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Last Updated: Tuesday, 25 May, 2004, 09:12 GMT 10:12 UK
Is anyone listening to NICE?
By Ray Dunne
BBC News Online health staff

NICE decides what drugs should be available on the NHS
Is the National Institute for Clinical Excellence doing a good job?

It was billed as a revolution in healthcare.

The National Institute for Clinical Excellence would, according to ministers, transform the NHS.

It would eradicate the postcode lottery, which meant patients in some parts of the country had access to life-saving drugs while others did not.

But five years on and even the institute itself admits it is not having as big an impact as it had hoped.

By the end of this year, NICE will have issued 150 different guidelines, all of which are supposed to be binding.

These range from a recommendation that IVF should be available on the NHS to a decision to restrict some multiple sclerosis drugs.

Controversial rulings

Many of its rulings have been controversial. However, even more controversially, it now appears that many of its rulings have also been ignored.

Figures released this week suggest that as many as one in three of its guidelines may fall on deaf ears.

Hundreds of thousands of patients have benefited from NICE guidance
Andrew Dillon,
NICE chief executive
Researchers at Abacus International examined the impact of 28 NICE guidelines on the NHS.

This included a 2002 ruling that people who are morbidly obese should be offered surgery and a recommendation in 2001 that women with advanced ovarian cancer should be given a chemotherapy treatment called topotecan.

They found that just 12 sets of guidelines had been implemented properly. Another 12 were under-implemented, while four had been over-implemented.

The findings appear to back up claims from the pharmaceutical industry and patient groups that some NICE guidelines are simply being ignored.

A recent report from the Association of the British Pharmaceutical Industry suggested that NICE guidelines were having little or no impact.

"We don't see any kick in when guidelines are published," says a spokesman.

"Those who have not been using particular drugs are still not using them after the guidelines are published."

The report suggested that a lack of money and poor organisation at local level are to blame.

However, the NHS Alliance, which represents primary care trusts, believes the reasons are much more complicated.

"Some people refer to NICE as the organisation that can't say no," says Dr Michael Dixon, its chairman.

"NICE tends to approve a lot of procedures and medications that simply aren't a priority on the frontline.

"The fact that some NICE guidelines are ignored is not necessarily a bad thing."

Affecting patients

Not everyone agrees. Charities say the failure to implement NICE rulings means some patients are not getting the treatment they need.

"Availability of some drugs and therapies remains patchy across the UK and the postcode lottery is still with us," says Antonia Bunnin of Breakthrough Breast Cancer.

"All who could benefit should have access to the best available care and treatments."

NICE has now announced plans to beef up its efforts to ensure the NHS is taking its recommendations on board.

It is working on plans to appoint a new executive director, who will oversee implementation of its guidelines.

The fact that some NICE guidelines are ignored is not necessarily a bad thing
Dr Michael Dixon,
NHS Alliance
It has also vowed to work more closely with the NHS and industry to ensure its guidelines are not disappearing into the ether.

"Hundreds of thousands of patients have benefited from NICE guidance since the institute was established in 1999," says Andrew Dillon, chief executive of NICE.

"We have been talking to people in the NHS and in our wider stakeholder community about the implementation of our guidance and we believe that by working effectively with the NHS and with our national partners, we can help the NHS do even better."

However, many believe the institute could be doing much more to ensure its recommendations are implemented.

Charities say it could empower patients by publishing more information on its website.

They also want the new NHS inspectorate, the Healthcare Commission, to ensure doctors are following the guidelines.

"Patients deserve to have accurate data about prescribing patterns to enable them to make an informed choice about the location of their treatment," says Joanne Rule, chief executive of CancerBACUP.

"Implementation also needs to be fully enforced by the Healthcare Commission to ensure that the postcode lottery for cancer drugs is ended once and for all."

Doctors say the guidelines could be more reader-friendly and that the institute could do more to explain why they should change the way they work.

"NICE sends out a set of guidelines every other week, " says Michael Dixon.

"It comes in the form of a thick booklet. I have enough of these booklets to wallpaper my entire surgery.

"I and many other doctors simply don't have the time to read it.

"If NICE really wants to change the way we work, then it needs to engage us more and to explain to doctors why they should change."

Q&A: What is NICE?
14 Oct 02 |  Health

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