Children with HIV are the 'most marginalised of the marginalised', trapped by a stigma that exposes them to bullying and underachievement. But new guidelines offer them some hope, reports Karen Hooper
Chantelle, 17, has kept her secret for four years. "I feel I am living two different lives," she says. Ben, 15, is relieved that his secondary teachers know. "If I hadn't told them it would have built up and just burst out. Now I can talk about any problems." Chantelle and Ben are HIV-positive.
In 2003, 1,171 children under 14 were known to health authorities and receiving treatment for HIV in the UK, but awareness among school staff is low. Many sufferers are scared of being found out and fearful of their teachers' reactions if they disclose their illness. Most choose not to speak out. And yet guidelines released today by the National Children's Bureau through the Children and Young People HIV Network say that working towards an "HIV-friendly school" can benefit all pupils and the school.
HIV in Schools: good practice guide to supporting children infected and affected by HIV reveals how adult fears about the virus and breaches in confidentiality can jeopardise a child's education. Magda Conway, the network's co-ordinator and author of the guidelines, says HIV-positive children are the "most marginalised of the marginalised", caught in a global stigma that leaves them isolated and excluded. "We need to equip schools so that teachers feel confident in encouraging parents to come and talk to them," she says, "so they can offer the appropriate pastoral care if they decide to disclose their child's status. It's about raising the profile and acknowledging that HIV is different from other chronic illnesses."
The guide recommends, for instance, that HIV is referred to by name in school policies, documents (such as mission statements and prospectuses) and development plans. It addresses concerns about the transmission of the virus, emphasising that there are no reported cases of HIV infection in UK schools. It also outlines first-aid procedures, the law and other relevant policies. And it offers practical information on dealing sensitively with health, disclosure and confidentiality.
Sheila Donaghy, nurse consultant for paediatric HIV at St George's Hospital in south London for the past 10 years, says it's important to emphasise that HIV is different from other chronic illnesses because of the stigma that comes with it. "Families feel vulnerable because they don't feel able to challenge schools that handle the information badly," she says. She's seen how school staff can overreact, wanting to tell other parents or governors. "Schools need to be able to assure children and families that if they choose to disclose this information it will be treated sensitively and confidentially."
Chantelle lost both her parents to Aids and lives in London with her aunt and family, most of whom are unaware that she is HIV-positive. School was a nightmare, she says. She constantly had to dodge questions and lie about time off for illness, and felt like an "outcast" when children sang "offensive songs" about HIV.
Ben's time at primary school was just as tough. "I had to go into hospital when I was nine because I stopped taking my tablets. I got bullied because I used to revise to compensate for getting ill. I had a funny accent (the family had moved to the North) and I didn't have any friends." Ben, whose father died in 1996, was diagnosed at six when his mum Ann discovered, after giving blood, that she was HIV-positive. "My mum told me I had a blood disorder and that I would have to take tablets to stay alive." Ann told the heads at his primary schools, who chose not to tell other staff.
The National Children's Bureau guide suggests no more than two members of staff need to know if a child's status is disclosed, but Ann thinks all teachers should be told. "I don't believe any teacher can look after a child unless they know about their illness."
Ben's secondary school did its best to create a supportive environment. It organised an Inset day for all teachers when Ben was due to go on a school trip, to which it invited his outreach worker, Sarah Birtles from Barnardo's Health Through Action, a project in Manchester that works with young people living with HIV, and a specialist HIV nurse. Teachers welcomed the training and openness. "It has opened up the debate about the stigma of HIV, because there could be other children at school that we don't know about," says Ben's headteacher. "It helped to dispel anxieties and myths and lay the groundwork," says his head of house. "Ben can talk to me if there are any problems, but basically he wants to conform and be treated the same as other pupils." Health and safety issues are just a matter of "common sense and strictly following all guidelines", he adds.
Chantelle has received vital support from her "second family", Body Soul, a London-based charity that supports children and families affected by the virus. She started attending Body Soul with her mum when she was six.
Chantelle's aunt was present when she was told at 13 she was HIV-positive.
"I felt like I was going to die," she says. "I thought, why me?" She says the group allows her to talk to people her own age and not be judged.
"People listen and are supportive."
Education is pivotal to Body Soul's services. Rosie Turner, its child and adolescent services manager, says children born with the virus often develop more slowly than their peers; they can be smaller and may be bullied. Their education is often jeopardised by the side-effects of drugs, and depression. Body Soul runs a study skills group and offers one-to-one support to excluded children.
The group is currently struggling to raise pound;500,000 for a new site, a move forced by the increase in demand for its services from 200 families in 1997 to more than 1,800 today.
Montse, who was diagnosed in Spain when she was 19, does outreach work in schools and colleges. She now lives in London with her husband and has had a child via artificial insemination. "Body Soul trained me and gave me the courage to go public. I tell children my story and that it can happen to anyone; that it's not that easy to transmit HIV and it's nothing to be afraid of. Children are fascinated that I have a partner and a four-year-old child who are not HIV."
Part-time special needs co-ordinator and author Lynda Waterhouse hopes schools will use her teen novel Soul Love to focus on HIV. (It's the second novel inspired by Body Soul. Volunteer Adele Minchin's novel The Beat Goes On was published in 2001.) "Unless we talk about the issue and address the stigma, then we are letting down a whole generation of young people," she says.
HIV in Schools: good practice guide to supporting children infected and affected by HIV can be downloaded (and hard copies requested) at www.ncb.org.ukhiv. The DfES has commissioned a parallel piece of work through Mencap and the Council for Disabled Children about managing all complex health needs (to be published this summer). Body Soul: www.bodyandsoulcharity.org. Soul Love is published by Piccadilly Press, pound;5.99. The Beat Goes On is published by Women's Press, pound;5.99
Who is affected by HIV?
* Of the 40 million people living with HIV and Aids worldwide, nearly 2.2 million are children under 15.
* An estimated 53,000 people are living with HIV in the UK: 34,000 live in London; around 27 per cent are unaware of their status.
* Rates are continuing to climb, with 6,602 diagnosed in 2003, a 20 per cent increase on the previous year.
* In 2003, 1,171 children under 14 were receiving treatment in the UK.
* Women unaware they are infected are unable to benefit from drug interventions that can now reduce the risk of mother-to-child transmission to under 5 per cent.
* Since the Aids epidemic began 22 years ago, 336 children have died in the UK, mostly due to mother-child transmission.
Source:Health Prevention Agency and the UN