Fighting back and returning to work

Richard was shaking as he went into the interview room. Diagnosed with HIV when he was 23, he had been out of work for over two years. Just getting out the front door triggered huge mental anxiety. He’d already applied for hundreds of jobs and been declined, and the recession was making things tighter. Now he was sitting opposite a potential employer, struggling to explain his decision to drop out of university and leave a gaping hole in his CV. To disclose or not to disclose?

“You try and cover it up – you say you’ve been busy ‘writing’, but they’re not interested in excuses… The truth is I’d spent hours and hours depressed at home applying for jobs on the internet I couldn’t get. When there’s 500 people applying, who don’t have that gap, in some ways you can’t blame them for not giving it to me. But it’s tough, it’s really tough,” he says.

One in four people with HIV are out of work in the UK. But the unsettling truth is that this huge figure has very little to do with physical health or capability. With vast improvements in HIV treatment, many of those diagnosed are fit to work. Most are still under 60 and have a lot to offer. The real barriers to work are multiple and complex but, with commitment from those living with HIV and society, people are proving they can be overcome.

The first barrier is internal. When you receive an HIV diagnosis, it’s normal to feel huge psychological shock. Everything you thought you were and everywhere you planned on going can feel knocked off course. You might condemn yourself to the scrap heap because you think others will too. Although the Equality Act 2010 states that it’s unlawful to ask about HIV status prior to making a job offer, so there is no need for people with HIV to disclose their status to a potential employer, peoples’ apprehensions have not caught up with reality.

“Although legislation is on your side, the fear is still there,” says Donna Bone, chief executive of Positive Action, an HIV charity based in Hampshire. “The law might be in place, but people often don’t have the courage to challenge it or risk it. They may give up even applying.”

Positive Action is helping people overcome these barriers. They have joined hands with mental health charities to help people work on their goals and aspirations. They role-play interviews to give people the courage to answer difficult questions. Perhaps most importantly, they provide peer-to-peer guidance, so people can share their experiences and end the powerlessness that comes with isolation.

The second barrier is the skills gap. Richard and many others like him have found that being out of work for a few years leaves you ill-prepared for an ever-changing workplace. From everything from the IT skills you’re expected to have, to the clothes you are supposed to wear, jobs change shape and it takes confidence to believe you can adapt. The longer you’re out of work, the less likely you’ll feel prepared for it. It wasn’t until Richard saw an advert on Twitter for a work placement at the Terrence Higgins Trust, a charity that supports people with HIV, that he was able to break the cycle.

Barriers to work are multiple and complex but, with commitment from those living with HIV and society, they can be overcome

Terrence Higgins Trust’s work placement scheme lasts six months and is aimed specifically at the long-term unemployed. Sponsored by charities rather than government funds, there is less stress about meeting targets and more time to focus on personal circumstances. Last year a pilot of the programme saw ten people with HIV working up to 16 hours a week across a variety of departments in their central office. After six months, one participant was in paid full-time employment, two were in paid work and two were undertaking further education courses. Eighty per cent of participants felt more confident about coming to work.

Although research from NAT (National Aids Trust) shows that most people have a positive experience of disclosure at work, 20 per cent still feel discriminated against. Many people with HIV still do not get the flexibility they need for medical appointments or down times. But times are changing and those employers who dare to take a chance are seeing just how much individuals can contribute.


Fear of losing benefits

Leading HIV charities have expressed serious concerns about the government’s new programme to get the unemployed back to work, warning that inadequate training, unrealistic targets and misdiagnosis could leave the most vulnerable even more damaged.

Government proposals require long-term unemployed people to transfer on to a new system of benefits called Employment and Support Allowance. As they move on to that scheme claimants have to go through a work capability assessment to check they are still eligible for illness or disability benefits. But there are worries that the system is being badly managed and poorly resourced.

“The bottom line is that people want to work,” says Yusef Azad, head of policy and campaigns for NAT (National Aids Trust). “But if you were diagnosed in 1985 and haven’t worked since then, it’s difficult. There must be some sense of proportion and compassion in this. You can’t get people work-ready on the cheap.”

The biggest fear is that people who aren’t capable of employment are having their benefits cut off. In the 18 months the programme has been running, some 1,400 claimants with HIV have been assessed and 500 of those have been found ineligible for the new benefit. Meanwhile, 40 per cent of appeals against this system have resulted in decisions being overturned.

The Terrence Higgins Trust echoes these concerns, with users reporting that the government cares more about chopping the benefits bill than helping people. “People talking to us through our helplines and benefit advisers are very concerned about being treated unfairly,” says a spokesman. “There is considerable anger about that treatment.”

Common complaints include assessors having no HIV training and interviews being squeezed into 20 minutes to get through backlogs. Health records are often lost or go missing and services are described as unresponsive.


‘Lift unfair restrictions’

World business leaders are campaigning to lift travel restrictions for people living with HIV.

Bosses from companies, including Levi Strauss, Coca-Cola, Johnson & Johnson, H&M and Virgin, have called on the 46 countries where travel restrictions remain in force to lift the ban.

“These outdated laws and policies make no sense in today’s globalised world, where work-related travel is routine for corporations,” says Michael Schreiber, managing director of GBCHealth. “Companies need to send their employees overseas, regardless of their HIV status.”

Virgin founder and chairman Sir Richard Branson adds: “Travel restrictions for people living with HIV are blatant discrimination. Everyone should have a chance to travel freely. Treatment has allowed people with HIV to live fully productive lives, and these laws and policies are downright archaic.”