 people next year so it’s going to mean a lot of leg work to get the riders.  Jane and the kids have agreed to hand out leaflets at the London to Brighton event this weekend to see if tapping into a targeted audience has any impact.  I’m of the belief that doing as many of the Cycling Sportif’s as possible this year and handing out leaflets and talking to people may be the best way forward.  Anyway, nothing to lose by trying that approach.

If you’re reading this and still want to donate then please click on one of the links at the bottom of this blog, if we could get to £25,000 this year … well, wow!!

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

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Posted under Andy Thomas, Arch To Arc 2010, Arch To Arc 2011

I have been writing to  a wonderful lady – the partner of a cancer patient called Ian Bowers. Ian and his family have been forced to pay for their own treatment for Ian cancer – the drug Ian’s Dr wants to prescribe for him is SUTENT. But Derbyshire  Primary Care Trust  ( using the word CARE  and TRUST in their title seems outrageous  for this organisation)  will not pay for Ian’s treatment despite the fact ( scans to prove it ) the drug is working and is holding the cancer at bay, despite the fact that there is no alternative treatment, for Ian’s condition which is a very rare cancer, and despite the fact that Derbyshire  PCT is sitting on nearly  £2,000.000 – TWO MILLION, YES ………….TWO MILLION POUNDS……….. UNDERSPENT IN THEIR BANK ACCOUNT.

How can this happen in the year 2010 that a patients needs care and treatment – the money is there to pay for the treatment, the treatment is working but the highly paid administrators and NHS managers decide they know better than the Dr.s

This is a terrifying picture of what is happening to our wonderful NHS now the wrong people are in charge of making decisions about our cancer treatment.

I received this from Jane and with Janes permission, I would like to put it here  so that anyone coming to this site  will know what our fellow patients are going through. I find it almost unbearable to read.

Today was the NHS meeting that will decide whether Ian Bowers lives or dies. Of course no-one within the organisation had the decency or compassion to inform us of the outcome by phone. As it is also a bank holiday and the powers that be will doubtless have both Monday & Tuesday off we expect a letter will arrive at the end of next week. Ian has been vomiting for 2 days, which he has rationalised as “a bit of dodgy fish” but I think it is stress. The atmosphere crackles with tension. Our son has sensibly departed to his girlfriend’s house, perhaps sensing any slight misdemeanour on his part will cause WW3.

I consider myself a liberal pacifist but at this present moment I can understand what drives people to snap: to jump off a bridge or drive their car at 100 miles an hour into a wall; or lash out at someone who dares to cut in front and nonchalantly steals “my” parking space. If this was America I could empathise with the kids that take their parents’ guns and let loose in a shopping centre. The tension is unbearable.

This is what no-one in authority, or anyone who has never had to put their lives literally in non elected bureaucrats’ hands comprehends. Not only do we live with cancer and the very real threat of loss on a daily basis but we have also to cope with inequitable, unjust and infuriating systems that measure our lives in terms of algorithms and acronyms. QALY = quality adjusted life years – will this expensive drug give us value for money? Will the patient (an anonymous, faceless entity) live for more than a few months with the drug than without it and is a few months worth the investment. In many cases “no”. The patient regardless of age, current health and well being is not valued as an individual, a human being, but in terms of cost effectiveness. He/She will die anyway so why prolong the agony? Why give him the hope of a “cure” or the opportunity to have some normality, to take a holiday, to say goodbye, to make his/her peace with the world?

“We have to make difficult decisions” the bureaucrats state, I doubt “public health consultants” or “chief executives” ever lose sleep over the fact they have sentenced a human being to an early, agonising and untimely death because they have ensured that the money saved will provide several more meetings with buffets and drinks for their managers to compensate them for the “difficult decisions” they have to make.

Ian is watching inane TV, unsure how to cope with my impotent rage at the injustice of the situation we blamelessly find ourselves in. So I rage quietly in writing and pour another glass of wine. If I have a heart attack it won’t be the extraordinary “stress” these bureaucrats have caused us – it will be my lifestyle choices that are to blame. People say life is just a ride but sometimes I really just want to get off……

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Posted under Cancer Drugs, Rose Woodward, Social Medicine, Uncategorized

I’m in a quandary. I’ve been raising money now for the James Whale Fund for Kidney Cancer over the past 3 years and I hope I’ve been reasonably successful at it, or at the very least played my part .  The Arch to Arc Cycle Ride is clearly the one thing that I can point at and call an achievement, yes it would have been nice to have had a few more riders this year however it’s the first time it’s been done and it’s been kept deliberately small this year whilst we find our feet and discover the SNAFUs with a smaller more manageable group.

The great news is for this year, we’ve hit out £20,000 target, which I think for a dozen or so people is an absolutely amazing achievement, so yet again, thanks to everyone on the team, you’ve all been brilliant! and I’m so looking forward to just getting on and doing it in a few weeks time.

It has to be said that no matter how much advice you glean from others that have run these types of events it’s still a learning experience when you do it.  It’s a bit like riding a bike really, you can be told exactly what to do and how to do it, but it still takes a while to find your balance once you get on.  I know there maybe some folks that felt it might have been best if we’d gone with a larger group.  Well, we did take that into consideration but the Fund really wanted to do this for themselves, and I can see why.  If you go with a larger group of charities you’re diluting the message you want to get across.  It does mean the growth and learning curve is going to be steep, but the net result, we hope, is that we have an event that is wholly specific to Kidney Cancer…. “from little acorns” as they say.

So what’s my quandary?  Well, it’s that steep growth curve I want to achieve.  There are two things that concern me.  One is personal:

• How do I raise £2000/£3000  year on year? How do I go back to my friends and colleagues each year asking again and again? It’s a big ask.  Everyone has been very generous and I get a sense that people get “Giving Fatigue” … I know I do.

So what do I do?  Do I get a new set of friends? …. well that’s not terribly logical and I’m quite happy with the ones I’ve got.  However, if I can’t keep on asking for their money maybe I need to engage people in a different way and ask them to push the event harder on their own Social Networks i.e. Friends of Friends. That’s one way I guess, but I sense the message will get more and more diluted the further the degrees of separation.

I think the real answers for me are four fold

1. I need to engage local business more than I’ve done so far and get out there and pound the streets a bit.  It’s the annual donations that will really make a difference.
2. Look at doing little mini-events like Curry nights or maybe even mini-cycle events.  We could look at creating a James Whale Fund for Kidney Cancer Sportif around the Watford area (or Cambridge where the charity’s based)
3. Try and engage the Social networking wizzards like JP to see if they have ideas on how you can mobilise an army of twitter & facebook friends/followers
4. Make sure that we publicise what the charity will be using this money for and how it can help patients and their families.  I’ve often been asked that question this year, especially from those people who work in a health related profession.  I can’t tell you how important that is, there are quite a few people out there that are reticent to give because they’re not sure if the money will be used wisely.

My seconnd quandry is less personal but still relevant to the first one:

• How do we attract up to 200 people onto this event, year on year?  What’s the hook?  What will make people choose the James Whale Fund for Kidney Cancer instead of something else?

I really don’t have any real answers to this, but plenty of ideas

• Clearly, we’re going to have to make it good … year on year.
• Get each of the major cycle shops (like Evans and Cyclesurgery) to put adverts up on their web-sites and in their shops
• Advertise in the cycle trade journals
• Write articles for one of the trade journals on this years event

However what I really want to do is to tap into the family and friends of Kidney Cancer patients.  I think this is where we could make this event a really special thing.  I love the fact that as a Kidney Cancer survivor myself I can give back by taking on this type of challenge, and there has to be more folks like me that feel the same way.  I have my health, which is the one thing I can give.  If you’re in the US or anywhere else in the world this could be a great way of tying it into a European holiday.

So to all you fellow survivors or patients, pass this message onto you nearest and dearest, and to your friends.  See if they want to come along to next year’s event.  Lets see if we can grow this event into something really special.

If anyone has good ideas or ways to push this then please let me know, I could use all the help I can get!

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

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Posted under Arch To Arc 2010, Arch To Arc 2011, General

Well we’re less than a month away now and everyone’s been training and working hard to make this a sucess. It  looks as though we’re going to exceed our £20,000 target by a decent amount so we’ve ticked all the boxes.

Now we need your help, clearly if you haven’t donated then please click on the links at the bottom of this blog and give all you can, however it would be great to see as many of you as possible at the start line at 7:30 am Thursday 24th June. It’s an early start but if you could make it there to wish us well we’d love to see you.

For those of you who want to plan a weekend away in Paris at that time then we’ll be at The Arc de Triomphe on Sunday 27th June at around 1pm – 2pm, after an event such as this it’s always nice to see people at the start and finish to wish you well.

I have a friend who works in Paris who says he may join us on his bike for some of the last leg of the journey.

So come on down to London or come on over to Paris and help us raise awareness for Kidney Cancer… we’d love to see you!

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

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Posted under Arch To Arc 2010