What is quality of life?

The challenge of deciding how we should decide who deserves treatment from an NHS of finite resource

It cannot be an easy or pleasant job to inform terminally ill cancer patients they will be denied access to effective drugs that have the capacity to extend their lives by months or years.

Moreover, in a society with a publicly funded health service, it is particularly difficult to justify the denial of effective treatment to patients who have paid their taxes, over their working lifetimes, in expectation that they will have access to high quality medical treatment if they fall ill.

Just such an unpleasant, difficult and controversial task has just been carried out by Professor Peter Littlejohns, the clinical director of the National Institute for Health and Clinical Excellence (NICE).

Littlejohns has released a preliminary ruling, denying access to the drugs Sutent, Avastin, Nexavar and Torisel to patients with advanced metastatic kidney cancer. These patients will, on average, die months earlier than those with the same condition in other countries in Europe where such drugs are available.

How can NICE justify its refusal to allow these patients a few extra months of life? Its methodology looks at the cost-effectiveness of medical treatments in terms of cost per extra 'quality-adjusted life year' (QALY).

If a drug or other treatment delivers an extra QALY at roughly £20,000 or less, then the treatment is judged to be cost-effective, and hence recommended. If the sums come out less favourably, then NICE decides against making that drug or treatment available on the NHS.

Although the system has some room for other considerations and can be responsive to special cases, this procedure strikes many as frighteningly cold-hearted and mechanistic. In matters of life and death, these sorts of accountants' calculations can seem cruel and out-of-place.

But what could the alternatives be? The alternative of leaving decisions to the judgement of individual hospital trusts or medical teams has little to recommend it. Firstly, it is difficult to justify a policy that depends on subjective individual judgements. Unless there are explicit public guidelines, like those followed by NICE, it is impossible to see how decisions over health-rationing could possibly be justified to those affected.

Secondly, if such decisions are made locally rather than nationally, we are thrown into the familiar problems of the 'post-code lottery'. A patient in Nottingham may find herself denied treatment that is provided to someone in Newcastle. Allowing matters of life and death to depend on the good or bad luck of geographical location seems like the very opposite of finding justifiable policies.

Another alternative might simply be to fund all medically effective treatments. But this aim would be impossible to realise. One could, after all, always produce some small marginal gain in expected QALYs with a limitlessly expandable healthcare budget.

It may be that, even with the massive increases in the NHS budget over the last eleven years of Labour government, we still do not spend enough on health care. In the UK, we spend somewhere between nine to 10 per cent of our GDP, as against other advanced countries (for example, France and
Germany) which spend nearer to 11 per cent. (Whereas before 1997, Britain spent under seven per cent of its GDP on healthcare.) But no matter how large a proportion of GDP we spend, we would still face budgetary constraints.

Hard choices have to be made: funding certain treatments will always mean not funding others.

Perhaps NICE has found the least objectionable way of performing an unenviable task. But there are potential problems with its QALY-based methodology. First of all, there is the very idea of 'quality-adjusting' a year of life. The intuitive idea is that a year of pain-free, high-functioning life is better than a year of painful, highly limited living. This seems plausible enough, but it is notoriously difficult to make judgements of 'quality of life' in any kind of fine-grained way. Some patients may consider another year of life to be of enormous value, no matter what its pains or indignities.

The calculus of QALYs can also lead to some strange decisions. For example, giving an extra 10 years of healthy life to a 15 year old would be weighed identically to giving 10 years of life to a 65 year old. But, looking beyond QALYs, most people would think it right to favour the younger patient over the older. The QALY approach had no room for these ideas of a 'fair innings'.

It can also find no room for favouring those already suffering from other forms of disadvantage over those who are otherwise advantaged.

Indeed, the QALY-approach will favour a treatment that gives X additional years of life to a 30 year-old able-bodied person, rather than X additional years to a 30 year-old disabled person, which seems quite unjust. A more just system might also give more emphasis to the diseases of the poor over the diseases of the wealthy.

We should also bear in mind that the costs of various drug treatments are not entirely fixed. Instead, those costs often depend on the price levels that profit-maximising pharmaceutical companies think they can get away with. Many pharmaceutical companies spend vast sums on the questionable practice of direct marketing to doctors, as well as funding partisan or self-serving forms of research, all of which push up the prices paid by the NHS.

Bob Essner, the CEO of Wyeth (which makes Torisel) took home $24.1 million in pay in 2007, while Jeff Kindler of Pfizer (makers of Sutent) made $12.6 million. The cost per-QALY of these drugs could no doubt be reduced if they didn't have to generate the obscene salaries of corporate fat cats like these.

NICE's QALY-based approach is a useful tool, creating the possibility of publicly justifiable decisions over healthcare rationing. But we should not lose sight of the broader regulatory context when considering how the NHS should apportion its spending on drugs. There is little doubt that a more responsible and better regulated pharmaceutical industry would mean NICE had fewer tough choices to make.

Perhaps the most interesting aspect of a QALY-based approach, though, is what it can tell us about broader issues of government policy and health outcomes. For, it turns out, what really makes a difference to the number of QALYs that individuals can look forward to depends more on factors like diet, exercise and early detection of disease, rather than the availability of expensive pharmaceuticals.

Following NICE's procedures to their full conclusion would suggest a massive move towards a pro-active rather than a reactive NHS, with more resources devoted to screening and public health measures, rather than to the treatment of those who are already nearing the end of their lives.

Moreover, as public health researchers like Sir Michael Marmot, Richard Wilkinson and Ichiro Kawachi have discovered, social inequalities have a massive impact on life-expectancy (and hence on QALYs).

More egalitarian societies, like Sweden, Denmark and Iceland, have higher average life-expectancies, even when controlling for all other factors, than do less just societies like the UK.

Indeed, as inequalities go on rising in the US, average life-expectancy is actually falling there for the very first time.

So, if NICE's approach has much to recommend it, it leads us to the conclusion that a concern with the health of our society leads us beyond thinking only about the NHS, but encompasses much broader policies for securing social justice.

Martin O’Neill is a political philosopher, based at the Centre for Political Theory in the Department of Politics at the University of Manchester. He has previously taught at Cambridge and Harvard, and is writing a book on Corporations and Social Justice.
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Losing Momentum: how Jeremy Corbyn’s support group ran out of steam

Tom Watson says it is destroying Labour. Its supporters say it is a vital force for change. Our correspondent spent six months following the movement, and asks: what is the truth about Momentum?

1. The Bus

 The bus to the Momentum conference in Liverpool leaves at seven on a Sunday morning in late September from Euston Station, and the whole journey feels like a parody of a neoliberal play about the failings of socialism. We depart an hour late because activists have overslept and we cannot go without them. As we wait we discuss whether Jeremy Corbyn will be re-elected leader of the Labour Party this very day. One man says not; a young, jolly girl with blonde hair cries: “Don’t say that on Jezmas!” She is joking, at least about “Jezmas”.

A man walks up. “Trots?” he says, calmly. He is joking, too; and I wonder if he says it because the idea of Momentum is more exciting to outsiders than the reality, and he knows it; there is an awful pleasure in being misunderstood. Momentum was formed in late 2015 to build on Corbyn’s initial victory in the Labour leadership election, and it is perceived as a ragtag army of placard-waving Trots, newly engaged clicktivists and Corbyn fanatics.

We leave, and learn on the M1 that, in some terrible metaphor, the coach is broken and cannot drive at more than 20mph. So we wait for another coach at a service station slightly beyond Luton. “Sabotage,” says one man. He is joking, too. We get off; another man offers me his vegan bread and we discuss Karl Marx.

A new coach arrives and I listen to the others discuss Jeremy Corbyn’s problems. No one talks about his polling, because that is depressing and unnecessary for their purpose – which, here, is dreaming. They talk about Corbyn as addicts talk about a drug. Nothing can touch him, and nothing is ever his fault. “There are problems with the press office,” says one. “Perhaps he needs better PAs?” says another.

One man thinks there will be a non-specific revolution: “I hope it won’t be violent,” he frets. “There have been violent revolutions in the past.” “I stuck it out during Blair and it was worth it,” says another. “They’ve had their go.” “We don’t need them [the Blairites],” says a third. “If new members come in, it will sort itself out,” says a fourth.

I have heard this before. Momentum supporters have told me that Labour does not need floating voters, who are somehow tainted because they dare to float. This seems to me a kind of madness. I do not know how the Labour Party will win a general election in a parliamentary democracy without floating voters; and I don’t think these people do, either.

But this is a coach of believers. Say you are not sure that Corbyn can win a general election and they scowl at you. That you are in total agreement with them is assumed, because this is the solidarity bus; and if you are in total agreement with them they are the sweetest people in the world.

That is why I do not tell them that I am a journalist. I am afraid to, and this fear baffles me. I have gone everywhere as a journalist but with these, my fellow-travellers on the left, I am scared to say it; and that, too, frightens me. MSM, they might call me – mainstream media. What it really means is: collaborator.

The man beside me has been ill. He talks sweetly about the potential renewal of society under Corbyn’s Labour as a metaphor for his own recovery, and this moves him; he has not been involved in politics until now. I like this man very much, until I mention the Jewish Labour MP Luciana Berger and the anti-Semitism she has suffered from Corbyn supporters and others; and he says, simply, that she has been employed by the state of Israel. He says nothing else about her, as if there were nothing else to say.

We listen to the results of the leadership election on the radio; we should be in Liverpool at the Black-E community centre to celebrate, but the solidarity bus is late. Corbyn thanks his supporters. “You’re welcome, Jeremy,” says a woman in the front row, as if he were on the coach. She nods emphatically, and repeats it to the man who isn’t there: “You’re welcome, Jeremy.”

In Liverpool, some of the passengers sleep on the floor at a community centre. The venue has been hired for that purpose: this is Momentum’s commitment to opening up politics to the non-connected, the previously non-engaged, and the outsiders who will attend their conference in a deconsecrated church, even as the official Labour conference convenes a mile away. But never mind that: this is the one that matters, and it is called The World Transformed.

 

2. The Conference

Later that day, outside the Black-E, a man comes up to me. Are you happy, he asks, which is a normal question here. These are, at least partly, the politics of feelings: we must do feelings, because the Tories, apparently, don’t. I say I’m worried about marginal seats, specifically that Jeremy – he is always Jeremy, the use of his Christian name is a symbol of his goodness, his accessibility and his singularity – cannot win them.

“The polls aren’t his fault,” the man says, “it’s [Labour] people briefing the Tories that he is unelectable.” I do not think it’s that simple but it’s easy to feel like an idiot – or a monster – here, where there is such conviction. As if there is something that only you, the unconvinced, have missed: that Jeremy, given the right light, hat or PA, could lead a socialist revolution in a country where 13 million people watched Downton Abbey.

But the man does say something interesting which I hope is true. “This is not about Jeremy, not really,” he says. “It is about what he represents.” He means Momentum can survive without him.

There is a square hall with trade union banners and a shop that sells Poems for Jeremy Corbyn, as well as a Corbyn-themed colouring book. When I am finally outed as a journalist, and made to wear a vast red badge that says PRESS, I attempt to buy one. “That’s all journalists are interested in,” the proprietor says angrily. That is one of our moral stains, apparently: a disproportionate (and sinister) interest in colouring books.

I go to the Black Lives Matter event. A woman talks about the experience of black students in universities and the impact of austerity on the black community. Another woman tells us that her five-year-old son wishes he was white; we listen while she cries. I go to the feminism meeting and change my mind about the legalisation of prostitution after a woman’s testimony about reporting an assault, and then being assaulted again by a police officer because of her legal status. Then I hear a former miner tell a room how the police nearly killed him on a picket line, and then arrested him.

This, to me, a veteran of party conferences, is extraordinary, although it shouldn’t be, and the fact that I am surprised is shameful. Momentum is full of the kinds of ­people you never see at political events: that is, the people politics is for. Women, members of minority communities (but not Zionist Jews, naturally), the disabled: all are treated with exaggerated courtesy, as if the Black-E had established a mirror world of its choosing, where everything outside is inverted.

When Corbyn arrives he does not orate: he ruminates. “We are not going to cascade poverty from generation to generation,” he says. “We are here to transform society and the world.” I applaud his sentiment; I share it. I just wish I could believe he can deliver it outside, in the other world. So I veer ­between hope and fury; between the certainty that they will achieve nothing but an eternal Conservative government, and the ever-nagging truth that makes me stay: what else is there?

There is a rally on Monday night. Momentum members discuss the “purges” of socialist and communist-leaning members from Labour for comments they made on social media, and whether détente is possible. A nurse asks: “How do we know that ‘wipe the slate clean’ means the same for us as it does for them? How on Earth can we trust the likes of Hilary Benn who dresses himself up in the rhetoric of socialism to justify bombing Syria? The plotters who took the olive branch offered by Jeremy to stab him in the back with another chicken coup?” I am not sure where she is going with that gag, or if it is even a gag.

The next man to speak had been at the Labour party conference earlier in the day; he saw Len McCluskey, John McDonnell and Clive Lewis on the platform. “Don’t be pessimistic, folks,” he cries. “On the floor of conference today we owned the party. Progress [the centrist Labour pressure group] are the weirdos now. We own the party!”

A man from Hammersmith and Fulham Momentum is next. “The national committee of Momentum was not elected by conference,” he says. “It’s a committee meeting knocked up behind closed doors by leading people on the left, including our two heroes.” He means Jeremy Corbyn and John McDonnell. This is explicit heresy, and the chair interrupts him: “Stan, Stan . . .” “I’m winding up!” he says. “We need a central committee of Momentum elected by conference,” he says, and sits down.

The following day Corbyn speaks in the hall in front of golden balloons that spell out S-H-E-E-P. It may be another gag, but who can tell, from his face? This is his commitment to not doing politics the recognisable way. He is the man who walks by himself, towards balloons that say S-H-E-E-P. (They are advertising the band that will follow him. They are called, and dressed as, sheep.) The nobility of it, you could say. Or the idiocy. He mocks the mockers of Momentum: is it, he was asked by the mainstream media, full of extremists and entryists? “I’m not controlling any of it,” he says calmly, and in this calmness is all the Twitter-borne aggression that people complain of when they talk about Momentum, for he enables it with his self-satisfied smile. “It’s not my way to try and control the way people do things. I want people to come together.” He laughs, because no one can touch him, and nothing is ever his fault.

I meet many principled people in Liverpool whose testimony convinces me, and I didn’t need convincing, that austerity is a national disaster. I meet only one person who thinks that Momentum should take over the Labour Party. The maddest suggestion I hear is that all media should be state-controlled so that they won’t be rude about a future Corbyn government and any tribute colouring books.

 

3. The HQ

Momentum HQ is in the TSSA transport and travel union building by Euston Station in London. I meet Jon Lansman, Tony Benn’s former fixer and the founder of Momentum, in a basement room in October. Lansman, who read economics at Cambridge, lived on the fringes of Labour for 30 years before volunteering for Corbyn’s campaign for the leadership.

The terms are these: I can ask whatever I want, but afterwards James Schneider, the 29-year-old national organiser (who has since left to work for Corbyn’s press team), will decide what I can and cannot print. ­Momentum HQ wants control of the message; with all the talk of entryism and infighting reported in the mainstream media, the movement needs it.

There is a civil war between Jon Lansman and the Alliance for Workers’ Liberty (AWL) and other far-left factions, which, I am told, “wish to organise in an outdated manner out of step with the majority of Momentum members”. Some of the Momentum leadership believe that the AWL and its allies want to use Momentum to found a new party to the left of Labour. Jill Mountford, then a member of Momentum’s steering committee, has been expelled from Labour for being a member of the AWL. It screams across the blogs and on Facebook; more parody. We don’t talk about that – Schneider calls it “Kremlinology”. It is a problem, yes, but it is not insurmountable. We talk about the future, and the past.

So, Lansman. I look at him. The right considers him an evil Bennite wizard to be feared and mocked; the far left, a Stalinist, which seems unfair. It must be exhausting. I see a tired, middle-aged man attending perhaps his fifteenth meeting in a day. His hair is unruly. He wears a T-shirt.

The last Labour government, he says, did one thing and said another: “Wanting a liberal immigration policy while talking tough about refugees and migrants. Having a strong welfare policy and generous tax credits while talking about ‘strivers’ and ‘scroungers’ unfortunately shifted opinion the wrong way.”

It also alienated the party membership: “Their approach was based on ensuring that everyone was on-message with high levels of control.” It was an “authoritarian structure even in the PLP [Parliamentary Labour Party]. Even in the cabinet. It killed off the enthusiasm of the membership. They never published the figures in 2009 because it dropped below 100,000. We’ve now got 600,000.” (The membership has since dropped to roughly 528,000.)

And the strategy? “If you have hundreds of thousands of people having millions of conversations with people in communities and workplaces you can change opinion,” he says. “That’s the great advantage of ­having a mass movement. And if we can change the Labour Party’s attitude to its members and see them as a resource – not a threat or inconvenience.”

That, then, is the strategy: street by street and house by house. “We can’t win on the back of only the poorest and only the most disadvantaged,” he says. “We have to win the votes of skilled workers and plenty of middle-class people, too – but they are all suffering from some aspects of Tory misrule.”

I ask about polling because, at the time, a Times/YouGov poll has Labour on 27 per cent to the Tories’ 41 per cent. He doesn’t mind. “It was,” he says, “always going to be a very hard battle to win the next election. I think everyone across the party will privately admit that.” He doesn’t think that if Yvette Cooper or Andy Burnham were leader they would be polling any better.

Upstairs the office is full of activists. They are young, rational and convincing (although, after the Copeland by-election on 23 February, I will wonder if they are only really convincing themselves). They talk about their membership of 20,000, and 150 local groups, and 600,000 Labour Party members, and the breadth of age and background of the volunteers – from teenagers to people in their eighties. One of them – Ray Madron, 84 – paints his hatred of Tony Blair like a portrait in the air. He has a ­marvellously posh voice. Most of all, they talk about the wounds of austerity. Where, they want to know, is the anger? They are searching for it.

Emma Rees, a national organiser, speaks in the calm, precise tones of the schoolteacher she once was. “A lot of people are sick and tired of the status quo, of politics as usual, and I think trying to do things differently is hard because there isn’t a road map and it’s not clear exactly what you’re supposed to do,” she says. She adds: “It is a coalition of different sorts of people and holding all those people together can sometimes be a challenge.”

Is she alluding to entryism? One activist, who asks not to be named, says: “I don’t want to insult anyone, but if you rounded up all the members of the Socialist Workers Party [SWP] and the Socialist Party and any other ultra-left sect, you could probably fit them in one room. Momentum has 20,000 members.”

The SWP were outside at The World Transformed in Liverpool, I say, like an ambivalent picket line. “Well,” James Schneider says pointedly, “they were outside.”

Momentum, Emma Rees says, “is seeking to help the Labour Party become that transformative party that will get into government but doesn’t fall back on that tried and failed way of winning elections”.

They tell me this repeatedly, and it is true: no one knows what will work. “The people who criticised us don’t have any route to electability, either,” says Joe Todd, who organises events for Momentum. He is a tall, bespectacled man with a kindly, open face.

“They lost two elections before Jeremy Corbyn. It’s obvious we need to do something differently,” he says. “Politics feels distant for most people: it doesn’t seem to offer any hope for real change.

“The left has been timid and negative. More and more people are talking about how we can transform society, and how these transformations link to people’s everyday experience. Build a movement like that,” Todd says, and his eyes swell, “and all the old rules of politics – the centre ground, swing constituencies to a certain extent – are blown out of the water.”

Momentum sends me, with a young volunteer as chaperone, to a rally in Chester in October to watch activists try to muster support for local hospitals. They set up a stall in the centre of the shopping district, with its mad dissonance of coffee shops and medieval houses. From what I can see, people – yet far too few people – listen politely to the speeches about austerity and sign up for more information; but I can hear the hum of internal dissent when an activist, who asks not to be named, tells me he will work for the local Labour MP to be deselected. (The official Momentum line on deselection is, quite rightly, that it is a matter for local parties.)

We will not know what matters – is it effective? – until the general election, because no one knows what will work.

 

4. The Fallout

Now comes the result of the by-election in Copeland in the north-west of England, and the first time since 1982 that a ruling government has taken a seat from the opposition in a by-election. Momentum canvassed enthusiastically (they sent 85 carloads of activists to the constituency) but they failed, and pronounce themselves “devastated”. The whispers – this time of a “soft” coup against Corbyn – begin again.

Rees describes calls for Jeremy Corbyn to resign as “misguided. Labour’s decline long pre-dates Corbyn’s leadership.”

This produces a furious response from Luke Akehurst, a former London Labour ­councillor in Hackney, on labourlist.org. He insists that Labour’s decline has accelerated under Corbyn; that even though Rees says that “Labour has been haemorrhaging votes in election after election in Copeland since 1997”, the majority increased in 2005 and the number of votes rose in 2010, despite an adverse boundary change. “This,” he writes, “was a seat where the Labour vote was remarkably stable at between 16,750 and 19,699 in every general election between 2001 and 2015, then fell off a cliff to 11,601, a third of it going AWOL, last Thursday.”

And he adds that “‘85 carloads of Mom­entum activists’ going to Copeland is just increasing the party’s ability to record whose votes it has lost”.

But still they plan, and believe, even if no one knows what will work; surely there is some antidote to Mayism, if they search every street in the UK? Momentum’s national conference, which was repeatedly postponed, is now definitively scheduled for 25 March. Stan who complained about a democratic deficit within Momentum at The World Transformed got his way. So did Lansman. In January the steering committee voted to dissolve Momentum’s structures and introduce a constitution, after consulting the membership. A new national co-ordinating group has been elected, and met for the first time on 11 March – although, inevitably, a group called Momentum Grassroots held a rival meeting that very day.

I go to the Euston offices for a final briefing. There, two young women – Sophie and Georgie, and that will make those who think in parodies laugh – tell me that, in future, only members of the Labour Party will be allowed to join Momentum, and existing members must join Labour by 1 July. Those expelled from Labour “may be deemed to have resigned from Momentum after 1 July” – but they will have a right to a hearing.

More details of the plan are exposed when, a week later, a recording of Jon Lansman’s speech to a Momentum meeting in Richmond on 1 March is leaked to the Observer. Lansman told the Richmond branch that Momentum members must hold positions within the Labour Party to ensure that Corbyn’s successor – they are now talking about a successor – is to their liking. He also said that, should Len McCluskey be re-elected as general secretary of Unite, the union would formally affiliate to Momentum.

Tom Watson, the deputy leader of the party, was furious when he found out, calling it “a private agreement to fund a political faction that is apparently planning to take control of the Labour Party, as well as organise in the GMB and Unison”.

There was then, I am told, “a short but stormy discussion at the away day at Unison” on Monday 20 March, where the inner circle of John McDonnell, Diane Abbott and Emily Thornberry “laid into” Watson, but Shami Chakrabarti made the peace; I would have liked to see that. Watson then released a bland joint statement with Corbyn which mentioned “a robust and constructive discussion about the challenges and opportunities ahead”.

Jon Lansman, of course, is more interesting. “This is a non-story,” he tells me. “Momentum is encouraging members to get active in the party, to support socialist policies and rule changes that would make Labour a more grass-roots and democratic party, and to campaign for Labour victories. There is nothing scandalous and sinister about that.” On the Labour right, Progress, he notes, does exactly the same thing. “Half a million members could be the key to our success,” he says. “They can take our message to millions. But they want to shape policy, too. I wouldn’t call giving them a greater say ‘taking over the party’” – and this is surely unanswerable – “it’s theirs to start with.”

Correction: This article originally named Luke Akehurst as a Labour councillor. Akehurst stood down in 2014.

This article first appeared in the 23 March 2017 issue of the New Statesman, Trump's permanent revolution