At today’s Global Disability Summit, the government will present itself as a leader on disability rights – disabled people know that it is anything but.
Today the government will host the Global Disability Summit in London but the Tories are no world leaders on disability rights – their record is abysmal.
The government’s hypocrisy is no more clearly demonstrated than in the fact that the Secretary of State hosting the summit – which is aimed at guaranteeing “the rights, freedoms, dignity and inclusion” of disabled people – is Penny Mordaunt, who was herself minister for disabled people when a UN report found that the government had violated disabled people’s rights.
The UN published this report two years ago, after the UN Committee on the Rights of Persons with Disabilities had taken the unprecedented step of investigating one of its signatories – the UK government – for breaching its obligations under the UN Convention on the Rights of Persons with Disabilities.
The committee’s findings were unambiguous: The government had caused “grave and systematic” violations of disabled people’s rights. The committee chair described austerity as having led to a “human catastrophe” for disabled people.
These judgements were hardly news to the millions of disabled people who had been struggling under government policies.
The hypocrisy of the government is staggering. The Minister for Disabled People recently had the audacity to claim that she was “utterly committed” to the UN Convention on the Rights of Persons with Disabilities”, yet the government is still yet to even provide a detailed response to the UN Committee’s more than 80 recommendations, and it rejected the UN’s damning judgement out of hand.
This hypocrisy is starkly evident in the summit’s “Charter for Change”, which takes as its cornerstone the UN Convention on the Rights of Persons with Disabilities. Since the Secretary of State overseeing the summit was a former Minister for Disabled People in a government that was condemned by the UN for breaking that convention, how can she talk with a straight face to world leaders and disabled people’s organisations about this?
The charter includes 10 commitments for participants to agree to, 8 of which the government has itself clearly violated (and one of which is empty posturing).
For example, it calls on countries to commit to “gather and use better data and evidence to understand and address the scale, and nature, of challenges faced by persons with disabilities”.
Yet one of the major recommendations from the committee is for the government to carry out a cumulative impact assessment of its tax and social security changes since 2010, something the government has stubbornly refused to do.
We know this can be done – the Equality and Human Rights Commission has done it, finding that those changes had a particularly damaging impact on disabled people.
Another call of the charter is for countries to “eliminate stigma and discrimination through legislation”. This will sound like a bad joke to the estimated 220,000 disabled people wrongly denied social security support due to what the High Court called “blatantly discriminatory” changes to Personal Independence Payments.
The charter concludes with a commitment to “hold ourselves and others to account for the promises we have made here today.” For this commitment to be made by Mordaunt’s department – under whose watch the government excused itself from promises it was committed to as part of the UN Convention – beggars belief.
This government treats disabled people with disdain and contempt. From the Bedroom Tax to swingeing cuts to Personal Independence Payments, government cuts have been felt most acutely by those already struggling.
The Department for Work and Pensions charge sheet of failures is long, including an “error” that led to more than 70,000 ill and disabled people being underpaid thousands in Employment and Support Allowance, with what a public accounts committee recently described as a “culture of indifference” leading to it taking six years for this error to begin to be corrected.
The government’s Work Capability Assessments, carried out by profit-driven private companies, have been linked to a dramatic increase in the number of disabled people attempting suicide.
At the Global Disability Summit, the government will try to present itself as a world leader on disability rights. But disabled people know that it is anything but.
Let us remind them of the verdict of the United Nations: “Grave and systematic” rights violations, a “human catastrophe” for disabled people.
On behalf of all those disabled people whose voices have been ignored, we cannot and will not let the government escape the truth. Their record on disability rights shames this country.
I write voluntarily, and do the best I can to raise awareness of political and social issues. In particular I research and write about how policy impacts on citizen wellbeing and human rights. I also co-run a group on Facebook to support other disabled people going through ESA and PIP assessments, mandatory reviews and appeals.
I don’t make any money from my work. I am disabled and don’t have any paid employment. But you can contribute by making a donation and help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.
Part 1 of this article is from the Press Association and part 2 is written by me.
The Department for Work and Pensions (DWP) has spent more than £100m in just over two years on administering reviews and appeals against disability benefits, figures show.
Tens of millions of pounds a year are also spent by the Ministry of Justice on the appeals, about two-thirds of which were won by claimants in the past 12 months.
The costs were described as “staggering” and a former Conservative minister said “something is seriously wrong with the system”.
But the department is facing questions from the work and pensions select committee over the figures, following claims that it was not given similar information forMPs’ inquiry into PIP and ESA.
Figures obtained through a freedom of information request show the DWP has spent £108.1m on direct staffing costs for ESA and PIP appeals since October 2015.
“Thousands of disabled individuals have had to fight to receive support to which they are legally entitled.”
Since October 2015, 87,500 PIP claimants had their decision changed at mandatory reconsideration, while 91,587 others won their appeals at tribunal.
In the first half of 2017-18, 66% of 42,741 PIP appeals went in the claimant’s favour.
The figures for ESA since October 2015 show 47,000 people had decisions revised at mandatory reconsideration and 82,219 appeals went in the claimant’s favour.
So far in 2017-18, 68% of 35,452 ESA appeals have gone in favour of the claimant.
Ros Altmann, a Conservative peer and former DWP minister, said the money could be spent on benefits for those who need them, rather than the costs of fighting claims.
Figures released to the select committee inquiry show further costs to taxpayers.
The Ministry of Justice spent £103.1m on social security and child support tribunals in 2016-17, up from £92.6m the year before.
In a letter to the committee, the then justice minister Dominic Raab said the average cost of an appeal had more than doubled to £579 in 2014-15 because PIP cases “now comprise a much larger proportion of the caseload” and require more members on the tribunal.
The MPs are due to publish the results of their inquiry on Wednesday.
Frank Field, the committee chairman, has written to Esther McVey, the work and pensions secretary, to ask why MPs were not given the information.
The DWP gave the committee the average cost of a mandatory reconsideration and appeal for PIP and ESA, but Field said it was unable to work out the full cost because information on whether PIP appeals were from new claimants or those being reassessed, which have different costs, was not available.
“That this data was provided in response to an FoI request, but not for our report, is doubly regrettable, since the key theme of our report is the need to introduce much greater trust and transparency into the PIP and ESA systems,”Field wrote.
A DWP spokeswoman said it was working to improve the process, including recruiting about 190 officers who will attend PIP and ESA appeals to provide feedback on decisions.
“We’ve already commissioned five independent reviews of the work capability assessment, implementing more than 100 of their recommendations, and two independent reviews of PIP assessments,” she said.
“Meanwhile, we continue to spend more than £50bn a year on supporting people with disabilities and health conditions.”
— Part 2
I’ll add to this, however, that according to theOffice for National Statsitics(ONS) spending on sickness and disability, combined with social care costs was £53,275bn for 2016/17. Sickness and disability benefit spending was £43,545bn, and personal social services was 9,730bn.
The National Audit Office (NAO) scrutinises public spending for Parliament and is independent of government. Anaudit reportin 2016 concluded that the Department for Work and Pension’s spending on contracts for disability benefit assessments was expected todoublein 2016/17 compared with 2014/15. The government’s flagship welfare-cut scheme will be actually spending more money on the assessments themselves than it is saving in reductions to the benefits bill – as Frances Ryan pointed out in the Guardian, it’s the political equivalent of burning bundles of £50 notes.
The report also states that only half of all the doctors and nurses hired by Maximus – the US outsourcing company brought in by the Department for Work and Pensions to carry out the assessments – had even completed their training.
The NAO report summarises:
5.5 Million assessments completed in five years up to March 2015
65% Estimated increase in cost per ESA assessment based on published information after transfer of the service in 2015 (from £115 to £190) 84% Estimated increase in healthcare professionals across contracts from 2,200 in May 2015 to 4,050 November 2016
£1.6 billion Estimated cost of contracted-out health and disability assessments over three years, 2015 to 2018
£0.4 billion Latest expected reduction in annual disability benefit spending
13% Proportion of ESA and PIP targets met for assessment report quality meeting contractual standard (September 2014 to August 2015).
This summary reflects staggering economic incompetence, a flagrant, politically motivated waste of tax payers money and even worse, the higher spending has not created a competent or ethical assessment framework, nor is it improving the lives of sick and disabled people.
The National Audit Office (NAO) found last year that the number of completed ESA assessments were below target, despite an expected doubling of the cost to the taxpayer of the contracts for disability benefit assessments, to £579m a year in 2016/17compared with 2014/15.
The NAO said that nearly 1 in 10 of the reports on disabled people claiming support were rejected as below standard by the government. This compares with around one in 25 before Atos left its contract.
The provider was not on track to complete the number of assessments expected last year and has also missed assessment report quality targets.
Atos abandoned its contract early following mounting evidence that hundreds of thousands of ill and disabled people have been wrongly judged to be fit for work and ineligible for government support.
The proportion of Capita PIP tests deemed unacceptable reached a peak of 56% in the three months to April 2015.
For Atos, the peak was 29.1% for one lot in June 2014.
More than 2.7million people have had a DWP decision regarding PIP since the benefit launched in 2013 – this suggests that tens of thousands went through an ‘unacceptable’ assessment.
The PCS union, which represents lower paid workers at the Department for Work and Pensions (DWP), told MPs during the Work and Pensions Committee inquiry: “We do not believe that there is any real quality control.
“Our belief is that delivering the assessments in-house is the only effective way for DWP to guarantee the level of quality that is required.”
In evidence submitted to the Work and Pensions Committee, Capita said 95% of assessments are now deemed acceptable – giving the figure for the past year. The company said:
“This represents a significant improvement from previous years and producing quality reports for the DWP remains a top priority within Capita.”
“Additionally, we use a range of intelligence as indicators, to identify disability assessors who may not be operating at the high quality output levels we expect.
“This includes data from audit activity, coaching and monitoring.
“This enables us to continually monitor performance, and take appropriate internal actions… where necessary to ensure we continue to deliver a quality service.”
Atos claim that 95.4% of tests are now acceptable and more work was needed to ensure the auditing process itself is “consistent”, adding: “We strive to deliver fair and accurate assessment reports 100% of the time.”
It also emerged that Atos and Capita employ just FOUR doctors between them. Most employees within the companies are nurses, paramedics, physiotherapists or occupational therapists. Capita’s chief medical officer Dr Ian Gargan confessed he was just one of two doctors at the firm’s PIP division, which has 1,500 staff.
He told the Commons Work and Pensions Committee: “Two thirds of our professionals have a nursing background and the remainder are from occupational therapy, physiotherapy and paramedicine.”
Dr Barrie McKillop, clinical director of Atos’ PIP division, admitted they too only had two doctors among their staff.
Frank Field said: “You’ve got two doctors each, mega workload – maybe there’s a lot of doctors out there who would long for some part-time work.”
“You haven’t sought them out to raise your game, have you?”
However Dr McKillop insisted Atos’ current model “is a strong one” and people “bring clinical experience in different areas”.
You can listen to this submission to Work and Pensions Committee’s PIP and ESA evidence sessionhere.
The witnesses are: Simon Freeman, Managing Director, Capita Personal Independence Payments, Dr Ian Gargan, Chief Medical Officer, Capita Personal Independence Payments, David Haley, Chief Executive, Atos Independent Assessment Services and Dr Barrie McKillop, Clinical Director, Atos Independent Assessment Services.
Many of us have been campaigning for reforms to the failing system – complaints about PIP rose by nearly 880 per cent last year – work and pensions inquiry report adds more pressure on the government to address a system that is failing so many people.
Since 2013 there have been 170,000 PIP appeals taken to the Tribunal: Claimants won in 108,000 cases – 63%. In the same time, there have been 53,000 ESA appeals. Claimants won in 32,000 – or 60% – of those cases.
Ministers have been citing statistics from a recent survey about satisfaction with Department for Work and Pensions services. However, I have critiqued the survey, and in particular, I faulted it because those claimants whose benefit had been disallowed by the Department were excluded from the survey. This means that the people most ikely to register their dissatisfaction with the Department in the survey were not allowed to participate.
I also found some statistics that are not fully or adequately discussed in the survey report – these were to be found tucked away in the Exceldata tableswhich were referenced at the end of the report – and certainly not cited by Government ministers, are those particularly concerning problems and difficulties with the Department for Work and Pensions that arose for some claimants.
It’s worrying that 51 per cent of all respondents across all types of benefits who experienced difficulties or problems in their dealings with the Department for Work and Pensions did not see them resolved. A further 4 per cent saw only a partial resolution, and 3 per cent didn’t know if there had been any resolution.
– means the sample size is less than 40.
In the Employment and Support Allowance (ESA) group, 50 per cent had unresolved problems with the Department, and in the Personal Independent Payment (PIP) group, 57 per cent of claimants had ongoing problems with the Department, while only 33 per cent have seen their problems resolved.
It is time that the Government stopped glossing over the fundamental problems with a system of assessment and decision making for disability benefits that is costing so much to administrate, it’s causing distress, hardship, and sometimes, it is costing people their lives. Fake statistics and PR designed surveys don’t hide the mounting evidence of the catastrophic impact that the Conservative reforms have had on many people.
The impact of the welfare reforms on disabled people has been brutal. More than a thirdof those who have had their benefit cut say they’re struggling to pay for food, rent and bills, while 40% say they’ve become more isolated as over 50,000 disabled people lost access to Motability vehicles.
To the government’s utter shame, they have claimed that this state of affairs is acceptable for the past 4 years. It never was, and it needs to change.
I don’t make any money from my work. I am disabled because of illness and have a very limited income. But you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.
“An official survey shows that 76% of people in the [PIP] system responded to say that they were satisfied. That itself is not a happy position, but it shows that her representation of people’s average experience as wholly negative on the basis of a Twitter appeal does not reflect the results of a scientific survey.” Stephen Kerr, (Conservative and Unionist MP for Stirling), Personal Independence Payments debate,Hansard, Volume 635, Column 342WH, 31 January 2018
“The latest official research shows that 76% of PIP claimants and 83% of ESA claimants are satisfied with their overall experience.”Spokespersonfor the Department for Work and Pensions.
The Department for Work and Pensions Claimant Service and Experience Survey (CSES)is described as “an ongoing cross-sectional study with quarterly bursts of interviewing. The survey is designed to monitor customers’ satisfaction with the service offered by DWP and enable customer views to be fed into operational and policy development.”
The survey measures levels of satisfaction in a defined group of ‘customers’ who have had contact with the Department for Work and Pensions within a three-month period prior to the survey.
One problem with the aim of the survey is that satisfaction is an elusive concept – a subjective experience that is not easily definable, accessible or open to precise quantitative measurement.
Furthermore, statistics that are not fully or adequately discussed in the survey report – these were to be found tucked away in the Excel data tables which were referenced at the end of the report –and certainly not cited by Government ministers, are those particularly concerning problems and difficulties with the Department for Work and Pensions that arose for some claimants.
It’s worrying that 51 per cent of all respondents across all types of benefits who experienced difficulties or problems in their dealings with the Department for Work and Pensions did not see them resolved. A further 4 per cent saw only a partial resolution, and 3 per cent didn’t know if there had been any resolution.
In the job seeker’s allowance (JSA) category, some 53 per cent had unresolved problems with the Department and only 39 per cent had seen their problems resolved. In the Employment and Support Allowance (ESA) group, 50 per cent had unresolved problems with the Department, and in the Personal Independent Payment (PIP) group, 57 per cent of claimants had ongoing problems with the Department, while only 33 per cent have seen their problems resolved.
– means the sample size is less than 40.
A brief philosophical analysis
The survey powerfully reminded me of Jeremy Bentham’s Hedonistic Calculus, whichwas an algorithm designed to measure pleasure and pain, as Bentham believed the moral rightness or wrongness of an action to be a function of the amount of pleasure or pain that it produced.
Bentham discussed at length some of the ways that moral investigations are a ‘science’. There is an inherent contradiction in Bentham’s work between his positivism, which is founded on the principle of verification – this says that a sentence is strictly meaningful only if it expresses something that can be confirmed or disconfirmed by empirical observation (establishing facts, which are descriptive) – and his utilitarianism, which concerns normative ethics (values, which are prescriptive). Bentham conflates the fact-value distinction when it suits his purpose, as do the current Government.
The recent rise in ‘happiness’, ‘wellbeing’ and ‘satisfaction’ surveys are linked with Bentham’s utilitarian ideas and a Conservative endorsement of entrenched social practices as a consequence of this broadly functionalist approach. It’s not only a reflection of the government’s simplistic, reductionist view of citizens, it’s also a reflection of the reduced functioning and increasing rational incoherence of a neoliberal state.
As we have witnessed over recent years, utilitarian ideologues in power tend to impose his/her vision of the ‘greatest happiness for the greatest number,’ which may entail some negative consequences for minorities and socially marginalised groups. For example, the design of a disciplinarian, coercive and punitive welfare systemto make ‘the taxpayer’ or ‘hard-working families’ happy (both groups being perceived as the majority). The happiness of those people who don’t currently conform to a politically defined norm doesn’t seem matter to the Government. Of course people claiming welfare support pay tax, and more often than not, paid tax before needing support.
Nonetheless, those in circumstances of poverty are regarded as acceptable collateral damage in the war for the totalising neoliberal terms and conditions of the ‘greater good’ of society, sacrificed for the greatest happiness of others. As a consequence, we live in a country where tax avoidance is considered more acceptable behaviour than being late for a job centre appointment. Tax avoidance and offshore banking is considered more ‘sustainable’ than welfare support for disabled people.
This utilitarian problem, arising because of a belief that a state’s imposed paradigm of competitive socioeconomic organisation is the way to bring about the greatest happiness of the greatest number, also causes the greatest misery for some social groups. This is a problem that raises issues with profound implications for democracy, socioeconomic inclusion, citizenship and human rights.
My point is that the very nature and subject choice of the research is a reflection of a distinctive political ideology, which is problematic, especially when the survey is passed off as ‘objective’ and value-neutral’.
There are certain underpinning and recognisable assumptions drawn from the doctrine of utilitarianism, which became a positivist pseudoscience in the late nineteenth century. The idea that human behaviour should be mathematised in order to turn the study of humans into a science proper strips humans down to the simplest, most basic motivational structures, in an attempt to reduce human behaviours to a formula.
To be predictable in this way, behaviour must also be assumed to be determined.
Yet we have a raft of behavioural economists complaining of everyone elses’ ‘cognitive bias’, who have decided to go about helping the population to make decisions in their own and society’s best interests. These best interests are defined by behavioural economists. The theory that people make faulty decisions somehow exempts the theorists from their own theory, of course. However, if decisions and behaviours are determined, so are the theories about decisions and behaviours. Behavioural science itself isn’t value-neutral, being founded on a collection of ideas called libertarian paternalism, which is itself a political doctrine.
The Government have embraced these ideas, which are based on controversial assumptions. Even the best philosophers and neuroscience specialists have never resolved the debate around determinism and free will. There is no consensus on the matter.
The current government formulates many policies with ‘behavioural science’ theory and experimental methodology behind them, which speaks in a distinct language of individual and social group ‘incentives’, ‘optimising decision-making’ and all for the greater ‘good of society’ (where poor citizens tend to get the cheap policy package of thrifty incentives, which entail austerity measures and having their income reduced, whereas wealthy citizens get the deluxe package, with generous financial rewards and free gifts.)
There are problems with trying to objectively measure a subjectively experienced phenomena. There are major contradictions in the ideas that underpin the motive to do so. There is also a problem with using satisfaction surveys as a measure of the success or efficacy of government policies and practices.
A little about the company commissioned to undertake the survey
The research was commissioned by the Department for Work and Pensions and conducted by Kantar Public UK– who undertake marketing research, social surveys, and also specialise in consultancy, public opinion data, policy and also economy polling, with, it seems, multi-tasking fingers in several other lucrative pies.
Kantar Public “Works with clients in government, the public sector, global institutions, NGOs and commercial businesses to advise in the delivery of public policy, public services and public communications.”
“Kantar Public will deliver global best practice through local, expert teams; will synthesise innovations in marketing science, data analytics with the best of classic social research approaches; and will build on a long history of methodological innovation to deliver public value. It includes consulting, research and analytical capabilities.” (A touch of PR and technocracy).
Eric Salama, Kantar CEO, commented on thelaunch of this branch of KantarPublicin 2016: “We are proud of the work that we do in this sector, which is growing fast. Its increasing importance in stimulating behavioural change in many aspects of societies requires the kind of expert resource and investment that Kantar Public will provide.”
The world seems to be filling up with self-appointed, utilitarian choice architects. Who needs to live in a democracy when we have so many people who say they’re not only looking out for our ‘best interests’, but defining them, and also, helping us all to make “optimum choices” (whatever they may be). All of these flourishing technocratic businesses are of course operating without a shred of cognitive bias or self-consciousness of their own. Apparently, the whopping profit motive isn’t a bias at all. It’s only everyone else that is cognitively flawed.
Based on those assumptions, what could possibly go wrong right?
I digress.
The nitty-gritty
Ok, so having set the table, I’m going to nibble at the served dish. Kantar’s survey – commissioned by the Government – cited in the opening quotes – by the Government. The quotes have been cited in the media, in a Commons debate and even presented as evidence in a Commons Committee inquiry into disability support (Personal Independence Payments and Employment and Support Allowance).
It seems that no-one has examined the validity and reliability of the survey cited, it has simply been taken at face value. It’s assumed that the methodology, interpretation and underlying motives are neutral, value-free and ‘objective’. In fact the survey has been described as ‘scientific’ by at least one Conservative MP.
There are a couple of problems, however, with that. My first point is a general one about quantitative surveys, especially those using closed questions. This survey was conducted mostly by telephone andmost questions in the used questionnairewere closed.
Some basic problems with using closed questions in a survey:
It imposes a limited framework of responses on respondents
The survey may not have the exact answer the respondent wants to give
The questions lead and limit the scope of responses
Respondents may select answers which are simply the most similar to their “true” response – the one they want to give but can’t because it isn’t in the response options – even though it is different
The options presented may confuse the respondent
Respondents with no opinion may answer anyway
Does not provide us with information about whether or not the respondent actually understood the question being asked, or if the survey response options provided include an accurate capture and reflection of the respondents’ views.
Another problem which is not restricted to the use of surveys in research is the Hawthorne effect. The respondents in this survey had active, open benefit claims or had registered a claim. This may have had some effect on their responses, since they may have felt scrutinised by the Department for Work and Pensions. Social relationships between the observer and the observed ought to be assessed when performing any type of social analysis and especially when there may be a perceived imbalanced power relationship between an organisation and the respondents in any research that they conduct or commission.
Given the punitive nature of welfare policies, it is very difficult to determine the extent to which fear of reprisal may have influenced peoples’ responses, regardless of how many reassurances participants were given regarding anonymity in advance.
The respondents in a survey may not be aware that their responses are to some extent influenced because of their relationship with the researcher (or those commissioning the research); they may subconsciously change their behaviour to fit the expected results of the survey, partly because of the context in which the research is being conducted.
The Hawthorne Effect is a well-documented phenomenon that affects many areas of research and experiment in social sciences. It is the process where human subjects taking part in research change or modify their behaviour, simply because they are being studied. This is one of the hardest inbuilt biasesto eliminate or factor into research design. This was a survey conducted over the telephone, which again introduces the risk of an element of ‘observer bias.’
Methodological issues
On a personal level, I don’t believe declared objectivity in research means that positivism and quantitative research methodology has an exclusive stranglehold on ‘truth’. I don’t believe there is a universally objective, external vantage point that we can reach from within the confines of our own human subjectivity, nor can we escape an intersubjectively experienced social, cultural, political and economic context.
There is debate around verificationism, not least because the verification principle itself is unverifiable. The positivist approach more generally treats human subjects as objects of interest and research – much like phenomena studied in the natural sciences. As such, it has an inbuilt tendency to dehumanise the people being researched. Much human meaning and experience gets lost in the translation of responses into quantified data – the chief goal of statistical analysis is to identify trends.
An example of the employment of ‘objective’ and ‘value-neutral’ methods resulting in dehumanisation is some of the inappropriate questions asked during assessment for disability benefits. The Work and Pensions Select Committee received nearly 4,000 submissions – the most received by a select committee inquiry – after calling for evidence on the assessments for personal independence payment (PIP) and Employment and Support Allowance (ESA).
The recent committee report highlighted people with Down’s syndrome being asked when they ‘caught’ it. Assessors have asked insulting and irrelevant questions, such as when someone with a progressive condition will recover, and what level of education they have.
This said, my own degree and Master’s, undertaken in the 1990s, and my profession up until 2010, when I became too ill to work, were actually used as an indication that I have “no cognitive problems” in 2017, after some 7 years of being unable to work because of the symptoms of a progressive illness that is known to cause cognitive problems. My driving licence in 2003 was also used as evidence of my cognitive functioning.
Yet I explained that have been unable to drive since 2004 because of my sensitivity to flickering (lamp posts, trees, telegraph poles have a strobe light effect on me as the car moves) which triggers vertigo, nausea, severe coordination difficulties, scintillating scotoma and subsequent loss of vision, slurred and incoherent speech, severe drowsiness, muscle rigidity and uncontrollable jerking in my legs. I usually get an incapacitating headache, too. I’m sensitive to flashing or flickering lights, certain patterns such as ripples on a pond, some black and white stripe patterns and even walking past railings on an overcast day completely incapacitates me.
The PIP assessment framework is claimed to be ‘independent, unbiased’ and objective.’ Central to the process is the use of ‘descriptors’, which are a limited set of criteria used to ‘measure’ the impact of the day-to-day level of disability that a person experiences. Assessors useobjective methods such as “examination techniques, collecting robust evidence, selecting the correct descriptor as to the claimant’s level of ability in each of the 10 activities of daily living and two mobility activities, and report writing.” They speak the language of positivism with fluency.
However, it has been long recognised by social researchers and sociologists that positivism does not accommodate human complexity, vulnerability and context very well. In an assessment situation, the assessor is a stranger to the person undergoing the assessment. How appropriate is it that a stranger assessing ‘functional capacity’ asks disabled people why they have not killed themselves? Alice Kirby is one of many people this happened to.
She says: “In this setting it’s not safe to ask questions like these because assessors have neither the time or skills to support us, and there’s no consideration of the impact it could have on our mental health.
“The questions were also completely unnecessary, they were barely mentioned in my report and had no impact on my award.”
So, not only an extremely insensitive and potentially risk-laden question but an apparently pointless one.
It may be argued that some universal ‘truths’ such as the importance of ‘impartiality’, or ‘objectivity’ are little more than misleading myths which allow practitioners and researchers alike to claim, and convince themselves, that they behave in a manner that is morally robust and ethically defensible.
A brief discussion of the methodological debate
Social phenomena cannot always be studied in the same way as natural phenomena, because human beings are subjective, intentional and have a degree of free will. One problem with quantitative research is that it tends to impose theoretical frameworks on those being studied, and it limits responses from those participating in the study. Quantitative surveys tend not to capture or generate understanding about the lived, meaningful experiences of real people in context.
There are also distinctions to be made between facts, values and meanings. Qualitative researchers are concerned with generating explanations and extending understanding rather than simply describing and measuring social phenomena and attempting to establish basic cause and effect relationships.
Qualitative research tends to be exploratory, potentially illuminating underlying intentions, responses, beliefs, reasons, opinions, and motivations to human behaviours. This type of analysis often provides insights into social problems, helps to develop ideas and establish explanations, and may also be used to formulate hypotheses for further quantitative research.
The dichotomy between quantitative and qualitative methodological approaches, theoretical structuralism (macro-level perspectives) and interpretivism (micro-level perspectives) in sociology, for example, is not nearly so clear as it once was, however, with many social researchers recognising the value of both means of data and evidence collection and employingmethodological triangulation, reflecting a commitment to methodological and epistemological pluralism.
Qualitative methods of research tend to be much more inclusive, detailed and expansive than quantitative analysis, lending participants a dialogic, democratic and first hand voice regarding their own experiences.
The current government has tended to dismiss qualitative evidence from first hand witnesses of the negative impacts of their policies – presented cases studies, individual accounts and ethnographies – as ‘anecdotal.’ This presents a problem in that it stifles legitimate feedback. An emphasis on positivism reflects a very authoritarian approach to social administration and it needs to be challenged.
A qualitative approach to research is open and democratic. It potentially provides insight, depth and richly detailed accounts. The evidence collected is much more coherent and comprehensive, because it explores beneath surface appearances, and reaches above causal relationships, delving much deeper than the simplistic analysis of ranks, categories and counts. It provides a reliable and rather more authentic record of experiences, attitudes, feelings and behaviours, it prompts an openness and is expansive, whereas quantitative methods tend to limit and are somewhat reductive.
Qualitative research methods encourage people to expand on their responses and may then open up new issues and topic areas not initially considered by researchers.
Government ministers like to hear facts, figures and statistics all the time. What we need to bring to the equation is a real, live human perspective. We need to let ministers know how the policies they are implementing directly impact on their own constituents and social groups more widely.
Another advantage of qualitative methods is that they are prefigurative and bypass problems regarding potential power imbalances between the researcher and the subjects of research, by permitting participation (as opposed to respondents being acted upon) and creating space for genuine dialogue and reasoned discussions to take place. Research regarding political issues and policy impacts must surely engage citizens on a democratic, equal basis and permit participation in decision-making, to ensure an appropriate balance of power between citizens and the state.
Quantitative research draws on surveys and experimental research designs which limit the interaction between the investigator and those being investigated. Systematic sampling techniques are used, in order to control the risk of bias. However not everyone agrees that this method is an adequate safeguard against bias.
Kantar say in their published survey report: “As the Personal Independence Payment has become more established and its customer base increased, there has been an increase in overall satisfaction from 68 per cent in 2014/15 to 76 per cent in 2015/16. This increase is driven by an increase in the proportion of customers reporting that they were ‘very satisfied’ which rose from 25 per cent in 2014/15 to 35 per cent in 2015/16.
Sampling practices
The report states clearly: “The proportion of Personal Independence Payment customers who were ‘very dissatisfied’ fell from 19 per cent to 12 per cent over the same period.
Then comes the killer: “This is likely to be partly explained by the inclusion in the 2014/15 sample of PIP customers who had a new claim disallowed who have not been sampled for the study since 2015/16. This brings PIP sampling into line with sampling practises for other benefits in the survey.
In other words, those people with the greatest reason to be very dissatisfied with their contact with the Department for Work and Pensions – those who haven’t been awarded PIP, for example – are not included in the survey.
This introduces a problem in the survey called sampling bias. Sampling bias undermines theexternal validityof a survey (the capacity for its results to be accurately generalised to the entire population, in this case, of those claiming PIP). Given that people who are not awarded PIP make up a significant proportion of the PIP customer population who have registered for a claim, this will skew the survey result, slanting it towards positive responses.
Award ratesfor PIP (under normal rules, excluding withdrawn claims) for new claims are 46 per cent. However, they are at 73 per cent for Disability Living Allowance (DLA) reassessment claims. This covers PIP awards made between April 2013 and October 2016. Nearly all special rules (for those people who are terminally ill) claimants are found eligible for PIP.
If an entire segment of the PIP claimant population are excluded from the sample, then there are no adjustments that can produce estimates that are representative of the entire population of PIP claimants.
The same is true of the other groups of claimants. If those who have had a new claim disallowed (and again, bearing in mind that only 46 per cent of those new claims for PIP resulted in an award), then that excludes a considerable proportion of claimants registering across all types of benefits who were likely to have registered a lower level of satisfaction with the Department because their claim was disallowed. This means the survey cannot be used to accurately track the overall performance of the Department or monitor in terms of whether it is fulfilling its customer charter commitments.
The report clearly states: “There was a revision to sample eligibility criteria in 2014/15. Prior to this date the survey included customers who had contacted DWP within the past 6 months. From 2014/15 onwards this was shortened to a 3 month window. This may also have impacted on trend data.”
We have no way of knowing why those peoples’ claim was disallowed. We have no way of knowing if this is due to error or poor administrative procedures within the Department. If the purpose of a survey like this is to produce a valid account of levels of ‘customer satisfaction’ with the Department, then it must include a representative sample of all of those ‘customers’, and include those whose experiences have been negative.
Otherwise the survey is reduced to little more than a PR exercise for the Department.
The sampling procedure is therefore a way of only permitting an unrepresentative sample of people to participate in a survey, who are likeliest to produce the most positive responses, because their experiences have been of a largely positive outcome within the survey time frame. If those who have been sanctioned are also excluded across the sample, then this will also hide the experiences and comments of those most adversely affected by the Department’s policies and administration procedures, again these are claimants who are the likeliest to register their dissatisfaction in the survey.
Measurement error occurs when a survey respondent’s answer to a survey question is inaccurate, imprecise, or cannot be compared in any useful way to other respondents’ answers. This type of error results from poor question wording and questionnaire construction. Closed and directed questions may also contribute to measurement error, along with faulty assumptions and imperfect scales. The kind of questions asked may also have limited the scope of the research.
For example, there’s a fundamental difference in asking questions like “Was the advisor polite on the telephone?” and “Did the decision-maker make the correct decision about your claim?”. The former generates responses that are relatively simplistic and superficial, the latter is rather more informative and tells us much more about how well the DWP fulfils one of its key functions, rather than demonstrating only how politely staff go about discussing claim details with claimants.
This survey is not going to produce a valid range of accounts or permit a reliable generalisation regarding the wider populations’ experiences with the Department for Work and Pensions. Nor can it provide a template for a genuine learning opportunity and commitment to improvement for the Department.
With regard to the department’s Customer Charter, this survey does not include valid feedback and information regarding this section in particular:
Getting it right
We will: • Provide you with the correct decision, information or payment • Explain things clearly if the outcome is not what you’d hoped for • Say sorry and put it right if we make a mistake • Use your feedback to improve how we do things
One other issue with the sampling is that the Employment and Support Allowance (ESA) and Job Seeker’s Allowance (JSA) groups were overrepresented in the cohort.
Kantar do say: “When reading the report, bear in mind the fact that customers’ satisfaction levels are likely to be impacted by the nature of the benefit they are claiming. As such, it is more informative to look at trends over time for each benefit rather than making in-year comparisons between benefits.”
The sample was intentionally designed to overrepresent these groups in order to allow “robust quarterly analysis of these benefits”, according to the report. However, because a proportion of the cohort – those having their benefit disallowed – were excluded in the latest survey and not the previous one, so cross comparison and establishing trends over time is problematic.
To reiterate, the report also says: “When reading the report, bear in mind the fact that customers’ satisfaction levels are likely to be impacted by the nature of the benefit they are claiming. As such, it is more informative to look at trends over time for each benefit rather than making in-year comparisons between benefits.”
With regard to my previous point: “Please also note that there was a methodological change to the way that Attendance Allowance, Disability Living Allowance and Personal Independence Payment customers were sampled in 2015/16 which means that for these benefits results for 2015/16 are not directly comparable with previous years.”
And: “As well as collecting satisfaction at an overall level, the survey also collects data on customers’ satisfaction with specific transactions such as ‘making a claim’, ‘reporting a change in circumstances’ and ‘appealing a decision’ (along with a number of other transactions) covering the remaining aspects of the DWP Customer Charter.These are not covered in this report, but the data are presented in the accompanying data tabulations.”
The survey also covered only those who had been in touch with DWP over a three month period shortly prior to the start of fieldwork. As such it is a survey of contacting customers rather than all benefits customers.
Again it is problematic to make inferences and generalisations about the levels of satisfaction among the wider population of claimants, based on a sample selected by using such a narrow range of characteristics.
The report also says: “Parts of the interview focus on a specific transaction which respondents had engaged in (for example making a claim or reporting a change in circumstances). In cases where a respondent had been involved in more than one transaction, the questionnaire prioritised less common or more complex transactions. As such, transaction-specific measures are not representative of ALL transactions conducted by DWP”.
And regarding subgroups: “When looking at data for specific benefits, the base sizes for benefits such as Employment and Support Allowance and Jobseeker’s Allowance (circa 5,500) are much larger than those for benefits such as Carer’s Allowance and Attendance Allowance (circa 450). As such, the margins of error for Employment and Support Allowance and Jobseeker’s Allowance are smaller than those of other benefits and it is therefore possible to identify relatively small changes as being statistically significant.”
Results from surveys are estimates and there is a margin of error associated with each figure quoted in this report. The smaller the sample size, the greater the uncertainty.
In fairness, the report does state: “In the interest of avoiding misinterpretation, data with a base size of less than 100 are omitted from the charts in this report.”
On non-sampling error, the report says: “Surveys depend on the responses given by participants. Some participants may answer questions inaccurately and some groups of respondents may be more likely to refuse to take part altogether. This can introduce biases and errors. Nonsampling error is minimised by the application of rigorous questionnaire design, the use of skilled and experienced interviewers who work under close supervision and rigorous quality assurance of the data.
Differing response rates amongst key sub-groups are addressed through weighting. Nevertheless, it is not possible to eliminate non-sampling error altogether and its impact cannot be reliably quantified.”
As I have pointed out, sampling error in a statistical analysis may also arise from the unrepresentativeness of the sample taken.
The survey response rates were not discussed either. In the methodological report, it says: “In 2015/16 DWP set targets each quarter for the required number of interviews for each benefit group to either produce a representative proportion of the benefit group in the eventual survey or a higher number of interviews for sub-group analysis where required. It is therefore not strictly appropriate to report response rates as fieldwork for a benefit group ceased if a target was reached.”
The Government says: “This research monitors claimants’ satisfaction with DWP services and ensures their views are considered in operational and policy planning.”
Again, it doesn’t include those claimants whose benefit support has been disallowed. There is considerable controversy around disability benefit award decisions (and sanctioning) in particular, yet the survey does not address this important issue, since those experiencing negative outcomes are excluded from the survey sample. We know that there is a problem with the PIP and ESA benefits award decision-making processes, since a significant proportion of those people who go on to appeal DWP decisions are subsequently awarded their benefit.
The DWP, however, don’t seem to have any interest in genuine feedback from this group that may contribute to an improvement in both performance and decision-making processes, leading to improved outcomes for disabled people.
Last year, judges ruled 14,077 people should be given PIP against the government’s decision not to between April and June – 65 per cent of all cases. The figure is higher still when it comes to ESA (68 per cent). Some 85 per cent of all benefit appeals were accounted for by PIP and ESA claimants.
The system, also criticised by the United Nations because it “systematically violates the rights of disabled persons”, seems to have been deliberately set up in a way that tends towards disallowing support awards. The survey excluded the voices of those people affected by this government’s absolute callousness or simple bureaucratic incompetence. The net effect, consequent distress and hardship caused to sick and disabled people is the same regardless of which it is.
Given that only 18 per cent of PIP decisions to disallow a claim are reversed at mandatory reconsideration, I’m inclined to think that this isn’t just a case of bureaucratic incompetence, since the opportunity for the DWP to rectify mistakes doesn’t result in subsequent correct decisions, in the majority of cases, for those refused an award.
Without an urgent overhaul of the assessment process by the Government, the benefit system will continue to work against disabled people, instead of for them.
The Government claim: “The objectives of this research are to:
capture the views and experiences of DWP’s service from claimants, or their representatives, who used their services recently
identify differences in the views and experiences of people claiming different benefits
use claimants’ views of the service to measure the department’s performance against itscustomer charter“
The commissioned survey does not genuinely meet those objectives.
“There is an alternative reality being presented by the other side. The use of figures diminishes disabled peoples’ experiences.”
I don’t make any money from my work. I am disabled because of illness and have a very limited income. But you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.
New figures released by the Government indicate that neither Atos nor Capita – the private companies contracted by the government –paid more than £500mto assess people for Personal Independence Payments (PIP) – are actually meeting the target of 97% of assessments conforming to standards.
The government have released the datato the Commons Work and Pensions Committee, which was due to take evidence from Atos and Capita regarding the assessments yesterday.
While private companies carry out the assessments, it is the Department for Work and Pensions (DWP) that makes the final decision on whether to award people financial support. However, those decisions are informed by the contents of reports that privately contracted ‘health professionals’ write during the assessment process.
Latest audits show that 6.4% of PIP assessments were deemed “unacceptable” in the three months leading up to October 2017.
Furthermore, the two companies have never met the target once, by the standard set using the government’s current method of quality control and measuring performance for PIP assessments.
Audits of the 4,200 PIP assessments take place every three months and are split between three ‘lots’ that are managed by different companies.
Lot 1 is assigned to Atos trading as ‘Independent Assessment Services’ (IAS). The Department for Work and Pensions (DWP) said 6.2% of its assessments were “unacceptable” in the three months to October 2017.
Lot 3 is also assigned to IAS. The DWP said 5.7% of the assessments were “unacceptable” in the three months to October 2017.
Lot 2 is assigned to Capita. The DWP said 7.3% of its assessments were “unacceptable” in the three months to October 2017.
The government’s own figures on the rate of ‘unacceptable’ PIP tests. (Image: Department for Work and Pensions)
The current performance measure – which sees an independent team pick cases at random – was launched in March 2016. Under the previous method, the private providers audited assessments themselves.
The National Audit Office (NAO) found last year that the number of completed ESA assessments were below target, despite an expected doubling of the cost to the taxpayer of the contracts for disability benefit assessments, to £579m a year in 2016/17compared with 2014/15.
The NAO said that nearly 1 in 10 of the reports on disabled people claiming support were rejected as below standard by the government. This compares with around one in 25 before Atos left its contract.
The provider was not on track to complete the number of assessments expected last year and has also missed assessment report quality targets.
Atos abandoned its contract early following mounting evidence that hundreds of thousands of ill and disabled people have been wrongly judged to be fit for work and ineligible for government support.
The proportion of Capita PIP tests deemed unacceptable reached a peak of 56% in the three months to April 2015.
For Atos, the peak was 29.1% for one lot in June 2014.
More than 2.7million people have had a DWP decision regarding PIP since the benefit launched in 2013 – this suggests that tens of thousands went through an ‘unacceptable’ assessment.
The PCS union, which represents lower paid workers at the Department for Work and Pensions (DWP), told MPs during the Work and Pensions Committee inquiry: “We do not believe that there is any real quality control.
“Our belief is that delivering the assessments in-house is the only effective way for DWP to guarantee the level of quality that is required.”
In evidence submitted to the Work and Pensions Committee, Capita said 95% of assessments are now deemed acceptable – giving the figure for the past year. The company said:
“This represents a significant improvement from previous years and producing quality reports for the DWP remains a top priority within Capita.”
“Additionally, we use a range of intelligence as indicators, to identify disability assessors who may not be operating at the high quality output levels we expect.
“This includes data from audit activity, coaching and monitoring.
“This enables us to continually monitor performance, and take appropriate internal actions… where necessary to ensure we continue to deliver a quality service.”
Atos said 95.4% of tests are now acceptable and more work was needed to ensure the auditing process itself is “consistent”, adding: “We strive to deliver fair and accurate assessment reports 100% of the time.”
It also emerged that Atos and Capita employ just FOUR doctors between them. Most employees within the companies are nurses, paramedics, physiotherapists or occupational therapists. Capita’s chief medical officer Dr Ian Gargan confessed he was just one of two doctors at the firm’s PIP division, which has 1,500 staff.
He told the Commons Work and Pensions Committee: “Two thirds of our professionals have a nursing background and the remainder are from occupational therapy, physiotherapy and paramedicine.”
Dr Barrie McKillop, clinical director of Atos’ PIP division, admitted they too only had two doctors among their staff.
Frank Field said: “You’ve got two doctors each, mega workload – maybe there’s a lot of doctors out there who would long for some part-time work.”
“You haven’t sought them out to raise your game, have you?”
However Dr McKillop insisted Atos’ current model “is a strong one” and people “bring clinical experience in different areas”.
You can listen to yesterday’s Work and Pensions Committee’s PIP and ESA evidence session here.
The witnesses are: Simon Freeman, Managing Director, Capita Personal Independence Payments, Dr Ian Gargan, Chief Medical Officer, Capita Personal Independence Payments, David Haley, Chief Executive, Atos Independent Assessment Services and Dr Barrie McKillop, Clinical Director, Atos Independent Assessment Services.
You can access the written evidence and watch the session online from the previous sessionherefrom 22 November.
The inquiry is ongoing. The Committee is interested in receiving recommendations for change both on the assessment process for each benefit individually, and on common lessons that can be learned from the two processes.
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Philip Hammond has been roundly criticised following comments he made to the Treasury Select Committee, suggesting that falling productivity rates in the UK workforce was due to more disabled people being in work.
Giving evidence to the Commons Treasury Select Committee concerning the Budget, the Chancellor said: “It is almost certainly the case that by increasing participation in the workforce, including far higher levels of participation by marginal groups and very high levels of engagement in the workforce, for example of disabled people – something we should be extremely proud of – may have had an impact on overall productivity measurements.”
He added :“It may have collateral impact on measured productivity performance.”
These comments betray a political mindset that is underpinned by the idea that disabled people are somehow a ‘burden’ on the economy, either in work or out of it. Conservative ministers such as David Freud and Philip Davies among others have suggested that disabled people should work for less than the minimum wage, implying that their labour is somehow worth less than that of others.
Labour MP John Mann, a Committee member, said the Chancellor’s comments were “appalling” and later tweeted: “Chancellor just linked low productivity growth to the labour market and specified the increased employment of disabled people.
“My experience of employing disabled people is that they are brilliant employees. The chancellor’s comments are ignorant.”
Marsha de Cordova, Labour’s shadow minister for disabilities, said: “Shocking that Philip Hammond is trying to blame disabled people for low productivity!
“Disabled people contribute enormously and disability employment gap has barely changed since productivity started to stall. Disgusting scapegoating!”
Labour’s Shadow Work and Pensions Secretary, Debbie Abrahams MP, said Hammond’s comments were “disgraceful” and called on the Chancellor to apologise:
“It is disgraceful that Philip Hammond is scapegoating disabled people for a productivity crisis created by the Conservatives’ failed economic policies”, she said.
“This is coming from a Government that has forced disabled people to pay the price of their failed austerity agenda, including by cutting measures that help disabled people into the workforce and scrapping their own manifesto commitment on halving the disability employment gap.
“We should be increasing disabled people’s access to employment, not denigrating their contributions.
“The Chancellor should apologise immediately.”
Anna Bird, director of policy and research at disability charity Scope, said: “These comments are totally unacceptable and derogatory.
“They fundamentally undermine the Government’s policy to get more disabled people into work, and the ambition set out by the Prime Minister just a week ago.
“The Chancellor must urgently withdraw them and offer a full apology.”
In their recent response to The Future of Work, Health and Disabilityconsultation, which ran last year, the Government say that they will increase the numbers of disabled people in employment by a million by 2027. The Conservatives claim that they want to ensure disabled people ‘fulfil their potential.’ They claim that work is a ‘health outcome’ and employment is linked with better health in order to justify the raft of policies that has left many disabled people without adequate lifeline support for the past few years.
Hammond’s comments make a mockery of the whole rationale behind the government’s approach to disabled people’s welfare and justification of the severe cuts in their lifeline support. Many disabled people have been forced by the state to work because they suddenly found themselves no longer eligible for financial support. This is because of the re-written state assessment processes, which are specifically designed to cut costs. This has caused distress and harm to many disabled and ill people, at a time when they are very vulnerable.
For example, last year I wrote aharrowing article about a man with a serious lung condition, hernia and he also developed depression and anxiety, who was passed as ‘fit for work’ by ‘independent’ and state-contracted ‘healthcare professionals’. His doctor was told by a manager at Birkenhead job centre to stop issuing ‘fit notes’ (another Orwellian language shift by the government, to describe sick notes). The letter said:
‘We have decided your patient is capable of work from and including January 10, 2016.
This means you do not have to give your patient more medical certificates for employment and support allowance purposes unless they appeal against this decision.’
The doctor obliged and the patient died. He clearly wasn’t ‘fit for work.’
James Harrison was very worried that his ill-health interfered with his obligation to comply with the inflexible and harsh conditions attached to his eligibility for basic welfare support and that this would lead to sanctions – the withdrawal of his lifeline support and only income, which was calculated to meet his most basic survival needs only. What an absolutely appalling situation for the state to put someone in when they are so ill.
It’s difficult to understand why a so-called civilised, developed and very wealthy nation would place some citizens’ lives at risk in this way. James isn’t an isolated case. There are many more people that have been distressed and harmed by the consequences of the Conservative’s disciplinarian approach to ‘welfare’ policies.
The Government has already faced a damning United Nations inquiry into their systematic failure to observe and uphold the basic human rights of disabled people.
The correlation claimed by the Government regarding health and work most likely arises because of a faulty inferential leap of convenience on their part. Again, this claim has been used to justify cuts to support for disabled people. The correlation arises because people aren’t in employment when they are simply too ill to work.
This said, being out of work has become very bad for people’s health, because welfare has been reduced to the point where it cannot adequately cover the costs of people’s most fundamental and basic survival needs any more. It was originally designed to cover only essentials. It stands to reason that if it has been reduced, people won’t be able to afford necessities any more. Many people in work are also facing severe difficulties in meeting their basic physical needs, because of the drop in real wages over recent years and increasing employment insecurity, coupled with rising living costs. Living standards have plummeted which will invariably impact on peoples’ health, in work or out. Work is failing to provide sufficient income, and that is getting worse. There is a well-established correlation between mental and physical wellbeing, and financial hardship.
The Conservatives also claim that people taking long term sick leave has a detrimental impact on the economy and productivity, costing UK employers and the Treasury millions.
It seems the Government is struggling to produce a coherent and consistent rationale for their increasingly draconian policies aimed at pushing disabled people into work and more generally, in getting their ‘facts’ straight.
It’s about time conservative ministers stopped their expedient scapegoating of ill and disabled people.
I don’t make any money from my work. I am disabled because of illness and have a very limited income. But you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.
I co-run a support group for people going through Employment and Support Allowance (ESA) and Personal Independent Payment assessments and appeals. I have heard many people’s harrowing experiences of these assessments, I have written about them, and I’ve written critically about the assessment process itself. However, it isn’t until you experience one of these assessments for yourself that you may fully appreciate just how utterly distressing, surreal, degrading and dehumanising the process actually is. Or how potentially harmful.
I had my first ever Personal Independence Payment (PIP) assessment today. I have systemic lupus and pulmonary fibrosis, among other problems, all of which affect my mobility and capacity to live independently, day-to-day. My consultant is a rheumatologist and more recently, I have been seeing a pulmonary consultant. Other specialists I sometimes need to see are a neurologists, opthalmologists, physiotherapists and haematologists.
After a bout of pneumonia and sepsis earlier this year, which almost cost me my life, a follow-up scan found further lung problems, which have probably been ongoing for some time. Fibrosis can happen as a result of connective tissue illnesses like lupus, scleroderma or rheumatoid arthritis. It can also happen to people whose conditions have been treated with a chemotherapy called methotrexate – which I was given from 2012 onwards. My mother, who had rheumatoid arthritis, died suddenly of pulmonary fibrosis in 2009. The coroner said it was a complication of her illness, not because of a treatment. She was never given methotrexate.
The interview part of the assessment seemed okay, initially. I provided further evidence regarding my recent assessment, undertaken by my local council’s Occupational Therapy Service, which led to the prescription of aids and appliances in my home. The assessment report was quite clear about my basic medical conditions and day-to-day mobility limitations. I was asked about medication. I explained that following my second appointment with my new rheumatologist, I was prescribed some new medications, including one for secondary Raynaud’s syndrome, which has arisen because of my having lupus, as a complication.
A recent thermal imaging and microvascular study shows that this condition has got worse over time, and so my rheumatologist prescribed a treatment called Amlodipine. It concerned me that the Health Care Professional looked confused and skeptical when she asked for a list of my medication, and she said that this is a treatment for high blood pressure, she seemed to disbelieve what I had told her. I explained that I don’t have high blood pressure, and that calcium channel blockers such as Amlodipine are used for more than one condition, such as certain types of angina – which I also don’t have – and secondary Raynaud’s syndrome, which I do have.
I was asked about the impact of my illnesses on my day-to-day living. At one point I explained that I find preparing and chopping food difficult because of the tendonitis in both wrists. I have been diagnosed with De Quervian’s Tenosynovitis, which makes putting any weight or strain on my wrists very painful.
I was also concerned that I was then asked if I have had my wrists splinted. This shows a lack of understanding about my condition. I have had splints but it did not make any difference to my wrists. I was diagnosed with De Quervain’s syndrome by my rheumatologist and a physiotherapist in 2011, but had the problem for considerably longer. As my physiotherapist pointed out, my wrists are not injured or strained through overuse and so won’t get better with rest or splinting. This is because they are damaged by a chronic systemic inflammatory disease process that is ongoing, and he told me it is medication rather splinting that is needed to try to manage the level of inflammation in my body as a whole.
Splinting my wrists is akin to putting a plaster cast on a knee affected by rheumatoid arthritis, or a plaster on cancer. It won’t help at all. That the HCP didn’t seem to understand the difference between the chronic inflammatory symptoms of connective tissue disease and curable strain and injury related conditions bothered me.
Another thing that bothered me is that I was asked about the frequency of my periods of severe illness and how that impacts on my ability to manage things like personal care. She wanted an actual number of days, which of course is impossible to give with any precision when you have a fluctuating condition. Sometimes I struggle getting dressed and spend days on end in my pyjamas, and the HCP asked me “how often”? I tried to give an average number of days per month, but because the acute flares of my illness vary so much from month to month, week to week, that was very difficult to do. She also seemed impatient that I struggled to try and work out an average. I have cognitive problems as a result of my illness.
Another problem is that I struggle with washing my hair sometimes, and she demanded to know how often I need assistance with that task. The best I could do was to explain that when I have no help, I can go up to two weeks at a time with matted, unwashed hair. I felt embarrased and ashamed enough in having to discuss these personal difficulties with someone I have never met, but it was made to feel somehow like a confict, that part of the discussion. I felt that if I didn’t provide precise and quantified “evidence”, the qualitative details – my experience of my disability – would not be taken seriously by the HCP.
Another problem with the assessments that worries me is that there was nowhere near enough time to discuss the complex impact of all my complex medical conditions and wide-ranging symptoms on my day-to-day life.
The ‘examination’
After discussion of my conditions and how my illnesses impact on upon my day-to-day living, I was asked to do some tasks during an examination, which have left me in a huge amount of pain. I also felt stripped of dignity, because I struggled to manage the exercises and felt very anxious and distressed. I was shocked at some of the tasks I was asked to do, and also shocked at the fact I couldn’t actually undertake a number of these tasks. My shock turned to anger later, as I had to leave in significantly more pain that I had arrived with at the start of the appointment. I was also asked to do each of the unfamiliar tasks and exercises in quick succession, which made assessing any likely pain and potential damage difficult before trying to do them.
It is also a traumatic experience to suddenly discover that your illness has insidiously robbed you of a degree of mobility that you previously assumed you had. That is always a shock.
Last year, my GP was carrying out a standard examination and smear, when my hips locked painfully, as I tried to move my legs. She couldn’t completeher examination and the procedure as my egs would not move. After this, she told me to not get up for a while, and she described the experience – discovering that my mobility had been painfully restricted by my illness – as “traumatic.” It was.
I have, among other problems, very painful inflammatory arthritis and tendonitis in my knees, hips, spine, Achilles’ tendons and ankles. Because the inflammation and damage is bilateral and symmetrical – affecting both knees, both hips, both ankles and both Achilles’ tendons equally, and across my lower spine – it leaves me unable to compensate for pain, stiffness and weakness by shifting my weight and balance onto another limb, as that is also weak, stiff and painful. It leaves me unsteady. I often use a stick to stop me falling over, but as an aid for walking, it’s pretty useless generally, because my shoulders, elbows and wrists also won’t take any of my weight.
The inflammation process causes marked stiffness as well as severe pain, and so restricts my mobility. I was asked to “squat down” at the start of the examination. I refused, and told the assessor that I couldn’t do that. It would have certainly caused me severe pain and possibly an injury. As I can’t support weight on my shoulders and wrists – I also have osteoporosis in my wrists and hands – had I tried and fallen backwards, I may have easily ended up with a fractured bone. I was horrified at being asked to do that. I struggled to equate the “health care professional” with what I had been asked to do, and felt confused and shocked that she had asked me to do something that may have been harmful.
I also felt that the HCP may have misconstrued my comments that I couldn’t undertake this task as an unwillingness to cooperate, as she looked unhappy about it. She did ask why, and I explained. I felt that trying some of the other tasks she set, which looked to be less dangerous, would at least demonstrate that I wasn’t being uncooperative, and most looked like they wouldn’t inflict any damage at first glance, when she demonstrated them.
However, other exercises I tried to do resulted in my neck locking and severe pain when I was told to turn my head to look over my shoulder – and couldn’t. I have neck problems through longstanding inflammation there and an upper spine injury involving a displaced vertebrae, which is sometimes very painful. In addition, the problems in my shoulders also contributed significantly to the level of pain when I turned my neck, and my neck clicked painfully at the base of my skull.
I was asked to put my hands and wrists in positions that looked impossible to me. I tried, though. I was asked to line the backs of my wrists up with my hands flat, which I couldn’t do, and it hurt me a lot to try this.
This is called Phalen’s Manoeuvre. I was asked to do what is actually a provocative diagnostic test for carpal tunnel syndrome – which entails compression of the median nerve. The test provokes the symptoms of carpal tunnel problems, in the same way that the painful Finkelstein test provokes symptoms of severe pain in people with De Quervain’s. I have never been diagnosed with carpal tunnel problems, but I do have more than one diagnosis of bilateral De Quervian’s Tenosynovitis, as stated previously.
I tried to do this manoeuvre, even though it isn’t applicable to my condition (though I didn’t know that at the time, I have since researched the test, as I wanted to know why I couldn’t perform it). I couldn’t even get close to managing it, it hurt my shoulders a lot when I tried to align my elbows at right angles with my dropped finger tips, and I couldn’t drop my wrists fully due to an incredible pain and stiffness that I had not expected. The backs of my wrists simply painfully refused to meet.
I do struggle with pain when putting any weight on my wrists, but didn’t realise how much they had stiffened up, restricting their movement. Not being able to perform this movement doesn’t mean I actually have carpal tunnel syndrome. Nonetheless, I feel that given my previous concrete diagnosis, I was put through this painful and traumatic series of medical tests for no good reason.
This is the problem with a short assessment of complex conditions. Many of my problems and diagnoses go back years, and only some of them are summarised neatly on my consultant’s report. My relationship with my new rheumatologist started in April, my old one moved in 2015. My new rheumatologist decided to “challenge” the previous diagnoses of two former rheumatologists. Her report to my GP was woefully inaccurate because she had not read my notes or listened to what I told herLong story short, she re-diagnosed me, inaccurately, with fibromyalgia, she didn’t read my notes, she sent me for tests and scans I had already had previously, whilst suspending my treatment pending results. The scans and tests took months. That resulted in a serious lupus flare, which culminated in a bout of pneumonia and sepsis. During the time I was in hospital, I was re-diagnosed with lupus following abnormal test results. My having lupus is thought to be the key reason why I had got so ill – unfortunately, lupus leaves me very susceptible to serious infections like pneumonia, kidney infections and sepsis. I now have a new rheumatologist who says I definitely have lupus.
Atos say they won’t carry out ‘diagnostic tests’ but they did.
In the appointment letter from Atos, it says: “The Health Professional will talk to you about how your health condition affects your daily life”. Much of this was covered with the council’s initial care plan report, but I did discuss my health issues and barriers to independence at length during the assessment.
The letter from Atos then says: “This will not be a full physical examination or an attempt to diagnose your symptoms.”
My neck and shoulders are stiff, painful and I currently have limited mobility in them, yet I was asked to put my hands behind my head, raise my arms and so on. Loud joint cracking, popping, creaking and gasps of pain and my screwed up face didn’t stop the demands of what I felt was the impossible. I was actually sweating and trembling with the effort and pain, and still she did not stop the “examination”. I felt I couldn’t say no, as I would have seemed somehow unreasonable. I kept thinking that if I tried, gently, I was at least showing willing, and that would be okay, but unfortunately I wasn’t.
It’s difficult to equate these artificial manoeuvres with day-to-day activities, and therefore it is also difficult recognise the impact it would have on my mobility limits before I tried them and to gauge how much a movement in isolation is going to hurt.
Immediately following the examination/tests, my left calf has inexplicably swollen to twice its normal size, I could feel the uncomfortable tightness in it, and the swelling was visible through my jeans, whilst still with the assessor, and I commented on it.
My pain level has significantly increased everywhere. I had no groin or neck or elbow pain when I arrived until I was asked to do activities that were beyond my capability and that caused me a good deal of needless pain. I felt undignified trying to do those tasks, shocked and dazed at the pain, and sometimes, at how limited my movements have become. It was an extremely distressing and dehumanising experience. I was also shocked at how the effort made me tremble and sweat, and at how my clear distress was completely ignored by a so-called “health care professional”.
Of course I am going to make a formal complaint about this. It shouldn’t cause people so much pain and distress to be assessed for support. And any examination part of the assessment ought to take your medical conditions and descriptions of mobility constraints fully into consideration without such a grueling and painful examination regime.
It is worth bearing in mind that in addition to my own account, medical evidence from my rheumatologist was submitted in advance, and a report of recent assessments by a council occupational therapist who prescribed aids and adaptations, which clearly outlined my mobility difficulties, following two assessments, was also submitted.This was a report written by a qualified professional and was based on her own examination of my level of functionality and mobility while I tried to perform directed tasks in my home, such as climbing stairs, preparing food and using a bath board in my bathroom.
The fundamental difference between the assessments is that the one for my care plan allowed me to undertake tasks at my own pace, with dignity, and the Atos assessment did not. The former also felt like it was a genuine assessment of my needs, with support being the aim, whereas the latter felt like some sort of skeptic’s test to see if a way could be found to claim my account and those of my doctors were somehow incorrect. The Atos assessment was so horrifying because it felt like it was about reluctantly providing support for maintaining my independence as a very last resort only.
According to the government’s PIP handbook, for a descriptor to apply to a claimant they must be able to reliably complete an activity as described in the descriptor. Reliably means whether they can do so:
safely – in a manner unlikely to cause harm to themselves or to another person, either during or after completion of the activity.
The descriptors at no point demand that a person completes the Phalen manoeuvre or squats. The brief and painful completion of raising your hands above your head does not demonstrate either a fluctuating ability to do so, or your ability to hold your arms up long enough to, say, wash your hair and rinse it, even on a good day. Nor does it adequately account for severe pain, profound fatigue, coordination difficulty and breathlessness that often impact on any performance of that task. I did point this out, and the fact that the activities had left me in a lot of pain.
It’s now the day after my PIP assessment. I am still in a lot of pain with my joints and tendons. I feel ill, anxious, depressed and I am still shocked and angry. I can’t even manage to wash today. I have also developed pain on the left side of my chest, which feels rather like pleuritis. I feel really unwell, profoundly tired and haven’t felt this bad since my bout of pneumonia. The assessment hasn’t made me ill – I was already seriously ill. But it HAS exacerbated by symptoms.
No-one should be made to feel worse because of an assessment for support. The activities I was asked to do should have been stopped when it became clear I was struggling. I stated I was in pain, I was visibly sweating, trembling, weak and clearly in a lot of pain with the effort, and as a “health professional”, the assessor should have halted that examination. I am very concerned that unintended harm may be caused by assessors conducting examinations because they do not have qualification, sufficient information or understanding about patients’ conditions.
My condition, for example, has left a trail of individual symptom diagnoses and medical data that goes back many years. With such a complex array of joint and tendon problems, I felt that there was absolutely no consideration of the impact that, say, a hand and wrist manoeuvre may have on a person’s damaged shoulders and elbows, as well as their wrists, or how a neckmovement may impact on an upper spine injury and inflammatory shoulder problems, as well as the neck.
Given the assessment report I submitted and medical evidence, in addition to my own account, I feel that such a painful physical examination ought to be restricted to cases of absolute necessity. I don’t believe those simple isolated movements I was asked to do can possibly demonstrate he complex limitations on my day-to-day independence, and how I manage (or don’t) to cope with domestic tasks and general mobility.
The fact I couldn’t do some of them was both traumatising and humiliating, as well as very painful. I am still in a lot of pain as a result.
The shame of being there to explain to a stranger about your illnesses, the intimate details of your life, your vulnerabilities and why you need help, is difficult enough, without the added distress of being coldly assessed by someone who doesn’t understand your conditions and does not care that what they ask you to do may be traumatising, painful and potentially very damaging.
I don’t make any money from my work. But you can support Politics and Insights and contribute by making a donation which will help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated, and helps to keep my articles free and accessible to all – thank you.
The government have persistently denied that there is a “causal link” between their welfare “reforms” (a Conservative euphemism for savage cuts) and an increase in suicides, premature deaths, psychological distress and severe hardship. However, a number of researchers and many campaigners have demonstrated a clear correlation that the government have so far refused to investigate further. Correlation quite often implies a causal relationship, and as such, requires further research.
Each case that has been presented to the government as evidence that their policies are causing severe harm has been dismissed as “anecdotal”.
Dr Simon Duffy, Director of the Centre for Welfare Reform said: “It is not enough to just stop introducing new policies to attack the rights and lives of disabled people and the poorest in society. These policies have been in place for six years and many are designed to increase poverty year on year. The Government should apologise for the harm it has caused since 2010,calculate the full impact of cuts that targeted the most disadvantaged and begin a full programme of reparations.”
This is the third harrowing article I have written this week about the devastating impact of the Conservatives’ punitive welfare policies on some of our most vulnerable citizens. I wish with all my heart that this is the last such article.
There will continue to be a need of witnesses like myself and other campaigners until the political denial stops.
Last month, an inquest in Ipswich heardhow Peter, a disabled man, struggling to cope with mental health problems, committed suicide by setting himself on fire because of fear that he would lose his lifeline support, following his compulsory re-assessment for Personal Independence Payment (PIP).
The government introduced the controversial PIP to replace Disability Living Allowance (DLA) in order to save costs and to “target those most in need” in 2013.
Peter Sherwood set fire to himself in front of horrified onlookers in Lowestoft town centre on September 4, 2015. The retired builder died in Broomfield Hospital, Chelmsford, which has a specialist burns unit, on September 8, 2015, following the horrific incident in Lowestoft town centre four days before.
Peter had received a letter from the Department for Work and Pensions, informing him that his DLA was ending and that he needed to reapply for PIP.
He suffered with a recurrent depressive disorder and psychosis. Peter had attempted to take his own life on a number of occasions previously. He also had a condition called tardive dyskinesia, which caused involuntary movements to his mouth and is a known side-effect of anti-psychotic medications.
Giving evidence at the inquest, Lucinda Stapleton, care coordinator from the Waveney Recovery Team, said this had affected Peter’s self-confidence as he was worried people were laughing and staring at him when he left the house.
In a statement read during the hearing, Mr Sherwood’s niece, Sarah Wilby, said: “I knew he was feeling a bit low the last time I saw him, which was two weeks before he died. He held me close on the sofa and told me he loved me.
“He was a loving person and had a great sense of humour.
“He was angry at many things in life, but could put a good front on.
“I loved him very much and miss him dreadfully.”
Ms Wilby said she was shocked at the drastic way her uncle took his own life.
She added: “He seemed to want to make some kind of a statement, but I don’t know what.”
During the inquest Ms Wilby said that Peter was claiming Disability Living Allowance but not long before his death he received a letter informing him he needed to reapply for Personal Independence Payment, which she believes contributed to his low mood at that time.
She said: “I personally think quite anunderlying cause of his anger was the change in benefits.
“Knowing Peter as we did that would have had a huge impact on him.”
Paul Anderson, a community support worker for the Norfolk and Suffolk Foundation Trust, said Peter had claimed that the Government was trying to take money off him.
The Coroner, Peter Dean, read statements from witnesses, who described seeing Peter spraying something on the pavement starting with the letter ‘h’ with an aerosol can.
The inquest heard passer-by William Groves asked Peter if he was a street artist, to which he replied “no, I’m a suicide artist”.
Peter then poured liquid over his head and set himself on fire using a lighter.
Members of the public tried to douse the flames by first throwing their jackets onto Peter, and then using a fire extinguisher from a nearby shop.
Police at the scene reported that Peter had muttered the word “humanity” to them a couple of times following the incident.
On September 4, 2015, Peter was visited at home by the community mental health team and he had expressed plans to end his life.
An urgent appointment was made for Peter to see a psychiatrist the following week, but it was tragically too late.
Norfolk and Suffolk NHS Foundation Trust has since updated its criteria of when patients should be referred to the 24-hour crisis team, following its routine investigation into Peter’s death.
The medical cause of death was given as 75% non-survivable full thickness burns, and mental health concerns.
The coroner’s conclusion was suicide.
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If you are experiencing distress and feel suicidal, please don’t suffer in silence. The Samaritans have launched a free telephone national helpline number, 116 123.
People who are going through a difficult time can access the service round the clock, every single day of the year.
This number is free to call from both landlines and mobiles, including pay-as-you-go mobiles. You do not need to have any credit or call allowance on your plan to call 116 123.
I don’t make any money from my work. I am disabled because of illness and have a very limited income.
But you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.
Susan Roberts was found dead because of a morphine overdose (Photo: Philip Coburn)
A disabled mum, Susan Roberts, was found dead at home following an overdose of morphine. Susan died just metres away from a heartbreaking 11-page letter she had written to the Department for Work and Pensions (DWP), detailing her suffering following being told she wasn’t eligible for Personal Independence Payment (PIP).
Susan, a grandmother of eight, had survived four heart attacks. She died £4,000 in debt, after taking a fatal overdose within hours of being informed that her claim for PIP was unsuccessful. She had previously claimed Disability Living Allowance (DLA) and had been given an indefinite award, as her medical conditions were considered highly unlikely to get better.
The letter from the Department for Work and Pensions(Photo: Philip Coburn)
Susan was asked to apply for PIP by the DWP following the proposed closure of her DLA claim. Many people who have previously been eligible for DLA have found that they lose their support once they are reassessed for PIP. The government introduced PIP to replace DLA and to cut costs in 2013, as a part of their welfare “reform” programme, which inflicted cuts on the poorest citizens. The Conservatives claim that PIP “targets those most in need”. However, many people with the highest level of needshave been turned down for PIP after having indefinite or lifetime awards of DLA.
Susan’s tragic death also highlights that despite their claims, the government are not succeeding in “targeting the most vulnerable people”
Before taking a fatal dose of morphine, Susan had placed the paperwork from the DWP, which informed her that she had been turned down for PIP following mandatory review, a Do Not Resuscitate note and her unsent letter, on her dresser.
Susan was shocked when she was informed that she did not even qualify for an award of PIP at the lower rate.
She began her heartbreaking letter: “Dear sirs, first of all, I request that you read this through carefully – this is my life after all.”
She said: “I am in a considerable state of depression after receiving your decision about my claim for PIP.”
Describing her health, she said: “My gall bladder needs to be removed because of multiple stones, weight loss, vomiting, excruciating pain – but specialists won’t operate because of my heart condition.”
She then describes the impact of suffering from ME, and explains that she can only manage to do tasks for just two or three hours a day.
Susan had a stent fitted after herheart attacks and spent most of her time bedbound, largely due to also having ME.
An operation to remove part of her bowel meant she needed help to go to the toilet. She also needed help with her personal care, such as showering and with shopping, as she struggled to walk. But in late 2015, the Conservatives scrapped DLA and replaced it with PIP. Anyone 65 or older on April 8, 2013 still got DLA.
Susan’s daughter, Hayley Storrow, said: “It’s so sad. If she was born a week earlier she may have still been alive today.”
Susan’s PIP assessor had somehow erroneously decided that she could wash and bathe unaided, go to the loo and walk over 200 metres. Shockingly, this type of “error” and gross inaccuracy isvery commonplace in the reports produced when disabled people are assessed for their lifeline support. In fact, earlier this year, the Labour party, the Green party and the Liberal Democrats called for the government to act on claims of widespread dishonesty by the medical professionals paid to compile benefits assessment reports, following a two-month investigation by Disability News Service.
Susan added in her letter that she would be virtually housebound without her Motability vehicle and her concluding comment is: “Thank you for reading this, with the greatest respect.”
She lost her Motability car last April because of the DWP’s decision not to award her PIP. Susan had sent a heartbreaking text to her daughter, Hayley, saying: “I’m never going to be able to see you again because they are taking the car.”
The PIP is supposed to help with the additional costs of being disabled, and in supporting disabled people in maintaining their independence and dignity, but many people are being denied the benefit because they are not assessed properly, and because the eligibility criteria have been made increasingly restrictive.
This means people previously eligible for the mobility component of DLA lose their cars and wheelchairs once they have been reassessed for the new PIP, if they don’t qualify for the mobility component. For many disabled people, this is a massive blow which impacts on their ability to remain independent, take part in their communities or get and keep a job. PIP is not means tested, so disabled people in work may claim it to help with additional support and extra costs. Many people losing their Motability vehicle will no longer be able to work.
Susan had asked for a review of the DWP decision following her first appeal. On 18 May last year, a letter arrived at her warden-assisted flat to tell her that the PIP award had been turned down yet again.
She was found dead the following morning and despite the letter and papers left out on the dresser, remarkably, a coroner said in October that she “had not taken her own life as there was no suicide note”, ruling it was a “drugs-related death”.
However, her daughter, Hayley, said: “I believe her unsent letter was her suicide note.”
It’s highly unlikely that an accidental overdose would have somehow prompted Susan to include a Do Not Resuscitate note with her letter and the bundle of DWP paperwork, too.
Do Not Resuscitate (DNR) orders are basically notes kept in a patient’s file that they do not want to be resuscitated should their heart stop. The medical establishment views DNR orders as the patient’s choice, though they do request that those considering DNR orders to discuss it with their family members. DNR orders may be requested by patients for a variety of reasons, all of them designed to keep the patient from suffering further. However, DNR laws do not take into account the situation of mentally ill patients framing a DNR order as a preparation for suicide.
The fact that Susan left the DNR note out with her letter and bundle of DWP documents indicates that her overdose was not accidental.
The Coroner’s verdict
By the end of 2015 it had emerged that the UK had experienced the largest annual spike in mortality rates for nearly 50 years.
Much media coverage seems to avoid reporting suicide as a response to structural conditions, and instead tends to emphasise suicide as an outcome of “mental illness” – as an individual act, rather than a problem that is influenced by socioeconomic and political conditions. The government has attempted to reconfigure wider social and economic problems as psychological problems, which has pushed highly politicised individual clinical and state therapeutic interventions – embodied in a rise of the mass provision of cognitive behavioural therapy and mandatory “attitude adjustment” classes for welfare recipients in the UK. This approach reflects political ideology and prejudices, rather than tackling the bigger issues of social inequality, poverty, lack of opportunity and an extremely punitive welfare regime. All of which are largely shaped by government policies.
Earlier this year, the Samaritans pubished their report Dying from Inequality, whichclearly recognised rising socioeconomic inequality with a higher risk of suicide. The charity called on the government to direct support to those with unstable employment, insecure housing, low income or in areas of socioeconomic deprivation.
Mary Hassell, the senior coroner for inner North London, wrote directly to the DWP in 2015, stating that the suicide of Michael O’Sullivan, a disabled man who hanged himself, had been adirect result of being ruled “fit to work.
The coroner’s verdict of Michael O’Sullivan’s suicide is widely seen as ground-breaking by disability rights campaigners and groups like Disabled People Against Cuts (DPAC) because the DWP, the media and charities usually frame suicide as “complex” with no single cause, which means suicide has rarely been directly linked to the austerity programme, nor have government policies more generally been seen as directly responsible for suicides.
Suicide is a significant social problem. Over 800,000 people commit suicide every year. Many of these can be quite properly understood as “economic suicides” because they take place against a backdrop of structural adjustment policies and rampant neoliberal market-led reforms. A counter discourse to the government tendency of psychologising socioeconomic conditions, making them the responsibility of individuals, rather than government and wider society, is of course crucial.
Technically, a coroner makes a finding of fact at the end of an Inquest. The coroner cannot attribute blame to any individual and cannot imply a criminal or civil liability, by law. The Coroner must use the evidence heard to decide who the deceased person was, where they died, when they died, and what the cause of their death was. Commonly, the “finding of fact” is referred to as a verdict or conclusion. A conclusion of suicide is decided where the evidence indicates a person has voluntarily acted to destroy his or her life in an intentional way. Inquest verdicts of Suicide (and Unlawful Killing) must be decided “beyond reasonable doubt”. Other causes of death may be decided on “a balance of probability”.
However, there is evidence to suggest that suicides are being under-reported because of the change in Coroner’s statutory regulations and guidelines, in 2013. Interestingly, contrary to the current trend in health and safety inquests, the Ministry of Justice guidance tells coroners that, wherever possible, short-form conclusions should be delivered, rather than the more detailed narrative conclusion.
Furthermore, open conclusions are discouraged, to be used only as a “last resort”. Concerns have been raised about the government’snew short-form conclusions and some organisations, including the Royal College of Psychiatrists, have asked the government to give due consideration to changing the standard of proof required for suicide verdicts. The 2013 reforms also enable the government to suspend an independent inquest into any death in favour of an inquiry, which under the Inquiries Act 2005 can be now be held in secret.
The House of Commons Health Committee Suicide prevention: interim report Fourth Report of Session 2016–17 says: “Our evidence suggests the need for a more rapid provisional notification of suicide at the time when a suspected death by suicide occurs. We recommend that the Government take action to improve consistency between coroners and to make routine the use of provisional notifications of suicide. Furthermore, we recommend that the standard of proof for conclusions of death by suicide should be changed to the balance of probabilities rather than beyond reasonable doubt.”
Rule 43 of the Coroners Rules (1984) states that if the Coroner is of the opinion that a death could have been prevented if different action had been taken by a particular person or organisation, he/she may make a recommendation for change. Also, the scope of the coroner’s investigation must be widened to include an investigation of the broad circumstances of the death, including events leading up to the death in question, where this wider investigation is necessary to ensure compliance with Article 2 of the European Convention on Human Rights (right to life). The positive duty to protect life implies a duty to investigate unnatural deaths, including but not confined to deaths in which state agents may be implicated.
Hayley has accused the government of having blood on their hands. She said: “People are living in poverty or considering suicide because of these benefits changes. My Mum won’t be the last to die.”
A DWP spokeswoman said: “Our thoughts are with Mrs Roberts’ family but there is no evidence to suggest any link between her death and her benefit claim.”
There is no evidence to suggest it isn’t, either, without further investigation, which so far, the government have refused to do. There is an established correlation between disability benefit assessments and increased mental health problems, distress and exacerbations of physical illness symptoms, too. While correlation isn’t necessarily the same thing as causation, it quite often implies a causal link, which may only be ruled out following further investigation, rather than political denial.
The DWP has quietly carried out investigations into 60 cases where benefit claimants are said to have taken their own lives. Labour MP Diana Johnson said the figures cast doubt on claims that there is no link between suicide and welfare re-assessments, with the DWP carrying out the internal reviews over the last five years.
Johnson said: “Ministers have repeatedly claimed there to be no link between suicide and welfare re-assessment whenever figures have come to light.
“This parliamentary answer to me blows this claim out of the water.
“If there was no link, there wouldn’t have been 60 reviews of suicides in the past five years.
“I am appalled that these figures have remained unpublished for so long.”
A written parliamentary question from the Hull North MP revealed that the DWP carried out 15 internal reviews into suicides or alleged suicides of so-called DWP “clients” in 2012/13 alone.
“Families who’ve been left in the dark need to know everything the DWP knows about these cases,” Johnson said.
“Most importantly, we need a welfare system that supports, rather than victimises, the poorest and most vulnerable in our society.”
Susan’s daughter, Hayley said: “When my brother went to mum’s flat after she died, he found 37p in her purse. Even with DLA she was living day to day, scraping by. She was found dead with the PIP refusal letter placed strategically on a dresser.
“She was a poorly woman and this decision tipped her over the edge – she was in a desperate situation. I feel if it wasn’t for PIP and the Tory Government, my mum would still be alive.
“They failed her like they have failed thousands.”
Susan wrote the 11-page letter criticising the decision and outlining her circumstances but as the DWP turned down her initial appeal within six days, she did not have time to send it.
Hayley said: “I just want Theresa May to know that her rules and regime are killing the most vulnerable people in society.
“With the election coming up, it is so vital that things change.
“I feel any vote for the Tories is going to lead to more deaths.”
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If you are experiencing distress and feel suicidal, please don’t suffer in silence. The Samaritans have launched a free telephone national helpline number, 116 123.
People who are going through a difficult time can access the service round the clock, every single day of the year.
This number is free to call from both landlines and mobiles, including pay-as-you-go mobiles. You do not need to have any credit or call allowance on your plan to call 116 123.
I don’t make any money from my work. I am disabled because of illness and have a very limited income. The budget didn’t do me any favours at all.
But you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.
It’s rapidly becoming clear that Prime Minister Theresa May’s bold pledge to create a Britain that works for everyone should have an asterisk attached to facilitate the addition of “except for those pesky people with disabilities, can’t we pack them off somewhere else?”
In recent days the Government’s plan to cut people with serious mental health conditions out of eligibility for personal independent payments has justifiably come under sustained fire.
However, the attitude problem displayed by both May’s administration, and that of her predecessor David Cameron, goes beyond that, as a delve into the latest statistics demonstrates.
What they show is that the number of appeals against decisions made by the DWP on the basis of assessments made by the private, profit driven contractors working on its behalf is increasing at a similar speed to that at which Lewis Hamilton exits Silverstone corners.
They show that there were 60,600 Social Security & Child Support appeals between October and December 2016, an increase of 47 per cent. Even Lewis might think twice about acceleration like that.
Some 85 per cent of those appeals were accounted for by the Personal Independence Payment (PIP) and the Employment & Support Allowance (ESA).
The rate at which the decisions made by the DWP on the basis of information supplied by the Government’s contractors – Capita and Atos – are overturned is also increasing.
People started taking notice when it was running at 50 per cent. Now close to two thirds of appeals in the case of the PIP (65 per cent) are successful. The figure is higher still when it comes to ESA (68 per cent).
I’m given to understand that the people who sit on tribunals have been asked to keep June clear, in an attempt to reduce a growing backlog. So forget about an early summer holiday.
Needless to say, these people have to be paid, which puts extra cost into the system at a time when the Government says it’s trying to save money.
Simply applying for either benefit causes a great deal of stress to people with disabilities. Having to go to appeal only exacerbates that. Applicants find themselves in the middle of a process that is humiliating and dehumanising.
That process also seems to throw up scandals with alarming regularity. Channel Four, for example, infamously filmed a Capita assessor saying a claimant had a “disability known as being fat”. Another claimed to have filled out forms before even seeing clients amid pressure to get as many done as quickly as possible.
Other scandals have involved people with weeks or months to live being told they’re fit for work in the case of ESA, which is paid to people whose fitness to do so is impacted by medical conditions and disabilities.
Set against that backdrop, is it any wonder that there has been so much criticism of the process, and so many successful appeals?
If the assessment process worked effectively, and as it should, the number should be limited, and you wouldn’t expect such a large majority to be successful.
Ken Butler, welfare rights advisor at Disability Rights UK, says he is “very worried for all those disabled people who get turned down for benefits and don’t have the time or energy to challenge poor decisions made by the Department for Work and Pensions (DWP)”.
He adds: “We’d advise all claimants to get benefits advice and, if they are turned down, to use the independent appeals process.”
Butler says that the high success rate of appeals clearly demonstrates that there is something wrong with the system.
Unless, of course, the system, also savagely criticised by the United Nations, was deliberately set up to be this way.
Before you suggest that is me indulging in a conspiracy theory, take a moment to think about this. If you make something difficult, stressful and painful, if you litter it with traps, and take the view that everyone getting involved in it is a dirty scrounger until proven otherwise, a lot of people will get put off and won’t apply. Still more won’t appeal when turned down, saving the Government money it can use for things like millionaires tax cuts.
Dealing with a disability presents enough of a challenge as it is, without having to get to grips with a state that operates in a manner that would have impressed some of George Orwell’s darker characters. Would anyone be terribly surprised to find O’Brien working as a civil servant in the DWP?
The cynicism on display is breathtaking, if my assessment is correct. Alternatively, the situation I’ve discussed could simply have been created by a toxic mix of bureaucratic callousness and incompetence.
The net effect is the same regardless, which is why there will be peals of bitter laughter emanating from Britain’s disabled community every time those words of Theresa May’s are trotted out.
You’d be able to hear them if it weren’t for the fact that so many people with disabilities are now trapped in their own homes.
Research conducted by academics at Edinburgh’s Heriot-Watt and Napier universities confirms what many of us already knew: that the government’s “fit for work” assessment is causing permanent damage to some people’s mental health, from which they are not recovering.
The researchers say in their report that the Work Capability Assessment (WCA) experience “for many, caused a deterioration in people’s mental health which individuals did not recover from”.
The study comes at the same time as John Pring, journalist from the Disability News Service (DNS) has exposed private provider Maximus in their use of “brutal and dangerous” questions about suicide intention directed at people with mental health problems during their assessments.
Dr Jay Watts, a clinical psychologist and academic, told DNS that people should only be asked about suicidal ideation by a trained mental health professional who can offer help, or someone in an “existing trusting relationship with the individual”.
Watts said that WCAs were “degrading and humiliating experiences for most if not all claimants” and were carried out in a space which was “not a trustworthy one”.
She said: “Individuals are required to parade their distress and feel compelled to answer intrusive questions (for the means to live relies on this).”
She went on to say: “To ask about suicide or self-harm in this context brings huge risks.”
She added that such questioning “can be suggestive if the environment is unsafe.”
She said that claimants were “battered with multiple questions about that which is most personal” in disability assessments and questioned about suicide while the assessors are “typing away” on their keyboards.
Watts concluded: “I have no doubt that questions on suicidal ideation, and the degrading manner in which they are asked, are one reason behind the suicide spike associated with the WCA process.”
Of these, no fewer than 40 were conducted following the suicide, or apparent suicide, of a person claiming benefit. This is both profoundly shocking and entirely unsurprising. It is the wholly predictable result of a system designed and operated by people who appear to lack even the most basic understanding of the realities of living with mental illness.
Despite providing reports from three doctors, including his GP, stating that he had long-term depression and agoraphobia, and was unable to work, O’Sullivan was taken off employment support allowance (ESA) and placed on jobseeker’s allowance. The decision to find him fit for work was made after an assessment by a Department for Work and Pensions (DWP) doctor, a former orthopaedic surgeon, who did not factor in the views of any of the three doctors treating O’Sullivan.
Work capability assessments discriminate against people with mental health problems and should be “redesigned entirely”, according to Professor Abigail Marks from Heriot-Watt University’s Centre for Research on Work and Wellbeing. This recent study also established, through dozens of in-depth interviews of people who had been through the tests, that “in the worst cases, the WCA experience led to thoughts of suicide”. Mental health charities said the contents of the interviews “reflect what we hear from people every day”.
The researchers interviewed 30 people with existing mental health conditions who had taken the tests throughout 2016. The majority of subjects suffered from depression or anxiety, whilst a smaller number had more complex issues like bipolar disorder or borderline personality disorder. In addition, the team interviewed individuals from advocacy organisations, Citizens Advice Bureau and a former employee of Ingeus, one of the private Work Programme providers.
Marks said: “It is unacceptable that healthcare professionals who act as assessors for the WCA, for example, physiotherapists, nurses, occupational therapists are not fully qualified or trained to assess mental health conditions, yet they seem to be able to override participants’ own GPs, community psychiatric nurses, and therapists.
The WCA must be entirely redesigned, and focus on the potential barriers to work for both physical and mental health problems.”
The report also highlighted that WCAs make non-Work Programme work experience, or other voluntary work, almost ‘impossible’ for people with mental health conditions.
Dr Gavin Maclean, research assistant at Edinburgh Napier University, said: “Many of the participants in the study found the experience of the WCA so damaging that they stopped engaging in work-based activity and did not return to it.
This could further reduce their long-term employability and potentially increase their dependency on benefits.”
Dr Sue Cowan, assistant professor of psychology in the School of Social Sciences, said: “For people with severe and enduring mental health conditions, voluntary work may be as ‘good as it gets’, as one of our participants stated.
This does not mean a failure to obtain more. Rather, it is a recognition that an individual is making a choice, and the current system does not recognise or support that in any way.
The assumption that engaging in voluntary work means an individual is fit for employment should be scrapped; there has to be much greater flexibility about undertaking training while on ESA and much greater value must be placed on voluntary work and work-preparation activity.”
The qualitative study highlights in particular a lack of expertise in mental health problems among WCA assessors and advice from the WCA that was not consistent with what people going through the assessment had been told by their own GPs. In one case recorded in the study, a participant recounted a doctor “actually physically gasping” during an appeal because of the poor quality of evidence recorded by a WCA assessor.
Some participants reported being in tears or having panic attacks during the tests, and others told the researchers that the assessments were “making me feel worse”.
The researchers said that the extreme stress having to deal with multiple stigmas of being unemployed and having a mental health condition became “self-reinforcing and self-perpetuating”, leading to the deterioration of peoples’ condition.
It says in the report: “Our research has reinforced the fact that people with mental health problems face more stigma and discrimination than those with physical health conditions and that this discrimination is built into the WCA.”
Professor Marks, the lead author of the study, who is based at Heriot-Watt University, told theIndependent that people who worked closely with such cases reported that deterioration in mental health conditions was an “almost universal” response to the tests.
Key causes of extreme stress were said to be a claimant’s fear of losing their lifeline income, the prolonged nature of tests, a lack of specialist mental health training amongst assessors, and the fact the test was “clearly geared towards people with physical disabilities.”
This said, many people with physical disabilities have also stated that the WCA experience has had an adverse effect on their mental health.
Marks says: “A lot of the people we spoke to were in a position where they are preparing to go back to work before their assessment – they were doing training courses, community initiatives, or volunteering.”
“They said that after the assessment, because the assessment had caused them so much stress, they were unable to go back and take part in those activities because their mental health had had such a deterioration.
“Talking to the advocacy workers, as well, they said it was almost universal that after people had gone through an assessment there was a significant decrease in their mental health.”
In October last year the Government announced that it would stop repeat Work Capability Assessments for people with chronic conditions, characterising the repeat assessments it was scrapping as “unnecessary stress and bureaucracy”.
Mental health charity Mind said the WCA was clearly “not fit for purpose” and that its lengthy and costly appeals processes could well make matters worse.
“The findings of this report are concerning but sadly not surprising, as they reflect what we hear from people every day,” Ayaz Manji, the charity’s policy and campaigns officer, said.
“People with mental health problems tell us that the current fit-for-work test causes a great deal of additional anxiety. We know the assessors rarely have sufficient knowledge or expertise in mental health, meaning many people don’t get the right outcome and then have to go through a lengthy and costly appeals process.
“The current approach is not fit for purpose and needs to be replaced by an open and honest conversation based on each person’s individual needs.”
Debbie Abrahams, the shadow work and pensions minister, said the study was more proof that the WCA “is not only unfit for purpose, but is causing harm to some disabled people”.
She added: “That’s why I have committed Labour to scrapping these assessments completely and replacing them with a holistic, person-centred approach.”
As usual, a Department for Work and Pensions spokesperson dismissed the interviewees’ experiences as not “statistically significant”.
Apparently, qualitative data doesn’t count as “empirical evidence”, or contribute to it. Or put another way, if the government don’t want to count it, it doesn’t count.
The spokesperson said: “Only thirty people were interviewed for this report, which fails to acknowledge any of the significant improvements we have made to our assessments – particularly for people with mental health conditions.”
“Last year alone at least 35,000 work capability assessments took place in Scotland to help ensure people get the right level of support that they need.”
In fact, 37 interviews were conducted for the study. Furthermore, there is much evidence outside of this study that supports the findings. Qualitative evidence often provides richer, more in-depth, detailed evidence than quantitative studies tend to permit. Yet the government insist that citizens’ own accounts are not important, regularly dismissing them as “anecdotal”.
The government have also failed to conduct a quantitative investigation into the established correlation between WCAs and a deterioration in mental health conditions.
In 2015, the “fit for work” tests, introduced to assess eligibility for disability benefit ESA, were again found to have caused relapses in patients with serious mental health conditions, Dr Jed Boarman, consultant with the Royal College of Psychiatrists, called for an overhaul of the process.
Boardman, a consultant psychiatrist at the South London and Maudsley NHS trust, also said the WCA discriminates against those with mental health issues.
Boardman, who treats patients with serious and long-term mental health problems, said: “People with severe long-term problems get very distressed about being assessed, probably because mistakes are made, because the process isn’t perfect, because they don’t feel they are being listened to in their interviews.
“You do see people relapsing as a consequence of getting distressed.”
His comments followed a study, published the previous month, that linked the WCA tests with an additional 590 suicides, increased mental health problems and hundreds of thousands of antidepressant prescriptions.
The study, published by the Journal of Epidemiology and Community Health, showed a correlation between worsening mental health and assessments under the WCA.
The Department for Work and Pensions described the study as “misleading.”
The study’s main author, Benjamin Barr, said it was crucial the DWP takes seriously concerns that WCAs are “severely damaging” mental health. He called on the department to release data it holds to researchers to allow further analysis of the health impact of the controversial test.
Boardman added: “Their primary criticism of our study is that we don’t have data specifically on people going through the WCA and consequent mental health problems,” said Barr, from the University of Liverpool. “They have data on who has died following the WCA and they could facilitate linkage of that data with health causes.”
Thousands of claimants have died after being found fit for work, according to statistics released in August 2015 by the DWP, following a freedom of information requestand a determined and successful court appeal by Mike Sivier of Vox Political. Ministers insisted that the figures they have released could not be used to link claimant deaths to welfare reforms, but the government has refused to release figures that would make it possible to assess whether the death rate for people found fit for work is higher than normal.
Boardman and Mark’s concerns are echoed by psychologists and benefit advisers working with claimants, who say they have gathered a lot of qualitative evidence that WCAs cause much additional psychological distress for those with mental health issues.
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