Not so Nice: the NHS trusts denying you drugs

It is likely that few people have read the NHS constitution (or, indeed, even know that it exists).  But there is an important section that patients should memorise:  2A, which states:  “You have the right to drugs and treatments that have been recommended by the National Institute for Health and Clinical Excellence (Nice) for use in the NHS, if your doctor says they are clinically appropriate for you.”

We all know, of course, that this is not happening.  Professor Sir Michael Rawlins, the outgoing chair of Nice, recently wrote in the Health Service Journal about a treatment for retinal vein occlusion which not all trusts were implementing.  Quite simply, patients not receiving this treatment risk scarring of the retina and loss of vision.

Then there are the couples denied IVF, despite the fact Nice has recommended three cycles for those eligible.  In fact, a parliamentary report last year found that 70 per cent of NHS trusts were ignoring the fertility treatment guidelines and separate research shows that probably one-in-four primary care trusts blacklist drugs that have been approved by Nice.

Now the Department of Health has issued an edict that the NHS will have to comply with Nice guidance on new drugs and treatments or explain to patients why there is a delay.  A new scheme will be introduced in the autumn which will include an “innovation scorecard”, allowing patients to see which organisations are quickly adopting the latest Nice-approved drugs and treatments.

Nice-approved drugs and treatments will also automatically be made available for doctors to prescribe across the NHS.

Under the current rules, trusts are given three months to provide a treatment recommended by Nice.  But the reality is very different.  In February this year, the Royal National Institute of Blind People contacted 125 hospital trusts to ask if they were providing the Nice-recommended treatment for retinal vein occlusion.

Of the trusts that responded, 45 were providing a full service and 37 were providing either a restricted service or no service at all.  There was aslo a worrying number of trusts who did not bother to answer the questions at all.

The problem has been that the sanctions for not complying have always been a tad timorous.  In fact, I have just asked two press officers what the current sanctions are for failure to implement a new drug treatment and they did not know.  And therein lies the flaw.  A legal obligation is not much use without a something to wallop the trusts with.

So, the government is now trying what amounts to a “name and shame” approach, using the power of the patient to force trusts into acting.  Health Minister Paul Burstow said:  “Patients have a right to drugs and treatments that have been approved by Nice.  The new regime will be a catalyst for change – we are determined to eradicate variation and drive up standards for everyone.”

There is some scepticism from the NHS Confederation which warns of increased “bureaucracy with no real benefits” and the Royal College of GPs, whose President Dr Clare Gerada said it needed to be more than a “bureaucratic tickbox”.

In his article, Sir Michael suggested that the ultimate sanction might end at the High Court.  He said that a charity could make an applcation for a judicial review but that the case would never reach the courts because the trust’s lawyers would advise they did not have a legal leg to stand on.

That, though, would be a huge waste of charitable funds – not to mention legal fees for the NHS.

So, the get-tough approach (if that is what a scorecard amounts to), may be the only way to go.  One question I have, however, is how does a trust marry its obligation not to overspend with its obligation to fund a treatment?

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