XP information for teachers

XP is a rare, genetic (inherited) condition. The body cannot repair skin damage caused by ultraviolet radiation (UVR) from sunlight.

Children with XP are more likely to get:

• sunburnt
• abnormal freckles on skin that is exposed to daylight
• skin cancers if they do not protect themselves from UVR 
• eye problems 
• problems with the nerves or brain (in some people)

Children with XP need to be kept away from all unprotected sources of UVR. If this is not possible, they need to wear full UVR protective clothes and put on sunscreen regularly.

It's important to make the school environment safer and put support in place. You should do this before a child with XP joins the school. You need to:

• identify risks and make changes to the school environment
• understand the child's needs, and arrange adjustments and support
• talk to other children about XP

To understand more about how XP affects a child coming to your school, talk to their parents before they start. For more information about XP, you can also talk to an XP clinical nurse specialist (CNS), the child’s consultant, the local community nurse or the XP Support Group. 

Environmental risks for children with XP

Children with XP need to be kept away from all unprotected sources of UVR in their environment. This includes windows and door panels (high risk) and light bulbs (possible risk).

High risk: windows and door panels

UVR can travel through some window glass.

A UVR protective window film can be put onto windows. This is clear and does not affect the light in the room. 

Some windows have this filter built-in. You can find out if there is a filter by contacting the manufacturer or testing the window with a UV meter.

If you cannot cover the glass with a protective film, the child should sit away from the source. This lowers the risk of damage from UVR. Drawing curtains or pulling blinds on unprotected windows reduces UVR levels.

Open windows let in more UVR, so keep them closed as much as possible. If the classroom is at risk of overheating, think about getting air conditioning or fans.

Possible risk: light bulbs

Some light bulbs produce UVR. In general, the further away a person is from the bulb, the lower the risk. Incandescent bulbs (which heat a wire until it glows) and LED bulbs are a low risk.

Compact fluorescent and fluorescent strips are a higher risk. It is best to cover these with a protective sleeve or use the type in a protective case. Avoid halogen bulbs.

The XP CNS can visit your school and check the UVR risk by using a UV meter.

Low risk

Computers, tablets, photocopiers and white boards are low risk. You do not need to make any changes to them.

Before a child joins the school

If they have the right support, children with XP can go to school with other children of their own age. However, it's important to plan and make any changes that are needed to the school before they join.

When they are near any unprotected source of UVR, children with XP need to wear sunscreen, a visor (full covering over the face), gloves, long sleeves and a hat.

Some children with XP might need an education, health and care (EHC) plan. 

You can use our checklist to take all appropriate actions to protect a child before they start school.

Arrange a visit from the XP nurse

It might help to have a visit from an XP nurse to find out more about the condition. The nurse can recommend any changes that are needed before the child starts school.

If you would like an XP nurse to visit the school and speak to staff, contact the child’s XP clinical nurse specialist (CNS). They can also give you advice over the phone.

Make the school environment safe 

You need to plan for the child to join in lessons, away from possible sources of UVR.

It is helpful to walk around the building with the child's timetable. You can then identify any risks. A UV meter measures the levels of UVR. The XP CNS can discuss this with you. 

You might want to consider changing classrooms or timetables to avoid possible UVR exposure.

Getting to and from school

Some children with XP qualify for a school taxi to the school door. This can help to limit their time outside. 

Ideally, the taxi should have tinted windows or be protected by UV window film. If this is not possible, the child needs to wear full UV protective clothes.

If a parent drives the child to school, allowing them to park near the school entrance limits the child's UVR exposure.

Sunscreen

Children with XP need to put on sunscreen regularly. This should have a high sun protection factor (SPF) of at least 50.

Most young children need help putting sunscreen on all exposed areas of skin. We recommend that they put on sunscreen at least 2 times during the school day. The child’s parents should give you the sunscreen and tell you about their routine. 

You need to plan:

• where you will keep the sunscreen
• who will put the sunscreen on the child during the school day
• where this might be done to give the child privacy

As the child gets older, they might want to put on their own sunscreen with supervision as needed. Having a mirror might make this easier for them.

Read more about wearing sunscreen and XP.

Protective clothes

Make sure you know where the child’s UVR protective clothes are at all times. This is especially important in case there is a fire or fire drill. The child needs to stay protected if they go outside.

During fire drills or alarms, make sure the child has a safe place to wait. It is important that they are not exposed to UVR while outside. 

The child can only remove their visor, gloves and hat when they are away from any source of UVR.

Read more information about UVR protective clothes. 

Planning playtime and physical education (PE)

It can be challenging to balance the child’s need to exercise and socialise, with the need to keep away from UVR. During daylight, they need to wear UVR protective clothes. 

You could try the following:

• Give access to indoor space during break time, where the child has enough room to run and play with friends.
• Provide a safe outdoor play space protected from daylight (for example, a shaded area in the playground). 
• Have PE lessons indoors if possible.
• Arrange PE lessons for the end or beginning of the day when UVR levels are usually lower.
• Make sure that the child is totally covered if they are outdoors during PE. This includes wearing tracksuit bottoms, long-sleeved tops, gloves, a hat and a visor. Be aware that the child might get hot and thirsty before the other children.

School trips

A child with XP can go on school trips if you plan them in advance. Talk to the child’s parents about the trip and think about ways to minimise UVR exposure. 

Coaches need to have blinds or curtains, which you can close if needed.

Think about the time of day and the length of time that the child will be outside. Then plan any extra precautions that might be needed.

Remember that the child needs to wear UV protective clothes and put on sunscreen regularly.

Talking to other children about XP

It is natural for other children to be curious about why a child with XP needs to be protected from UVR. They may have questions when they see the child wearing a hat and visor.

A simple explanation is usually enough. Be aware of the potential for bullying and take appropriate action if needed.

Taking time off school

The National XP Service runs a clinic in London. Children with XP are asked to go the clinic at least one time each year. To do this, the child might need to take a day off school. The child will also have hospital appointments. 

If any of this time off affects their school work or behaviour, please tell the XP CNS.