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Navigating school with EB

A group of two adults and two children sit on a low wall outdoors. An adult in a blue shirt kneels, showing them an open booklet. They are engaged and smiling, surrounded by trees. A group of two adults and two children sit on a low wall outdoors. An adult in a blue shirt kneels, showing them an open booklet. They are engaged and smiling, surrounded by trees.
A family of members talk to DEBRA staff.

We’re here to provide guidance on navigating the education system in England, Scotland, Wales, and Northern Ireland for children with EB. This page will offer clarity on what support is available at each stage of the education system, how we can help you, and information on specific agencies that will be able to support you as well (please note that this may differ throughout the UK).

The DEBRA EB Community Support Team can always support you through the process of transitioning through different levels of education. We’re only a call away Monday-Friday 9am-5pm on 01344 771961 (option 1). Outside of these hours you can email us at communitysupport@debra.org.uk or leave a message and we will get back to you as soon as possible to help however we can. 

 

Contents 
  1. Getting support from Special Educational Needs (SEN) services. Information on getting support from SEN services at each stage of education, and how your EB Community Support Team manager can help.
  2. Childcare from 0-5 years. Information on the different childcare options that are available at this stage and securing the support your child will need.
  3. Primary school (aged 4/5-11). Guidance on transitioning to primary school and getting the right support during your child’s time there.
  4. Secondary school (aged 11-16 years). Guidance on transitioning to secondary school and getting the right support during your child’s time there.
  5. Check list and our practical guide for schools. A check list to help you keep track of things to do when transitioning to a new school, as well as our practical guide to support members at school.
  6. Tips from a DEBRA UK member Some suggestions from one of our members that may be useful in helping your child get the right care at school.

Getting support from Special Educational Needs (SEN) services 

At the point of going to look at any education provision for your child, we suggest that you discuss your child’s EB with the SEN team in the setting. Please contact your DEBRA EB Community Support Team manager and they will be happy to accompany you on these visits. They will be able to offer some background on EB as a whole and explain how it can affect children at school. They can also offer support to the setting in terms of care plans and risk assessments, and offer you emotional support throughout. 

You may also want to contact the National Portage Service, if it’s available in your area. Portage is a home-visiting educational service that supports families and pre-school children with special educational needs and disabilities. 

The “Special Educational Needs and Disability Code of Practice: 0-25 years” may also be helpful. This document offers statutory guidance to organisations that work with children and young people who have special educational needs or disabilities. 

Childcare from 0-5 years 

Katie and her son Jamie who lives with generalised severe epidermolysis bullosa simplex (EBS)
Katie and her son Jamie, who lives with generalised severe epidermolysis bullosa simplex (EBS)

Any child in the UK is entitled to start a childcare/education provision as soon as parents/carers deem it’s appropriate for the family. School is not mandatory until the school term after a child’s 5th birthday. 

Before your child starts school, there are a few options you can consider, as well as free childcare you can access when they are 3-4 years old. If you need support at any stage to help ensure your child’s EB is cared for in the right way, please do get in touch with your EB Community Support Team manager. 

Start by deciding which provision is best for you and your child. There are a few different options before your child reaches statutory school age: 

Child minder – childcare undertaken in someone else’s home. The child minder must be Ofsted registered. Child minders fall in line with Government funding when you are entitled to claim this support for your child. 

Nursery – childcare undertaken in a care/education setting. Children can attend from three months old in some settings. The nursery must be Ofsted registered. Nurseries fall in line with Government funding when you are entitled to claim this support for your child. 

Pre-school – for children from between 2 years old and school age. The school must be Ofsted registered. Pre-schools fall in line with Government funding when you are entitled to claim this support for your child. 

Nanny – someone who undertakes childcare in your home. If you get childcare vouchers through your workplace and you want to use these with a nanny, your nanny needs to be Ofsted registered. A nanny does not fall in line with any Government funding. 

 

You can book a meeting with them to view the setting. Please invite your EB Community Support Team manager to this meeting if you would like their support. 

Please also bear in mind that you may end up visiting a number of settings before finding the one you feel is suitable for your child. Take your time to find what is best for your child. 

 

Contact the EB healthcare team at your specialist EB centre, as they will be able to offer some training to the setting so they can better support your child’s needs. 

If you aren’t already under the care of one of the specialist EB centres, our EB Community Support Team can help by writing you a referral letter. 

 

Prior to the start date, we would suggest you get a care plan in place, as well as an individual risk assessment (you can find more information about care plans and assessments on our website). The setting may have their own. This should be done with parents/carers, setting staff, and your EB Community Support Team manager if you’d like them to support you at this point. 

 

An EHCP may be needed if your child needs more support than their childcare setting or school provides (you can find out more about EHCP’s on the Government website). 

You can begin the process of discussing this before your child starts at a setting. However, as they won’t have been in any education setting at this point, the application for an EHCP would be led by parents/carers and it can be very challenging for it to be successful in these circumstances. 

Please note that not all children require an EHCP if their needs can be met by the education provision with their resources, care plans, and risk assessment. 

 

If the setting decides that your child does need an EHCP/Co-ordinated Support Plan (CSP)/Individual Development Plan (IDP)/Statement, they will start this process and seek support from parents/carers. 

If you need further independent support, there are a few organisations and charities that can help you depending on where you live: 

England 

Independent Provider of Special Education Advice (IPSEA) – The leading charity in special educational needs and disabilities (SEND) law in England. IPSEA can help you navigate the SEND system and ensure your child gets the education they are legally entitled to. 

Scotland 

Enquire – The Scottish advice service that shares information and guidance about children’s rights to additional support for learning. 

Wales 

Snap Cymru – Snap Cymru offers free information, advice and support for children and young people with special educational needs, and aims to advance the education of people in Wales and support their inclusion. 

Northern Ireland – Local authorities in Northern Ireland don’t issue EHCPs. In Northern Ireland, you can get a Statement of Special Educational Needs.

 

All parents of children aged 3-4 can access 15 hours of free childcare a week, regardless of how much you earn or how many hours you work. You can find out more on The Education Hub on the Government website, as well as information to check if you’re eligible to receive 30 hours of free childcare if you’re working. 

If your child is aged 3-4, you don’t need to apply for the free 15 hours of care as your childcare provider will do this for you automatically. You will just need to show them a copy of your child’s birth certificate, and you’ll also have to sign a declaration form. You can talk to your childcare provider to find out more and get this set up. 

 

Primary school for children with EB (aged 4/5-11 years)

Two children with EB smile and gesture excitedly while sitting on the floor against a dark background. Both have visible red marks on their arms and legs.
Young members living with EB.

It’s best to get prepared for the transition to primary school as early as possible, to make sure the right EB school support is put in place for your child. As you start to get ready for school, we recommend that you consider the following steps: 

If your child is already in a pre-school, start talking with the primary school staff 12–18 months before the transition will be taking place. 

 

If your child is not in a pre-school when you go and visit primary schools, ask to speak with the Special Educational Needs Co-ordinators (SENCO) in the schools that you view and have a discussion with them about your child’s needs. 

 

You should also speak to the EB team at your specialist EB centre, who can offer online training dates for more in–depth knowledge and they will be able to offer some specific in–person training if required. 

 

Your EB Community Support Team manager will be happy to support you through the transition process. They can attend meetings, view schools, and provide some basic training on EB with the primary school staff once you have your school place. 

 

If your child does not have an EHCP/Co-ordinated Support Plan (CSP)/Individual Development Plan (IDP)/Statement, the primary school will assess this once they are attending. The school will then decide whether they feel that this is required to meet your child’s needs. 

Please note that a school is legally required to provide support for your child’s medical needs under section 100 of the Children and Families Act 2014. 

 

Once your child is at primary school, there are ways to help them transition between year groups too. Before a new school year starts, if your child will be having a new class teacher, it’s beneficial to have a transition meeting with the new class teacher before this. 

The teaching staff would also be welcome to attend the EB training provided by the EB teams each new school year if they feel that this is required. 

 

Secondary school for children with EB (aged 11-16 years) 

Two people stand outside, one wearing a hijab and sunglasses, the other in a jacket.
Two teenage DEBRA UK members

We know that transitioning to secondary school can be daunting and comes with a new set of challenges for any child, especially someone living with EB. There is support available to make this transition as easy as possible though, and our EB Community Support Team is always here to work with the school and advocate for your child’s needs. 

For more guidance on higher education (aged 16+), please refer to our transition webpage.

As is the case with all transitions, we suggest you prepare for as early as possible for the move to secondary school. Go and view as many prospective schools as you can with your child. They will need to feel that the school is physically manageable for them in terms of size and getting around. All schools should also be wheelchair accessible. As the Government website confirms regarding disability rights, schools must make buildings accessible for their disabled pupils. 

 

 

Your EB team will be able to offer online training for the new school. If your EB team feels that a higher level of training is required for the school, they will discuss this with you.  

Your EB Community Support Team manager will be able to support you in meetings with the new school, advocate the needs of your child, and have as much contact with the school as required. 

For further information on higher education including college and university, please refer to the Transition page.  

 

Check list and our practical guide for schools 

Here’s a check list to help you keep track of things to do when transitioning to a new school, as well as our practical guide to support members at school. This guide covers everything from how to lift children with EB to practical advice on getting involved with PE and games. 

Please note that not all of these check list points will be relevant to all situations. 

  • Contacted CST manager  
  • Contacted EB team  
  • Risk assessment  
  • Care plan 
  • Read through SEN code of practice 
  • Looked at DEBRA UK practical guide 
  • Considered footwear and clothing  
  • Prepared EB first aid kit for setting 
  • Considered an EHCP 

Tips from a DEBRA UK member  

Here are some tips from one of our members about things to expect and suggestions that may be useful to help your child get the right care at school: 

Take more time, additional settling in days, days where you stay in the setting with your child for longer than their standard suggestion are helpful in making sure everyone is comfortable.

EB and the care involved varies from person to person and your child’s care is unique. It’s worthwhile listing all the care that the setting will be required to undertake to help you understand and track the settings readiness as a simple checklist. You have all the knowledge of the day-to-day care, so meeting the setting and talking them through this and expectations will help begin the process. This can also include key things to watch out for, and your parameters when it comes to being concerned about your child. Once they have an understanding what it is you do, they will likely come back with more detailed questions and this will help with continuing the transition and beginning a helpful dialogue.

Include as many of the settings staff as possible to ensure everyone has at least a basic knowledge of EB and your child. Although the setting will likely do this, setting this as an expectation from the start is helpful.

‘Why?’ – Explaining the reasoning behind the care is a good way of assisting the new setting in understand the context of the care, which helps with understanding the importance of them being thorough and knowledgeable. Following this step before the setting attends any formal training will help them understand which parts apply to your child and which parts may not.

Taking pictures of the medication and supplies alongside a short summary of what it is used for will assist the setting in getting used to the new items, providing this a printout can help as a visual aid.

“Practicing popping blisters with bubble wrap is a great way to help those who have never done so get used to the ‘mechanics’ behind doing this.”

The setting will likely provide an information sheet for you to complete about your child and your home, using this to explain what life looks like day to day yet also their activities will give the school and good guidance of your hopes on what the setting can provide and encourage.

Your hopes and wishes for what this new setting will look like for your child and being explicit in your hopes can assist the new setting in understanding exactly what your child can do and is capable of and will avoid assumptions about what they can and cannot do

Talking and planning with your child and involving them in the transition will mean they are able to become involved too. Simple tasks such as putting on a plaster or beginning the process of learning to spot blisters means they feel more in control and empowered when around new people who are taking on their care.

Although sometimes difficult, images of wounds and how you have cared for these, to give examples to the setting are helpful, this allows the setting to understand what’s involved, yet also to become comfortable with how EB skin reacts differently, so they can learn what your child’s “normal” looks like.

Using other learning tools to help with all ages, such as books about EB will help children in the setting to also understand in a way that is suitable for their age.