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Failing to learn the hard way

One good thing to come out of the new GP contract is the removal of the dementia diagnosis DES. The stress it may have caused is incalculable.

It was forced on the profession in 2013 as part of a political project to boost the number of diagnoses. Early diagnosis, we were told, was crucial for the progress of the disease to be slowed. But, as we show today, that laudable aim was lost in a blunt incentive scheme that may have led to many people being wrongly labelled with suspected dementia.

This is the destructive pattern of how non-evidenced-based policy is implemented in the NHS in the 21st century

Under the scheme, many families across the country have waited on average 11 weeks to be assessed by a consultant psychogeriatrician and then told there is nothing to worry about. Even worse off are patients told their diagnosis is ‘unclear’ or that they have ‘mild cognitive impairment’, who then have to endure months more uncertainty and anxiety that is highly likely to cause harm.

Yes, it boosted the diagnosis rate from 42% to 67%, but there should be a full evaluation of whether the dubious benefits of early diagnosis outweighed the distress caused to those caught in the crossfire. But that will not happen now the DES has been scrapped. The Prime Minister’s ‘challenge’ has been met and the health service heaves a collective sigh and moves on.

And this is the destructive pattern of how non-evidenced-based policy is implemented in the NHS in the 21st century. The truth is that the dementia DES would never have got past the National Screening Committee (NSC), which concluded in 2015 that current tests do not ‘accurately identify those who have dementia and those who do not’.

The committee also said that before being able to recommend any form of dementia screening, it would need to be confident that early intervention would slow or even prevent the disease. ‘At the moment these treatments do not exist,’ its review found.

But the DES was a political imperative, so this expert opinion was ignored, and the scheme was branded ‘case-finding’ instead. It joins a rogue’s gallery of contentious schemes that have used this loophole: NHS Health Checks, the Avoiding Unplanned Admissions DES and (coming soon to a practice near you) NHS England’s proposed diabetes prevention programme.

Arguably, these schemes would all fail on at least one of the NSC criteria: that they must be backed by ‘high-quality’ RCT evidence; that no other cost-effective alternative is available; or that the ‘opportunity cost’ or any harms are balanced against the benefits.

Now I am not saying these schemes cannot do good or that we should abandon all hope of prevention in primary care. But let the dementia DES be a warning. With the best of intentions, they can cause harm and it is not good enough for the health service blindly to introduce them without having carefully weighed up all the evidence first. This is what we have the NSC and NICE for, after all.

And it is even worse to force though a scheme, watch it cause incalculable distress and then ditch it without even learning anything from the experience. Such negligence is the mark of a dysfunctional system and it has to stop.

Nigel Praities is editor of Pulse