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.

3 Comments so far

  1. stillalive February 27, 2010 12:18 am

    RE: surgery for stage IV with IVC/Atrial involvement.

    NICE/European Urological Guidelines say you are entitled to surgery for this – PUBMED has literally dozens of highly successful ops for this now, and excellent chances of still being alive and disease free in 10 years, REGARDLESS OF AGE – so why are so few stage iv patients told in an undertakers voice ‘sorry theres nothing we can do’? ANSWER – the op requires a brief stint on cardiopulmonary bypass equipment – and there are only 13 hospitals in the entire UK with this – their waiting lists are full of their own cardiac patients, so we can go away and die! Stuff that – insist on nhs choose and book referral to guys and st thomas’ (which has this equipment) or go to America and live!

  2. stillalive February 27, 2010 12:22 am

    Your life is all that matters – so play the system – find an area in which they do prescribe it, rent a bedsitter and switch to a gp there, who will have to refer you into a hosptial of your choice – ring them up and find out which ones prescribe what you want…
    If the postcode lottery doesn’ t work for you – change your postcode!

  3. stillalive February 27, 2010 12:35 am

    Eur Urol. 2009 Jun 21. [Epub ahead of print]

    Long-term Survival in Patients Undergoing Radical Nephrectomy and Inferior Vena Cava Thrombectomy: Single-Center Experience.
    Ciancio G, Manoharan M, Katkoori D, De Los Santos R, Soloway MS.

    Department of Urology, Miller School of Medicine, University of Miami, Miami, FL, USA.

    BACKGROUND: Renal cell carcinoma (RCC) with a tumor thrombus extension into the inferior vena cava (IVC) demands aggressive surgical management. OBJECTIVE: To evaluate the long-term survival in patients undergoing radical nephrectomy and IVC thrombectomy. DESIGN, SETTING, AND PARTICIPANTS: We performed a retrospective analysis of 87 patients undergoing surgery between 1997 and 2008. The patients were grouped according to the extent of tumor thrombus, with level I involving the IVC at the level of the renal vein, level II being infrahepatic IVC, level III being intrahepatic IVC, and level IV being suprahepatic IVC or right atrium. Relevant clinical and pathologic data were analyzed. MEASUREMENTS: Disease-free survival (DFS) and disease-specific survival (DSS) were studied. RESULTS AND LIMITATIONS: The median follow-up was 22 mo, and 19, 14, 40, and 14 patients had level I, II, III, and IV IVC thrombus, respectively. Among patients with M0 disease, 22 developed metastases. The 5-yr DFS (disease free survival) was 64% for all levels and 74%, 69.5%, 59.5%, and 58% for levels I, II, III, and IV, respectively.
    Patients with level IV thrombus had a significantly lower 5-yr DSS compared to level I (p=0.03). However, when analyzed in two groups-supradiaphragmatic and infradiaphragmatic-there was no significant difference in DSS (P=0.14). On univariate analysis, metastasis at presentation, non-clear-cell histology, lymph node metastases, and higher nuclear grade were statistically significant prognostic factors influencing DSS. Only higher nuclear grade (p=0.03), metastasis at presentation (p<0.01), and non-clear-cell histology (p=0.03) were independent prognostic factors on multivariate analysis. CONCLUSIONS: Radical nephrectomy and IVC thrombectomy offer reasonable long-term survival. The level of tumor thrombus is not an independent prognostic factor. Distant metastasis at presentation, higher nuclear grade, and non-clear-clear cell histology are significant prognostic factors influencing DSS

    ie ALL still alive at 5 years after the op, irrespective of how far up the vena cava the tumour was growing! Even if its right up, 53% of you will be disease free in 5 years with the op! They just haven't got the equipment in every area to do this before a bit of the tumour shoots off and causes a pulmonary embolism! And even if you have an embolism – hey , in the states, thats no problem either, as they just fish it out at the same time they do the kidney!
    The lies we were told about 'no treatment being available apart from chemo and palliative care!

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