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Issue

The UK provides specific state benefits for those unable to work through disabilities. For many years, someone diagnosed with HIV was likely to be advised to cease work, go on benefits and live what was left of their life to the full. Following improvements in treatments since the late 1990s, increasing numbers have stayed in work and planned for a longer life than previously expected.

Some people who have done well on the treatments have been able to find new work, but many have remained on relatively high “Special Rules” benefits intended for people who were expected to die within six months. The level of benefits and other support has effectively left some people in a “benefits trap”, meaning they would have a decreased standard of living if they returned to work or, if work proved too difficult to manage due to ongoing ill-health, they would not be able to return to the same level of benefits.

This, combined with fear of HIV prejudice in the workplace, has kept a number of people with HIV away from paid work for over a decade. However, in 2007 the Department for Work & Pensions (DWP) planned a full scale review of these benefits on the grounds that anyone who had drawn them for longer than three years might no longer be terminally ill and thus not entitled to them.

Description

THT, along with MacMillan Cancer Support and various benefits support networks, was notified of a formal Government review of these “Special Rules” benefits. Participation in advance scrutiny of the Review procedure was subject to a confidentiality agreement until the Review was public. THT took the view that, while this would inevitably cause criticism, it was preferable to be able to influence the Review than to be excluded. The Review was likely to disproportionately affect people with HIV and with some cancers, particularly leukemia, where treatments had radically improved within the last decade.

THT involvement influenced the process in a number of ways, primarily relating to confidentiality and disclosure and to use of medical evidence, including brokering a meeting between benefits staff doctors and HIV specialist clinicians. We also ensured that people being reviewed could nominate their specialist doctor to make a report rather than a non-specialist. THT also verified the legality of the move via benefits legal specialists.

THT’s national phoneline number was subsequently included in all letters notifying individuals of the benefits review, in order to be able to give initial advice and referral to local benefits advice and support across the country. Because of this, THT has also been able to notify the DWP of difficulties people are encountering or miscarriages of process. All local advice staff were trained to support people whose benefits were being reviewed and information has been posted on the THT website for those affected and others concerned.

The Review caused considerable anxiety and distress to some recipients, who feared both loss of benefits and being unable to find or manage employment. Amongst the problems it highlighted were:

• the major decline in HIV specialist benefits advice since the advent of antiretrovirals
•  the poor quality of some local benefits advice services funded from the specially allocated Aids Support Grant
• the need for specialist employment advice and support to people with HIV
• the need for more practical work to challenge HIV prejudice in the workplace
• the concentration of long term survivors of HIV in some London clinics, where leading doctors faced making up to a
  hundred individual reports on patients
• the unexplored mental health impact of long term dependency on benefits and “institutionalisation” of some people with HIV who are long term survivors.

The Review also caused unanticipated problems for HIV clinicians, some of whom felt pressured to write overly favourable health reports for individual patients who feared loss of benefits. THT received complaints that doctors were unwilling to give the health report a patient wanted but, as one doctor told us “If I lie about one patient and get caught, all my other patients will be subject to much greater checking”.

One patient who felt not enough was being done by support agencies set up a website and blog at www.hivbenefits.co.uk in order for people to share direct experiences.

As the Review has progressed, it has become clear that many people are retaining most, and some all, of their original level of benefit although few are being confirmed in the original diagnosis (effectively, that they were liable to die within six months). Of the people with HIV reviewed by May 2008 (1477 in all), around 60% had their benefits reduced to some degree or removed entirely. However, of those who appealed against the finding, almost all won a favourable reconsideration, usually without a full appeal hearing. THT is now trying to ensure that people understand their right to appeal where a finding is incorrect.

Lessons learned

Work to support long term survivors of HIV to manage a range of issues is lacking across the UK. There is still considerable “institutionalisation” of people who may not have been supported to fully come to terms with their ongoing future and uncertain health. In particular, greater attention needs to be paid to reintegration with the workplace, resistance to prejudice, the benefits trap and poverty amongst an ageing group of PWHIV, many of whom will find considerable difficulty in getting work even if they feel fit enough to do so. While there is a fine line between minimising distress and panicking people unnecessarily, more work could have been done in advance to help people manage a likely change in circumstances. Greater attention should have been given to strategies to inform all people with HIV immediately the Review was under way. In the longer run, work to alleviate poverty and manage the social consequences of long term survival needs to be put in place.

Next steps

THT is completely reviewing our work with long term survivors of HIV, including proposals for new self-management programmes, employment related schemes and financial advice. In the shorter term, we have successfully negotiated to provide HIV awareness training to JobCentre Plus staff (Government funded advisors on finding work after long term unemployment); we are working to put much more benefits advice online; and we are liaising with the DWP, clinicians and other concerned parties to mitigate the effects of the Review and minimise individual injustices in decisions.