Like any good employer, Ros Sloboda’s boss wanted to know what she had been through when she finally returned to work. He knew about appendicitis, and was familiar with the idea of an appendix bursting prior to surgery. But he had never heard of sepsis. This was something Sloboda’s surgeons recognised she had developed, yet seemed blithely unconcerned by, hastily discharging her after her operation to free up a bed. She had previously seen a good friend lose both lower legs and several fingers to the condition, and as she became progressively more unwell at home, she began to fear for her life. By the time her GP readmitted her to a different hospital, infection had spread to both lungs and she was very sick. Fortunately, aggressive intravenous antibiotic therapy and careful support to multiple failing organs had prevented her from becoming one of the tens of thousands of people to die annually from sepsis in the UK.
Sloboda’s boss was shocked by how close he had come to losing his loyal PA of 30 years. He was mystified as to why he’d never even come across the name of such a serious but common complication. He was also disturbed that it should have been so apparently underestimated by her original hospital team.
This was 2017. Something you should know about Sloboda’s boss: he is Michael Grade, a former controller of BBC One and executive chairman of ITV, and now a life peer. Through Hugh Pym, the BBC’s health editor, he tracked down the UK Sepsis Trust, a then fledgling organisation dedicated to tackling the condition. Both he and Sloboda became staunch supporters and remain so.
Grade’s public profile (he has kept the issue on the government’s agenda through questions in the House of Lords) may be exceptional, but in every other respect their story is entirely ordinary. That instinct to do something constructive, to right a wrong, underpins much altruistic activity taking place throughout the country. People running fundraising marathons, or wearing awareness-raising badges and T-shirts. Volunteers organising support groups for sufferers and families affected by just about any disease you can name.
Sepsis is a worthy cause. It is an aberrant reaction of the immune system, triggered by a wide range of infections, which once set in motion causes progressive multi-organ failure. Very young children and the elderly are most susceptible, but it can affect any age. When I learned about it as a trainee doctor 30-odd years ago (it was called septicaemia or septic shock then) the focus was on what was going wrong inside the body – not on how to identify it swiftly. Cases being missed at an early, more treatable stage are thought to contribute to the appallingly high fatality rate – some 30 per cent in 2017, when Sloboda was unwell.
It was this that inspired Ron Daniels, an intensive care consultant in Birmingham, to found the UK Sepsis Trust in 2012. Daniels had been interested in the field since 2004 and helped develop and disseminate the “Sepsis Six” – a series of immediate measures hospital doctors should take as soon as sepsis is suspected. But it had become apparent that professional guidelines could only achieve so much. What was also needed was public awareness, so that patients or family would seek help before the condition escalated.
The challenge lay in how to do this. The early symptoms of sepsis – high fever, rapid pulse, widespread muscle pain – are common to numerous unpleasant but self-limiting illnesses. Sloboda articulates the dilemma: “What if by raising awareness we make people absolutely paranoid? We don’t want everyone who’s got flu to think they’ve got sepsis.” Daniels consulted widely in developing the Trust’s public-facing campaign. The stance they settled on – encouraging unwell people simply to ask their GP, NHS 111 or A&E: “Could it be sepsis?” – was felt to strike the right balance, a way of prompting professionals to consider the diagnosis and trigger early management of suspected cases. Yet this careful approach struck some sepsis campaigners – people whose lives have been devastated by the condition – as frustratingly overcautious. As Sloboda explains, “Once the argument is on an emotional level the atmosphere becomes highly charged, febrile even. All people want to do, quite understandably, is to save a life.”
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Britain has a long tradition of third-sector health organisations. Mind, the leading mental health charity, was founded in 1946 (originally named the National Association for Mental Health). The British Heart Foundation was established in 1961 by a group of doctors concerned to advance research and treatment for the leading cause of death at that time, heart disease. The Alzheimer’s Society was co-founded in 1979 by Cora Phillips and Morella Kayman, both of whom had cared for husbands with dementia. Meningitis Now started life as two local support groups set up by bereaved families in the Cotswolds in the early 1980s.
Once a critical mass became established, the concept was there to inspire others. Health-related charities have proliferated exponentially. There are organisations focused on almost every significant illness, from Huntington’s disease to hepatitis C, multiple sclerosis to ME. Total numbers are difficult to pin down but run into the thousands; the Charity Commission lists more than 1,600 concerned with different types of cancer alone.
Common aims are to support affected individuals and families, fund and drive medical research, and influence policy and service provision. Raising public awareness has also long been a goal. Mind ran what was probably the first such campaign in 1971, seeking to counter the then prevalent ignorance and prejudice surrounding mental ill-health.
The first diagnosis-focused campaign came in 1993, with Meningitis Now launching its “symptom cards”, credit card-sized prompts that were widely distributed to parents of newborns and to university freshers (two vulnerable groups). I still remember the huge rise in consultations for febrile children that resulted at my surgery, all of whom had benign explanations for their high temperature, rash or listlessness. We were a university practice, though, and we did have one case of meningococcal meningitis in a student, whose boyfriend may have sought early help because of increased awareness. Back to Sloboda’s conundrum: waves of “worried well” versus the occasional dramatic intervention.
Diagnosis-focused campaigns are fast becoming a sine qua non for the sector, aided by the ease of reach afforded by the internet and social media. Adverts alerting people to the symptoms of conditions from inflammatory bowel disease to blood cancer are widely circulated, along with exhortations for anyone experiencing them to consult their GP. But for whatever symptom one considers – fatigue, diarrhoea, cough or whatever – the majority of people will have benign explanations.
The calculus for each individual charity seems straightforward: it is worth numerous patients getting checked in order to catch one unsuspected case. Yet collectively, this tsunami of awareness-raising is driving ever more demand in the NHS. According to the Office for National Statistics, more than a third of those surveyed in February said they had attempted to make an appointment with a GP in the past month. The more that surgeries, ambulance services, NHS 111 and A&E departments swell with the “worried well”, the more difficult it becomes for patients with significant illness to access care. This is delaying help for some of the minority who truly need it – ironically, the very issue that awareness-raising campaigns seek to address. And beyond this obvious problem, the factors that are turning Britain into a “sick society” are causing other, more direct harms.
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Matthew Hobbs, the research director of Prostate Cancer UK (PCUK), told me that his charity “gets it in the neck from both sides” over preventative screenings. Like the UK Sepsis Trust, PCUK has many supporters – some also prominent public figures – whose lives have been affected by prostate cancer, and who naturally want to see everything possible done to prevent others suffering similarly. It is a widely held (but simplistic) belief that detecting any tumour earlier must result in better outcomes. If women have established programmes to screen for breast and cervical cancer, the logic goes, there ought to be one for men, based on the PSA blood test used to help diagnose prostate cancer. There’s considerable pressure from PCUK members for the charity to campaign on this.
The other “side” that Hobbs alludes to is doctors like me, who argue that such an initiative would cause harm. The research evidence tells us that blanket PSA testing in healthy men doesn’t save lives and leads instead to an appreciable number (2 per cent) of people being diagnosed with, and often treated for, tumours that would never have gone on to cause problems – a phenomenon called overdiagnosis. Quite aside from the psychological impact of an unnecessary cancer diagnosis, treatment leaves some men permanently incontinent and impotent.
PCUK has tried to square this circle through a tool on its website that men can use to assess their “risk”. Although dressed up to look like a calculator, the “risk checker” follows two simple rules: any man over 50, or over 45 if black or mixed black ethnicity, or with a family history, will be told – alarmingly – that they are at “high risk”. Users can then access information as to the pros and cons of PSA testing.
Hobbs acknowledges that this “high risk” language probably needs changing, and the absence of an upper age limit is problematic (cancer is present in the prostates of 50 per cent of men over 70, but rarely causes significant disease). But he points out that the charity’s risk checker merely reflects the position taken by the Department of Health and Social Care, that any asymptomatic man should be able to undergo PSA testing should they wish, having been made aware of its potential for harm when deployed as a screening tool. And Hobbs’s motives are sincere. He believes that refinements such as MRI scanning and increasing confidence among urologists that they can identify indolent tumours (ones that can be safely monitored rather than subjected to aggressive treatment) has tipped the balance in favour of widespread PSA testing. He may be right, he may be wrong: at this point, it is simply a belief. A properly conducted clinical trial would settle the matter – something PCUK is planning – but this may take 20 years to arrive at a definitive verdict. (In part, ironically, this would be complicated by the increasing amount of ad hoc testing being driven by prompts like PCUK’s risk checker.)
In the absence of hard scientific evidence, Hobbs is looking to the UK National Screening Committee (UKNSC) – one of the few checks to ensure that NHS activity is well-founded – to adjudicate. Pressure from patient-interest groups, coming from a place of painful personal experience, is understandably strong, and it would be a hard-hearted person not to feel great sympathy. But the UKNSC has to take account of the full range of considerations, including the harms from overdiagnosis and the increased pressure on the NHS – the consultations, blood tests, referrals, scans, biopsies, surgery and radiotherapy. When it last examined PSA screening in November 2020, it came out unequivocally against.
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The health charity sector does a great amount of good. The degree of high-quality information and support to patients and families is invaluable both to those affected and the clinicians caring for them. Innumerable medical advances have been secured through research directed and funded by third-sector organisations.
But whether the demand they stoke in the NHS justifies the end results is far from a given. I regularly see patients anxious that their self-limiting viral illness might be sepsis. That might be worthwhile: according to Ron Daniels, mortality from sepsis has fallen from 30 per cent in 2015 to under 20 per cent today. But with the burgeoning fashion for diagnosis-focused campaigning, we have reached the point where we need a body, akin to the UKNSC, to authorise such activities. What is the actual problem any such campaign is intended to address? How important is it? Do the benefits justify any impact on demand? Such a body would need to be independent of NHS England. All the charities I spoke to had consulted with the body about their public campaigns and had received the go-ahead, but this speaks to a lack of joined-up thinking by our health service leadership.
Indeed, NHS England is contributing to the problem. Under political pressure to respond to the drop in cancer diagnoses caused by the pandemic, the service promoted PCUK’s risk checker as part of a joint February 2022 campaign to “Find the Missing 14,000”, the number of men thought not to have started treatment for prostate cancer as a result of the Covid pandemic. The widespread publicity led to a huge surge in visits to PCUK’s website, with more than a million people using the risk checker by November 2022; No one knows exactly how many subsequently made a GP appointment, though PCUK’s data suggest it will have been at least 270,000 and quite possibly higher. According to Amy Rylance, PCUK’s head of improving care, by November 2022 an additional 4,000 men had commenced treatment. Among them will have been patients with symptomatic disease, but there will also have been cases where unnecessary harm has been caused. The gushing announcements from NHS England leadership, trumpeting the success of the scheme, wilfully confuse two very different activities – diagnosing patients who have symptoms versus screening healthy men – and read as though none of the people in charge of our health service have heard of overdiagnosis and overtreatment.
Post-pandemic political pressure has led NHS England into even more hazy campaigning as part of its “Help Us Help You” initiative. The most egregious example encourages people, via social media and advertising, to see their GP simply if something doesn’t “feel right”, suggesting that this most nebulous of sensations could be a sign of cancer, and setting an expectation that “tests” will be required to rule it out. The very body responsible for running the NHS is contributing more than anyone to the unprecedented demand under which the service is currently buckling.
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The motivations of affected patients and families, and the charities to whose causes they rally, are unimpeachable, if narrow in focus. Far more double-edged is the involvement of the pharmaceutical industry. Virtually all major health charities receive drug company sponsorship, and many wouldn’t exist, or would conduct scaled-back work, without it. This has a community interest veneer: the corporation that profits from healthcare appears to be giving something back. Yet off-the-record conversations with health charity staff suggest that funding is often explicitly tied to activities that will generate increased drug sales.
In March the Danish pharmaceutical giant Novo Nordisk was suspended for two years from the Association of the British Pharmaceutical Industry (ABPI), following an investigation into its sponsorship of a weight-management course for healthcare professionals that promoted its weight-loss drug Saxenda. It has faced similar criticism over some £21m spent on what has been described as an “orchestrated PR campaign” to promote another of its weight-loss products, Wegovy. While Novo Nordisk has been singled out, it is representative of a wider issue in the industry.
Margaret McCartney – a Glasgow GP, writer and broadcaster – led a research group that looked at UK media coverage of screening for a heart rhythm disturbance called atrial fibrillation (AF). For some AF patients, anti-clotting drugs can reduce their chance of suffering a resultant stroke. However, many people with AF have no symptoms and are unaware that they have the condition. It would seem obvious that screening and anticoagulating patients found to have silent AF would prevent disability and death.
Only it doesn’t appear to. The UKNSC evaluated the evidence in 2014 and 2019 and on both occasions decided a programme wasn’t justified. There are three patterns of AF, and evidence is unclear whether those cases detected by screening – rather than those presenting as clinical disease – carry the same stroke risk. Anticoagulation also has substantial downsides, not just the risk of catastrophic haemorrhage, but of causing a different type of stroke. It’s conceivable that treating screening-detected AF in the same way as we treat AF identified in symptomatic patients may cause more harm than good.
But you wouldn’t know it from media coverage of the issue. McCartney’s group surveyed more than 200 UK articles about AF and found that 85 per cent promoted the idea of screening. Of the experts quoted, more than 90 per cent were in favour – and around 90 per cent of those had direct or indirect financial conflicts of interest. Additionally, among the trustees, medical advisers and spokespeople for the two leading health charities campaigning on the issue – including, according to the British Medical Journal, encouraging patients to put pressure on the UKNSC to try to get the screening decision overturned, and urging patients to visit their GP – a substantial majority received industry funding.
Cambridge University is leading a further study into AF screening, but concerted campaigning is rendering its eventual conclusions redundant. Around the country, numerous NHS organisations are conducting AF screening initiatives, contrary to the verdict of the UKNSC. McCartney’s research group found declarations of financial interest for 23 of them; 22 of those were in receipt of pharmaceutical industry funding.
Medicine is littered with examples of well-intentioned and seemingly beneficial interventions that resulted in harm. Here are just two. The cardiac muscle of heart attack patients dies because of a lack of oxygen, so for decades it was standard practice to administer high-flow oxygen to minimise damage. But when the practice was subjected to scrutiny it was found to confer no benefit – and some studies even suggested it worsened outcomes.
Similarly, high blood pressure is a risk factor for stroke, and both are more common with advancing age. Doctors used to lower blood pressure aggressively even in the over-80s to reduce the chance of stroke. Again, scientific evidence has subsequently shown that this approach causes more deaths in this age group. Medicine is a complex field in which benefits have always to be balanced against harms. Blindly promulgating activity in the absence of evidence is fraught with pitfalls, with real people suffering the consequences.
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The need to constrain the impact of commercial interests on NHS demand is only going to grow. The Spotify founder Daniel Ek is reported to be moving into the “preventative healthcare” market, with plans to launch a service offering “body scans”, initially to people with heart and skin concerns. Test kits for innumerable biological markers are available on the internet, and increasingly in supermarkets and chemists; a plethora of companies offer blood tests with no clinical context. Around one in every 17 such investigations will yield results outside the “normal range”, the overwhelming majority of which will be clinically insignificant. Existing private “health screening” services subject people to tests for which there is no evidence of benefit, such as exercise ECGs or whole-body MRI scans, up to a quarter of which will generate incidental findings of uncertain significance. Having banked the money, those selling such services wash their hands of responsibility, sending bemused customers into the NHS to try to find out what, if anything, their results might mean.
The advent of “liquid biopsies” – blood tests that pick up minute quantities of markers from cancer cells – will likely hugely amplify our dilemmas with overdiagnosis. These tests will soon become widely commercially available, and their use is likely to outpace the methodical and time-consuming studies being conducted to evaluate whether they actually confer benefit – or cause harm.
We need a regulatory framework to license the activity of companies hawking such investigations. At a minimum, they should demonstrate that they are supplying potential customers with impartial information about what their tests can and cannot do – instead of, as now, implying that they are an unalloyed good. And they must price their products so that they themselves are resourced to follow up and contextualise results, rather than dumping this work elsewhere.
There are light and dark sides to the cultural forces heightening our health anxieties: altruistic good intent, naked commercial gain and politicians’ craving for simple “good news” headlines. But the resultant pressures on the health service, to say nothing of the harms suffered by many, have for too long been a hidden cost. If the NHS is to survive, they must be confronted and firmly grasped.
Phil Whitaker is the New Statesman’s medical editor. His new book, “What is a Doctor?”, will be published by Canongate in July
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This article appears in the 14 Jun 2023 issue of the New Statesman, Over and Out