Aspiration in the Cancer Strategy, desperation on the front line
This piece first appeared on Macmillan Cancer Support’s ‘Evidence and Influence’ blog
The NHS Five Year Forward View (5YFV) – the ‘Stevens plan’ for the future of the NHS – is already a year old. What has the NHS achieved for people affected by cancer since its publication?
On the one hand, we were pleased to see that the 5YFV included a section on cancer, and were proud to be part of the independent taskforce behind a full Cancer Strategy for England, published in July. The whole cancer community came together to agree on an ambitious plan for world class cancer care which, crucially, acknowledges that the job of the NHS isn’t just to treat the disease but also to enable people to live healthy, fulfilling and productive lives after treatment. The report provides a compelling blueprint for change.
However, cancer services have faced an unprecedented struggle over the past year.
Cancer waiting time targets have now been missed for six quarters in a row with no sign of improvement in the near future. The official line from the Department of Health is that this is due to an unexpected increase in the number of people being referred by GPs for tests – but as we explained in March, the trend in referrals ought to have been fairly predictable. Perhaps, as the King’s Fund has suggested, the NHS simply faces an ‘impossible task’ given current constraints on spending and rising demand.
Whatever the cause, the result of this crisis is that people with cancer are having to wait too long for access to treatment and their lives are being put at risk. And across the country, we know that NHS staff are under more pressure than ever, struggling to find the time they need to meet rising demands and deliver the best patient experience.
Time is clearly running out: by 2020, there will be half a million more people living with a cancer diagnosis in England than in 2015, and the Five Year Forward View is already the Four Year Forward View. The strategies and solutions to support this growing population and avoid further crises have been agreed – what we need now is action.
Macmillan’s priorities are clear. To solve the problem of fragmented responsibility and accountability for cancer care since the Health & Social Care Act was introduced, we need to set up Cancer Alliances. To make sure the NHS delivers what matters most to patients, we need to design new quality of life and patient experience metrics, start collecting the data and hold the system to account for its performance. To make sure the NHS has a cancer workforce fit for the challenges of today as well as the future, we need an urgent strategic review. And to ensure tailored, long-term support for the two million people living with a cancer diagnosis in England – half of whom may live more than 10 years after their diagnosis – we need a national Living With and Beyond Cancer programme.
If the NHS can deliver for cancer, it will position itself well to deliver for everything else. The same themes set out in the Five Year Forward View are also at the heart of the Cancer Strategy – whole-person care, a sustainable workforce model, taking early action to avoid costly care in the future, self-management – and as a rare area of political convergence, it should be possible to gather momentum behind improving cancer care as an early priority. Once these approaches have been implemented and evaluated, they can then be rolled out to release further efficiencies and join up long-term condition management.
If the NHS is to achieve this, and close the gap between the aspiration in our strategies and the desperation on the front line, the recommendations in the Strategy must now be fully funded. Ahead of George Osborne’s Comprehensive Spending Review next month, we are watching very carefully which parts of the Cancer Strategy have gained political and financial backing so far and which have not.
We welcomed Jeremy Hunt’s recent commitments to speed up diagnosis, ensure everyone gets access to a Recovery Package by 2020 and introduce a Quality of Life measure for people with cancer. But we need the government and the NHS to commit publicly – and financially – to initiatives such as the workforce review, Living With and Beyond Cancer programme, Cancer Alliances and accountability for improving patient experience that we know are so vital to improving England’s cancer care services.
We will only be able to say the government’s manifesto commitment to delivering the cancer strategy has been met when these cornerstone initiatives have been fully funded. And in order to deliver world class cancer care in the future, front line services must also be protected and properly funded today. The Department of Health’s settlement in the forthcoming Spending Review must be sufficient to tackle the increasing challenge that cancer care poses. A ‘technical appendix’ of the Five Year Forward View estimated that expenditure on cancer services will need to grow by about 9% a year, reaching £13 billion by 2020/21. The Cancer Strategy recommendations will help place NHS finances on a firmer footing – but its vision can only be realised if recent declines in performance are reversed and existing targets met through investment in the services people need today.
There is much left to do, then, in the remaining years of the 5YFV – and this parliament – to ensure that the 2.5 million people who will be living with a cancer diagnosis in England by 2020 get the best possible care and support. As NHS England’s strategy director has said, doing is harder than writing. We will continue to influence government and policy makers to make sure the 5YFV and the Cancer Strategy result in real improvements.
The NHS’s ‘protected’ status in the Budget belies the crisis on the horizon
This piece first appeared on openDemocracy
You could be forgiven for thinking the NHS has done well out of the Budget. While spending on unprotected government departments will have fallen by about a third between 2010 and 2020, the NHS has managed to secure an ‘extra’ £8 billion a year, thanks to some pre-election politicking from Simon Stevens, head of NHS England.
In reality, the next five years for the NHS in England look less and less rosy, the closer you look. Stevens’ own financial predictions outline the size of the problem - if demand for healthcare continues to grow at the same pace, there will be a £30 billion shortfall by 2020. Osborne has committed to closing just over a quarter of that funding gap – but it is unclear when and how this £8 billion will be phased in, and crucially, where exactly the money will come from.
More concerning still is the remaining £22 billion. By 2020, the English NHS will be running up an annual deficit nearly five times that of the Greek government, even with Osborne’s unfunded extra money.
The cracks are already beginning to show. The UK lags behind its peers on a range of health outcomes, including heart attack mortality, stroke deaths, and suicides among inpatients with mental disorders. Health spending as a proportion of national income is among the lowest of the advanced economies. As the BBC’s health editor Hugh Pym put it, ‘if we are not spending as much as the others, perhaps it’s not surprising that many of the results are mediocre’.
So what to do? Can the funding gap be closed while improving care quality and keeping the government’s promise not to raise taxes? This is where Stevens, for all his nimble manoeuvering before the election, may prove to have come unstuck. As part of the deal to secure the fabled £8 billion, NHS England committed to make £22 billion of efficiency savings, chiefly by introducing redesigned ‘models of care’. Jeremy Hunt considers this the NHS’s ‘side of the bargain’.
The deal is looking increasingly Faustian. NHS finance directors forecast a deficit in two-thirds of trusts this year. In the past, deficits were run only in a handful of known basketcase trusts. Today, even the great and the good of the health world expect to end the year in the red. Following the Department of Health’s bailout of England’s hospitals to the tune of £874m last year, 2015/16’s deficit looks likely to top £2 billion in acute hospital care alone. If there were easy savings to be made, this would not be happening.
In a further twist reminiscent of the Greek economic crisis, bailouts from the Department of Health are expected to be converted into loans, repayable with interest. Having failed to close the fiscal deficit by 2015 as originally promised, the government is transferring the problem from the Treasury to the nation’s hospitals, stashing its secrets under the NHS’s bed. Instructed by the Labour government to become financially ‘independent’ Foundation Trusts, and in the absence of a statutory duty upon the Secretary of State to provide NHS services, many hospitals’ boards now bear sole responsibility for the blackholes in their balance sheets.
To commit the NHS to an unprecedented period of efficiency savings against this backdrop is risky. To have also shut the door on two of the areas where a glimmer of hope may have been visible is wilfully irresponsible.
Both social care and public health are now the responsibility of local authorities, whose budgets have been cut by nearly a quarter in real terms over the past five years. With appropriate funding, social care could help support frail elderly patients in the community – easing the strain on the NHS – but instead, 360,000 fewer older people now receive social care services than five years ago.
Meanwhile ‘ring-fenced’ public health budgets to pay for things like immunisation and screening are being raided and funneled into services only tangentially related to health, in an attempt to plug holes in council finances. A BMJ investigation found that just 45% of public health professionals believe money is being spent appropriately. And now that public health no longer counts as an area of protected spending, the government is consulting on a further £200m cut.
In the absence of investment in prevention and social care, the scramble to make savings will be characterised by the usual cast of health policy zombies (ideas that are regularly killed off but somehow still rise from the dead and eat into otherwise sensible people’s brains) and unicorns (breathtaking but yet to be spotted in the wild).
Integrated care is the NHS’s favourite unicorn policy. Eliminating the structural gap between health and social care will release savings and improve care, we are told. But real life sightings are few and far between: evaluations of integrated care pilots have found they take many years to implement and even then are rarely successful. As anyone who has lived through a merger will know, improvements aren’t achieved through structural change alone, and integrated care doesn’t address the core problem of mixing a comprehensive health service free at the point of use with a broken social care system of means-testing and costly care bills.
User charges and co-payments are chief among the zombies, pushed vociferously by right-wing think tank Reform - who’ve provided Cameron with his key health advisor. In England we are most familiar with prescription charges, despite international evidence that free prescriptions ultimately save money by reducing preventable ill health. Jeremy Hunt’s latest initiative involves rather conveniently placing price tags on prescriptions costing over £20. Expect proposals for further user charges to rise from the dead again when integrating care fails to cut costs.
Put both of these together, along with the introduction of personal health budgets (already underway, and being rolled out to millions of older and sicker people by 2018), and you get a nightmare scenario: rising and expanding user charges; pressure on patients to ration their own care or pay to top it up; and a worst-of-both-worlds mash-up of funding models. Add devolved, council-run healthcare budgets into the mix, as is happening in Manchester, and the NHS will be gone in all but name – no longer a national service but a fragmented mess left to councils and patients to clear up.
It is no surprise then that the plan to find £22 billion in savings is rightly starting to receive more scrutiny. Former Lib Dem health minister Norman Lamb has described it as ‘virtually impossible’, while health economist Professor Alan Maynard has called it ‘unattainable’ and a ‘fiction’. But more is needed. NHS England must be more open as to the basis of its claims; the NHS community must unite to batter off the policy zombies and dispel rumours of unicorns; and the public must be reminded of Nye Bevan’s warning that the NHS will only exist for ‘as long as there are folk left with the faith to fight for it’.
Cancer waiting times: ‘target met’?
This piece first appeared on Macmillan Cancer Support’s ‘Evidence and Influence’ blog
Cancer waiting times featured once again in last week’s Prime Minister’s Questions. The discussion focused on performance in one local area – but how does this relate to the national picture?
‘Target met’
Ed Miliband used all of his questions in last week’s PMQs to focus on the NHS, including one on the NHS missing the 62-day cancer waiting times target. David Cameron responded:
Let me bring the right hon. Gentleman closer to home—genuinely, to his home in Doncaster. This is the answer. Here are the cancer waiting times for his constituents: 95.2% of patients with suspected cancer were seen by a specialist within two weeks, and the target is 93%—target met; 97.9% of patients diagnosed with cancer began treatment within 30 days, and the target is 96%—target met; and 87% of patients began cancer treatment within 62 days of an urgent GP referral, and the target is 85%—target met.
It’s important here to look in detail at the most recent figures: while 87.5% of people living in Doncaster Clinical Commissioning Group who were given an urgent GP referral for cancer treatment in the second quarter of 2014/15 began treatment within 62 days, above the 85% target, in the third quarter Doncaster has begun to dip below the target:
The story of missed cancer waiting times is also bigger than Doncaster alone, and while the overall trend is the same – a downward one – much of the rest of the country has fared worse.
Looking at the figures by Clinical Commissioning Group (CCG), more than half missed the target in the most recent quarter. England is now a patchwork of missed cancer targets (click below to view our interactive map):
And at a national level, England as a whole has missed the 62-day target for every quarter so far in 2014/15, and four quarters in a row. In the most recent quarter 68 trusts (see footnote 1) in England failed to meet the target, leaving more than 5,000 people waiting more than 62 days to start urgent treatment. That’s thousands of worried patients; thousands of families in unnecessary distress; and thousands of people potentially being treated too late to experience the best possible outcomes.
What explains missed cancer targets?
NHS England has previously said the failure to meet this target is in part explained by an increase in the number of patients beginning treatment for cancer following urgent GP referrals.
While referrals have continued to increase, the NHS maintained performance against the 62-day target for nearly five years despite rising referrals, and there is nothing about the past year of referral trends that is especially unusual. The number of urgent GP referrals has risen quite predictably by between 10-12% a year for the past four years, and 2014/15 has followed a fairly similar trend; annual growth is predicted to be around 14% (see footnote 2). A more in-depth look will be needed to determine exactly where the bottleneck lies.
Cancer isn’t fixed
Whatever the cause, the government must take serious steps to improve performance against cancer waiting time targets. We know that being diagnosed early is essential if patients are to experience the best possible outcomes, and the UK currently lags behind much of the rest of Europe’s cancer survival rates. Put simply, cancer isn’t fixed. That’s why Macmillan is calling on the next government to commit to delivering cancer outcomes that match the best in Europe by the end of the next parliament.
The 68 trusts are based on providers who give first treatment to more than 5 people with cancer in Q3 2014-15. http://www.england.nhs.uk/statistics/2015/02/18/provider-based-cancer-waiting-times-for-q3-2014-15/
Based on data from Q1 to Q3 2014/15 and estimate of Q4 2014/15. Q4 2014/15 estimate is based on previous proportions of the annual referrals in Q4.
NHS Change Day: let's get back to the grassroots
This piece first appeared on the Guardian Healthcare Network
Anyone who has followed it since it began two years ago will have noticed that NHS Change Day pledges are becoming the new year’s resolutions of healthcare: lofty, vague and unlikely to happen.
Let’s go back to the beginning. NHS Change Day is a response to the “computer says no” elements of NHS culture. It’s less about red tape – changing regulation is thoroughly out of scope – and more about giving excellent staff the permission to trust their professional judgment and get on with sensible, obvious stuff they can’t believe no one’s already fixed.
Working in an NHS organisation of thousands and a collective health service of 1.4 million, there can be a never-ending chain of people to involve in decision-making and sign-off. Change Day says: trust your instincts; and if you’re a manager, trust your staff.
The best pledges, some of them profiled on the Healthcare Network, are the practical ones. Take the sepsis toolkit of straightforward guides to help clinicians spot sepsis early. Or the #stopthepressure campaign to take small, daily steps to reduce avoidable pressure sores in hospital beds. These are real, practical things that actual people are promising to start doing very soon, if they haven’t started already.
It’s vital that Change Day doesn’t become yet another policy wonk wishlist. Search the #nhschangeday hashtag on Twitter and you’ll find the wonks out in full force. Crap pledges are easy to recognise because they go along the lines of “something something, better care”. Here are some real examples:
- “It’s #NHSChangeDay and I pledge to continue work to break social stigma on mental health and work towards improving services.” Sounds important. Now what?
- “This #NHSChangeDay we celebrate the role of nurses, HCAs and midwives who adapt every day to provide high quality care for their patients.” Nurses, healthcare assistants and midwives are indeed excellent. What one small thing could all of them do to make the NHS that little bit better?
- “I pledge to work to improve quality of life and experience for young people with arthritis and long-term conditions.” I see what you’re trying to do there, rheumatology researcher, but doing your job is not a pledge.
- “I pledge to be the Beyoncé of occupational therapy.” Actually, I like this one too much to make fun of it. Occupational therapy needs more Beyoncés.
Good pledges follow the lead of the NHS Change Day organisers. As Danielle Baker has written elsewhere, last year’s 800,000 pledges demonstrated a groundswell of support for distributed leadership (or, in human speak, trusting brilliant NHS staff to do what they do best). But in 2015 the organisers were calling on those in the NHS not to make a pledge, but to record and share their actions – the stuff they were actually doing. That message didn’t quite seem to get through this year, but enormous kudos are due to people like Jeremy Tong, who’ve turned last year’s pledge into this year’s how-to guide.
So I’m proposing that for next year’s Change Day, we all adopt one of two pledges (or actions, if we’re being picky). Option one is that we change the name to “NHS STFU and JFDI Day” (and I’m not talking about involving the Southern Tenant Farmers’ Union). Option two is let’s all agree what makes a good pledge – staff and teams giving themselves permission to make common-sense, human-sized changes – and leave the wonk talk in the conference centre.
Tesco should not be responsible for tackling the UK’s diabetes crisis
This piece first appeared on the Guardian Healthcare Network
Tesco’s Clubcard is heralded as retail’s most successful deployment of big data. Collect data on your customers’ every purchase and you can ruthlessly mine it when you need to push them to spend that extra 50p.
Every month or so, Tesco sends me what they call vouchers and what I call my own personal consumption and gullibility report. Alcohol is profitable, it says, so we’d like to see you buy more of that this quarter. 150 extra points should do it. 45p off potatoes. Exactly 2.272 litres of milk for free. 65 extra points of fake money off coffee. 25p of real money off bread. We have calculated precisely what it will take to make you come back. We have intelligence on your cheese intake and we intend to exploit it.
This week was different. Along with the bonus booze points, my envelope of ‘11 coupons chosen just for you’ contained a voucher for a diabetes check. What does Tesco know that I don’t? And did it just call me a fat drunk?
In fact, Tesco sent the diabetes check voucher to every customer. Launched in 2007, it has a health check service to promote and a new partnership with a diabetes charity.
Taking your risk of developing diabetes seriously makes sense. 3.2 million people in the UK have a diabetes diagnosis, including the former head of the NHS, which spends roughly a tenth of its money on treating diabetes alone. A further 850,000 have the disease but don’t know it yet. And 11.5 million are at high risk.
Some of those numbers I learned from my diabetes check voucher. On the back, the reference for its 11.5 million figure is this BMJ paper, which confirms a rapid rise in our national diabetes risk. It took eight years for prediabetes prevalence to more than treble in England, a phenomenon apparently unexplained by demographic shifts or measurement artefacts. In this respect, our diets and our health are getting worse, fast.
The authors are gloomy about the chances of preventing risk from translating into disease. “A coordinated response” is required to achieve the “possible, although difficult” task of reversing the trend. But “prospects look poor”. What exactly that coordinated response would look like is left to the reader’s imagination, but the paper my Clubcard voucher recommended I read reckons today’s public health policy fixation on dodgy health checks and voluntary action by the food industry is unlikely to be the answer. With obesity and chronic disease becoming the new normal, the state of public health policy is parlous when it comes to food and the people who sell it to us.
The widely criticised Responsibility Deal (to which Tesco was an early signatory) puts the food industry, rather than regulators, in the driving seat. In their review of the literature on voluntary agreements between governments and business, the London School of Hygiene & Tropical Medicine found that while such relationships with industry can be effective, “there is little evidence on whether they are more effective than compulsory approaches”. In the meantime, the Responsibility Deal has been designed in such a way that makes it difficult to evaluate, while experts describe the pledges made so far as “a drop in the ocean”.
The health MOT, another policy pillar delivered by your local hypermarket, doesn’t stand up to much scrutiny either. The legendary Cochrane Centre, which produces mythbusting evidence summaries on everything from whether fans work in heatwaves (they’re rubbish) to the value of spending £424 million on Tamiflu (someone needs to confiscate the government’s eBay account), concludes that health MOTs are a waste of time. Not that you’d know it if you’ve seen the now ubiquitous, scaremongering adverts for private health screening companies, which warn readers that “preventative screenings are not available on the NHS”. One wonders whether this marketing pressure is what is driving the NHS to introduce its own version of the health MOT in the face of advice from the Royal College of GPs.
That’s not to say targeted tests for the early warning signs of certain diseases among at-risk groups are a bad thing. But with a crisis on the horizon, how many of the 11.5 million understand their own diets well enough to even consider they might be at risk? Are they likely to get to grips with the situation quickly enough in an environment that puts the onus on individual responsibility? And are we really leaving it up to the very people who profit from our ill health to run public information campaigns?
We should all play more of a role in managing our own health. The trouble is, there just might not be time for us to learn about what’s really in our food and book our own tests before the NHS has to shoulder the burden of millions more people with avoidable chronic disease. We need there to be more to public health policy than voluntary agreements with industry, dodgy private healthcare marketing campaigns, and diabetes tests with your doughnut vouchers.
Explaining the NHS reforms using only the 1,000 most commonly used words in the English language
The new NHS structure
Have you ever heard of Up-Goer Five? It’s a game where people try to explain a hard idea using only the ten hundred most used words. It’s not easy. It makes you think really hard about what you mean.
Huw Jordan said I should use Up-Goer Five to explain what I think of the big changes that happened not long ago to all the hospitals and doctors and stuff. Here we go.
There are four parts. Part one is about how things worked a long time ago. Part two is about what changed since then. Part three is about the stuff the people who are now in power just did. Go straight to part three if you just want to know about that. Part four is about what all this stuff means.
Stuff that happened a long time ago
65 years ago, people needed money to go to hospital. People without money could only hope a kind hospital would let them in and make them better — but for a lot of people, that didn’t happen. Instead they lived in pain or died early. People with less money died sooner and were sicker than people who had a lot. Some people said this showed we thought their lives mattered less. They had a point.
During the second big world fight, all the hospitals worked together for the first time. People said this was good and the hospitals should keep on doing it. After the fight ended, a lot of hospitals needed money or they would have to close. Something had to be done.
At the same time, we decided never to let money get in the way of making sick people better again. We would all pay a bit every month — everyone would pay what they could — and all the hospitals and doctors would be free when we needed them. Doctors would never need to ask how much we had, only how sick we were. The hospitals would talk to each other too, and work together to make the sick people better faster. By working together, they would make sure they didn’t spend more than they had to.
So, people would help each other, and hospitals and doctors would help each other too, and all the hospitals would have enough money to help everyone.
Most of us were very happy and felt good about what we had done together. We had made something new and exciting, and made a better place to live. Not many people in the world had that.
Some people, especially the people who had money and had never had to worry about paying the doctor, couldn’t understand why we had to help the people without money get better, or why they had to pay for it. Why couldn’t the people in small houses just work harder and pay for it themselves? Then they would live longer. Life is hard and they should be okay with that.
Things that have changed since then
Two things are different now. All in all, they are both very good things, but they do cause some problems.
The first thing is that by making more people better, lots more people lived longer. But because they didn’t keep working until they died, there was less money to go around from the young people who paid a bit each month to keep hospitals running. The number of old people got bigger a lot faster than the number of young people.
The second thing is that doctors with big brains figured out more ways to make us better, and because of this new stuff we spent a lot more money than we thought we would spend when the plans for all of this were first written.
The people in power had to decide what to do. Should we all pay more? They were scared to ask. Should people have to pay for doctors again, sometimes? They knew we would hate them if they did that, and not give them power again.
Then they thought, ah, here’s a bright idea. Let’s make hospitals work like businesses. We will give all the money to people in offices far away from hospitals, and they will make the hospitals play a game for it. By playing the game, hospitals will make the money go further.
It will also let sick people decide where to go, they said, and the best hospitals will make the most money. (But really, sick people just want to get better and know what is happening to them – and a lot of the time they don’t even know enough to decide well.)
(Important: the people who live up in the cold place, the people who live over to the left and the ones who live over the little bit of water who get rained on a lot thought this was crazy, so they did their own thing.)
The stuff that just happened
The people who were in power before did a lot of stuff to make hospitals work like businesses. They said this would save hospitals money, which they could use to help more people. The facts didn’t exactly agree. Not many of us were paying attention, so we let them do it anyway.
The people who came into power three years ago just did even more of that stuff. Even though they promised they wouldn’t, they said everything had to change. They took the way hospitals and doctors work together and broke it up into hundreds of little groups, all playing a game against each other, like businesses do. It was hard to understand and even harder to explain.
At the same time as changing everything, they said there would be no more money, even though there were more people to help and more ways to help them. In the next ten years, we would need a lot more money to give all the sick people what they needed to get better, but this wasn’t allowed. Instead we had to make hospitals even more like businesses, and make doctors run the businesses. Having doctors decide how to help sick people was a good idea — the people in offices didn’t really know what to do and didn’t care as much as doctors. But doctors didn’t train to be doctors because they wanted to manage businesses.
Making big changes to the way things worked was one problem. Having to get used to spending less money was another. Both problems together made one big and very bad problem that was too hard to do all at once. Not without hurting the sick.
There was also a third problem. The people who ran hospitals had already ended up being more interested in the business and numbers stuff than making sick people better and keeping hospitals safe. Some hospitals were not safe at all, and people who should have been helped died. More and more, people were telling lies.
Problem four was that the people in power said it didn’t matter who made the sick better as long as people got the care they needed without throwing away money. They said business people had big brains and would help everyone out by running bits they hadn’t been allowed to run before. For the first time, this meant some of the money we paid every month would go to helping business people buy nice houses instead of caring for the sick. The businesses could decide to run only the parts that made them the most money, so they picked the easy bits and left hospitals to do the hard stuff.
That was the most important change. The relationship between the people who manage hospitals, those who care for the sick and the sick people themselves would be different. Now money would come before care. Businesses would manage hospitals to make money for themselves, instead of putting that money back into making our hospitals better. They would cut everything they could get away with, not so they could pay to care for more people but so they could make their houses bigger and drive faster cars. It would be a race to the bottom.
What all this stuff means and why it was done
Businesses don’t always tell the truth or help each other, because they don’t want other businesses to do as well as them, and they don’t want to look bad in case people spend their money somewhere else. When hospitals do this, they stop working together for the good of the sick, and they throw away more money. The problem we already had with some bad hospitals not telling the truth and hurting the sick would only get worse.
Remember how all this started — hospitals had to work together. But they forgot. Lots of people did.
Having more businesses caring for the sick made it even harder to work together. Lots and lots of little parts each making cuts and trying to make the other parts pay instead is not a good way to save money. Hospitals, doctors and others who care for the sick need to work together as one big family, because that is the only way to put the money they have to best use.
Saying it doesn’t matter who makes sick people better is the first thing you need to do if you want give businesses a way of making money from running hospitals. It makes the job of caring for the sick less about helping people and more about making money. It makes it very easy for things to change one day so businesses can make doctors say, “This is how much care we can give you for the money everyone pays each month. Would you like quicker care, better care? We can do that, but only if you have money.” And then we will be right back where we started. People with less money will die sooner and be sicker than people who have a lot. The people with money will say, “Why couldn’t the people in small houses just work harder and pay for themselves? Then they would live longer. Life is hard and they should be okay with that.”
Eventually, the people in power want all hospitals to be run by their friends’ businesses. Their business friends gave them money to make sure this would happen, and are very happy about this first big step toward making that dream real.
The people in power say they are not making cuts, even though they have made cuts every year since they came into power. At the same time, they are making big changes, and this makes things very hard. We did need changes, but the changes we needed were ones to help us all work together to give the sick the best care and make the best use of the money we have. Instead, we got a big business game which makes that harder to do than ever before.
The people in power never believed in the idea of caring for people without money. They never liked the idea of doctors not having to think about how much money someone had, only how sick they were — they liked the way things were in the past.
They always wanted to do this, and now we’re letting them. And the place is getting less caring.
They were right about giving doctors more power to decide stuff though, so they did do one good thing.
Surgeons vs. Freedom of Information
Every surgeon in England has a scorecard. How many operations they performed, what type of operation, how many of their patients survived longer than a month after surgery, how many had complications, and so on.
If you’re having an operation, you might want to see that scorecard. Or perhaps you won’t. To me, surgeons are like pilots: I know most are good and a handful aren’t, but it’s just easier to live in a world in which I think about them as meticulously precise robots rather than human beings prone to mistakes.
Either way, it should be up you to decide whether that scorecard is important and to interpret it sensibly. But you haven’t been trusted to do that. Surgeons’ scorecards live on NHS computers you’re not allowed access to.
Until now. Surgical outcome data is finally going to be published in England.
Consent
Groundbreaking. Or as they say in Scotland, welcome to 2005.
It’s been eight years since the Scottish Information Commissioner ordered the release of surgical mortality data, and ten years since the operations those data describe were performed. England is playing catch-up.1
But unlike the Scottish release of surgical data, in England surgeons themselves will decide whether their own scorecards will be published, because the Healthcare Quality Improvement Partnership2 reckons they “retain the right to exercise consent” under the Data Protection Act. The patients they operated on won’t have a say, and neither will their next patient.
Here’s why that’s wrong.
Privacy vs. public interest
This is about to get a bit technical. Stay with me.
There are two competing laws at play here. The Freedom of Information Act grants the public the right to information held by public bodies, subject to a few public interest exemptions. The Data Protection Act protects your personal data and mine from prying eyes. Sometimes there’s a conflict, and it’s for the Information Commissioner and the courts to get the balance right.
An example: let’s say I want to know who gets paid what in a hospital. Specifically, I want to know what my friend the physiotherapist gets paid, so I write an FOI request to the hospital asking for that information. I’m not exactly Edward Snowden and the hospital won’t tell me my friend’s personal information, though they might tell me how many physiotherapists they have and on which pay bands. The former would breach my friend’s right to privacy, whereas you could make a reasonable public interest case for the latter.
But what if instead of my friend’s salary, I want to know how much the chief executive gets paid, because I’ve heard a rumour they received a pay rise in the same year my friend lost her job? This is where the balance falls the other way: the hospital boss is entitled to a certain amount of privacy, but in this case privacy is trumped by the public interest, particularly because a chief executive should expect a greater degree of public scrutiny than a physio.
Groundhog Day
Freedom of Information laws are different in England and Scotland,3 but the same Data Protection Act applies across the UK. The same law that couldn’t prevent surgical mortality data being published in Scotland is being used to justified its nondisclosure in England. It’s mad. Here’s the Scottish Information Commissioner’s conclusion to his 2005 decision:
Where similar issues have been addressed by Commissioners, Ombudsmen or Courts elsewhere, the tendency has been to draw a distinction, as I have done, between personal and professional information, as well as to distinguish between information gathered by routine systems and those systems which may be susceptible to the withdrawal of voluntary participation.
I take the view that the information requested constitutes personal data relating to surgeons’ professional lives. It is collected by administrative procedures in the work place in which surgeons are employed and it describes their professional functions and outcomes from or related to their working activities. The scope for adverse comment or conclusion is limited to professional matters. While that may cause annoyance or resentment, it does not constitute damage or distress to the extent required to be exempt from disclosure.
We are having the same debate about the same law but reaching different conclusions, eight years apart.
The specific section of the DPA being used by surgeons as the justification for their right to block data being published is Schedule 2. Here are the relevant bits:
Conditions relevant for purposes of the first principle: processing of any personal data
1) The data subject has given his consent to the processing.
2) The processing is necessary:
(a) for the performance of a contract to which the data subject is a party, or (b) for the taking of steps at the request of the data subject with a view to entering into a contract.
3) The processing is necessary for compliance with any legal obligation to which the data controller is subject, other than an obligation imposed by contract.
Paragraph 1 gives surgeons a right to consent to the use of their personal information. Para 3 allows information to be published if the NHS is required to publish it by a law such as the Freedom of Information Act.
Read the Scottish decision again. It’s clear to me that the case must be made that surgical outcome data is not solely personal data belonging to surgeons, but data about their professional lives in which there is a clear public interest. Publishing surgical outcome data “may cause annoyance or resentment [but] does not constitute damage or distress to the extent required to be exempt from disclosure.”
Remember the salary example. The hospital boss is expected to be subject to a certain amount of public scrutiny, and the same should be true for surgeons.
What next?
There are more important forces at play than surgeons’ vanity. It is patronising to say the public cannot be trusted to interpret this information sensibly, and facetious to argue that the same data protection law that exists in Scotland should hinder the release of the same information in England.
Jeremy Hunt is broadly right to argue against surgeons who block the release of surgical outcome data (though I will never understand England’s obsession with putting everything in league tables).
But naming and shaming surgeons who block the release of their data isn’t enough — the Department of Health should take the case to the Information Commissioner and the courts.4
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Disclosure: between 2008-2010 I worked with the then Commissioner in his capacity as Rector of the University of St Andrews. ↩
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HQIP is a “consortium of the Academy of Royal Colleges, the Royal College of Nursing and National Voices”: hqip.org.uk/about-us. ↩
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A summary of the differences: Scotland’s law is better. ↩
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Thanks to Johnathan Reid for prompting this post, with his question, “Can you help clarify how release of surgical outcome data is controlled via surgeons’ data protection rights & not their patients?” ↩
Collaborative audio editing in Audacity
I’ve started producing a podcast with Huw Jordan, and at the moment we’re recording interviews for our second episode.
I live in Hampshire and Huw lives in London, so we needed a way to share audio files from interviews and work on rough edits without having to send huge project files back and forth all the time.
It turns out that sharing an Apple Lossless version of our raw interview through a shared Dropbox folder, then using Audacity to generate a text file containing a list of edits, is a pretty lightweight method of doing this. Here are the notes I’ve written on how to do it (mostly so I don’t forget).
What
This is an easy way for us to edit raw interviews down to the good bits on PC or Mac, share the edits, and then get them into the software I’ll use for the final mix.
Why
There are plenty of ways of chopping up sound files, but using labels in Audacity in the way I’ve described here means we can:
Send edits between programs and Windows / Mac
Preserve the entire original recording so I can do fades etc (non-destructive editing)
Keep Dropbox space usage and uploading / downloading time to a minimum
Annotate clips, and get those annotations to show up in Final Cut
Edit on any computer with free software
How
1. Download and install the newest version of Audacity: http://audacity.sourceforge.net/
2. Open the recording in Audacity: File → Open. If Audacity asks you how you want to import it, choose ‘read the files directly from the original’.
3. Start playing the recording. When you get to a good bit, go to Tracks → Add label at playback position (in the menu it should show you a keyboard shortcut for doing this). Type something short that’ll make sense later and remind us which bit it is, then press enter. You can do all this without stopping playback.
4. When you get to the end of the section you think we should use, add another label and call it ‘cut’.
5. Repeat for the whole recording. Every section of good audio should start with a descriptive label or transcribed speech and end with a ‘cut’ label. It should end up looking like this:
6. When you’re done, do File → Export labels. Name the file as the interviewee’s name, e.g. ‘Graham labels’, and save it to the desktop.
7. As long as you’ve saved the labels file, you can safely close Audacity. It’ll ask you if you want to save an Audacity project file but there’s no need to do this.
8. Import the original unedited recording into iTunes. Then, in the iTunes preferences, under Import Settings, tell it to import using Apple Lossless Encoder. Go to the file you just imported in iTunes, right-click it, and click Create Apple Lossless Version. Drag the file iTunes just created to the desktop.
9. Make a folder in the Dropbox podcast folder and name it e.g. Harry Cole.
10. Move the Apple Lossless file and the Labels file into the Dropbox folder.
Result
I can open the file and the labels in Audacity, move or change labels and add my own, then get Audacity to automatically chop the recording into bits for importing into Final Cut. The end result in Final Cut is this:
If you want to get Audacity to chop the file for your own reference, just do File → export multiple, choose the export location, tell it to split files based on Labels, and to name files with Numbering before Label/Track Name. Untick overwrite existing files. Keep clicking OK every time it asks you to edit metadata. You’ll end up with a bunch of audio files, like this:
Writing longer notes
For lengthier notes it’s still best to use Google Docs, but you can import the Labels text file you generated with Audacity into Google Docs and add further notes, e.g.:
68.954845 68.954845 uhh never
This might be good for something
73.505956 73.505956 cut 111.005982 111.005982 where were you when you decided
He went off on a giant tangent here about walking the length of Britain… not really relevant but could overlap bits of this
How to open and change edits I’ve made
Open the recording in Audacity then click File → Import → Labels and select the labels text file for the recording. When you’re done making changes, export the labels file and name it as e.g. ‘Graham labels 2’.