#Atos Axed, But Will Their Replacement be Any Better?

Those who fail to learn the lessons of history are condemned to repeat it. George Santayana

The signs have been there for a couple of months, but today it happened, Atos were axed from the Work Capability Assessment Contract by DWP Minister for Disabled People Mike Penning. In a statement that spends rather more time trying to blame Labour and Atos than looking at what actually went wrong, Penning announced that Atos will be replaced in early 2015 by a new contractor. Most Atos personnel are expected to transfer to this replacement, however in the longer term Penning anticipates using multiple contractors "to increase competition"

Tweets by the DWP's twitter account @DWPPressoffice stating "Aim is to drive up the number of WCA assessments and cut waiting time" make it clear that there is no intention to reform the WCA, even though disabled people are unanimous in stating that the core problem is the WCA itself, Atos were just the disablist topping.

The statement indicates that Atos will remain responsible for delivering the WCA until their early exit in 2015, though with a "remedial advisory team" pulling manager's strings.

So what does all this mean for those of us who have to live with the damage WCAs do?

The first thing to note is that they're only changing the monkey, not the organ-grinder. It has been clear for a long time that we have had a dual problem with WCA. Atos were the front-end of that problem, with major issues with the attitude of many of their customer-facing staff (the GMC found it necessary to remind Atos doctors that basic honesty was a professional requirement), and a management that was clearly not remotely interested in whether they were meeting basic needs around accessibility and the like, nor any interest in delivering continuous improvement. But behind that problem was the DWP, the structure of the WCA, and the structure of the WCA contract. Research by Kaliya Franklin revealed just how tight were the norms that Atos were contractually held to be DWP (who insist that a 'norm' is not a target, even if you're only allowed to use some of the WCA provisions for one patient in a thousand). And of course the WCA just kept getting harsher and harsher, with the introduction of the imaginary wheelchair, and a perverse insistence that one problem could not affect someone both physically and mentally. @DWPPressoffice's "drive up the number of WCA assessments" is a particularly ominous note when we know a major part of the problem with WCA has been rushed assessments that haven't looked into patient's situations with nearly enough knowledge or detail.

The only companies in a position to replace Atos are likely the other major outsourcing companies: Capita (busy destroying their own reputation on PIP and court interpreter contracts), G4S (already destroyed their reputation over failing to deliver security for the Olympics, then found to have defrauded the taxpayer over offender tagging - and that's without mentioning the forced sedation in South African prisons or the Australian refugee internment camps, or the deaths in care) and Serco (ditto on the offender tagging and the Australian internment camps, with a side dish of falsifying data on a GP out-of-hours service in Cornwall - a contract that was also axed early). Having seen Atos having their brand turned into a toxic nightmare for brutalising disabled people, none of these are likely to be over-eager to involve themselves in WCA, particularly if it is clear the root problems with the WCA are not being addressed. Equally it is clear that the WCA is now so toxic that Atos are willing to buy themselves out of it and take the reputational damage of having walked away/being kicked off a major national contract, rather than face the ongoing month-by-month, day-by-day damage that goes with being the WCA contractor. However, ultimately money is likely to talk. Capita are probably the company in the best position to take over the contract thanks to their involvement with PIP, however PIP delays are growing month by month (even though it is only addressing a fraction of the cases it was supposed to) and PIP may turn out to be even worse than WCA, but about the best that can be said for them is they haven't had the cases of fraud or abuse of people in their care that the other competitors have had.

Introducing multiple contractors likely has rather more to do with hopes of splitting the blame than Penning's claim he wants competition. By creating multiple targets he may hope to split the focus of the disability lobby, but that ignores the way that disabled people have honed their teeth on destroyed Atos's brand as they became media-savvy protesters through sheer necessity. What was done to Atos can be done to any other company that makes the same mistakes in dismissing the voice of disabled people. Facing the possibility of having your brand destroyed is bad enough for companies that already have image problems, facing that possibility for a fraction of the pot is not going to be a winning argument in their boardrooms. And equally, if there is no one company to take the blame, then DWP may find themselves even more directly in the firing line for WCA failures than they already are.

From the DWP point of view, certainly that of IDS and his coterie, the entire issue is likely timing and the election. By making a fuss of sacking Atos now, they likely hope to create an ideal cover story for everything wrong with WCA that will last them through the election. 'Yes, WCA is a mess, but it was Labour's fault, and see, we sacked Atos, the Great Satan, because we really care about those poor, inspiring, disabled people.' And then after the elections they'll be able to blame ongoing issues on 'teething problems' (and the current DWP ministerial crew will likely have moved on to new departments by then). Disabled people know that the truth is that unless there are radical changes to the WCA (such as scrapping it and having the patient's own GP or consultant write the report), then the same tragic catastrophe will repeat itself, particularly if the incoming company will have to do the same inappropriate test in the same inaccessible buildings with the same problematic staff, but IDS has always been a proponent of denying responsibility for whichever DWP fiasco is in the news this week.

Ironically, while Atos are being summarily kicked off WCA, they are being allowed to retain their PIP contracts, even though PIP shows signs of being an even worse car-crash than WCA - perhaps IDS and Penning want to have someone convenient to blame when PIP fails?

Care.Data: In Their Own Words

As a follow-on from my Care.Data: Why Disabled People Should be Worried piece, Kingsley Manning, the Chair of HSCIC (the organisation charged with extracting our medical records from GPs and making them available both inside and outside the NHS) recently gave a speech to the National Health and IT Conference and Exhibition, and it's rather revealing. So, in his own words, this is what HSCIC wants to do in commercializing your medical records:

"It is however timely to point out that there is not necessarily any contradiction between the aims of a commercial organisation and the advancement of the nation's health and social care services. Many of the commercial information intermediaries who make use of our data releases are supporting NHS organisations to plan, transform and deliver their services.

With respect to the pharmaceutical industry, not only does it represent a major contributor to the UK economy, but they are also critical in developing new treatments. It would be perverse if we weren't to support their activities and their endeavours. There could be no better evidence of the effectiveness of health data, shared with us by the patients, than the contribution it makes to crucial break-through in treating deadly diseases.

Quite rightly however, the public are suspicious that these arrangements are in some way unfairly tipped in favour of the profit makers. This suspicion has been fuelled by our innocent lack of transparency. I have no doubt that HSCIC's predecessor organisations were intent on operating in the best interest of the patients of the NHS, but they were working at a different time and without the glare of public interest.

If we are to sustain public trust we not only need to demonstrate that their data is secure and that it is used effectively, but we need to be transparent in everything we do. The current arrangements governing the release of data are undoubtedly confusing and there is inadequate representation of the public voice in our decision-making."

You said it!

And on security:

"With respect to security, and in this I include not just cyber security but also the physical and human security threats, we are a facing a fundamental shift in the level of threat. When I become Chair of HSCIC, 9 months ago one of my first actions was to institute a review of our security arrangements. For more than 20 years I've been running organisations that have been handling sensitive data and I have lived in fear of a major security breach.

Despite that experience I was shocked by the pace and the scale of the developing security risk. Whilst I had been concerned with the lost disc or the stolen laptop, I had failed to appreciate the extent of the risk now posed, whether it's by highly organised, criminal hackers, extremely proficient and motivated activists, or foreign states or ideologically motivated interlopers.

The NHS is reliant on core national information infrastructure and dependent on highly, valuable data assets; we are not immune to these threats.

In the next few weeks we will therefore announce a major strengthening of both the security and IG frameworks for the whole health and social care system."

So if hackers can regularly breach NASA and the Pentagon, who holds out much hope for the good old NHS? Particularly with all the attention Care.Data has been getting, which has to add to the kudos of the first person to hack the system and make the hack public with a massive release of medical records somewhere on the darknet.

And what has the government done since the Care.Data story broke? They've voted down an attempt to make misuse of Care.Data a criminal offence and Jeremy Hunt has promised they won't be caught selling it to insurers again. They propose to do this by requiring there to be a healthcare benefit behind any Care.Data sale, but you can word just about anything to do with health data to have a healthcare benefit, even the SIAS release that brought this into the news could have been worded to claim it would have a healthcare benefit in analysing demographic linkages with particular illnesses, and still give exactly the analysis the insurance industry wanted on links between illnesses and postcodes, at worst they might have needed to hire someone else to do it for them.

Fit for Work?

Citizen's Advice are currently in the middle of a nationwide campaign on ESA (Employment and Support Allowance).  ESA is paid to people who are unable to work due to disability and frequently the decisions that have been made about who does and doesn't qualify have been wrong leading to stressful reconsiderations and appeals.  Many people have died after wrongly being found fit for work.  Others have committed suicide due to incorrect decisions and/or the stress of the process.  Citizen's Advice's campaign is called Fit for Work because they hope that if implemented the changes they're calling for will help make ESA fit for work (i.e. fit for purpose).

The campaign is calling for:

• The Department of Work and Pensions (DWP) should listen to evidence from the health and social care professionals who know you best.
• The medical evidence required to make your case should be provided free of charge.
• The companies running the work capability assessments should be held accountable for poor quality assessments or bad customer service.
• The DWP should continue to pay people ESA while a second opinion is given on their application.

They are doing this in a variety of ways but I wanted to blog about one of them


CABs generate evidence about problems we see.  And they have thousand and thousands of pieces relating to ESA if the evidence submitted just by the bureau I volunteer at is anything to go by (I'm both an adviser and a social policy coordinator so most of the evidence we generate I see before it gets sent to Citizen's Advice head office.).  Those pieces are great for facts.  What when wrong.  When did it go wrong.  How did that affect the client?  But they aren't so good at the more human side of it, how did it make them feel? How did it effect their health?  What happened next, how long did it take to resolve and how did that affect the client? (mostly because in my experience at least we rarely find out the long term outcome)

Citizen's Advice are looking for as many people as possible to share their own stories of ESA in their own words. What it means to live the ESA process. Whether they claim it, they volunteer for a CAB and have helped clients claim it, they've supported friends or family through the process or whatever reason.

 These stories are being gathered on their blog and through the #FitForWork hashtag on twitter.  More stories are still needed and can be submitted here.

Care.Data. Why Disabled People Should be Worried

In the eyes of the law, a government department, a university researcher, a pharmaceutical company, or an insurance company is as entitled to request and receive de-identified data for limited access as a clinical commissioning group, as long as the risk that a person will be re-identified from the data is very low or negligible. Furthermore, all such organisations can make good use of the data. Access to such data can stimulate ground-breaking research, generate employment in the nation’s biotechnology industry, and enable insurance companies to accurately calculate actuarial risk so as to offer fair premiums to its customers. Such outcomes are an important aim of Open Data, an important government policy initiative. 

HSCIC Information Governance Statement

When I wrote an article about the risks of Care.Data for disabled people a fortnight ago I put it on my own blog, because I didn't think it overlapped with the disability and benefits focus of Where's The Benefit. Unfortunately the last fortnight has absolutely changed my mind. I now think that not only is Care.Data one of the worst fiascos of the current government, but that it represents a very real threat to disabled people and particularly to the confidentiality of their medical records, so here is a briefing on Care.Data that hopefully will allow you to decide for yourself whether Care.Data is something you need to opt-out of.

This is quite a long piece, and an incredibly messy tale of woe, if you lack the spoons to read all the way through it, I suggest skipping down to the (almost) last section What Should I Do Now, where I give a recommendation on how to proceed.

What is Care.Data?

Care.Data (note the dot!) is a government scheme to integrate hospital and GP medical records in order to make it available for both NHS governance and planning, and research by outside organisations. This will take the form of a huge database to be run by the Health and Social Care Information Centre (aka HSCIC), an NHS agency that replaced the NHS Information Centre (NHSIC) after the Health and Social Care Act 2012 set all this in motion.

See A simple guide to Care.data for a more in depth background at Wired (when a technology magazine files a health service informatics story under 'Politics', you know things are in a mess). There is also the comprehensive http://care-data.info/ which is run by a concerned GP.

(N.B. Care.Data won't include all the consultant's letters, scrawled doctor's notes and other stuff that tends to be haphazardly wedged into whatever kind of folder your GP uses for your records, it will just be the clinical codes that they type into their PC to indicate disagnoses, prescriptions, consultants and the like.)

So That's Good, Right?

In theory, yes. The study of mass health data promises to be absolutely revolutionary (and it's why personally I'm not quite giving up on Care.Data yet). What is an interesting anecdote in one patient's records, such as the slightly odd reaction I just had to Gabapentin, could become the key to understanding a major risk, or a major opportunity, when extended across the entire patient population of England - Scotland, Wales and Northern Ireland are going their own way on this, and Dr. Margaret McCartney (who was behind an excellent expose of the attitudes of Atos towards disabled patients) has an article on why their approaches to the same issue are better, which is available in the BMJ: Care.data: why are Scotland and Wales doing it differently? Potential uses which have been discussed include not just pure statistical research, but using the data for recalls of medical devices (c.f. the 2011 breast implant scandal), and during healthcare emergencies. Less positive is the potential applicability of the data to 'NHS commissioning', i.e. privatisation.

So Why Am I Just Hearing About This?

Initially HSCIC seemed to be of the opinion that we shouldn't worry our little heads about this. The NHS England National Director for Patients and Information, Tim Kelsey, who has an extraordinarily convoluted background in this story, has openly stated in the past that people using a public service should not have the right to opt-out of sharing their data. Having been thumped a few times by, amongst others, the Information Commissioner's Office (ICO), responsible for enforcement of the Data Protection Act (which incidentally Care.Data has partial immunity from), HSCIC agreed to provide an opt-out and to send out a leaflet to every household in the country explaining the issues with Care.Data. This leaflet was duly distributed by the Royal Mail along with all the other junk mail, but most people either never received it or never noticed it, and it was eventually revealed that, unlike most other government mail shots, HSCIC had failed to sign up to the scheme that overrides junk-mail opt-outs. Amongst the people who never saw it was, rather ironically, the Information Commissioner who had insisted it be sent out in the first place. Nor was ICO happy with the content, stating on Today "We’re not sure without further explanation on the website and very clear views, that people will understand what that means”, a statement Tim Kelsey was forced to agree with. Which is hardly surprising as a leaflet supposed to brief people on what Care.Data was, the risks, and how to opt out, consisted solely of a PR puff-piece on how important Care.Data was, no mention of any risks, and an unexplained statement saying that if people wanted to opt-out then they should contact their GP

Assuming their leaflet was distributed at all, disabled people then faced the problem of accessibility. There were Braille, Large Print, Screen-Reader Friendly and Easy-Read versions of the leaflet available, which is good, better performance than we are used to from DWP, but to know about the Accessible versions you had first to read the small print on the non-accessible version of the leaflet.... How people intellectually unable to give informed consent to Care.Data are intended to proceed appears to have been left completely unaddressed. 

There are inline links to the screen accessible versions in the text above, for Braille you need to ring 0300 456 3531 or the text phone number 0208 742 8620 and request the Better Information Means Better Care leaflet, I believe a spoken word version should also be available through the first number. Quickest turn around on delivery of a braille version I've heard of was 5 weeks, other people are still waiting.

The Fiasco Unfolds

The first domino to fall was on Tuesday 18th February, when HSCIC announced that the gathering of Care.Data would be postponed from April to October as there were a few concerns over whether people had been provided with enough data. Computer Weekly, however reported Legal straits forced NHS delay on Care.Data, suggesting that the inadequate information provided to patients meant HSCIC had actually created a situation in which GPs might be in breach of the Data Protection Act if they allowed Care.Data access to their records (even though the Health and Social Care Act 2012 was supposed to have excluded Care.Data from most DPA provisions). Disturbingly there are reports of at least one NHS trust threatening GPs that they would be in breach of contract if they did not opt patients in to Care.Data and that a GP had been ordered to take down a statement on his surgery web-site saying he was concerned with the scheme.

Next domino to fall was on Sunday 23rd February, and it was a doozy. The Daily Telegraph reported that 13 years worth of all records of hospital in-patient admissions from HES, the predecessor to Care.Data, 47m records in all, had been sold to the 'Staple Inn Actuarial Society'  (SIAS), which it turns out is a combination of a) a trade body/professional society for actuaries (the people who do big-data number crunching for the insurance industry), and b) a convenient not-for-profit front for the insurance industry. The Telegraph went on to reveal that the data had been analysed and combined with data from consumer credit companies - meaning that they had been able to narrow cases down to at least post-code areas, to allow insurers to review their prices for health insurance in the case of various health issues (the threat warning sensors of any disabled person who has ever tried to get travel insurance, never mind life insurance, should be twitching already). SIAS's own report made it clear that they had been able to identify individual patients, by saying they were able to link multiple admissions, and then link those patients to consumer credit information, which would have required at least partial post-code matching, but this may have fallen a step short of full identification to a named individual. 

The first response from HSCIC was that the story involved their predecessors NHSIC and in any case was legal (first say it was someone else's fault, then claim there isn't a problem anyway, absolutely classic Cover Your Backside 101). The second response from HSCIC again emphasised that it was NHSIC at fault (never mind NHSIC became HSCIC), but admitted the transaction was illegal, though precisely how it was illegal it seemed to find impossible to explain (it now appears they may not even have taken legal guidance on the issue, so the legal situation is anyone's guess). HSCIC also tried to argue that this was all right as SIAS is a not-for-profit organisation, seemingly completely unaware that not-for-profits are often used as fronts for for-profit organisations, such as in the case of, oh, SIAS and the insurance industry. 

It was later revealed that SIAS paid precisely £2,220 (or should that be 2,220 pieces of silver?) for the data, suggesting no-one in government has the slightest idea of what this information would be worth to Big Pharma and the like (Care.Data apparently charges on a cost-recovery only basis). I don't like having my personal health information ripped off, having it ripped off for a fraction of its value does not make me feel better.

Suggesting a carefully timed story on the part of the Telegraph (and possibly a carefully timed leak by unknown parties), HSCIC was due in front of the Health Select Committee on Tuesday 25th February to discuss concerns over Care.Data, a session which was recorded and which is available here. The performance of Tim Kelsey, Max Jones, Director of Information and Data Services, HSCIC, and Dr Dan Poulter, MP, Undersecretary of State for Health, was thoroughly underwhelming (except when it was overwhelmingly arrogant), whereas the privacy advocates who also appeared were clearly passionate over patient confidentiality, openly accepting of the value of Care.Data and fully on top of their briefs.

The appearance by the HSCIC team was a car-crash, the minister appeared not to know his brief and all three were persistently evasive. It rapidly became clear that they couldn't answer questions on what was allowable because they hadn't yet written their code of practise (for a system supposed to go live in April), something which was required by the Health and Social Care Act 2012 when it created HSCIC and Care.Data. They blamed this on only (only?!?) having had 10 months since taking over from NHSIC. When asked to provide data on previous decisions by NHSIC they equivocated, despite it being the predecessor organisation from which they acquired staff, facilities, and records. When asked to provide access to NHSIC decision makers, who should largely still be working for HSCIC they were even more equivocal. Amid all this farce, being asked why, if it was a NHSIC decision, HSCIC had allowed their logo to appear on the SIAS report, was almost lost in the background noise. One particularly disturbing moment from the disability rights point of view was when Barbara Keeley, MP for Worsley and Eccles South, raised the issue of data referencing patient Mental Health being subject to substantial stigma, the possibility it might end up with potential employers and therefore surely requiring the same protection as AIDS or STD status, only to be told by Dr. Dan Poulter "That's absolutely daft". When the HSCIC team protested that any misuse of data would be subject to fines of up to £500,000 from the ICO, Barbara Keeley noted "That's small change to Big Pharma." (Incidentally the ICO were recently lamenting the inability of judges to understand the consequences of privacy breaches and their refusal to impose realistic fines). The appearance culminated in the witnesses being told by Rosie Cooper, MP for West Lancashire, that she had already opted-out because, pointing at Kelsey, Poulter and Jones, "I don't trust you."

To complete the farce, Public Health Minister Jane Ellison, having told parliament the data released by the HSCIC was "publicly available, non-identifiable and in aggregate form", none of which were true, but amply demonstrating the lack of understanding of Care.Data at ministerial level, had to raise a point of order the following day and apologise for misleading parliament, (at least she did apologise, which is a step up on the usual performance from IDS and the DWP).

As if one catastrophic data release wasn't bad enough, it then became apparent on Monday 3rd March that an even worse one had occurred, with PA Consulting (who have form for losing confidential government data, having once lost a data-stick containing unencrypted data on every prisoner in the country) admitting that they had uploaded the complete HES data-set onto Google in order to see what they could do with it:  NHS England patient data uploaded to Google servers Tory MP says. The fact that they were putting it onto data-servers that weren't protected by UK or EU data-protection law, in likely breach of the Data Protection Act, appears never to have crossed their tiny minds. Initial reports that the data was un-pseudonymised and un-anonymised are now being denied, however reference to producing maps from the data in PA Consulting's own report implies they had at least partial postcode data available.

Care.Data cock-ups appear to be running about one story a day at the moment: a company specialising in geographic information systems (potentially just about a perfect platform for breaking anonymisation) were offering access, for a price, to a system which would show you which hospital people seeking particular treatments had selected, with the implication that this was again HES data. HSCIC had them take the system down, but it was then claimed that they were only using mock data, which would make a) the fact they were charging for access, and b) the fact that HSCIC could make them take it down, particularly bizarre. Another company were offering HES data combined with their information on what sort of people lived in a particular post code. Both these operations would require at least partial post-code information to function, raising definite re-identification worries.

After multiple requests in parliament, HSCIC were finally forced to announce on 5th March that they would release an audit of all information released by themselves or NHSIC, with the HSCIC data out in April and NHSIC in May. 

Amendments have now been proposed to the Care Bill to patch up the Care.Data loopholes, but as the proposal allows releases "for the purposes of the provision of health care" it doesn't actually rule much out - even the SIAS case could have been phrased to imply it was to ensure people with particular illnesses weren't disadvantaged when applying for insurance. 

Pseudonymisation, Anonymization and Re-Identification

When it comes to release of data HSCIC has adopted a traffic-light system. "Green data" is anonymous or aggregated and should be immune from re-identification; "Amber data" contains individual data and is supposed to be pseudonymised before release, and "Red data" is personal and confidential information which is supposed to be anonymised if it is released at all. Both anonymisation and pseudonymisation are supposed to prevent data being reverse-engineered to reveal original identity, but the truth is that re-identification is possible, and in fact the nature of health data will make this rather easier than with other data sets due to the degree of individuality introduced by personal patterns of disability and other health issues.

Identifiable data is only supposed to be released with patient consent, however there is a provision to override this using a 'section 251 approval'. Even opting-out will not guarantee that data is inaccessible in these cases as the data will be harvested from GPs and delivered into the Care.Data database whatever your individual opted-in or -out status, it will simply have a flag applied once there to state if you have opted-out, which will restrict it from commercial and research disclosures, but not from a 'section 251 approval' or the law-enforcement back-doors into the database (it isn't clear if these are using section 251 or another mechanism). Rather disturbingly it came out during the session that there was a group within the NHS dedicated to advising how to arrange a 'section 251 approval' and openly tweeting that it can provide this service.

Transatlantic Data Sharing, Risks and Opportunities (for Lawyers that is)

The Data Protection Act makes it illegal to export personal data outside the European Economic Area (EU + EFTA), but 'Green' data doesn't count as it is aggregate not individual, and 'Amber' data might be exportable given pseudonymisation. There is already a memorandum of understanding in force between HSCIC and the US Department of Health with stated aims that include 'Liberating Data and Putting It to Work' and 'Priming the Health IT Market'.

In theory data exported to the US, which has notoriously lax data protection legislation, is protected under the Safe Harbor agreement between the US and the EU, which mandates that US companies holding data on EU citizens protect it to levels equivalent to EU law. Unfortunately the Snowden revelations have made it clear that the NSA has a tendency to treat US databases as an all-you-can-eat buffet, particularly if that data relates to non-US citizens, and happily shares that data back with its partners in the Five Eyes network (the US, UK, Canada, Australia and New Zealand). Cases of confidential medical data of Canadian citizens turning up in the possession of low-level US officials have already been noted (see Disabled woman denied entry to U.S. after agent cites supposedly private medical details). In practise Safe Harbor may be no safer than Pearl Harbor on the morning of 7th December 1941 and the EU is already considering suspending it to force concessions from the Americans over the Snowden revelations.

Specific Risks for Disabled People

I mentioned I had an odd reaction to Gabapentin earlier. It was actually so subtle I didn't identify it until I came off the drug and realised that there was a change in my behaviour, but in trying to get my GP to understand what it was, and why I wasn't prepared to go back onto Gabapentin, a note was made in my medical records, and that note was 'mild depression'. Now I hadn't once told her I was depressed, I certainly wasn't feeling any more down than usual, but my 'a psychologist would probably call it a lack of agency' wasn't a description she was comfortable with (I'm not sure she even understood it), even if it did describe the sudden fall-off in what I was getting done. So my medical records now say I've had an incident of mild depression, even though I haven't. There is a very real stigma attached to depression in the wider community. It is absolutely normal for people to imply that anyone with depression is inadequate, frequently tied into an allegation that depression isn't a real disability, which no doubt is commonly extended to any other disabilities the person in question may have.

God knows what other inaccuracies are in my medical records, the physical bundle is about six inches thick, and there is the electronic data on top. My GP often brings up potential diagnoses for my main disabilities which were considered and discarded years ago, in some cases decades ago (I stay with her because she's usually, eventually, willing to recognise that I'm an expert patient and know exactly what I need). There is, as I understand it, a theoretical right to examine your medical records and demand that inaccuracies are corrected, but for many of us that may be a right that is effectively impossible to enforce, for instance due to issues of Mental Health or Learning Disabilities, never mind the potential damage in patient-GP relations - always a worry for patients with long term disabilities.

Care.Data is supposed to pseudonymize (Amber data) or anonymize (Red data) individual data. The particular problem faced by disabled people over Care.Data is that many of us are uniquely identifiable by our individual combinations of disabilities. Take me: I have Dyspraxia, Hypermobility Syndrome, Chronic Pain Syndrome, and some of the symptoms of Aspergers, though apparently I don't quite qualify as an Aspie. Now that combination isn't unique, it's probably true for about half the hypermobile types I know, but people with that combination living in my postcode, with my age? Even if you broaden out the postcode (first three characters not all six) and smudge the age into a range, you're probably not going to get more than one hit. If you happen to know who my doctors are, then that data becomes even more identifiable, whether it includes my name and NHS number or not.

This might seem like a fairly obscure concern, but disabled people face massive discrimination in recruitment, making it a real concern as to whether or not we declare our disabilities, or all of our disabilities. Some we obviously have to declare, it's difficult to hide the crutches I walk into the interview room with, but with invisible disabilities this becomes a more nuanced decision. Declare, and somehow fail to get the job, or don't declare, miss out on the legal protection that declaring gives, and face problems when finally it becomes essential to declare? The 'Consulting Association' (and the 'Economic League' before them) famously ran a blacklist for major construction companies such as MacAlpine and Balfour Beatty, listing potential employees who were believed to be union activists, 'troublemakers', or dangerous radicals who wanted health and safety provisions enforced, and this only stopped when they were raided by the Information Commissioner's Office in 2009. It is reported one manager working on the Crossrail project made 900 checks against the blacklist in 2008 alone. With the open discrimination against disabled people by many employers and recruiters it is easy enough to imagine someone with a bootleg copy of Care.Data setting up a black-market disability check service for recruiters and HR execs to access under the counter: 'He declared X, I wonder if that's all? Depression? Oh, really? Well he's out, then...." Even anonymization may not be enough to beat this, breaking anonymisation for one record is difficult, for 65 million sets of records it's a minor automization problem, or a business opportunity. If they do it from the States it isn't even illegal.

The campaign group medConfidential have an article showing what's being done with some of the data that has been released. Full identification from the information shown would be comparatively trivial when done on a mass basis, or with background information on the individual in question.

Ben Goldacre gives an example of how to identify someone even without a prominent disability in his article The NHS plan to share our medical data can save lives – but must be done right (the article is in favour of Care.Data but predates the Telegraph revelations, Goldacre has to be complemented for admitting he was wrong in a second article Care.Data is in Chaos a week later)

GP Trust Issues

A point which has been raised by patient advocates, but seemingly failed to gain any traction in the debate between 'the great and the good' is that this system could result in a huge breakdown in trust between patient and GP. There are already tensions in the system when insurers can insist on access to medical records before issuing a policy, but the potential for outside commercial bodies, law enforcement, or DWP to gain access to extremely private medical data, such as AIDS or STD status, details of mental health or other disabilities, and other information towards which stigma exists such as abortions or teen pregnancy has the potential to cause irreparable loss of trust. Just today I saw a suggestion that Care.Data, and potential exposure of the results to insurers, provided a good reason for refusing to take the blood test for dementia that was in the news.

They're Excluding AIDS and STDs, but Nothing Else?

Care.Data apparently recognises that compromising the confidentiality of medical data indicating AIDS or STDs is potentially disastrous, so proposes to exclude it from release, but, as noted earlier, when asked by  Barbara Keeley on the Health Select Committee if that exclusion should not also be extended to mental health indicators, given the marked stigma around them, Dr Dan Poulter, the junior health minister, responded "That's daft!" 

Disabled people will be well aware that it is not just AIDS status, or MH status that may result in not just stigma but active discrimination, it is the possession of any disability of any kind whatsoever. HSCIC and the Department of Health appear either unaware of this, or simply not to care. Disclosure of any disability information whatsoever has the potential to stop a disabled person getting a job, or to destroy a career, and we urgently need Care.Data to address that.

They Gave My Data to WHO?!?

Seeking to extend the organisations who can apply for access to Care.Data, NHS England wrote: "applications may be considered by the HSCIC from all organisations, subject to their eligibility as determined through the HSCIC’s governance processes. Such organisations may include research bodies, information intermediaries, companies, charities and others."

DWP are reported to have applied for access to HES, the Care.Data predecessor in order "to obtain access to confidential patient data to be linked to information about employment, tax credits and benefits claims". While it is possible that this was in pursuit of high level statistical information, the wording appears to specifically indicate that this was a clear attempt to gain access to individual medical records in order to cross-check with data provided during Employment Support Allowance applications, Work Capability Assessments, or DLA/PIP applications. Any discrepancy would likely then be followed by sanctions, or, in the worst case, prosecutions. HMRC are also reported to have requested and been refused access.

While it is encouraging that these initial requests were refused, the problem for disabled people is that the desire to access Care.Data on the part of DWP has been demonstrated, and HSCIC has shown a clear tendency to approve rather than deny access, associated with a wish to further extend the sharing of information. We cannot be sure that future attempts will be denied.

A Guardian article Police will have 'backdoor' access to health records despite opt-out, says MP, reports that former Shadow Home Secretary David Davis has established in a Parliamentary answer from Dr Dan Poulter that the police 'and other government departments' will be allowed warrantless access to Care.Data. 'and other government departments' most likely means the National Crime Agency and the Security Services, but it could mean DWP, or it could be extended to mean DWP. A backdoor for law-enforcement agencies is also very likely to include HMRC, who were previously expressly denied access to HES.

HSCIC have also stated: "Where informed consent is not feasible, a legal basis allowing the sharing of confidential information should be explored. ... Confidential information can be disclosed to support the detection, investigation and punishment of serious crime." Releasing information to support the detection of crime would appear to presuppose use of Care.Data in fishing expeditions where no crime has been demonstrated to exist.

Amongst other entities known to have applied for access to HES, the Care.Data predecessor, are private healthcare companies BUPA and Doctor Foster and the right-wing think-tank the Institute for Fiscal Studies. Some of these were refused, some were passed on the nod without ever going to the full authorisation committee. They do rather aptly demonstrate just how interesting the data is to a range of commercial interests. And all the while Big Pharma is waiting in the wings.

WHO Did You Say is Going to Extract the Data? Atos!?!

The contract to run the 'General Practice Extraction Service', GPES, which will pull the Care.Data info out of GP's medical records for transmission to HSCIC, has been given to Atos. In theory this should be an automated process and shouldn't involve anyone at Atos looking at any identifiable medical records, but in practise problems happen and programmers may need to look at raw data to understand what the issue is, and they may do that without ever realising it is an issue. In fairness to HSCIC they gave the contract to Atos two years ago and probably didn't have a clue how toxic Atos' reputation would be by now, but even allowing for that it is clear that just the possibility of Atos and their medical records coming into contact will be profoundly distressing to many disabled people. I'm certainly not happy with it, and that is as a software engineer who understands it is an automated process.

Interestingly the Atos CEO, Thierry Breton, is in the news after describing Big Data as "a digital gold mine, the oil of the future". 

The Proof of the Problem is in the People

A few select quotes from the NHS side of the debate:

Tim Kelsey, NHS England National Director for Patients and Information (and once upon a time founder of private health care informatics company Doctor Foster, for 50% of which the NHS paid £12.5m):

"No one who uses a public service should be allowed to opt out of sharing their records" Kelsey seems to have been forced to back away from this statement in his role at the NHS, but it likely remains his core belief, and that means any information governance system is likely to gain only grudging support at best. And a system which isn't supported by the man at the top is fatally compromised from the start.

"You can object and your data will not be extracted and you can make no contribution to society" Kelsey answers a critic on twitter and reveals that his thinking really hasn't changed very much, even if he has been forced to make concessions.

"If 90 per cent of patients opt out of care.data, we won't have an NHS." Ridiculous hyperbole is such a compelling argument, particularly when made to the Health Select Committee, who immediately call you on it.

Doctor Dan Poulter, Undersecretary of State for Health:

"That's absolutely daft" on being told that there is a stigma surrounding Mental Health and that information on it needs to be protected. (In fairness he was addressing the need to develop additional information on MH, but he did it by dismissing the risk implicit in Care.Data).

HSCIC says access to individual patients records can "enable insurance companies to accurately calculate actuarial risk so as to offer fair premiums to its [sic] customers. Such outcomes are an important aim of Open Data, an important government policy initiative." This is in its own information governance assessment, which in effect means it thinks there should be full disclosure of identifiable patient information to commercial entities for their own gain, effectively no information governance whatsoever. Interestingly Kelsey has been described by Ben Goldacre as having "drunk more open-data Kool-Aid than anyone I've ever met".

Sarah-Jane Marsh, Chief Executive of Birmingham Children’s Hospital, speaking on a panel with Tim Kelsey at Health and Care Innovation Expo, just last week and after the fiasco became clear:

“Security trumps patient safety every time. It is our duty to challenge this principle." Er, no, it is your duty to implement both simultaneously!

Never Fear, Jeremy Hunt Will Save Us

Yeah, right, the Health Secretary has such an unblemished record on commercialization of the NHS - never an opportunity missed - that it seems odd that we should be reliant on him to put things right. Having watched the fiasco unfold, Hunt has decided to ban the release of pseudonymized 'Amber' data unless there are clear health benefits, and to ban the release of data for commercial purposes, while subjecting HSCIC to audit by the ICO. The problem is that HSCIC and its predecessor have repeatedly blurred, or deliberately obfuscated, the barriers between commercial purposes and health benefits, the SIAS release being a case in point. There is an upcoming EU General Data Protection Regulation that should be less subject to ideological bias towards business, however the Coalition, in the form of Lib Dem Justice Minister Simon Hughes, have been trying to systematically weaken this. However both of these fail to address the systematic security risks of concentrating all patient data in a single national database, creating a Holy Grail for hackers, security risks once the data is redistributed, and the whole re-identification issue. A complete solution to the risks these are not. Also, relying on Jeremy Hunt? Something of an oxymoron.

So What Should I Do Now ?

If you are a hopeless optimist like me, and see value in the basic aims of Care.Data then hang on for a few months in the hope that HSCIC pulls off a miracle and gets a proper system of governance in place. As this involves 1) Jeremy Hunt, 2) Tim Kelsey and 3) HSCIC, all of whom are currently in denial that there are governance issues at all, then just imagining the possibility of a miracle is probably hopelessly optimistic, in which case follow the instructions in the next two paragraphs at some point before Care.Data goes live.

If you are a realist, concerned about your medical confidentiality, concerned about any of the organisations listed above trying to access your medical data, or worried that your health means that you may not be in a fit state to make decisions in a few months, then my reluctant recommendation is that you opt out now, and that you opt out the rest of your family. There is an interesting ethical dilemma for anyone in a guardianship position, and I wonder if that doesn't mean they are ethically obliged to opt-out the person they are guardian to, whatever they decide for themselves.

Details of how to opt out of Care.Data are available at several sites, the clearest explanation I've found, additionally offering the opt-out letter in multiple formats, is on the Big Brother Watch site.

And Finally

If you read all of this, then you deserve a break, I recommend the excellent Care.Data Downfall parody.

I just got a weird phone call...

Woman from my local Job Centre: We're just updating our notes. So what are your aims?
Me: I thought these kinds of questions were only for people in the Work Related Activity Group?
JC: No, we're asking people in the Support Group. It's because you're in the Support Group that we're doing this over the phone rather than asking you to come in in person.
Me: Well I don't have any aims. Given the state of my health, aspiring to do something would just be false hope.
JC: It says here that you're interested in stand up comedy...
Me: Yes, that's what I used to do before I became too ill to carry on.
JC: Was you like on TV? Or comedy clubs?
Me: I only got to do stand up for two and a half years before I became too ill to carry on. No-one makes it onto TV in only two and a half years.
JC: So, has your health deteriorated?
Me: Not really since my last Atos assessment in December 2012. I've gotten a couple of new diagnoses, but nothing significant.
JC: [slightly concerned] But you're OK though, right?
Me: Not really, no!
JC: OK. That's fine. If you ever come in here ask to see me, [name].

As Latentexistence says:

@lisybabe Well that's worrying. They could easily make things much worse if they call some people.

— Tentacle Sixteen (@latentexistence) March 4, 2014

Edited to add: I should have mentioned that I didn't answer on the first go. During the 30 hours prior to this conversation, she'd tried to call 3 times while I was asleep.

Are Atos about to Bail Out of All Occupational Health?

In one of those sick ironies of the Atos WCA regime, there were several stories of Atos's corporate Occupational Health service finding people unfit for work, only to have their WCA arm find exactly the same person, with exactly the same symptoms, fit for work

A new blog from Dr Greg Wood, the Atos whistleblower, points out that the Atos corporate OH service has quietly migrated itself off the Atos Healthcare website and now lives under an assumed identity as OH Assist with the only mention of Atos on the front page being a tiny acknowledgement that the website is by 'Atos IT Services UK Limited 2014', and in fact that sanitising of any reference to Atos seems to be pretty much site wide.

If you go to the Atos Healthcare website, it now states only that "Atos Healthcare conducts assessments on behalf of the Department for Work and Pensions." All mention of corporate OH has disappeared. A quick whois check on the OH Assist domain name suggests it was registered on 5th December, so this has been in process for several months, though it is difficult to tell when the website changes went live.

There are several possibilities here:
As Dr Wood suggests, that the Atos Healthcare brand is now so toxic that they can only preserve their corporate OH service by separating it from their own corporate ID and branding.

A spin off from this would link it to the story broken by John Pring and Disability News Service a couple of weeks ago, Doctor recruitment crisis leaves Atos begging for help, that Atos are finding it impossible to recruit doctors to Atos Healthcare, in which case hiding the corporate OH service's toxic parent identity may be the only way it can now recruit staff,

But there is a third, even more startling, though long overdue possibility, the separation of the corporate OH service onto a different website and the complete firewalling of it away from Atos branding, may be clear indicators that it is being prepared for sale, and that, when combined with Atos's 'Oh, woe is poor little bullied me' whinging in the Telegraph last Friday, strongly implies that Atos may be about to bail out of all involvement with Occupational Health, whether corporate or government led.

It is becoming very apparent that the campaign has worked, that the Atos corporate brand is now so toxic that Atos themselves are becoming unable to conduct work only marginally related to the WCA and may be in the process of selling up and doing a fly-by-night flit in the hope of saving what they can. Of course the tragedy is that the campaign was ever necessary, WCA was always flawed, but Atos had the opportunity to become a force for good in trying to make it work. Sadly they aligned themselves with DWP and against disabled people and sealed their own fate.

Of course the fight against DWP goes on until WCA is replaced with an assessment process that is fit for purpose and which meets the needs of disabled people. So, IDS next?

No more repeat Work Capability Assessments until Atos replaced

Some huge news has emerged today after a Freedom Of Information request by the Benefits and Work website.

It appears that the DWP have suspended all repeat Work Capability Assessments with Atos. This means that those who currently receive Employment Support Allowance and are in the Support Group or the Work-Related Activity Group will not be called back for repeat assessment unless the DWP are informed that their health has changed. This appears to be a move to clear the backlog of those in the Assessment Phase of ESA who are waiting for Atos to call them in for a WCA. It is unclear how this might affect the migration for those who still receive Incapacity Benefit. According to Benefits and Work the DWP memo states:

“The number of cases currently with Atos Healthcare has grown. A decision has therefore been taken to control the referral of repeat work capability assessments. Therefore, with effect from 20 January 2014, further routine repeat assessments referrals to Atos will be deferred until further notice.

“Controlling the volume of repeat Work Capability Assessments should help us to reduce delays for new claimants and those that have already been referred.”

Benefits and Work also claim that the DWP did not intend to inform either MPs or claimants. The uncertainty over the timing and outcome of the WCA is a huge problem for most people who rely on ESA and the knowledge that they will be left alone in the near future would be a great help so it is a further sign of cruelty that the DWP don't care enough to inform anyone.

Dr Greg Wood put some speculation into the thinking behind this decision on his blog in the form of a fictional memo - Work Test Whistleblower: A Note For The Minister?

Source: Benefits and Work: All repeat WCA medicals to be stopped

Atos Smears Disabled People for WCA Failure

It would have seemed hard for Atos to further worsen its appalling reputation on the Work Capability Assessment, but in a blatant PR puff-piece in the Financial Times it seeks to create an impression it wants to withdraw from the WCA because of repeated death threats to its staff by disabled campaigners.

“Outsource group seeks exit from UK £500m benefits contract after death threats”

 According to the FT “Atos Healthcare said the political environment had become untenable and that it was no longer fair to employees to leave them vulnerable to attack. ‘It is becoming incredibly difficult for our staff; it’s pretty unpleasant,’”

‘it’s pretty unpleasant’ seems rather ironic given the hundreds of thousands of disabled people repeatedly subjected to the incredibly distressing WCA by Atos.

Now death-threats are clearly unacceptable, but what is particularly interesting here is Atos have never before alleged their staff were at risk, and they had the perfect opportunity in front of the Work and Pensions Select Committee barely a month or so ago. When it comes to unacceptable behaviour, the focus has rather been on Atos staff indulging in such unprofessional behaviour as homophobic rants to patients, or attacking claimants as ‘scroungers’ on social media. Indeed the BMA found it necessary to remind doctors working for Atos that basic honesty was a professional requirement.

The true explanation for Atos’ behaviour may be revealed further into the article, where it admits ‘The French IT company has been in discussions with the Department for Work and Pensions with a view to exiting the deal since October last year, because it views the tests as “outdated”. “In its current form it is not working for claimants, for DWP or for Atos Healthcare,” Atos said. “For several months now we have been endeavouring to agree an early exit from the contract, which is due to expire in August 2015.”’

In other words the campaign by disabled people to reveal the truth about Atos and the WCA has been so successful that it has destroyed the company’s reputation in the UK and it is desperate to find a way out.

Atos could simply have said ‘We are being asked to implement a policy that doesn’t reflect the needs of those subjected to it,’ and guaranteed themselves a PR win for being mature enough to admit when they are wrong; but, in an absolutely classic example of bullying behaviour, Atos seeks to turn its disabled victims into the aggressors for forcing the truth of their behaviour into the public conscience, and there we find the true measure of Atos.

#BigBenefitsRow

On Monday night, Peter Stringfellow pointed to Mik, MJ and me on live TV and said:

I'm looking at people over there who obviously deserve everything they can get.

Apparently what we didn't deserve was a place at the grown up table to discuss the issues that affect us. Sue has blogged about how she was pulled from the line up with 2 hours notice. meaning there were no benefit-claiming disabled experts to talk about the cuts. People have pointed out that White Dee claims ESA for depression; so there was at least one disabled person on the panel. But firstly, we don't know if she identifiess as "disabled". It's possible she doesn't because so many people view being disabled as such an horrific and revolting thing. Secondly she claims benefits; but she's not an expert on them. People like Sue and me are. We can tell you the fraud rates for disability benefits off the top of our heads. We can gives you names of people who died from their conditions while supposedly "fit for work".

(OK, I know I'd never get invited to be on the panel if there was literally anybody else available. Media types only call me when their first choice is unavailable. I know I'm not cool or popular or particularly liked among the prominent left. And that's OK; I've never been popular and I'm used to it.)

But given that disabled people are more hit by the cuts than any other group of people; they shouldn't have just kept Sue and Dee in the line-up: They should have had additional disabled people up there too. There's a saying among disability rights activists that's been around as long as I can remember; it's possible the statement is older than I am. That saying is "nothing about us without us". And Monday night's debate was almost exclusively about us, but apart from Dee (and Mik managing to get about 3 seconds of soundbite out) it was definitely without us.

But I want to go back to Stringfellow's comments about what we "deserve" and what we "get".

When he said it; I laughed. Loudly. But then I always laugh loudly. My laugh carries for miles; just ask most of this country's comedians. I laughed so loudly that it was my only verbal ejaculation of the evening that was picked up by the microphones. (And I really put effort into heckling in an attempt to be heard; the laugh was just my normal laugh.)

I laughed because the support we get is being cut to the bone. Employment and Support Allowance cuts, Disability Living Allowance cuts, council tax benefit cuts, the bedroom tax, severe disability premium cuts, social care cuts, NHS cuts. Do we deserve that?

What we do currently get - and what we get an increase in every time papers run front pages calling us "scroungers" - is hate.

Disabled people get called "scrounging cunt" in the street for going out while visibly disabled. WtB's Pippa got followed home by someone shouting "fucking DLA stick.". I've been told that I should have been killed at birth to save the taxpayer money.

What we get is told that we're not allowed nice things. When I first got an iPhone I sustained abuse for it. The person abusing me didn't care that it was a Christmas present to replace my broken CrapBerry; disabled people are simply not allowed to own nice things. The media has an obsession with benefit claimants and the size of our TVs. Last autumn I had a TV crew in my living room. Before I was willing to start talking to camera I made them show me the shot so I was sure my telly couldn't be seen. My TV is shit: You can't have the aerial cable and an HDMI cable plugged in at the same time or they cause each other interference. But you can't see the fault from just looking at it (unless you're trying to watch a DVD with the aerial cable plugged in), so if my telly had been shown during my 4thought; the next day the Daily Mail's front page would've said "outrage as benefit claimant owns flat screen TV." Poor people owning stuff really seems to get under people's skin; no matter the circumstances in which they acquired said things.

There have even been cases of people who don't claim a penny in benefits getting abuse for being "scroungers" for merely looking disabled.

Do we deserve that?

Do we deserve to never be able to afford holidays? To only be able to afford Primark clothes? To not be able to upgrade to a TV without a fault? To know that this financial struggle is going to last your whole life because you're an "incurable"?

Katie Hopkins kept claiming that she was there to represent "hard working Britain". What about the 58 year old with cancer who has been working hard and paying National Insurance premiums for 40 years, but has just been refused ESA? That is the whole point of National Insurance. Because disabled people weren't allowed to be part of the debate; no-one pointed out that the system is there precisely to protect hard working Britons.

Hopkins also brought up the number of people being found "fit for work": Because there were no experts on disability benefits on the panel; no-one pointed out that that includes fatally ill people like Larry Newman or Cecilia Burns. I tried heckling "that includes terminally ill people!" But when I watched the show back, I realised that I hadn't been picked up by any of the mics around the room.

She then went on to claim that chancers are pulling out of the ESA process before being assessed by Atos because they're frightened of being caught out. There are all sorts of reasons people stop their claims, including dying. Again I tried heckling "that includes people who've died!" But again went unheard by the audience at home.

Coming from a stand up background, I hate hecklers. I hated having to heckle. But seeing as the producers wouldn't let any disabled people up on the stage to rebut these distorted claims, I was left with no choice but to try shouting.

Before the cameras started rolling, the floor manager told us that if we had something to say; we should say it. She said she didn't want people to leave feeling that they'd not had their voices heard. The lack of disabled people's representation up on that stage meant that voices like mine weren't heard. With the exception of Dee, Jack Monroe and Annabel Giles; the voices we heard from were people who have no idea how miserable life on benefits is, and how cruel people can be to those perceived as "scroungers". Yes, a couple of other people said that they know people on benefits and are aware of their struggles; but trust me: Unless you've lived this, you really don't know just how horrific it feels.

Benefits Street might have made this country obsessed with talking about benefits. It might have made benefits issues a guaranteed ratings winner. But unless you let the people affected by these issues use their own voices in these debates; you've just got people pointlessly arguing for an hour. 'Nothing about us without us' my backside.

Here We Go Again

Where's the Benefit has already asked What does it mean when one million people are found fit to work?, but when that story hits every press outlet, and when the DWP Press Office has been tweeting repeatedly about it today, it becomes apparent that DWP are launching yet another campaign aimed at demonising disabled people as benefits scroungers.

There is something everyone should understand about Employment and Support Allowance before going any further into dissecting the disablist bile that spews from DWP. Employment and Support Allowance was designed to cover two distinct forms of sickness and disability. In dealing with long term sickness and disability it functions as the successor to Incapacity Benefit, but unlike Incapacity Benefit it was deliberately designed to also cover short term sickness and disability, acting as a safety net for people who exhaust the provisions of Statutory Sick Pay or who fall ill while claiming JSA, but who are not expected to be disabled or sick over the longer term. Anyone who is made redundant from a job for medical reasons is also required to claim ESA rather that JSA, even if it is patently obvious that they will never pass the WCA. In other words, the design of ESA means that there will be a steady stream of people who are turned down for ESA after the Work Capability Assessment, or who withdraw their claims before getting to WCA. This is the system working as intended, it provides no evidence whatsoever of even a single case of fraud. 

In addition to these designed-in reasons for being rejected at WCA we then have to include people who are awarded ESA on appeal after initially being rejected. This runs around one claim in six, so something like 166,666 out of that million being trumpeted by DWP were actually disabled people who should have been awarded ESA if Atos and DWP were operating the WCA correctly. We then have to consider the likely existence of people with legitimate claims for ESA who withdraw their claims before WCA because of the hostile environment cultivated by DWP. It is difficult to determine how large this group is, but it certainly exists as I am in that situation myself, I passed WCA and was in receipt of ESA, but the WCA experience was so traumatic that when it came time to renew my claim I found myself facing panic attacks. If that can happen to someone with a primarily physical disability, then the likelihood is that it will affect many more people with mental health issues and that the number of people involved is significant.

Beyond that, the Work and Pensions Select Committee, in examining support provided to benefit claimants made it very clear that someone denied ESA and put onto JSA instead may still be very significantly disabled, so in fact were perfectly entitled to make a claim on ESA. This will overwhelmingly apply to people previously in receipt of Incapacity Benefit, and their being refused ESA reflects not the rooting out of some long term fraud, but the increasingly harsh and medically illogical WCA regime.

Does @DWPPressOffice address any of this? No, instead we get:

DWP Press Office @dwppressoffice

Almost a million new Employment and Support Allowance claimants found fit for work since 2008 - a third of all claims bit.ly/1aCe7Er

The link in the tweet is to the DWP’s press release, which opens with:

“Almost a million people who applied for sickness benefit have instead been found fit for work, new government analysis reveals today” under a banner headline saying almost exactly the same thing. Now DWP will probably argue that at no point do they mention fraud, but the press release is clearly constructed to allow people to leap to that conclusion before providing any context that might allow them to understand that that is not in fact the case. After criticism from the Work and Pensions Select Committee, the National Audit Office, and basically everyone else but their own ministers, DWP have become very good at saying things without actually saying them, which then allows DWP ministers to claim that they are shocked, shocked I tell you that anyone could read their press release and assume it was claiming that 1 million disabled people are attempted frauds (2 million if we count those who withdrew their claims). Repetition is emphasised in communications training, if you want a particular point to get across, you make it multiple times, and here DWP have shoved that 1 million claimants were fit for work message down our throat twice before we are out of the first paragraph. I think they are trying to tell us something….

The press release also notes:

“A decision on whether someone is well enough to work is taken by DWP decision makers based on all of the available evidence. Many claimants will be assessed by an independent health professional as part of the process. All the supporting medical evidence from GPs and specialists is taken into account.”

This is a view of the WCA process that for many disabled people will find sadly lacking in its connection to reality.

A little later @DWPPressOffice also tweeted this:

DWP Press Office @dwppressoffice

Over 121,400 people in London who tried to claim ESA were actually found fit for work after thorough assessments: bit.ly/M4KJLn

The line about ‘thorough assessments’ was met with derision by those who know the details of the WCA at first hand. The link in the tweet is to an Evening Standard article with the lovely headline ‘One in three Londoners on sickness benefits deemed 'fit to work', figures reveal’, though the article itself gives a fairer assessment of the situation by pointing out the opposing views of disabled people. That @DWPPressOffice thought it appropriate to post the link is particularly odd, essentially DWP is quoting the press quoting the DWP as though that somehow makes their case stronger. The ‘who tried to claim ESA’ is a particularly interesting way to construct a sentence as it carries a built-in implication that they had no legitimate right to make the claim.

The deepest irony about all this disability hate is that DWP have picked the 27^th January to up the ante, and 27^th January is Holocaust Memorial Day, which remembers not just the Jewish victims of the Holocaust, but all the other victims of the Final Solution, including the 200,000 disabled victims of Aktion T4!, the extermination campaign against German disabled people. Painting disabled people as frauds says a lot about an organisation, but doing it on Holocaust Memorial Day may have shown us that DWP is beyond redemption.

What does it mean when one million people are found fit to work?

DWP says almost one million sick found fit to work reports The Huffington Post:

A third (32%) of all new claimants for employment and support allowance (ESA) were assessed as being fit to work and capable of employment between October 2008 and March 2013 - totalling 980,400 people, the Department for Work and Pensions (DWP) said.

We've now had five years of reporting the numbers of people turned down for ESA as some kind of success story; they're getting disabled people back into work. A third of those who claimed ESA are being found fit to work. Welfare Reform is justified!

Those turned down for Employment and Support Allowance are not necessarily making false claims. They may be fit to work but have not understood the rules, or they may be unable to work but have struggled to fill in the form in such a way that conveys this. Some of those turned down may have had a good case for appeal (40% of appeals are successful), but couldn't face the ordeal. The fact that this complex and mixed group number a million people (or strictly speaking, a million claims) seems unremarkable.

The criteria for Employment and Support Allowance are much stricter than those of Incapacity Benefit, the process takes many more months, with many people either dying, getting better or giving up before a decision is made and some claimants' benefit is stopped after the first year if they have savings or a working partner. Despite this, there were still 2.49 million people on ESA and other incapacity-type benefits in 2013, against the 2.6 million on incapacity benefits in 2008.

Reform to this benefit, at massive cost to government, a very great deal of  personal stress, heartache and hardship for disabled people and their families, as well as a media-driven regression in social attitudes towards disabled people, has only succeeded in reducing the numbers on this kind of benefit by 110,000 people or a little over 4%.

This is what has been achieved since October 2008; there are a little over four percent fewer people on ESA and related benefits than before. It is unclear whether or not the incapacity bill - either in terms of benefits or the cost of assessing for and administering benefits -  has been reduced. A stable 40% of appeals against ESA decisions are successful. Fraud levels (around 0.3%  for incapacity benefits) remain stable.

Meanwhile, the vast majority of those found "fit to work" will have simply moved onto other kinds of benefits such as Job Seeker's Allowance. Disabled people who are fit to work remain unlikely to actually get work, largely due to discrimination.

.@George_Osborne plans another £25 billion in cuts, and wants to take around half of it from welfare

So I'd like to introduce Mr Osborne to few people:

Shaun Pilkington shot himself after his Employment and Support Allowance was stopped.

Tim Salter hanged himself after his benefits were stopped.

Victor Cuff also hanged himself after his sickness benefits were stopped.

Visually and mobility impaired Jacqueline Harris took an overdose in November after she failed the Work Capability Assessment in which she was only asked one question.

David Barr, who had mental health problems, took his life after his benefits were stopped. Posthumously the DWP admitted they were wrong and reinstated his award. Bit late...

There was the well-known case of Stephanie Bottrill who was unable to work due to Myasthenia gravis, and walked in front of a lorry because she couldn't afford the bedroom tax.

Nicholas Barker had been a farmer and was left hemiplegic after a stroke. He shot himself after his benefits were stopped.

Peter Hodgson was left unable to work after a brain haemorrhage and a stroke. He killed himself too.

Martin Rust was schizophrenic. His health had been improving until the DWP found him Fit For Work. The stress resulted in his suicide.

Craig Monk was an amputee with a history of depression and had taken overdoses in the past. He thought his benefits had been stopped and hanged himself.

Elaine Christian was so terrified of her Work Capability Assessment that the day before she slashed her wrists and took an overdose of co-codamol before drowning herself in a drain.

Paul Willcoxson was actually a JobSeeker, not someone claiming sickness benefits. He did, however, have a history of depression. He was so scared knowing benefit cuts were on the horizon that he killed himself.

Richard Sanderson was likewise a JobSeeker. He killed himself after his housing benefit was cut.

These are just the suicides, and these are just the people who've killed themselves due to benefit cuts since the coalition came to power. There were also the deaths of Paul Reekie and Leanne Chambers who killed themselves shortly before the coalition decided to expand on Labour's benefit cuts.

Then there were the people with conditions exacerbated by stress who died of natural causes because of the stress of benefit cuts.

Karen Sherlock had to spend the last months of her life using energy she didn't have fighting for the benefits she was entitled to. She was finally awarded them a few days before her heart gave out.

David Groves died of a massive heart attack the night before his Work Capability Assessment.

Brian McArdle had had several strokes. Despite this leaving him visually and mobility impaired; he was found Fit For Work. He collapsed in the street and died from a heart attack the next day.

Colin Traynor had epilepsy. He had a fatal seizure shortly after being found Fit For Work. His parents believe it was the stress that triggered the fatal seizure.

How much longer does Osborne want this list to be?

Breaking News : Government Reviewer Opposed Rollout of ESA

In 2008, Labour introduced a new out of work sickness benefit, Employment and Support Allowance, to replace the old Incapacity Benefit.

The new system of application and assessments was much tougher, and politicians originally hoped that up to a million people could be moved from the benefit.

However, by 2010, it was clear there were significant flaws in the process. People with mental health and fluctuating conditions were not being fairly treated and successful appeals against “fit for work” decisions soared to 40%.

Professor Harrington was asked to review the new benefit and make recommendations for improving it. As the election took place in 2010, crucially, only new claimants were being assessed. ESA was yet to be rolled out to the more complicated, and often longer term, Incapacity Benefit claimants, though trials were underway in Burnley and Aberdeen.

Most people claim out of work sickness benefits for short periods – perhaps to get through a sports injury, accident or one off surgery – and stop their claims within 2 years. However, this will always leave a few people with serious, life limiting conditions who will need to claim the benefit for longer periods. Over the years, those claims build up, increasing the proportion who need long term support.

When the coalition came to power in May 2010, they immediately announced that they would go ahead and start to reassess those already claiming Incapacity Benefit.

I could never understand this decision. Why would you take a failing benefit and roll it out to almost 2 million of the most vulnerable claimants? Not only that, but at first, just 25,000 people per month were being assessed, but the government constantly increased and increased the numbers until today, nearly 130,000 assessments are carried out every month.

Why? Why would you rush this group through failing assessments, ever faster, when backlogs kept on increasing, tribunals were overturning 40% of decisions that went to appeal and even legally, courts were starting to judge that the test discriminates against certain groups?

Unless of course you don’t want the tests to be fair. If your aim is to remove a million people from the benefit, perhaps it suits you to make sure that as many of those existing claimants don’t face a fair test? Since 2010, the government have repeatedly delayed improvements to ESA. Out of 25 recommendations made by Professor Harrington in his Yr1 Review, almost two thirds have not been fully and successfully implemented. An “Evidence Based Review” using new descriptors designed by mental health charities and those charities representing people with fluctuating conditions was initially rejected, then taken on, but although results were due in June, still, tests use the old descriptors to decide who qualifies for support. *

The government repeatedly claimed that Professor Harrington had supported the national rollout of incapacity benefit claimants

“Professor Harrington went away and made his recommendations to us, which we accepted in full and have implemented. He told me, “I believe the system is in sufficient shape for you to proceed with incapacity benefit reassessment.” We set ourselves a goal to put his recommendations in place, improve the quality of the process and address many of the issues to which hon. Members have referred today by the end of last May, when the assessments in the incapacity benefit reassessment were to start alongside the existing process of assessing ESA new claimants. We did that, and we started."

1 Feb 2012 : Column 289WH Hansard Chris Grayling
However, Harrington was clearly an intelligent man who had made thoughtful and intelligent suggestions for improving the assessments. I could never understand why he agreed to put the most vulnerable claimants through a failing test.

So I decided to ask him.

It took me a while to track down his email address, but after pulling lots of strings, I was able to ask him outright.

This was Professor Harrington’s reply :

“To your question:

I NEVER---repeat--NEVER agreed to the IB migration. I would have preferred that it be delayed but by the time I said that, the political die had been cast.

I then said that i would review progress of that during my reviews.

The decision was political .

I could not influence it.

IS THAT CRYSTAL CLEAR?

Malcolm”

I’d say it was fairly clear, wouldn’t you?

Ian Duncan-Smith and others took the decision to push nearly 2 million people through a failing test as quickly as they could. Why? Was it so that they could remove as many people as possible from the benefit whether they needed it or not? Surely any failures to improve the test as recommended by Harrington, charities and campaigners couldn’t have been deliberate? Delaying improvements until the IB cohort had been rushed through, the cohort this government and others are convinced are simply “scroungers” and “skivers”?

Instead, as we now see, delays have increased, successful appeals have risen, lives have been lost to the sheer inaccuracy and flawed design of the assessments and the human suffering is now clear for all to see.

To have taken the decision through incompetence is bad enough, but if it was taken deliberately and cynically, I can only hope the responsible ministers will be held to account. Over 200,000 incorrect decisions have since been overturned in law and appeals are taking up to a year to be heard in some areas.

When David Cameron came to power he said :

"The test of a good society is how do you protect the poorest, the most vulnerable, the elderly, the frail.

That's important in good times, it's even more important in difficult times. People need to know that if they have me as their Prime Minister and they have a Conservative government, it will be that sort of Prime Minister

Iain Duncan-Smith said :

“I say to those watching today and who are genuinely sick, disabled or are retired. You have nothing to fear.

This government and this party don’t regard caring for the needy as a burden. It is a proud duty to provide financial security to the most vulnerable members of our society and this will not change. This is our contract with the most vulnerable.”

I look forward to them explaining what made them change their minds.


Today, we must be our own media. Please RT on twitter, share on Facebook and help me to make sure that as many people as possible see this news.

*Coincidentally, the evidence based review was released yesterday, as I was writing this article.https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/265471/wca-evidence-based-review.pdf