Migration to ESA

ESA 15

Written evidence submitted by NAT

Summary

NAT is the UK's leading charity dedicated to transforming society's response to HIV. We provide fresh thinking, expert advice and practical resources. We campaign for change.

NAT is a member of the Disability Benefits Consortium (DBC), the national coalition of over 40 different charities and other organisations committed to working towards a fair benefits system

This submission is also supported by George House Trust, the largest HIV Social Care Charity in the North West of England.

We would like to submit evidence on the following aspects of the migration from Incapacity Benefit to Employment and Support Allowance:

· The Work Capability Assessment (WCA) does not adequately assess the physical and mental health barriers to work experienced by people living with HIV. Those who carry out the WCA have poor knowledge of HIV, leading to inaccurate decisions.

· Decision-making on ESA claims almost exclusively follows the recommendations of the Atos healthcare professionals (HCP), and disregards the medical evidence provided by specialist HIV clinicians.

· Appeals for ESA claims still have a high success rate, and this is especially the case when people living with HIV have expert advice and support. However, the scale of the migration and cuts to advice services will mean than not everyone will be able to access this support in future.

· The outcome of the migration for Incapacity Benefit claimants living with HIV will in many cases be poverty: either because they are found ‘fit for work’ and without access to further benefits; or because they lose access to contributory ESA (work related activity group) if they fail to find work within twelve months.

The Work Capability Assessment

1. NAT supports the principle behind the Employment and Support Allowance (ESA), to provide support for those who are not able to do any work, while providing extra support to those who may be able to work in future, if given the right help. However, the Work Capability Assessment (WCA) is failing to correctly identify among people living with HIV those who :

· are ‘fit for work’ (not entitled to ESA)

· have ‘limited capability for work’ (work-related activity group- WRAG)

· have ‘limited capability for work-related activity’ (support group)

2. In 2010 NAT carried out a review of the experiences of people living with HIV of the Work Capability Assessment (WCA). [1] We found that the WCA does not take into consideration the main barriers to work experienced by people living with HIV. The result has been that individuals with serious physical and mental health problems are found ‘fit for work’.

The assessment criteria

3. There are no opportunities during the WCA to provide information on key HIV clinical markers, such as CD4 count. Although these markers do not measure the full experience of living with HIV, they can be important indicators of poor health and immune deficiency, which should indicate to a decision-maker that the claimant has limited capability for work (or work-related activity).

4. NAT is aware of cases where people living with HIV who have CD4 counts below 50 (an indicator of serious ill health), who were also suffering from opportunistic infections and illnesses, have scored no points on the WCA. These cases tend to win at appeal, on the basis of ‘special circumstances’ rules which had not been considered by either the Atos assessor or the DWP decision-maker during the assessment process.

5. The WCA is also poor at assessing the impact of fluctuating symptoms. As a long term condition affecting many aspects of physical and mental health, HIV is characterised by the presence of multiple and often fluctuating symptoms. A survey by NAT of 265 people living with HIV found that the main fluctuating symptoms experienced by people living with HIV are fatigue (57%); depression and/or anxiety (55%), gastro-intestinal problems (48%) and neuropathy (nerve pain) (33%). [2]

6. When introducing the WCA, the DWP expressed concern that the previous assessment for incapacity benefit had allowed for some "double-counting", where multiple descriptors appeared to measure the same activity (in particular some around mental health). [3] But the points system introduced in response through the WCA has an opposite problem: it is possible to be considered to have real problems with two completely distinct types of activity and still not pass the WCA.

7. For example, someone living with HIV may have a combination of serious side-effects related to their essential (life preserving) HIV medication. As shown in the survey responses, diarrhoea is one common side effect (and currently the only of the main fluctuating symptoms to be at all considered by the WCA). They may also experience pain while walking, because lipodystrophy (redistribution of fat deposits, associated with some HIV drugs) has left their feet without natural padding. In this situation, they would score the following under the WCA:

Risks losing control of bowels or bladder so that the claimant cannot control the full evacuation of the bowel or the full voiding of the bladder if not able to reach a toilet quickly- 6 points

Cannot walk more than 200 metres on level ground without stopping or severe discomfort- 6 points

As they have only scored 12 points, the claimant would be found ‘fit for work’, despite having two significant health-related barriers to work. In this example, the two impairments have the potential to interact directly so that one exacerbates the impact of the other. It should be kept in mind that the individual may also experience additional symptoms not currently captured by the WCA, such as fatigue or nerve pain.

The service provided by Atos staff

8. NAT has had numerous reports from welfare rights advisers and their clients of poor knowledge of HIV among Atos staff, who ignore the medical evidence provided by HIV clinicians because they do not understand the relevance.

9. All HCPs undertake training which includes a module on HIV and have access to reference material on HIV. However, NAT has seen these training materials and it is clear that these have not been prepared specifically for use in the WCA process. The majority of the information concerns diagnosis, prognosis and prescribing treatment for patients with HIV in clinical care settings, which is not relevant to the WCA. HCPs receive no information on HIV and work in the UK context, or the most common HIV-related barriers to work. Atos has so far refused offers from leading HIV organisations to provide advice to improve these materials.

10. In one illustration of the significant knowledge gap among HCPs, an HIV-specialist benefits adviser took a case to appeal, in which the claimant’s side-effects from HIV treatment were a key source of difficulty in finding or staying in work.

The HCP present at the hearing responded that, as the claimant’s CD4 count was at an acceptable level, "why don’t they just stop taking [the medication] [4] ?" The claimant’s HIV-specialist benefits adviser tried to explain the serious health consequences of interrupting treatment, which would include a decline in CD4 count, but the judge told her to "please be quiet." As the HCP was a doctor, the judge took his opinion over that of the benefits adviser.

11. NAT is aware that people living with HIV are not alone in experiencing an attitude of disbelief from Atos HCPs. However, this is particularly distressing for people living with HIV, many of whom will have had bad experiences discussing their HIV in other settings. HIV remains a stigmatised condition in the UK. For a claimant living with HIV, who may be trying to explain issues relating to their mental health, or side-effects of their treatment, a dismissive attitude is likely to make them disengage with the benefit assessment process, including the pursuit of their right to an explanation or appeal of any decision.

12. Welfare rights advisers and organisations who support people living with HIV report that the stress associated with the WCA process can have a real impact on the health of someone living with HIV:

"The introduction of ESA and the push for people in receipt of sickness benefits to return to work means that we are increasingly receiving calls from clients who are worried about their entitlement and are feeling anxious that they will be asked to return to work when they are not ready - for instance because their condition varies so much and/or they have not worked for some time. We should not underestimate the effect this has on HIV positive claimants’ ability to cope with their medication, and their general wellbeing.’

- HIV-specialist benefits adviser, London

Recommendations

13. People living with HIV going through the WCA should be asked relevant questions about their health including CD4 count or other indicators of immune function; any side-effects of treatment they may experience; and if they experience fluctuating symptoms such as fatigue, pain and gastro-intestinal problems.

14. The Committee should seek clarification on why DWP and Atos have so far refused to improve the HIV training provided to staff and contractors.

Decision-making

15. According to DWP's guide on the WCA, the decision maker will "carefully consider all the evidence", including "the completed customer questionnaire, the information provided by their doctor and the advice of the approved healthcare professional". [5] However, despite the weight of knowledge and experience clearly lying with the specialist clinician who is expert in the condition, the weight of evidence in the decision comes from the generalist HCP, who may have absolutely no specialist training in the condition.

16. At present, the interpretation of evidence provided to an ESA claim is extremely narrow. Evidence from doctors is discounted because it does not explicitly and directly address one of the activities covered by the WCA descriptors. In one case a psychiatrist had to make multiple representations about a patient’s Post Traumatic Stress Disorder before it was finally accepted at appeal as evidence of incapacity for work.

17. The most recent ESA statistics show that only 3% of claims found eligible for WRAG were ‘reconsiderations’ – cases where the Decision Maker had decided against the Atos recommendation, or had requested a re-assessment by Atos. [6]

18. NAT supports Professor Harrington’s recommendation of the first Independent (Harrington) Review, that the DWP must focus on "Empowering and investing in Decision Makers so that they are able to take the right decision, can gather and use additional information appropriately and speak to claimants to explain their decision".

Recommendations

19. The Committee should seek clarification on the progress of the implementation of the recommendations of the Independent Review of the WCA by the DWP, including Professor Harrington’s recommendations on decision-making.

Appeals

20. There is a fairly consistent 40% success rate for ESA appellants overall. [7] It is also clear that claimants who receive help with and representation at their appeal from a welfare rights adviser do even better- one London HIV organisation has a 100% success rate at appeals.

21. However, with the greater volume of claims expected due to the migration, there will not be the capacity for HIV benefits specialists to support everyone who has an unfair claim through the appeals process. Many HIV organisations also face a loss of funding from social care and local authorities. In addition, the loss of Legal Aid funding for welfare advice will seriously reduce access to information and support from expert organisations like Citizens Advice Bureau.


Outcomes of migration

Those found eligible for ESA - WRAG

22. NAT strongly opposes proposals in the Welfare Reform Bill to limit contributory ESA to 12 months for those in the WRAG. The loss of the key out of work benefit (a loss of £91 per week) at an arbitrary point will exacerbate the existing high levels of poverty among people living with HIV. Between 2006 and 2009, one in six people currently accessing HIV had to access emergency cash support from one national charity (the Crusaid Hardship Fund) to pay for essentials. Living in poverty seriously compromises the ability of people living with HIV to meet their health-related needs. This includes the very basics such as travelling to medical appointments, heating their home to prevent respiratory infection, and regularly eating nutritious food to ensure the success of their treatment regime.

23. Physical and mental health problems related to HIV do not come with a time limit. As already illustrated above, claimants must show substantial physical or mental impairment before they are found eligible for ESA in the WRAG.

24. In addition, HIV remains a stigmatised condition in the UK, so people living with HIV still face social, as well as health-related, barriers to work. Research shows that unemployment among people living with HIV may be as high as 50%. [8] One in five people living with HIV who are in work have experienced discrimination in either their previous or current job. [9]

Those found ‘fit for work’

25. NAT is extremely concerned that some people living with HIV who are found ‘fit for work’ and are also found to not be entitled to further benefits will be left in poverty (see comments above),

26. NAT is also concerned that those Incapacity Benefit claimants who are found ‘fit for work’ and then move onto Jobseeker’s Allowance will not receive the support they need to move into work. The need for extra support is a common theme among people living with HIV who wish to work, but aren’t quite fully job-ready at present. For example, one survey respondent said that he needed "some support to work", because "although I have applied for jobs I never get interviews. I have ongoing memory and concentration problems and would need help with this."

27. For people living with HIV, stigma is still a day-to-day issue, and while many employers are proactive in creating a stigma-free workplace, this is not the case for all. And while it is unlawful to discriminate against someone in recruitment or the workplace on the basis of their HIV, they can still face more subtle barriers - those based on informal and unspoken expectations about employee behaviour, flexibility and attendance (including sick leave). People living with HIV may also face real barriers of confidence and self-esteem due to past experiences, or fear of stigma in the future. These barriers can be overcome with specialised support and help, but such support will not be available to the Incapacity Benefit claimants who are found ineligible for ESA.

National roll-out and timeline of the migration

28. NAT welcomes the ongoing reforms recommended by Professor Harrington in his first year review of the WCA, the Government endorsement of these recommendations, and the programme of work Professor Harrington has already outlined for the second year. However, we question the decision to go ahead with the national roll-out of the migration while these Harrington reforms are still being implemented, and further recommendations are yet to be made.

29. We are particularly concerned by the Government’s decision to implement the recommendations of the Internal Review of the WCA, which were consistently and strongly rejected by disability organisations, including those who had been consulted in the review process. The new ESA Regulations, which will bring in the changes to the WCA as recommended by the Internal Review, require a major change to the assessment process at the same time as the migration will be rolled out.

30. The introduction of the new ESA Regulations will be costly for DWP, and may lead to claims of unfair assessments, as ESA claimants will be subject to different rules depending on when they are assessed. In addition, the changes are likely to be superseded in the near future when the recommendations of Professor Harrington’s second year review are implemented – these will included proposed changes to better reflect mental health and fluctuating conditions in the WCA. For these reasons, disability organisations, including NAT, have repeatedly called for an annulment of these Regulations (please see Appendix for previously published briefing).

Recommendations

31. The Committee should seek information from the Department for Work and Pensions on how Jobcentre Plus offices will be prepared to meet the needs of disabled people who are moved to Jobseekers Allowance following the migration, including:

· S taff training in the s ocial dimensions of disability and the sensitivities associated wit h stigmatised conditions like HIV.

· Staff training in equalities legislation, especially those aspects of the Equality Act 2010 relating to the rights of disabled people in recruitment and employment

· Resources to provide disabled people with the extra support and training they may need to overcome barriers to work.

32. The Committee should seek clarification on the following aspects of the provision to time-limit contributory-based ESA (WRAG) to 12 months:

· What will happen to claimants who reach the 12 month limit of contributory ESA (work-related activity group) but do not qualify for means-tested ESA?

· What evidence did the Government use to decide upon the 12 month limit for ESA?

· Has the Government considered the additional difficulties faced by people with stigmatised conditions such as HIV, in trying to find work within 12 months?

33. The Employment and Support Allowance (Work-Related Activity, Action Plans and Directions) Regulations 2011 should be annulled. Any changes to the WCA should be left until the second year Independent Review of the WCA reports.

April 2011
Appendix: Previously published briefing

The Employment and Support Allowance (Limited Capability for Work and Limited Capability for Work-Related Activity) (Amendment) Regulations 2011

(S.I. 2011 No.228)

The Disability Benefits Consortium [1] (DBC) is a national coalition of over 40 different charities and other organisations committed to working towards a fair benefits system. Using our combined knowledge, experience and direct contact with disabled individuals and carers, we seek to ensure Government policy reflects and meets the needs of all disabled people.

Background

The Work Capability Assessment (WCA) is the test used to determine eligibility for Employment and Support Allowance (ESA) and operates using a set of descriptors. Each descriptor has a number of points attached to it and if an individual scores 15 points either across a range of descriptors or on a single descriptor they qualify for ESA. Following an internal review carried out in 2009/2010 the Department for Work and Pensions (DWP) plans on introducing changes to these descriptors that will tighten the criteria for ESA. We are concerned that this review was carried out too early in the life of ESA to be based on meaningful evidence, that the revised descriptors fail to meet the aims of ESA and that these changes are premature as further revisions to the descriptors are expected following the more comprehensive annual reviews commissioned by the DWP.

We are therefore asking that these regulations (S.I. 228) be annulled.

Compliance with the Welfare Reform Act 2007

The test for ESA is meant to identify "whether a person’s capability for work is limited by his physical or mental condition" (Welfare Reform Act 2007, 8.1). However, the new descriptors will in practice identify only those individuals incapable of any work, not those with a limited capability.

Internal review

The internal review that produced these revised descriptors was based on very limited evidence and failed to consult widely. Whilst DBC members were involved in the review they were concerned about the thoroughness of the review and clearly stated that they did not support its findings.

Restricting access to ESA

The internal review of the WCA was announced in July 2008, [10] three months prior to the introduction of ESA itself and with the express purpose of reducing access to the benefit. [11] Despite the high than anticipated numbers of people being found "fit for work" (70% compared to the predicted 51%) the revised descriptors proposed by the review will reduce access by a further 5%.

Social Security Advisory Committee

The Social Security Advisory Committee (SSAC) received over 160 responses to their consultation on the revised descriptors and has recommended that "the Department does not proceed with the remaining proposed changes to the descriptors until these have been reconsidered in the light of the findings of the independent review of the WCA and the experience of the trial of the migration of IB customers to ESA".

Further revision of WCA descriptors – Independent WCA Review

As part of the DWP commissioned independent review, work is currently being undertaken to revise descriptors to take better account of non-physical impairments and fluctuating conditions. If further changes are then made to the WCA this would lead to confusion amongst staff delivering the benefit and an unequal system with eligibility varying according to when people applied.

Chemotherapy

The regulations will improve the WCA for those waiting for, or between courses of, chemotherapy and we would welcome separate regulations to introduce these much needed amendments.

Impact of proposed descriptors

Below are some examples of the impact of the proposed new descriptors:

· An individual who "cannot mount or descend two steps even with the support of a handrail" could now be classed "fit for work".

· Someone unable to stand at a workstation for more than ten minutes could now be deemed "fit for work".

· The descriptors for turning star headed sink tap have been removed, consequently there is no functional assessment for the ability to turn or rotate the hand despite this representing a form of manual dexterity vital in many workplaces.

· Three different categories of descriptors looking at motivation, concentration and reasonable time to complete an action have been collapsed into one single descriptor, meaning significant areas of function are excluded from the new assessment, for example, although depression is just one impairment, it may affect functioning in multiple areas of a person’s life and the WCA needs to reflect this.

· The ability to get about and cope with change will no longer be assessed in terms of frequency, which will impact negatively on people with variable or fluctuating conditions.

· The changes remove all lower-level descriptors in some categories, for example, there are now no six point descriptors within manual dexterity, making it hard for people with multiple impairments to qualify.


[1] NAT. 2010. Unseen disabilities, unmet needs . http://www.nat.org.uk/Media%20library/Files/Policy/2010/NAT_Unseen_disability_unmet_needs_reviewofWCA.pdf

[2] NAT survey ‘HIV-related symptoms’, 2011. 265 participants living with HIV. Report forthcoming.

[3] “Transformation of the Personal Capability Assessment”. Technical Working Group’s Phase 2 Evaluation Report. November 2007. http://www.dwp.gov.uk/docs/tpca-1.pdf

[4] Strict adherence to anti-retroviral treatment is absolutely essential to successful HIV treatment. As well as negatively affecting the health of the individual, poor adherence to treatment can lead to the development of drug resistance, which has serious public health consequences.

[5] DWP. (2008). ' A guide to Employment and Support Allowance- The Work Capability Assessment'. ESA214. p15

[6] DWP. "Employment and Support Allowance: Work Capability Assessment by Health Condition and Functional Impairment". January 2011.

[7] Ibid.

[8] Over 50% unemployment in a study of people living with HIV in East London . Ibrahim, F et al (2008). "Social and economic hardship among people living with HIV in London ". HIV Medicine .; 38% of 250 respondents in a recent NAT online survey of people living with HIV (report forthcoming).

[9] NAT. 2009. Working with HIV. http://www.nat.org.uk/Media%20library/Files/Policy/Our%20thinking/Employment%20summary%20report%20-%20FINAL%20August%202009.pdf

[1] DBC members: Action for Blind People, Action for M.E., Age UK, Arthritis Care, Breast Cancer Care, Carers UK, Child Poverty Action Group, Citizens Advice, Clic Sargent, Cystic Fibrosis Trust, Deafbrind UK, Disability Alliance, Every Disabled Child Matters, Guide Dogs, Haemophilia Society LASA, Leaning Disability Coalition, Leonard Cheshire Disability, Macmillan Cancer Support, Mencap, Meningitis Research Foundation, Mind, Motor Neurone Disease (MND) Association, MS Society, Muscular Dystrophy Campaign, National Aids Trust, National Autistic Society (NAS), National Deaf Children’s Society, Parkinson’s UK, Rethink, Royal Association for Disability Rights (RADAR), Royal National Institute for the Deaf (RNID), Royal National Institute of Blind People (RNIB), RSI Action, Scope, Sense, Skill, Sue Ryder, TUC, United Response, Vitalise.

[10] Department for Work and Pensions (2008) “No one written off”

[11] Ibid: 3.11 …. We expect that, following the planned review, the proportion of ESA claimants who will be assessed as able to look for a wide range of jobs straight away and eligible for JSA by the time they complete the WCA at around the three-month point, will rise by around 10 percentage points.

[11]