NHS health data sharing project scrapped

The Department of Health in England is scrapping its controversial data sharing project – known as Care.data.

The Department of Health in England is scrapping its controversial data sharing project - known as Care.data.The programme, which was due to launch in 2014, faced widespread criticism – including fears the public had been left in the dark about it.

The announcement comes as Dame Fiona Caldicott and the Care Quality Commission published two reviews on data security in English healthcare.

Their reports put forward a series of proposals to safeguard data in the NHS:

  • They call for stronger government sanctions for malicious or intentional data breaches, together with tougher criminal sanctions against those who use any anonymised data to re-identify individuals.
  • Meanwhile, out of date computer software and hardware should be replaced urgently, they say.
  • The reviews recommend an opt-out system so patients can say no to confidential or personal health data being used for anything beyond their direct care.
  • But this could be overridden for mandatory requirements such as fraud investigations or situations of public interest such as epidemics, they suggest.
  • And patients could give explicit consent for specific research studies, even if they had opted-out.

Responding in a written statement to Parliament, the Department of Health said it has launched a public consultation on the option of opt-outs, alongside 10 security standards that Dame Fiona suggests NHS organisations must meet.

Officials also say they support stronger criminal sanctions for misuse of anonymised data and are working with suppliers to ensure IT systems are up-to-date.

Meanwhile, the Department of Health said though it had taken the decision to close the Care.data programme it was “committed to realising the benefits of sharing information”.

The Care.data project, led NHS England, together with the Health and Social Care Information Centre, was designed to bring health and social care information from different settings together to see what was working well and what could be done better.

It was due to launch two years ago, but was paused after concerns a public information campaign explaining its use was not clear enough and did not reach everyone.

Whilst Health Direct is pleased that this discredited IT system is being closed, one wonders with the Chilcott enquiry and Wales football game dominating the news agenda whether yesterday was a good day to bury bad news.

Many NHS hospital patients complain of lack of dignity

A fifth of people in hospital in England are not always treated with respect and dignity according to new research.

A fifth of people in hospital in England are not always treated with respect and dignityAnalysis of the 2012 poll has found that poor care was more likely to be experienced by those aged over 80. It also found that more than a third of patients who need help at mealtimes did not receive enough assistance.

Age UK, which helped to advise the researchers, said there had been “remarkably little change” over time in the care experienced by older patients.

The report, carried out by the Centre for Analysis of Social Exclusion at the LSE, found that poor or inconsistent care was more likely to be experienced by women as well as the over-80s.

The risks were also higher for those with a long-standing illness or disability like deafness or blindness, with those in hospital for a long period, or who stayed in three or more wards, at an even greater risk.

The report was compiled using evidence from the Adult Inpatient Survey 2012, which covers people aged 16 or above who stayed in hospital for at least one night.

According to the report: “There was a widespread and systematic pattern of inconsistent or poor standards of care during hospital stays in England in 2012.”

“Patient experiences of inconsistent or poor standards of dignity and help with eating do not appear to be limited to isolated ‘outlier’ providers. Rather, this appears to be a significant general problem affecting the vast majority of NHS acute hospital trusts.”

The researchers found 23% of patients reported experiencing poor or inconsistent standards of dignity and respect, the equivalent to 2.8 million people a year, of whom a million would be aged 65 and over.

They also found that a quarter of all respondents said they needed help with eating during their hospital stay, amounting to just under 3.5 million patients a year.

Of those who needed help with eating, 38% said they only sometimes, or never, received enough help from staff – equivalent to 1.3 million people a year, and 640,000 aged 65 and over.

Age UK charity director Caroline Abrahams said: “It must be recognised that the data this research is based on is two years old now and that the newest figures suggest some welcome improvement, especially as regards older people’s experiences of dignity, but this sobering report certainly shows that hospitals need to redouble their efforts.”

“Above all it is really worrying, if perhaps not altogether surprising, that the more vulnerable an older person is, the greater their risk of not being treated as we would all wish for ourselves or our loved ones.”

“Turning this situation around ought to be a top priority and no hospital can afford to be complacent.”

Elderly being trapped in hospital warns Age UK

Elderly people are being “trapped” in English hospitals in ever greater numbers as there is nowhere else for them to go.

Elderly people are being Age UK said it was bad for patients’ health, a waste of NHS resources and a huge cost to taxpayers. Its analysis shows patients spent a total of nearly 2.5 million days stuck in a hospital over the past five years.

Age UK says there is a crisis in social care ranging from a shortage of care home places to a lack of district nurses to help people in their own home.

It says the situation has got worse and the number of people being kept in hospital in 2014-15 increased by 19% on the previous year.

The charity’s analysis of NHS England data for the last financial year showed the days spent stuck in hospital included:

  • 174,000 waiting for a residential home place
  • 216,000 waiting for a nursing home place
  • 206,000 waiting for help from social care workers or district nurses to get people back into their own home
  • 41,400 waiting for ramps or stairlifts to be installed into patients’ homes.

Caroline Abrahams, from Age UK, said: “These figures show that year on year, older people are being trapped in hospital in ever greater numbers because of a delayed assessment, care home place, home care package or home adaptation.

“Without decent social care when discharged, whether to their own home or to a care home, hospital stays are often much longer than they need to be and older people are more likely to be readmitted because their recovery stalls.”

She said this was a waste of NHS resources because it cost nearly £2,000 per week for an NHS bed in comparison to around £560 per week in residential care.

“Everyone agrees the way to go is to integrate social care and health much more effectively, but unfortunately our report shows we’ve got a long way to go before really the reality lives up to the rhetoric,” she said .

“And if we can’t get it right for such an important group of people, older people stuck in hospital waiting to get out, really we have to redouble our efforts and do much better.”

End Of Life care letting people down

Thousands of dying patients are being let down by poor End Of Life care provision according to the Parliamentary Health Service Ombudsman (PHSO)

End Of Life care letting people downThe health ombudsman’s report detailed “tragic” cases where people’s suffering could have been avoided or lessened.

The Parliamentary and Health Service Ombudsman has investigated 265 complaints about end-of-life care in the past four years, upholding just over half of them.

Its Dying Without Dignity report said it had found too many instances of poor communication, along with poor pain management and inadequate out-of-hours services.

One mother told the ombudsman how she had had to call an A&E doctor to come and give her son more pain relief because staff on the palliative care ward he had been on had failed to respond to their requests.

In another case, a 67-year-old man’s family learned of his terminal cancer diagnosis through a hospital note – before he knew himself. This “failed every principle of established good practice in breaking bad news”, the report said.

“There was an avoidable delay in making a diagnosis,” it added. “An earlier diagnosis would have meant opportunities for better palliative care.”

Ombudsman Julie Mellor said that the report made “very harrowing reading”.

She also urged the NHS to learn lessons from the report, adding: “Our casework shows that too many people are dying without dignity.

“Our investigations have found that patients have spent their last days in unnecessary pain, people have wrongly been denied their wish to die at home, and that poor communication between NHS staff and families has meant that people were unable to say goodbye to their loved ones.”

Macmillan Cancer Support chief executive Lynda Thomas said: “The report cites heartbreaking examples of a lack of choice at the end of life that are totally unacceptable.

“If we are to improve the current situation, we will have to see a dramatic improvement in co-ordination of care, and greater integration of health and social care.”

The chief inspector of hospitals at the Care Quality Commission, Prof Sir Mike Richards, said the organisation had seen examples of excellent end-of-life care, but also instances where it had not been given enough priority.

He said the CQC would continue to highlight those services that were failing.

Health Direct laments “These are appalling cases – everyone deserves good quality care at every stage of ones life- but at the very end of the life dignity should be paramount.”

Hospital charges to rise for non EU patients

Visitors from outside the EU who receive treatment in NHS hospitals in England are now charged 150% of the cost.

Hospital charges to rise for non EU patientsThe charges however only apply to non EU citizens settling in the UK for longer than six months. The new rules from the Department of Health came into force on 6 April.

However primary care and Accident and Emergency treatment will continue to remain free.

Permanent residents of 32 European countries qualify for NHS treatment, which is then billed to their country of residence, but this new ruling applies to foreign migrants or visitors based in other countries, mainly those outside the EU.

These patients can be treated in an NHS hospital but are expected to repay the cost of most procedures afterwards.

But up to now, the DoH has only sought to reclaim the actual costs, without adding any extra charges.  The DoH hopes the changes will help it recoup up to £500 million a year by 2017-18.

The new guidelines do not require patients on trolleys in hospitals to produce passports before getting access to urgent care. Nor do they apply to accident and emergency or a visit to a GP.

What is covered is ongoing treatment on the NHS after an initial diagnosis or referral – for example an outpatient appointment.

The Department of Health is incentivising hospitals to be more vigilant in checking patient credentials by allowing them to charge more for treatment of people “not ordinarily resident” in the UK.

The department can recoup those costs from the patient’s member state if they are from the European Economic Area.

In the paperwork filled in by the patient before the appointment they will be asked for proof they are “ordinarily resident”.

This could be a utility bill, national insurance number or passport details. Some hospitals were doing this already but many were not.

The guidelines are designed to increase the chances that the treatment costs for a non UK resident can be recovered. Critics may ask why it has taken so long for the initiative to be launched.

The charges are based on the standard tariff for a range of procedures, ranging from about £1,860 for cataract surgery to about £8,570 for a hip replacement.

Similar charges can be imposed by the NHS in Northern Ireland, Scotland and Wales for hospital care received by non-EU residents.

Patients using hospital services have been required to show their passports and other immigration documents if their UK residence status was in doubt.

The “health surcharge” on visa applications for non-EU citizens comprises an annual fee of £200-a-year, which is reduced to £150 for students.

Certain individuals, such as Australian and New Zealand nationals, are exempt from the surcharge.

And non-EU citizens who are lawfully entitled to reside in the UK and usually live in the country will be entitled to free NHS care as they are now.

New government should boost nurse numbers

Immediate action must be taken by the next government to increase the number of NHS nurses, a report has warned.

New government should boost nurse numbersThe Royal College of Nursing (RCN) said there were fewer nurses now than in 2010 if midwives, health visitors and school nurses were not included.

It said government cuts to nurse training places in 2010 were a significant factor in the shortage.

The Conservatives and Liberal Democrats said they were committed to investing £8 billion each year in the NHS.

The RCN said that while the government claimed the number of nursing posts has increased the actual headcount figure for nurses fell from 317,370 in May 2010 to 315,525 in December 2014.

It described this as “remarkable” given the continued increase in demand for the NHS.

While 50,000 people applied to become nurses last year, there were only 21,000 places – meaning there is no shortage of people wanting to do the job, the RCN said in its report.

It said cuts the coalition government made to student nursing commissions in 2010 led to a reduction of 3,375 places.

The report said that as it takes three years for student nurses to qualify, these cuts are impacting on the supply of nurses right now.

Dr Peter Carter, chief executive and general secretary of the RCN, said: “We warned that cutting the workforce numbers to fund the NHS reorganisation and to find the efficiency savings was the wrong course to take.

“The cuts were so severe that we are only just catching up with where we were five years ago.  Many areas, like district nursing and mental health, are even worse off. While the health service has spent the last five years running on the spot, demand has continued to increase.”

“Whoever forms the next government must learn from this report and take immediate action to grow the nursing workforce, and ensure it can keep up with demand with a sustainable and long term plan.”

The report also said the community nursing workforce had been cut by more than 3,300, despite NHS plans to move care from hospitals to the community.

From May 2010 to December 2014 there has been a 28% reduction in the number of specialist district nurses, a loss of 2,168 posts across England.

A reliance on using agency nurses means that the NHS would have spent an estimated £980 million on them by the end of the 2014/15 financial year, the RCN said.

As with GPs, the nursing workforce is ageing, with around 45% being over 45, the RCN added.

Pharmacists could help ease GP pressures

An army of pharmacists could step in to help treat patients at GP practices across England leading health professionals plan.

Pharmacists could help ease GP pressuresThe proposals focus on pharmacists seeing patients with common ailments directly – not on setting up shops within surgeries.

Pharmacists would provide health advice and be able to prescribe medication once extra training had been completed.

Charities welcomed the move but say patient safety must be a priority.

NHS England officials said the idea complemented their plan to increase staffing in GP surgeries. But it is not yet clear whether they will push the proposals forward.

The plans, aimed at every practice in England, have been put forward by the Royal College of General Practice (RCGP) and Royal Pharmaceutical Society (RPS).

It could mean when patients call up their surgeries they are offered an appointment with a pharmacist, general practitioner or practice nurse.

Those who opt to see the pharmacist could get advice about their symptoms and discuss troubling side-effects of medication, as well as getting help with their repeat prescriptions.

People with long term conditions are likely to benefit the most under the plans – those on multiple medications could get help streamlining their daily drugs.

In a handful of practices pharmacists already help with the management of conditions such as diabetes and asthma, for example, helping patients get annual checks.

Under the proposals more practices could do this. And with additional training some pharmacists would prescribe commonly used medicines such as antibiotics.

Any patient who still needed advice from a doctor could still be seen by their GP.

GP and pharmacist leaders say the move is needed as practices face staff shortages and are struggling to meet the demands of an ageing population.

The RCGP predicts that on some 67 million occasions this year, patients will have to wait more than one week to get an appointment.

In contrast, there is currently an over-supply of skilled pharmacists who could ease this burden experts argue.

Initial pharmacist training lasts one year longer than basic nursing qualifications and one year less than medical school for doctors.

Dr Maureen Baker, chairwoman of the RCGP, said: “Even if we were to get an urgent influx of extra funding and more GPs, we could not turn around the situation overnight due to the length of time it takes to train a GP.

“Yet we already have a ‘hidden army’ of highly-trained pharmacists who could provide a solution.

“This isn’t about having a pharmacy premises within a surgery, but about making full use of the pharmacist’s clinical skills to help patients and the over-stretched GP workforce.”

David Branford, of the RPS, said: “Pharmacists can consult with and treat patients directly, relieving GPs of casework and enabling them to focus their skills where they are most needed, for example on diagnosing and treating patients with complex conditions.

“Pharmacists can advise other professionals about medicines, resolve problems with prescriptions and reduce prescribing errors.”

These types of partnership already exist in a handful of practices but experts hope the plan will eventually be rolled out across the UK.

Katherine Murphy, of the Patients Association said: “Any action that can, at the very least, ease the problem is to be welcomed and this plan for doctors and pharmacists to work together is an innovative step in the right direction.

“Of course, there must always be concerns that the pharmacists who undertake this work have the relevant skills and qualifications to treat patients, and with care.”

War on drugs is unwinnable

Four decades after President Nixon declared a “war on drugs”, US states have legalised the sale of marijuana and most Americans support legalisation.

War on drugs is unwinnableAcross the world, drug laws are being relaxed, from Uruguay to Portugal, Jamaica and the Czech Republic.

After many years prosecuting drugs offences as an Assistant US Attorney, growing frustration with the approach inspire

The US prison system is a disaster. There’s virtually no rehabilitation. Locking up low level individuals who have drug problems or who have limited other options is not effective, because they go to jail, they come out, they get involved with drugs again, and they go right back to it.

The war itself is at a draw- which will be maintained indefinitely unless there’s a dramatic change in our approach to drugs and drug trafficking.

Former Colombian President Cesar Gaviria worked on the Global Commission on Drug Policy report in 2011 which called on states to decriminalise drugs.

“Our recommendation is regulation for everything. That’s what Portugal did.

“If you look at the last 50 years, what has been done? In the US, 600,000 people in jail, £27 billion of spending a year. The highest rates of consumption of the whole world. You have to say that it doesn’t work. It’s a failed policy, and public opinion knows that.

“Ten years ago it was unthinkable that the US would move massively to the legalisation of cannabis. That taboo has been broken. In the US, a majority of people are talking about approving legalisation of marijuana.”

He cites the example of Uruguay, the first country to legalise the marijuana trade.

“All Latin America’s looking at Uruguay. It’s a country that also looks how to deal with the production, with the supply of the marijuana that is in the state hands. I don’t expect any major set back of the policy that the Uruguayans have put in place.”

“From the beginning in 1961, the objective of the UN Conventions has been to live in a world free of drugs, but it’s a utopia. It’s something unreachable. It’s not to recognise human nature.”

Professor Peter Reuter from the school of public policy at the University of Maryland has been a leading academic in the field of drugs policy for decades.

“The need for national leaders to stand up and talk about the scourge of drugs, and signal to the population that being tough on drugs was a priority was an important part of the war itself.

“There’s going to be less and less of that. I think there’s going to be a change both in tone and substance, so the ‘war on drugs’ will become a less and less plausible metaphor for describing policy. I think it’s going to be a public health rhetoric for the foreseeable future.

“I do believe that we have in a sense had an experiment with trying to be very aggressive about controlling drugs through use of prohibition. And we have a sense that that did not work well. And so we’re now trying to find better ways of managing the problem, and I think that’s welcome.

“If you look at the number of people who are in prison for drug offences, at least in the US, that’s an important indicator of the change in real policy, and those numbers are starting to go down. Not dramatically, but they are definitely going down, and many states are making changes that are likely to accelerate that decline.”

As drug laws soften he argues the question of regulation becomes key, as happened when gambling was legalised:

“Lottery play was always seen as a bad thing, you legalised it because you wanted to take money away from organised crime, but the result was that the state lotteries became the most aggressive promoters.

“You have slogans like ‘Why be a mug and work when you can play the lottery and win easily?’, just the kind of slogan you’d associate with the worst commercial promotion, but done by the state.

“Alcohol is still heavily promoted, and it’s promoted in states that have state liquor monopolies, and we’ve only recently really been able to restrict smoking promotions.

“You cannot with a straight face say that marijuana legalisation won’t lead to more marijuana dependence.

“Choose your problem. There is no solution. Use of psychoactive drugs is a social problem like a whole lot of other social problems. We manage it. And we may manage it better or worse, but the notion that we solve a problem is simplistic. We’re simply managing a problem.”

UK air pollution causing deadly public health crisis

The Environmental Audit Committee argues air pollution is a “public health crisis” causing nearly as many deaths as smoking.

UK air pollution causing deadly public health crisisThe committee suggested a scrappage scheme for diesel cars to cut emissions as there are an estimated 29,000 deaths annually in the UK from air pollution.

Nitrogen dioxide is known to cause inflammation of the airways, reduce lung function and exacerbate asthma. Particulate matter – tiny invisible specks of mineral dust, carbon and other chemicals – are linked to heart and lung diseases as well as cancer.

Some particulate matter lodges in the lungs, while the finest particles can enter the bloodstream, risking damage elsewhere in the body.

Joan Walley, the committee chairwoman, said “There is a public health crisis in terms of poor air quality. There are nearly as many deaths now caused by air pollution as there are from smoking, so the main thing is we stop a new generation of children being exposed.”

She said government “should make it impossible” for new schools, care home or health clinics to be built in pollution hotspots. She added that “well over a thousand” schools were already near major roads and that it “made sound economic sense” to filter the air coming into the buildings.

The committee’s report says traffic is responsible for 42% of carbon monoxide, 46% of nitrogen oxides and 26% of particulate matter pollution.

It said government had promoted diesel vehicles as they produced less of the greenhouse gas carbon dioxide. But the committee said diesel was now seen as “the most significant driver of air pollution in our cities”.

They called for government to pay for diesel drivers to upgrade their engines or for a national scrappage scheme to take the most polluting vehicles off the road.

Other measures suggested include:

  • The Met Office and BBC producing high pollution forecasts alongside ones for pollen and UV.
  • A national plan for “low emission zones” to tackle heavily polluting vehicles, like the one in London.
  • Changes to fuel duty to encourage low nitrogen dioxide vehicles as well as low carbon dioxide.
  • Financial incentives for alternative fuels.
  • Encourage walking and cycling as the “ultimate low emission” option

Dr Ian Mudway, a lecturer in respiratory toxicology at King’s College London, told the BBC: “The evidence is there. The 29,000 figure is very solid, so really it is a case of acting.

“But it is a strange one, because it’s their third [report] in five years and it is an attempt to get the government to do anything.”

The British Lung Foundation said the recommendations “may seem drastic”, but air pollution was so bad they were necessary “to protect the nation’s health.  Our dirty air will simply not clean itself, and this issue is one that will, without the government’s intervention, continue to impact on current and future generations,” said Dr Penny Woods, the charity’s chief executive.

Asthma UK said air pollution increased the risk of a life-threatening attack and “urgent and concerted action” was needed to bring pollution levels down.

Chief executive Kay Boycott said: “In the short term some of the measures recommended in this report, such as the publicising of high air pollution forecasts, could help people with asthma know in advance if they should seek advice from their GP or asthma nurse.”

Simon Gillespie, the chief executive of the British Heart Foundation, said: “The government cannot continue to ignore this issue. Enough is enough. The government must act on these recommendations quickly if we are to improve the quality of the air we breathe and protect the nation’s heart health.”

Seasonal Affective Disorder- SAD winter blues

Seasonal Affective Disorder (SAD) describes a type of depression with a seasonal pattern, usually occurring during winter.

Seasonal Affective Disorder- SAD winter bluesA lack of light is thought to affect the part of the brain that rules sleep, appetite, sex drive, mood and activity levels. Patients experience lethargy and a craving for sugary snacks.

In 1984 psychiatrist Norman Rosenthal first used a term that changed the way people thought about winter. He included the term in a paper he co-wrote following a move from the warm climate of Johannesburg in South Africa to the north-eastern US, with its more severe winters.

“It took about three years of seeing the winters alternating with the summers,” Rosenthal, who lectures at Georgetown University in Washington, says. “It was a sort of given that people were grouchy in the winter, not so happy.”

But the work of Rosenthal and others established that there was more to it than that for some people. The cultural idea of many people being less happy in winter was not to obscure the fact that for a smaller group of people something more serious was happening. “It becomes a medical thing when it has consequences in people’s lives, like not being able to get to work or their quality of life going down the drain,” says Rosenthal.

SAD has been accepted as a condition by many. The NHS offers advice, And it has also gained significant currency in popular culture – with the term being widely used by laymen.

In the UK the term was first used by the Times in 1988, in a piece highlighting a link between afternoon shift workers and a lack of daylight. Since then it has gradually filtered into common parlance. According to Google Trends the term is still much more commonly searched for in Canada and the US, with the UK third.

Rosenthal admits the acronym, which suggests the kind of feeling sufferers get, was chosen to make a maximum impact on the media. It seemed to work.

Rosenthal suggests that 6% of people in the US suffer from the most acute form of SAD and that another 14% get winter blues. A study found the severest form affected just 1.5% in the southern state of Florida, which averages seven hours of sunshine a day even in winter, rising to almost 10% in the northern state of New Hampshire, which gets just four hours daily in November and December.

Rosenthal advocates the use of electric lights, among other methods, to offset the effects of SAD, including in the UK, whose population spends a “long time in gloom” in winter, as much because of large amounts of cloud as the shortness of the days.

Light therapy is long established, the ancient Greek physician Hippocrates advocating healing properties in exposure to the sun. From the late 1800s heliotherapy, or phototherapy, became popular. Some tuberculosis-infected children from slums, where little sunlight was available, were taken to retreats where they could spend as much time outdoors as possible.

Light treatment has been used for other ailments. In 1903 Faroe Islands physician Niels Ryberg Finsen was awarded the Nobel Prize for inventing an ultraviolet lamp for tuberculosis of the skin.

But in 2009 the National Institute for Health and Care Excellence ruled there wasn’t enough evidence to justify the NHS in England spending money on this type of treatment for depression. The guideline is currently under review.

Rosenthal says a lack of direction from above means doctors are not asking patients the right questions, such as whether the symptoms they describe are seasonal or year-round. “I’ve just come to terms with the limits of my ability to persuade people about SAD,” he says. “People have to find out about it to some extent on their own.”