Children with HIV know they must keep quiet about their condition at school. Karen Gold reports
The majority of schools don't know they have a pupil infected with or affected by HIV, because the majority of families don't tell them," says Magda Conway, co-ordinator of the Children and Young People's HIV Network, which is run by the National Children's Bureau.
"The silence that shrouds this disease is so huge. It's not the illness itself that debilitates. It's the silence: the inability of mothers to talk to their children, of children to talk to their siblings, because of the fear of stigma, and of what that might mean to their lives."
And yet 1,000 under-19s are infected with the Human Immunodeficiency Virus in Britain, and more than 10,000 children are affected by its presence in their families.
What springs to mind at the words HIV and Aids? Sex. Orphans in Africa. Bodily fluids. Fear. Tombstones. Those are the most common images, according to HIV experts.
Campaigners say there are four myths that society in general and schools in particular need to dispel. They are:
* HIV and Aids are the same. HIV is a virus. Aids is a disease. (Acquired Immunodeficiency Syndrome). People infected with the virus (generally described as HIV-positive) remain physically healthy, though they can infect others, until the virus has damaged their blood cells to such an extent that they can no longer fight off the infections and malignancies that cause the neurological damage and wasting associated with Aids.
* Catch HIV and you die. Antibiotics and retroviral drugs can slow the virus's progress for more than 20 years; 99 per cent of medically-treated HIV-positive children now survive to healthy, symptom-free adulthood and beyond.
* All contact with HIV is risky. The virus is not robust. It cannot, for example, survive exposure to the open air for even an hour. It cannot be caught from toilet seats or toothbrushes. No child in Britain has ever caught it from fighting in the playground. Non-violent sport and social contact carry no risk, as long as standard first aid procedures are followed. (See Health and Safety box.)
* HIV is a sexually-transmitted disease. It may be passed from mother to child, via birth or breastfeeding. It may be caused by blood transfusions or contact with infected needles.
Sexual transmission may be via heterosexual or homosexual intercourse. HIV and Aids are not defined as sexually transmitted diseases by the Department of Health. (If they were, HIV-positive asylum seekers would be entitled to free NHS treatment, which they currently are not). Nor are they notifiable diseases in law. Neither parents nor medical staff have a legal duty to inform schools that a pupil is infected.
Panic in schools
The panic that sometimes sets in at schools at the mention of HIV is largely related to these myths, says Magda Conway.
"A local education authority officer will ring me. They had a policy meeting, someone mentioned HIV and everyone freaked out, saying, what if there is a child in our school? What shall we do?
"People are afraid of HIV. Understandably: it's horrible and it's infectious. The world is very scared. But most of the fear is due to lack of information and knowledge. Once I've said: 'Don't worry, these are the facts, there is no known case of HIV transmission in a UK school,' then the issue becomes stigma and confidentiality. I say 'You probably do have children with HIV. We think only about 5 per cent of families inform schools their child is HIV-positive. The rest don't because they are too scared.'"
Two years ago, an asylum-seeking family was driven out of a southern town because a child's HIV-positive status became known, says Conway. That story has spread throughout the HIV-positive community. So have the stories about the school secretary spreading knowledge of a child's HIV-positive status; of a teacher saying: "You'll know about this Kylie," during a PSHE lesson on Aids to an infected but previously undisclosed student in front of the class.
There may be 20 schools that preserve utter sensitivity and confidentiality for each one that fails. But horror stories about schools affect families living with HIV, just as heads, teachers and parents hear horror stories about the virus.
Such is the climate of fear that no school was willing to be interviewed, even anonymously, as an example of good practice, for this article.
Fear and secrecy are formidable companions. Children infected or affected by HIV confront the reality of death: their own andor that of their parents, long before their peers. And, unless linked into one of the charitable support networks (see resources below), they confront it alone.
"Once a young person knows their HIV status they will immediately isolate themselves, even if they are not being isolated by others," says Rena Greifinger, policy officer for London-based charity Body and Soul. "They feel helpless. They fear other children will ask questions about their medication: other children watch, they whisper and listen."
Into that mix comes guilt, says Sarah Birtles, social worker at Manchester's Health Through Action project, which is run by Barnado's.
"They often feel desperately disloyal that they can't tell their friends."
Guilt is also triggered from outside. From common playground abuse - "You've got Aids!"; "Your mother's a slag!" - to African andor religious taboos that treat HIV as unnameable, there is fear-inducing cultural pressure on children from all directions.
Even their homes are not havens. "Some communities won't discuss HIV at all," says Rena Greifinger. "One parent may be HIV-positive, the child may be HIV-positive, but the other parent has never been told. Or siblings may not be told. When things come out, the family unit may disintegrate."
What these children need from schools, according to support organisations, is confidentiality, sensitivity, understanding and acceptance. "The worst end of the spectrum," says Magda Conway, "is the head who sends the child home saying: 'You can't come back until we've worked out what we're going to do.' At that point the whole school and the whole community knows, and it's a nightmare."
The reverse are schools that specifically identify themselves as HIV-friendly, she says. They normalise HIV by writing it in their inclusion policies alongside other special needs. "Someone comes in saying: 'I believe there's a child with HIV in the school,' and the head says: 'There may well be: in our statement that this is an inclusive school we include children with HIV.'"
These schools offer HIV training to all staff (NCB runs courses), to dispel myths and ensure sensitive PSHE teaching. They establish a "need to know"
policy, often meaning only the head and one named staff member will be told if a child is HIV-positive. (The closer a school is to its local community, for example, drawing teaching assistants from parents, the riskier widely-shared information among staff becomes.)
A school may suspect that a family or child is living with HIV because of the child's delayed development - infant milestones like walking and talking are late in babies born with the virus, although medication is improving this - or because of his or her medical needs or frequent hospital visits.
In that case, if both policies and sensitive attitudes are in place, it can risk an overture to the family, says Magda Conway. "Staff can do general awareness-raising in the school, and then they can say to the family: 'Is there something you want to talk to us about?' But they have to understand that some parents can't talk to anyone about HIV; they can't even tell the child about it.
"Healthcare workers battle around the child's right to know their own diagnosis; they can reach 13 or 14 and not know."
Sometimes a parent will trust a school or an individual teacher with the child's diagnosis when they have not told the child. School trips may trigger this: medication must be managed and emergency treatment forms signed. Again, schools need the combination of strong confidentiality policies and an accepting atmosphere to manage this. They also need to bring in expertise: health professionals and groups like Body and Soul and Barnado's have experience supporting children and families through the painful disclosure process.
If a school can manage this, says Magda Conway, it can make a big difference. Children's needs for support will vary - the last thing they want is for teachers to say: 'How are you and how's your mum?' in front of their peers. But they may miss school through illness and need academic support; they may face bereavement; they may simply need a bit of extra understanding, and to know there is a named member of staff they can turn to.
"The classic case is the child who is late to school every day, who, when asked about it, says: 'I have to stay home and watch my mum take her tablets because if she doesn't she'll die.' The school cannot make a big deal out of the lateness.
"They can also ring home if there's chicken pox in the school, because to a child with a compromised immune system we are more of a risk to them than they are to us."
Lynn Hill, 22, a health studies degree student and volunteer at Body and Soul, recalls the help she received at school during a period of adolescent confusion. "I used to keep my medication in my pencil case. I was paranoid someone would see it and ask questions. I went to the school nurse and asked her to look after it. At that time I didn't know what I had. I was told by my parents I had sickle cell anaemia.
"The nurse must have known what I was taking them for, but she never said.
Later, when I found out, I went to her and told her I was HIV-positive. She told me she already knew. I was scared, but she said she had this strict rule of confidentiality. That made me feel a bit more as though I could trust her."
Teenagers living with HIV argue passionately that facts about it should be taught both more accurately and more extensively if acceptance in society is ever to be achieved (and the current trend of rising transmission rates reversed).
At the same time, says Max, 17, whose story is told below, they can see the difficulties. "You have to educate society as well as the schools. Because, when a head makes a decision, they have to take into consideration the parents and whether they will accept it."
At present, says Magda Conway, professionals working with affected and infected children and families are torn. They want to trust schools; they want to tell children and families they can trust schools. And yet they simply don't believe they can. "Paediatricians and social workers tend to say to families: 'Don't tell the school.' It's the fear factor. I think in principle schools should know. But in the present climate, I wouldn't advise a family to tell them."
* National Children's Bureau runs school-based and central training and offers advice via the Children and Young People's HIV Network. Publications include: HIV in Schools - a good practice guide; Teaching and learning about HIV, a resource for KS1-4; Talking to Children and Families about living with chronic illness, including HIV.
* Body and Soul runs support groups for children aged 0-19 and families. It publishes a 30-minute video, Spirit of Youth, of HIV-positive teens talking about their experiences (pound;20 incl pp), and a report, Talking to Children and Families about HIV. This month it is launching, A smile is a gift, an awareness campaign. www.bodyandsoulcharity.org
* Health Through Action - tel: 0161 273 2901
* Lesson for Life has curriculum material on HIVAids, focused on, but extending beyond, World Aids Day (December 1). See www.gmfc.org for details.
Health and Safety
No one needs to know whether a child is HIV-positive provided these basic precautions are taken:
* disposable gloves are worn during first aid involving blood or other body fluids
* any splashes of blood onto skin or into moutheyes are immediately washed with copious amounts of water
* all cuts or open wounds are covered with a dressing
* spillages of blood or body fluids are cleaned with bleach solution; soiled waste, such as nappies, is disposed of safely