The plight of the English patient

James Gubb, 22 August 2007

The EUROCARE-4 study of cancer survival rates released yesterday by the Lancet Oncology journal does not make for comfortable reading for anyone in the UK, least of all the government. In a league of 22 European countries between 2000-02, England comes out 7th bottom, Northern Ireland 5th bottom and Scotland 3rd bottom in terms of the number of patients alive 5 years after diagnosis – much closer to the slightly inferior performance of countries such as Poland and the Czech Republic than the best performing countries such as Sweden, Finland and Switzerland. Cancer survival rates in these countries are some 10 to 15 percentage points better than the countries that make up the UK. The same trend is observed for individual conditions – survival rates from stomach cancer, for example, are as much as 86% higher in Germany than in England.
More worryingly still, is the picture painted over time. A second article, also released in the Lancet Oncology, performs a similar study for the years 1995-99. Comparing the two shows that while cancer survival rates have improved across the board, and the gap between those with the best and worst survival rates is narrowing, those in the UK remain ‘stubbornly low’. Tellingly, this study also found that the UK (along with Denmark) seems to be the exception to the broad trend that those countries that spent the most on health care generally get the better survival rates. So what’s gone wrong?

The government’s traditional response to such studies is that data quality in the UK is much higher than that in other countries, so the results are not strictly comparable. It’s likely that there are many deaths from cancer in other countries that aren’t recorded, overestimating their survival rates. But this doesn’t hold much sway this time round. Yes, ten of the countries involved are represented by regional registries that could be misrepresentative of the country as a whole, but even Mike Richards, the government’s cancer tsar, concedes in an accompanying piece that ‘the authors provide convincing evidence that any biases or artefacts in cancer registration would be very unlikely to have accounted for the reported differences in survival between countries’.
That leaves the more obvious response – used by the government – that the 1995-99 study pre-dates the Cancer Plan introduced as something of a rescue package for cancer care in the NHS in 2000, and the 2000-02 study is too soon after its introduction to write it off. This is true, but does not hide the fact that most of the patients in the 2000-02 study did receive their treatment in the early years of the Cancer Plan and survival rates for all cancers have not only remained below the European average, but are also ‘noticeably similar to some eastern European countries that spend less than one third of the UK’s per capita health care budget’.
So, these arguments largely defeated, we can get down to looking at reality. We could of course look all day at where the immediate problems lie, and they are well documented: referral to treatment times for most patients is still well over one month; there is still a shortage of diagnostic equipment and the staff to work it; queues for diagnostics for patients whose symptoms don’t show stone-cold clear signs of cancer can still be as much as 6 months; referral patterns themselves remain archaic and take too long (GPs cannot order diagnostics for cancer; patients must see a consultant first); and the uptake of new cancer drugs is one of the slowest in the world.
But the bigger problem is identifying the source of these quandaries, and suggesting a solution. We can either just throw yet more money at the system and hope that somehow everything will miraculously get better, or we can concede there are much deeper reasons why cancer care in the UK is systematically worse than that in other countries and embrace meaningful reform. The latter course is the way forward.
The crux of the problem is that the Cancer Plan, for all its good intentions, is symptomatic of an NHS that remains centrally planned and centrally directed. True, it created for the first time ‘networks’ of cancer care from primary care to cancer units, which are supposed to ensure cancer services are coordinated and comprehensive, but in reality these are top-down structures distant from patients and in which PCTs often struggle to get a meaningful input. The approach has instead succeeded in creating a massive layer of confused bureaucracy that still merely tries to guess where and what resources are needed in which areas, rather than being in any way responsive to needs on the ground. Thus we hear ludicrous stories of new linear accelerators ‘still lying in boxes in warehouses’ because there’s no trained staff to operate them and an organisational structure that is so rigid that implementing any real change is a nightmare. The All-Party Parliamentary Group on Cancer reported in 2004: ‘Locally [the NHS] has struggled with radiotherapy where we have [examples of] 16 PCTs using a cancer centre an requiring the agreement of all 16 parties to do anything’.
But perhaps even more damaging than central direction per se, has been the target-driven culture that the government have embraced as a tool to drive up standards and measure performance in cancer care (and across the board). Initially the government set targets for waits between a GP referral and seeing a specialist, and waits between being diagnosed and receiving treatment. Unsurprisingly the time taken in between for diagnostics was neglected and money directed elsewhere. Yet speedy access to diagnostics is perhaps now the greatest problem in cancer care. Other examples are not difficult to find. The also government set a target for a two-week wait for urgent cancer referrals, but the urgent referral notice has been so captured by the ‘worried well’ middle-classes, according to the BMJ, that ‘an alarming two-tiered system of treatment has been created’ – an estimated 8,800 women eventually diagnosed with breast cancer were labelled ‘routine’, not fast-tracked, and suffered as a result.
The way cancer care is organised urgently needs to change. And fast. The authors of the EUROCARE-4 report certainly do not pull their punches:
‘Our concerns illustrate the considerable challenges that now face the UK government if it is to make the NHS work efficiently and effectively. We make no apologies…indeed the answers are likely to lead to a fundamental reassessment of the ways in which the NHS operates and this, in turn, is likely to take politicians into uncomfortable territory – such as divorcing the NHS from political control and short-term political gains’.
This would be a good start – and one that should begin by scrapping the targets. Of course, performance should be measured, but data should be collected across the cancer care pathway and be much more comprehensive than the narrow and distortionary focus of targets. But the more important long-term question is how to keep the government’s fingers out of the NHS pie and, more comprehensively, put an end to central direction. Merely removing government influence is probably not enough, because there are plenty of other bodies in the NHS who have an itch for interfering – the DH and SHAs in particular. This will only happen if there is a sea-change, the government commits to its own reform package and real competition is introduced between NHS providers.
Cancer care should be opened up to competitive tendering, including from the independent sector, and patients should have a real choice about where to have their cancer treatment. People will complain that this will lead to the fragmentation of cancer services, but far from it. Competition will drive performance. Driven by the need to respond to patients, to provide the best possible level of care, and free from the reaches of central direction, providers would in fact be much more likely to produce streamlined and innovative systems that can provide services from diagnosis to rehabilitation for those with cancer. Examples already exist – CancerNetwork UK is one such case. Established by Karol Sikora, a former advisor to the World Health Organisation, it is an independent organisation that works with the NHS and others to treat patients in modern holistic cancer centres where, unlike in many parts of the current NHS, the latest technology in radiotherapy and chemotherapy is available without the long waits.
This model of care is typical in other countries where there is not the same rationing of new treatments, providers are in competition and the system is funded, away from government meddling, by universal insurance schemes. The BBC ran an article recently comparing cancer care in France and the UK:
‘The Centre René Gauducheau is a functional modern building on the outskirts of Nantes. It is one of 20 specialist cancer centres in France and patients who come here know they are likely to get the best treatment.
Patients at the cancer centre don’t need to worry that their radiotherapy may be delayed as can happen in Britain. France simply has more radiotherapy machines. Whereas the UK has 279 linear accelerators, France has 336 – 20% more for the same population.
France also has more doctors – meaning faster access for patients. The UK has 2.3 doctors for every 1,000 people. France has 3.4 – that’s 50% more doctors.
The NHS has some of the finest cancer specialists in the world, and new techniques and treatments mean that survival rates are steadily improving. And yet France does even better, with the best survival rates in Europe.’
With the right system in place, there’s no reason why this shouldn’t be so in the UK.