Should I tell the school?
If a child or young person you are parent/carer for does not have HIV, the school may still be able to help you and support your child when you are not feeling well. Many schools have experience of supporting children whose parents have a long-term health condition. A school that knows about HIV in the family could be more understanding and supportive.
If a child or young person you are parent/carer for has HIV, the school will be able to support them if they have poor health, and give them any additional support they may need. It may be that a child misses school or doesn’t complete their homework because of how HIV is affecting them, and this may worry the school at times. A school that knows about HIV can be more flexible to ensure that children don’t miss out on their education.
If the school knows a child is living with HIV and is taking treatments, they will be able to manage this properly on school trips. (See Travel and Sleepovers).
A child may benefit from having someone else outside their family who they can talk to when they need to. Teachers can be very important people in children’s lives.
The more schools know about children living in families affected by HIV and what kind of support they need, the better educated they will become about HIV. This can have a very positive effect, not only on the awareness in their school, but also by helping to build better understanding in the wider population.
There are a few examples of schools that have not reacted well when they have found out about HIV in a child’s family. Often this has been because the information has been gained from another source and not shared in a formal conversation with the parent or carer.
Telling a school can be worrying for parents/carers who fear that the information will not be kept within the school and that parents/carers and other people in their local community may find out.
It is important that you are very clear on your rights as a person living with HIV and for you to feel you have control over the information shared.
Chiva worked with many partners from education and the charity sector to update the original NCB HIV in Schools guidance and the updated guidance was completed in March 2022. The guidance contains everything you and the school need to know about your rights.
Local education authorities must find a free school place for every child who is of school age, so you have a right to have your child in education. The Equality Act 2010 explicitly offers people living with HIV in England, Scotland and Wales protection from discrimination.
This means it is illegal to discriminate against people living with HIV. If the school were to treat you or your child less favourably than any other parents/carers and children in the school – after they know you are living with HIV – they would be breaking the law. If this happened, you could seek advice from a lawyer and the school could be taken to court and charged with discrimination under this act.
If a child in the school is living with HIV, teachers need to understand that this poses no risk to others and that they should treat all medical information confidentially.
Talking to the school
If you decide you do want to talk to the school about HIV in your family, you may want to talk it through first with a nurse or support service. They can help you prepare what you are going to say. Chiva are also happy to support parents and carers with talking to school, get in touch and we will identify a staff member who can support you with this
Think about the following things:
- Decide exactly what you want from this meeting. Make a list on a piece of paper and take it with you.
- Consider if there is anyone you want to go to the school with you. This could be a nurse or someone from a support service if you have been speaking to someone, or a family member or friend. Or you may prefer to go on your own.
- You need to decide who in the school you want to know. You are probably going to need to start with the headteacher as they are the person with lead responsibility. Realistically, no more than two members of staff need to know. One being the headteacher and the other, a designated staff member, ideally chosen by the pupil and parent/carer, who can oversee the child’s education and pastoral care. If your school has a school nurse based there you may want to consider telling them.
- You need to be clear that they are the only people who will have this information and that only you can decide if more people are told.
- Explain how important confidentiality is for you, and how you need to leave their office knowing that they will keep the information you have given them safe. You could use a confidentiality agreement to help you make this very clear.
- Schools keep computer records on all pupils, so you need to decide whether you are happy for this information to go on that record. If you are not, you must state this clearly. If you are, you need to ask them who can access the records. You could suggest HIV is recorded as a “chronic health problem”, but not named.
- Find out what will happen to this information when the child leaves this school. You need to make it clear that the school should not pass this information on, as you will want to plan how you share this information with the next school/college.
- Decide what you want to happen next. You could ask that once a year, all those who know, meet up to check everything is going well and talk through any potential problems.
The headteacher may want to learn more about HIV to understand better how to support your child. You can suggest they look at the HIV in Schools guidance, found under the professionals section of this website. Ask Chiva to send you a copy in the post if you would like to take it with you.