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For​ the last ten years GPs have been paid, by the taxpayer, to deliver ‘general medical services’ through a scheme based partly on incentives. ‘Quality of care’ is assessed using an ‘outcome framework’ known as QOF, whose parameters relate to expected best practice when treating various long-term diseases. Someone with diabetes, for example, should have his cholesterol checked regularly, his blood pressure kept below dangerous levels, and be given medication to keep his blood sugar acceptable. At least once a year, I see all my patients who’ve suffered a stroke to check that they’re on the right treatment to thin the blood, to monitor their blood pressure, and to make sure they have been referred to appropriate specialists. Scores of outcomes like these are measured by each local health authority, and GP practices are funded in large part by payments derived through this scheme.

There have been many criticisms of QOF: that it deprofessionalises doctors, that it encourages a tick-box approach to medicine, that it leads to diagnosis of conditions that a patient might otherwise never know they had (‘over-diagnosis’) and the treatment of which might be harmful. But on the whole the scheme has been accepted because it has been shown to improve some aspects of care, and because patients can choose whether or not to be involved. Every drug has side effects: driving blood sugar too low can make you feel dizzy and weak, and blood-thinning drugs carry a risk of haemorrhage that can be just as devastating as a stroke. I explore with each patient how tightly they wish to adhere to ‘best practice’, discuss which side effects may be acceptable to them and which wouldn’t, and generally tailor their care as much as possible.

The government’s health policy reached new levels of absurdity last October, when it was announced that GPs would be paid £55 for every diagnosis of dementia they could enter in a patient’s notes. It was to be a short-term initiative, set to expire before May’s general election – it’s said the Department of Health was keen to meet a target. Simon Stevens, the CEO of NHS England, said that patients had a ‘basic human right’ to know if they were becoming demented. Jeremy Hunt, the health secretary, never one to boost morale when there’s an opportunity to attack it, called the level of dementia diagnosis in England ‘a national shame’. Presumably Hunt and Stevens took the purportedly low diagnosis rate as evidence of poor care, and intended the incentive scheme as an extension of QOF. But paying doctors to make a diagnosis is very different from paying them to maintain high standards. Diagnostic labels can prove stickily difficult to unmake, and dementia is diagnosed through a subjective clinical assessment rather than an objective blood test or brain scan. The tests examine memory and cognitive processing; many patients may meet the criteria for a label of ‘dementia’ one day, but not the next. Another difference is that in QOF, patients can decide whether or not to be involved in ‘best practice’, but they have little opportunity to challenge a new diagnosis.

There’s something crucial at stake here about the new way of practising medicine. The extraordinary advances of the last fifty years in public health and specialised care have led to better and better life expectancies: millions now live for decades with diseases that once would have killed them in months. There was a time when, if you suffered a heart attack, you were given oxygen, morphine and nitroglycerin while doctors waited to see if you lived or died. Now you can expect to be rushed into a cardiac theatre, to have your coronary artery re-expanded with clot-busting drugs and a stent, then to be sent to high-dependency care, perhaps now with an intra-aortic balloon pump or ventricular assist device, possibly after that to receive a bypass graft, before ultimately leaving hospital on five or six new drugs, which you’ll take for the rest of your life. The massive expansion in the number of people who have survived strokes, heart attacks, cancer or any number of other afflictions, is a magnificent success story. But it also means that GPs spend most of their time managing the care of patients with chronic disease rather than those needing acute, reactive care. This expansion in the burden of care has taken place without any concomitant transfer in resources, which is one of the reasons so many people think it is easier to turn up at A&E, not the GP surgery, when they want a quick fix.

Following the announcement of the dementia diagnosis initiative, a group of practising clinicians signed an open letter printed in the British Medical Journal and addressed to Simon Stevens and Alistair Burns (the national clinical lead for dementia) asking for the scheme to be withdrawn. Although the scheme was designed only for England, where England leads the devolved governments often follow, so although I practise in Scotland I signed the letter. The dementia scheme, the letter said, ‘set a dangerous precedent’. ‘There must be absolute surety that doctors have no other motivation than the patient’s best interests when they make a diagnosis. A direct financial payment like this undermines this confidence, and with it the basis of trust implicit in the doctor-patient relationship.’ The letter also pointed out that ‘to be given a diagnosis of dementia is challenging when the diagnosis is correct, but to receive such a label incorrectly can have truly tragic consequences.’

Between 40 and 60 per cent of GP practices in England indicated that they would join the scheme – a lower proportion than most payment schemes. Many GPs went on the record to say they would donate any funds they received to local dementia services. Perhaps they wished to highlight the paradox that a diagnosis of dementia is only of use if it helps you get access to support services, but austerity measures in many local council areas have reduced these services substantially. A diagnosis can also be useful if it gets you a prescription for drugs to help you with your condition, but in the case of dementia there is no such drug. If the dementia is ‘moderate’, it is claimed that some medications can, in some cases, slow its progress by about six months – but they don’t reverse it, and after six months have ‘little or no effect’. They also have side effects: cramps, exhaustion and insomnia are among those commonly reported. Our letter to the BMJ made no assumptions about the reasons for the scheme – it may well have been started with good intentions – but others believe it was thought up because the government is in thrall to Big Pharma and, globally, dementia drugs are worth billions of dollars per year.

At the end of November, a month after it was announced, Simon Stevens said that the scheme would not be renewed after March. But the damage has been done and a line has been crossed. This debacle is just the latest example of a medical culture, promoted by successive governments over the last twenty years, that rewards over-diagnosis and the prescription of drugs over personalised, professional care. Clinical trials, often funded by drug companies, show the benefit of a particular medication in a select population, usually people under 75, who suffer from a single or perhaps two conditions. Those results are then extrapolated to very different populations – older, frailer, more likely to suffer side effects and with multiple complicating conditions – and guidelines issued urging prescriptions of higher-dose drugs to these broader populations. The dementia initiative was unacceptable because it was the most flagrantly immoral example yet seen of the introduction of financial bias into what should be the protected space of the consulting room.

It wasn’t always protected. In February 1948 Aneurin Bevan gave a speech to Parliament in which he deplored doctors’ resistance – organised by the BMA – to the establishment of a new National Health Service. Some doctors, Bevan said, talked as if their private practice was the glory of the profession. ‘What should be the glory of the profession,’ he said, ‘is that a doctor should be able to meet his patients with no financial anxiety.’ He wanted the issue of payment taken out of the consulting room, so that it wouldn’t taint the clinician’s decisions, or erode the patient’s trust. He urged the Conservative Party to help pass the act against the wishes of doctors’ representatives: ‘We ought to take pride in the fact that, despite our financial and economic anxieties, we are still able to do the most civilised thing in the world – put the welfare of the sick in front of every other consideration.’ It is a measure of the success of the NHS that it is doctors who are now defending Bevan’s vision, while the current minister for health would have us grasping after the money.

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Letters

Vol. 37 No. 6 · 19 March 2015

Gavin Francis supports GPs who don’t diagnose dementia because they think there’s no point (LRB, 5 March). It is outrageous that publicly funded professionals could withhold important information about my health. It’s all very well being professionally insulted by the government’s offer of fifty quid. The sooner someone sues a GP for failure to diagnose as early as possible, the better. Significant financial and emotional damage, and unnecessary disability can be avoided if you are told what’s wrong at the earliest opportunity and then take action to slow the progress of the disease. Recently, in London, I’ve seen figures for 20 per cent diagnosis rates in some practices against 75 per cent in Belfast. Francis says ‘presumably’ the government thought low diagnosis was evidence of poor care. If anything, it is evidence of no care at all. But that will be for the lawyers to prove.

June Andrews
University of Stirling

Gavin Francis writes: So it’s the fault of GPs, once again the lightning conductors for the nation’s health anxieties. I’m not insulted. What is outrageous is that this initiative specifically erodes patients’ trust in their doctors’ motives, and uses the consulting room to gather data rather than to offer help and support. So there are disparities between London and Belfast, well, go find out why London GPs are overwhelmed instead of sticking a bounty on the head of everyone with memory loss. Suing won’t help. We all want better care. Before June Andrews phones the lawyers I invite her to visit my practice so she can see the barriers I face in getting support for patients with dementia and the reasons diagnosis might be delayed. They are complicated, often historical and political, and they won’t be overcome by crude financial incentives or adopting a belligerent attitude to those of us trying to provide care.

Vol. 37 No. 9 · 7 May 2015

June Andrews writes of dementia that ‘the sooner someone sues a GP for failure to diagnose as early as possible, the better’ (Letters, 19 March). Screening is always a balance of benefit and harm. The UK National Screening Committee exists to determine where the balance lies between benefit and risk. This year, it has maintained its position that screening for dementia should not be offered. Why? False positives are rife. If the background rate of dementia for 65-year-olds is 6 per cent, screening would find four of the six (i.e. two would be given a false negative result) but 23 others would be told they have dementia when they do not. This isn’t just bad medicine, it is harmful medicine.

Further, Andrews promotes the use of litigation to drive earlier diagnosis. This creates several problems. When is it possible to diagnose dementia ‘earlier’? We know that imaging can pick up signals in the older brain which may or may not be abnormal. Most will never progress to a clear pattern of dementia. Would Andrews like each of these patients to be told that they ‘might’ have early signs of possible future dementia? Should doctors do this in order to prevent litigation against them? What about mild cognitive impairment (MCI)? This is not ‘dementia’, and neither is it clearly ‘early dementia’, given that while 5-10 per cent of people with MCI progress to dementia each year, 40-70 per cent actually improve. Would Andrews stipulate that all people with MCI be included under the dementia ‘net’, just in case?

Then there are people with memory problems. Would Andrews like me to tell my severely depressed patient, whose minor memory difficulties I am almost certain are related to their illness, that they ‘might’ have dementia? Will this prevent my being sued, even if my patient, distressed by this news, comes to harm through my desire to protect myself?

Wouldn’t it be far better to try and achieve ‘timely’ diagnosis? Making a diagnosis of dementia can be difficult, and even the experts we call on to assist us often find the diagnosis uncertain. Monitoring over time is a useful way of making the diagnosis clearer and more certain.

Margaret McCartney
Glasgow

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