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 12 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); and
— 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:
— Staff
training in the social dimensions of disability and the sensitivities
associated with 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
1 NAT. 2010. Unseen disabilities, unmet needs.
http://www.nat.org.uk/Media%20library/Files/Policy/2010/NAT_Unseen_disability_unmet_needs_reviewofWCA.pdf
Back
2
NAT survey "HIV-related symptoms", 2011. 265 participants
living with HIV. Report forthcoming. Back
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 Back
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. Back
5
DWP. (2008). " A guide to Employment and Support Allowance-
The Work Capability Assessment". ESA214. p15 Back
6
DWP. "Employment and Support Allowance: Work Capability Assessment
by Health Condition and Functional Impairment". January 2011.
Back
7
Ibid. Back
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). Back
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 Back
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