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.