Written evidence submitted by Spartacus (WCA0159)
ESA is based on flawed principles.
The activities used in ESA are medically based, referring not to skills or qualifications but to functional ability. The wider context is deliberately excluded. GPs however have previously suggested that social factors should be considered when assessing capacity for work.1 In our survey, 94% of respondents said that wider factors should be taken in account. International evidence also shows that valid assessments of capacity for work must include factors beyond medical function.2 None of the factors suggested in our survey received less than 60% support.3 That ESA does not consider these is a major flaw.
Sarah has ME. She lives with her parents who run the house for her. Travelling is as, or more, tiring than work. She takes regular rests and can manage only a few hours of computer-based work a day. She can’t guarantee to meet deadlines as the amount and productivity of work she does varies on an unpredictable basis. Her previous work was in research. The most suitable work for her is desk-based work from home without deadlines or pressure. Her skills – research – therefore match well with her capabilities.
Household chores, caring responsibilities and commuting would all reduce the paid work she could do. Consequently, the work she can do is not just a function of her condition (ME) and its effects on her, but also what home responsibilities she has, the location of her work and the matching of her skills to her abilities.
Mr Grayling made it very clear that he would not accept a real world test,4 but it is not clear that this is an appropriate approach. Because ESA deliberately does not consider what work might be possible, it also ignores what support would be needed and whether that support exists (ESA was originally supposed to consider these issues but this part was dropped following difficulties surrounding the timing of its implementation5). Consequently people can be found fit for work yet still be unable to carry out work.
ESA is unable to adequately assess people with mental health conditions6 or with fluctuating or variable conditions.7 The points-based system is particularly unsuited to chronic illness as it assumes problems are additive; e.g. that being unable to perform two three-point activities is equal to being unable to perform a six-point activity. Spartacus has seen no evidence that this is the case and the experience of disabled people may indicate a greater-than-additive interaction (e.g. two three-point activities might equal one nine-point activity). A more suitable approach may be that used with DLA where general statements that can be fulfilled in a number of ways are used; an example might be ‘unable to work X hours a week’ which, if set at an appropriate level, could be used as a qualifying criterion for ESA.
The lack of consideration of interaction between different activities, the simplicity of the activities considered and the expectation that a difficulty must be present the majority of the time all demonstrate how focussed ESA is on static impairments such as sight loss, hearing loss or paralysis where limitation may be high and constant in a specific range of activities; in contrast, chronic illness can bring diffuse, moderate impairment in a large number and range of activities, but this is not captured well by ESA. These people may however be more disabled, as technology is less able to address such diffuse impairment, and because carrying out one activity often impacts another that superficially appears unrelated.
ESA is too harsh
The precursor to ESA was, jointly with the US system, the harshest amongst OECD countries,8 and ESA is even harsher. The low employment rate of people told they are fit for work (25% 12-18 months after claiming ESA9) may be indicative of substantial health needs remaining in this population. Respondents to our survey agreed generally that ESA should be expanded to include more people (83% agreed). Research by the Spartacus network (in preparation) indicates that incapacity for work may be as much as 3-3.5 million people. The increase in chronic illness and rising pension age do not support reduced incapacity benefit caseloads from the current level of 2.5 million, as is likely (even intended) to occur with ESA.
Groups that may merit, but currently struggle to receive, the support of ESA include
This latter group can be amongst the most excluded: blind or deaf people, for example, may be fully capable of work given the right technology, but the large majority of employers find these groups difficult or impossible to employ; far more so than, say, employing someone with epilepsy.10
These three groups may be candidates for the ‘WRAG’ component of ESA – people who may be able to work, given the right practical and financial support to do so, but for whom JSA is unlikely to be appropriate. WRAG currently seems to be poorly thought-through, with little difference in employment between WRAG and SG (9 and 10% respectively9). Particular flaws centre around where someone cannot currently work and has a long-lasting, permanent or degenerative condition, yet still has to undertake ‘work-related activity.’ A more appropriate population for this group might be those who may be able to work given the right support; the purpose of WRAG would then be to give that support.
Daniel has EDS. He manages his condition by working part-time hours at twenty hours a week. It is important that he exercise to maintain muscle strength, but this has to be carefully monitored so he is most suited to desk-based work with little walking. If he did not exercise he would in the short-term have more energy for work but in the long-term his capacity would reduce; consequently, it is important that assessments of work factor in the necessity of setting some hours aside for exercise. Most part-time jobs are low-paid and there is less opportunity for advancement.11 Daniel moved to part-time work from full-time work and does not receive DLA so cannot receive any tax credits. However, he is struggling hugely on low-paid, low hours work and needs a benefit that would top-up what he earns.
ESA is not well assessed.
Assessment forms can be a valuable tool but also present many claimants with difficulties; the ESA50 seems to be particularly confusing, difficult and repetitive. Professor Harrington recommended that the questions be more closely tied to the descriptors but this has not occurred. 58% of respondents to our survey felt that a claim form should be optional.
88% of respondents felt that medical evidence should always be included – more than those who said an ESA50 should always be included. In the year up to May 2013, Atos requested evidence in 30% of cases;12 fewer than 40% are returned within the two-week deadline and 71% are returned in total.13
Disabled people have frequently suggested that it would be more appropriate for their GP to carry out the assessment, as this is the person who knows them best. GPs however feel they are not trained to carry out such assessments, lacking knowledge of the workplace either generally or specifically to the claimant’s work. Respondents to our survey predominantly wanted their GP (30%) or another doctor who knows them well (21%) to carry out the assessment. Of the other options given, having a medic carry out the assessment was most popular followed by occupational health practitioners and lastly employment advisers. In each case, respondents said the person concerned must be specialised in the condition of the claimant – regrettably this is not currently the case.
Respondents overwhelmingly wanted the decision maker to also be a doctor, with some support for employing another disabled person or asking the assessor to decide. Very few supported having a lay-person trained to make such decisions as the decision maker.
Placement in the WRAG seems in some cases to be based on a prognosis given by the Atos assessor. The Atos assessment is one of function, not diagnosis. The assessor is not trained, qualified or equipped to make judgements of prognosis.
The regulations say that a claimant cannot be treated as having LCW if risk to health could be reduced by taking medicine prescribed by their GP. However, many medicines have side effects that can be more disabling than the condition for which it is prescribed. These include heavy sedation and addiction, as well as contra-indications with other medicine or health conditions. Several respondents indicated that the side-effects of their medication were not taken into account despite their severe disabling effect. Assessors are not trained, qualified or equipped to judge a claimant’s decision regarding taking prescribed medicine.
The regulations say a claimant should be assessed as using an aid or appliance that can ‘reasonably be expected’ to be used, even if not normally used. The phrase ‘reasonably’ is concerning given that possession of a wheelchair is deemed ‘reasonable’ despite these not being routinely available from the NHS unless a person is unable even to walk within their own home. Assessors are not in a position to judge the suitability of an aid not used by a claimant, and are not well-informed of the availability of such aids.
Respondents to our survey felt it was inappropriate to assume someone has an aid that they can’t actually get (such as a wheelchair). Respondents indicated pain and permanent damage to their arm and shoulder from using walking stalks; several thought they had been denied ESA on this basis. One reported being denied ESA on the basis they could use a manual wheelchair; as their problem was fatigue (which affects arms as well as legs) this decision was over-turned at appeal. Others indicated using a wheelchair would be inappropriate as it is important for their health that they exercise and move around. It is concerning that these regulations combine with cuts to budgets that have resulted in fewer aids being available.
The regulations dictate an artificial split between mental and physical conditions. Respondents were very concerned by this, as their experience is that it is not possible to split the two; they interact and intertwine. Respondents explained how medicines they take for one condition can negatively impact another. ESA is supposed to consider function not diagnosis; if someone moves slowly, the reason why shouldn’t matter.
These regulations, as with mandatory reconsideration and time limiting, were viewed by respondents as a deliberate attempt to find ways to deny ESA to people who need it.
ESA is not well implemented.
Atos reports are often inaccurate, including omitting relevant information, recording as true statements that are opposite to the fact, making inappropriate and inaccurate inferences, and ignoring submitted medical evidence.14 The majority of successful appeals are over-turned on new ORAL evidence15 – this should have been elicited and recorded by the assessor.
Atos reports are variable depending on the assessor.7 The implication is that higher or more relevantly trained assessors identify more of a claimant’s difficulties with work. This is supported by the government’s recent Evidence Based Review, where specialists in a relevant health condition identified more difficulties with work than did Atos assessors or expert (but not specialist) panels.16
Decisions are known to vary between individual decision makers and between benefit centres.7 Professor Harrington recommended that Decision Makers be more ‘empowered.’ Despite initial improvements, empowerment and autonomy has since been lost.17
Many people experience substantial delays in their ESA claim, although not everyone does. Delays include material lost by the DWP, lengthy waits of many months for assessment and waits of over a year for an appeal. Respondents indicated that the consequences of this included stress, worsened mental and physical health, and financial difficulty including debt. In many cases a favourable outcome at appeal and back-payment was insufficient to restore health and remove debt even many months later.
Mandatory Reconsideration
Time Limit
“[My husband] should have appealed but we could not afford to do (I was on mid-rate care then) and was unaware ESA was only to be paid just for 365 days. So yes this Feb we got a letter to say money had stopped with no warning what so ever! We are not entitled to income related ESA nor any council tax reduction... In the meantime my husband is now forced on to Carers Allowance for me (age58). He cannot push my wheelchair for a day out. So he has no good income in his own right just carers allowance and I’m terrified of going into hospital for over 4 weeks because I lose all DLA and he loses cares (we need it)....yep you will know that calculation.....a lot of money lost.”
Living on a knife edge
The main theme in all the responses – regardless of the specific question – was stress. This came from financial insecurity, the difficulties of assessments and appeals, long and uncertain waiting times, risk of being unfairly assessed or found fit for work, the requirements of the Work Programme and sanctions for not carrying out activities one is unable for health reasons to do, and a pervasive feeling that the government’s intention is to deny ESA in any way it can. ESA's design and implementation can worsen physical health, worsen or initiate mental health problems, and push people into debt. Even when Support Group is awarded, the ‘revolving door’ remains (most people appear unaware that the government has halted reassessments for two years); and the debt and worsened health remain. The consequences of ESA are not just limited to the present experience; they are long-lasting, durable and profoundly negative. The net impact of stress and deterioration in health is moving claimants further away from work.
Simon has mental health issues and lost his appeal for ESA last October. Since then he has been surviving on his DLA as he can't face starting a new ESA claim. His friends hope that with help from HA Welfare Rights Advisors he might find strength to go through it all again.
It is difficult to get across this fear without reading all the comments. To send them to you would breach confidentiality, as well as the 3000 word limit. It is best described in the words of one of this report’s authors, upon reading some of the comments:
“And it’s the constant fear that gets mentioned - fear of not being believed, fear of the next assessment, the revolving door of fear- fear of the subsequent poverty every time it’s wrong. No one is relaxed on ESA - its constant fear. It terrorises me, it caused me to have a huge breakdown - massive, massive melt down - and that was a year BEFORE I was migrated. If it does that to me, what is it doing to those who don’t have my understanding of the system?
If we are going to say anything then we really need to indicate that this system is making people live on a knife edge, and there is zero security and zero assurance that people will get the benefit. I am pretty sure that baiting and frightening a whole sector of society like this must be infringing on a person's human right to live peacefully.”
Suicide was a repeated theme. Respondents indicated that this was the only option left given the lack of hope in a system that condemns them to poverty and ill-health. These were not idle words; a not insubstantial number of respondents had attempted suicide, knew someone who had died through suicide, and/or had planned to end their lives at their next assessment or if found fit for work. Suicide is a serious issues and its repeated occurrence as a theme even in seemingly unrelated questions indicates the depth of distress this claimant group is experiencing.
21 March 2014