HIV and Sickness Benefits

posted: 03/05/2011

Before the May Day holidays the Department of Work and Pensions got a lot of press coverage by claiming that its reforms of sickness benefits were working. It claimed three quarters of the people applying for the new Employment and Support Allowance (ESA) are either fit for work or stop their claim before they’ve had the medical assessment. They claimed this proved the need to urgently reform benefits, and that Ministers are right to reassess everyone on incapacity benefit.

Don't give up on benefits with HIV

People living with HIV who are claiming benefits for sickness – either Employment Support Allowance or Incapacity Benefit - should not feel intimidated. Benefit experts and the National AIDS Trust point out that the system isn’t working properly for people with HIV. But people with HIV very often win if they don’t give up, stick with their claims and get expert help. Very many people with HIV win if they appeal.

False logic

The Department of Work and Pensions is wrong to claim that lots of refused claims and high rates of drop outs from medicals prove the new system of ‘Work Capability Assessments’ is working. For people with HIV these show the system is seriously failing. People with HIV can and do win with help.


HIV and long term conditions

Research by NAT shows that people living with HIV are being found ‘fit for work’ despite medical evidence showing a range of serious physical and mental health problems. These include severe immune deficiency, co-infection with pneumonia or TB, fatigue, depression and debilitating side-effects from essential HIV treatment.

Deborah Jack, Chief Executive of NAT (National AIDS Trust), commented:

‘The refusal of 39% of ESA claims is not conclusive evidence that Work Capability Assessment (WCA) is effective. These claimants may be found ‘fit for work’ under the rules of WCA, but many face very real health-related barriers to work which have been overlooked during the assessment process.

NAT is also extremely concerned by the high drop-out rate of 36% before a decision on the benefits is made. Dropping a claim does not prove someone is not eligibile for Employment Support Allowance. NAT continued ‘An independent review of the Work Capability Assessment revealed serious problems with decision-making and administration, and real failures in the way the DWP communicated with claimants. Stopping a claim halfway, points towards fundamental flaws in the system – which are yet to be resolved.’

More information

If you live in NW England with HIV and and have problems with benefits please contact our support team

DWP statistics can be found here

NAT’s report ‘Unseen disability, Unmet needs - A review of the impact of Work Capability Assessment on people living with HIV’ 

The Work Capability Assessment (WCA) is the test undertaken to determine whether a person is eligible for Employment and Support Allowance (ESA). The WCA aims to identify claimants who have ‘limited capacity for work’ or ‘limited capacity for work-related activity’, so that they may receive the right support to help them live well and (where appropriate) return to work. Those who are found ‘fit for work’ are not entitled to receive ESA. The test contains a series of questions, called ‘descriptors’, which relate to physical and mental functions, and from which claimants score points.

The report of the Independent Review of the Work Capability Assessment

In October 2008, Employment and Support Allowance (ESA) was introduced to replace Incapacity Benefit and Incapacity-based Income Support as the primary income support benefit for people who are unable to work due to disability or illness.
 

Join HIV and Benefits Survey

posted: 16/02/2011

Lots of changes (including cuts) will be happening to the welfare benefits used by many people with HIV in the coming months and years. We need evidence now about how the changing nature of HIV affects people’s ability to do a paid job.
 

Would you please help our friends at NAT (National AIDS Trust) by answering their short (10 question) online survey about HIV-related symptoms of people living with HIV.

Please Take part in the quick survey, here

NAT are part of a national benefits working party trying to improve the Work Capability Assessment (which is used to help decide claims for Employment Support Allowance - the new benefit for sickness and disability).

The Work Capability Assessment fails many people with HIV – it doesn’t cope well where symptoms can come and go, like with HIV. Your answers will help us and NAT make it work better for people with HIV.
 

Be a big help for many

Your answers will help make a major difference to many people – everyone now receiving Incapacity Benefit will have to have their own Work Capability Assessment within the next 2-3 years. Many people are having to appeal bad decisions about this and 40% of the people who appeal refusals of these claims win.

The findings of this research will help NAT speak for the needs of people living with HIV who apply for illness and disability-related benefits. In particular, it will lead to recommendations to the second annual independent review of the Work Capability Assessment.

NAT will be on the working group which will recommend changes to the Work Capability Assessment (WCA) to more accurately and fairly assess people with fluctuating conditions, such as HIV.

Anything you can add?

NAT welcome other evidence about the impact of fluctuating symptoms on the lives of people living with HIV, and particularly want to hear the experiences of people who have HIV-related symptoms who have gone through the Work Capability Assessment.

For more information about the survey or the working group, or to send case studies and other evidence, please contact Sarah Radcliffe

Please Take part in the quick survey, here

Better Benefit ‘Work’ Tests

posted: 24/11/2010

The government has said it will overhaul its controversial medical tests to decide whether the seriously ill and disabled can claim long-term sickness benefits. An independent review found they were "impersonal, mechanistic and lacked empathy", leaving many claimants feeling unjustly treated and distressed.
 

The review, conducted by the academic Malcolm Harrington, an occupational health specialist, looked at whether the 'working capability assessment' was a fair system. There is mounting evidence that people with serious illnesses, like HIV, are being judged fit for work, when they are not. 40% of people who appeal, win their appeals.
 

Testing 94,000 people a month
The tests, first introduced in October 2008, mean 53,000 people are assessed a month for 'employment and support allowance'. The numbers being tested will balloon from next April as another 41,000 incapacity benefit recipients are re-assessed under the ‘work capability assessment’ every month.
 

Long-term ill and disabled somehow pass ‘work’ tests
Harrington found that the assessments, run by a French multinational, Atos Origin, which received £54m from the coalition government for the contract, failed people with mental illnesses and long-term disabilities.
 

‘Impossible’ 28 page form
One form which claimants needed to complete is 28 pages long and almost half the people "found the questionnaire difficult or impossible to complete".
 

Another problem is that people’s ability to work is measured by a computer questionnaire that uses "descriptors" - questions that are apparently unrelated to work. One example is that people are asked whether they had "loaded a dishwasher or washing machine" that day. "It does not bother to ask whether the claimant has a dishwasher or washing machine. That is the danger with computer systems and drop-down menus," said Harrington.
 

Another question asks if you sit and watch TV. Say yes and they assume you can sit for long periods in a chair.
 

"We want to rely much more on healthcare professionals and assessments., said Harrison..

He pointed out that 40% of those found fit for work by the system appealed and won – and added that most people who appealed provided "additional medical information".
 

Radical change needed
Harrington called for a radical overhaul, with jobcentre staff having to take into account health records, the Atos assessments and an individual's own testimony before making a decision about whether someone on sickness benefits should be forced back into work.
 

At present benefits staff rarely dissented from Atos's verdict, he said, and "a lack of procedural justice can lead people to feel embittered and for some this can lead to psychological distress with affects on physical and mental health".
 

Champions to help
The report also recommends the appointment of lay "champions" to guide claimants through the process, and detailed explanations of why a benefit has been refused.
 

Welcome for review
Many working with the poor and vulnerable welcomed the report, saying it was a long overdue recognition of the system's problems. Citizens Advice said its surveys showed a 41% increase in complaints from claimants in the past year alone.

NAT, National AIDS Trust welcomed the findings and recommendations. They say ‘we fully support the call for change to ‘improve the fairness and effectiveness of the WCA’ by improving transparency, empathy and communication within the assessment process for Employment Support Allowance (ESA)’. NAT were among the 400 organisations and individuals to contribute to the independent review, based on their research report Unseen disability, Unmet needs – A review of the impact of Work Capability Assessment on people living with HIV. Deborah Jack, Chief Executive of NAT (National AIDS Trust), said: ‘NAT supports the recommendations of the independent review and we were extremely pleased to see some of our concerns included in the final report.

Government to make all the changes

The government said it accepted Harrington's conclusions and would implement them in full. The work and pensions minister Chris Grayling said: "There were no targets or goals to get people off benefits. This is meant to be a fair process … we are dealing with claimants who we have had very little contact with."
 

Reform delay criticised

However, Harrington did criticise the government for failing to implement a key recommendation quickly enough: that of a "personalised summary of assessments in plain English" to be produced by Atos. The government could only promise that ministers "explored the feasibility of providing a summary" by the end of 2011. Given the planned expansion in the scheme next year, Harrington said, this "was just not good enough".
 

Charities said the "review pinpoints what is wrong with the system". Matthew Lester of the Papworth Trust, a disability charity, said the main concern now was how quickly the government would implement the report's main findings. "Even if they get the main points implemented by April that will mean another 250,000 people being assessed by a system that we already know is unfair."

NAT report

Source (adapted)

Failed Work Capability Assessments

posted: 28/10/2010

Tests for the new sickness and incapacity benefit called Employment Support Allowance are wrongly failing people with HIV. The tests, called the Work Capability Assessments, fail to recognise that HIV can prevent and limited people from working, says new research by NAT (National AIDS Trust).

Appeal - 40% Win

The Department of Work and Pensions has revealed that almost 40% of the people who appeal these decisions win. That is a dreadful rate of expensive administrative failure.

NAT’s report Unseen disability, Unmet needs – A review of the impact of Work Capability Assessment on people living with HIV sets out the problems. These start with the design of the assessment test and how it is used in practice.

• For example, the test does not properly allow for illnesses and conditions where symptoms come and go, where fatigue, side-effects of HIV treatment and depression affect our ability to work.
• People going through the medical examination may not have the chance to talk about how HIV affects their physical and mental health in ways that limit the ability to work.
• NAT‘s research finds that continuing ignorance about HIV among the medical assessors and decision makers drastically reduces the likelihood of a fair and accurate assessment and decision about people with HIV’s ability to work and need for sickness and disability-related benefits.

Deborah Jack, Chief Executive of NAT, says:

‘HIV is a disability, and like many other disabilities, people living with HIV can have vastly varying experiences relating to their condition. Whilst some find they can still work, many others find the impact of HIV or their treatment means employment is not an option at the moment and they need to claim disability related benefits.

‘As it currently stands, the WCA is based on an outdated model of disability which only recognises a narrow medically defined set of physical and mental impairments. Also, it does not appropriately acknowledge the fluctuating nature of the condition and the impact that low self esteem due to HIV related stigma can have on a person’s ability to work.

‘NAT has submitted our ongoing concerns to the Independent Review of WCA, lead by Professor Malcolm Harrington, and hopes these will fully considered before any new rules are finalised and come into effect.’

Key findings

• The test ignores key HIV clinical markers, such as CD4 count, in the medical assessment
• WCA decision makers often pay more attention to the company contracted to do the medical assessment than to the person’s own HIV clinician and GP, who know the patient and their needs much better
• A wide range of problems with administration and communication of the tests harm the health and well-being of people with HIV through stress, delays and pressure.

Tim’s tale

Tim is a young man who applied for Employment and Support Allowance (ESA) with the help of his aunt and an HIV specialist benefits adviser. At the time of completing his ESA50 form, Tim’s CD4 count was 19. Medical evidence from his doctor explained that at the time of diagnosis, Tim had a CD4 count of 0 and PCP, a form of pneumonia associated with a low CD4 count.

Despite providing information about his blood test results, these were not discussed during the medical examination. The record of the examination contradicted itself by saying that Tim experienced ‘no side-effects’ but then noted that he had diarrhoea as a side effect of his medication. He was not given any points for his incontinence.

Tim was found fit for work. His doctor submitted further medical evidence but the case still ended up at appeal. Tim’s adviser said that, “on the day, we won that appeal, without me having to say a word or even sit down...The judge looked up and said, “oh – ESA successful, he’s in the support group, that’s not a problem”.’

Tim is now in the support group of ESA.

Grace's grievances

Grace had a CD4 count of 40 when she was refused ESA. She claimed Job Seeker’s Allowance and attended the jobcentre for help to find work, where she was placed in a job as a cleaner. Grace became sick after only a couple of hours work, owing to her compromised immune system. She was ill for a fortnight.

Her HIV-specialist benefits adviser said, ‘me and the social worker went ballistic at her when we found out [that Grace had gone to work] but she said “I wanted to try because I don’t want to claim”. We said “we know darling, but you’re too knackered, so don’t”.’

The adviser took Grace’s case to appeal, and was successful. Grace is now in the support group.

About the tests - the Work Capability Assessment (WCA)
The Work Capability Assessment (WCA) is the medical test used to decide whether a person is eligible for Employment and Support Allowance (ESA). The WCA aims to identify claimants who have ‘limited capacity for work’ or ‘limited capacity for work-related activity’, so that they may receive the right amount of financial and employment advice support to help them live and (where appropriate) return to work. Those who are found ‘fit for work’ are refused ESA. They can then appeal and claim Job Seekers Allowance instead. 40% of people who appeal WCA test decisions win their appeals.
The WCA test contains a series of questions, called ‘descriptors’, which relate to physical and mental functions, and each awards some points. You need to get enough points to get ESA.

The report

NAT’s report Unseen disability, Unmet needs – A review of the impact of Work Capability Assessment on people living with HIV

In October 2008, Employment and Support Allowance (ESA) started to replace Incapacity Benefit and Incapacity-based Income Support as the main benefit for people who are unable to work due to disability or illness. Everyone now on Incapacity Benefit will have to go through the new ESA WCA tests, starting in 2011.

George House Trust helped with this report.
 

Well Enough to Work?

posted: 23/03/2010

People with HIV are among those getting a raw deal in assessments carried out for Employment and Support Allowance (ESA). A report launched today by national charity Citizens Advice, and supported by eighteen other organisations including National Aids Trust, highlights grave concerns about how sick and disabled people are being assessed for Employment and Support Allowance (ESA).
 

ESA was introduced in October 2008 and it replaces incapacity benefit for new claimants. It aims to give more help to those who might, with support, be able to work. Everyone already on Incapacity Benefit will soon begin to be transferred to Employment and Support Allowance, using the assessment methods criticised in this report.
 

 2 out of 3 sick and disabled people told - ‘fit for work’
Since ESA was introduced, advisers across the country have been reporting high numbers of seriously ill and disabled people being found ‘fit for work’ under the new Work Capability Assessment (WCA). Two out of three people having this assessment are found ‘fit for work’.

Examples of people in this situation include people with late stage HIV, Parkinson’s Disease and Multiple Sclerosis, people with severe mental illness, and some who are dealing with acute short-term health problems, such as awaiting open heart surgery.
 

"People with serious illnesses and disabilities who could not reasonably be expected to work are being found fit for work," the report states. "Many of these people are too ill to sign on, or are not eligible for any other benefit, and so are left with reduced incomes and no help or support to find work." Sue Royston, the author of the study, said "This is a systemic problem. Advisers up and down the country are reporting that very seriously ill people are being found fit for work." 

Time for full review
Citizens Advice are calling for a full review, a rethink that would reassess who should be eligible for the benefit, and study the accuracy of the medical assessments.
 

Improvements planned
Responding to the report, the Department for Work and Pensions said the medical assessment system was being adapted and changes would soon be announced that would make it more sensitive to the needs of cancer sufferers, people with learning disabilities and autism, and those with fluctuating conditions (such as HIV).

Part of the problem is that the questions only allow yes and no answers so people can’t describe how their ill-health affects them, but must simply say yes or no to whether they can stand, or sit, or walk a certain distance. What do you say if you have some good days and some bad days, some days when you can, some days when you can't?

Mental ill-health, pain, exhaustion

The report also points out that the system pays little attention to the impact of mental ill-health on the ability to work, and warns that it does not properly recognise the effects of pain and exhaustion.
 

"Seriously ill and disabled people are being severely let down by the crude approach of the Work Capability Assessment. A much more sophisticated approach is needed, that not only looks at a person's ability to undertake a certain task on the day of the test, but considers supporting medical evidence and other aspects, such as the variability of a person's condition," David Harker, chief executive of Citizens Advice said. "We are very concerned about the 69 per cent of people assessed who are refused ESA."

Medicals are a one-size-fits-all production line
The report 'Not working - CAB evidence on the ESA Work Capability Assessment’ outlines the limited effectiveness of the assessment. Claimants undergo a medical test, which should assess what they can do, but the evidence shows that the test doesn’t deal with the complexities of many illnesses and disabilities.
 

Citizens Advice has numerous reports of hurried medicals, where medical examiners miss vital details,
make unjustifiable assumptions and don’t place enough emphasis on the impact of mental health issues on the ability to work.
 

Not working shows how failing the WCA can have an enormously detrimental effect. By being told they must find work, people face further hardship by either having to claim Job Seekers Allowance, which has strict rules and is less money, or, in many cases, no benefit at all.
 

The stress of having the assessment, and the prospect of fighting unfavourable decisions at a tribunal adds to the considerable pressure on people who are sick or disabled. The harm caused makes it even more likely vulnerable people will not be able to make a good return to working.
 

HIV and variable conditions
David Harker, Chief Executive at Citizens Advice said: “The current test to determine eligibility for ESA isn’t working. We are seeing cases where the Government’s aim of moving people into work is being totally undermined. Seriously ill and disabled people are being severely let down by the crude approach of the Work Capability Assessment. A much more sophisticated approach is needed, that not only looks at a person’s ability to undertake a certain task on the day of the test, but considers supporting medical evidence and other aspects, such as the variability of a person’s condition and the external barriers they face in finding work.
 

“We are very concerned about the 69 per cent of people assessed who are refused ESA. Some should never have been subjected to the work capability assessment, and we believe that if someone is seriously ill, more information should be gathered from their doctor before this decision is made. Undoubtedly, there are some people ready and able to go back to work at the time of their assessment, but our evidence shows that there are many more people who, by being moved off the benefit and away from any further support, are effectively being written off.” He concluded:
“Citizens Advice calls on the Government to address the problems outlined in the report, which are causing hardship to seriously ill people at a time when they most need support.”
 

HIV assessments
George House Trust, like other HIV organisations, have seen many bad examples. With Manchester Advice (who provide our expert benefits advice and represent people living with HIV at appeals) and with National AIDS Trust, and the help of people living with HIV, we are now gathering evidence about how these work capability assessments affect people with HIV. NAT plans to produce a report late this year and we will use the evidence to press for a better deal for people with HIV.
 

Citizens Advice press release
Citizens Advice report
More reporting