Using your records for an EHCP or school support
Rachel Ho
Daily Care
Using your records for an EHCP or school support: a guide for rare disease families
When your child has a rare condition, school can be one of the places where things matter most, and one of the hardest places to explain.
Teachers may never have heard of the condition. Symptoms can come and go. And the people deciding what support your child gets usually only see what is written down.
That is where your own records can make a real difference.
Quick answer: your everyday notes, letters and reports can be used as evidence when you ask for support at school, including an education, health and care plan (EHCP) in England. The most useful evidence shows how your child's condition affects their learning and daily life, with dated, specific examples, not just a diagnosis. You can ask your local authority for an EHC needs assessment yourself, and you do not need a diagnosis to ask.
This guide focuses on England. If you live elsewhere in the UK, see outside England below.
The main types of school support
There are a few different kinds of support, and they are easy to mix up.
SEN support
This is support your child's school arranges itself for children with special educational needs (SEN). It might include extra help in class, a different approach to teaching or support from specialists. Most children with SEN get support this way.
An individual healthcare plan
An individual healthcare plan (often called an IHP) sets out how the school will support a child's medical needs. For example, what to do if your child has a seizure, how medicines are given, or adjustments for tiredness or pain.
State-funded schools in England, including academies, have a legal duty to make arrangements for pupils with medical conditions. You should be invited to help write your child's plan.
An EHCP
An education, health and care plan (EHCP) is for children and young people up to the age of 25 who need more support than a school can usually provide through SEN support. It is a legal document. It sets out your child's needs and the special educational support the local authority must make sure they receive.
A child can have more than one of these. For example, a child might have an individual healthcare plan for their seizures and an EHCP for their learning needs.
What about the SEND reforms?
In February 2026, the government published plans to change the special educational needs and disability (SEND) system in England. The Department for Education has said that no changes to the support given by EHCPs will begin before September 2030.
For now, the current system still applies. We will update this guide as things change.
Why your records matter
Decisions about support are made on evidence. Reports from school, doctors and therapists are important, but they each see only part of your child's life.
You see the rest:
the mornings that take twice as long
the days after a bad night or a seizure
what happens after a tiring school day
what helps and what does not
Rare conditions can also be unpredictable. If your child has good days and bad days, a single school observation or assessment may not show the full picture. Notes taken over weeks or months can.
What makes good evidence
Focus on impact, not only the diagnosis
A diagnosis on its own does not tell the school or local authority what your child needs. What matters is how the condition affects your child's learning, health, communication, independence and wellbeing.
Less useful:
"She has a rare genetic condition and epilepsy."
More useful:
"After a seizure, she usually sleeps for 2 to 3 hours and is confused for the rest of the day. In the last 6 weeks this has happened 4 times on school days. On those days she cannot follow instructions or remember new information."
Be specific and dated
Dated notes are much more convincing than general statements. Try to include:
when it happened
what happened
how long it lasted
what it affected
what helped
Our guide to what to track between rare disease appointments has a simple structure you can use.
Keep notes over several weeks
Notes over several weeks show more than a single bad day. For example:
how often your child is too tired to finish the school day
how many days were missed because of appointments or illness
how long homework or getting ready takes
how often your child needs help with personal care
Include what helps
Evidence is not only about difficulties. Noting what helps shows what support might work:
"Managed a full morning when she had a rest break at 10.30."
"Coped much better with the class trip when an adult she knew stayed with her."
Records worth gathering
You do not need everything, but these can all be useful:
Your own notes about daily life, episodes and changes
Clinic letters that describe the condition and its effects
Therapy reports, such as speech and language, occupational therapy or physiotherapy
School reports and anything the school has written about your child's needs
Care plans, such as a seizure plan or emergency plan
Attendance records, especially absences for appointments or illness
A short profile of your child, written by you, covering their strengths, what they find hard and what helps
If a letter uses medical terms the school may not understand, it can help to add a short note, in your own words, about what the condition means for your child day to day. If you are unsure what a term means, ask the clinician who wrote the letter.
Asking for an EHC needs assessment
As a parent, you can ask your local authority for an EHC needs assessment yourself. You do not need to wait for the school to do it. Young people aged 16 to 25 can ask for themselves.
A few things that are useful to know:
You do not need a diagnosis. The legal test is whether your child has, or may have, special educational needs, and whether it may be necessary for support to be provided through an EHCP.
Ask in writing and keep a copy, with the date you sent it.
The local authority must decide within 6 weeks whether to carry out an assessment.
The whole process, from your request to a final plan, must normally take no more than 20 weeks.
Include your evidence, or say that you have it and can share it.
If the local authority says no, you can appeal to the SEND Tribunal. You will usually need to contact a mediation adviser first, and there are time limits, so get advice early. Free, independent advice can help with this.
Keeping the school up to date
Rare conditions often change over time. It helps to:
share new clinic letters or care plans with the school when they change
ask for your child's individual healthcare plan to be reviewed after a big change, such as a new medicine or new symptoms
keep a note of what was agreed at school meetings, and when
Free help and advice
You do not have to do this on your own. Free, independent help is available:
Your local SENDIASS (special educational needs and disabilities information, advice and support service). Every local authority area has one. Search your council's website for "SENDIASS".
IPSEA, a charity offering free, legally based advice on special educational needs.
Contact, a charity for families with disabled children, with a free helpline.
Outside England
The system is different in other parts of the UK:
Wales uses individual development plans for children with additional learning needs. SNAP Cymru offers free advice.
Scotland uses coordinated support plans for some children with additional support needs. Enquire is the Scottish advice service.
Northern Ireland uses statements of special educational needs. The SEN Advice Centre (SENAC) offers free advice.
Records that show the day-to-day impact of your child's condition are useful wherever you live.
What to remember
Focus on how the condition affects learning and daily life, not only the diagnosis.
Dated, specific notes over time are the strongest evidence.
Include what helps, not just what is hard.
In England, you can ask for an EHC needs assessment yourself, and you do not need a diagnosis.
Free help is available from SENDIASS, IPSEA and Contact.
How Rarevia can help
Families are often asked to describe months of daily life in a single form or meeting.
Rarevia is being built so families can say or write what is happening, in their own words, as it happens, and keep those notes organised in one place. Whenever you need it, a summary of how things are, recent updates and your questions are ready to share. Rarevia can't tell whether something is urgent, and it isn't monitored.
If you are tired of rebuilding the story every time someone asks, join the waitlist and help shape Rarevia as it is built.
Sources and further reading
This article draws on GOV.UK guidance on special educational needs, Department for Education guidance on supporting pupils with medical conditions, and information from IPSEA and Contact. It is general information, not legal or medical advice. For advice about your child's situation, contact your local SENDIASS or IPSEA.
GOV.UK: Extra help for children with special educational needs (EHC plans)
Department for Education: Supporting pupils at school with medical conditions
Department for Education: Schools white paper: what parents need to know about changes to the SEND system, May 2026
IPSEA: ipsea.org.uk
Contact: contact.org.uk
Welsh Government: Additional learning needs
Enquire (Scotland): enquire.org.uk
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