22 Jan 2014

What can Nice do when health providers are naughty?

For a long time there has been evidence that treatments are being denied to patients despite having been approved by the National Institute for Health and Care Excellence (Nice).

Several times in the past few years I have rung around the various funding bodies and asked how many cycles and under what circumstances they were prepared to pay for IVF.  It varied wildly across England and often bore no relation the the recommendations made by Nice.  (in fact,  now that Nice has recommended extending NHS treatments to women up the age of 42, I suspect there are even more commissioning groups ignoring the guidelines).

But today’s report from the Health and Social Care Information Centre – a Government quango that provides and analyses healthcare statistics – reveals the sheer scale of the treatments being denied to patients.   Now it may be argued that IVF -or lack of – is not life-threatening.  But some of the drugs that have been NICE-approved are life-saving.

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One in three patients who could have benefited from a drug for kidney cancer have note been given it.

Again, one in three patients have not been prescribed riluzole, for motor neurone disease.   Thousands of patients are victims of this variation in prescribing.

One charity described it as an “endemic and disastrous postcode lottery”.  And, of course,  the irony of this is that the establishment of NICE under the last Labour Government was meant to rid the NHS of precisely that – the postcode lottery that existed.

This current situation is not the fault of Nice.

Although it is an organisation that has its critics – often led by drug companies – because it has refused to recommend a particular drug, it remains a widely-admired system for dealing with the cost of an increasing number of drugs in a health system with a decreasing budget.

Where the problem appears to lie is in the failure to incorporate into the system the ability for Nice to do anything much about the refusal of local funding bodies to fork out for these drugs.

Several times I have asked what action they take when there is evidence that guidelines are being ignored.  They usually come back and say that they “work with the relevant organisation”, which always sounded like they send them a stiffish letter and that is that.

They have never provided examples of how often they do this, so it has taken until now to understand just how often these guidelines are being flouted.

At one point there was a suggestion of fining the local authorities (as they were before the reforms) but that would be a waste of NHS money.

Yet (and I don’t know if this has happened) this situation must leave local commissioning groups – those who decide where and how to spend their money – open to legal action by a patient refused a drug that could prolong their life, when down the road another patient with exactly the same condition has received it.

In fact, Nice said in response to today’s report that it hoped that this would ensure guidance was followed more widely, and that local NHS groups needed to justify the variations.

I am sensing that is going to get them quivering in their boots.

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