PLEASE PLEASE PLEASE HELP YOURSELVES

I have just received information that NICE brought this out in the media , whilst trying to bury it in the news , reference the MMR jab for children and a measles epidemic, this was not coincidence, neither is it coincidence that it appeared in August whilst most people are away on their annual summer holiday, especially those they knew would have strong objections to this news, (you only have until the 29th August to register your objections). They also brought it out to conflict with the opening ceremony of the Olympic Games, just to distract you so to speak.

How refusing Avastin Sutent Sorafenib and Torisel fits in with the Cancer Reform Strategy "World Class Cancer Service For ALL" leaves me dumbfounded.

write to your MP ask him/her about' World Class Cancer Service for All 'and see where they stand on the issue, and if they want to get voted for at the next election.
and email nice and lodge your objections
nice@nice.org.uk

Steffy & Tom

I would certainly like to do everything possible to help - as you say, a pattern is appearing and this really does affect all of us, whether immediately or a few months down the line. From your experiences over the last months, do you have any suggestions for arguments which could be particularly appropriate/compelling when writing either to Nice or to my MP? I am very anxious not to appear as an over emotional elderly female [and thus be ignored]! Part of me believes this may be a futile exercise - but the two of you have proved that it IS possible to take on these behemoths and win! Bless you for setting such a wonderful example. Love, Kate xxx

Barry,

Thanks for raising this matter BUT I SEE THERE IS ALSO ANOTHER SIMILAR THREAD, so maybe they can be brought together.

Please find below my note to NICE copied (OF COURSE) to my MP

From: matt [mailto:matt@wcf.eclipse.co.uk]
Sent: 09 August 2008 00:13
To: 'nice@nice.org.uk'
Cc: 'hopep@parliament.uk'
Subject: RE: Help required PLEASE

AN OPEN EXPRESSION OF CONCERN (Copied to Mr Phil Hope M.P).

The National Institute for Health and Clinical Excellence

Dear Sir or Madam,

YOUR DECISION TO END PEOPLES LIVES!

I am horrified to learn of your decision to instruct PCT’s not to fund not to fund 4 cancer drugs, namely Sutent, Avastin, Sorafenib and Torisel which albeit recognised as being clinically effective in the treatment of advanced Renal Cancers, are in your view not cost effective.

A Doctor who knowingly administers incorrect drugs and or fails to administer drugs necessary to prevent a person from dying can, and have been prosecuted, so why not NICE. In making this decision you are knowingly acting in a manner that will cost people their lives, surely this action must be illegal and leaves the NICE corporate body, and the individual managers and directors thereof liable for prosecution.

The Human Rights Act article two gives every human being THE RIGHT TO LIFE, denial of a known clinically effective drug which gives an individual said right cannot therefore be legal under the convention. Similarly to deny a drug that clinically enhances / improves the quality of life for whatever “period of time” is to interfere with and adversely affect both the individual and their families “Private and Family Life” which would of course be in contravention of Article 8.

In addition the use of the drugs you are refusing to approve for issue, on cost basis alone, are by no means only utilised for the treatment of advanced Renal Failure therefore your action will at a stroke remove the availability of a drug that may “for the individual patient” be far more effective than normal Chemotherapy [ or similar] treatment.

I understand that your directive is to be issued in the New Year and albeit it already appears to have been cast in stone, it is rumoured that there is to be consultation, if so with whom, how and when?

As a person who is battling various terminal cancers, “I actually know and appreciate the value of receiving the most effective and clinically correct drugs”, I am also as a Hospital Governor aware of the need for cost effectiveness – cost savings can be found in numerous other ways without the unwarranted removal of life saving drugs which will directly cause premature death of numerous individuals.

You will be fully aware that other EU member states are authorising a much wider range of “clinically approved” drugs / treatment than that which are being issued by PCT’s in England and Wales, is it not time for NICE to recognise it’s duty to our citizens and fall in line with other member states before everybody wakes up to the fact that they are entitled to receive treatment anywhere in the EU. Failure to start treating the Patient will result in the National Health Service having to meet a much greater financial burden as more and more patients decide to become part of a “Best Treatment Exodus” and go elsewhere in order to receive the most effective treatment.

It is time for NICE to recognise that “LIFE” is far more valuable than a few pounds and strive to achieve the objective that “All clinically approved procedures / drugs / treatment shall be made available to NHS patients, where in the view of the Consultant to do so would materially enhance the patients quality of life” doing this would ensure that NICE would at last be recognised as the National Institute for Health and Clinical Excellence and not as it currently portrayed which is a National Institute of (government) Cost Effectiveness.

I look forward to your reply.

Matthew J Embleton

how very sad that this country had come to this. and how dare this goverment see cancer patients without, one day it will hopefully change before too many people have to die to get these drugs, at the moment it seems like we bang our heads against a brick wall, maybe now is the time to see if the charities that are so well backed can somehow help to fund these drugs, not an ideal world i know, but lets face it, the NHS seems to be on a hiding to hell.
love as ever
Alisonxxxxxxx

Get the Daily Mail on Monday, there will be an article in it about NICE and the fact that when they had a meeting about this refusal they did not let the patient experts have a 'VOICE' at the meeting. NICE constantly does not listen to patients views, well it is about time they did. Let us inundate them with emails and letters, let them know that we are not going to go away, please write to NICE and state what Matt has said, Make them care about you, Make them look at you as a Human Being instead of looking at £ ££££££££ . Daily Telegraph last Sunday thought that NICE should be disbanded and the money used on drugs/treatments. Now there's a thought.
We are now part of the EU and cancer patients in other countries are getting better care than cancer patients in the UK, surely we should not be condemned to die just because we live in the UK, that is not just Postcode Lottery ,it is as Kate Spall states= passport lottery.
France has 10 more cancer drugs available than the UK,
We spend as much on cancer drugs/treatment as Europe and we are bottom of the list in surviving it, now why is that, NICE refusing on grounds of cost?
Email NICE make your voice heard nice@nice.org.uk
Write to your MP, make your voice heard.
Tom & Steffy

I would strongly agree with Tom and Steffy that although this particular initial ruling only applies to kidney cancer patients (though isn't Avestin used for Bowel/liver cancer as well???)(not sure!), Nice are busy establishing what is for them a 'cast iron' principle that ANY cancer drug that is (according to their calculations)similar in cost/efficacy to these four drugs cited, should NOT get funded by the NHS.

So, today Nice is sending kidney cancer patients home to die. Tomorrow they'll be sending other cancer patients home to die......

Cancer therapy has turned a huge corner recently, and it's still on a very steep 'advancing curve' as more an more targetted therapies come on stream out of trial, and we know for sure that the next generation, vaccine based, are also on their way. They will offer increasing life-extension to cancer patients, even the possibility of cures.

The UK really, really needs to establish NOW that ALL cancer patients are worthy of the best medical treatment availalbe and preferred by oncologists.

We are ALL in this together, whatever kind of cancer afflicts our families. And the more of us organise and lobby, the more powerful we are in achieving maximum life for cancer patients.

Julie.

Im doing my best mate. NICE website wont work properly (Just about sums it up) I have also bloged cancer research site on kidney cancer 4 times under the name of Marie Mc Dermott. Please do the same and get everyone else to. We will show these b......s what we can do. Remember
NICE is not very nice GET RID OF NICE.

You will be able to read articles about NICE and these cancer drugs in tomorrows Sunday Telegraph the article will be from Professor Karol Sikora who supports cancer patients very strongly. Professor Sikora supported me in getting funding for my drugs and he continues to support cancer patients at every opportunity. The Daily Mail will have coverage of the refusal and an interview with Kate Spall on Monday.
Matts letter is currently going around the country to all interested parties, if you want to complain and take NICE to task, read Matts letter, and lift bits from it if you want, (Matt does not mind) and send an email to NICE asking them why they have decided to let cancer patients die by withdrawing drugs that may be able to help them.
If you think you can contact your local radio and tv, station, your local newspaper and make a fuss, then do so, you only have your life to lose.
email nice@nice.org.uk
website www.nice.org.uk, if you want to read the whole report and add answers to the report.
Tom

read Professor Karol Sikora's article about NICE decision in todays Sunday Telegraph , you can read it online, supportive and very honest
Tom

Just read the Karol Sikora article on line,

http://www.telegraph.co.uk/opinion/main.jhtml?xml=/opinion/2008/08/10/do...

and I agree, it seems very fair and 'calm' in tone, as well, which I think is excellent in the circumstances. I particularly appreciate his pointing out that the COST to the NHS of having each, individual patient applying to their PCT for exceptional funding is ITSELF a very high bureaucratic cost, and the money it costs to process such applications would be far better spent on buying the damn drugs in the first place!!!!!!

However, unless I've missed it, there doesn't seem to be any follow up to the Nice draft proposal in the Sunday Times. Maybe the Times journalist, Sarah Kate Templeton, who has done such a fantastic job in keeping this story running, week after week!, is on holiday? I noticed that the news coverage of the Nice announcement was written up by Nigel Hawkes, the Times' Health editor.

And I also noticed that he didn't do a very good job of getting his facts right!!!!

He states in his second paragraph about the drugs "Although they can extend life by up to six months..."

http://www.timesonline.co.uk/tol/life_and_style/health/article4474425.ec...

This will certainly come as news to all those who have been living a considerable time longer on them! Such as the patient in the USA (who posts on one of the MBs there) who is now on their SEVENTEENTH Sutent cycle, or someone again in the USA who was on the original trial, and is now 'no evidence of disease' (NED) some three years later....

Even the Daily Mail

http://www.timesonline.co.uk/tol/life_and_style/health/article4474425.ec...

quotes a UK patient who is on their NINTH cycle of Sutent, and is more than just 'still alive' a year later, he's now completely NED and back at work.

Bitterly, Karol Sikora's article is completely right on one horrible point - that the only outcome from the Nice decision is that those without 'spare assets' or health insurance will either have to bankrupt themselves (if they're lucky!!!!), or do what Nice clearly expects them to do. Die.

Perhaps we should rename the NHS the NDS - the National Death Service.

Julie

Hi Julie I agree with you that Karol Sikora makes some good points. However, if we went the way he wants it to go, then the NHS would be privatised. We can either have what we've got and fight to make it better or pay for treatment has he would like us to.

Kindest Regards, Terry

I think it might be my mistake reference the Sunday Times, I told Tom it was the Sunday Times, when in fact it was the Sunday Telegraph, sorry for that.
With regards to the NHS being privatised, I am not against that, we would all pay private insurance and get what ever we deem to pay for in return. You are paying National Health INSURANCE now , and as we so sadly found out last February, after paying into the system (that you are not allowed to opt out of) for 43 years for Tom and 40 years for me, when we really needed drugs they refused Tom, ANY kind of treatment. We fought for 6 hard long bitter months, stress levels through the roof to get funding, which we successfully achieved last month. I would hate for any other family to go through what we did. At one stage we thought we would have to buy the drugs ourselves and got the ball rolling to sell our home and other assets, but we were then told that if we should try and buy the drugs privately, the NHS would then withdraw the care Tom was already getting (scans and blood tests), now why be that spiteful, don't buy the drug and you can have the scans, buy the drug that the NHS will not give you , and they stop giving you a scan and blood tests . No sense at all. All we ever asked for was the Right To Try the drug, to see if it worked, if it does we will want to continue treatment, if not, then Game Over.
I believe I would fight to the ends of the earth to try and get anyone the Right To Try a Drug, if it is proven to work. NICE agree these drugs work , but they cost too much, what right do they have to put a price on anyones life. NICE costs £30million to run per annum, now that is a lot of drugs/treatment. The Human Rights Act states that you have a right to life. I believe the NHS needs overhauling and see where money is wasted, money that could be used more efficiently on the patients.
Here endeth my rant.
Steffyx

I can certainly see that the current situation with the NHS is just not acceptable, and I can certainly understand why more and more people are turning to the private sector....out of desperation!

Speaking of the private sector, I keep meaning to post about taking out insurance specifically to cover you in just this ghastly instanc, of being denied the best drug treatment for cancer. I resent having to do it, but it's better than being sent home to die....

Julie

Not quite up to date with what is happening, but I do believe that you can now get insurance that will cover you if you get cancer, sounds good to me, would be even better if they let you opt out of paying NHS contributions, and buy your own private insurance, but we have to do both in this country
Steffy

Read the Front Page of the Daily Mail today, also has something in the Daily Express,
Also on Page 112 of BBC Ceefax is a piece about 'Drug appeal Procedures Chaotic` this has been posted by The Rarer Cancers Forum, one in four appeals in the last 20 month period have been rejected, and often depended on where a patient lives(Postcode lottery). It states that one Primary Care trust had no successful appeals whilst a nearby trust had 96% success. This is getting outrageous. How many of these panels actually had an oncologist sitting on them, by my experience, both panels that looked at my case, did not have an oncologist sitting on them, and went against two oncologist's recommendations. I had to get a third oncologist report (which only backed up what the first two had stated) and my case looked at by another Primary Care Trust before my own PCT would fund me. It is a very sad fact when you are so seriously ill that you have to use your energies to fight the NHS, energies you should be able to use for your own survival.
Make as much noise about this as you can, support all cancer sufferers, email/write to your MP, email NICE, the Dept of Health , Alan Johnson, Ann Keen, Ben Bradshaw, Lord Darzi. Let them know that cancer sufferers are Human beings and not there to be discarded. If you have read this you are sitting at a computer , and are able to send an email, please take a few minutes to email your MP , NICE, or Dept of Health about the unfairness meeted out to cancer patients.
Tom

The Victorian poet Arthur Hugh Clough has given Nice and the NHS its perfect motto:

"Thou shalt not kill; but needs't not strive
Officiously to keep alive."

I find it deeply ironic (one word for it!) that the NHS agonises (rightly) over the morality of euthanasia, and yet, with a single press release, blithely condemns people to a grave considerably earlier than medical science can achieve.

Clough, who obviously had a pretty sharp tongue on him (!) also wrote, however, a poem that I hang on to in these dark days. It's over a hundred years old, so must be out of copyright and OK to include here.

Every word rings true for our situation!

"Say not the struggle nought availeth,
The labour and the wounds are vain,
The enemy faints not, nor faileth,
And as things have been they remain.

If hopes were dupes, fears may be liars;
It may be, in yon smoke concealed,
Your comrades chase e'en now the fliers,
And, but for you, possess the field.

For while the tired waves, vainly breaking,
Seem here no painful inch to gain,
Far back, through creedks and inlets making,
Comes silent, flooding in, the main.

And not by eastern windows only,
When daylight comes, comes in the light,
In front, the sun climbs slow, how slowly,
But westward, look, the land is bright."

We ARE struggling for the right to life, and we are NOT going to give up, go away, and die quietly. I will not be a widow before medical science has done EVERYTHING it can to keep my husband going. And I will not allow people, whose generous salaries mean they will NEVER have to face the prospect of 'death by poverty', raise their executioner's sword over others not as prosperous as themselves.

The battle continues, the war must be won.

All the best to us - here's to a brighter tomorrow!

Julie.

Stirring lines, and what we need to keep us going!

I of course fired off an email to NICE, as requested. It's all getting very bitter and high-profile, and I wonder cynically has this been timed to try to mask the "Chaos" (Observer 10 Aug 2008) "as £13bn NHS computer system falters" announcement? (sorry - don't know how to post a link yet) The Home affairs Ed listed eg. loss of data, erroneously cancelled operations, tracking problems, and cancer patients not being referred for urgent consultations....

Maybe this sudden withdrawal of drugs is to fund yet another computer system?

On a brighter note, the paper also runs an article on current trials testing new combinations of chemo drugs for resistent cancers. It reports successes, although I wonder whether these successes will go the way of the Avastin and be deemed too expensive once the trials are over.

xxx Penny

I think NICE chose their timing well, they probably want to fund a new computer system that works, that will be millions and they have to get the money from somewhere, so lets look at who we can bump off quickly, Oh there they are, the cancer patients, they will do, along with the arthritis sufferers, and of course those suffering from Alzheimers , right now how much more do we need, lets look at who will be next. As I have said before it is no coincidence that they announced this whilst MP's are on their summer break from Parliament and a little harder to get hold of, The opening ceremony of the Olympics (that will distract the cancer patients), then come out with the MMR scare, we will have an epidemic of measles if the children are not vaccinated. All very clever to bury the bad news with.
As you say a brighter note, success in research, but for how long, as we have discussed before what's the point of doing research and supporting charity shops that help, if NHS /NICE (read government) will not fund the treatments. They (NICE ) have acknowledged these drugs work, but will not fund them on the basis of cost . Toms oncologist said to him "it is my job to keep you alive for as long as possible, until the next drug/treatment comes along". That is what doctors are supposed to do, save life, so what is NICE up to? surely they are ,as Matt says, committing corporate murder, and I say murder because it is pre meditated.
We have to fight this all they way.
Tom

I'm still puzzling why my old hospital told me and my partner in May 2007 that there was "nothing more they could do", whilst the Marsden looked at the info and said they WOULD have been able to do more treatment - and we're not talking drugs discovered this year, but RT. These are certainly shark-infested waters we've been shipwrecked in! xxx Penny

Penny,
I suppose it comes down to not taking what these doctors say as Gospel, they are not always right, Tom and I always go together to appointments and go see the onc together, simply because what questions one forgets the other remembers. Having brought up a deafblind daughter and we had to fight all the way from hospital care, to schooling, I suppose we are pretty used to working out a plan of action. You have to keep on and on and not take no for an answer, if you think there is something that can be done,if you are not happy with what they tell you, then get a second opinion, look for the best hospital, specialist, search the internet, that is what I did for 6 months and eventually we had the very best team around us. I am so glad that you are now at the Marsden, and getting civilised help. You are right the way this government works and NICE treats cancer patients, we are certainly in shark infested waters, but even sharks can be harpooned. !!!!
Steffy

Yes, I wish that I'd bought this laptop sooner, but I always worried about money (partner has no contract, and, until a week before I went off sick, I only had one contract from my three jobs: I waited an extra two weeks before going to the doctor knowing this contract was coming - although it had been in the pipeline for 5 years) - this site has enabled me to seek out the Marsden.

As you say, you have had plenty of painfully-acquired experience with your daughter, whereas it never occurred to me that someone as experienced as the team I had would deliberately deprive me of treatment - mind you, after the mistake they had made...

It's an excellent idea to get a plan of action - but the problem is that the instant I got the chemo inside me I felt like death warmed up and couldn't have run anything. My partner is a very shy, quiet person who would not complain, is embarrassed when do, and is certainly no help at appointments: I usually found it best to leave him outside and I could filter the bad news so he didn't crumble. I suppose I just couldn't believe how incompetent or uncaring the medical staff could be. I think that you need to have insider-knowledge - which we do get on this site because we have so many former nurses.

My friend-of-a-friend has only just revealed that it was NOT my former consultant who cured her - but the Marsden. She and her Mum had connections with the NHS, and as soon as he gave her up, she got herself transferred. However, she neglected to mention this to our mutual friend until I'd got my transfer!

That's why I think this site is so important. Eventually it will build up a real treasure trove of Dos and Don'ts, What Should Happen Next and How You Should be Treated - and What to Do If You are Treated like ****.

How's it going with Tomdog? Lots of love to you both xxxx Penny

Hi Penny,
Tom is fine , he does not start his treatment until next week, so ask me in a weeks time, He has an endoscopy this Friday, and then we have a weekend away, friends wedding and staying with my brother, so that will be nice. Start the tablets on Monday , so we will see how he goes, the specialist said the best thing about having tablets is, you can control the dose much better. Hopefully Tom will be okay ,and it will make a difference. Hope to go to Lanz's Fiesta, all depends on how Tom feels. I do hope that the site will provides do's and dont;s and what should be happening next, I think Matt's top ten tips should be part of the bibliography as well.
Love Steffy xxx

Hi Penny,
Tom is fine , he does not start his treatment until next week, so ask me in a weeks time, He has an endoscopy this Friday, and then we have a weekend away, friends wedding and staying with my brother, so that will be nice. Start the tablets on Monday , so we will see how he goes, the specialist said the best thing about having tablets is, you can control the dose much better. Hopefully Tom will be okay ,and it will make a difference. Hope to go to Lanz's Fiesta, all depends on how Tom feels. I do hope that the site will provides do's and dont;s and what should be happening next, I think Matt's top ten tips should be part of the bibliography as well.
Love Steffy xxx

After all these painful months, how fabulous at last to be able to say 'it will depend on Tom's reaction to treatment'! Let's hope it goes really well of course - and it would be terrific to meet up in Leicester. Much love, Kate xxx

Dear Kate,
thank you for your kind words, it does seem to have been a long struggle, and still nervous, but as we said right from the start, after trying to get Tom some treatment, it became a crusade for the 'right to try the drug' , and we achieved that, I just feel now we have to support others that will not get treatment if NICE are allowed to refuse these drugs on the NHS. Hope to see you all at Leicester, will depend on how Tom is feeling of course, if not maybe one day in LOndon Kate.
Love Steffy
Tom is blowing you a kiss

Subject: 30 thousand pieces of silver

Hi, I'm a recently diagnosed cancer patient, and am slightly concerned that an arbitrary monetary value of £30k has been put on human life.

I'm sure you will be sick to death (?!) of this pun, but it's not very NICE of you.

I am fully aware that targets must be met, and cost effectiveness of drugs is vital. I wouldn't want to be denied treatment because the hospital can't afford it.

But try telling the cancer community that their struggle isn't worth the prescription cost.

I know I'm not in possession of all the facts, and I know that nothing in life, or death, is black and white. But please be aware how deeply disconcerting this is for us all.

Regards, Sim Handley.

I've just a standard reply from them about my own complaint, and it did admit that there have been a lot of responses. Apparently the decision is not quite ratified yet, as it has to go forward to yet another committee, but they don't sound sincere in taking into account our complaints. Nevertheless, let's keep sending those trenchant emails! xxx penny

Thanks Sim
for taking the trouble to object to the plans NICE have for cancer patients. They are replying to the emails, I think they have had quite a few objections. I have just had a reply from my email, I think it might be standard issue, but I have typed it out below.

I quote,
"
"I know that these proposals have disappointed many people living with this distressing condition, as well as those who care for and who treat them. Our independent advisory committee used the results of clinical studies carried on these drugs to guide them in making their recommendations. It's these studies that were used to obtain the licenses which allow the drugs to be used in the first place and which enable us to compare them with other treatments. Our job is to find out whether these 4 cancer drugs are any better than the current treatments, and if they are, whether the costs to the NHS is reasonable, given all the other treatments which have to be provided to everyone else. When treatments are very expensive, we have to use them where they give most benefit to patients.
What you say does matter,. Because we have had so many similar comments from individuals we will be bringing them together and summarising them before they are put to our independent advisory committee. Whether or not the final guidance is different from the draft recommendations, the members of the committee will be fully aware of what you and others think about this important decision.
A full copy of the appraisal consultation document relating to our guidance on this issue can be found on the NICE website. I attach a direct link to this area of our website below for your future ease of reference.
http://www.nice.org.uk/guidance/index.jsp?action=article&o=41473
(unquote)

you can sign into this document and add your views as a patient or a member of the public, I have done this as well as emailing, I think everything that you can do to object, adds more weight to this issue, If they do get the recommendations through, many thousands of cancer patients (not just renal) will not be able to get the best treatment , or new treatments, NICE will not fund it. So if you can get family, friends, work colleagues, anyone you can , tell them what is happening and get them to email their objections, as we have said before, please help yourselves.
Steffy & Tom

Hi Penny,
is my email the same as yours by any chance???, cannot imagine anyone sitting and replying individually to all the objections, you always get the standard reply from the Dept of Health, so cannot see why NICE would be any different.
Did you see that Alan Johnson is looking to usurp Gordon Brown as Prime Minister, !!!
God Help Us!!!!!

(Good Luck for Friday)

Steffy

I have registered my disgust with NICE thanks to Tomdog and Matt. NICE are having a "Excellence In Action" conference in Manchester on 3-4th December. If anyone would like to have a rant and cause a stir on the occasion to get some more media attention then please let us know and we'll start some preparations. The problem with the situation is that by the time these morons decisions impact on people's lives they are SICK!! and their families are struggling to cope. These decisions will affect millions of people for years to come.

They must be sick themselves to have the cheek to flag-wave these mendacious slogans. "Inaction" more like. Thanks, Metzy for letting us have details of this in advance. Yes, Steffy, of course, it is the old standard letter, but at least we are lots of us bugging them. xxxx Penny

I heard along the way on all this furore that Prof Littlejohns, CLinical and Public Health at Nice (who was quoted in his own press release on 7th August as say that the new drugs merely "have the potential to extend progression free survival by 5-6 months" without bothering to say that's twice as long as Interferon (which only works for 20% of people, compared with Sutent, at least, working for 70%!)...and letting some journos walk away and say in their stories that it gives only half a year of life (NO - it's half a year EXTRA over Interferon of PROGRESSION FREE life)(the Trial data - used by Nice itself! - that these figures come from clearly say that MEDIAN PFS on Sutent is ll months -Interferon gives only 5 months).

Moroever, MEDIAN overal survival is two years!!! And who knows what maximum possible survival is - I've heard of US patients still alive from the trial!!

...anyway, I heard (though I didn't hear it with my own ears!) that Littljohns, when pressed on Today, admitted that yes, if HE had kidney cancer and needed Sutent he'd buy it himself.... (on his salary I expect he can?!!!!!!)

So, here's a 'guardian of the nation's purse' merrily condemning citizens to a premature death, knowing he wouldn't go to the same early grave....

Julie

I agree with what you are saying Julie, Prof Littlesomething says, do as we say , but I won't be doing that myself.
I am beginning to think that all PCT's are told by NICE (government) not to fund new cancer drugs. Oxford PCT are going to try and justify themselves on BBC Radio Oxford today at 4pm link is
www.bbc.co.uk/oxford/local_radio/

I think that letters/emails should be written to local and National papers, Radio Stations, Local tv Stations, just to get as much media coverage as possible, What about TV programmes such as Panorama, One Show, BBC Current Affairs Department, GMTV, Question Time, any place you can think of, just send an email, raise the issue, keep the pressure on.

This really is all about money,
they provide Interferon on the NHS and it has about a 10% success rate, They will not provide Sutent and Sorafenib, Avastin and Torisel , and they have a much higher success rate, Sutent about 80%, life expectancy increase, much much more than Interferon, I know one man who has been on Sorafenib for 18months and doing fine. So it can only come down to money.They were ready to say yes to these drugs next March, now they are recommending that they all be discarded, leaving patients without help, hope, or treatment. Then they write an article that Cancer patients are more likley to commit suicide, now I wonder why!!! Now who has given the order to refuse such drugs? Alan Johnson?, Dept Health ? Prime Minister? and before we go shouting about getting rid of Labour and bringing in another party, I think we ought to find out where they all stand on the issue of new cancer drugs. So if you write/email your MP ask him/her their personal views, and maybe that might just influence your vote next time around.
If we don't make a stand now, more drugs will follow and be chopped. I say chop NICE and spend the £30million on patients instead of overpaid suits, that have no interest in you, only in money.
Steffy

Steffy, the more I think (and brood!) over the Nice guidance, the more I'm personally convinced that what is REALLY going on is a 'war' between Nice and the drug manufacturers/pharmas.

I really do think this is part of the NHS trying to tackle the pharmas by playing hardball. They are taking on, in this guidance, four powerful companies, with goodness knows what joint ££££, and saying 'IF YOU DON'T CUT YOUR PRICE WE WON'T APPROVE THESE DRUGS.....'

Now, this kind of brinkmanship is all very well - and yes, I guess that in a rough, tough capitalist world, why shouldn't the NHS which has to purchase from the commercial sector behave in the same way, intead of being regarded as 'free money' by commercial companies??!!

BUT, the problem is that the 'hostages' in this war/negotiation/hardball are the cancer patients!

Maybe, again, if Nice simply came right out and said: "IF you cut the prices THEN we'll approve the drugs" the public would be a lot more reassured. Right now, Nice simply come across as 'executioners' (and hypocrites!!!).

Nice should be CHAMPIONING the patients. JUST AS, the PCTs should be too. Every PCT that cannot find justification for putting patients on advanced drugs should be kicking up a stink about it!

The Chief Executives of the PCTs should be jumping up and down on camera and in the press saying 'It's disgraceful that we are HAVING to turn down patients the way we do because we have insufficient funding and drugs costs are too high'.

THEN they might earn public respect - instead of contempt.

Julie

While it would be good to think they are using the public to bully the drug companies, I don't believe it.

They don't do any of their own research, and if you want to see decent research reviews, look at Cochrane. They are based in Oxford I think.

I emailed them a couple of days ago and got the standard acknowledgement, but didn't expect to hear any more. They really are an overpaid quango. I did mention something about the drug companies not being all that hard up, and go and look at their premises if they wanted to see. (I don't doubt that that will or should remind them of their own premises).

This government tries to win brownie points by abolishing organisations, but then has to spend twice as much setting up new ones. What we need to do is to insist that NICE is forced to admit at least 50% members of the public and patient body or obtain their permission with a full explanation of their reasoning. They were supposed to make the NHS use generic basics, and make the NHS better and more efficient. All they are doing now is making silly recommendations. (They can't actually make decisions - the Birmingham UHB only listens to their recommendations and does what a proper university hospital should do.) The government needs to shake up NICE and make it do what it is supposed to do. Maybe combining it with and making it subject to the licensing of drugs authority. NICE makes recommendations on drugs not agreed by licensing, as safe. e.g. GM insulin.

Please do not lump the NHS and NICE together in one organisation. As we all know, different PCTs make different decisions, some of them abysmally stupid and mean, but that doesn't mean they are all the same. Nor that that NHS is of one mind with NICE.

I think we need to kick up a stink. There's one on the ground, so we just email all our MPs. Ours is the Health spokesman for Birmingham.

Hello everyone,

Following up Barry's request I wrote as you would have seen earlier in this thread to NICE - this morning I had a reply from the Chief Executive.

The comments made allowed me to ask further questions copies of which were passed to my MP ; Kate Smallwood as well as to Tomdog (Barry) and Steff. Barry has just E mailed me asking that I put my further response on the site SO FOLKS HERE IT IS...complete with the NICE (I don't think) reply.

Matt

Andrew Dillon
Chief Executive
National Institute for Health and Clinical Excellence

Dear Mr Dillon,

Thank you for what is clearly a generic reply to my recent E mail, I presume therefore my correspondence will now form part of the consultation process.

Receipt of a generic response is not unexpected however it fails to address the very real issue’s I have posed regard to the Human Rights of the patient and his/her family and the further issue of UK citizens opting to be treated elsewhere at greater costs to the NHS.

Your reply also states “these proposals have disappointed many people living with this distressing condition” this suggests that some people living with this distressing condition ARE NOT DISAPPOINTED – perhaps therefore you will have the courtesy to supply details “under the freedom of information act” of just how many people you are aware of who are happy by your proposals not to back the issue of these “clinically approved and quality of life changing drugs”

Your reply also states “When treatments are very expensive, we have to use them where they give most benefit to patients” again perhaps you will kindly explain exactly what greater benefit NICE considers there is to the patient above that of having as a result of treatment a better chance of improving the quality of, and actually extending their life – which is exactly what these drugs offer?

Yours truly,

Matthew J Embleton

--------------------------------------------------------------------------------

From: NICE Mail [mailto:NICEMail@nice.org.uk]
Sent: 13 August 2008 10:11
To: matt
Cc: hopep@parliament.uk
Subject: RE: Help required PLEASE

Dear Mr. Embleton,

Renal Cell Carcinoma
Thank you for your recent email concerning the Institute’s draft guidance on the use of bevacizumab, sorafenib, sunitinib and temsirolimus for treating renal cell carcinoma.
I know that these proposals have disappointed many people living with this distressing condition, as well as those who care for and who treat them. Our independent advisory committee used the results of clinical studies carried on these drugs to guide them in making their recommendations. It’s these studies that were used to obtain the licenses which allow the drugs to be used in the first place and which enable us to compare them with other treatments. Our job is find out whether bevacizumab, sorafenib, sunitinib and temsirolimus are any better than current treatments, and if they are, whether the cost to the NHS is reasonable, given all the other treatments which have to be provided to everyone else. When treatments are very expensive, we have to use them where they give most benefit to patients.
What you say does matter. Because we have had so many similar comments from individuals we will be bringing them together and summarising them before they are put to our independent advisory committee. Whether or not the final guidance is different from the draft recommendations, the members of the committee will be fully aware of what you and others think about this important decision.

A full copy of the appraisal consultation document relating to our guidance on this issue can be found on the NICE website. I attach a direct link to this area of our website below for your future ease of reference.

http://www.nice.org.uk/guidance/index.jsp?action=article&o=41473

Our consultation on this draft guidance closes on 29th August and our second appraisal committee meeting to discuss the response our draft guidance has received will take place on 10th September.

Further information on our technology appraisals process is also available in our document “A Guide to the Technology Appraisals Process” which can be accessed via the following link.

http://www.nice.org.uk/niceMedia/pdf/TAP.pdf

I hope this email has been of some help in explaining the current status of this guidance and the next stage of the appraisal process.
Yours sincerely,

Andrew Dillon
Chief Executive
National Institute for Health and Clinical Excellence
MidCity Place | 71 High Holborn | London WC1V 6NA | United Kingdom
Tel: 44 (0)845 003 7781| Fax: 44 (0)845 003 7785
In reply I have You would have read my letter to Nice

Hi Matt,

I also sent a reply to NICE asking them to tell me how many people living with this condition were 'Happy' with their decision. I think that if everyone who receives a standard reply from NICE does the same, they will look so silly, and I think we should also send it to Newspapers, and get media coverage . They really do not think their replies through very well, but then what else can we expect, they do not care about patients , they just look at £££££££££.
Lets keep up the pressure.
Steffyl

Just to let you know I have emailed nice and have recieved a reply, probably the standard message but hopefully if enough people do they will get the message.

Hi Kraftygirl,
I expect you got the same email as the rest of us, but I think we can turn it on them, email them again and ask them who they know, or can they give you a list of the people that are NOT disappointed with their plans, as they state in the letter that many are disappointed, which means there must be