Here we go Again – the Postcode Lottery

If you are in the nightmare situation of having to fight to get treatment for Kidney cancer – please don’t think you have to do this on your own – we can help you and we will . We have many friends who are themselves patients and carers and family members who can talk with you and hold your hand to help you get through the appalling situation you find yourself in.

If your Oncologist wishes to prescribe treatment for your Kidney Cancer and yet your Local Health Authority ( England – Primary Care Trust -PCT or Wales and Scotland a Local Health Board – LHB ) refuses to provide funding then please email Rose and Julia at contact@kidneycancersupportnetwork.co.uk; we can provide expert advice, individual letters and contacts to lead you through the process and help you understand the policies and how you can challenge the system to make sure you have the best chance possible to get access to the best available treatments.

Julia and Rose have been helping cancer patients in 100′s of PCT’s to get access to proven and effective kidney cancer treatments for nearly 4 long years, sadly here we are 4 years down the line and the NHS are still refusing to provide active cancer treatment to desperately ill kidney cancer patients – we are fighting exactly the same battles now as 4 years ago.

In this day and age it is scandalous that patients not only have to fight their diagnosis of cancer, but they have to use vital time and energy battling with the very organisations that are meant to care for us. We are passionate believers in the NHS and universal care but how can we stand by and let administrators and managers decide who to treat and who not to treat. The decision whether and how to treat patients MUST be made by Oncoligists/Clinicians in Hospitals and not adminstrators sitting behind desks in PCT Offices. We cannot turn our back on our fellow cancer patients and watch them and their families suffer because “the system” will not allow new and innovative, clinically effective treatments to be prescribed to NHS patients.

We are not running a  business, we don’t even have a bank account and we certainly  don’t take money from the Pharmacuetical companies who make the drugs patients need. We are able to do it because we are helped by the James Whale Fund for Kidney Cancer Charity. All over the UK  patients and families donate money, leave legacies and run marathons, hold coffee mornings, curry parties , cycle on fundraisers   to make sure this vital  help is always there for the next person who needs it.  But Julia and I  also do it because we have to;  because  as cancer patients ourselves, we understand  what facing an uncertain future means  and the last thing on your mind should be whether your Doctor will be “allowed ” to prescribe you the treatment  you need in order to keep you alive.

NHS Constitution…….1st paragraph…….The NHS belongs to the people.
It is there to improve our health and well-being, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

Posted under Arch To Arc 2010, Britain's Biggest Curry Party, Campaigns, Cancer Drugs, Fund Raising, N.I.C.E., Rose Woodward, Uncategorized

This post was written by Rose Woodward on April 30, 2010

My Mom’s Story

On August 6, 2007, Colleen Sigman passed away from renal cell carcinoma. Colleen Sigman is not just another statistic for kidney cancer she was a mom, a grandma (maw maw), a niece, an Aunt, a sister-in-law, and a cousin and most of all she was my best friend and my life along with many others will never be the same without her.

My mom loved life and she lived it to the fullest. When we found out how far advanced her cancer was she never once said “Why Me?!” The only thing she said was that she was glad she got to raise her children. She spent the next month of her life making sure that her children and grandchildren would be okay after she was gone. 

I found the Kidney Cancer Konnection on facebook and I’m so glad I looked more into the site. I have found already meet 2 wonderful women who have lost loved ones to this horrible disease. I finally found people that get it!

I hope to be able to blog about my life and the struggles with losing my mom to kidney cancer and maybe along the way I can help someone that is having the same struggles.

Posted under Christy

This post was written by Christy on April 30, 2010

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

Very Sad News…………

It was such sad news to hear today that Tony Clark, co-founder and Chair of Kidney Cancer Canada passed away.

I had the privilege to meet Tony last year when he and Deb Maskens spoke at the James Whale Fund patient day in London.  Their talk had a profound impact.  To see how much has been achieved by Kidney Cancer of Canada in so little time was truly awesome.

Tony, for me you had the capacity to inspire me and others. The legacy you have left will surely grow based on the foundations you’ve helped create.  You will be sorely missed.  Rest in Peace.

Posted under Andy Thomas, General

This post was written by AndyThomas on April 17, 2010

What’s been going on then?

It’s been an interesting few weeks for me since I came back from my trip from France. I dont seem to have had the chance to stand still and it looks like my days of unemployment are coming to an end (shame). I start a new job on monday as a part-time consultant/contractor. Now part-time to me means 3 days a week, but I suspect they may want a little more out of me initially, but I’m so lucky to have found a part-time position that I’m more than willing to take the rough with the smooth.

On the Arch to Arc front we’ve got another addition to the riders bringing our total up to 15 which I think is fantastic for the first year, and even better we’ve reached over 80% of our target of £20,000 which I think is absolutely amazing at this stage, so yet again a big thanks to all the riders who’ve been plugging away.  Looking at all the facebook pages and blogs training has started in earnest for most of us …. only 2 months now!! Having done it once I’m really excited about doing it again in a group, it’ll be great fun.

I’m going for a cycle with Trevor Coultart (one of the riders) this evening which should be a giggle, he’s set the course so I’m in his hands.  I seem to be raising my average speed gradually but I have to admit I’ve been playing more music and generally fiddling around at home …. I really should have being out there on the bike.

On the Kidney Cancer front it’s also been exciting times, with the election looming Cancer is getting a good press as the parties jockey for position, if you want to see some of the news and how hard the likes of Clive Stone and Rose Woodward have been working then check out this link and you can read through a selection of press items.  I received a typically patronising letter back from my current MP when I asked for help on the Afinitor issue (so I know where my votes NOT going).

It’s also worth noting that the Kidney Cancer Association (one of the Kidney Cancer groups based in the USA) are coming over this year to hold a Patient Day and the James Whale Fund welcomes them to the UK.  I would suggest you make a note in your diary if you want to attend. It will be interesting to see a different perspective and how they are dealing with this in the US.

Some exciting news is that they’ve unearthed a Kidney Cancer Urine test that potentially identifies certain proteins that can indicate the presence of Kidney Cancer, this will be a big leap forward and should mean early diagnosis is quick and simple cutting down on the number of deaths each year.  Kidney Cancer is known as a silent killer in that symptoms dont often display themselves until the later stages of the disease, and it can often be too late, if caught early enough surgery is usually all you need and this Urine test will go a long way to helping …. so bring it on!!

It’s going to be a busy summer in the world of Kidney Cancer in the UK so watch this space and the news feed on the James Whale Fund web-site to find out what’s going on.

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

Posted under Andy Thomas, Arch To Arc 2010, General

This post was written by AndyThomas on April 15, 2010

Simply Red

Simply Red are going on tour for the very last time, I have got four tickets to see them at the O2. This will be on the last date of the final tour.

I was pleased to be able to get the ticket. They are a part of my past.

The last time I saw them was in May 2003 at Wembley Arena. The Home tour.

I stood in the queue with my wife, watching the world go past. I turned around and thought “where are all these old people going”.

And then the realisation, they were joining the end of the line. I was part of it.

We were all that bit older than when Simply Red were last on the road. In fact Mick mentioned the age thing and how the press had given him a hard time for not being a slim and young and beautiful creature. We didn’t care; we had grown up together and his voice…

So that was Simply Red and it was simply very good.

The next day I got up for work. Normal routine.

I went for a pee and that was when my life changed.

Simply Red…that was the colour of my pee.

I had, at one point in my life, worked in a hospital (or two) and with my great depth of experience I knew that having the toilet look like I had tipped a bottle of Chianti down it was not right.

I said nothing and did nothing. Off to work and later on I went to the toilet.

Nothing.

The clearest freshest pee you ever did see, it could have been Evian.

So, I rationalised and googled and thought well, although I had not run a marathon exercise and exertion could be the answer, I had been pretty well down with it at Wembley and I did shuffle my feet a bit and stand up almost the whole time.

No that was not really likely to be the cause.

A stone, I had renal colic once, it must be a stone that is a common cause. Oh, but no pain. A little one then, chips, that will be it.

Of course it happened again and the pattern repeated. Blood, clear, blood, clear.

I went to Coop and got a tea strainer. Yes really. I started to pee through it to see if there was a clue or two. Looking for that chip, awaiting the stone I knew was not really there. Caught a clot or two, they were tiny but I caught them.

I don’t really remember how long that went on for, not long. I drank a lake full of water to “flush out my system”. That failed as well.

I went to the doctor and explained it all, he was not too concerned and whilst some fast track was available if a nasty thing was suspected I was just routine as far as he was concerned so I awaited an appointment at the man clinic.

The day arrived and I trotted off by myself. First a chat with a doctor and then much to my surprise a cystoscopy (a look into my bladder). Now I was surprised because when I was a hospital worker this was a day case with a rigid metal tube thing and a general anaesthetic.

Oh no, not know.

A bit of local gel up the ever shrinking old chap and a flexible telescope affair. You get to see your insides on telly, so that’s OK then!

Nothing. They found nothing wrong. Back to the ancient magazines and a go with the ultra sound lady. Now these lovely and experienced professionals are not allowed to interpret or comment on what they see but the clues were there. A quick scan both kidneys and then, “can you roll onto your right side”,” just having a problem seeing the left properly”, “OK, just a little longer”.

And the capture of a still image or two.

The clues were there.

The clues are always there.

Then the wait to see the doctor again. Called into a room, too many people in here. Sit down please.

“You have a tumour on your left kidney”. “You will need an urgent CT scan”. “You will have to have the kidney removed”.

“I’ve got what? I’ve got cancer”.

“Yes” he said.

“But I’m only 42″

“This won’t kill” said a kind faced nurse.

“How do you know” I replied.

“Is there anyone with you” someone asks.

“NO”

“Would you like to sit here a while” The kind faced nurse asks.

“Will it make a difference?” There was no reply.

I sat a bit, trying to take it all in. It was burnt on my brain at that moment never to be erased. Not capable of erasure.

I drove home; I had been out of the house a few hours. In those days, with young kids around my wife had a great job which she could do from home so she was there, waiting for me.

“Hello, how did you get on?” she called down the stairs from the home office set up in the spare bedroom.

“Not too good…”

And so it started, it was not just about me and sorting this out, it touches so many people around you. Like telling the kids the holiday is cancelled because I have to have an operation and telling my Mum the news. We lost my Dad to cancer some 8 years before this.

Then there was the NHS who had a very different idea as to what urgent meant to my idea. There is too much to say on that subject, perhaps for another time. Suffice to say I was able to choose to be treated in the private system as a self pay patient. No insurance but we could find the cash.

I became a cancer patient. I went for some tests. I checked out my worth dead, but it was too late to change that. Life insurance is still a problem; thankfully I was in a good pension scheme with death benefits and had insurance already in place.

Surgery came and went; the day of the operation I had not had a single symptom for three weeks. I had never had any pain or discomfort.

I am so please I went to the GP. Had I waited it would have gone away and by the time any sign or symptom returned it could have been a very different story. It would have been very easy not to go, be a bloke about it all, but I think I always knew this was something pretty wrong. I do not exaggerate the colour of my pee.

I got back to work 10 weeks later and entered the system for routine checks, a cycle of fear and despair followed by relief.

And then after 5 years they don’t want to see you any more. Now that is full of mixed feelings. Nice to be free of the checks but what if…? How will I know?

At my last scan it was pointed out that my remaining kidney was some 30% bigger than it had been before it was all alone. So now I realise I don’t have a beer gut but an enlarged kidney pushing all my insides forward!

I get a weird cramp every so often, where you should not get cramp, just to remind me of it all. But I don’t really need reminding.

I do loads of stuff I may not have done before, a bit of the yes man syndrome. But in so many ways despite it all I have reverted to type, getting annoyed or frustrated about stuff that really does not matter.

So Simply Red at the O2 in December. I am sure it will be a great night out.

I will try not to dance about too much, just in case.

Posted under General, Peppers

This post was written by Peppers on April 7, 2010

Tags:

Press release issued about the Cancer Drugs Fund

Rose Woodward, herself a survivor of kidney cancer and Patient Advocate for the James Whale Fund for Kidney Cancer said “On behalf of the James Whale Fund for kidney Cancer and my fellow kidney cancer patients, we welcome the news today that Conservative Party will set up a Fund to enable patients suffering from rarer cancers to get the cancer drugs they desperately need.

Over the past 4 years, on behalf of terminally cancer patients from all over the Country, we have been pleading in front of jury’s of PCT administrators to allow  patients to have  proven, innovative cancer drugs that  Clinicians want to prescribe. By anyone’s standards it is  cruel and callous to refuse to treat vulnerable patients who  are already having to cope with a diagnosis of a serious cancer.

At the James Whale Fund we are passionate believers in the NHS and universal care. We welcome the day when it is the Doctor who will decide what drugs he will prescribe for his patient not an administrator sitting behind a desk far away from the Hospital.

N I C E (National Institute of Health & Clinical Excellence) denies drugs on the basis of cost, but Oncologists want to prescribe drugs on the basis of clinical effectiveness and the needs of their patients.

Cancer patients need to know the NHS will be there for them when they most need it and at the moment they are being let down.  The NHS must stop saying to cancer patients “You are too expensive for us to keep you alive.”

Rose Woodward.

Patient Advocate for the James Whale Fund for Kidney Cancer & Founder of the Kidney Cancer Support Network

Posted under Afinitor(aka Everolimus/RAD001), Campaigns, N.I.C.E., Rose Woodward, User Posts

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

This may just be the Turning Point to end our struggle for proper treatment

As reported in the Telegraph: “David Cameron today pledged that any patient with cancer should be allowed any drug licensed in the last five years, if their doctor seeks it, even if the National Institute for Health and Clinical Excellence has ruled against its use”. Of course he will be unable to keep this pledge unless he first wins the election with a substantial majority but it still give us all hope for the future.

This is terrific news and will give thousands of patients extra time with their loved ones. Sadly it will come too late for many who have since died having been denied by both NICE and many PCTs under the callous Post Code Lottery thereby preventing clinicians from prescribing the most appropriate drugs.

As expected NICE have today responded by saying yet again that the NHS do not have a bottomless pit despite it still being in surplus some £1.4 BILLION representing an “Underspend” on patients!

Can NICE still be considered “fit for purpose” when they say they are independent (costing taxpayers £70 million pa) and yet have members of an NHS lobby group sitting on their appraisal committees?  Yes that’s right, for those that don’t know a new NHS group called the Commissioning Support Appraisals Service (CSAS), now sits on their appraisals committees at a cost of £300,000 pa from the NHS budget.  Shockingly, CSAS say they want to INFLUENCE NICE decisions in view of all the new cancer drugs in the pipeline waiting to be appraised. CSAS was commissioned by Birmingham East & North PCT whose chief executive is well known for her stance on spending money on cancer drugs. She was reported in her local paper recently for calling our drugs “DEATH DEFERRING” saying money could be better spent elsewhere, for which she apologised after an outcry from patients. I am even more concerned as it appears that she is now to be put in charge of planning End of Life Care for us all!

SO THE CHOICE IS OURS – VOTE LABOUR AND GET MORE OF THE SAME, OR VOTE CONSERVATIVE FOR THEIR PROMISE OF ACCESS TO THE BEST DRUGS FOR US AND FOR FUTURE GENERATIONS!

Posted under Uncategorized

This post was written by Clive Stone on April 3, 2010