What's happening to benefits?

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
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At least 40% of people with HIV are jobless,1,2 especially those who are long-term diagnosed. Most of them will be on Incapacity Benefit or other state-provided financial assistance such as Disability Living Allowance. The government says it wants to cut the number of people on health-related benefits by a quarter, but in practice is cutting more. HTU looks at what is happening to disability benefits and what is planned.

The crackdown on Incapacity Benefit

It had already started way before the last election; the current huge changes and cuts in disability and illness benefits are not entirely the Cameron/Clegg government’s idea. In 2008, a report3 commissioned by the Department of Work and Pensions (DWP) said that 55% of the 4.7 million people of working age claiming a government benefit were doing so because they were sick or disabled, compared with 16% because they were unemployed.4  Lord Freud, now Minister for Welfare Reform, said that fewer than a third of people claiming Incapacity Benefit (IB) were literally incapable of work: the rest were either already fit for work or capable of being trained up for it.5

In October 2008 a new replacement for IB was introduced – Employment and Support Allowance (ESA). GP certification was replaced by a tough new medical assessment – the Work Capability Assessment (WCA) – conducted by independent healthcare professionals (HCPs) employed by a private company, Atos Origin, which is currently contracted to provide this service to the DWP until 2015 at a cost of £500 million, over seven years. DWP staff make the decision whether to award ESA but the opinion of the HCP is usually followed.

The emphasis of these assessments – 53,000 of them conducted per month – is on claimants’ capabilities, scored according to a rigid 15-point scale for each type of activity. Can they feed themselves? Walk? Control their bowels? Lift things? Initiate activities without prompting?



Tiredness, often severe (exhaustion).



In discussions of consent for medical treatment, the ability of a person to make a decision for themselves and understand its implications. Young children, people who are unconscious and some people with mental health problems may lack capacity. In the context of health services, the staff and resources that are available for patient care.

representative sample

Studies aim to give information that will be applicable to a large group of people (e.g. adults with diagnosed HIV in the UK). Because it is impractical to conduct a study with such a large group, only a sub-group (a sample) takes part in a study. This isn’t a problem as long as the characteristics of the sample are similar to those of the wider group (e.g. in terms of age, gender, CD4 count and years since diagnosis).


A mental health problem causing long-lasting low mood that interferes with everyday life.

haemoglobin (HB)

Red-coloured, oxygen-carrying chemical in red blood cells.

The results were dramatic. A year after its start,6two-thirds of new claimants applying for ESA were being initially turned down, despite the government predicting beforehand that the refusal rate would be 20 to 25%.7 A review conducted by occupational health expert Malcolm Harrington8 found that the WCA was hard to understand, inflexible and clumsy. The initial application form, ESA1, ran to 52 pages and many people found it “difficult or impossible to complete”. Forty per cent of claimants who appealed against a decision to refuse benefit were granted it. (The DWP has accepted Professor Harrington’s recommendations and will be conducting five further, in-depth reviews on the WCA.)

Nonetheless, and allowing for the fact that 36% who applied for ESA dropped their claim, even after appeal nearly 40% of those applying for ESA were deemed ‘fit for work’, and therefore weren’t eligible for any disability-related support in returning to work. Another 15% were placed in what is called the Work-Related Activity Group (WRAG) of recipients: this means that it was judged that with training and help they would be fit to work within a year. A mere 6% of applicants were placed in what is called the Support Group, meaning they were receiving ESA under similar conditions to the old IB. This compares with an 83% acceptance rate for IB.

The National AIDS Trust (NAT) published their own review of the experiences of ESA claimants with HIV.9 It found that the WCA had no allowance for key clinical indicators like CD4 count. It assumed that claimants’ level of health was constant; there was, and still is, no capacity within the system for assessing fluctuating conditions such as fatigue, pain, continence or depression.

NAT also found some criteria hard to understand. For instance, a primary mental health criterion specifies that claimants must have varying degrees of inability to “initiate or sustain any personal action…without requiring daily verbal prompting given by another person in the claimant’s presence”. This simply doesn’t cover many psychological conditions.

NAT found that the Department for Work and Pensions (DWP) gave more weight to the Atos HCPs than to expert opinion, despite many HCPs appearing to be ignorant of HIV issues: NAT provides one example of a claimant who, saying she had chronic diarrhoea due to HIV drug side-effects, was challenged both by the assessing HCP and by the tribunal judge as to why, with a CD4 count over 350, she couldn’t simply stop taking the pills.

It found that people were simply being deemed ‘fit for work’ instead of placed in the Work-Related Activity Group.

Sarah Radcliffe of NAT comments: “ESA could really benefit people living with HIV who want to...work, by providing individual support from a disability-specialist adviser. However, the assessment process sets the bar so high that many who would benefit the most are being found ‘fit for work’ and left to claim Jobseeker’s Allowance instead.”

Around the time ESA was implemented, the global and UK economies crashed, and the Conservative/Liberal Democrat coalition government is determined to use and extend the benefit changes now, to save money.

Spring 2011: migration time

If you’re already on Incapacity Benefit (IB), none of this may have affected you yet. Well, it’s about to: starting this April, and continuing till April 2014, people currently on IB will be assessed, using the same tests, to see if they are going to be ‘migrated’ to ESA. A lot of them are likely to lose this health-related benefit.

The most recent information, at time of going to press, is that the reassessment for ESA will start on 1 April 2011 and the government predicts that completing the process for all claimants will take at least five years.

If you are on IB and don’t want to be thrust unceremoniously into the labour market, at least without some help, how do you make the most of your looming medical assessment?

There is some good news. Lobbying by HIV organisations, including NAT, has persuaded the DWP to include fatigue amongst the symptoms it assesses, for instance. But they report less success in persuading the DWP to develop ways of assessing intermittent conditions. 

John O’Callaghan-Williamson is the founder of Thcell (www.tcell.org.uk), a grassroots HIV benefits and support website and blog, set up in January 2009 in the wake of a DLA review - due, he says, “to the fact there was no information readily accessible online”.

He says: “There needs to be a standard client information toolkit for people with HIV. This would include simple advice like ‘Complete your ESA50 forms [the questionnaire that forms part of the WCA] in pencil first, put them down for a few days, then review before completion’.

“Fluctuating conditions are going to be difficult to summarise on the form. I’d encourage people to complete either the ‘additional information section’ or submit additional pages (making sure you have your National Insurance number on all pages submitted), or ask if you can submit the relevant information in a different format [such as a comprehensive letter from your HIV consultant or, if you know them well, your GP] covering all the points the DWP needs.” 

He recommends avoiding online form submission and advises claimants to photocopy or scan all documents, to keep a diary of when forms need to be and were submitted, and to make notes of who they spoke to on the phone and when. In future, you will also be able to request that your Work Capability Assessment be recorded; this is being piloted at present.

Chris Morley is George House Trust’s HIV Policy, Information and Publications Co-ordinator. He says: “There are also reviews of decisions, a pre-appeal stage, and sometimes asking for a review by the DWP rather than immediately appealing the decision is tactically better.

“In terms of your medical assessment, a good half of people report little medical HIV awareness, competence or much interest from the Atos Origin HCPs, though others report they were well considered. Take a friend for moral support and to remind you of what you need to say; bring written proof of your CD4 and viral load and ask that this be considered. Always appeal with the help of a benefits adviser and start the appeal within the time limit.”

Above all, get help in at an early date, both from a benefits adviser and from your doctor. The requirements for medical evidence are both complex and specific and the best strategy is if you can get both professionals to collaborate, as your doctor will know how to describe symptoms accurately and a benefits adviser will know what the health assessors regard as relevant and irrelevant.

The benefits, and how the government wants to trim them

The government says that putting people on less generous benefits that are dependent on their showing willingness to work could save £3.4 billion.10 Add in proposed cuts of £1.8 billion to Housing Benefit, and we’re talking nearly half of the £11 billion the government wants to trim from the total benefit budget. Much of the other half will be saved by pinning pension and benefit increases to the consumer price index, which excludes mortgage and rental costs

Incapacity Benefit is intended to replace job income for people whose medical condition makes them unfit to work. It is paid at a rate of £91.40 a week for long-term claimants. Currently 2.6 million people of working age, or one in 15 of the total working-age population, claim IB: the largest group of economically inactive people, bar pensioners, in the population. This, along with ESA, costs £8.5 billion a year. The government wants to cut this budget by £2 billion, or 23.5%.

Employment and Support Allowance is payable at the same rate as IB for people in the Work-Related Activity Group, who are deemed to be able to resume or start work with support, and at slightly more (£96.85) for people in the Support Group, who are deemed unable to work. However, as explained above, it is intended to be considerably more difficult to claim and is paid at rates similar to Income Support (which is £64.30 a week for over-25s) while people are undergoing the assessment process. Contributions-based ESA will only be payable, under new proposals, for one year for people who are in the WRAG and who are getting paid non-means-tested benefit from their National Insurance contributions. After this, it will only be paid on a means-tested basis; the government predicts that 40% of people on ESA will lose any entitlement to it at this point.

Disability Living Allowance is intended to pay for the additional costs of living with a disability; anyone who fulfils certain criteria can claim it, including people in work. At present, three million people claim it (60% of them of working age) at a cost of £12 billion a year. The majority of DLA claimants of working age are also on IB and/or Income Support, though a large minority are employed. NAT estimates that 7500 people with HIV, one in nine of those diagnosed, access DLA.

DLA is split into a ‘care component’ payable at three rates and a ‘mobility component’ payable at two rates. The maximum payable for people on the highest rates is £121.25 a week, with the lowest rates taken together coming to £37.90. At present, medical certification is provided by claimants’ GPs, with medical inspection by the DWP only in some cases.

The government wants to cut a minimum of £1.4 billion, and up to £2.4 billion (20%), from the DLA budget and to this end is going to replace it with a benefit called the Personal Independence Payment (PIP), due to start in 2013 (see more in main piece).

DLA is a ‘gateway’ benefit to a lot of other disability allowances including travel passes and the disabled parking Blue Badge scheme. People who receive the higher mobility rate are also entitled to join the Motability scheme, which provides a car in lieu of that part of the allowance.

Housing Benefit (HB) is the single most expensive benefit apart from pensions, at a cost to the taxpayer of £21 billion a year. The government wants to save £1.8 billion from this budget. They will do this by placing a cap on benefit payable to people in private accommodation so that the maximum payable will cover just the lowest 30% of rents in the local area: previously this cap was 50%. This has been criticised as forcing people to move out of expensive areas like London and Brighton. This will disproportionately affect people with HIV, who are concentrated in such cities and attend clinics there.

One other important change, amongst others, is that people who have been on Jobseeker’s Allowance for more than a year will lose 10% of their Housing Benefit.

The government eventually plans to unite all employment- and income-based allowances into a single allowance called Universal Credit. This will include ESA, Income Support, Jobseeker’s Allowance, Housing Benefit and tax credits, but will exclude PIP, Carer’s Allowance and some local benefits such as Council Tax Benefit.

What’s happening to DLA?


As we explain (opposite), a new benefit is also going to replace DLA, starting in 2013. We know that the new Personal Independence Payment (PIP) will be assessed in a similar way to ESA, which will in most cases involve a face-to-face meeting with a healthcare professional contracted by the DWP, as with the ESA Work Capability Assessments.

At present, what will happen to DLA is in the form of proposals: the government has recently finished a public consultation but there are, as yet, few details of how PIP will work.11  The consultation paper says that the cost of DLA has become unsustainable and that three times as many people as originally intended are claiming it. Claimants’ entitlement to DLA is already subject to periodic review, but it is clear that the government intends to make it a great deal stricter. Reviews under the new PIP criteria are intended to start in 2013. Chancellor George Osborne said in the Budget12 that the government wishes to save at least £1.4 billion from the DLA budget, mostly from people of working age.

The assessments will not only be stricter, but will be based on what a person can do rather than what help they need to do it. “The new assessment will focus on an individual’s ability to carry out a range of key activities necessary to everyday life,” the consultation paper says. This implies it will become much more like the ESA assessment, though focused on daily living rather than workplace tasks.

This could set up a confusing situation whereby claimants will be assessed for two different benefits, possibly by two different bodies, using similar but not identical criteria, and receive very different decisions.

“The government is exploring using the WCAs made for ESA to help decide PIP claims,” says Chris Morley, “but the purposes of ESA and DLA/PIP are different. You couldn’t call the PIP assessment a ‘Work Capability Assessment’ because it is intended to help with the extra costs of living with a disability, whether or not you are working: Stephen Hawking could get DLA.”

John of ThCell is concerned that any contradictions in the medical evidence submitted to ESA and DLA claims may trigger DLA reviews. In Scotland, WCAs and the old IB assessments have already been used to determine entitlement for DLA. Alison Lord, THT’s Welfare Rights Officer for Scotland, says: “This is something we constantly have to challenge in DLA appeals, and there is already much case law about it.”

Changes proposed for the new benefit include having a new ‘daily living component’ instead of the care component, with two rates rather than three. Only people with a long-term disability will be included: claimants will have to show that they have had their disability for at least six months and are likely to have it for at least another six, which will tend to, for instance, exclude people newly diagnosed with HIV, unless they have a previously diagnosed medical condition as well. DLA includes a list of conditions which automatically qualify people for the benefit such as kidney dialysis; the PIP consultation paper implies that this list will shrink and may vanish altogether, even for people with terminal diagnoses.

The consultation says everyone receiving PIP will be regularly reassessed for entitlement; this is not automatically the case at present for DLA, though there have been three review projects in the last four years to ensure correct payments, as well as random checks.

It also lays strong emphasis on the responsibility of the individual to report changes in their circumstances, including improvements in health, between reviews. “If an individual is found to have knowingly withheld information about a change in circumstance which would have resulted in a reduction in benefit, they will have to repay the amount claimed,” the DLA consultation paper says. This is nothing new – DLA claimants have always had the responsibility to report changes in circumstances – and it is unknown whether the language of the paper implies a more rigorous process of fraud detection.

What you can do about it

Firstly, you might want to think about the advantages of going back to work. In the previous issue of HTU,we looked at the changes sweeping the HIV sector and ended the piece with Dr Mike Youle commenting that: “All my patients who take the jump into work have benefited hugely from it.” Losing benefit may not be a disaster if it acts as a spur to re-skill.

Paul Clift, patient representative at King’s College Hospital in south London comments: “For some people losing benefit may be a negative, but for others it can – and sometimes does – come as an encouragement to achieving a greater degree of self-realisation.” HTU will be looking at the issues of going back to work in a later edition this year.

The first thing to do is get expert advice from the organisations quoted in this piece (contact details below).

If, after consultation, you are quite sure you are no longer going to be entitled to benefits and wish to avoid a Work Capability Assessment, you can give up a benefit voluntarily just by writing to the DWP and saying you wish to stop receiving it. However, you may be cutting yourself off from assistance (such as help getting back in to work), which you are in fact entitled to, and it may be better to notify a change of circumstances and proactively request a reassessment.

If you still need benefit, however, you don’t have to sit there helpless while the benefit-reform juggernaut rolls over you.

If you receive notice of reassessment, don’t panic! Follow the advice above, get expert advice on your situation, see a benefits adviser and your HIV specialist or GP, and document and make copies of everything you can. If possible, get your doctor and your benefits adviser to work together to describe and present your personal situation in a way that is clear and relevant for the health assessors.

Your experience may have useful lessons for other HIV-positive people and for the organisations supporting them as well. “Always share your experience with the HIV sector,” says John. “Policy requires strong evidence to bring about a more equitable result for HIV-positive people. Work Capability Assessments are being annually reviewed and the more evidence we collect, the better the impact next year.”

Lisa Power, head of policy at the Terrence Higgins Trust (THT) says: “People can do a whole range of things, depending on how confident they feel and which parts of the legislation affect them in particular.

“Firstly, if you get an unfair decision, you must challenge it, because challenges often work. Read stuff from the Thcell, THT, NAT and GHT websites; check your facts as well as talking from experience.

“You can write personally to your MP, or make an appointment to see them at their surgery, making sure it’s one they do personally rather than a volunteer helper. Getting to talk directly to your MP has a lot of impact.

“You can join THT and be part of our campaigners’ network. We will be running a number of campaigns related to the changes in benefits and legal aid.” (See www.tht.org.uk/membership.)

NAT’s new HIV Activists Network (see www.nat.org.uk/living-with-HIV/HIV-activists.aspx) will also be running campaigns relating to the changes in benefits.

The Disability Benefits Consortium (see www.disabilityalliance.org/dbc.htm) is a policy alliance of different disability groups which co-ordinates campaigns: groups like MIND and Parkinson’s UK have also been instrumental in getting aspects of ESA changed, for instance.

NAM’s editors will continue to cover these issues and the news pages of our website regularly contain relevant news items from other sources as well. Keep an eye on www.aidsmap.com/news for developments. If you have a story to share, do get in touch with us at info@nam.org.uk, using the subject line ‘Information for HTU’.

Help, advice and campaigning

For help and advice on benefits and signposting to local services: THT Direct: 0845 1221 200, 10am to 10pm weekdays, 12pm to 6pm at weekends. www.tht.org.uk

For blogs, peer advice, and news: Thcell: http://benefits.tcell.org.uk

For help in north-west England: George House Trust: 0161 274 4499 or at www.ght.org.uk 

For help and advice in East London: Positive East: 020 7791 2855 or at www.positiveeast.org.uk

For policy, news and campaigns: National AIDS Trust: www.nat.org.uk/Our-thinking/Every-day-issues/Benefits.aspx

The editors at NAM will also be publishing updates in the news section of aidsmap.

Abbreviation guide

IB: Incapacity Benefit

ESA: Employment and Support Allowance, the replacement for Incapacity Benefit

DWP: Department for Work and Pensions

WCA: Work Capability Assessment, a procedure to determine eligibility for ESA

HCP: healthcare professional (employed to assess eligibility for ESA)

WRAG: Work-Related Activity Group: A majority of claimants awarded ESA are placed in this group, which offers back-to-work training and help and places limits on long-term ESA eligibility

DLA: Disability Living Allowance

PIP: Personal Independence Payment, proposed replacement for DLA, due to start in 2013

  1. Ibrahim F et al. Social and economic hardship among people living with HIV in London. HIV Medicine 9(8):616-24, 2008.
  2. Weatherburn P et al. What do you need? 2007-2008: Findings from a national survey of people with diagnosed HIV. Sigma Research, 2009. See www.sigmaresearch.org.uk/files/report2009b.pdf
  3. Freud D Reducing dependency, increasing opportunity: options for the future of welfare to work. An independent report to the Department for Work and Pensions. DWP, 2007.
  4. The Poverty Site: see www.poverty.org.uk/13/index.shtml and www.poverty.org.uk/14/index.shtml
  5. BBC News Two million ‘wrongly get benefit’. 2 February 2008.
  6. Wintour P Two-thirds applying for new sickness benefit are refused claims. Guardian, 13 October 2009.
  7. Viney M Draconian incapacity benefit tests are failing the sick. Guardian, 29 July 2010.
  8. Harrington M An independent review of the Work Capability Assessment. (Available online: http://www.dwp.gov.uk/docs/wca-review-2010.pdf) DWP, November 2010.
  9. National AIDS Trust Unseen disability, Unmet needs: A review of the impact of Work Capability Assessment on people living with HIV. NAT, October 2010.
  10. National costs from The Poverty Site, see above. Individual rates from www.direct.gov.uk/en/disabledpeople/financialsupport/
  11. DWP public consultation on DLA: see www.dwp.gov.uk/consultations/2010/dla-reform.shtml
  12. Hope C Budget 2010: health checks on disability claimants and changes to housing benefit. Daily Telegraph, 22 June 2010.