Going to college or university

Choosing a course can be a difficult decision. As a person with epilepsy, you may find it helpful to ask some extra questions, like:

• Will I be able to do all the course work safely?
• Will I be able to get a job in this area of work?
• What support will I need to make this course possible?
• Do I want to live with, near to or away from my family?

If you think parts of a course might be difficult or unsafe because of your epilepsy, this doesn’t always mean you need to rule it out. The UK equality laws mean universities have a legal duty to make changes to make sure your epilepsy doesn’t put you at a disadvantage. This is called making reasonable adjustments.

UCAS has a video and a list of useful questions to ask yourself at the planning stage. It is aimed at people going to university, but many of the questions are relevant wherever you may want to study.

Young Epilepsy has an Epilepsy Friendly mark it awards to institutions that are doing more to understand epilepsy and provide support for students. Visit their website to see a list of universities with the Epilepsy Friendly mark.

As a student with epilepsy, you may be eligible for financial support through Disabled Students Allowance (DSA). DSA is a government fund for people who have a long-term health condition and are applying to be an undergraduate or post-graduate student.

DSA is not a loan, so you don’t need to repay it. The money you may get will be based on your level of need, not on what your income is.

The aim of DSA is to cover some of the extra study-related costs you may have because of your epilepsy. It doesn’t pay for everyday student costs, such as course fees or accommodation.

Here are some examples of things DSA might pay for:

• Digital voice recorders
• Assistive software, such as text to speech software, voice recognition and mind-mapping software
• Seizure alarms
• One-to-one study skills support if you have difficulty in understanding and remembering information
• A mentor
• Occasional assistance with study-related travel costs, such as taxi fares

DSA is available through Student Finance England, Student Awards Agency Scotland, Student Finance Wales or Student Finance Northern Ireland. If you are applying for general student finance, you can usually apply for your DSA at the same time.

You may also be entitled to certain benefits.

The college or university should help you to make the most of your education. They need to bear in mind the equality laws and consider reasonable adjustments to support you.

The disability adviser or disability support team at the university you are applying to can explain what support you may be able to get and who it will come from. When you contact them, it would help to provide evidence of how your epilepsy may affect your learning. This can be a letter from your doctor.

The more specific the doctor can be about your needs, the more likely you are to be able to get the right support. If you have problems with memory or understanding information, your consultant or family doctor should mention this in their letter. Don’t expect the disability adviser to be an expert in epilepsy. You may need to help them out with some awareness raising.

Here are some examples of possible reasonable adjustments:

• Finding you a room in halls of residence with staff on site
• Supplying notes or making sure you have a ‘catch-up session’ if you miss a lecture because of a seizure
• Making sure any material they use is not going to trigger your seizures, if you have photosensitive epilepsy
• Having handouts and discussion materials provided before a lecture, to help you become familiar with the content
• Having lectures recorded, so that you can listen or watch again after the lecture
• Having tutors and lecturers provide you with written instructions and feedback
• Giving you flexible deadlines to finish your work
• Giving you extra time to copy information

Access arrangements

Access arrangements are arrangements made for someone to take an exam in a slightly different way to other people. They must be put into place before the exam period starts. Your university must have proof that you have epilepsy and details of how your epilepsy affects you.

There is a deadline for applying for access arrangements, so it is really important to speak with your disability adviser or exams officer as early as possible. Examples of possible access arrangements include:

• Having supervised rest breaks during an exam
• Having extra time in your exam, if you have absence seizures, or difficulties with memory and processing information
• 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

Epilepsy and assessment

The exam board may take your epilepsy into account if you feel your marks for an exam or assessed piece of work may have been affected by your condition. Possible situations could be missing an exam because of a seizure, or feeling you have performed less well than you could because of a seizure.

The exam board may, for example, award you an increase in marks. They may allow you to re-take a failed exam or assessment. Or they may excuse you for handing assessed work in late.

It will normally be your responsibility to inform the exam board that your performance has been affected by your epilepsy. You will also need to provide supporting evidence such as a letter from your doctor. How you do this varies between places of study, so you should check the rules for where you are studying.

If you had support during exams at school or college, it may be possible for this to continue. If you have not had support at school or college, you may still be able to get some. The disability adviser at your university should be able to help you with this.

This will vary depending on where you study. But if you’re not getting the support you feel you need, here are some suggestions:

• Talk to the disability adviser
• Follow your university’s internal complaints procedure
• Contact Disability Rights UK’s Disabled Students Helpline
• Ask the Student Union at your university for help with your complaint

If you are moving away from home, you will need to register with the campus medical services, or a local GP practice. You might also like to book an appointment to talk to them about your epilepsy medicines and repeat prescriptions.

If you go to university in England, you can get a medical exemption certificate once you turn 19. This will allow you to keep getting your prescriptions for free. In the rest of the UK prescriptions are free for all ages.

If you see an epilepsy specialist at a hospital near your family home, you might choose to keep your care with them and travel home for appointments.

You will need to give them the details of your new GP. If you would prefer to see a specialist at a hospital closer to your university, talk to your GP or your current specialist about how to transfer your care.

If your seizures are not fully controlled, you might want to talk to the teaching staff about what to do, and what not to do, if you have a seizure. You might also want to talk this over with some of your fellow students or housemates. You could show them our first aid information.

The more upfront you are about how your epilepsy affects you, the more likely it will be that your friends are relaxed about it. Read more about talking to people about your epilepsy on The Epilepsy Space.

Many universities will outline your needs in a student support document which can be shared with your teaching team. You can use this document to discuss your support needs with your tutors and friends. Ask your disability adviser if the university provides this type of document.

If you already have extra help with day-to-day living, you can take your care package (provided by your local social services department) with you into further or higher education.

If you don’t already have help, you will need to get a needs assessment from your local social services department. Apply to the social services department where you are living before you go to university. It is worth applying for this assessment as early as possible.

Disability Rights UK

Disability Rights UK has a range of very helpful resources if you’re thinking about education after 16.

• Website: disabilityrightsuk.org
• Disabled Students Helpline: 0800 328 5050 for students studying in England. Open Tuesday and Thursday 11am-1pm.
• Website: disabilityrightsuk.org/how-we-can-help/helplines/disabled-students-helpline
• A range of factsheets and guides on further and higher education, including Into Higher Education.

UCAS

This is the universities and colleges admissions service. It has a range of information on going to university if you’re disabled, including a detailed list on how to prepare for university. They also have a video featuring various disabled people talking about their experience. It includes Rachel who is blind and has epilepsy.

Website: ucas.com

National Union of Students

The National Union of Students represents the interests of students through a network of 600 Student Unions. Their work includes campaigning on the rights of disabled students. Speak to your university’s Student Union or visit the NUS website for more information.

Website: nus.org.uk