Would We Have the Nerve?

It will remain to be seen whether or not the release of 25 year follow-up data from the Canadian National Breast Screening Study will prove to be a game changer, but what if it did? What if its findings – that regular screening mammograms have no impact at all on mortality from breast cancer, and result in harm from an overdiagnosis rate of 22% – were proved to be irrefutably true? What then? Would we have the nerve to act? Could we ever give up the UK screening programme?

There can be no doubt that if the Canadian study were the only research available then mammography could not be recommended – we would conclude that it does more harm than good and be done with it. We should never rely on one study, of course, and other studies have shown routine mammography in a more favourable light. It is, however, the only study of significant size to be undertaken in the modern context of more effective breast cancer treatment and it is not the only time in recent years that mammography has been brought into question. So what if we were to believe its results?

What would happen if the UK National Screening Centre (UKNSC) were to withdraw its support for breast screening? We are used to new programmes being introduced, but not an established one being cancelled; after 35 years of endorsement and public health advice exhorting women to take part in screening, it would be quite an about-face to tell the population that it wasn’t such a good idea after all.

There would be all the mobile screening units for starters – what would we do with them? Replace the x-ray machines with ultrasounds and expand the aortic aneurysm programme? Cut our losses and sell them off to a haulage company? What about all the staff involved in delivering the programme? Or the expertise the NHS has acquired in reading mammograms? There would still be a role for the x-ray in symptomatic women, but there would be huge over-capacity if the screening programme were to be stopped in its tracks. I’m certainly not rushing out to buy shares in a company that makes mammography equipment.

More of an issue, though, is the political challenge that any change in policy would encompass. It is well-known that no matter how compelling the argument might be for closing a hospital, trying to actually do such a thing is usually akin to political suicide – would the same be true for whichever unfortunate cabinet minister was left to announce the cessation of screening mammograms? Would the move be seen as anti-women? What would the pro-screening lobby have to say? There are enough men who are angry about being ‘denied’ a national prostate screening programme despite the evidence that it would do more harm than good. The belief that early is always better, and knowledge is always good are so deeply ingrained that they are often maintained despite any amount of evidence to the contrary.

Any woman who has had to endure the rigours of treatment for a breast cancer picked up on a mammogram can be expected to believe wholeheartedly that the whole process has saved her life – how else could anyone face going through such difficult treatment? What, then, is she to think if she hears of other women being denied the same chance to live? Can we expect everyone to make a clinical assessment of the evidence on such an emotive issue as breast cancer?

Perhaps the biggest hurdle of all, however, will be the NHS Mandate. Enshrined within this document is a drive to bring down five-year cancer survival rates; those figures that are thrown at the NHS from time to time as the UK is told how poorly we compare with the rest of Europe. The best way to keep five-year survival figures low is to concentrate on screening – catch it earlier, survive longer – and not to worry too much about mortality rates. If the Government ever sanctioned the cessation of the breast screening programme we would slip even further down the league tables and the goals of the Mandate would be harder to reach – even if it was better for the health of the nation, this could be too much for those in power to stomach.

I don’t know where the evidence will move from here – more studies perhaps? Another Cochrane review? Perhaps the UKNSC will deliver a verdict. What really matters, though, is whether we could ever act on the findings; if we have been doing the wrong thing for the last 35 years, could we ever find the nerve to change?

This past was originally posted in Pulse magazine (free subscription required)

Whisper it: UK Cancer Care is Better Than We Think

The prevailing narrative surrounding cancer care in the UK is one of self-depreciation. Patients are assumed to be reticent about seeing their GP when they develop symptoms, either due to the stereotypical British stiff upper lip, or because the Great British Public is wallowing in such ignorance that it is in dire need of yet another awareness raising campaign. GPs are derided for being a barrier to referral, and are generally regarded as being in constant need of retraining. Even if you do recognise the symptoms and fight your way through the wilful ignorance of your GP, we are led to believe that the sole purpose of NICE is to deny you the life-saving treatment you would receive in any other developed nation. The end point is the recurring complaint that the UK ‘lags behind’ the rest of the world.

We are so used to hearing the negative voices that envelop UK cancer care that it can be rather startling to hear the occasional good news story that somehow slips through into the media. The recent report that GPs are actually really rather good at spotting cancer is a such an example. This national audit of cancer patients demonstrated that most patients presenting to their GP with symptoms of cancer are referred after only one visit – with a median referral time of zero days for these patients – meaning that they were referred on the day of presentation. Overall, more than 80% were referred within two consultations, and those that took longer tended to be cancers that were harder to spot in the first place. The lead author Georgios Lyratzopoulos said: “Much is assumed about GPs spotting cancer late, but these data show that in the great majority of cancers the suspicion is made promptly.”

The overall picture in cancer care is surprisingly positive also, with cancer death rates on the decline, and projected to continue to fall over the next two decades, and the World Health Organisation Cancer Mortality database places the UK comfortably in the middle of the table, just above Germany – maybe British patients aren’t so neglectful in their health-seeking behaviour after all.

Whenever the evidence points in a positive direction, the good news is frequently welcomed with an air of reluctance – you can almost hear the grinding of gritted teeth in the sound bites. Sara Hiom, early diagnosis director at Cancer Research UK, reacted to the audit on GP referrals with: ‘Progress is clearly being made, but one in five people have to make more than two visits to their GP,’ while the Department of Health responded to the excellent news about falling death rates with: ‘These figures reflect improvements in cancer services, but we know there is still more to do.’

Of course we should not be complacent, but the dominant perception that cancer care in the UK is somehow inferior to much of the developed world should worry us – because there are too many vested interests that depend on keeping up this bleak outlook. Politicians benefit, as they know that declaring: ‘We must do better,’ is always a vote winner; cancer charities are nervous about good news because their funding depends on their still being a job to do; while those right-wing commentators in search of a US-style health service will relish anything that allows them to bash the NHS.

This is no mere philosophical debate, but a key driver for major NHS policy – the NHS Mandate seeks to save lives by reducing mortality rates from cancer, but then demands an improvement in 1 and 5 years survival rates – the favoured statistic of those who seek to downplay UK performance and a dangerously unreliable method for comparing one country with another. If we allow this misdiagnosis of cancer care in the UK to continue, we will be vulnerable to accepting treatments we do not need – increased screening, over-diagnosis and over-treatment in particular – and all the associated harms of unnecessary intervention. It is time to stop whispering, time to stand up for the NHS, and say, loud and clear: ‘Actually, we do pretty well!’

This article was originally published in Pulse (access restricted to healthcare professionals).

The Drive to Improve 5 Year Cancer Survival – an NHS Priority, or Political Folly?

In the original Johnny English film, Rowan Atkinson’s hapless spy performs a flawless daredevil penetration into the heart of a hostile occupied building. Dropped by helicopter onto the roof, his use of grappling irons is exemplary, his ability to move through locked doors and windows – textbook. Flushed with his own success, it is only after assaulting several members of staff that he realises he has inadvertently broken into the local hospital instead of his intended target.

If you are going to invest a lot of time and effort into something important, no matter how good your intentions might be, it is vital to aim for the right target.

When the Government published its NHS Mandate earlier this month, a cornerstone of the proposal was the commendable aim for the NHS to be better at Preventing people from dying prematurely. A key aspect of this is to look at deaths from cancer – so far so good. The details, however, is where there is a problem – the focus is to look at 1 and 5 year mortality rates. It is quite simply the wrong target and will result in bad decisions that will be bad for patients and wasteful of scarce NHS resources. The target should be overall mortality, nothing more and nothing less.

5 year mortality data were originally devised to assess the effectiveness of treatment. Here they are useful – if you want to know how one chemotherapy regime works compared with another then the overall 5 year mortality can be very helpful. The problem comes when we use it to assess overall performance, or start comparing data for different countries. We end up with disturbing headlines such as this from the Daily Mail in 2009. These cause politicians real headaches, and the danger of knee-jerk reactions and bad decisions.

The problem with 5 year survival is that they are so easy to manipulate – and the easiest ways to do this bring little benefit to patients, or even harm. The hardest way to really improve survival from cancer is to genuinely improve treatment and care – this is expensive, requires investment in the people who run cancer services, often relies on medical breakthroughs and has no guarantee of success. There are far easier, much more reliable methods for achieving results if you are so inclined, and two may prove irresistible to politicians so dependent on a quick fix and the next set of statistics.

Technique 1: Diagnose cancer earlier

If you have a cancer that is incurable and you are going to die in three years time despite whatever treatment medicine can offer, then you will fall the wrong side of the 5 year statistic. If, however, I can persuade you to be diagnosed 2 years earlier – through an awareness campaign, or cancer screening for instance, then even if I don’t change your outcome one iota you will have crossed magically into the success side of my statistic – Tada! Of course, for some people an earlier diagnosis may make a difference to their outcome, and we would always want to reduce delays once someone develops symptoms related to cancer, but the evidence is that early diagnosis through screening has a limited impact on overall improvements in survival.

Another, more powerful, lure of early diagnosis through screening is the prospect of picking up cancers that are so early that they would not ever become a problem. If these cancers go completely undetected then they will have no impact on the statistics. If, however, they are diagnosed they will, by definition, be treated successfully, and they will add a rosy glow to the 5 year survival data. To take prostate cancer as an example. If you screen for prostate cancer you will save lives – but for every life you save you will need to treat 48 other men who would never have died from their ‘cancer’. Without screening there would be one man who will enter the data, and may or may not survive 5 years. With screening 49 men become statistics – and they are all on the good side. This is a compelling political argument, but is it good for patients?

Technique 2: Redefine Cancer

Cancers like pancreatic cancer are what we all think of when we use the Big C word – nasty, aggressive diseases that are almost impossible to treat and spread rapidly. If the NHS is to be tasked with improving 5 year survival for pancreatic cancer then it is on a hiding to nothing – medicine needs to move on and make a break-through if that is to happen. So to balance the books, as it were, there is a great temptation to put as many easy to treat cancers on the other side of the scales as possible, and the best way to do that is to redefine what we mean by cancer. Terms like Ductal Carcinoma in Situ, which is really a pre-cancerous change in the breast of an uncertain nature, have come under the cancer umbrella in recent years. Treated like any other breast cancer, the survival is phenomenally good and it is fantastic for statistics, but the evidence is that many women are treated for it unnecessarily as it will not always develop into a true cancer.

The Importance of Mortality Data 

The problem with relying on 5 year survival is that it encourages Governments to endorse screening programmes on the basis that they improve statistics, rather than being good for patients. It is vital that all screening programmes are rigorously evaluated for both benefits and harms before they are implemented. If the NHS Mandate looked at overall mortality from cancer instead then the drive to improve would be free from these pressures to artificially manipulate statistics, and the focus could be on better care, as well as public health initiatives that might really make a difference, such as plain packaging for cigarettes.

The Government might even be pleasantly surprised. In 2008, the most recent year where full data are available, the World Health Organisation database ranks the UK quite favourably – just above Germany and better than most European countries outside Scandinavia. Maybe a pat on the back is in order for the NHS? Or is that not politically permissible these days?