Children & School Guide
A practical toolkit for parents, school staff, and young people navigating ichthyosis in education.
Covers pre-school through secondary school — skincare planning, EHC plans, mental health, and ISG resources.
Before Starting School
Preparation before your child's first day makes everything easier — for your child, the teacher, and support staff. Give the school enough time (ideally several weeks before term) to understand and prepare.
A short letter on headed paper explaining what ichthyosis is, that it is not contagious, and the key requirements (skincare access, temperature management, PE adaptations) will carry significant weight with school leadership. Ask your dermatology team specifically for a "school support letter."
The Special Educational Needs Coordinator (SENCO) is your key contact for managing health needs in school. Request a meeting before term — not at the beginning of the first hectic week. Bring the dermatology letter, your written management plan, and a list of your specific asks.
A one-to-two page document covering: skincare schedule and who applies it, emollient storage requirements, heat and sun exposure protocol, PE and sport adaptations, emergency procedures, and your contact number. Keep it practical, not medical. See Section 2 for full content guidance.
The Ichthyosis Support Group (ISG) produces a free "Managing Ichthyosis at Pre-School and Primary School" guide — available from ichthyosis.org.uk/shop. Share this with the class teacher and SENCO. It normalises the process and gives staff professional context.
If your child needs emollient application during the school day (especially younger children), a named member of staff should be designated and shown how to apply it correctly. This should be documented in the management plan and signed off by the SENCO.
The School Management Plan
A written management plan is the single most important document you can provide to school. It should be clear, practical, and updated annually. Include the following sections:
Daily Routine at School
- What time emollient is applied (e.g. after lunch, post-PE)
- Which products are used and how much
- Name of member of staff who assists
- Where emollients are stored (fridge if liquid emollient)
- What to do if supply runs out
Temperature Management
- Child must have access to a cool, shaded area in hot weather
- Right to sit near open windows / fan in classroom
- Must be allowed to drink water freely (thermoregulation requires hydration)
- Outdoor activities in heat — enhanced supervision protocol
- Emergency plan if child becomes overheated (cool room, cool damp cloth, immediate parent contact)
PE & Sport Adaptations
- Child can participate in most PE activities
- Requires cool environment — avoid hot gyms in summer
- Access to cool water during activity
- May need to remove footwear more easily (Velcro fastenings)
- Swimming: apply emollient before and after pool
- Rest breaks during sustained exercise
What to Do If...
- Skin becomes infected (redness, oozing, smell) — contact parent immediately, do not wait
- Child is in significant pain from skin — allow rest, contact parent
- Child becomes overheated — move to cool area, remove layers, cool water, contact parent
- Reaction to product — stop use, contact parent
- Emergency contact: [parent mobile] / [secondary contact]
Explaining Ichthyosis to Classmates
Children are naturally curious. A matter-of-fact, age-appropriate explanation given early prevents rumour and misunderstanding. Involve your child in deciding what they're comfortable sharing.
Age-Appropriate Language
"My skin grows a bit faster than yours, so it has to shed more — a bit like a snake's skin, but much slower. It's not catching, it doesn't hurt me when you touch me, and it just means I have to put cream on more often."
— Suggested wording for ages 5–8"I have a genetic condition called ichthyosis. My skin barrier doesn't work exactly the way it should, so my skin gets thicker and drier than most people's. I manage it with creams and some lifestyle adjustments. It's not contagious and doesn't affect how I learn."
— Suggested wording for ages 9–13Resources for Schools
"Luke and the Tiger" — ISG Storybook
A picture book by the ISG specifically written for ages 3–7 to explain ichthyosis to classmates and siblings. Available from ichthyosis.org.uk/shop. Teachers can read it to the class before the child starts.
Changing Faces — School Resources
Changing Faces charity provides free teacher training resources and classroom tools for supporting children with visible differences including ichthyosis. Available at changingfaces.org.uk → Schools section.
Teacher briefing — before the child arrives
Ask the teacher to introduce the topic briefly before your child starts — framed positively: "We have a new member joining who has a skin condition — it's not catching, and it just means they need a bit of cream during the day." This normalises it before children see it.
Secondary School & Teenagers
Secondary school brings new challenges: increased independence, PE showers, social complexity, and academic pressure. Start preparing for the transition from Year 5 onwards.
Building Self-Management Skills
- Start teaching self-application of emollients from age 8–10 — gives ownership and confidence
- Teenager should be able to explain their condition themselves by Year 7
- Carry a small emollient supply in school bag at all times
- Know their own triggers (heat, sweat, specific products)
- Understand when to escalate to a teacher or parent
Rights in PE and Changing
- Right to use shower privately — should be agreed with SENCO before Year 7 starts
- Right to change in a separate area if communal changing causes distress
- PE teacher should be briefed annually — don't assume information passes between staff
- Swimming: brief the swimming teacher separately — emollient application pre/post pool is necessary
- Competitive sport: can participate fully with appropriate adaptations
Uniform Adaptations
- Collar and tie can cause significant neck irritation — request medical exemption from formal collar/tie requirement
- Open-neck shirt or soft jersey alternatives may be agreed with the school
- Tight cuffs and elastic at wrists can cause flare — discuss with school
- A letter from dermatology supports any uniform adaptation requests
Travel and Climate Planning
- Inform trip leaders of heat-related needs well in advance
- Hot climate trips (Europe in summer) need a detailed plan: cool accommodation, shade access, flexible activity scheduling
- Carry full emollient supply (not just for a day) on trips
- Medical information card in bag / luggage at all times
- SENCO should review risk assessment for all trips involving the child
Education, Health and Care (EHC) Plans
An EHC Plan is a legally binding document that details the educational, health, and care needs of a child, and the provision that must be made to meet those needs. Not all children with ichthyosis will need one, but for those with significant impact on learning or daily functioning, it provides important protections.
Which Children Are Most Likely to Qualify
Learning difficulties and photosensitivity are core features. EHC Plan strongly recommended. Cognitive impairment, photosensitivity management, and specialist educational support should all be covered.
Medical complexity, nursing needs during the school day, and potential co-morbidities make an EHC Plan appropriate in most cases. Should address nursing support, skincare schedule, heat management, and inclusion provisions.
Significant time spent on skincare management, potential for pain affecting concentration, and thermoregulation needs may support an EHC application. Each case assessed individually.
Hearing impairment (a core feature of KID) is itself a common basis for EHC Plan. Photophobia, skin management needs, and any learning impact from recurrent infections support a comprehensive plan.
If ichthyosis management (skincare time, pain, fatigue, hospital appointments) is demonstrably affecting school attendance or academic progress, this is grounds for an EHC assessment regardless of specific type.
How to Apply
Search for your local authority's SEND (Special Educational Needs and Disabilities) team. You can request an EHC needs assessment directly as a parent — you do not need the school to request it.
A letter from your consultant or specialist nurse explaining the condition, its functional impact, and the medical needs strongly supports the application. Be specific about how ichthyosis affects the child's school experience.
The local authority has 6 weeks to decide whether to carry out a full EHC needs assessment. The full process (from request to final plan) must be completed within 20 weeks. You have rights of appeal at each stage.
EHC Plans are reviewed annually. Use the review to update the plan as your child's needs, school stage, and condition change. Don't let it become outdated.
ISG Resources for Families
Free School Guide Download
"Managing Ichthyosis at Pre-School and Primary School" — a professionally produced guide you can give to school staff. Free download from ichthyosis.org.uk/shop. Also available as a printed booklet for a small postage charge.
ISG Helpline: 0800 368 9621 (free)
Open Monday–Friday during office hours. Staffed by volunteers and staff with direct experience of ichthyosis — including parents of children with the condition. No question is too small. They can advise on navigating school, EHC applications, and any aspect of daily management.
ISG Young Persons Group
ISG runs peer support groups specifically for young people with ichthyosis. Meeting peers who understand the experience — in person and online — is enormously valuable for teenagers. Contact ISG to find out about current groups for your child's age range.
Peer Support Matching (Parent to Parent)
ISG can match you with another parent whose child has the same type of ichthyosis. Speaking to someone who has already navigated school, EHC applications, and teenage years is invaluable. Ask ISG to arrange this when you call.
Mental Health & Bullying
Children with visible differences are at significantly elevated risk of bullying and social exclusion. This is not inevitable, but it requires proactive management — by parents and schools together.
Your Child's Legal Rights
Ichthyosis is classified as a disability under the Equality Act 2010 in many cases (it has a substantial long-term adverse effect on normal day-to-day activities). Schools are legally required to make reasonable adjustments and to prevent disability-related harassment and bullying. This is not optional — it is a legal obligation.
Keep a log with dates, what was said or done, who witnessed it, and how the school responded. Written records are essential if escalation becomes necessary.
Class teachers rotate. The SENCO has cross-school responsibility and can ensure continuity of support. Bullying related to a disability should be escalated to the SENCO and recorded formally in the school's bullying log.
Changing Faces provides free, school-specific anti-bullying resources for children with visible differences. Available at changingfaces.org.uk — including teacher training materials and classroom activities.
Teenagers with ichthyosis who have peer support from others with the same condition show significantly better psychological outcomes. ISG's young persons group and peer matching service can provide this.
Don't wait for crisis point. Ask your dermatology team or GP to refer for psychology support if your child shows signs of low mood, withdrawal, school avoidance, or significant anxiety about their appearance. Child and Adolescent Mental Health Services (CAMHS) can be accessed via GP referral.