Stalled – the plan to share NHS patients’ confidential information with big business

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Freudian slip: The BBC’s article on the care.data delay was accompanied by this picture of a hand drawing on a diagram of a pair of breasts. Is this a tacit implication that the Department of Health has boobed? (Sorry, ladies) [Image: BBC]

A plan to sell the confidential medical information of every NHS patient in England has been put on hold after it caused a public outcry.

The care.data system, also called variously the General Patient Extraction Service (GPES) or the Health and Social Care Information Centre, was dreamed up as a money-spinning device by Jeremy Hunt’s Department of Health.

The aim is that, if you are an NHS patient in England, your GP will be forced to provide your confidential records, showing every medical condition you have ever had and providing intimate details of your current state of health, to a huge national database.

From there, your information may be sold on to private healthcare and pharmaceutical companies for “research”. A new proposal backed by NHS England (a body set up largely to support the increasing privatisation of the NHS, if my information is correct) would give non-NHS bodies including private companies the right to ask for access to the data.

The government has said the information would be “pseudonymised”, in an attempt to reassure you that you cannot be identified from the information to be provided to outside organisations. This is not true, and in fact it will be entirely possible to trace your medical information back to you.

The government claims the information will help experts assess diseases, examine the effects of new drugs and identify infection outbreaks, while also monitoring the performance of the NHS.

In fact, it seems far more likely that this is a widespread invasion of privacy, with the information likely to be used (for example) to sell you health insurance that you should not need.

We are told that NHS England organised a mass mailing to every household in England, explaining its version of what the planned system will do – but a BBC poll of 860 people last week found that fewer than one-third of them could recall receiving it.

Concern that people are likely to end up allowing their information to go into commercial hands without ever knowing about it has led to the scheme being halted – for the time being.

NHS England has accepted that its communications campaign must be “improved”, although we do not yet know how. A propaganda campaign on TV and radio seems likely.

Every NHS patient in England has the right to opt out of the data sharing scheme, and many have already chosen to do so. You can do it right now, using a form designed by the medConfidential website.

While NHS England and the Department of Health will continue trying to justify this scheme, there is no justification for selling your private information to commercial organisations.

It is to be hoped that this six-month pause will end with the abandonment of the scheme.

If the organisations that want the information genuinely intend to use it for humanitarian concerns, it would be fully anonymised and they would not be buying it.

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Are you happy for big business to have your confidential medical records?

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Do you live in England? Are you an NHS patient? Have you realised that your Conservative-led Coalition government is selling your medical records to private healthcare and pharmaceutical companies? Do you know that these ‘anonymised’ records are in fact nothing of the sort, and anyone buying your details will be able to identify you?

Do you want to do something about it? It isn’t too late.

Vox Political warned last September that Health Secretary Jeremy Hunt is planning to sell records to “approved” private companies and also universities – that’s sell, mark you, to make money for the government.

The system was called the General Patient Extraction Service (GPES) – although exactly who it serves is entirely up for debate. It seems to have metamorphosed into the Health and Social Care Information Centre by now, but the purpose remains the same. You may also see it described as the care.data scheme.

Hunt wants us to believe that the information will be valuable for medical research and screening for common diseases.

In fact, the information could be used by private health companies as evidence of failures by the National Health Service, and could help those companies undercut NHS bids to continue running those services – this would accelerate the privatisation that nobody wanted.

This week, The Independent reminded us all that the system that will sell off your information will go live later this year.

The article warned: “Companies like Bupa or Virgin that already hold data on UK patients may be able to use the new anonymous data available from the centre to precisely identify where it has come from, according to campaigners.

Phil Booth, co-ordinator at patient pressure group medConfidential, said: “The scheme is deliberately designed so that ‘pseudonymised’ data – information that can be re-identified by anyone who already holds information about you – can be passed on to ‘customers’ of the information centre, with no independent scrutiny and without even notifying patients. It’s a disaster just waiting to happen.”

The information for sale to profit-making firms will contain NHS numbers, date of birth, postcode, ethnicity and gender.

Patients can opt out of the system by contacting their family doctor, but medConfidential has designed a form to make it easier.

On its ‘How to opt out’ page, the organisation writes: “Under changes to legislation, your GP can now be required to upload personal and identifiable information from the medical record of every patient in England to central servers at the Health and Social Care Information Centre. Once this information leaves your GP practice, your doctor will no longer be in control of what data is passed on or to whom.

“This information will include diagnoses, investigations, treatments and referrals as well as other things you may have shared with your doctor including your weight, alcohol consumption, smoking and family history. Each piece of information will be identifiable as it will be uploaded with your NHS number, date of birth, post code, gender and ethnicity.

“NHS England – the body now in charge of commissioning primary care services across England – will manage and use the information extracted by the Health and Social Care Information Centre for a range of purposes, none of which are to do with your direct medical care. Though the official leaflets talk a great deal about research, these ‘secondary uses’ for which your data may be used include patient-level tracking and monitoring, audit, business planning and contract management.

“In September 2013, NHS England applied to pass on your information in a form it admits “could be considered identifiable if published” to a whole range of organisations that include – but are not limited to – research bodies, universities, think tanks, “information intermediaries”, charities and private companies.

“Though you may be told that any data passed on will be ‘anonymised’, no guarantees can be given as to future re-identification – indeed information is to be treated so that it can be linked to other data at patient level – and NHS England has already been given legal exemptions to pass identifiable data across a range of regional processing centres, local area teams and commissioning bodies that came into force on April 1st 2013. The Health and Social Care Information Centre already provides access to patient data, some in identifiable form, to a range of ‘customers’ outside the NHS, including private companies.”

The opt-out form is downloadable from the medConfidential web page, along with a form letter in various formats, allowing patients to opt out themselves, their children and any adults for whom they are responsible.

This is a gross abuse of patient confidentiality for the purpose of commercial gain.

Don’t let it happen to you.

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Coalition policy success: 80,000 children homeless for Christmas

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000, 80, accommodation, affordable, arrear, B&B, bathroom, bed, bedroom tax, benefit, benefit cap, benefits, breakfast, bubble, Campbell Robb, children, Christmas, Coalition, cocaine, Conservative, cooker, council tax, dealing, debt, Democrat, DHP, diet, disaster, discretionary housing payment, drug, Durham County Council, duties, duty, electorally damaging, emergency, flat, food, fridge, George Osborne, government, health, help to buy, homeless, housing, human, kitchen, Kris Hopkins, landlord, Lib Dem, Liberal, meal, Mike Sivier, mikesivier, mortgage, offence, people, Pickles Poll Tax, play, policy, politics, private, reduction, relief, rent, scheme, sex, shameful, share, Shelter, shocking, short-term, social cleansing, social security, statutory, success, temporary, toilet, Tories, Tory, unemployment, violence, Vox Political, welfare, work

Tory politicians don’t care and Liberal Democrats don’t have any power – that’s why 80,000 children are being housed in temporary accommodation, alongside drug users and enduring threats of violence, as reported by Shelter today.

The government’s own figures show 2,090 families living in bed and breakfasts – an increase of eight per cent on 2012 and the largest number in 10 years, according to The Guardian. Of these, 760 have been living in B&Bs longer than the legal six-week limit – a 10 per cent increase on last year.

More than 43,000 other homeless households with children are in other emergency accommodation – usually privately-rented short-term flats, which are expensive. This is an increase of nine per cent on last year.

To put this into context, a Labour government commitment to halve the number of families in this kind of emergency accommodation meant the total fell between 2005 and 2010 – but it has been rising again since June 2011.

This is a human disaster created by the Coalition government.

Most families interviewed by the charity said they felt unsafe, with one child directly threatened by a man after an argument over a shared bathroom. Almost half said their children had witnessed incidents such as sexual offences, drug use and dealing.

One mother of three said: “One of the reasons we left was one of the residents trying to sell us crack cocaine.”

Most of the 25 families Shelter interviewed lived in one room; half said the children were sharing beds with parents or siblings and the family was sharing kitchen facilities with others. All but three said it was hard to find a safe place for their children to play. Three families had no cooking facilities and one reported sharing a cooker and fridge with 22 other people.

More than half had to share a bathroom or toilet with strangers, with 10 families sharing with seven or more other people; two-thirds had no table to eat on, and schoolchildren were finding it hard to do homework.

And their health is suffering: “It’s so hard to give him a balanced diet as it’s impossible to make proper meals here, let alone a Christmas dinner. He’s getting really pale and is so tired all the time. He gets so scared but it’s difficult when I’m scared myself. This is no place for a child to live,” said a mother in a Hounslow B&B.

“This shouldn’t be happening in 21st century Britain,” said Shelter’s chief executive, Campbell Robb, who described the charity’s findings as “shocking” and the conditions forced on families as “shameful”.

He said: “No child should be homeless, let alone 80,000. But tragically, with more people struggling to make ends meet and homelessness on the rise, we’re bracing ourselves for an increase in demand from families who desperately need our help.”

Housing minister Kris Hopkins couldn’t care less. “We’ve given councils nearly £1bn to tackle homelessness and to support people affected by the welfare reforms,” he sniffed.

“I am very clear that they should be fully able to meet their legal responsibility to house families in suitable accommodation.”

Let us be very clear on this: the problem is not that Tories like Hopkins don’t understand. This is exactly the result that they wanted; they just won’t acknowledge it because it is electorally damaging.

Look at the policies that created this problem: The bedroom tax; the ‘Pickles Poll Tax’, otherwise known as the Council Tax reduction scheme; the benefit cap that so many people in this country seem to support without understanding any of its implications.

Vox Political reported back in January what they would mean: “There will be a rise in rent and mortgage arrears… affordable housing will be less available and landlords less able or willing to rent to tenants on benefits… Private sector rental may become less attractive to landlords if tenants aren’t paying the rent. This will lead to a growth in homelessness. Councils have statutory duties and may see an increasing burden.”

But increases to the Discretionary Housing Payment fund have been entirely insignificant compared with the extra burden councils have faced. They received £150 million between them; Durham County Council had £883,000 and spent it all within eight weeks.

We have seen the start of the social cleansing predicted by this blog back in August 2012, when we noted that at least one council would use these measures to “clear out the poor and set up shop as a desirable residence for the rich”.

The housing bubble created by George Osborne with his ‘Help To Buy’ scheme will accelerate this process.

So don’t let a Tory tell you it’s nothing to do with them. They wanted this. In fact, 80,000 homeless children at Christmas is probably not enough for them.

Hands off my medical records, Jeremy!*

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The two-fingered salute: Jeremy *unt displays his high regard for the NHS patients whose details he wants to steal and sell to private business.

Conservatives. They think they own everything – including your medical records.

If you live in England, Jeremy ‘The Misprint’ *unt wants your doctor to send your confidential patient record to a national database, from which it will be sold on – sold on to make money for him, mark you – to “approved” private companies and also universities.

The system is called the General Patient Extraction Service (GPES) – although exactly who it serves is entirely up for debate. You may also see it described as the care.data scheme.

He thinks this gross abuse of patient confidentiality is a good idea. But then, he’s a Tory and therefore thinks he has a God-given right to take anything, from anyone, if they have less filthy lucre than himself.

According to the Daily Mail – and you know the Tories have lost the plot when even the Heil weighs in against them – the *unt wants us to believe that the information will be valuable for medical research and screening for common diseases.

And an NHS England spokesman told the paper, “The programme will provide vital information to approved organisations about the quality of health services.”

Oh really?

So in fact this information could be used by private health companies as evidence of failures by the National, publicly-funded, service, yes?

How would it help in screening for common diseases? This information becomes freely available without any data having to be sold – how else would we know when an epidemic breaks out?

And how is this valuable for medical research – beyond the possibility that the now-infamous ‘job offer’ for people to take part in human medical experimentation may be targeted at particular individuals, according to medical records that they thought were only available to their own, trusted GP?

Doctors say Mr *unt and NHS England have failed in their duty to publicise the plan in a proper and reasonable way, that patients are not getting an “informed” choice about the matter, and that patients could be identified from the data with any information other than that on common conditions – which, we’ve already established, becomes public knowledge anyway.

Some Local Medical Committees (LMCs) are already discussing whether to opt out of the system – and this blog would urge all the others to do the same.

If you are concerned about this gross invasion of your privacy, you can contact your own LMC and request that they opt out. Contact details can be found on the British Medical Association’s website here.

*In fact he won’t be able to get his filthy hands on them anyway because I live in Wales. The title is for effect.

Are you going to let David Cameron abolish your rights without a fight?

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Skewed view: This image (not mine) provides a startlingly accurate representation of the way British Conservatives see Europe. Do you honestly think they can be trusted to honour the human rights that European laws have granted us?

You do realise what David Cameron means when he says he wants to re-negotiate our membership of the European Union, don’t you?

For a start, he means he wants to abolish laws that protect the human rights your ancestors fought tooth and nail to win for you.

He won’t make any deals in your interest. That’s not in his nature.

If he gets his way, you could lose the right to:

• Written terms and conditions of work, and a job description – and the right to the same terms and conditions if transferred to a different employer.
• Four weeks’ paid leave from work per year.
• Not be sacked for being pregnant, or for taking time off for ante-natal appointments.
• Come back to work after maternity leave, on the same pay, terms and conditions as before the leave started.
• Health and safety protection for pregnant women, new and breastfeeding mothers.
• Parental leave.
• Equal treatment for workers employed through an agency.
• Tea and lunch breaks during the working day for anyone working six hours or more
• One day off per week.
• Time off for urgent family reasons.

In addition, Cameron could relieve employeers of the legal obligation to ensure the health and safety of their workers, including undertaking risk assessments, acting to minimise risks, informing workers of risks, and consulting on health and safety with employees and their representatives. In his cost-cutting brave new Britain you’d just have to take your chances.

Health and safety representatives from trade unions could lose the right to ask employers to make changes in order to protect workers’ health and safety, and they would lose their protection against unfair treatment by their employer for carrying out their duties in relation to this.

The ban on forcing children less than 13 years of age into work could be lost, along with the limit on the hours children aged 13 or more and young people can work.

Children who could then be forced into work, regardless of the effect on their education, would have no rules protecting their health and safety, and the rules that say they can only be employed doing “light work” could also be abolished.

Protection from discrimination or harassment at work on grounds of gender, religion or belief, disability, age or sexual orientation – direct or indirect – could be dropped.

And the right of disabled people to expect their employers to make reasonable adjustments for them at work could also be abolished.

These are just your rights at work!

Cameron himself has said, as leader of the Opposition: “I do not believe it is appropriate for social and employment legislation to be dealt with at the European level. It will be a top priority for the next Conservative government to restore social and employment legislation to national control.”

And as Prime Minister: “Complex rules restricting our labour markets are not some naturally occurring phenomenon. Just as excessive regulation is not some external plague that’s been visited on our businesses.”

To find out what he meant by those words, we must turn to the former leader of the British Conservative MEPs, Martin Callanan, who said: “One of the best ways for the EU to speed up growth is to … scrap the Working Time Directive, the Agency Workers Directive, the Pregnant Workers Directive and all of the other barriers to actually employing people if we really want to create jobs in Europe.”

Of course, they distort the facts. These rules aren’t barriers to employing people at all; they are structures within which people may be employed responsibly.

The Tories want to ban responsibility in the workplace. They want a return to dangerous employment conditions, abuse of workers and the removal of any legal protection from such abuse that they may have.

They will tear apart your rights at work.

So, if you are living in the UK and you’ve got a job, please take a moment to consider what this means for you. You might agree with the Coalition on its benefits policy that has led to thousands of deaths of sick and disabled people; you might agree with its bedroom tax and too-low benefit cap that has led to a rapid rise in debt and homelessness among the unemployed and those on low wages.

But now you know they’re coming for you, too.

What are you going to do about it?

Are you going to sit on your thumbs and do nothing – just meekly wait for them to rock up and tell you they’ve abolished all your rights at work and you can now go and slave for them in appalling conditions with absolutely no legal protection at all?

In other words, when it’s you that’s threatened, are you going to let it happen, just like you let it happen to the sick, disabled, unemployed and low-waged?

Or are you going to take action and make a difference?

It doesn’t take much. You could write to David Cameron and to your MP at the House of Commons. You could email them – just look up the addresses on They Work For You, or you could add your name to the letter being created by Unions Together. Yes, I know Mr Cameron says the unions are a bad thing, but in this case the enemy of your enemy is your friend.

As the leader of the European Parliamentary Labour Party, Glenis Willmott MEP, says: “Our rights at work are not ‘red tape’ to be slashed away. Don’t let Cameron and the Tories get away with this great European scam.”

Life and death issues – Labour’s living wage v another Tory weapons junket

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We’re all about the money: David Cameron is in the Middle East, hawking our jet fighters to foreign powers.

It’s a matter of priorities.

On the left hand, we have the Labour Party, campaigning strongly for the so-called “living wage” – an earnings level for British workers that will provide enough for them to look after their families, heat their homes, feed their kids, care for their elderly relatives and plan for the future (as Ed Miliband was set to say at a speech today).

On the right hand, we have Conservative leader (and comedy Prime Minister) David Cameron, off on a junket to the Middle East in a bid to sell Typhoon fighter jets to Arab nations.

… Because that always works well for us, doesn’t it? (/sarcasm)

Conservatives have been selling weapons to foreign countries for decades. We know that 16 British firms were listed as having supplied arms to Iraq (the information is in a 12,000-page dossier the Iraqis kindly supplied to the UN in 2003). It has been alleged that one of the arms dealers involved in those sales was Mark Thatcher, son of the former Conservative Prime Minister. It’s a certainty that these companies were making their sales while the Conservatives were in power during the 1980s and 1990s, and probably benefited from Conservative government trade missions.

Perceptive readers will, at this point, assert that Labour governments have also sold to foreign powers, and this is true. I have been able to find evidence of sales to India and to Israel during Tony Blair’s controversial premiership.

It’s a very murky subject and nobody in British politics can say their hands are clean.

The best I can suggest is that Labour didn’t sell arms to anyone who was likely to use them on British citizens. The Conservatives were indiscriminate (and we know – or at least have good reason to believe – that arms sold to Iraq were indeed used against British soldiers).

Cameron himself has already earned adverse media coverage for selling arms to countries with questionable human rights records – in other words, those that might use those weapons on their own citizens. He has tried to talk these claims down –

– but it is telling that he has made damn sure there will be minimal media coverage of this trip. Downing Street has spent two years trying to restrict media access to the PM’s overseas visits, making him the only G7 leader who is not accompanied abroad by a full press corps. The preferred total is just one broadcaster (presumably, one who has been specially selected by Downing Street and who is, therefore “one of us”).

The deals Cameron hopes to make are said to be worth more than £6 billion to the UK. However, considering this government’s miserable record in tackling tax evasion and avoidance, one wonders how much of that will make it into the Treasury.

Contrast this secrecy with the full-on publicity campaign for the living wage, under way courtesy of Ed Miliband and the Labour Party, here in Blighty. The living wage is £7.45 per hour (outside London; £8.30 within the capital) – only a little more than £1 above the minimum wage, but it could make a big difference to workers across the country.

For every £1 spent in the private sector on getting workers up to the living wage, around 50 pence of that would come back to the government in savings on tax credits and benefits, and in higher tax revenue. In other words, it would help pay off the national deficit and debt.

“The living wage isn’t an idea that came from politicians,” says Mr Miliband in his speech today. “Or from academics in thinktanks.

“It came from working people themselves. People who recognised that they were giving their all for organisations that could afford to pay just a little bit more to give dignity to them, but who weren’t doing so. People who recognised that their firms might be more likely to succeed if they did.

“Our economy is not working for working people but just for a few at the top – a few taking ever-more of a share of the national cake, while other people struggle more and more to make ends meet.

Mr Cameron’s arms junket is living proof of the truth of those words.

Postscript: In his speech, Mr Miliband lists Labour councils that have introduced the living wage. I’m happy to add that Powys County Council, although independently-run, has pledged to research the possibility of introducing the living wage at the earliest opportunity.