- What should I do if the school is not offering what I think my child needs?
- Home to school transport
- Help with exams
- Useful organisations
First make sure the school know what is happening for your child and what your concerns are. If you’ve tried talking to one person and are not happy with the response, try someone else. Here is a list of people in school it might be worth speaking to. It will vary depending on the type of school:
- Class teacher
- Form tutor
- Special educational needs co-ordinator (SENCO)
- Head of year
- Deputy head
- Head of school
- School governors
If the school and children need epilepsy awareness training, Epilepsy Action can help with that.
- Epilepsy awareness training from a volunteer
- Epilepsy awareness training online for school staff
- Epilepsy awareness resources online for primary school children
If you are not happy with the school’s response you could make a formal complaint using the school’s complaints procedure.
See our list of useful organisations for help with this.
What should I do if I think the school is supporting my child really well?
Nominate them for an Epilepsy Action best practice education award, It’s called an Edwards Award.
Some children and young people with epilepsy may be eligible for help with school transport. This is the responsibility of the local authority.
Their duty is described in the home to school travel and transport guidance
When assessing your child, your local authority should consider your child’s individual needs. They should consider:
- The walking distance between home and school
- The safety of the route
- Your family and social circumstances
- Your child’s health, additional needs and/or disability
It may well be useful for the local authority to be aware of your child’s individual healthcare plan. This will help them develop a separate transport healthcare plan.
Each local authority organises home to school transport slightly differently. To find your local information follow the links below:
This information is for people who may need help with GCSE or GCE exams. Most of this will be relevant wherever you live in the UK. There is some slightly different information for Scotland.
Exams are a difficult time for just about everybody. But if you have epilepsy there can be extra problems.
Possible seizure triggers and how to look after yourself
We have heard that stress and lack of sleep are common seizure triggers. These are both very common for people around exam time. So one thing you can do for yourself is to make sure you try everything you can to keep some control of your stress levels. And that you generally do what you can to keep yourself healthy during this time. There are many ways to do this. Some people find it useful to practice them for a while to make sure are really familiar with them, so they are automatic by the time you really need them.
Support at exam time
This information is for all schools in the UK
If you can predict what you may need before the exam starts, then talk to your special educational needs co-ordinator (SENCO). Tell them how you think your epilepsy could affect your exam performance. You need to do this as soon as possible because it can take some time to get special arrangements in place. And there are official deadlines that need to be met.
The SENCO will need to know what sort of problems you may have. They will need medical evidence such as a letter from your neurologist, to support this. They will put the claim together including suggested reasonable adjustments and send it to the Joint Council for qualifications (JCQ). The JCQ will decide if they agree that you need the reasonable adjustment. If they say no, you have the right to appeal.
The aim of access arrangements is:
- To allow you to access the exam and
- To be able to show what you know and can do without changing the demands of the assessment
The adjustments are made under the Equality Act 2010. This applies if you would be at a “substantial disadvantage from other people”. In this situation the JCQ has to consider possible reasonable adjustments:
- They have to be reasonable and
- They have to be apply to you specifically and
- They can apply to an individual exam or all exams
If you already have special educational support you are much more likely to be able to get reasonable adjustments at exam time.
Here are some examples of the types of help you may be able to get:
- Having supervised rest breaks during an exam
- Having an exam supervisor to sit with you to make a note of any seizures you might have during the exam. They would then allocate you extra time at the end of that exam
- Taking an exam at a different time of day or place to other people who are taking the same exam. For example, if you usually have seizures first thing in the morning, you might be able to take the exam in the afternoon
- Getting one-to-one support for practical exams
Special consideration is a scaling up of your marks or grade after your exam. Here is how the JCQ explain the circumstances in which you might get special consideration:
“Special consideration is a post-examination adjustment to a candidate’s mark or grade to reflect temporary illness, temporary injury or other indisposition at the time of the assessment, which has had, or is reasonably likely to have had, a material effect on a candidate’s ability to take an assessment or demonstrate his or her normal level of attainment in an assessment.”
Your grade can be increased by up to five per cent depending on circumstances. The JCQ recommends an increase of three per cent for a person who has a seizure.
The exam board takes into account the marks you got in previous exams or course work in that subject. They may also ask your teacher about other work you have done on the course. A certain amount of the total assessment (course work, practical or exams) must have been completed in order for special consideration to be possible.
When you might get special consideration
You may be given special consideration if, for example, you have a seizure that affects your performance in an exam. The seizure doesn’t necessarily have to happen during an exam. It could happen before the exam, but still be affecting your performance during the exam. Special consideration could be given if you attend an exam but are disadvantaged compared to other candidates. It might also be given if you are absent from the exam because of illness.
How to apply for special consideration
Talk to the SENCO or exams officer at your school or college. They will then ask for special consideration on your behalf.
The application for special consideration must be made within seven days of the exam. You may need to get a letter of support from your doctor to show that you were unable to start or complete the exam. The exams officer should be able to tell you what you need.
Department for Education (England)
This offers a wide range of information about educational issues. The website link goes directly to the new guidance on supporting pupils at school with medical conditions. It also includes templates for schools
IASS (used to be called the Parent Partnership Network)
They are an information, advice and support service network. They have a duty to provide information, advice and support to disabled children and young people, and those with special educational needs, and their parents. There should be an IAS Service in every local authority.
Contact a Family offers advice and information on special educational needs. You can speak to specialist education advisors on their helpline.
Tel: 0808 808 3555
ACE gives advice and information on education issues. It covers state funded education for children aged 5-16 years in England only.
The advice line is open Monday to Wednesday 10 till 1pm in term time.
Tel: 0300 0115 142
The Independent Parental Special Educational Advice service offers free and independent legally based information and advice. For parents of children with special educational needs and disabilities. They have a set of model letters for parents to use.
The advice line is run by volunteers.
Child Law Advice Service
The Child Law Advice Service provides legal information and representation on issues of the child, family and education law relating to children and young people. At the website follow the link to the Child Law Advice Service for a range of factsheets and ‘how to’ guides. The helpline is available Monday to Friday 8am to 6pm.
Tel: 0300 330 5485
Young Epilepsy supports young people with epilepsy and associated conditions. They also provide epilepsy related training.
Tel: 01342 831 34
SEN publishes a magazine every two months covering all issues to do with special educational needs and disability.
The British Institute of Learning Disabilities provides support and training resources for those working with people with learning disabilities.
Council for Disabled Children
A website of resources for schools and school healthcare professionals.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.
Epilepsy Action would like to thank June Massey, Specific Learning Difficulties Consultant, for checking this information.
June Massey has no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
- Updated August 2016To be reviewed August 2019