Kidney Cancer Bloggers Have your Say

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

WATFORD

WD25 0DU

cc Sir Andrew Dillon

cc Claire Ward MP

cc Richard Harrington

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

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.

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

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.

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

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.

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.

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 !!

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

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.

I need to make some changes to this post, it will be back again soon!

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

I was asked for a comment about the NHS Constition today – had to give it some real thought  because I think the NHS Constitution is a great first step to recognising the real sense of ownership alot of patients feel towards the NHS. We feel passionately about our local Hospitals and the Clinicians & Nurses who look after us. But sometimes patients can feel lost because the NHS is such a huge machine with a life of it’s own, so many different organisations each with their own policies, guidelines and initiatives and it’s easy to feel individual patients to feel they don’t matter anymore.

As a survivor of Kidney Cancer, I have so much to thank the NHS for and I do so on a daily basis . Kidney cancer is a type of cancer which is difficult to treat and I’ve received all my treatment from the NHS which cared me during my illness. But I know other cancer patients who have been let down because “the system” is seen to be more important than the patient. The Constitution needs to be matched by actions at the coal face in GP surgeries, Hospitals and PCT’s and organisations like N I C E.

Patients need to know their views are valued – no more box ticking .

Ever  The Optimist  Eh ??  Rose Woodward  www.kidneycancersupportnetwork.co.uk

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Posted under Cancer Drugs, General, N.I.C.E., Rose Woodward

Last year the previous Health Secretary, Alan Johnson, promised us greater flexibility from NICE for end of life drugs and yet we have still only been left with one drug, Sutent (Sunitinib).  Our three remaining drugs have since been rejected.  Because of this we cannot be treated sequentially, as in many other countries.  NICE now appears to be on a roll, as they have also rejected Nexavar (Sorafenib), the only option for liver cancer patients.  Also, Avastin (Bevacizumab) has been rejected for bowel cancer patients.  These drugs are available in most other EU countries and our NHS is forecasting yet another massive surplus, this time of £1.476 BILLION!

NICE uses a QALY figure to determine cost which must be no more than  £30,000 pa, a figure that was set in 1999, which they refuse to increase for inflation.  NICE introduced a new end of life QALY at the beginning of this year, which was meant to make it easier for patients to access these treatments.  But this QALY is governed by strict criteria where drugs already licensed for other indications are among those barred from being considered under the system.  This is grossly unfair to patients.

If NICE continues with this tough approach then drug companies will no doubt consider withdrawing some of their new cancer treatments from the NHS assessement process.  Cancer patients in Britain will consequently be denied more effective drugs that are available in other countries.

The sad thing about all this is that kidney cancer patients who cannot tolerate Sutent are already again having to plead with their local PCT for access to a drug such as Afinitor (Everolimus) which has yet to be assessed by NICE.  This drug is considered to be one of the most effective second line treatments after Sutent.

A recent report by the Organisation for Economic Cooperation and Development, shows that Britain still has a lot to do to increase cancer survival rates, which are among the worst in the developed world.  This is despite an above average healthcare spend and investment in nurses and doctors.

I am finding it ever more difficult to ascertain just why our cancer care in this country is in such a sorry state when so much of our money has been invested in healthcare.    It seems to me that we have no option but just to keep on campaigning for the best treatment for cancer patients and to ask what they have been doing with all our taxpayers’ money  – we owe it to the next generation!

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Posted under Clive Stone, N.I.C.E.