Starting school with EB support

Many children within the EB Community have enjoyed learning and making friends at school, done well academically, gone on to University and/or built successful careers. School is an opportunity for children living with EB to become more independent and make their own decisions about what they can and can’t do.

If you need support, contact our DEBRA EB Community Support Team on 01344 771961 and select Option 1.


A new milestone

Starting school is a milestone moment but you may worry about how your child living with EB can be kept safe in a school environment. Many parents, legal guardians and carers may be leaving their child in the care of others for the first time. You need to be reassured that your child’s chosen school will support them to thrive and be included whilst also being aware of the additional challenges of living with EB.

Families where there is a child (or children) living with EB may find it difficult in the beginning to part and allow the child to become more independent. However, the structure, routine and sense of normality and belonging really helped their child developmentally but also emotionally and socially.


Early learning options: 0-5 years of age

Before a child begins primary school, you will need to decide whether you want your child to be cared for in a group setting (e.g. nursery or pre-school) or other setting (e.g. childminder). This decision is individual to each family and their set of circumstances. Your Local Authority, Family Information Service or Local Offer will be able to provide details of what is available in your area.

Some questions that may help you consider the best option for your family:

  • Can they meet any provision required for your child’s EB?
  • What is the journey to and from?
  • What is the environment – space and layout for preventing bumping/numbers of children who attend, etc.?
  • What are the long term school plans? Some families feel transition to primary school may be easier if you attended a pre-school attached to a particular primary school (i.e. awareness of EB, friends often move to the same school, etc.).
  • What learning approach/ethos fits your child (e.g. learning through play, child-led, good curriculum, more structured approach)?
  • Does it fit in with any commitments - work or other children to pick up/drop off?

All 3 and 4-year-olds are entitled to 15 hours of free education for 38 weeks of the year. Some 2-year-olds (even if they have an education, health and care plan (EHCP) or receive Disability Living Allowance (DLA)) are also entitled to 15 hours of free education. Visit the website to learn more free childcare schemes. You can also apply for direct payments from your local council to help pay for childcare.

If you choose to apply for a pre-school or nursery, you should visit the school of your choice and follow their application procedures. For people living in England or Wales, visit the website to find a nursery school place near you.

Your child’s EB specialist clinical team or DEBRA Community Support Manager can provide information on EB and additional support to work with the school, which can include talking with any childcare provider regarding adjustments and concerns, explaining to staff your child’s needs relating to EB, as well as helping to create your child’s health and care plan.


Primary school

For some families, choosing a primary school may be the first experience of early years education and it can seem daunting. Will the school change my child’s dressings? Will they understand the differing needs of my child when it comes to Physical Education? Will other children make fun of my child’s bandages? There are lots of things to consider.

The Department for Education statutory guidance states “Pupils at school with medical conditions should be properly supported so that they have full access to education, including school trips and physical education”. Schools are advised to work with health professionals and other support services so that children with medical conditions have equal access to the same opportunities as their peers.

The DEBRA EB Community Support Team can liaise with the school to help them understand more about EB and what support they can put in place for your child. We have also written a guide for schools & teachers so that they can better understand some of the basic, as well as more complex, needs of children and young people living with EB – including small adjustments than can have a big impact to help your child with everyday activities.

Visiting potential schools

Your Local Authority maintains a published a list of schools, as well as a ‘Local Offer’ detailing additional provisions relevant for children in the area and living with a disability.

When visiting a potential primary school tell them about EB and how it affects your child, and ask them how they would offer support. It might also help to think about some of the following questions and how your child can cope whilst at school:

  • Is the building spacious or overcrowded, affecting the possibility of bumps and falls? Is the school eager to put measures in place to give your child some space if they need it?
  • How far would your child need to walk? If you drive to the school, what is the parking provision? If your child walks to school when they are older, how far would they have to walk?
  • Is the building on one level or are there many steps and stairs to manage? Are there long distances to walk between classrooms and play areas?
  • Is the playground suitable with a quieter area or shaded area available, if needed?
  • Would your child be able to stay indoors with one or two school friends if necessary?
  • Can the school offer emotional support in case your child needs it?
  • Are the school staff and teachers willing to learn about EB and what care your child will need during the school day?
  • How has the school responded to current pupils with additional medical needs?

The Special Educational Needs and Disabilities (SEND) support and welfare provision the school can offer may be a consideration in which school you eventually choose and, therefore, this might be something you explore when visiting potential schools.

When you have chosen a school, you may wish to help the class teacher and other key people within the school learn about EB and your child’s care needs. You should contact your LA Information and Advice Service (IASS) for help.

Working with the school for your child’s needs

If your child’s EB has a significant impact on their health then their EB nurses or other health and social care professionals may already be involved in ensuring your child receives support through an Education, Health and Care Plan (EHCP). Your DEBRA EB Community Support Manager can help you navigate this process and advocate your needs when meeting with health professionals. Visit our support at school page for more information about EHCP and other help.

If your child already receives support in their early learning setting with an Individual Health Care Plan (IHCP), SEND support plan or EHCP, this should be communicated to the primary school at the earliest opportunity.

In addition to health plans, you may need to work with the school so they support your child in other ways. Some of the more common adjustments include:

  • Reduce friction – cushion for chair/floor sitting, allowed different school bag, uniform requirements relaxed
  • Avoid heat – not sat by window or radiator, shaded outdoor space, fan available
  • Help with fine motor skills – use of pen grips, tablets and computers; easy use scissors; extra time to complete tasks
  • Avoid excessive walking/some PE activities – minimise amount, allow extra time, adapt games (e.g. referee, use sponge balls)
  • Avoid being bumped and knocked – playtime initiatives, not being seated where lots of people have to pass by your table

Key staff at your child’s primary school

When your child starts at a new school, you should familiarise yourself with some of the key staff involved in your child’s care:

  • SENCO (special educational needs co-ordinator) – A SENCO’s responsibilities include supporting all students who have additional physical, learning or emotional challenges.
  • Year Lead – Most schools have a member of staff responsible for supporting and overseeing students in particular year groups. If there are any issues regarding education or your child being bullied, always talk to the class teacher first. If the issue is still not resolved then you should usually contact the Year Lead. Always check the behaviour and bullying policies at the school; these can usually be found on the school’s website.
  • School Nurse/Medical Welfare Officer – Normally your first point of contact for any health issues during the school day, the school nurse or medical welfare officer should be made aware of your child’s health needs. It is normally their role to be involved in drafting an individual health care plan.
  • Pastoral care staff – Pastoral care staff look after the welfare of students, supporting students and their families to access learning and with additional home or emotional support. They can help when a child is experiencing bullying or if a child has low attendance. EB is a rare condition and, once they understand more about EB and how it impacts your child specifically, they can help to support you with the condition.

Attending school and practical planning to consider

When your child attends school for the first time, you may want to start to think about what adjustments your child may need in and out of school:

  • Lunch times – Do they need more time to eat? Are school meals suitable/does your child have any mouth issues?
  • Playtimes & PE – Does your child need to limit walking/running to prevent blisters? If your child uses a wheelchair, are they able to use it in the playground area?
  • Uniform – Would your child need to wear non-standard school shoes? Does your child have problems with certain types of clothing rubbing areas affected by EB (e.g. polo shirts)?
  • Bags – Is there a standard bag used by all students at the school? Would your child need to select a bag carefully to avoid friction or have help to carry it?
  • Getting to and from school – How will your child get to/from school, when they are younger and as they start to grow older?

Travel to school

Your child may be eligible for free transport to school depending on the length of the walk, any special needs they have and whether the walk is safe.

If your child cannot walk to school because of their EB, they may be entitled to free school transport – contact your local authority. All children between 5 and 16 qualify for free school transport if they go to their nearest suitable school and live at least:

  • 2 miles from the school (under 8)
  • 3 miles from the school (8 or older)

Some members tell us that their children living with EB use scooters to travel short distances. Depending how EB impacts your child they may also be eligible for a blue badge, which can make pick-up or drop-off at school easier.


Further support

The DEBRA EB Community Support Team works closely with specialist EB nurses and other health and social care professionals to improve the quality of life for people living with EB. The team provides information and support to tackle a wide range of social issues including education – working directly with schools so they better understand the condition, other agencies to provide additional support and families to help with peer support or during times of transition (e.g. changing school).

Your area DEBRA EB Community Support Manager can specifically help with liaising between the school and also advocate for your child’s inclusion in the school by writing a supporting letter explaining their EB. The team can also attend Team around the Child and SEND meetings, as well as help with telling other teachers and children more about EB, with a class talk or school assembly.


Useful resources

DEBRA – information about EB (leaflets for schools)

For a full list of education resources, please visit our resources & toolkit page.