Petition demands fibromyalgia test be fit to work

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allowance, Department, Disability Living Allowance, DLA, DWP, employment, ESA, fibromyalgia, government, health, Mansel Aylward, medical, Mike Sivier, mikesivier, Pensions, people, petition, point scoring system, politics, rheumatologist, sick, social security, support, Universal Credit, Vox Political, welfare, work

The Department for Work and Pensions is being told to sort out its benefit assessment system after campaigners said it is rigged against people who suffer from Fibromyalgia.

The petition – ‘Change DWP Medicals for Fibromyalgia’ – may be found here.

Long-term readers will know that Fibromyalgia is one of the conditions suffered by Mrs Mike, partner of Vox Political writer Mike Sivier. She has hijacked this space to post the following message from the petitioners:

“In brief, the petition asks that Department of Work and Pensions medicals for Fibromyalgia be carried out by a qualified rheumatologist, and that the decision regarding the receipt of benefits not be based on the current point-scoring system.

“The full petition reads:

“‘We, the undersigned, call on the British Government to ask that DWP medicals for Fibromyalgia be carried out by a qualified rheumatologist, and that the decision made about the receipt of benefit not be based on a point scoring system.’

“‘At the moment the DWP are using an outside agency to carry out medicals on people with medical conditions, and using a point scoring system to decide whether or not people are entitled to benefits.

“‘Most of the medicals are carried out by a nurse or other healthcare professional in less than an hour by asking a few targeted questions. With a condition like Fibromyalgia, it takes a qualified rheumatologist to diagnose the condition and understand the treatment that needs to be implemented to attempt to manage the pain of the condition.

“‘A rheumatologist would understand the pain and associated problems that Fibromyalgia sufferers face on a daily basis. Yet the nurse or health care professional that fills in the forms for the medical sees someone for less than an hour with no understanding of the condition and how it affects each person individually.

“‘It is not possible for someone of this level to understand the issues that Fibromyalgia suffers face, and the medicals should at the very least be carried out by a rheumatologist.

“‘During the medical you are assessed on how much you can move in certain directions. At no point are they taking any interest in how much pain you are in whilst this is going on, or how many painkillers you have to take afterwards.

“‘A favourite question is, “How far can you walk without discomfort?” The answer for a most Fibromyalgia sufferers is over 200 metres if they absolutely have to. What they don’t ask is, “How much pain are you in?” Most Fibromyalgia sufferers are in pain before they start to walk; walking just increases the pain.

“‘The point scoring system is stupid and unfair and needs to be abolished. Fibromyalgia sufferers are being consistently turned down for benefits that they should be entitled to, as this is a condition recognised by the DWP – and I quote, “Professor Aylward, on behalf of the DWP, reaffirmed that the DWP recognises fibromyalgia as a real and disabling condition, and not just something that is ‘all in the mind.'” If this is recognised by the DWP as being a “real and disabling condition” then why are diagnosed sufferers being refused DLA and ESA?

“‘It has been reported that Fibromyalgia Sufferers often suffer more pain than people diagnosed with rheumatoid arthritis.

“‘Despite the DWP’s statement, Fibromyalgia sufferers are being discriminated against, as the condition is seen as “invisible”, like many other conditions.'”

To sign the petition, go to this site and click the “Sign the petition” button near the bottom of the page. For more Fibromyalgia, Chronic Fatigue Syndrome and Natural Wellness news, sign up for free HealthWatch newsletters.

That’s the end of Mrs Mike’s bit. As someone who lives with a person who has Fibromyalgia, dear reader, you may safely conclude that I know a fair few things about the subject myself. I sat in on Mrs Mike’s work capability assessment and I can vouch for the truth of the statements regarding questions asked during that interview and the physical examinations that take place.

Mrs Mike’s mobility was checked very thoroughly during her assessment but no interest has ever been shown in the fact that she spent the next three days on the sofa in our living room, unable to move because of the pain she was suffering.

The question about walking is far more subjective. Obviously, after the WCA, Mrs Mike couldn’t walk anywhere without discomfort but, even when she is well enough to move, pain always sets in within a few paces and the chance to sit down is regarded as a blessed relief.

Yet Mansel Aylward (for it was he) said the DWP recognises Fibromyalgia as a “real and disabling condition”.

While these tests are carried out by people who are not qualified to recognise the symptoms of the condition and the problems it causes, the DWP is only paying lip-service to its claims about Fibromyalgia.

Please sign the petition and help ease the lives of people with Fibromyalgia across the UK.

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Tories are using the poor for medical experimentation

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approve, chemical, chemist, companies, company, Conservative, deprived, drug, experiment, firm, guinea pig, health, ill, Jeremy Hunt, licence, life, live, market, medical, medicine, national, office, ONS, pharmaceutical, poor, profit, secretary, short, statistics, Tories, Tory, trial

Seal of approval: We asked TV doctor House MD whether he foresaw any problems with the Early Access to Medicines scheme. “Nuh-uhrr,” he replied.

Concern has been raised over a plan announced by Health Secretary (and misprint) Jeremy Hunt to give new medicines to people who are severely ill, years before they are licensed.

In comparison, little has been said about findings by the Office for National Statistics (ONS) showing that people in deprived areas live shorter lives and spend more of those lives in poor health.

There is an obvious conclusion to be drawn from this:

If poorer people spend more time in ill health, then they are more likely to be given experimental drugs before those treatments are clinically proven.

In other words, the Conservative-led government is using the poor as guinea pigs for drug trials.

The BBC quoted Mr Hunt: “What patients want is sometimes to try medicines that may not be clinically proven to be effective but are clinically safe. We are streamlining the process so these medicines can be used much earlier – particularly if they have early promise – and that is something which will bring hope to a lot of patients.”

How does he know these medicines are safe? How does he know that people want them? How does he know that they’ll do what they say? He doesn’t.

This shows what he wants – to make the UK a profitable place for pharmaceutical companies by giving them a market for drugs that could be completely useless – or could have unforeseen effects.

It’s more marketisation for our once-great NHS.

Long-term readers will be aware that Mrs Mike has been receiving treatment from the NHS in England, including injections to alleviate the severe back pain from which she suffers.

I asked her if this announcement was worrying for her – as a poor person who has spent much of her life in ill-health.

“Nuh-uhrr,” she said. That seemed conclusive, so I threw her lunchtime slab of raw meat into the cage and locked the door before she could reach me.

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OH Insist: Atos bullies demand dismantling of critical Facebook sites

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allowance, Atos, Atos Miracles, benefit, benefits, Black Triangle, bully, campaign, company, dead, death, defamation, defame, defaming, Department, die, disability, disabled, dismantle, dismantling, disrespect, DWP, employment, ESA, evidence, Facebook, fact, fair comment, Group, hatred, health, IB, ill, Incapacity Benefit, incite, medical, member, Mike Sivier, mikesivier, mortality, opinion, Pensions, people, person, politics, sick, social security, staff, subject, support, uk statistics authority, Vox Political, vulnerable, WCA, welfare, Welfare News Service, work, work capability assessment

Disability campaign groups have started receiving threatening messages from OH Assist, the new face of Atos Healthcare.

The messages have been posted to Facebook pages belonging to the Welfare News Service, Black Triangle Anti-Defamation Campaign in Defence of Disability Rights, The People Vs Government, DWP and Atos and Atos Miracles (so far).

They state: “We ask kindly that you remove this page as it incites hatred towards our staff and members. Thank you.”

The wording carries an implicit threat of litigation, as an administrator on Atos Miracles explained: “They are threatening to take legal action on those allegedly defaming them, as it incites hatred towards their staff. So can we take legal action for how they’ve treated the sick/disabled and vulnerable?

“As someone said, you take one of us on, you take all of us on.”

The post continued: “We have a right to our opinions, just as they think they have a right to (in conjunction with the cowards at the DWP) bully, disrespect and shamefully and callously treat the genuinely sick/disabled!

“People have died at the above’s hands. That is the reality.

“So, OH Assist, Atos, or whatever name you will now practice under…

“See you in court.”

Vox Political has not received any messages from OH Assist or Atos – which is curious as the DWP, at least, reckons this blog is about a “‘cover-up’ of the number of Incapacity Benefit and Employment and Support Allowance claimants who have died” following Atos assessment.

Perhaps this is tacit admission of the validity of the articles on this site – who knows?

If that is true, it seems strange that they do not appear to have considered another fairly obvious conclusion – we all talk to each other.

Vox Political considers that any attack on sites that criticise Atos – under any of its many names – for the horrific results of its work capability assessment ‘medical’ tests is an attack on us all, and stands ready to assist any colleagues who come under such fire.

To OH Assist, we say: “What’s the matter, fellows? Aren’t you aware that UK law allows anyone to provide their opinion, or fair comment, on any subject, person or company, providing it is supported by factual evidence?

“If you were able to provide information that the number of deaths following Atos assessments dropped after November 2011 (the last month for which figures have been provided) you might have a leg to stand on. These figures would have to be verified by an independent source like, perhaps, the UK Statistics Authority in order to give them meaning.

“Why don’t you just come up with some evidence to show that you haven’t done what everybody believes?”

In other words:

Put up or shut up.

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Was Mark Wood the last stumbling-block for Atos?

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allowance, assessment, Atos, bedroom tax, benefit, claimant, corporate manslaughter, criminal, David Cameron, dead, death, Department, die, director, DPP, DWP, employment, ESA, FOI, food, Freedom of Information, government, health, human rights, IB, ICC, Incapacity Benefit, Information Commission, International Criminal Court, Mark Wood, medical, mental, Mike Sivier, mikesivier, mortality, Pensions, people, phobia, police, Public Prosecutions, Samuel Miller, sick, social security, starve, Stephanie Bottrill, support, un, united nations, Vox Political, welfare, Witney, work, work capability

Everybody should know by now that British citizen Mark Wood starved to death four months after a medical assessment by Atos found him fit for work, even though it was only reported widely yesterday.

The ruling on the 44-year-old was made against the advice of his GP and in the knowledge that Mr Wood – who lived in David Cameron’s Witney constituency – had mental health conditions including phobias of food and social situations. He weighed just 5st 8lbs when he died in August last year.

His GP, Nicolas Ward, told an inquest into Mr Wood’s death: “Something pushed him or affected him in the time before he died and the only thing I can put my finger on is the pressure he felt he was under when his benefits were removed.”

In a normal society operating under the rule of law, that should be enough to trigger a halt on all work capability assessment medical tests while the entire system is examined with a view to preventing further harm. This was discussed in Parliament last week (read my live blog) but because this was a backbench motion the government has insisted that it only needs to take the unanimous vote in favour of the move as “advisory” – and has done nothing.

That is not good enough for many of us. Samuel Miller, the campaigner who has been trying to bring UK government discrimination against the disabled to the attention of international organisations like the United Nations has already signalled that he will be demanding action.

On Twitter yesterday (February 28), he wrote: “I’ll inform the UN’s human rights office… as well as write the Director of Public Prosecutions (DPP); a corporate manslaughter investigation into Atos and the DWP needs to be opened.

“I’ll also file a criminal complaint against Atos and the DWP with Britain’s Metropolitan Police Service.”

Mr Miller has also been awaiting a ruling from the Information Commissioner on his Freedom of Information request from November 6, 2012, demanding details of post-November 2011 Incapacity Benefit and Employment and Support Allowance claimant mortality statistics. The Commission called on the Department for Work and Pensions to come up with a valid reason for its refusal, under the FoI Act and the DWP has failed to provide one so far.

For Mr Miller, the situation has now dragged on far too long. “I’m not going to wait for a ruling from the Information Commissioner’s Office, which I’m unlikely to win. Due to the tragic starvation death of Mark Wood, I’m going to request that the UN’s human rights office obtain a subpoena from the International Criminal Court prosecutor, requiring that the Department for Work and Pensions release the post-November 2011 IB and ESA claimant mortality statistics that I requested on November 6, 2012.”

He is also awaiting the findings of an inquest into the death of Stephanie Bottrill, the Bedroom Tax victim who died when she walked in front of a lorry on a busy motorway, after leaving a note blaming the government. That hearing has not yet taken place.

Samuel Miller has cerebral palsy and lives in Canada, and yet he is willing to do all this to correct injustice in the UK. He puts most of us to shame.

Of course, I am looking forward to my tribunal hearing, in which I hope to trigger the release of those post-November 2011 IB and ESA claimant mortality statistics. If Mr Miller manages it first, then my hearing will focus on why my request for the information was dismissed as “vexatious”, as this has serious implications for any future Freedom of Information requests.

I’d like to hear from others who are doing something about this – even if it only comes down to contacting their MP.

Or do you think this man’s death should be in vain?

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

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approved organisation, care.data, choice, confidential, database, fail, failure, General Patient Extraction Service, government, GPES, health, hold, HSCIC, human, identified, identify, identity, Independent, Information Centre, informed, Jeremy Hunt, medConfidential, medical, Mike Sivier, mikesivier, NHS, NHS England, outcry, patient, people, Phil Booth, politics, private, pseudonymise, public, publicise, quality, record, Research, screening, secretary, sell, service, sick, social care, sold, stall, Vox Political

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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Will the government really penalise GPs whose patients opt out of data sharing?

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anonymise, bid, bma, British Medical Association, bullied, bully, Care Quality Commission, care.data, CCG, clinical commissioning group, common, company, Conservative, Daniel Poulter, data, disease, doctor, Extraction Service, firm, form, General Patient, government, GP, GPES, GPonline.com, health, Health and Social Care Information Centre, healthcare, inform, Information Commissioner, investigate, investigation, Jeremy Hunt, letter, medConfidential, medical, Mike Sivier, mikesivier, National Health Service, NHS, opt out, penalise, people, pharmaceutical, politics, private, privatisation, privatise, profit, RCGP, record, reprisal, Research, Rosie Cooper, sale, screen, secretary, sell, share, sharing, sick, sold, threat, Tim Kelsey, Tories, Tory, undercut, Vox Political

It seems the government has found a way to dissuade GPs from letting patients opt out of having their medical records sold to private firms – the threat of penalties or even an investigation into the way they run their practice.

Vox Political revealed earlier this month that the government is planning to make a profit from selling the private records of NHS patients in England to healthcare and pharmaceutical firms.

The records are said to be ‘anonymised’, but in fact anyone buying your details will be able to identify you.

The system, originally called the General Patient Extraction Service (GPES), now the Health and Social Care Information Centre, may also be described as the care.data scheme. Health Secretary Jeremy Hunt wants you to think the information will be used for medical research and screening for common diseases, but in fact it could be used by private health companies as evidence of failures by the National Health Service, and could help them undercut NHS bids to continue running those services – accelerating the privatisation that nobody wanted.

Patients have the right to withhold their data, but they must specifically inform their medical practice of their wishes. This is why medConfidential created a web page containing a special opt-out form, along with a form letter in various formats, allowing patients to opt out themselves, their children and any adults for whom they are responsible.

Now GPs are living in fear of reprisals if they don’t deliver enough details to the new system.

According to GPonline.com, Health minister Dr Daniel Poulter failed to rule out penalising GP practices with a higher-than-average proportion of patients opting out of new NHS data sharing arrangements.

In a written answer to Labour MP and health select committee member Rosie Cooper, Dr Poulter also refused to say what level of patient opt-out from the scheme would trigger an investigation.

Asked whether practices would be penalised, who would investigate practices with a high opt-out rate, and at what threshold this would apply, Mr Poulter said: “NHS England and the Health and Social Care Information Centre will work with the BMA, the RCGP, the Information Commissioner’s Office and with the Care Quality Commission to review and work with GP practices that have a high proportion of objections on a case-by-case basis.”

Ms Cooper took this as an admission that GPs were “being threatened and bullied into ensuring patients don’t choose to opt-out”.

Reacting on Twitter, NHS national director for patients and information Tim Kelsey ruled out fines for practices where large numbers of patients opt not to share data. He wrote: “Nobody is going to get fined if patients opt out.”

None of this offers a good reason for you to leave your medical records unprotected – in fact, it gives you more reasons to opt out than before, and might provide GPs with the excuse they need to retaliate.

Doctors have been pushed further and further by the Conservative-led government’s changes to the NHS. For example, they were told they would have a greater say in where the money went, as members of Clinical Commissioning Groups (CCGs), but that was not true – they don’t have the time to take part in such decisions so they have been handed over to firms that are often part of the private companies now offering services to the NHS (for a price).

Now they are being told they may face reprisals if they do not betray the principle of doctor-patient confidentiality.

But you can only push a person a certain distance before they push back.

How will NHS doctors in England respond?

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BBC confirms ‘Tory mouthpiece’ accusation with updated lies about ESA

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abuse, allowance, andrew dilnot, Atos, BBC, benefit, Black Triangle, Britain on the sick, Channel 4, Conservative, contempt, crime, defamation, defamatory, Department, disability, disabled, Disabled or faking it, Disabled People Against Cuts, Dispatches, DPAC, DWP, employment, error, ESA, falsehood, fit for work, hate, hatred, IB, identical, inaccuracies, inaccuracy, Incapacity Benefit, Income Support, lie, medical, mouthpiece, offense, offensive, Panorama, Pensions, report, ridicule, Severe Disablement Allowance, Sheila Gilmore, sick, sickness, statistics, story, support, Tories, Tory, uk statistics authority, UKSA, update, WCA, withdraw, work, work capability assessment

I have complained to the BBC and the UK Statistics Authority about this disgrace.

Today (January 25) the BBC published a scurrilous little screed claiming that “nearly a million people who applied for sickness benefit have been found fit for work”. Needless to say, the figures come from the Department for Work and Pensions and aren’t worth the time it took to type them in.

The story states: “The DWP claims 980,400 people – 32% of new applicants for Employment and Support Allowance – were judged capable of work between 2008 and March 2013.

“More than a million others withdrew their claims after interviews, it adds.”

It goes on to say that disability campaigners had stated that the work capability assessment tests were “ridiculously harsh and extremely unfair”, but says nothing about the fact that an almost-identical story was withdrawn last year after it was found to be riddled with inaccuracies – if not outright lies.

Even more bizarre is the fact that the story does provide the factual reason for claims being withdrawn. They “either returned to work, recovered or claimed a benefit “more appropriate to their situation”.

In other words, these people used the system in exactly the right way, yet the DWP – and the BBC – are pretending that they were trying to fiddle it in some way.

To explain what happened last year, let’s look at a letter from Sheila Gilmore MP to Andrew Dilnot, head of the UK Statistics Authority, and his response. You can find it on page 39 of the DPAC report on DWP abuse of statistics.

The letter from Sheila Gilmore states: “On 30 March 2013 an article by Patrick Hennessy entitled ‘900,000 choose to come off sickness benefit ahead of tests’ was published in the Sunday Telegraph. Please find a copy enclosed. I believe that the headline and the subsequent story are fundamentally misleading because they conflate two related but separate sets of statistics. I would be grateful if you could confirm that my interpretation of what has happened is correct.

“The sickness benefit in question is Employment and Support Allowance (ESA). People have been able to make new claims for ESA since October 2008, but those in receipt of the benefits it replaced – Incapacity Benefit, Severe Disablement Allowance, and Income Support on the grounds of disability – only started migrating across in April 2011.

“The article implied that many of this latter group were dropping their claim rather than having to go through a face-to-face assessment, with the implication that they were never really ill in the first place and had been ‘playing the system’.

“However I have checked the figures published by the Department for Work and Pensions and it would appear that the figure of 900,000 actually refers to all those who have made new claims for ESA since its introduction over four years ago, but who have since withdrawn their application before undergoing a face-to-face assessment. These people were not claiming the benefit before and generally drop out of the system for perfectly innocent reasons – often people become ill, apply as a precaution, but withdraw when they get better.

“Of the 600,000 people who have been migrated from Incapacity Benefit over the past two years, only 19,700 have dropped their claim. This is the figure that should have featured in the headline, but the 900,000 figure was used instead.”

Mr Dilnot replied: “Having reviewed the article and the relevant figures, we have concluded that these statements appear to conflate official statistics relating to new claimants of the ESA with official statistics on recipients of the incapacity
benefit (IB) who are being migrated across to the ESA.

“According to official statistics published by the Department for Work and Pensions (DWP) in January 2013, a total of 603,600 recipients of IB were referred for reassessment as part of the migration across to ESA between March 2011 and May 2012. Of these, 19,700 claims were closed prior to a work capability assessment in the period to May 2012.

“The figure of “nearly 900,000” referenced in the article appears to refer to the cumulative total of 878,300 new claims for the ESA (i.e. not pre-existing IB recipients) which were closed before undergoing assessment in the period from October 2008 to May 2012.

“In your letter, you also expressed concern about the apparent implication in the Sunday Telegraph article that claims for ESA had been dropped because the individuals were never really ill in the first place. The statistical release does not address the issue of why cases were closed in great depth, but it does point to research undertaken by DWP which suggests that ‘an important reason why ESA claims in this sample were withdrawn or closed before they were fully assessed was because the person recovered and either returned to work, or claimed a benefit more appropriate to their situation’.”

What he was saying, in his officialese way, was that the Conservatives had wrongly ‘conflated’ monthly figures into a cumulative total; they had misled the press about the figures’ significance; and the press release (which then mysteriously disappeared) ignored a clear caveat in the DWP’s own report that the reason the claims were dropped each month had nothing to do with fear of medical assessment but were because people recovered and went back to work, or else were switched to another benefit deemed more suitable to their circumstances.

Now the BBC has resurrected this story, with brand new, larger numbers that add in the totals for 2013 without telling you whether these were all new claims, or repeat claims, or a mixture; they are all treated as new.

The claim that 980,400 people had been found fit for work after medical tests – the feared Atos work capability assessments – is also extremely questionable – as the BBC well knows.

Its own Panorama programme, ‘Disabled or Faking It?’, investigated whether the DWP was knocking people off-benefit in order to hit financial targets – in essence, making people destitute in order to show a budget saving. A Channel 4 Dispatches documentary, ‘Britain on the Sick’, proved that this was happening. Both were shown at the end of July 2012.

I have complained to the BBC and to Mr Dilnot about the deeply offensive and defamatory way in which these lies have been resurrected, in order to encourage the general public to hold people who are genuinely ill in hatred, ridicule and contempt. If you believe this cause is just, go thou and do likewise.

This behaviour is even more appalling when one considers the rise and rise of hate crime against the sick and disabled.

Members of groups such as DPAC or Black Triangle may even wish to take libel action against the corporation and the DWP on the basis of this report.

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

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approved organisation, care.data, choice, confidential, database, fail, failure, General Patient Extraction Service, government, GPES, health, HSCIC, human, identified, identify, identity, Independent, Information Centre, informed, Jeremy Hunt, medConfidential, medical, Mike Sivier, mikesivier, NHS, patient, people, Phil Booth, politics, private, pseudonymise, publicise, quality, record, Research, screening, secretary, sell, service, sick, social care, sold, Vox Political

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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Vox Political’s top 12 of 2013

Tags

allowance, assessment, Atos, austerity, benefit, benefits, Coalition, Conservative, David Cameron, Democrat, Department, economy, employment, fit for work, government, human rights, Iain Duncan Smith, Labour, Lib Dem, Liberal, medical, Mike Sivier, mikesivier, Nelson Mandela, Pensions, people, police, politics, repression, social security, state, support, Tories, Tory, Vox Political, welfare, work, work capability

Government repression of the people, plans to give corporations the power to overrule national laws, the end of legal protection of our human rights and the continuing horror story that is the Coalition government’s idea of a benefit system were among your top priorities in 2013.

It would have been easy to write a ‘review of the year’ highlighting what I think were the main issues of the year, but this may not have been representative of the feelings of readers.

Instead – borrowing an idea from Pride’s Purge – let’s look back at the articles you, the reader, found most interesting. These are the subjects that we should all watch carefully as the new year progresses and we move ever-closer to the general election of 2015.

While we can see Conservative and Liberal Democrat policies reflected in these stories, let’s also ask what Labour would do. What are the policies of the Opposition on the Transatlantic Trade and Investment Partnership? Would the current Labour leadership reverse party policy of the last 100 years and move to restrict our legal freedoms (as suggested by the disastrous decision to support Iain Duncan Smith’s repressive retroactive law on Workfare in March)?

And what about the other parties – the Greens, UKIP, and the new pretenders that have sprung up in protest at the excesses of a government that was never elected by the British people but has set about changing the face of Britain in such a massive way that the UK of 2015 will hardly be recognisable as the same country that went to the polls in 2010? Are they a serious political force, a vote-splitting annoyance that could allow the Tories back into power, or an expression of the nation’s conscience?

Take a look back – and then take a look forward.

1. Sleepwalking further into Police State Britain as law offers new powers of repression (November 11)

2. Death of a great man marred by the hypocrisy of a weasel (December 6)

3. Iain Duncan Smith has committed contempt of Parliament and should be expelled (May 10)

4. Back to the Dark Ages as the Tories plan to scrap your Human Rights (March 10)

5. Judges find DWP ‘fitness for work’ test breaches the Equality Act and is illegal (May 22)

6. UK police state moves a step closer (to your door) (February 11)

7. Austerity programme proved to be ‘nonsense’ based on a spreadsheet mistake (April 19)

8. Is Labour planning to betray its core supporters by siding with Iain Duncan Smith? (March 16)

9. The biggest threat to democracy since World War II – and they tried to keep it secret (December 4)

10. Are you going to let David Cameron abolish your rights without a fight? (June 10)

11. MPs tell their own Atos horror stories (January 18)

12. Skeletons in ministers’ closets (or indeed bedrooms) come back to haunt them (May 6)

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You can make a one-off donation here:

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Strong Words and Hard Times
in either print or eBook format here:

Information Commissioner rules on the cover-up of DWP-related deaths

Tags

allowance, appeal, assessment, Atos, benefit, benefits, Britain, British, Coalition, Conservative, death, Department, Department for Work and Pensions, disability, disabled, disrupt, DWP, dying, economy, employment, Employment and Support Allowance, ESA, fatal, fit for work, FOI, Freedom of Information, government, harassment, health, Iain Duncan Smith, ICO, ill, immigration, Incapacity Benefit, Information Commissioner, Jacqueline Harris, medical, Mike Sivier, mikesivier, minimum wage, mortality, obsessive, overdose, Parliament, Pensions, people, policy, politics, public interest, request, Samuel Miller, serious, sick, social security, suicide, support, Tories, Tory, UK, unemployment, vexatious, Vox Political, WCA, welfare, work, work capability assessment

What we’re fighting for: It seems certain that Jacqueline Harris (pictured) died because her benefits were stripped from her after a one-question medical assessment. The DWP wants to hide the number of other people who are dying in similar circumstances. [Picture: Daily Mirror]

Long-term readers will know that the author of this blog has spent the last few months trying to get officials at the Department for Work and Pensions to release mortality statistics for people undergoing the assessment procedure for Employment and Support Allowance.

It is in the public interest for the nation to know how many seriously ill or disabled people are dying while they wait to undergo the controversial Atos-run medical assessment, while they await the result, and while they appeal against a result that puts them in the wrong group or claims they are fit for work.

These deaths may be due to deterioration in their health – whether or not it was caused by the process – or suicide prompted by the process or the decision.

An initial Freedom of Information request was rejected by the DWP on the grounds that it was “vexatious”. I disputed that claim, and eventually had to appeal to the Information Commissioner for a ruling after ministers proved intractable.

The first obvious implication of this behaviour is that the number of deaths has been increasing and the DWP is trying to hide that fact from us. During 2012, when the department was still publishing the figures, we saw the average number of deaths leap from 32 per week to 73 per week.

The second obvious implication is that DWP policy is causing the deaths. With regard to this, your attention is drawn to the fact that this decision has been published a matter of days after it was revealed that Jacqueline Harris, of Kingswood, Bristol, died from a suspected overdose after the DWP signed her ‘fit for work’ – on the basis of a ‘medical assessment’ that consisted of one question – “Did you get here by bus?”

The partially-sighted former nurse, who required walking sticks, had a bad back and was in constant pain due to arthritis in her neck, lost all her benefits on the basis of her one-word answer – “Yes.” Amazingly, she lost an appeal against that decision and her death followed soon after.

An inquest has been opened and adjourned, so it is not possible to state the cause of death for certain – but any suggestion that the DWP decision was not a factor must beggar credulity.

That is the context in which the Information Commissioner’s ruling arrived.

You’re really not going to like it.

“The Commissioner’s decision is that the DWP has correctly applied the vexatious provision.”

It seems it is therefore impossible to use the Freedom of Information Act to extract this information from the Department for Work and Pensions. Ministers will never provide it willingly, so it seems we are at a dead end.

Apparently, “The DWP explained to the Commissioner that on 25 June 2013 they received 11 identical FOI requests and in the following days another 13 identical requests. They claim that this was the direct response to an online blog written by the complainant [that’s me] on 25 June 2013.

It seems that I am at fault for encouraging this as, after detailing my FOI request, I did write, “I strongly urge you to do the same. There is strength in numbers.” After a commenter asked if they could copy and past the request, I responded, “Sure, just make sure they know you’re making it in your own name”. And the following day, another commenter wrote, “If we swamp the DWP with requests they surely must respond”. Then on June 29, in another article, I added, “If you believe this cause is just, go thou and do likewise.”

The Information Commissioner’s decision notice states: “In this case, there were 24 identical requests which were sent to the DWP in a short space of time and the Commissioner has seen three identical complaints from the individuals that the DWP believes are acting in concert.

“Given that this issue was raised in a previous request at the end of 2012, it is apparent that the wording of the complainant’s online blog on 25 June 2013 prompted the numerous requests on this issue at the end of June 2013.

“Taking this into account the Commissioner has determined that there is sufficient evidence to link the requesters together and to accept they are acting in concert.”

It seems that there isn’t strength in numbers after all – or rather that the way that the large (by the DWP’s standards) number of us expressed ourselves was detrimental to our efforts. I take responsibility for that. I should have said that if you really believed in the issue, you needed to do something that was clearly separate from my own efforts. With hindsight this seems obvious, but only because we have all learned about the process as we went along. Would anybody have known better?

Regarding the impact of dealing with the requests, “The Commissioner accepts that when considered in the wider context, 24 requests on one topic in a few days could impose a burden in terms of time and resources, distracting the DWP from its main functions.

“The Commissioner accepts that the purpose of the requests may have gone beyond the point of simply obtaining the information requested and may now be intended to disrupt the main functions of the DWP.”

Surely, one of its main functions is the continued well-being of those claiming benefits. If people like Jacqueline Harris are dying because of DWP policy, it could be argued that the requests were reminders of its main function – not a distraction.

I have maintained throughout this process that there was no intention on my part to disrupt DWP functions. The only intention has been to see the mortality figures published. It seems neither the DWP nor the Information Commissioner are willing to allow that.

You have to wonder why, don’t you?

There are gaps in the argument which might provide future possibilities.

According to the decision notice, “The DWP argue that ‘the nature of the actual request is not the issue here. It is merely how these requests were instigated and orchestrated which led to them being treated as vexatious.”

In that case, why did the DWP not honour Samuel Miller’s original request for the information, which was turned down in June? If the nature of his request “is not the issue here”, then it should have been honoured and my own FOI request would never have been made. By its own intransigence, the DWP has wasted not only its own time but mine and that of 24 other people.

How many other requests were made, on the same subject, that the DWP could not associate with this blog?

Also, I was surprised to read the Information Commissioner’s statement: “However, the most significant factor is that the complainant runs an online blog in which the main focus is the DWP and their ‘cover-up’ on the number of Incapacity Benefit and Employment and Support Allowance claimants who have died in 2012.”

If that was the most significant factor in this ruling, then the decision is invalid. This blog was not set up to focus on the DWP’s admittedly despicable behaviour towards its clients; its focus is on British politics in general. Look at the articles published in the last week, covering topics ranging from immigration to the minimum wage, to the economy, and – yes – concerns about the DWP. If DWP ministers think the entire blog was set up to harass them, they’re getting ideas above their station.

It could also be argued that the quoted belief of the DWP, that “it is reasonable to view the requests as part of an obsessive campaign of harassment against it and its officers” is insupportable. If 24 people made FOI requests, but only three complained about the response, this is hardly obsessive. Were any of these people writing in on a regular basis, or were they corresponding only after they themselves had been contacted? I think we all know the answer to that.

Also, the Commissioner’s comment that “the disparaging remarks and language used in the blog cannot be overlooked and does demonstrate a level of harassment against the DWP” is insupportable. The language of the articles has been moderate, when one considers the subject matter. Regarding remarks made by other commenters, the DWP and the Information Commissioner should bear in mind that the comment column is a forum where people may express their opinions. If the DWP doesn’t like those opinions, it should modify its corporate behaviour.

It seems I have a further right of appeal, to the First-Tier Tribunal (Information Rights). I will consider this; observations from interested parties are encouraged.