A New Angle From NICE and Bureaucracy Gone Mad?…..

The debate has moved on, and yet again we see NICE using a new line of defence. They’ve clearly lost the clinical efficacy debate and that has been born out by ITV’s breakfast programme this morning and the numerous articles in the press this week (check out the rolling news in KCR). So, now the argument is that the NHS simply does not have the money to pay for the new drugs as they come on-line. I think the figures they are quoting say it will cost about half the annual NHS budget to keep cancer patients alive, anyway something like that.

This is a tough one and I hope we can come up with a response. The hardest thing I’ve found when discussing this subject with anyone outside of the Kidney Cancer domain is that they have a view that was much the same as mine was prior to getting the disease. That view was that “there must be a finite amount of cash available and to that extent tough decisions have to be made”. What I’ve also found is that if you try to broaden the debate and suggest ways of saving money elsewhere then you’re accused of over simplifying it or “getting off message”, it’s a catch 22.

We all know that there is a £1.75bln surplus in the NHS, we know that agencies such as NICE spend £4.5ml a year on the media etc, and yet obvious saving like this are seen as a distraction and nothing to do with the topic in hand. One of the examples I have from an IT perspective is this….. as part of setting up KCR we went through every PCT and hospital in the country and listed them in the index, address’ and website address’. I can’t remember exactly how many there were but it soon struck me as I was doing it that each of them had their own individual web presence. Apart from the sheer frustration of having to manually enter individual Web-Site address’ it just struck me that what an incredible waste of money this was, each PCT paying for it’s own individual web development. Who let them do this? Who made the decision to allow them to decentralise this? Total madness.  Madness not just because of the costs, but it’s made it more and more complicated to get information. One site with a list of all the PCTs with corresponding information, that’s all that was needed.

It’s these kind of chaotic decisions that’s making it tough for the NHS to afford real treatments.  Only about a year ago a program on BBC2 exposed just how much has been wasted on a centralised patient record system that nobody at the grass roots of the NHS felt was necessary.  Nobody even asked the users (i.e. people within the NHS) what problem they were trying to solve, they just made assumptions and went off and spent billions over many years on a system that nobody wants and has yet to even go on line from what I understand (could be wrong on that).

It’s bureaucracy gone mad as usual.  Each of these items taken on face value would not pay for the Cancer drugs, however it would not be beyond the bounds of possibility to think that collectively they could.  

The problem is we’re not allowed to talk about these things and we’re told we don’t understand the mechanics and we’re are making broad assertions …. “leave it to the experts”.  

The sad thing for me is that my observation says it has less to do with politics and more to do with the complete overload of institutes, organisations and committees etc, all playing and making decisions in similar spaces in the NHS creating blurred lines of responsibilities between each of them.  These blurred lines now mean that nobody has real ownership of the problem because they can all point to each other and say “nothing to do with me …. it’s them”.  I don’t know, maybe that’s the political aspect, maybe they were set up deliberately to confuse.  

However I’m not that cynical, I have faith in human nature; I just think they were setup with all the best intentions, and when one aspect hasn’t worked, rather than try and fix the problem at the root they just setup another layer. So this is why we’re stuck with such a huge management layer within the NHS.

I don’t know how we tackle these issues, they’re big and far from focussed.  Anyone got any ideas?

Posted under Andy Thomas, General


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