Information & support Support for you Learning & education Guide for schools & teachers: Supporting a child living with EB Attending school is a huge part of a child’s life. It provides structure and stability, as well as helping children develop crucial social, emotional and behavioural skills. Find out more about how schools and teachers can support a child living with EB. Contents: About this guide What is EB? Children living with EB Must-know information for school staff Transitioning from primary to secondary school Equality and discrimination Further support Useful resources About this guide This is intended to be a guide for schools and teaching staff on the issues to be considered when a child with Epidermolysis Bullosa (EB) is of school age. It is by no means exhaustive and it must be read with the recognition that all children are individuals and their needs, aptitudes and strengths will vary considerably. There are a number of different forms of EB with a wide variation in symptoms and severity. The best guide to an individual child’s needs is the experience of the parent(s) and, where of an age to express a view, the child themself. Your local DEBRA EB Community Support Manager can help provide more information and support to the school, child and parent(s). Above all, children with EB are just that; children who happen to have EB but are, in all other respects, the same as any other child or pupil. As an educational establishment you may well be nervous or cautious of the prospect of a pupil with EB. However, many schools and colleges will have been there before you, shared the same concerns and made it work. The overwhelming majority of children with EB go to mainstream schools and do well. Staff quickly learn the ‘do’s and don’ts’ of looking after a child with EB and it becomes part of daily classroom life, just as the individual needs of every other child in that class are recognised and met. Some children with EB will need extra help in the classroom, others will just need the teacher to be aware of their special situation and plan accordingly. This page gives an overview of some of the issues and makes suggestions about how they can be dealt with. What is EB? Epidermolysis Bullosa or EB for short is categorised as a group of fragile skin conditions, which can cause damage to the skin and other mucosal layers causing them to blister and tear at the slightest touch. Epidermolysis Bullosa is not contagious and there is sadly no cure for this genetic, lifelong condition. EB varies in severity, and sometimes those born with EB have skin so fragile they are called 'butterfly children' – their skin is quite simply as fragile as the wing of a butterfly. Main types of EB EB Simplex (EBS) In these forms of EB blistering may be localised to hands and/or feet, or generalised so that the whole body can be affected. Whilst blistering can be continuous, the skin does heal normally. Blistering may occur in the mouth or throat and, sometimes, a child who is not visibly very affected can be in considerable discomfort internally. These children frequently have a hidden disability – they look perfectly ‘normal’ but face considerable problems of mobility due to the pain of blistered feet. Some children describe the pain as ‘walking on hot coals’. Junctional EB (JEB) This affects about 10% of people with EB and causes lifelong pain and disability. Sadly, some children born with this condition die before they reach school age. Those that survive experience a range of severity. Many children suffer with damage to internal skin areas (e.g. oesophagus, airway and eyes), which all require careful management. Dystrophic EB (DEB) There are various forms of Dystrophic EB. Blistering is more likely to be extensive, both internally and externally, and heal with scarring. The process is cumulative so that the child with Dystrophic EB may have very obvious damage to his or her skin. Fingers may fuse and contract. Feet may be similarly affected. Under their clothing the child may have very extensive blisters that requires a lengthy and painful skin care routine at night and in the morning. Kindler EB Kindler EB (KEB) is a rarer form of EB. Skin blistering can occur at multiple and different levels within the skin, which begins at birth and is generalised with a tendency to affect the extremities. There can be skin discolouration and issues with gums and teeth. Mild/Severe In general, DEB is seen to be more severe than EBS. However, there are forms of EBS which have unusually severe symptoms and forms of DEB where the symptoms are not unduly intrusive. As a consequence, the terms ‘mild’ and ‘severe’ will be used rather than referring to the diagnostic categories. The experience of the parent(s) and the school will soon determine what is relevant to a particular child. More information To learn more about EB, please view this What is EB? infographic and visit the Support for you section of our website to see what additional support is available to people living with EB. Children living with EB Practically every child living with EB may need more time off for appointments (EB specialist centre may be several hours away), operations or have stays in hospital due to infection. The ability to walk, hand function, eyesight and swallowing (due to blisters in the oesophagus) may be affected. Often living with some level of pain children feedback that they don’t always feel their teachers or school staff take them seriously when they are in extreme pain as it is hard for staff the gauge this. There are many pain scoring systems that may help staff and students communicate better. The Wong-Baker faces pain rating scale can be useful. Remember, pain is what the child says that it is and should not be ignored. Skin care At present there is no cure or effective treatment for EB. Current treatment involves protecting the skin from injury and infection and limiting the extent of blisters. All children with EB need skin care which is not required by other children. Families develop a daily routine of inspecting the skin and taking any necessary action. In the mildest forms of the condition this will involve identifying new blisters, bursting these so that the blister fluid can escape and keeping the affected area clean. In the most severe forms, where large areas of the body are affected with numerous new blisters appearing every day, the process will be very time consuming, often taking hours each morning and evening. This may involve soaking off dressings which have stuck to the skin overnight, bursting blisters, bathing the child, drying very gently and applying several layers of different types of dressings. It is not difficult to imagine the stress and pain that a child (and parent) may have experienced before arriving at school in the morning or will face in the evening. However, even the child with very mild EB may be coming to school with a couple of newly burst blisters and several healing ones on the feet which, although not visible in school clothes, will be causing considerable discomfort. Required support Children with more severe EB are likely to have an Education, Health and Care Plan (EHCP) in place and also ongoing support from their EB nurse, local health and social care team and DEBRA EB Community Support Manager. Children with a milder form of EB may need support from the school to ensure that their needs are identified and assessed and that appropriate assistance is put in place. This will involve drafting an Individual Health Care Plan and asking parents to provide an ‘EB First Aid kit” of dressings, pain relief and needles for lancing blisters. The level of help a child needs varies, so it is important to identify this and plan accordingly. The Department of Education guidance on supporting children with medical conditions: https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3 You can also seek guidance from a DEBRA EB Community Support Manager who can help with advising on practical measures, providing information on EB for the teachers (and other children, if requested) and even with small grants for equipment. Must-know information for school staff Blisters and trauma to the skin occurs with minimal friction and sometimes spontaneously. For children who experience EB more mildly this may be localised to hands and feet or areas of friction, such as bag straps. EB can be exacerbated by heat or in warmer weather, but many children will have symptoms all year round. Friction, such as walking and writing, will often result in blisters and discomfort. People with EB need to minimise this friction and, therefore, children may choose to rest before and after school or during school if they experience discomfort or pain. Some children may also be wheelchair users. The inside of the mouth and oesophagus can be affected, as well as some children with EB having dental issues. Some children will find it painful to eat or may take longer to finish a meal. They may also be self-conscious about what they eat or choose softer foods. Another sensitive topic that needs mentioning is the skin around the bottom and genital area. Some children experience constipation and blisters, which they find embarrassing as well as painful. Girls can experience blisters and soreness in their genital area, especially when wearing sanitary pads. Bear this in mind if you find that your pupil with EB spends longer in the loo or needs to be excused more frequently. They may be dealing with issues that they don’t want anyone to know about and will appreciate your sensitivity and discretion! Children with long term health conditions are more likely to require support with their emotional health and children with EB often report incidences of bullying. Books about EB for children & adults Most children report that they find it helpful for the teacher or a Community Support Manager to tell the class a little about the condition, in particular that the condition cannot be caught and is not infectious. There are some story books where the child has EB that may be suitable to read in class or for teaching staff to understand more about EB (some of the books are targeted to adults): 30 Days of Hope for Joy Through a Child's Severe Illness Binky's Time to Fly (3-6 years) Binky’s Time to Fly (4-7 years) Cotton Candy on the Moon (5-12 years) Dear You (young adult) Golden Riders: Part 1 (10-14 years) Living with Epidermolysis Bullosa: A Compilation of Stories Written by Families Touched by EB Common medication & treatment Children with EB may have a variety of special dressings, pain relief and needles to lance blisters. You will need to check your school policy on storage and administration and have a plan in place in case the child needs treatment during the school day. Children with more severe EB may have this provision as part of their EHCP. It is important to remember that ‘normal’ plasters, if applied to children with EB, might damage their skin when removed, so it is important to ensure that emergency wound coverings are available. A medical adhesive remover can be useful to keep at school. Children with less severe EB sometimes find it difficult to ask for help, especially at secondary school where they may not want their peers to know about their EB or the impact it has on them. It might help if a trusted teacher can support the child to discreetly manage their dressings and pain – this will be easier if all teaching staff are aware of the issues. Presenting problem Other information Possible suggestion Severe pain and discomfort walking (walking will cause further blistering) School campus may be large and changing lessons may mean covering large distances; children may experience fatigue, especially where wounds are extensive • Discussion with teachers as to any ways to minimise this or give extra time; hall passes or lockers can help• May require time off school and work set for home (have a plan in place for this) Blisters need lancing and dressing; socks may become bloody Younger children may need assistance with this and will need a clean, private room and supplies • Medical room• School nurse PE can cause blisters or be very painful if the child has blisters Avoid any high friction activities and repeated jumping (e.g. contact sports like rugby) • Sensitivity and alternative ways to join in (e.g. refereeing a sports match or joining in for part of the activity)• Use of a code with teacher if finding the activity painful Shoes causing pain/blisters Many children with EB find standard school shoes very difficult when they have blisters • Agreement to be able to wear alternatives (e.g. trainers/crocs/fit flops) Blisters on hands making writing difficult May need extra time • Extra time in exams• Soft pen grips• Use of technology Heat worsens problems Hot days will be difficult as it increases the likelihood of blisters and discomfort • Agree any adjustments to uniform/footwear acceptable• Heat regulation in classrooms May need medication for pain Policy needs to be checked • Medical room• Store some with office School trips and activities may involve walking Children can experience anxiety around walking due to fear of or actual pain • Adjust school trips and discuss ways of making it work for the child with EB (e.g. use of a wheelchair or adjusting the route) Emotional distress/anxiety/issues around body confidence Children with disabilities and long-term conditions are more likely to need emotional and mental health support; this can become more apparent in secondary school children • Refer to school welfare officer/pastoral care• Useful resources (e.g. Changing Faces) PE & sports for children living with EB Children living with EB should be encouraged to participate in PE in a way that is meaningful and safe for them. You will find it helpful to discuss their abilities with them and their parent(s) and their EB nurse, if applicable. The PE lesson may need to be adapted for the child living with EB and they may need extra time, space and preventative dressings and/or pain relief. Swimming is an ideal activity for children living with EB and, although there may be some concerns over dressings and wounds, chlorinated pools are generally suitable for people living with EB. Please contact the EB nurse or community support manager for further support in exploring how a child living with EB can participate in swimming lessons. Where equipment is required, these can be adapted – foam mats, foam balls or lightweight equipment can be used and are easily sourced. Children living with EB often experience some anxiety around PE lessons due to the fear of or actual pain and also anxiety over not being able to keep up with their peers and/or differences in appearance (e.g. PE shorts exposing dressings, wounds and scars). Involving the child in discussions and asking them to suggest what they can do will help. If a child reports they are in pain, you may need to suspend the activity. This should be taken seriously and fed back to the parent so that further adaptations or support can be put in place. Transitioning from Primary to Secondary school Many children find their condition worsens when they start secondary school. We suspect this is mainly because of the distances required to walk increasing significantly compared to primary school. Most children are very keen to join in with their classmates and do not want any adjustments made for them. A practical and workable balance needs to be made with all those involved for the times when this condition impacts on schooling. A child in pain is not going to be able to access their education in a very productive way. On a practical level, the child will have to move around the school more, from classroom to classroom for different subjects, which may exacerbate existing mobility difficulties. In some schools there may be limited lockers where books and equipment can be kept, with the expectation that pupils will carry everything with them in a (heavy) bag. The physical layout of the school will become more important and special arrangements to avoid these difficulties may have to be made. There will be an increase in the number of pupils, which can be daunting for a child with fragile skin, and they may not be physically able to ‘keep up’ with their peer. The increase in lessons and homework can also be a challenge. Children living with EB may be fatigued, in pain, require time to rest or change dressings, as well as having keep up when they miss school. On the social and psychological level, the child living with EB is entering a new life where he or she is expected to be more independent and responsible. Children may miss out on social time and activities – moving between lessons (some pupils leave class early to avoid bumping into others or allow extra time to walk) or walking/taking the bus to school might add to feelings of social isolation. Additional help that may be needed must be given sensitively to avoid singling out the pre-teen or young adult, who may become increasingly self-conscious. Some children may have visible differences with varying impact on self-esteem in different children. Recognising and tackling these issues practically, sensitively and sensibly can help. Equality and discrimination The Equality Act 2010 The Equality Act 2010 provides a single, consolidated source of discrimination law. It simplifies the law and it extends protection from discrimination in some areas. In England and Wales, the Act applies to all maintained and independent schools, including academies, and maintained and non-maintained special schools. In Scotland, it applies to schools managed by education authorities, independent schools and schools receiving grants under section 73(c) or (d) of the Education (Scotland) Act 1980. The Act makes it unlawful for the responsible body of a school to discriminate against, harass or victimise a pupil or potential pupil: in relation to admissions. in the way it provides education for pupils. in the way it provides pupils access to any benefit, facility or service. by excluding a pupil or subjecting them to any other detriment. Northern Ireland is mainly covered by the Disability Discrimination Act 1995; visit nidirect.gov.uk for more information. An example of indirect discrimination is when an organisation may have a policy which says that everyone must wear the same clothing or uniform. However, if someone requires specialist clothing because of the effects of their disability, but is prevented from wearing it, they could be put at a disadvantage compared with their peers. Download this printable Spotlight on the Equality Act as featured in a previous edition of InTouch. Assistive technology & aids Assistive technology enables all individuals, including those with disabilities, to be more independent, self-confident, productive and better included in everyday life, education, employment and everyday living. Assistive technology can include small items of equipment (e.g. pencil grips, which can make the task of writing easier). Many of our members request information about pencil grips for school. Simple adaptations (e.g. padded ergonomic chairs, soft cushions, cooling fans) can make a big difference to a child living with EB and their comfort/pain levels during the school day. You may need to consider whether children need additional support with writing (due to pain and blisters on their fingers and hands), extra time in exams or even specialist technology or a scribe. Other technical items that could help a child living with EB include: software packages that convert text to speech voice recognition software soft overlays for computer keyboards tracking balls mouse instead of using a standard mouse soft touchscreen tables or soft keyboard Further support More about DEBRA DEBRA, the national charity that supports individuals and families affected by EB, provides an enhanced EB Healthcare Service, in partnership with the NHS, to deliver optimal healthcare to children and adults living with EB and community support staff to work directly with individuals and families. DEBRA also provides information and help to anybody living or working with EB, including carers and healthcare professionals, and funds pioneering research to find effective treatments and, ultimately, a cure for EB. DEBRA’s EB Community Support Team The DEBRA EB Community Support Team directly helps people living with EB by forging close working relationships with specialist EB nurses and other health and social care professionals to connect clients with the services they need to improve their quality of life. The team provides members with information and support to tackle a wide range of social issues including benefits, finance, housing, education and employment. A team of 8 working remotely across the UK, the community support managers offer support whilst meeting people in their own homes, clinics, events and via email and calls. Every day is quite different – may be supporting a family at the time of bereavement or the birth of a child with EB or helping families in times of change (e.g. if a child is starting primary school or making the transition to higher education or moving home to live independently and looking at work options). The team also offers peer support and social opportunities for people to get together, such as Members’ Day. EB Specialist Centres The EB Healthcare teams may be able to provide further training and support to school staff, either remotely, a visit in person or via a training day. This is usually arranged for the children living with EB that have higher healthcare needs. The DEBRA EB Community Support Team works closely with the healthcare teams so that all children living with EB have access to information and support. Tools for catching up whilst absent from school Maths Whizz Reading Eggs Clicker (for writing) Sounds Write (for phonics) Useful resources DEBRA – information about EB (leaflets for schools) Epidermolysis Bullosa: A Guide for Parents, Schools and Playgroups Living with EB: The Educational Journey Recommendations for Children with EB in Schools EB Simplex (EBS) Kindler EB (KEB) Mild dystrophic EB (DEB) Recessive Dystrophic EB (RDEB) What is EB? infographic For a full list of education resources, please visit our Resources & toolkit page.