Support at school with EB

The majority of children and young people living with EB are able to attend mainstream schools. Many people within the EB Community have made long-lasting friendships, developed their independence and confidence, as well as enjoyed academic success from their time at school and beyond.

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


Levels of support

There are three levels of support available at school for your child or young person:

  • Individual Health Care Plan (IHCP) – a plan outlining the type and dose of medication or treatment your child or young person may require during the school day
  • Special Educational Needs (SEN)­ support (which mainstream state schools must provide) – additional support provided by the school for a child or young person with a disability
  • Education, Health and Care (EHC) Plan (sometimes called an EHCP) – for when SEN support provided by the school is not enough for your child or young person to get the support they need

The level of support that your child or young person requires is not dependent on their EB type but on how it impacts them and their learning. DEBRA’s EB Community Support Team can help you and your school determine the requirements and create plans for all levels of support.

Level of Support Type of EB Example of support provided Notes
IHCP Milder symptoms of EB, such as EB Simplex (EBS) Paracetamol kept in school and administered for pain relief (see IHCP template). Begin the discussion about the ICHP when you inform your child or young person’s educational setting about their EB.
SEN Milder to moderate EB symptoms, such as EBS or mild Dystrophic EB (DEB)

Paracetamol kept in school and administered for pain relief.

Laptop provided for when fingers become blistered and writing is difficult.

Arrangements made in advance for periods of absence due to EB.

Look at the school’s SEN policy, with particular attention to how the school identifies and assesses SEN. Collate evidence of your child or young person’s needs and list any concerns you have about their learning, development and behaviour at school.
EHCP Moderate to severe symptoms of EB, such as Recessive Dystrophic EB (RDEB) or Junctional EB (JEB) Comprehensive plan (developed with EB clinical team, healthcare and other professionals) to meet educational, health and social care needs (such as one-to-one support provided during the school day, additional mentoring or access to extra-curricular activities). EHCP assessment can be requested by the school or parent (or young person over 16).

Visit the website for more information on Supporting pupils with medical conditions at school.


Individual Health Care Plans (IHCP)

If your child or young person needs medication or treatment during the school day, this should be documented in an Individual Health Care plan (IHCP; different to an EHCP). This plan can include information such as when to give regular pain relief and what dosage through to short-term courses of antibiotics for infection. 

It is important that schools know when intervention may be required, so an IHCP may state ‘when the child or young person is unable to play outside, pain relief can be offered (state dose/frequency). This is important for younger children who may be unable to express themselves clearly but can mean the difference between whether or not the child is able to join in with their peers.

Individual Health Care Plans are developed in partnership between the school, parents, pupils and the relevant healthcare professional who can advise on a child or young person's case. Your child’s school may not call it an IHCP, but the governing body must ensure that arrangements are in place to support pupils with medical conditions. The DEBRA EB Community Support Manager can also help liaise with the school.

The aim of an IHCP is to ensure that schools know how to support your child or young person effectively and to provide clarity about what needs to be done, when and by whom. Specifically, for people living with EB, this plan should include agreeing what will happen if a child or young person develops a blister that needs lancing during the school day.

Your child or young person’s school may have their own preferred IHCP template; however, the information will be similar to these two examples written by the DEBRA EB Community Support Team:

If you live in England, you should familiarise yourself with the guidance on Supporting pupils at school with medical conditions, which is issued to schools by the Department of Education.

Steps to take to create an IHCP with the school

  1. Inform the school that your child or young person has EB. Show your child or young person’s school the What is EB? Infographic and relevant EB literature to help explain what EB is and the impact it has on your child or young person. Request an IHCP for your child or young person so that they have the relevant support at school.
  2. School staff should arrange a meeting to discuss your child or young person’s situation and needs and agree an IHCP. Download the blank IHCP template to complete with your support manager and school.
  3. The school should identify any training needs for staff. The parents and child may wish to be present to support the school with any training (e.g. how to lance blisters).
  4. Agree a follow-up meeting with the school to review the training needs and identify what is and isn’t working well according to the IHCP.
  5. Review the IHCP annually or when a child or young person’s needs change. The start of a new school year is a good time of year to review with the new class teacher and other new school staff.


Special Educational Needs (SEN) Support

Section 20 of the Children and Families Act 2014 says a child has Special Educational Needs (SEN) if: “they have a learning difficulty or disability which calls for special educational provision to be made for him or her”.

If you are unsure whether your child or young person qualifies for SEN support, consider the following two questions:

Does my child with EB have a learning difficulty or disability?

Someone has a disability if they have a physical or mental impairment which has a substantial and long-term adverse effect on their ability to carry out day-to-day activities. A child or young person has a learning difficulty or disability if:

  • they have significantly greater difficulty in learning than the majority of others of the same age, or
  • they have a disability which makes it difficult for them to use the facilities normally provided for others of the same age in mainstream schools or post-16 institutions.

For children with EB, this may look like when they can’t keep up with writing in lessons due to blisters on their hands; if they are in pain or suffering fatigue and can’t concentrate in lessons or have to stay at home; or if they need adaptations such as padded ergonomic chairs and soft grip pencils. Many children with mild to moderate EB may need additional support through SEN provision.

Does that learning difficulty or disability call for special educational provision to be made?

Special educational provision is any educational or training provision that is additional to, or different from, that which is made generally for other children or young people of the same age. This is a wide definition and could cover a wide range of things. For example, for children or young people with EB:

  • a laptop with voice recognition software and individual support on how to use it
  • having materials provided in a larger font
  • needing one-to-one support
  • sessions with a physiotherapist and training for teachers
  • adaptations at home and school to make personal care easier

When your child can get SEN support

SEN support is available at all levels of education, from nursery to further education. The school may identify your child or young person’s special educational needs. Legally, they must contact you about what support is available. Your GP or another professional may also refer your child for support.

You can ask for SEN support when your child:

  • starts a new school or nursery
  • is already at school or nursery

You should be involved throughout the SEN process and receive updates; young people aged 16 to 25 will also have a say in their support.

The first person to talk to about your child or young person’s needs is their headteacher and the Special Educational Needs Co-ordinator (SENCO). All schools have a SENCO. It is the SENCO’s job to work with teachers, parents and health professionals to meet pupils’ special educational needs.

Ask for an appointment with the SENCO. Explain why your child needs extra support. If the school is unaware of your child’s needs, check the school’s SEN policy and ask for a SEN assessment.

How to apply for SEN support

Children under 5

SEN support for children under 5 includes:

  • a written progress check when your child is 2 years old
  • a child health visitor carrying out a health check for your child if they’re aged 2 to 3
  • a written assessment in the summer term of your child’s first year of primary school
  • making reasonable adjustments for disabled children, such as providing aids (e.g. tactile signs)

Nurseries, playgroups and childminders registered with Ofsted follow the Early Years Foundation Stage (EYFS) framework. The framework makes sure that there is support in place for children with Special Educational Needs and Disability (SEND).

Talk to a doctor or health adviser if you think your child has SEND but they do not go to a nursery, playgroup or childminder. They’ll tell you what support options are available.

Children between 5 and 15

Talk to the teacher or SENCO if you think your child needs:

  • a special learning programme
  • extra help from a teacher or assistant
  • to work in a smaller group
  • observation in class or at break    
  • help taking part in class activities
  • extra encouragement in their learning (e.g. to ask questions or to try something they find difficult)
  • help communicating with other children
  • support with physical or personal care difficulties (e.g. eating, getting around school safely or using the toilet)

Young people aged 16 or over in further education

Contact the college before your child or young person starts further education to make sure that they can meet your child’s needs. The college and your local authority will talk to your child about the support they need.

Visit the website for government guidance on Children with special educational needs and disabilities (SEND).


Education and Health Care Plans (EHCP)

The EHCP is a legal document that sets out the education, healthcare and social care needs of a child or young person for whom extra support is needed in school, beyond that which the school can provide. The special educational provision described in an EHCP plan must be provided by the child or young person’s local authority (LA). The EHCP was formerly known as a ‘statement of special educational needs’.

Children with an EHCP may be entitled to extra one-to-one support in school (though not necessarily full-time) and will have outside agencies involved in their support (e.g. physiotherapists, behavioural experts or sensory impairment teachers). The EHCP can also give parents and young people more choice about which school or other setting the child or young person can attend.

An EHCP plan can only be issued after a child or young person has gone through the process of an Education, Health and Care needs assessment.

Who should have an EHCP?

An EHCP is for any child or young person that has a significant and complex Special Educational Need or Disability (SEND), and is required when a child or young person’s needs cannot be met by the usual support that is available to them in their school or setting.

Many children and young people with SEND receive support in their school or setting without an EHCP; however, their support would come from resources already available within school, which is called SEN support. Following SEN support, some children or young person’s needs may be deemed significant and complex and, therefore, require an EHC assessment by the Local Authority.

Many children and young people living with moderate to severe EB have an EHCP to support them through mainstream education. Some of the support provided includes training for the school staff, one-to-one support for the child (e.g. supervision at lunchtimes if there is a choking risk, through the school day to keep the child safe) and aids and equipment. Some children and young people living with EB also have other conditions and the combined needs are significant to qualify for additional help an EHCP.

How long can a child or young person receive an EHCP?

An EHCP should provide support from birth up to the age of 25 in order to support with further education, training and support into the workplace.

If a young person is in or beyond Year 9, the EHCP must set out the provision to support the young person in preparing for adulthood and independent living.

How can parents or carers receive an EHCP for their child or young person?

Parents/Carers can contact the school directly to request an EHC plan or their LA to ask for an EHC assessment for their child or young person. At this point, the LA will review all evidence on a panel and make a decision on whether or not to assess your child or young person. If a decision is made to assess, at the end of that assessment period the LA will decide whether to issue an EHCP.

Requesting an ECHP assessment

We have created a template letter that can be used to request an ECHP assessment if the school doesn’t apply for the EHC plan. If you choose to use this template, all of the parts of this letter in bold or highlighted will need to be changed or deleted so that they are relevant to your situation.

Appealing a decision

When the LA makes certain decisions about the education and/or training of a child or young person with SEN, there is a right of appeal to the First-tier Tribunal (SEND Tribunal).

To be able to appeal, you must be a parent or a young person over the age of 16. In education law ‘parent’ means you are either a birth parent, have acquired parental responsibility or have care of the child (e.g. a foster parent or grandparent with whom the child lives).

If the decision concerns a child, it is the parent who has the right of appeal. If the decision concerns a young person, then it is the young person who has the right of appeal.

When can I appeal?

You can bring an appeal to the SEND Tribunal if an LA:

  • refuses to carry out an EHC needs assessment or a re-assessment
  • refuses to issue an EHCP
  • issues or amends an EHCP but you disagree with any or all of Section B (special educational needs), Section F (special educational provision) or Section I (placement)
  • decides not to amend an EHCP after an annual review
  • decides to cease to maintain the EHCP at any point

From April 2018, parents and young people will also have the right to appeal against the health and social care sections of the plan (Sections C, D, G and H).

Requesting an appeal/re-assessment

We have created a template letter that can be used to request an ECH assessment. If you choose to use this template, all of the parts of this letter in bold or highlighted will need to be changed or deleted so that they are relevant to your situation.

Visit the IPSEA website for more information, including information on how to change an EHCP, appealing to the SEND tribunal.


Useful resources

DEBRA – information about EB (leaflets for schools)

Other resources

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