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10 January 2024

Do healthcare guidelines prioritise consistency over patient care?

Nice needs to lead the debate about treatments that may be too low-value to justify using NHS resources.

By Phil Whitaker

After the NHS celebrated its 75th anniversary last year, 2024 will see another important landmark: the 25th birthday of the National Institute for Health and Care Excellence (Nice). Despite being the more youthful party, Nice needs urgent surgery if its septuagenarian cousin is to survive.

Nice was set up to deal with variations in NHS access in England and Wales. There were two aspects to the problem. One was the “postcode lottery”. Decisions about whether to provide expensive medical treatments were being taken by health authorities at a local level. A cancer patient in Dartford, say, might get an extra six months of life thanks to a novel chemotherapy, yet someone with the same prognosis in Derby could be told the treatment wasn’t affordable. Nice was tasked with advising the whole NHS on whether to adopt medical advances – providing guidance on how well they worked (clinical effectiveness) and whether they were worth the price (cost effectiveness).

Within a few months of its inception, the fledgling organisation faced its first real test. The drug in question was an influenza treatment called Relenza. After evaluating the evidence, Nice decided not to recommend its use during the impending flu season. While there was clinical effectiveness, this amounted to shortening the illness by an average of a day; Relenza didn’t prevent serious complications, hospitalisations or deaths. This trivial gain would come at an unacceptable price, both in terms of cost and, importantly, the enormous workload implications.

The adjudication did not go down well with Glaxo Wellcome, the maker of Relenza. Threats of a judicial review, and of withdrawing the company from the UK were followed by a direct appeal to the prime minister, Tony Blair, who, with his health secretary, Alan Milburn, refused to get involved.

Much has changed. Nice’s decision-making has become increasingly politicised. Last month, the Pharmaceutical Journal published the result of a year-long investigation into the controversial approval of inclisiran, a cholesterol-lowering injection. Nice came under sustained pressure from the UK government to promote inclisiran despite a lack of evidence of clinical effectiveness. Why ministers and officials should have been so keen to rush out an unproven medication seems likely to involve a craving for dramatic “game-changer” headlines, mixed with scientific illiteracy inside Whitehall, and commercial lobbying.

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Nice’s recommendations still incorporate narrow cost-effectiveness considerations, yet they are published with no regard for value. Individual guidelines are churned out in isolation, a steady drumbeat demanding ever-increasing NHS activity for ever-more marginal returns. If Nice is to be of any use in the future, it must start asking and answering the question: which of the myriad things it recommends is worth society spending its finite healthcare budget on?

The other source of NHS variation that Nice aimed to tackle was the difference between individual clinicians’ practices. Nice’s guidelines have certainly ensured more uniform standards of care across a wide range of diseases. However, Nice was launched in an era when patients tended to have one thing wrong with them. Nowadays, multiple coexistent conditions and frailty are the norm. Nice’s single-disease guidelines don’t reflect the messy trade-offs required for modern practice. They result in patients being over-treated, and contribute to the pervasive misconception that “healthcare” can be dispensed by any Tom, Dick or Harry following a one-size-fits-all flowchart.

Reframing its guidelines as “evidence summaries”, with commentary as to the relative value of different interventions, would shift the emphasis back towards shared decision-making between clinician and individual patient. And Nice needs to lead the debate about which activities and approaches are too low-value to justify the consumption of limited healthcare resources. Then, we might have an advisory body fit for the realities of the present day.

[See also: “Associate” medics were meant to assist doctors, not replace them

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This article appears in the 10 Jan 2024 issue of the New Statesman, The Year of Voting Dangerously