My letter to N.I.C.E. with regard to the Afinitor decision.

Let’s see if this has any impact.  I’ve cc’d my local MP and prospective MP and Sir Andrew Dillon as it usually forces them to reply and aknolwledge

Dear Professor Littlejohns,
I am writing to you directly as a Kidney Cancer patient in regard to your decision to deny Afinitor as a second line treatment.
Why if N.I.C.E. openly admit that this drug shows clear clinical benefit do you not seek to approve it?
As you are well aware there are very few treatments available to Kidney Cancer patients in the UK and as such when one comes along it seems only fair to approve it.
You seem (as usual) to have based this negative decision purely on cost.  The QALY calculation you use for some reason is not disclosed to the public due to  IPR which appears ludicrous given this is a public service.  I think it would be fair and proper to make your process transparent and available to the public at large as these are the people you work for.
As a supposed independent body I would expect N.I.C.E. to act as such and not just follow the direction of the Department of Health.  I expect N.I.C.E. to work in the interest of the patient NOT in the interest of government policy.
What real representation did you have from patients?  How much weight was attached to patients as you came to your conclusions?
It is also extremely unfair to only give the public (patients) a few weeks to put their case together.
Why are we given such little time?  If you want a response from patients then they need to be engaged at an earlier stage.  It is outrageous that we only have to the 2nd March to put a case together.
These drugs offer precious time to patients and families.  We are not talking weeks we are talking significant numbers of months and years (as you are well aware).  What cost do you attach to this?
I would also like to add that as a rarer cancer we are not looking at a significant number of patients that need these type of drugs so why do you attach so much weight to cost when we are talking 100’s rather than 1000’s of people?  At £100/day this is not a significant cost.
Kidney Cancer is not a large drain on NHS resources in comparison to other cancers,  so why are we treated in an inferior fashion?  Is it because we are small minority that can’t fight back?
All we ask for is a level playing field, this is clearly not the case and I would expect you to be addressing this in the interest of the patient NOT in the interest of the people who pay your salaries.
I was also shocked that Ann Keen chose to announce that she was spending money on a new design of hospital gowns the day you announce that you will not approve Afinitor as a second line treatment, this was heartless and cruel.  Disgraceful that we seem able to waste money and resources on items such as these and yet deny patients vital drugs that can give them a real quality of life.
Clearly there are hundreds of other examples within the NHS where resources are being wasted (not least of which is the NPfIT) but there is little point in documenting them each in detail in this letter as you are well aware of it yourself.
I urge you not to respond by saying that you are not responsible for any spend within the NHS or for government policy, rather I would like to hear how you will engage with the government (DoH) on how we can stop this waste. I’d also like to hear how you will start to engage with patients at a real level.  The NHS is a wonderful resource and it is sad to see it being destroyed by bureaucracy in this way.
Please realise that N.I.C.E. is meant to be an independent body working in the interest of the patient and as such we expect you to behave as such not to just throw cost in our faces each time a new drug is presented that offers valuable time and quality of life to people.
I respectfully ask that you reverse your cruel decision and allow Afinitor as a second line treatment for Kidney Cancer patients.  I also respectfully ask that you review what is clearly a floored approval process.
Yours Sincerely
Andy Thomas
97 Sheepcot Lane
WD25 0DU
cc Sir Andrew Dillon
cc Claire Ward MP
cc Richard Harrington
The more of us who do this, the more we can keep it in the public eye. The meeting at the House of Lords last week went very well and Rose has secured a meeting with Ann keen to discuss this further.  This is a great step forward!

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

This post was written by AndyThomas on February 27, 2010

There is no evidence of metatistic disease!!!!

Panic over, all was good with the scan results.

However, with my Creatinine level a little raised I am being referred to a Nephrologists.. Creatinine is at 112, eGFR is at 44 and UREA (BUI) is at 8.5.    And the Nephrologist is in Internal Medicine, and turns out the same Dr that I was referred to for my racing heart, and who even though I was on heart medication, and I was still up 20 pounds.. sent me for the original scan that found the tumor. So I have faith in this guy.. my GP said he may suggest medication, or just a change of diet.

I feel huge relief, I cried when he told me the result.. and  he said ‘no this is good’ but it was just the relief.

Posted under Gemma A S.

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

What is the NHS?

I was asked the other day by one of our Kidney Cancer warriors in the US about the NHS and what it really means to us day to day in the UK, and would I mind writing a blog on it.  Boy, what a task … take one of of the most widely talked about and explosive topics in the UK, boil it down to a few paragraphs of explanation and then hope to heck you wont get flamed all over the place.

So here goes!  lets keep it simple.

The basic premise of the NHS is to provide comprehensive free healthcare to all.

You can see from the basic diagram below how the organisation breaks down from a governance perspective

Right at the top we have our government (parliament).  The Health Secretary is the person who has responsibility (via Parliament) for the NHS, and has accountability, and responsibility for setting direction and budget. The Health Secretary is also responsible for the Department of Health.

The Department of Health is responsible for running the NHS.  It sets targets, allocates money and generally oversees the management.

The Strategic Health Authorities (SHAs). There are 10 of these (I believe) around the country and they are responsible for ensuring that government policy is implemented at a local level, and they also operate as regional representatives of the Department of Health.

Beneath the SHAs we have the Primary Care Trusts (PCTs), and this is where it starts to get a little complicated (for me anyway).  They are one of the biggest parts of the NHS and spend around 80% of the entire budget  There are 150+ PCTs in the UK and they have responsibility for “buying” the care for the local population.  Sounds odd doesn’t it? Basically it means that if you need treatment e.g. an operation the PCT buys that service from the local NHS hospital. Effectively the PCTs have control over how the money is spent, what treatments are available and what is not. So when we hear about NHS Managers, it’s generally the PCT managers they’re talking about.

Next we have the Hospital Trusts which is where the majority of healthcare workers can be found e.g Consultants, Drs, Nurses etc.  All hospitals are managed by a Hospital trust, there are even different types of trust e.g. a Foundation trust, Ambulance Trust, but it’s not important for this basic description. The trusts are responsible for negotiating with the PCTs what services they can provide based on the budget.

So where do N.I.C.E. fit into this?  Well N.I.C.E. is the independent body that decides which drugs and procedures the NHS should provide.  They offer guidance on these treatments and drugs for the PCTs.  If a patient needs treatment outside of this guidance then that patient will likely have to go through an appeal process with the their local PCT (which is why we hear in the media about the PostCode lottery).  For Kidney Cancer patients in the UK this is where our campaign focus has been, to ensure that new drugs are given positive guidance. At a very simple level if N.I.C.E offer positive guidance on a treatment or drug then the PCTs are obliged to provide it, if not the patient is dependant on the individual PCTs ability to fund the treatment.

So that’s a really really basic description.  I’m sure I may have some of the detail wrong but it should give readers a fair idea about what’s going on.  I wont go into my personal views in this post … I’ll do that next so as to separate the two things.

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

This post was written by AndyThomas on February 22, 2010

Nerves are shot, waiting on my result!

I had been getting nervous knowing my followup scan was looming, and went for the CT Scan of Chest and Abdomen yesterday morning, so now a case of waiting.  I am hoping my own Dr will have them on Monday, as I don’t see the Urologist until March 5th. 

When I got there I noticed that the requisition had ‘with Contrast’, and I said I don’t think so.. so they telephoned and checked and sure enough – no contrast.  I realise that if I wasn’t keeping an eye on things, they would have gone ahead and given me the die.  On the requistion I also noticed Creatinine 112, up from 95, and I was not expecting that.  I realise that I have not been drinking hardly any water.. just tea, which I am sure will be why it is back up a little. 

Of course the fact that it is up, is not helping with the nerves, as you wonder if there is something else going on.

I feel very selfish posting yet again about little old me and my problems, whereas the other posts are about N.I.C.E. and all the issues with them, but at scan time, this is seemingly all I can think about.

Writing this is kind of therapeutic for me, writing down the fact that I am anxious about the result, will hopefully take away a little of the stress.

I did recently go for a reading with a Numerologist who is also a psychic, and she said that I am healing, she even said that my aura colors are healing, this is without her knowing about my history. So I am holding on to that, and hoping she was right.

Will update again next week, once I have my result.

Guess what I am doing right now, Drinking water like it is going out of fashion, at least the Creatinine result has been a wake up call for me.

Posted under Gemma A S., N.I.C.E.

This post was written by Gemma A.S. on February 19, 2010

It’s Patients who matter !!

You can’t keep a good patient down !!!!
Sorry folks to go off the kidney cancer agenda  but I have to tell you this news – which is also about a Group of Cancer patients trying to get their voice heard  in the NHS…..
Statement from  Cornwall & the Isles of Scilly Cancer Patient and Carer Group – Chair Rose Woodward 


Andy Burnham agrees to an independent  Review into  specialist cancer services centralisation .




The Independent Reconfiguration Panel late yesterday agreed to the request from Cornwall’s  cancer patients   to carry out a full review  into the way the decisions to transfer specialist cancer surgery from Cornwall to Devon have been taken.  Cancer patients , their families and supporters are delighted that, at last, someone has listened to the views of those who really matter – the patients.


Rose Woodward,  Chair of the Cornwall and Isles of Scilly Cancer Patient and Carer Group who has led the campaign for patients and public to be consulted when decisions are taken about their cancer treatment said ” This decision by Mr Andy Burnham, Secretary of State for Health totally vindicates  what cancer patients have been saying for the past two years,  all we have ever asked for is to be treated fairly. Why  has taken Ministerial intervention and two years  of distress and worry  for this to be recognised by the local NHS ? Rose  said “I hope when this inquiry publishes it’s findings, everybody will be open and honest with the inquiry panel and we  will finally get some straight answers about why this was allowed to happen.  Patients in Cornwall are passionate about the NHS, we have to be because we are the ones who  bear the brunt when it goes wrong. Of course we want the best treatment possible but we want it here in Cornwall; what works in London & other cities does not work in Cornwall.”


In January  the local NHS went ahead and transferred more cancer surgery services to Derriford in advance of the Secretary  of States decision. Patients are now forced to travel to Plymouth but they  still haven’t got the extra support they were promised. Cancer Patient Groups in Cornwall are asking for  patients  to have the choice  of care  in Cornwall if that is what they want. A spokesman for the Keep Cancer Care in Cornwall Campaign said ” The local NHS should now  have the good grace while the independent review is being carried out, to allow cancer patients who want to stay in Cornwall, close to their loved ones, to choose Treliske Hospital for their surgery . At the moment cancer patients can choose anywhere in the entire Country for surgery  except our local Hospital - it’s a total nonsense” 



In their recommendations, the Independent Reconfiguration Panel members agreed with all the issues cancer patients have been raising. The panel also accepted people in Cornwall were worried about the implications of this change on the future of other local nhs services, including other rare cancers. 



Cancer Patients and families thank their County Councillors who were not prepared to accept the empty words of the local NHS at the County Council meeting on the 10th December 2009 and voted to ask the Secretary of State to intervene.  We  hope  local NHS organisations will now understand the depth of feeling that exists  about centralising services out of Cornwall  and use the chance offered by this  high level independent review, to work in partnership with  patients and rebuild the trust which has been so badly damaged over the past two years. The Cancer Patient Group  would like to especially thank the 32,000 people  in Cornwall who signed the Cancer Patient Petition asking for a  proper consultation, it is their support that has kept us going. 

Posted under Uncategorized

This post was written by Rose Woodward on February 16, 2010

Today’s BBC lead health story not about Afinitor/Kidney Cancer,but “Does my bum look big in this?”……

Well I suppose it would be arrogant of me to presume that the leading headline on the health section of the BBC’s website would be about N.I.C.E.s disgraceful denial of Afinitor as a second line treatment for Kidney Cancer patients, however I was rather hoping that it would at least feature somewhere on the BBC Health news, but no.

The great thing though is that they’ve given us a smashing example of how we waste our money in the NHS on trivia that nobody cares about and yet deny valuable life extending drugs that do matter.   Not much logic going on from what I can see. 

So what’s the waste I was talking about?  Well apparently we all care deeply about “backless hospital gowns” and how our dignity is compromised by these odious garments. I have to admit that was the first thing on my mind as I was carted off to theatre for my Kidney Removal (nephrectomy), it certainly wasn’t the fear of maybe not coming out of it, or the fear of a cancer diagnosis, oh no, the fist thing I thought was …“Does my bum look big in this?” (and for those of you wondering, yes it did look big …… very big!)

The Offending Article

Sorry to make a joke of this but come on the BBC what were you thinking? yes it’s an interesting(‘ish) article, but not one mention of  N.I.C.E.s decision today on Afinitor anywhere on either the UK section or the health section of the website?  In an ideal world we’d have an NHS system with enough cash floating around to chuck away on “nice to haves”, but somehow I don’t think we’re there yet.

Maybe I’m doing old “Auntie” an injustice and there is mention of the decision on their website, in which case I apologise unreservedly, and anyway thanks for pointing out that Ann Keen (Health Minister) sees this as a burning issue.  That £25,000 you gave to the design council for the gowns could have funded 5 cycles of Afinitor for a patient……. Nice one Ann!!

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

This post was written by AndyThomas on February 9, 2010

What’s the point of N.I.C.E? …..

Here’s the mission statement (or purpose) of N.I.C.E. according to the front page of their web-site

NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health

So you’d think with this kind of remit they’d be working in our favour, and when I say “our favour” I mean the population of the UK and specifically its patients.

Yet when it boils down to it what they really do is to create negative guidance that allows others to wash their hands of the situation, such as the government who can just say “well this is down to N.I.C.E.”.   It also enables PCTs to deny patients treatment despite what the specialists say.

I’ve been to meetings, received mails, read articles where time and time again specialist oncologists are screaming for drugs that they know will help and yet they are denied.  It’s an appalling state of affairs and I would hate to have to be the one that has to give a message to a patient that says “yes, there is a drug that could help, but I’m afraid you can’t have it because it costs too much”.  It’s inhumane.

You can tell this is N.I.C.E.’s stance because of the clear statement again made on their front page

Disinvestment. Decommissioning. Saving money. Whatever you call it, the NHS faces an unprecedented financial challenge.

Use NICE guidance to help you to cut costs and maintain and even improve services.

Ok, so it would be churlish of me to not admit that the sentiment is that they are there to help, but it’s how they go about it that gets me.  This statement is all about costs, where does it really address the need of the patient?

I can plainly see that an independent body such as N.I.C.E. that looks at new drugs and treatments and offers guidance on their usage is no bad thing.  However the guidance is just that… guidance, but the PCTs use this as ”carte blanche” to deny patients, on what basis? Certainly not on clinical grounds.  No, it’s just cost.

I’ll use the example of Affinitor which has just been cruelly denied as a second line treatment for Kidney Cancer patients.  So, here we have a drug that has been clinically proven to work, every specialist (that I know of) in the country is backing this up.  A drug that’s been approved for usage in other European countries and in the US and yet for some reason (cost) we can’t have it in the UK.

What I would love to see N.I.C.E. do is to fight Whitehall on our behalf, not to just sit there and do the bean counting for government.  This organisation seems able to pronounce death sentences on patients by denying them drugs that extend their lives, and yet it seems unable to fight the waste in the NHS and other areas of government.  They are closer to Whitehall than any of us, surely they can see that waste AND actually fight to do something about it?  Why on earth, if they are truly independant would they seek just do the govenerment’s bidding?

Why leave it to patients and the charities to fight? I find it so had to believe that they are impervious to the waste, they probably see it more than we do.  Help do something about it!

So come on N.I.C.E. do what you’re supposed to do, do what you were setup to do, stop being a bunch of bean counters, stop measuring everything against some Qualy calculation.  Stand behind the patients and population you proclaim to be helping.  

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

This post was written by AndyThomas on February 9, 2010

Kidney Cancer – is it the wrong type of cancer !!!

Today we hear that once again  N I C E have refused to provide NHS  kidney cancer patients with  licensed  cancer drugs for kidney cancer. Sometimes I despair of this NHS. In the same week that Gordon Brown announces that each cancer patient will receive a one to one care plan and home visits from nurses, the same cancer patients are told they will be refused treatment that is readily available throughout the rest of world. And not just  Countries like the USA where insurance companies hold sway over who gets what, but countries like France and Germany  and Sweden who operate social welfare systems. What is the UK doing wrong; why can’t we look after our own desperately ill cancer patients in the same they do in the parts of the EU. Will we ever  achieve their high standards of care while UK patients are refused treatment with clinically  effective and proven cancer drugs.

Perhaps someone from N I C E  can explain their actions to the kindly people throughout England who run relays in aid of cancer research, who hold coffee mornings, who clean cars on Saturdays etc  and do so because they want  cancer patients in their communities to receive the best care possible and not condemned to die prematurely because the NHS  can’t manage it’s  own money despite the huge salaries they pay their administrators.

Afinitor,  the drug are refusing to pay for  to help kidney cancer patients,  will cost  less than £100 per day – last week a Director of Commissioning  ( thats costing and buying services to you and me) for a PCT  in London was offered a salary of  £800 per day !!!!!!! . 

Kidney Cancer patients are ill & many are desperately distressed by what they & their families are going through, but we are not stupid. We know that NHS funds are not infinite, but when  for instance,  someone ( who exactly? )  at the Department of Health can sign cheques for £40,000,000 ( forty million pounds) for legal contract advice about the NHS IT programme that doesn’t exist, how do we rationalise that to cancer patients who are told they are too expensive to treat ? Why do we tell patients  their treatment is not a cost effective use of NHS resources when we have Health Authorities sitting on unspent surpluses in their annual accounts. Are cancer drugs are too expensive at £100 per day when we pay Directors of commissioning in PCT’s  £800 per day ? Will we soon reach a time when  the NHS will stop treating ” expensive”  serious road traffic victims, will we stop offering “expensive” dialysis at £35000 pa ,who will say if  heart or lung transplants and after care  are  too expensive? 

I have a dear friend who has terminal cancer who said to me – “being told you have terminal  cancer is not the worse thing in the world, far worse is being told there is a  treatment that will help you but you can’t have it”. That is the reality kidney cancer patients are living and dying with. Do you want your Mum or Dad or son or daughter to spend the last few months of their life with these words ringing in their head. “You are not worth keeping alive”   It is an unforgivable way to treat anyone let alone cancer patients  and their families !!

Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, General, N.I.C.E., User Posts

This post was written by Rose Woodward on February 9, 2010

N.I.C.E. fails to deliver for Kidney Cancer Patients again

Yet again N.I.C.E. are refusing to approve a second line drug Everolimus (Afinitor) for treatment of Renal Cell Carcinoma (Kidney Cancer) patients.

On what basis?  Yes, you guessed it, pure cost.  It’s simply dreadful that we’re in this position again having just been through this with Sutent.  When patients life’s are at stake we are dictated to by a committee driven not by compassion but by pounds and pence, it just isn’t right.

Based on what? The drug has only recently come onto the market and to that extent there hasn’t been a long enough period of time to jump to conclusions.

This kind of stupidity stifles the oncologists who are left with their hands tied and no treatment options.  The ability to mix treatments is taken away from them.  It’s a hard enough disease to contend without these barriers.

The toughest part of this is that we’re not dealing with thousands and thousands of patients, but just a small minority of people that could gain enormously.   Whilst extra time appears to be irrelevant to N.I.C.E. it’s huge to the individual and their families.

Where is the compassion? I wouldn’t wish this disease on anybody but there are times I wonder if things would change if just one of these people at N.I.C.E. were directly effected , their minds would soon change.

As a rejoinder don’t think for one second that you’re protected by private health, these drugs are only made available for the first year and then it stops and you’re back in the NHS system.

An additional frustration is that some of these drugs are developed in the UK and yet are made available in other countries and we are left behind.  Why is that?  Are we so poor?

As usual we’ve been left with but a few weeks to appeal against the decision an as usual they’ve kept that part quite.

Come on N.I.C.E. get your act together and start making decisions based on compassion and not cost.  If N.I.C.E. ‘s only purpose is to decide on a QALY factor then I fail to see why they are there in the first place.  Anybody can do maths.  We want more than that, we want an independent committee that makes its decisions based on clinical evidence and human factors.  If N.I.C.E. is not making these decisions weighted on the side of the patient then I fail to see its value other than a way of the government being able to pass the buck.

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Posted under Afinitor(aka Everolimus/RAD001), N.I.C.E.

This post was written by AndyThomas on February 9, 2010

Kidney Cancer Arch to Arc cycle ride reaches over 50% of target!!

Well, I got into a little bother yesterday for publishing yesterday’s blog so I’ll stick to a topic I know I’m safe with :) (it will be re-published later)

The great news is the Arch to Arc cycle ride has reached well over 50% of the £20,000 target and we’ve still got a lot of time left.  Keep up the good work everyone! This is really going to make a difference.

Cycle Weekly have kindly donated a number of copies of one their latest editions which contains a pretty good training plan to get people from 0 miles to 100 miles in a day.  We’ll be sending these out shortly to each of the riders along with a registration form that we want everyone to complete.

On the sporty front I’m getting more than a little nervous about the Cross Country Ski marathon in a few weeks time, I don’t feel anywhere near enough ready for it.  I just wish we could have some more time in the snow before we go.  Other people are doing seeding marathons before the event and our Austria marathon seems a long time ago now.  I keep on telling myself that it’s not a race and if I dont complete it this year it doesn’t matter and there’s always next year.

However, at least I feel my cycling’s getting better.  I even dug out my birthday card from my sister this morning to give me some motivation.

The Birthday Card

It was great to receive this, much as I hate the Moon Pig adverts the output is great.

I’m pretty much ready to do the exploratory ride to Paris and it’s just a case of picking the right few days now. Hopefully next week, but we’ll see, it’s very dependant on a few commitments I have and the weather.

So there we are, a short update.  Just a few more riders to confirm and sign up now and then we’re off!

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Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on February 4, 2010