News, comment and analysis across the sectorClare Horton
Report says data covering in-patient stays between 1997 and 2010 were used to track patients' medical histories
Less than a week after the NHS was forced to postpone its huge GP and hospital record-sharing plan, it has emerged that a major insurance body bought more than a decade's worth of hospital data covering 47 million patients which, it was claimed, is to be used to help insurers refine their premiums.
The Staple Inn Actuarial Society said that data covering all hospital in-patient stays between 1997 and 2010 was used to track patients' medical histories, identified by date of birth and postcode, according to the Daily Telegraph.
The details were then reportedly combined with information from credit ratings agencies and used to advise insurance companies, resulting in increased premiums for most customers below the age of 50.
The newly formed Health & Social Care Information Centre (HSCIC), which collects national health and social care data, said that the records referred to by the Staple Inn Actuarial Society had been provided by a predecessor body, the NHS Information Centre.
It insisted that the records were not used to analyse individual insurance premiums but to analyse general variances in critical illness.
"The newly formed HSCIC can now only provide HES [hospital episode statistics] data to organisations that are looking to improve the way they are run for the benefit of their patients," it said in a statement. "This data is completely protected and does not identify individuals."
The news comes at a time of heightened sensitivity about patient record confidentiality after the postponement of the NHS's massive care.data scheme. The project, which would be the first time that the entire medical history of the nation had been digitised and stored in one place, has been put on hold for six months.
Advocates say that sharing data will make medical advances easier and ultimately save lives because it will allow researchers to investigate drug side effects or the performance of hospital surgical units by tracking the impact on patients.
However, privacy experts warn there will be no way for the public to work out who has their medical records or to what use their data will be put.Ben Quinn
Professional body's warning comes as Labour says lack of appointments at surgeries is putting A&E units under pressure
Patients will fail to get a GP appointment when they are unwell on more than 34m occasions in England this year because funding cuts are affecting services, the Royal College of GPs has warned.
The professional body said GP practices are being brought to their knees by an unprecedented fall in money for healthcare in the community and rising demand for their services.
Labour haswarned of a crisis in A&E because more patients are flocking to emergency wards, arguing that a key reason for the pressure on hospitals is patients being unable to get appointments at their local surgeries.
Dr Maureen Baker, chairman of the Royal College for GPs, said: "GPs and practice nurses can't keep doing more for less and now that funding for general practice in England has slumped to just 8.5% of the NHS budget the service we provide is in crisis.
"All three political parties say they want to see more patients being treated in the community, where care can be provided to patients more economically, in their own surroundings, and yet resources are increasingly being diverted away from communities and into hospitals.
"By continually diverting resources into hospitals, we have fuelled a real and growing crisis in general practice."
Successive governments have promised to make it easier for people to get GP appointments, amid persistent complaints about unavailability in some areas.
David Cameron last year said he would like to force surgeries to open from 8am to 8pm and over the weekend to ease pressure on A&E units, a scheme currently being piloted
However, Andy Burnham, the shadow health secretary, blamed growing complaints on the government's decision to scrap a Labour pledge that patients should always get a GP appointment within two working days.
"Within days of taking office, David Cameron scrapped Labour's guarantee that all patients should be able to get a GP appointment within two working days," he said. "In December, Labour called on the government to reverse this decision but Tory MPs voted against. It is one of the reasons why A&E departments are now under such pressure.
"On David Cameron's watch, it has got harder for people to get GP appointments. Patients call the surgery early in the morning only to be told nothing is available for days. It is unacceptable and ministers must take practical steps to make sure patients can see their GP when they need to."
The royal college said it calculated the 34m figure from data in the GP Patient Survey, which found 10% of patients who sought a consultation with a GP or practice nurse failed to get one. Surgeries see patients for around 340m appointments per year.
It said almost 11% of the NHS budget was spent on general practice in 2005, compared with 8.5% in 2011 – a cumulative loss of £9.1bn at the same time as 40m additional appointments are being requested.
The college estimates that the average number of consultations carried out by each GP in England per year has increased by 1,450 since 2008 from 9,264 to 10,714.
However, the Department of Health accused the royal college of using partial and conflated data, confusing the number of people and consultations.
"The GP survey showed the vast majority of patients are satisfied with their GP and rated their experience of making an appointment as good," it said.Rowena Mason
It has been prescribed by the NHS for depression since 2004 but recently mindfulness has spawned a whole industry of evening classes and smartphone apps. What is the evidence that the practice – part meditation, part CBT – works?
At just after 6.15pm in a brightly lit conference room in Oxford, 22 grown men and women are lying on the floor trying hard to focus on their left knee. From across the room a lilting, calm voice has already invited the group to explore their feet and ankles with "gentle curiosity" and is heading up through the body. "When your mind wanders, gently and kindly escort your attention back to your left knee," she tells us.
It's not easy. Lying on a blue plastic mat, dressed in an uncomfortable work suit and open necked shirt, with an air conditioning unit grumbling close by, my mind isn't that keen on being escorted anywhere. Instead, it's wondering if anyone else is struggling to focus. It's wondering how I will be able to recall this experience in enough detail to jot it down afterwards. It's thinking about the Viking occupation of Grimsby, how geckos walk up walls and, most disturbing of all, whether Eric Pickles would float.
According to Marie Johansson, the leader of our session, that's all fine. Even the Eric Pickles bit. This meditation isn't about relaxing, emptying the mind or filling the head with peaceful thoughts. "The intention is to be aware of physical sensations of the body and also simply to notice what the mind does," she says afterwards. "The mind wanders and it entertains itself with all sorts of things. All we are required to do is notice these thoughts. We are not suppressing it or emptying the mind, or making the thoughts go away."
For the growing army of people who have taken part in mindfulness training, these reflective rituals of the 40-minute "body scan" will be all too familiar. The scan plays a key part in helping people to become more mindful – to live more in the moment and to spend less time anticipating stresses, or reliving disasters from the past.
Mindfulness is everywhere at the moment. If you don't know someone who has done a course, downloaded an app or read a book, you will soon. Based on centuries-old Buddhist meditation practices and breathing exercises, it is prescribed to thousands of patients on the NHS each year to help prevent anxiety, depression and stress. Even more pay for private classes believing that they improve the quality of their lives and relationships. And over a million people looking for mindfulness on-the-go have downloaded apps such as Headspace. The mindfulness industry is vast, and growing weekly.
So can an approach so deeply rooted in eastern spiritualism, and which at times comes close to sounding like new age waffle, really work?
Professor Mark Williams thinks so. One of the pioneers of mindfulness-based cognitive therapy in the UK, Williams is a recently retired professor of clinical psychology at Oxford University. With colleagues from Cambridge and Toronto, he developed an eight-week course that is being taught across the world. The course is based on a similar programme developed in the late 1970s by US medical professor Jon Kabat-Zinn to cope with stress.
"It's a preventative treatment – that's what makes it different," says Williams. "People usually seek treatment when they're depressed or anxious, and cognitive therapy is one of the major success stories in treatment. But cognitive therapy is used when people are ill. What we wanted to do was extend this to teach people skills to stay well that they could use before depression threatens."
The idea behind mindfulness is straightforward. Kabat-Zinn calls it "paying attention on purpose, moment by moment, without judging". Practitioners argue that the brain's habit of reliving past stresses and worrying about potential future problems can become an obstacle to mental health.
Mindfulness encourages people to get those critical thoughts about the past and future into perspective so they no longer dominate. Instead, people are given tools to help them become anchored more in the present, and to focus more on the sensations of the world from moment to moment. That is achieved through meditation techniques such as the body scan – a practice where participants are "invited" to focus on the sensations of their own body. Thoughts that pop up during the exercise are acknowledged and "observed kindly" before the mind is refocused back to the sensations of the body.
Other practices focus on breathing and on linking stresses and mental distractions to physical sensations in the body such as tense shoulders, clenched hands or shallow breath. It sounds simple, but it's not. It takes hard work and lots of practice.
"A good example of how it can work is when you're kept awake at night thinking," says Williams. "You toss and turn and you get angry because you can't sleep. The anger doesn't help, but you can't seem to stop it. Mindfulness isn't about suppressing those thoughts, but about enabling you to stand back and observe them as if they were clouds going past in the sky. You see them and you cultivate a sense of kindness towards them."
The best documented benefits are preventing relapses of depression, where it helps people entering the downwards spiral to notice when self-critical thoughts are beginning to arise and to help prevent those negative thoughts from escalating. And it draws attention to small pleasures around people, helping to lift mood.
For those suspicious of therapy and mysticism it can sound vague and woolly. But Williams insists this is a practical, clinically proven approach. And while its origins are in Buddhism, it is completely secular.
The clinical evidence for mindfulness as a way to prevent depression, stress and anxiety appears to be sound. A review of the eight-week course was published in 2011 in Clinical Psychology Review by Jacob Piet and Esben Hougaard of Aarhus University, Denmark.
After looking at six clinical trials involving 593 people, they concluded that mindfulness-based cognitive therapy reduced the risk of relapse for patients with at least three previous incidents of depression by 43% compared with people who received treatment as usual. However, there was no significant benefit for people with fewer than three major incidents.
A review of the research in Clinical Psychology Review last month by researchers at the University of Montreal looked at 209 studies covering 12,145 people. It concluded that mindfulness was an effective treatment for a variety of psychological problems, "and is especially effective for reducing anxiety, depression and stress". Other studies have shown that it is effective for preventing anxiety and mood disorders and may be good for other psychiatric conditions including bipolar disorder.
These are the best of the recent studies – but the published evidence goes back further. In 2004, Nice – the NHS's rationing body – was convinced enough of the benefits that it ruled mindfulness-based cognitive therapy was cost effective. Its most recent advice, updated in 2007, is that it can be prescribed for people with three or more episodes of depression. There is also growing evidence that it's effective for chronic long-term health conditions such as ME.
Victoria Jackson, an Oxford-based publisher, was recommended a course by her GP as a way to ease symptoms of chronic fatigue syndrome.
"Taking a mindfulness course was something I thought long and hard about. I was concerned about the Buddhist origins of mindfulness. I'm an atheist, so the idea of engaging with anything mystical worried me. I'm also a very pragmatic person and anything with the word 'therapy' attached to it makes me uneasy. Moreover, there's been a lot of controversy around the way ME has been regarded as a psychiatric disorder, and I felt concerned that following a mindfulness course would seem to endorse this view about the nature of the illness."
After an eight-week course at the Oxford Centre for Mindfulness in 2012, she noticed an improvement in her health. She now spends 10 to 20 minutes on formal meditation every other day – and snatches informal moments of mindfulness when she can – and says it is something she is consciously trying to apply to her life.
"There's a popular notion that it's a panacea – it's not," she says. "Practising it in a formal or informal way is a constant challenge. The brain doesn't like being still and being focused on something as mundane as your breath. The challenge is to observe your mind wandering, not criticise, and just lead it back."
The changes brought about by mindfulness are difficult for Jackson to quantify.
"It has given me lots more options in my life, but only when I wake up to them. There's a sense that we drift through our lives. Mindfulness gives you an awareness and therefore a choice as often as you choose to bring it to mind – that ability to step out of the situation and evaluate things and make a conscious choice: do I want to pick up my smartphone and distract myself, or choose to see the sunset and notice how it makes me feel?
"But it has worked. Exhaustion can have a cyclical pattern in ME. A lot of people overdo things and become exhausted. Then when they've rested and are feeling less tired, they overdo things again. That's a pattern I fell into. There's been a huge benefit in being more aware of that pattern and the way I feel, and making a conscious choice of how to react and look after myself."
Marie Johansson, who teaches mindfulness at Oxford's Mindfulness Centre, says the approach can also benefit the healthy.
"People often say they notice how much of life passes them by," she says. "Suddenly they are noticing things in nature, in their friendships and neighbours – perhaps they have different relationships with their children and families. They are more present in what they do and they get a sense of appreciating more fully the life they are living."
But there is a danger that the benefits of mindfulness are being overstated, without the clinical data to support them. There are books on applying it to business leadership, to parenting and to weight loss. There are mindfulness exercises for children and guides on living with pain. There is no shortage of courses, books or even smartphone apps being offered to an enthusiastic public – and sometimes little way for people to tell whether they are authentic, quality-controlled and reliable – or on the fringes of new age crankism. Even the experts in mental health can occasionally overstep the mark.
Oxford University and the Mental Health Foundation (MHF) have worked on a 10-session online course, available for £60. On its website, the foundation claims that "the effectiveness of the online course is the subject of a highly significant research paper by Oxford University published in BMJ Open". It adds: "The reported average outcomes for completers of the course show participants enjoying reductions of 58% in anxiety, 57% in depression and 40% in stress."
That is true, but only to a point. The MHF website glosses over an important caveat in the BMJ Open paper. The authors, who include Prof Williams, point out in the paper that the study had no control group, meaning there was nothing to compare the course with. More research is needed.
Williams is acutely aware of the dangers of overclaiming.
"A lot of people think it will cure everything. But we know there is nothing that cures everything. There is some interesting work in psychosis, bipolar disorder and schizophrenia but it's in its early days. There's a lot of hype around mindfulness and we need to be cautious because it doesn't serve our science or patients well if we're overenthusiastic. We have to make sure the science catches up with the enthusiasm."David Derbyshire
40% of acute trusts, 20% of ambulance trusts, 11% of specialist trusts and 7% of mental health trusts are in deficit
The number of NHS foundation trusts in England in financial difficulty has almost doubled in a year from 21 to 39, a study by their watchdog has found.
The study from Monitor, which regulates England's 147 trusts, found that their combined deficit was £180m, £12m higher than anticipated. Five trusts account for 60% of the deficit.
The regulator had predicted that only 24 trusts would be in financial trouble.
The Midlands is the most financially troubled region, with 14 of its 38 trusts being, including Peterborough, Mid Staffordshire, Sherwood Forest and Milton Keynes in deficit, the report said.
Overall, 40% of acute trusts (33), 20% of ambulance trusts (one), 11% of specialist trusts (two) and 7% of mental health trusts (three) are in deficit.
Mid Staffordshire, which runs the scandal-hit Stafford hospital, became the first trust to be put into administration in April.
The foundation trust sector as a whole remains in financial surplus, but "the size of the surplus has more than halved since this time last year, reflecting the tough financial climate and foundation trusts' response," Monitor said.
The surplus stands at £135m so far this year, down on the planned £173m.
The research also showed that foundation trusts' performance against a key target for urgent cancer referrals had fallen to its lowest level in two years.
The number of trusts breaching the target for 85% of patients with suspected cancer to start treatment within 62 days of being urgently referred has more than quadrupled in a year.
Quarterly figures for October to December 2013 show that 18 trusts breached the target, up from 12 the previous quarter and compared with just four in the same period the previous year.
Monitor said the reasons given for breaches vary between trusts, but an increase in the number of referrals "is a possible common factor". Late referrals and consultant cover were also mentioned as troubling issues.
Trusts did perform well, however, against a target to see the most urgent cases within two weeks.
Overall, they achieved three other waiting time targets, but more trusts breached all three during the quarter compared with the previous one.
One key target for inpatient treatment showed that 90.7% of patients in November started treatment within 18 weeks of referral. This was down from 92.1% in the previous November, although the overall target was met.
Seventeen trusts failed the target during the quarter, with general surgery and trauma and orthopaedics generating the longest waits.
Overall waiting lists have also risen significantly, the report said, with 1.6 million patients waiting for treatment in December, 14% more than in December 2012.
Of 80 trusts where waiting lists have grown, 75% said a significant increase in referrals was the main reason. A fifth blamed reduced capacity to cope with the numbers and other issues such as data quality.
Monitor said the A&E sector has "so far managed to cope with winter pressures", though 28 trusts failed the four-hour A&E waiting time target during the quarter.
Two-thirds of England's NHS hospitals are now foundation trusts.
Of the 147, 26 are currently in breach of their licence, including eight that are in special measures.
Monitor is also investigating a further eight trusts for potential licence breaches over issues including performance failures and financial problems.
The report also showed that trusts have delivered "efficiency savings" of £867m so far in this financial year, 18% less than planned.
Monitor said the overall picture was that foundation trusts were "performing well in providing quality services to patients in challenging economic times".
Jason Dorsett, the watchdog's financial reporting director, said: "The financial trust sector is doing remarkably well in tough circumstances but is looking a little frayed at the edges."
The shadow health secretary, Andy Burnham, said: "After a decade of improvements in cancer waiting times, progress has been derailed by David Cameron's NHS reorganisation.
"We warned that focus would be lost and that is exactly what has happened. Patients with a life-threatening illness should not face these unnecessary delays."
Worcestershire coroner calls on police after inquest into deaths of three elderly patients operated on by NHS consultant
A police investigation has been launched into the deaths of at least three patients under the care of a surgeon who was allowed to operate for three months despite being already under investigation.
The police were asked to investigate by a Worcestershire coroner who in December adjourned an inquest into the deaths of three patients, all in their 80s, who died at the Alexandra hospital in Redditch.
Worcestershire Acute Hospitals NHS trust employed Sudip Sarker, a consultant surgeon who specialised in colon and bowel cancer, from August 2011 to October 2012. It is running an inquiry line for patients and is still reviewing his cases.
Lawyers representing patients or families who may be affected said they had taken on about two dozen cases.
Police said they could not put a number on how many people could be affected.
The trust said in a statement: "An expert multidisciplinary team has reviewed the medical records of all his patients who had undergone a major operation (eg for bowel cancer). Patients we were concerned about were recalled for further assessment and appropriate investigations.
"A separate review of all patients who had any contact with Mr Sarker (outpatient appointments or minor procedures) is being performed by a team of specialist external surgeons.
"Patients in this group who require further assessment/investigation are also being invited back to the hospital."
Restrictions were put on Sarker's operations in June 2012. The trust said it "would like to reassure patients and their relatives that as soon as it became aware there was a potential problem the trust acted swiftly and responsibly to protect its patients. It alerted the Royal College of Surgeons in July 2012 and asked them to review his clinical practice. While the review was ongoing the trust put restrictions on the surgeon's practice. He was excluded from the trust in October 2012."
The restrictions meant he was allowed to perform certain operations only, under the supervision of another surgeon.
Supt Kevin Purcell said: "We were made aware that there were a number of concerns in relation to the deaths of patients in 2012 who had been under Mr Sarker's care. We are in the early stages of obtaining the relevant information from hospitals and other health organisations in order to conduct our investigation.
"We cannot be specific about numbers at this time but can confirm that the deaths of three patients whose joint inquest was adjourned in December form part of this inquiry. The families of those people have been informed and updated on the situation.
"This is a complex matter which will undoubtedly take a considerable amount of time to investigate thoroughly."
Inez Brown, a partner at the Medical Accident Group, currently representing four clients, said: "I urge anyone who was operated on by him between 2011 and 2013 to visit a medical professional, if you haven't already done so, to confirm any procedure you may have had was performed correctly."
Jennifer Emerson, a medical law expert at Irwin Mitchell, said: "We are running in the region of 20 civil claims against Worcestershire Acute Hospitals NHS trust on behalf of patients or families affected by surgery carried out by Sudip Sarker." Patients concerned about the treatment they received from Sarker can ring a special number at the trust, 01527 503812 during normal working hours. There is also a dedicated e-mail address - firstname.lastname@example.orgJames Meikle
Care.data, the grand project to make the medical records of the UK population available for scientific and commercial use, is not inherently evil – far from it – but its execution has been badly bungled. Here's how the government can regain our trust
Everything would be much simpler if science really was "just another kind of religion". But medical knowledge doesn't appear out of nowhere, and there is no ancient text to guide us. Instead, we learn how to save lives by studying huge datasets on the medical histories of millions of people. This information helps us identify the causes of cancer and heart disease; it helps us to spot side-effects from beneficial treatments, and switch patients to the safest drugs; it helps us spot failing hospitals, or rubbish surgeons; and it helps us spot the areas of greatest need in the NHS. Numbers in medicine are not an abstract academic game: they are made of flesh and blood, and they show us how to prevent unnecessary pain, suffering and death.
Now all this vital work is being put at risk, by the bungled implementation of the care.data project. It was supposed to link all NHS data about all patients together into one giant database, like the one we already have for hospital episodes; instead it has been put on hold for six months, in the face of plummeting public support. It should have been a breeze. But we have seen arrogant paternalism, crass boasts about commercial profits, a lack of clear governance, and a failure to communicate basic science properly. All this has left the field open for wild conspiracy theories. It would take very little to fix this mess, but time is short, and lives are at stake.
The care.data project was promoted in two ways: we will use your data for lifesaving research, and we will give it to the private sector for commercial exploitation, creating billions for the UK economy. This marriage was a clear mistake: by and large, the public support public research, but are nervous about commercial exploitation of their health data.
Now the teams behind care.data are trying to row back, explaining that access will only be granted for research that benefits NHS patients. That is laudable, but potentially a very broad notion. It's one we would want to unpack, with clear, worked examples of the kind of things they would permit, and the kind of things they would refuse. But that's not possible because, bizarrely, the specific principles, guidelines, committees and regulations that will determine all these decisions have not yet been clearly set out. This poses several difficulties. Firstly, the public are being asked to support something that feels intuitively scary, about the privacy of their medical records, without being told the details of how it will work. Secondly, the field has been left open to conspiracy theories, which are hard to refute without concrete guidance on how permissions for access really will work.
That said, many criticisms have been absurd. There has been endless discussion around the idea of health insurers buying health records, for example, and using them to reject high-risk patients. Call an insurer right now and see how you get on: within minutes you will be asked to declare your full medical history, waive confidentiality and grant access to your full medical notes anyway.
Many have complained about drug companies getting access to data, and this is more complex. On the one hand, arrangements like these are longstanding and essential: if medicines regulators get a few unusual side-effect reports from patients, they go to the drug company and force them to do a big study, examining – for example – 10,000 patients' records, to find out if people on that drug really do have more heart attacks than we'd expect. To do this, the UK health regulator itself sells industry the data, in the past from something called the GP Research Database, which holds millions of people's records already. This needs to happen, and it's good. But equally, people know – I've certainly shouted about it for long enough – that the pharmaceutical industry also misuses data: they hide the results of clinical trials when it suits them, quite legally; they monitor individual doctors' prescribing patterns to guide their marketing efforts, and so on. The public don't trust the pharmaceutical industry unconditionally, and they're right not to.
Trust, of course, is key here, and that's currently in short supply. The NSA leaks showed us that governments were casually helping themselves to our private data. They also showed us that leaks are hard to control, because the National Security Agency of the wealthiest country in the world was unable to stop one young contractor stealing thousands of its most highly sensitive and embarrassing documents.
But there is a more specific reason why it is hard to give the team behind care.data our blind faith: they have been caught red-handed giving false reassurance on the very real – albeit modest – privacy threats posed by the system.
Tim Kelsey is the man running the show: an ex-journalist, passionate and engaging, he has drunk more open-data Kool-Aid than anyone I've ever met. He has evangelised the commercial benefits of sharing NHS data – perhaps because he made millions from setting up a hospital-ranking website with Dr Foster Intelligence – but he is also admirably evangelical about the power of data and transparency to spot problems and drive up standards. Unfortunately, he gets carried away, stepping up and announcing boldly that no identifiable patient data will leave the Health and Social Care Information Centre. Others supporting the scheme have done the same.
This is false reassurance, and that is poison in medicine, or in any field where you are trying to earn public trust. The data will be "pseudonymised" before release to any applicant company, with postcodes, names, and birthdays removed. But re-identifying you from that data is more than possible. Here's one example: I had twins last year (it's great; it's also partly why I've been writing less). There are 12,000 dads with similar luck each year; let's say 2,000 in London; let's say 100 of those are aged 39. From my brief online bio you can work out that I moved from Oxford to London in about 1995. Congratulations: you've now uniquely identified my health record, without using my name, postcode, or anything "identifiable". Now you've found the rows of data that describe my contacts with health services, you can also find out if I have any medical problems that some might consider embarrassing: incontinence, perhaps, or mental health difficulties. Then you can use that information to try and smear me: a routine occurrence if you do the work I do, whether it's big drug companies, or dreary little quacks.
This risk isn't necessarily big, but to say it doesn't exist is crass: it's false reassurance, which ultimately undermines trust, but it's also unnecessary, and counterproductive, like hiding information on side-effects instead of discussing them proportionately. To the best of my knowledge, we've never yet had a serious data leak from a medical research database, and there are plenty around already; but then, we are standing on the verge of a significant increase in the number of people accessing and using medical data. There are steps we can take to minimise the risks: only release a subset of the 60 million UK population to each applicant; only give out the smallest possible amount of information on each patient whose records you are sharing; suggest that people come to your data centre to run their analyses, instead of downloading records, and so on. But, while the care.data project might be planning to do some of those things, the ground rules haven't been properly written out yet.
In any case, even safeguards such as these can be worked around. There are companies out there operating in the grey areas of the law, aggregating data from every source and leak they can find, generating huge, linked datasets with information from direct marketing lists, online purchases, mobile phone companies and more. Who's to know if someone will start quietly aggregating all the small chunks of our health data?
This, of course, would be illegal. As Tim Kelsey and others are keen to point out, re-identifying or leaking data in any way would be a "criminal offence". But as this project lands, we're all becoming rapidly aware that incompetence, malice and creepiness around confidential data is policed with a worryingly light touch. Private investigators have little trouble obtaining confidential data from staff in the police force, banks and tax offices, for example.
Here's why: it took a long time for anyone to realise that Steve Tennison, a finance manager in a GP practice, had accessed patients' records on 2,023 occasions over the course of a year, although this was relevant to his work on only three occasions. The majority of records he snooped on belonged to young women: he repeatedly accessed the record of one woman he had gone to school with, and that of her son. The maximum penalty for this is a fine, with a ceiling of £5,000 in magistrates courts. Tennison was fined £996, in December 2013. This is why the public feel nervous, and this is what we need to fix.
It's painful for me to write critically about a project like care.data, because I love medical data, and I know the good it can do. We have a golden opportunity in the UK, with 60 million people cared for in one glorious NHS. Opt-outs would destroy the data, and the growing calls for an opt-in system would be worse: opt-in killed people by holding back organ donation, and more than that, it would exacerbate social inequality around data, because the poorest patients, those most likely to be unwell, are also the least engaged with services, the least likely to opt in. They would become invisible.
So here's my advice: if you're thinking of opting out – wait. If you run care.data – listen. There are three things the government can do to rescue this project.
Firstly, make a proper announcement about what you will do in the six-month delay. You cannot rely on blind trust when it comes to sharing private medical records, so explain that you'll be coming back soon with a clear story. Sort out the governance framework, present unambiguous rules and principles explaining how data will be shared, list the specific clinical codes you're proposing to upload, then give real-world examples of the kind of access applications that would be approved, and the kind that would be rejected. This is fair, and sensible.
Secondly, show the public how lives are saved by medical research. This needs examples, from the vast archives of medical research on cancer, heart disease and more. Alongside that, give a clear nod to the small risks, and an explanation of how they will be mitigated. Never be seen to give false reassurance on these risks; if you do, you will lose patients' trust for ever.
Lastly, we need stiff penalties for infringing medical privacy, on a grand and sadistic scale. Fines are useless, like parking tickets, for individuals and companies: anyone leaking or misusing personal medical data needs a prison sentence, as does their CEO. Their company – and all subsidiaries – should be banned from accessing medical data for a decade. Rush some test cases through, and hang the bodies in the town square.
If the government do all this, they have a good chance of saving a vital data project, and permitting medical research that saves lives on a biblical scale to continue. If the government try to fudge – with half measures, superficial PR and false reassurance – then care.data will fail, and it might well bring down other sensible public health research with it. Lives are at stake. This cannot be left to the last minute in the six-month pause, and time is precious. It's February. If you're thinking of opting out, please don't. But mark your diary for May.Ben Goldacre
Details about Gillian Astbury's care emerge as Mid Staffordshire NHS Foundation Trust set to be sentenced over failings
Details of the poor care received by a 66-year-old diabetic patient who died at the scandal-hit Stafford hospital have emerged as the trust responsible is set to be sentenced over its failings.
Gillian Astbury died at the Mid Staffordshire NHS Foundation Trust-run hospital in April 2007 after two nurses failed to give her insulin. In 2013 the independent Francis report on the trust concluded there had been basic failings in standards of care at Stafford, with hundreds more patients dying than would have been expected between 2005 and 2008.
During the sentencing hearing at Stafford crown court on Friday, Bernard Thorogood, prosecuting, said Astbury had been let down by the "complete absence" of proper systems of handover between nurses, poor record-keeping and communication between wards and clinicians in place at Stafford at that time.
He said: "All the clinical and nursing staff were working in the context of poorly led and poorly run systems with no effective management oversight and control. In short, the nursing staff were set up to fail."
Last year the trust admitted breaching health and safety regulations after the Health and Safety Executive brought a prosecution over Astbury's death.
Mid Staffs has already apologised for the "dreadful" care Astbury received in the short time she was at the hospital, during which time she was transferred between three wards. It said practices had improved considerably in the intervening years.
Thorogood said the basic failings began after Astbury was admitted to accident and emergency with a suspected fractured arm and pelvis following a fall on 1 April 2007.
Mr Justice Haddon-Cave was told that an initial admission process had been carried out correctly, but failings in subsequent handovers meant key information about Astbury was not then passed on.
Described as a "brittle" type 1 diabetic, she needed daily injections of slow-acting insulin to control her blood sugar, and the admitting doctor made a proper assessment of her condition, also setting a trigger level under which her blood glucose should be kept, according to Thorogood.
He said the admitting A&E nurse who initially assessed Astbury properly recorded her diabetes, her need for a dietician, and also came up with a care plan – proving the hospital's staff should have been well aware of her condition. "However, before these arrangements could be set up there needed to be a robust handover system," Thorogood said.
She was transferred from A&E to the hospital's ward 7 on 1 April, but by the time of her death in the early hours of 11 April she had been the victim of a catalogue of errors. Nurses failed to give her daily dose of insulin on the morning of 10 April, and she collapsed and later died in the early hours of the following morning.
Among the failings, her fluid monitoring chart was incomplete and records about food intake were contradictory – one said she was eating, another contained a referral to the dietician, which was never acted upon.
Her patient number was wrongly written from one form to the next, forms were simply not signed by senior staff, while on admission the ambulance crew's record – containing key information – was never attached to Astbury's medical notes.
In one instance, the orthopaedic ward where Astbury was when she died was using an obsolete form that had already been phased out in other wards.
The case was moved to the crown court for sentencing because magistrates ruled their sentencing powers to issue a fine of up to £20,000 would not be sufficient, given the gravity of the offence.
The prosecution was brought three years after an inquest jury ruled Astbury's death was contributed to by low staffing levels and other systemic failures.
The inquest also concluded that a failure to administer insulin to the 66-year-old amounted to a gross failure to provide basic care.
Young people with mental health issues are being placed in adult institutions far from home. This damaging practice must stop
I had it good when I had a nervous breakdown in my teens. I didn't think I did. I previously believed that putting me in an adult psychiatric ward when I was 16 was the act of an unenlightened, befuddled and frankly barking mad health system. I was wrong. Compared with today's adolescents I had it great and this is both a national tragedy and a disgrace.
Twenty-six years ago, my adult psychiatric ward was 15 minutes away from my home. My family could visit easily. A BBC report published this week containing statistics obtained under the Freedom of Information Act (let's still sweep this subject under the rug if we can) tells an appalling tale. Children and teenagers are not just being put in adult facilities that are woefully unsuitable for them, these hospitals are also hundreds of miles from where they live and anyone they love.
Let's be clear what this situation is doing to these young people. It is an act of utter neglect and cruelty. Adult psychiatric wards aren't the celebrity clinics you see on television with a gym and salsa lessons. Their facilities and staffing levels are often basic by fiscal necessity. They are populated by people with mental health problems who may be verbally abusive, physically threatening or simply distressing to be with.
My short experience of such a ward is burnt on my brain: the characters, the size and strength of the men, the frailty of the older women. In maturity it is often difficult to deal with mentally ill people, so why are we asking vulnerable young people to cope with them? They can't. Nor should they have to.
Neither should they be ripped away from what they are familiar with and who they know. Having mental health problems is an excruciating form of loneliness in itself and support from friends and family is often fundamental to recovery. In what other part of the NHS would this level of isolation be acceptable? If your 13-year-old with appendicitis was driven 200 miles to a hospital to have it removed and then put in a dementia ward to recover you would be furious. Parents of children with mental health issues have often fought for years to get treatment and they are too often rewarded with care that is inappropriate and potentially harmful. It's not the fault of the dedicated professionals within the system – I know many of them despair about it too – it's the system itself that is wrong.
It is lazy to blame the coalition. It certainly has withdrawn some vital services, but it is also just continuing the years of underfunding that mental health services have suffered. This is partly because so many childhood and adolescent problems are dismissed as a "rite of passage" or "something that everyone goes through". But schizophrenia is not caused by hormones. Obsessive-compulsive disorder is not set off by your favourite boy band splitting up. They are real illnesses and just as the young body needs specialist treatment, so does the young mind. Effective treatment can only be dispensed within the confines of a dedicated, safe and local environment.
Perhaps for things to change I have to put it in economic terms. We know that many brilliant minds are besieged by demons. Some of our greatest entertainers and our most daring entrepreneurs have spoken out about their early and continuing battles with mental health problems. If we catch the issues of the young early enough, we can help them attain rich, fulfilling lives. They won't be a burden to the state when they are older because they have been left to effectively rot. Quite the opposite – a lot of them could end up in the higher tax bracket, or at the very least not self-medicating with drink or drugs, or drawing benefits. I hate putting it that way, but perhaps reducing young people to a financial spreadsheet might make someone see that it is common sense to look after their mental health appropriately and with compassion.
Almost every day a teenager contacts me and tells me that they are self- harming, suffering from depression or feeling suicidal. I'm not a medical professional and I can't really make someone feel better over Twitter, but my advice is nearly always the same – talk to someone. Talk to a doctor. Talk to a youth worker. Talk to a teacher.
We all need to talk to the people who run the system and who are letting down ill young people horribly. Otherwise we risk condemning a generation to torturous lifelong mental health problems.Rae Earl
Our roundup of the week's top healthcare stories
Our live blog is on hold, so here's a summary of what's been happening across the healthcare sector this week.
The ongoing care.data saga continued to hit the headlines. The Telegraph reported that the NHS's own risk analysis warned patient confidentiality could be undermined by the new medical records database. The database could be vulnerable to hackers or could be used to identify patients "maliciously".
Nick Triggle, the BBC's health correspondant, wrote a piece asking how care.data could go so wrong? He wrote:
The idea with Care.data is to expand this database to include what happens to patients when they are under the care of GPs.
The belief is this could help researchers develop new treatments and improve the monitoring of performance.
But most would argue none of this was communicated by NHS England.
And the Telegraph ran an editorial about data difficulties in the NHS.
The sheer size of the project, however, has given many pause for thought – not least due to the state's longstanding inability to keep the data that it collects secure, from the loss of 25 million child benefit records in 2007 through to a catalogue of smaller-scale incidents. This is especially worrying because the scheme's guarantees of anonymity have proved insufficient for critics, who have argued (convincingly) that it will still be relatively easy for users of the database to identify individual patients.
Meanwhile, in response to the news last week that former Marks & Spencer chief executive Sir Stuart Rose is to advise health secretary Jeremy Hunt on how to build up a new generation of managers to transform failing hospitals, Chris Ham, chief executive of the King's Fund, wrote about what the NHS can learn from the department store. He lists three insights he gained from visiting Marks & Spencer 25 years ago and explains how they are still relevant to the NHS today.
The Guardian, meanwhile, revealed that a King's Fund report stated that GP practices must start working together in federations and delivering far more services in a restructuring of healthcare that is vital to keep the NHS sustainable. In another blogpost for the King's Fund, Ham wrote about making general practice fit for the future. He concludes:
The registered list of patients means that practices are uniquely well positioned to take the lead in developing innovative models of care under the proposed approach. But if they are unable or unwilling to do so, then NHS trusts providing community services and acute services should be offered the opportunity of taking the lead, preferably in partnership with practices. At a time when the need for innovation in the NHS has never been greater, encouraging a variety of approaches to be tested and evaluated has obvious attractions, not least in unfreezing ways of working that appear increasingly anachronistic.
The Guardian also ran a story saying that a funding change could force rural GP practices to close. Large areas of rural England could be left without any GP services for local residents as a result of cuts in national funding.
Journalist Mary O'Hara wrote a piece for Comment is free explaining why we need the online presence of MentalHealthCop whose Twitter account and award-winning blog was suspended by West Midlands police. She explained that mental illness and policing is an extremely sensitive area, and social media can play a positive role.
The Telegraph revealed that doctors are being paid as much as £3,000 per shift by NHS hospitals to fill "endemic" staff shortages in Accident & Emergency units. In an editorial, the paper wrote that high wages for locum doctors and poor decision-making in hospitals could be costing lives.
The good news is that there is a growing push for transparency in the NHS. For instance, the Government is working to release league tables of performance that should not only highlight failures, but also encourage study of best practice. The health service needs to look at itself honestly and rigorously. It cannot continue to fall back on comforting myths about it being "the envy of the world". Failure to get things right – to maintain adequate levels of staffing and to manage that staff well – can be a matter of life and death.
Here's a quick run through some of the top stories from elsewhere this week:
• BBC: Romanian doctors tempted abroad by a better life
• BBC: Ambulance 'postcode lottery could cost 2,500 lives a year'
• The Guardian: Use of police cells during mental health crises to be halved
• The Telegraph: Bristol Children's Hospital 'still in denial' about deaths, say parents
• HSJ (subscription): Employers chief moots end to pay restraint
• HSJ: Three groups set to join in first CCG merger
And here are the top five stories on the network:
• 'More resources to the frontline' slogan damages the NHS
• Struggle to recruit managers will add to cycle of failure in the NHS
• Could bedside TVs be used to give patients access to medical records?
• Could stroppy patients be the dynamo behind the future NHS?
• Future of the health service: the era of community care has arrived
Peter Baker is dedicated to raising the profile of men's health, which he says has traditionally been overlooked
Describe your role in one sentence: To support all kinds of organisations – NHS, private businesses, local government and charities – to begin or continue working to improve the health of men and boys.
Why did you want to work in healthcare? I believed that men's health was unnecessarily poor but largely overlooked. There was a prevailing fatalistic view that men were somehow programmed to die young and nothing could be done to stop that. This was – and still is – totally incorrect.
How do you want to see the sector change in the next five years? Work to improve men's health should be seen as normal and no longer a marginal, underfunded or short-term activity. To give one example, high-street pharmacies should address men's huge under-use of their services by focusing on everyone, not just women.
My proudest achievement at work was ... when I was chief executive at the Men's Health Forum from 2000-12. In 2009, I secured the organisation's role as a strategic partner of the Department of Health (a position it still holds). This reflected just how much the forum's influence had grown since it became a charity in 2001.
The most difficult thing I've dealt with at work is ... persuading funders and commissioners that men's health is worth investing in.
The biggest challenge facing the NHS is ... governments' almost total failure to address the social determinants of health – including income, gender and race inequalities.
The people I work with are ... increasingly anxious about whether they can do the job expected of them.
I do what I do because ... the evidence shows that we can do much, much better for men.
Sometimes people think that I ... should join some others involved in men's issues in blaming feminism for men's problems. I actually see feminism as part of the solution, not least because it shows us that gender roles are not fixed. Just as men have become more involved fathers, they can also take better care of their own health.
Right now I want to ... convince the UK government to introduce HPV vaccinations for boys to reduce their cancer risk, encourage European health organisations to address men's ineffective use of most primary care services, and to persuade global public health organisations like the World Health Organisation that they should address men's, as well as women's, health.
At work I am always learning that ... men don't just cause problems for society – they also face problems and help to solve them.
The one thing always on my mind at work is ... should I tweet about that?
If I could go back 10 years and meet my former self I'd tell him ... not to waste so much time tweeting.
If I could meet my future self I'd expect him to be ... still trying to make a difference for men, whether or not that's about health.
What is the best part of your job? When I'm making the case for men's health and seeing people comprehend the problem for the first time. One statistic that never fails to make an impact is that men are more likely to be overweight than women – most people think it's the other way around.
What is the worst part of your job? Hearing people talk about men's health as if it's just about prostates and penises – it really is much more than urology. Obesity, heart disease, diabetes, mental health, all the cancers men can get, use of primary care services – these are the major men's health issues.
What makes you smile? People in meetings using phrases like "going forward", "ticks all the boxes" and "no brainer" without irony.
What keeps you awake at night? My cats, when I forget to lock them in the kitchen.
This article is published by Guardian Professional. Join the Healthcare Professionals Network to receive regular emails and exclusive offers.
Quality for patients at home or in the community is becoming a reality, but success depends on investment in staff and services
It is well known that there is growing pressure on the health and social care system. There is a rising and ageing population that, if our care system does not change, will require an additional 13,500 hospital beds to soak up demand.
There is already a tendency for patients to end up in hospital when they could be cared for elsewhere. The ambition to move care closer to home is not new – it has been our ultimate goal for many years – but major change is needed to achieve it.
A great deal rests on community services: they could transform chronic disease management, support reductions in the number of people admitted to hospital and how long they stay there, and help primary care meet a growing demand.
Government initiatives, including the grandiosely-named 2008 'Transforming community services programme', have all failed to achieve this aim, remaining largely concerned with the structure and ownership of community organisations while the services themselves were neglected.
There is now an emerging consensus about what we need to do next, and there are some common features to the new service models being developed. The first step is to reduce complexity of services. Confusing, overlapping and unclear provision, with many professional silos working in isolation, needs to be unravelled and multi-disciplinary teams with mental health and social workers created.
We also need to wrap services around primary care practices and natural local communities. A common problem is the lack of contact between community staff and GP practices. They will both work more effectively if this is reversed. In some areas social services have changed their team structures to match this.
To make the most of these stronger ties, teams need support from specialist medical and nursing experts. This implies some changes in how consultants work – particularly among those caring for older people and patients with chronic conditions.
Another key step is to create services that offer an alternative to hospital stay, and that can respond more quickly than many currently do. At least 20% of admissions and half of days in hospital can be cared for in other settings, including the home. Where new models are developing, community care teams are intervening quickly to prevent admissions, diverting patients away from A&E or working with hospital wards to speed up patient discharge.
GP services are also changing, with more practices working together in federations and networks and sharing records between health professionals and social care teams. Together, these changes should provide better care, especially for people living nursing or residential homes.
A shared care plan for each patient that is available to the ambulance service can also help prevent trips to hospital.
To be successful, howerver, there will need to be significant investment in developing the workforce and dealing with the impending shortage of community nurses. Hospitals will also need to adapt and find new ways to work with these more responsive providers.
Most importantly, all these services will need to find ways to increase their reach – working with the voluntary sector and local government to harness the power of the wider community to help keep people connected and supported.
Nigel Edwards is a senior fellow at The King's Fund
This article is published by Guardian Professional. Join the Healthcare Professionals Network to receive regular emails and exclusive offersNigel Edwards
Large areas of rural England could be left without any GP services for local residents as a result of cuts in national funding
About 100 GP practices could be forced to close because of cuts in national funding, leaving patients in rural areas without a GP, doctors' leaders have warned.
Changes to how practices are paid mean some could no longer be viable, despite the fact that some "provide vital services to thousands of rural patients", the British Medical Association (BMA) said.
It warned that large areas of rural England could be left with no GP practice for residents.
The government has decided to phase out a funding arrangement called the Minimum Practice Income Guarantee (MPIG) over a seven-year period, beginning in April.
MPIG means many smaller GP practices are guaranteed a minimum level of funding that is not dependent on the number of patients on their list.
NHS England has published an anonymised list of 98 "outlier" practices that could lose more than £3 per patient per year. Some practices on the list will lose more than £100 per patient per year, while others will lose £20 or £30 per patient.
The BMA said that in addition to the 98, there were a "significant number" of other practices that would be severely affected.
Dr Chaand Nagpaul, chair of the BMA's GP committee, said: "The government has seriously misjudged the potential impact of its funding changes, especially on rural GP services.
"It is likely that a few hundred practices will lose noticeable levels of funding, with 98 practices identified by NHS England as being at serious risk from severe cuts in their financial support that could threaten their ability to remain open.
"This comes at a time when GP practices are already under pressure from rising workload and declines in overall levels of funding.
"The government has not confirmed where these practices are or the extent of their financial difficulty, however some will be smaller GP practices in rural communities with comparatively small numbers of patients registered with them.
"These GPs provide vital services to patients in areas where accessing healthcare is already not easy because of the large distances patients have to travel to get to their local NHS services. If these practices were to close it could leave large geographical areas without a nearby GP practice.
"The situation has not been helped by NHS England's decision to devolve responsibility for this issue to local NHS managers without a framework on how these GP practices should be supported. We are without a national plan of how to tackle this problem and safeguard GP services.
"Ministers have to get a grip on this problem urgently, given these funding reductions are just weeks away from being implemented. We need to ensure no practice closes and that there is a co-ordinated approach to deal with this issue."
Dr Katharina Frey, who runs a rural practice in Cumbria, said: "My practice is a very small one that cares for just under 1,000 patients in a rural south Cumbrian area.
"We have for many years provided a real family-orientated service for patients and I believe we are a really vital service for our local community.
"We are under real financial pressure already and can't, because of the current funding climate, afford to employ a practice nurse.
"We are also having to think very carefully about how we replace senior staff. This situation will become even more pressurised when we lose the MPIG support that currently accounts for around a third of our current core funding.
"We are already working at full capacity with declining resources – I just don't know how we will cope with this additional financial blow."
An NHS England spokesman said: "NHS England is committed to making sure patients have access to high-quality GP services wherever they live and the GPs are properly funded to deliver these services.
"MPIG is not an equitable way of funding practices, which is why we are supporting its phased withdrawal. We believe it is fairer to allocate funds based on the numbers of patients practices serve and the health needs of those patients.
"We have looked very carefully at how the changes to MPIG, together with other changes to the general medical services contract, will impact on practices and we estimate that the majority will gain extra funding as a result.
"We also know that some practices will lose funding and we have asked our area teams to work with them to see how they can be supported. It may be that an alternative arrangement may be appropriate.
"This decision will be made by area teams after a full assessment of all the local circumstances."