What It’s Like to Tell Your Boss That You’re HIV Positive

In the modern British workplace, you can’t be fired or discriminated against in any way on the grounds that you’re HIV positive. That would be a criminal offence. Notifying your employer isn’t a legal requirement, but if you do chose to disclose your status and are met with anything other than support, confidentiality and reasonable adjustments, then your employer has almost certainly broken the law.

Story va VICE.

Part of the Equalities Act 2010 was created to lessen its impact in employment and ensure disclosure wouldn’t jeopardise careers or future opportunities. Under the legislature, people with HIV cannot be treated less favourably under any circumstances. But thanks to the stigma and misunderstanding surrounding HIV, some have found it wholly ineffectual.

Had Shaun* stayed silent about his own diagnosis, he wouldn’t be fighting to save his career. “I have felt over the past two years that they were looking for ways to get me,” he says. For the last six years, Shaun has worked in the insurance department of a FTSE 100 British supermarket chain and has asked for anonymity as the situation is ongoing.

He received his diagnosis one Monday lunchtime in September of 2013. Disorientated, he returned to work the following morning, but by 9:30AM he found himself coerced into a meeting room while human resources tried to determine the cause of his visible distress. Despite his best efforts to resist disclosing his status – one he had barely begun to come to terms with – he was told he would be sent home if he refused to explain his discomfort.

“I felt forced. I wasn’t ready to say it myself, to anyone, never mind the HR person who I don’t really know,” he recalls. “I disclosed. She literally just went, ‘I’ll need to go and check whether I’ll need to tell all the first aiders.’ I was like, ‘I don’t even have to tell you, never mind anyone else.’ I got a message in the afternoon saying they had checked and they didn’t need to tell the first aiders.”

Shaun was under no legal obligation to disclose his status to anyone in his company. Six weeks later, they displayed an offensive level of ignorance around the subject.

“They took me into a room and told me they’d done some research and that if I cut myself at my desk, or in the building, to make sure that someone comes into the room and cleans it up,” says Shaun. “I believe my words were, ‘Well of course, if you were a negative person you would just lie in a pool of your own blood, wouldn’t you?’ That just angered me even more because where have they researched it? Where have they got that information from?”

The Equalities Act 2010 states employers are to make reasonable adjustments with regards to people living with HIV; the most common being time off for clinic appointments. Despite an attendance track record Shaun describes as “exemplary” (before his diagnosis he hadn’t taken sick leave since 2009), his employer began tracking his absences on a spreadsheet stored on the company server.

“My head of department wanted to know which appointments were not covered by the Equalities Act, with no details or explanation to me as to why they wanted that information,” explains Shaun. “I said, ‘You’re making me feel like you’re out to get me. And, allegedly, that’s not the case. I don’t believe them, but at the same time they said because I’m spending so many hours out of the business, they were trying to quantify how much work I had done.”

When he disclosed his status, Shaun was stunned by how little his employers knew about HIV – especially with regards to employment law. This was, after all, the well-resourced HR department of a FTSE 100 company; that they can brazenly display such ignorance – not to mention intolerance – and get away with it doesn’t bode well for people living with HIV who work in much smaller businesses.

Alice started working as a sales consultant at a London-based recruitment firm – a small company with five employees – four months after her diagnosis. Shortly after starting her medication she fell ill and decided to let her boss know, meeting up with him in a pub outside of office hours.

“It was just awful,” she says, recalling his reaction to her disclosure. “Straight away I could tell it was the wrong thing to do because his eyes widened and then he said, ‘When am I gonna get AIDS? When am I gonna be ill?’ He started to freak out and then said he needed to change the contract because if I fell over he was going to be sued. He said, ‘Why the hell didn’t you say? I think it’s so unfair that you didn’t say.’ I thought he would thank me for telling him and maybe be a bit shocked. I was speechless.”

The conversation lasted around 40 minutes, with topics ranging from the potential dangers of sharing cups and cutlery in the office (there aren’t any dangers), the jokes he had previously made about people with HIV in the office (which he then denied making), the fact he needed her parents’ number in case anything happened to her (he didn’t) and his anger that he wasn’t told sooner.

The discussion finished constructively with a promise that he’d put together a workable plan. She never made it back into the office. Instead, she received an email stating that she’d failed to pass her probation and wouldn’t be kept on. Compared to a previous conversation Alice had with him, it made for a sharp change of direction.

“He honestly was like, ‘You’re gonna make loads of money,'” says Alice, considering their relationship prior to his disclosure. “We were working really closely together, starting to do other projects.”

While Shaun and Alice have faced difficulty from their employers on account of their HIV status, Jayce Carberry, 26 from Medway, Kent, suffered from the prejudice of his clients. He received his diagnosis in 2012 and at the time was working as a freelance hairdresser. When the rumours about his diagnosis started to spread through his relatively small hometown, he chose to own the situation and address them with a Facebook status.

“I was doing really well and I was busy all of the time,” says Carberry. “I text to confirm appointments, and [after my Facebook status] I would get a text or a phone call back saying, ‘I read on Facebook about your HIV and I don’t really feel comfortable with you cutting my hair.’ I would say I lost a good 40 percent of my client base.”

The most common reason his clients abandoned him was their irrational fear of what would happen if he cut himself on his scissors and they came into contact with his blood (very little, is the answer). With a sharply diminished client list, he tried to return to a salon he previously worked at and invested in. He was told hiring him “would be a risk to the reputation of the salon”. He had previously left the salon on good terms and the owner was supposedly a friend.

“I gave up hairdressing. It was demoralising with all that going on,” he says. “I got really depressed about it and hid away from the world for a couple of months and lived off my savings for a while. And then I went to sign on. I had no other option.” Carberry has since moved to Brighton. As well as setting up a blog detailing his journey, he now manages a sexual health website for the METRO Charity.

There’s a definite sense that fighting, even if you’re on the right side of the law, is difficult, if not impossible. While Shaun may yet find himself in an employment tribunal, Alice chose to avoid a lengthy and expensive trial. As Jayce Carberry was self-employed, he has no case at all.

Legal fees, time constraints, lack of evidence, ignorance around employment rights – the reasons why HIV discrimination in the workplace often goes unpunished and underreported are numerous. But the stigma and misunderstanding of HIV is what enables the law to continually be undermined. Until companies – and the general public – gain better knowledge of what the virus is, these stories will sadly continue to repeat themselves.

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*Name changed to protect identity

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How schools are getting it wrong on HIV

Leo found out he was HIV positive when he was 12. A few months later, in a personal, social and health education lesson, the teacher was discussing HIV and Aids: “And some of the pupils were joking around, and the teacher said: ‘Guys, it’s not funny! If you have HIV, you don’t have long to live. If you have HIV, you’re going to die.’”

Post via The Guardian

 

Leo remembers trying to remain composed, but he couldn’t: what he’d heard was so shocking, so unexpected. His teacher noticed the tears running down his face, took him out of the classroom and asked: “What’s wrong?” And Leo said: “Is that what’s going to happen to me, sir? I’m HIV positive.”

The truth is that Leo isn’t, and never was, going to die. Like most of the 1,000 or so school-age children in the UK who are HIV positive, his condition is carefully monitored and well managed by drugs. What he heard from his teacher that day was incorrect: misinformation from someone in a trusted position who a pupil would usually expect to be correct.

Leo’s tale is one of many examples of how wrong schools often get it where HIV is concerned. Students have been humiliated and shocked in their own schools, and some are reported to have been excluded by their school on disclosure of their HIV status.

As well as causing distress to affected pupils, teachers’ misconceptions – when passed on to other children – ensure a new generation is, in turn, misinformed. All of which explains why the Children’s HIV Association (Chiva) is reissuing guidelines for schools this week, and why its projects manager, Magda Conway, says all teachers need to become much more aware of the issues around pupils who are HIV positive or who are affected by HIV through someone close to them. “Teachers aren’t a bad lot, we don’t want to vilify them, but many of them are very ill informed about this,” says Conway. One survey carried out by Chiva last year found that fewer than half of teachers were aware that mother-to-child transmission is the most common route of infection to children, and more than 50% believed HIV could be transmitted via spitting or biting.

“The problem is that many of them got their information about HIV from the notorious Aids campaign of the 1980s – the ‘Don’t die of ignorance’ campaign,” says Conway. That campaign, run at saturation levels by the Department of Health, featured crumbling mountains and a falling tombstone, and a voiceover that spoke of the virus as “a threat to us all”, the cause of “a deadly disease [with] no known cure”.

“Science has come on in leaps and bounds since then – today it’s a manageable health condition, and it needs to be treated that way. Too many teachers still base what they know on the ‘Don’t die of ignorance’ campaign.”

She says schools need to ensure that a pupil who discloses their HIV diagnosis will be sensitively and professionally supported. “If teachers become aware that a child in school is living with HIV, they need to understand that there is no risk to anyone else, and that confidentiality should be respected.” The revised guidelines spell out the most misunderstood key facts, including the crucial issue that HIV cannot be passed on through normal play and normal childhood interactions.

“No one has ever contracted HIV in school, period,” says Conway. “A pupil or a teacher living with HIV poses no risk whatsoever to the school community.”

Those with HIV, the guidelines spell out, can have every expectation of living long and happy lives. And confidentiality is essential to people living with HIV, due to the stigma that remains in society around the virus.

The biggest thing we’re fighting and the biggest problem for pupils is the stigma around HIV

Magda Conway

In an attempt to step up awareness, Chiva took Leo and a group of other HIV-positive young people to a meeting at Westminster last week, where they shared their stories with MPs and peers.

Cece, 17, told how her boyfriend found out she was HIV positive and started spreading the story around the school. “I stopped taking my meds because I thought that would be a way of forgetting about it – everything seemed so awful,” she says. “When you’re HIV positive you live a double life, and at some point it’s going to cross over.” And what happened next? “You really find out who your friends are: a group of my friends got the kids together who knew and said, stop spreading these stories. But the point is that it should have been the teachers who did that, not the children.”

Sometimes the ignorance of teachers puts their better-informed pupils into a difficult situation, as happened to another pupil, Evie. “We were in a science lesson and the teacher was asked, how is the HIV virus passed on? And the teacher said, you can get it from kissing someone. And I knew, of course, that this wasn’t true, but I wasn’t able to put the teacher right because how could I have explained how I knew without disclosing my own HIV status, which it wouldn’t have been appropriate to do?”

As heartbreaking as Leo’s experience was that of Shona, who, like Leo, knew she was HIV positive but hadn’t disclosed it to her school. “I was in a humanities class and the teacher started going on about what HIV meant. She said if you have it, your life expectancy is probably going to be about 10 years. And I was in year 9 so about 13 at the time, and it was shocking and confusing. I thought, does that mean I’ll only live another 10 years? It wasn’t what I’d been told, but when you hear a teacher saying something like that, it makes you doubt what you thought you knew.”

Other youngsters told stories about overreaction on the part of their teachers when their status was disclosed. One boy talked of feeling alarm bells were ringing when he had a nose bleed; a girl spoke about how she was offered a nurse to talk to daily. “I said, I don’t need to talk to a nurse every day! I see enough nurses. I just want a normal life.”

The lack of good management for HIV-positive pupils means they sometimes miss out on, for example, school trips – as happened to Cece. “I wanted to go on a skiing trip to Austria when I was in year 8. It was 10 days away, and as soon as I told my mum she was like, how on earth can you do that? You have to take your medicines, you can’t go abroad.” Cece didn’t go on the trip. “But why should I have missed out? The truth is I could easily have gone on that trip if there had been proper support for me in the school.”

What schools need to provide, says Conway, is the potential for a pupil who is HIV positive to tell one trusted person. “You get some schools where it’s discovered that a pupil is HIV positive and there’s a kneejerk reaction based on ignorance. I’ve heard of pupils even being excluded – that happened as recently as 2013,” says Conway. In that instance it was a third party, a community worker, who disclosed the pupil’s HIV status to the school, which then took advice from a national teaching organisation – advice that turned out to be 25 years out of date. At another school she was told about, says Conway, the headteacher told an assembly that a pupil was HIV positive and was being excluded.

The National Association of Head Teachers is backing the Chiva campaign. Its president, Tony Draper, says schools need to make themselves safe places for children who are HIV positive. “They need to ensure that pupils can disclose their status to one person, and no one else needs to know,” he says. “At the moment, pupils are missing school for medical appointments without being able to tell anyone why they’re away. That needs to change.”

The truth is, says Conway, that the treatment of pupils with HIV should be the same as the treatment for any other pupil: there are no special requirements, except the need for one person they can feel confident in disclosing their status to, should they choose to. “The biggest thing we’re fighting is the stigma that surrounds HIV, and the biggest problem for pupils who live with HIV isn’t physical health issues, it’s mental health issues. Children who are HIV positive are more likely to have mental health problems, more likely to self-harm, and more likely to take their own lives. And that’s all connected to the pressures that go with being HIV positive – and that’s what we want schools to help change.”

All children’s names have been changed

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Leicester West MP Liz Kendall HIV patients not helped by NHS shake-up

MP Liz Kendall with LASS CEO Jenny Hand at the Women’s Health Conference. Photo by Tom Robson

It has been three decades since we first became aware of HIV in Britain. During those dark early years, having HIV was like being given a death sentence.

Fear, stigma, discrimination and ignorance left people suffering in silence and perpetuated the spread of this terrible disease.

We’ve made huge strides forward since the 1980s and organisations such as Leicestershire Aids Support Service (Lass) have led the way.

People with HIV can now expect to live longer, healthier and happier lives. But there is still much more that needs to be done.

Last week, I opened Lass’s conference at De Montfort University, which brought together more than 100 delegates from across the country to discuss the challenges ahead.

First, we must continue to raise public awareness about HIV/Aids because, despite all the progress, it hasn’t gone away.

There are 100,000 people in Britain living with HIV and nearly a quarter of them do not know they have contracted the virus.

The diagnosis rate in Leicester is just over three people for every 1,000 of our population, which is more than twice the national average.

Second, we must redouble our efforts to prevent people getting the disease, including by promoting safe sex, and to encourage more people to get tested.

This means confronting head-on the idea that “it can’t happen to me” and tackling some of the difficult issues around religious belief and stigma. Third, people with HIV need the very best standards of care.

This includes not only clinical treatment but help and advice with housing, employment and personal finances, and emotional support, too.

Unfortunately, these challenges are now harder to address because of the Government’s NHS reorganisation.

Contraception services, testing, treatment and public awareness campaigns have been fragmented.  Responsibilities are now split between national bodies including NHS England and Public Health England and local organisations such as GP clinical commissioning groups and councils.

This does not make sense for patients or get the best value for taxpayers’ money.

The resulting confusion and uncertainty come at the same time as funding for local NHS, council care services and voluntary organisations such as Lass is being cut.

Lass is trying to support people with HIV to better cope with these combined pressures.

Its pioneering women’s programme is helping improve patients’ understanding of their condition and become more involved with their care.

It brings women with HIV together to share their experiences, learn skills, gain qualifications, find work and improve their overall quality of life.

Families and friends are supported, too.

So far, 154 women have benefited. Their relationships with NHS staff have improved, resulting in a better experience of care.

Eight women are now in employment and an additional 13 have enrolled in college courses.

I’m determined to champion the excellent work of organisations such as Lass as a local MP and a member of Labour’s shadow health team.

It’s only by working together that we will address the big health challenges we face, including HIV and Aids.

The LASS Women’s Programme

The LASS Women’s programme is a sustainable project run by women for women, helping them to:

• Understand more about HIV
• Become more involved with (and knowledgeable about) their health care
• Reduce feelings of alienation and isolation
• Receive and give peer support
• Learn new skills and gain qualifications
• Return to (or enter into) the workplace
• Gain an improved quality of life.

For your copy of the report, please click here

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The LASS Women’s Programme

The LASS Women’s programme is a sustainable project run by women for women, helping them to:

• Understand more about HIV
• Become more involved with (and knowledgeable about) their health care
• Reduce feelings of alienation and isolation
• Receive and give peer support
• Learn new skills and gain qualifications
• Return to (or enter into) the workplace
• Gain an improved quality of life.

Rationale behind the programme

The pressures facing LASS and many other HIV support organisations, were compounded by those facing its service members, many of whom found themselves living in increasingly precarious and difficult circumstances.

LASS were aware of the changing health and social care environment, along with the changing education and employment environment. In addition, budgets have been cut from many of these services, including those provided by LASS. These cuts were even greater than expected, consequently having a far wider and greater impact than initially anticipated. Therefore, LASS took steps to initially concentrate on helping women living with HIV to adapt to the changing environment. Further projects are planned for other groups who are equally affected by these changes.

Leicester has the 6th highest prevalence of HIV outside London in England among people aged between 15 and 59 years. In the UK, people living with HIV are disproportionately represented in the communities of Black African people and gay men

In just one year, 154 women have benefited from this programme, 8 are now in employment, an additional 13 enrolled in college courses and 4 are now delivering sessions to other women enrolling in the programme.

Links with local health care professionals have also been enhanced, so far resulting in a new and improved HIV psychological care pathway.

Please click here for a full copy of the report.

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Black History Month 2013 – Interview with LASS’s very own, Rachael Ng’andwe

Rachael N’Gandwe receiving her NIACE Certificate

As part of NIACE’s blog series to mark Black History Month, Rachael Ng’andwe – a 2013 Adult Learners’ Week award winner – is sharing her story. Rachael is a Women’s Project Coordinator atLeicestershire AIDS Support Services, working with HIV positive women to educate and empower them through training and other opportunities.

Tell me a bit about yourself and early years.

I was born in Lusaka, Zambia. I grew up there and attended primary school through to college, where I studied Travel and Tourism. I qualified as a travel consultant, which is what I did for a living in Zambia before I came to the UK. Since coming to England in 1997 I haven’t been back.  It’s been difficult being away- part of it has been immigration and it was not possible until a couple of years ago.

What are you doing now?

I’m a single mum to an 8 year old beautiful daughter. Her dad passed away in 2009 and I have been on my own raising her as a single parent, which takes up a lot of my time as I‘m very hands on. I’m also currently enrolled in a Level 2 Diploma in Health and Social Care Course – which started September 2013.

What inspired you to get involved in learning and education?

Originally, I gave my time up for volunteering as I wasn’t allowed to work due to my immigration status. Through that, I got involved in the training opportunities available for volunteers.

My love for working with people still carried on and having left my job where I did IT with the travel consultancy job, but I didn’t get a chance to practice since I moved here. I knew I needed to do something, so with the help of the Lass the voluntary organisation I was attached with I took the ICT Level 2 and passed.

I then took every opportunity that came along, instead of being idle at home. I just got lost in studying while volunteering and this gave me a break from other personal problems.

I was also involved in family learning classes at my daughter’s school. I did maths Level 1 and went on to do Level 2 with Leicester College. I knew that I needed to improve my maths to be able to help my daughter with her homework.

Were you faced with any barriers and if so, how did you overcome them?

I had barriers getting into mainstream education because I didn’t have the right immigration status.  Although being a voluntary sector, Leicestershire AIDS Support Services (LASS) provided me with the opportunity to learn and created a platform for me to use my learning. Even after obtaining my leave to remain in the United Kingdom, getting into university has not been easy because of the conditions on my status. I like many others whom I have come across, still struggle to meet up with financial demands to get into higher education. Passion is there but the reality always knocks us down and leaves us with the option to only do short college courses.

What was particularly helpful in supporting you to progress and achieve?

The management at LASS, in particular the CEO Jenny Hand and my line manager Juliet kisob. They have been there with me pushing me to achieve. They saw the potential which I did not see in myself to go for bigger things –they were my backbone and all that I had. I have close friends who have supported me in my journey to achieve better for me and my daughter.

What impact has winning an Adult Learners’ Week this year had on you?

It’s had a huge impact on me, especially with the women I work with. They see me in that position from the picture on my desk and they ask me questions like “How do I get onto a course? How can I get such an opportunity?” I see a change in them and they want to do better for themselves.

My daughter is also very proud of me. She asked me, “Mummy did you graduate?”

With significant strides in race equality over the last 30 years, what do you think the barriers for BAME learners are today?

It depends on where you go, but language is still a barrier when it comes to learning. If you don’t have English how will you understand the person who is teaching you? Without 1:1 support learning is very hard for people whose first language is not English.

It’s the same for children – language is a problem and they need extra support to achieve in class.

Refugees and asylum seekers also face barriers as there is stigma attached to them. I experience this myself – people look down on you because you apply to stay in the country on these grounds. They don’t see your potential – they only see the status so you always have to challenge and speak out or get taken for granted.

I also feel that the welfare cuts have hit people in a big way – women didn’t need to work in the same way before, but the cuts will mean everyone has to work and no more stay-at-home mums.

For some it will be very hard especially if they have not worked before. Where do they start and who is there to support them? Until there are some changes in the way the system works, this will remain a problem in our society.

I still believe the Equality Act has created more opportunities for BAME background. People just need to be empowered to challenge inequality when things are not right.

We know that there are significant differences between particular groups and sub-groups of minority ethnic learners. What can practitioners and providers do to support them?

Black learners sometimes have to do extra to get the same credit as other learners. The expectation from black learners is higher because their proficiency levels are not recognised – this is a barrier because they have to achieve exceptionally high grades in order to compete on the same market level. There will always be a gap in achievement between ethnic groups until they change the criteria in which enrolment and provision of educational materials is awarded to individuals regardless of ethnic back ground.

What would you like to see changing over the next 30 years for BAME learners and what role do you want to play in that?

Provision of a wide range of courses for different skills to match the employment requirements should be offered to BAME on quota basis. We should learn from what skills people are bringing into the country and increase the variety. I also think people should be afforded a future based on their capability – not on their status. Too many highly qualified people come to this country and end up stacking boxes in factories.

Organisations such as accounting firms that offer different routes into tertiary education such as articles should open this route to all individuals especially the BAME communities. Apprentiship courses should be offered to BAME communities at level 5 and 6 for those exiting secondary school educations.

How do you see your role as a BAME learner and the impact this may have on BAME learners, aspiring leaders and the wider community?

First and foremost – for single mums; be a role model giving hope to achieve anything you want to achieve. I want to be an advocate for under achievers by signposting them to relevant agencies and inspiring them to have a sense of self belief. My role as a BAME learner should inspire aspiring leaders and the wider community to engage in learning regardless of age, gender and ethnicity.

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Why sex education matters

Children as young as four ask where babies come from. Photograph: Veer/Getty Images

A year-long campaign is calling for good quality lessons that explain more than just the biology of puberty and reproduction.

Sex education has mattered to a lot of people for a long time. This year, the Sex Education Forum hosted by the National Children’s Bureau, celebrates 25 years since its launch. SEF was born with eight members, including three religious organisations. Journalists were sceptical that we would agree on much and certainly not about teaching topics such as homosexuality and abortion. Teachers, however, responded enthusiastically, expressing their feelings of isolation and frustration at the lack of support for their work.

Over the years people have argued that sex education must be more than just the biology of puberty and reproduction, and must look at the real life context too – ie relationships. So SEF and others have called for compulsory sex and relationships education (SRE) to be taught to all children and young people from primary schools upwards.

One young person told us sex education matters because “without it, we’d still be giggling uncomfortably whenever anything to do with sex is mentioned”. The word “sex” seems to be a problem, but it shouldn’t be. Sexuality is an intrinsic part of being human and sexual development is a normal part of growing up. Some primary schools call the topic “growing up” and this can be more meaningful to young children and more comfortable for adults. It doesn’t matter what it is called as long as it is happening, and by “it” we mean learning about family, friendships, staying safe, healthy relationships, puberty, sexual health and more.

Sex education matters in primary schools because four-year-olds ask where babies come from, five-year-olds browse the internet and six-year-olds want to be popular with their friends. Sex education matters at home because children want their parents to be the first people to talk to them about growing up, sex and relationships. Yet many parents say they lack confidence to answer their children’s questions frankly. Sex education matters in secondary schools especially because this is a time when young people come under new pressures from their peers and are reaching for more independence and considering their own views on love, romance and what is acceptable or unacceptable for them.

Today, the consensus of support for SRE is bigger and broader than ever before. SEF represents diverse voices from more than 75 religious, family, youth, disability, health and education organisations. All our member organisations believe sex education matters. For example, Kids, a charity working with young disabled people, joined SEF because clients said their experiences of SRE were “too late” and they were “talked at rather than listened to”.

Around 20,000 young people took the time to answer a UK youth parliament survey about SRE; more than a third said their SRE was “bad” or “very bad”. That was in 2008 and young people are still saying the same today.

There are signs that SRE is improving but progress is too slow and too patchy. In some primary schools the only SRE is one lesson about puberty taught in the summer term before moving to secondary school and sometimes that will be for the girls only. In other areas primary and secondary schools have worked together to plan a comprehensive curriculum that grows with the child and builds vocabulary and knowledge at an appropriate pace.

It is encouraging that MPs from all parties attended a recent Westminster Hall debate to talk about personal, social, health and economic (PSHE) education with loud support for making relationships education part of every child’s learning. Ann Coffey MP said “the knowledge that PSHE gives children will help prevent further Rochdale and Jimmy Savile scandals” and she is right. The evidence shows that young people who have had comprehensive SRE that starts early and is taught by trained educators are more likely to have sex for the first time at an older age, with a partner of a similar age and use contraception.

To highlight the consensus that sex education matters and to press for the political support needed to get good quality SRE in all classrooms, we are running 12 months of online discussion and debate.

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Original Article by Lucy Emmerson, Sex Education Forum co-ordinator

via guardian

Sex education: we should teach young people about more than the mechanics

Sex education: too much emphasis on the mechanics, says Doortje Braeken, who argues for more teaching about sexuality. Photograph: David Levene (The Guardian)

Sex education polarises opinion, sets legislators against parents and parents against schools and regularly inflames media opinion. Somewhere in the middle sit young people: ill-served, receiving confused messages and gaining their information from famously unreliable sources, such as peers or the internet.

Sex education, as all too many experience it, is like teaching people how to drive by telling them in detail what’s under the bonnet, how the bits work, how to maintain them safely to avoid accidents, what the controls do and when to go on the road. It’s all about the mechanics. And that’s it.

There’s a growing consensus that young people don’t need sex education, they need comprehensive sexuality education or CSE..  CSE is sex education plus: the mechanics, plus a lots more about sexuality.

That means not just teaching young people about the biology of sex, but also teaching them about the personal, emotional, societal and cultural forces which shape the way in which they choose to conduct their lives. Armed with this understanding, young people can make far more considered decisions.

This approach has the potential to unite the warring factions that bicker over the fundamental rights and wrongs of sex education: CSE equips young people with basic biological knowledge, but at the same time it equips them to question why they act in certain ways, and whether or not it is right, valuable or desirable to do so. CSE imparts information, and promotes responsibility.

CSE contains components which allow learners to explore and discuss gender, and the diverse spectrum of gender identities that exist within and between and beyond simple heterosexuality. It also contains components that examine the dynamics of power in relationships, and individual rights.

These are not taught as theoretical concepts. They have serious practical effects on the way in which young people interact with each other, both in the sexual and the wider social and educational spheres. Studies have shown that addressing such issues can have a marked impact both in school and the expansion of young people’s social networks.

CSE also engages with what some doubtless regard as difficult territory. Sexuality – however, individually, we choose to regard it – is a critical aspect of personal identity. The pleasure that we derive from sexuality, even if that pleasure is the pleasure of feeling that a reproductive duty is being fulfilled, is a vital part of our lives: it’s what makes us human. CSE views sexuality as a positive force.

CSE exploits a variety of teaching and learning techniques that are respectful of age, experience and cultural backgrounds, and which engage young people by enabling them to personalise the information they receive.

What is most telling is that a large number of studies have reached the clear conclusion that CSE does not lead to earlier sexual initiation or an increase in sexual activity. To paraphrase, traditional sex education seems to say: “If you’re going to do it, this is how everything works and you need to protect yourself in these ways to prevent this.” CSE says all that, but it also asks young people to ponder what exactly “it” is, and to deepen their perception of its implications.

In a political environment which is quantitatively driven, we measure the success of sex education in straightforward health behaviour indicators. These are easy to manage: numbers which build on existing health surveillance and measurement systems, and which are simple to understand from an objective point of view.

However, CSE is a far more nuanced discipline, and it will be necessary to include other measures of programme success: qualitative, subjective indicators which relate to gender equity, empowerment and critical thinking skills.

While governments have recognised young people’s right to CSE via various intergovernmental resolutions and conventions, the journey from recognition to delivery will be a long one. Even in the UK, there are notable differences, with England having a bare-bones biological approach “puberty, menstruation, contraception, abortion, safer sex, HIV/Aids and STIs should be covered”, while Wales and Scotland have curriculums which incline far more towards the CSE agenda.

The International Planned Parenthood Federation, the organisation I work for, and its 153 member associations around the world, has been instrumental in pressing for the adoption of international policy commitments to CSE. For many, it may seem like we are pushing 10 steps ahead of the agenda when the basic principle of young people’s right to even the most basic introduction to the biology of sex is still not universally accepted.

Our view is different: it is that CSE is what will secure widespread acceptance of sex education, because it is about more than the mechanics of sex. It is about helping young people, the world over, to become more healthy, more informed, more respectful and more active participants in the life of their community and their nation.

Doortje Braeken is the IPPF’s senior adviser on adolescents and young people, responsible for co-ordinating programmes in 26 countries implementing a rights-based approach to youth friendly services and comprehensive sexuality education. She will be among the panellists for a live discussion on sex and sexuality education, taking place on the SocietyGuardian site from noon to 2pm on Thursday 31 May

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You may also be interested in:

• Sexual health teams ‘should offer alcohol advice’ (lass.org.uk)
• Vote for Pozitude! The Website by Children Living With HIV (lass.org.uk)
• How Good is Sex Education in Schools? (lass.org.uk)
• HIV Education Fails To Reach A Quarter Of Young People

Education for awareness of and attitudes to HIV

Positive? (www.learningpositive.com) is a HIV information service website and the end work of the commitment and hard work of many UK Stakeholders, Partners and key players who in many different ways gave of their time, skills and expertise to help put together this innovative teaching and learning resource.

This highly accessible teaching and learning tool will challenge you, engage you, and empower you. By working through the different sections of the website, on your own, with friends or under the direction of your teacher, you will deepen your understanding of the facts about HIV whilst increasing your awareness of its social impact.

The interactive website is a tool to teach young people about HIV, how it affects people in the UK, how to prevent it spreading and how to reduce the discrimination experienced by those living with HIV. It also provides insights into the global dimension of the epidemic and introduces a series of interactive activities to raise awareness among the new generation and encourage positive, campaigning action to be taken.

As well as learning about HIV for yourself, you will also use your knowledge and understanding to develop an original campaign to advocate for people with HIV. As you work through the various activities, remember to think about which information would work well in raising awareness about key issues related to HIV.

The site helps to educate issues such as prejudice and stigma, discrimination, criminalisation and human rights and many more.  Check it out, it’s very useful for yourself and to pass to others.

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PrEP acceptable to UK gay men, studies find

Pre-exposure prophylaxis (PrEP) would be an acceptable HIV prevention strategy for large numbers of gay, bisexual and other men who have sex with men in major UK cities, according to two studies presented to the British HIV Association (BHIVA) conference in Birmingham this week.

The conference also heard details of a small pilot PrEP study, likely to start recruiting later this year.

A cross-sectional survey of 842 HIV-negative gay and bisexual men, recruited at bars, clubs and saunas in London, suggested that half the respondents would be interested in taking PrEP.

Respondents were given information about pre-exposure prophylaxis and asked: “If PrEP were available, how likely is it that you would take a pill (oral dose) on a daily basis to prevent HIV infection?”.

Half said yes, with 16% saying they were likely to take PrEP and 34% saying they were very likely to. Men interested in PrEP were slightly more likely to be under the age of 35 (AOR adjusted odds ratio 1.58), have attended a sexual health clinic in the past year (AOR 1.59) and to have previously taken post-exposure prophylaxis (PEP) (AOR 1.96). After statistical adjustment, various measures of risky sex were no longer associated with interest in PrEP.

In this survey, 17 men (2.1% of those answering the question) said that they had previously taken antiretroviral drugs to reduce their risk of HIV infection.

Secondly, clinicians at the Manchester Centre for Sexual Health surveyed HIV-negative men attending their service who reported unprotected receptive anal intercourse. Of the 121 men who responded, 36% said they would be “very willing” to take PrEP while only 14% said they would not take the treatment. Daily dosing was perceived as a better option by four fifths of respondents – just one fifth would prefer taking a dose before sexual activity.

These data confirm and reinforce findings from a study reported in November 2011, which found that half the gay men surveyed would consider taking PrEP. Once again, daily dosing was preferred to taking a dose before sex. In the qualitative data, men commented that sex is often spontaneous and that they felt daily dosing would facilitate adherence.

However these data are all based on giving men a few key facts about PrEP and presenting it as a hypothetical option. In real-life circumstances, where men think more seriously about PrEP as an option and hear friends’ experience of taking it, actual uptake and sustainability may be very different.

While the Manchester respondents largely assured the researchers that they would take all their doses of PrEP and wouldn’t have more risky sex, real-life experience needs to be tested in research.

To this end, the Medical Research Council are seeking funding for a 5000-participant, two-year study which would randomise HIV-negative gay men who report unprotected anal intercourse to either take PrEP (Truvada) and attend motivational interviewing (intervention group) or to be put on a one-year waiting list for PrEP and to have motivational interviewing in the meantime (control group).

For the researchers, it is crucial that this is an open label but randomised study, in which participants know whether they are receiving the actual drug. This unusual research design would, they argue, tell us more about the real-world effectiveness of PrEP than a blinded study as it would take into account the possible impact of participants taking more sexual risks because they felt that PrEP afforded some protection. (Researchers call this ‘risk compensation’ or ‘behavioural disinhibition’).

Rather than test efficacy in artificial conditions, the study would therefore test effectiveness in more realistic UK conditions.

So far, however, the potential funders of this costly study have not been persuaded by this argument and it is unclear whether the study will be able to go ahead.

What will, however, start recruiting later this year is a pilot version of the same study, aiming to include 500 men who attend one of around twelve sexual health clinics.

As well as allowing the researchers to have a dry run of the main trial and identify teething problems with its strategy, it should also provide valuable information on the number of men who actually follow through on a clinician’s offer of PrEP. Data on the characteristics of men who seek PrEP, drop-out rates and risk compensation will also be collected.

The researchers intend to take some of these data back to the main study’s potential funders, in order to support a revised application.

Acceptability of taking HIV treatment for prevention purposes

As well as asking people hypothetical questions about PrEP, researchers have also been asking people waiting for an HIV test result hypothetical questions about treatment as prevention.

Individuals from high-risk groups attending the Jefferiss Wing at St Mary’s Hospital for HIV testing were given an explanatory paragraph about treatment, infectiousness and safer sex. They were then asked: “If you were diagnosed with HIV would you consider taking treatment to reduce the risk of passing on infection (even if you did not need to take treatment for your own health)?”.

Four out of five respondents said ‘yes’. Encouragingly, gay men who reported unprotected anal intercourse in the past three months were more likely than others to be interested in the idea. Less encouragingly, people who had had a sexually transmitted infection or who had previously taken PEP were slightly less likely to say that they would take treatment for prevention.

The researchers suggested that the latter factor may be associated with PEP users’ experience of side-effects. It contrasts with the findings of the London PrEP attitudes study described above which found people who had previously taken PEP more likely to be interested in PrEP.

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Related articles

• Contraceptive requirement may have compromised FEM-PrEP study (lass.org.uk)
• A Tale of Two Trials: How Adherence is Everything in PrEP (lass.org.uk)