Preparing for university with EB

University can be an exciting time, but you might also feel overwhelmed at the thought of being away from home or having to cope with new challenges. This is true for many students but, if you are living with EB, you will have some additional considerations.

You might worry about the costs of studying, transport and getting around the campus, as well as coping with the academic demands. The information below aims to help you understand what support is available when preparing for university with EB.

If you need support, contact our DEBRA EB Community Support Team on 01344 771961 and select Option 1.


Choosing the right university

Choosing a university is very individual and depends on a number of different factors – what you would like to study, where it’s located, and more. it is a good idea to consider the following when making your decision:

  • Would you prefer to stay near home and travel to university or live on campus?
  • If you choose to live away from home whilst at university, what additional support might you need to put in place (e.g. help with dressing changes)?
  • Will you be comfortable in the environment? Can you travel around campus or between campus buildings easily? Are there already facilities in place (e.g. easily accessible lecture rooms, blue badge parking near your classes)?
  • What is the social scene like? Does the university have a mentoring scheme that can support you in the early days?
  • What student welfare facilities are available? Would you be able to access counselling or emotional support services easily, if needed?
  • How will you cope with the demands of the course?

The Complete University Guide has created a Choosing a university checklist with some additional questions to consider.


Hospital care

You should inform your EB healthcare team that you will be starting a university course so that you can try to book your regular appointments during your visits home/holidays. You might be able to have appointments over a video or telephone call. Always have the details of your EB team somewhere safe in case of an emergency. If you receive emotional or psychological help, your therapist may be able to give you some strategies or talk through any anxieties that you have.


Funding for university

Paying for university will vary depending on which university you choose to attend, how long your course is for and other factors. You can apply for a government-backed tuition fee loan and a maintenance loan if you’re studying an eligible course (e.g. first degree or a foundation degree). You can apply for student funding if you’re a UK national or if you normally live in the UK. Ask your university or college if your course qualifies for funding.

Please visit the UCAS website for more information about undergraduate tuition fees and student loans.

Government student loans

Tuition fee loan

Your chosen university sets your course fees; however, the UK government allows new full-time students, to apply for a tuition fee loan of up to £9,250. The government loan will go directly to the university and you will pay it back based on the terms agreed.

Visit the website for more information on student finance for new full-time students.

Maintenance loan for living costs

In addition to the tuition fee loan, the government offers a maintenance loan to new full-time students to help with living costs whilst at university. The loan is paid directly into your bank account each term, and you must pay the loan back based on the terms agreed.

The amount you can borrow for the maintenance loan will depend on:

  • Your household income
  • Where you live or study
  • How many credits you will study over a year
  • How much you could borrow as a full-time student

You can only apply for a maintenance loan as a distance learning student if your EB condition means that you cannot attend your course in person.

If you’re a full-time undergraduate and you qualify for certain benefits, you may be eligible for an additional amount in your maintenance loan called the Special Support element. This extra funding is means-tested and worth up to £3,893; it does not count as income when your benefits are calculated.


Eligibility for the maintenance loan for undergraduate student finance depends on:

  • Your university or college
  • Your course
  • If you’ve studied a higher education course before
  • Your nationality and residency status

Visit the website for more information on student finance for new full-time students.

Disabled Students Allowance

Having a condition like EB can be very unpredictable. You will have good days and bad days. At some point, you may need to take time off for appointments or surgery. Your condition may make you eligible for Disabled Students Allowance (DSA). This is additional support and might cover specialist equipment and software or help with travel.

You do not have to be registered as disabled anywhere else for this. When applying for your Student Loan, you can fill out a DSA Application too, which is assessed separately to your loan. It is worth applying for as it may become useful at a later date.

You will need to get evidence of your condition, (e.g. letter from your hospital doctor, specialist nurse or GP). Please contact your DEBRA EB Community Support Manager to help you with this process.

Student Hardship Fund

Some people living with EB may be eligible to apply for a student hardship fund from their university. You may need some evidence of hardship (e.g. proof of low income, supporting evidence from your EB team as to how your condition affects you).

You might find that the increased academic demands, living away from home or the increased travel (to/from university and around campus) means that you are unable to cope with the demands of a job to supplement your income or incurs additional costs.

If the financial demands of your course or acute periods of poor health or planned surgery might affect your income, as well as your wellbeing, you should consider whether the hardship fund can help alleviate some of the additional challenges and keep you on track with your course.

For more information, please view the government guidance on The Hardship Fund. You can apply through your university. Contact your DEBRA EB Community Support Manager for help.

Bursaries and scholarships

Bursaries and scholarships are available to help students attend higher education. These are in the form of non-repayable grants and often provided to students based on specific criteria – outstanding grades, involvement in clubs/sports, etc.

Each university or higher education establishment has their own eligibility criteria and are worth investigating in case you are able to apply. These may also be available through national organisations, including charities.

The Complete University Guide has some useful information about University bursaries and scholarships.


Discrimination in university

It may be discrimination if your education provider is treating you unfairly or differently than others because of your EB. Discrimination it might also be that you are treated the same but that puts you at a disadvantage because of a disability.

Know your rights

The Equality Act 2010 can protect you from discrimination if you are defined as 'disabled' under the Act. This usually means how your EB condition affects you, not what your condition is. The Equality Act covers discrimination from:

  • Further education and training providers (e.g. colleges)
  • Higher education providers (e.g. universities)
  • Teachers or staff from the college or university

This means your university or college must not discriminate against you in things like:

  • Admissions
  • How they provide your education
  • Disciplinary procedures and exclusions
  • Assessments and exams
  • Physical environment and facilities, including lecture halls, accommodation, libraries and IT
  • Leisure, recreation, entertainment and sports facilities
  • Discrimination in education

Please contact your DEBRA EB Community Support Manager for advice and so you know your rights.

Reasonable adjustments at university

If you think you're experiencing discrimination because of your EB, find out who supports disabled students at your university. This could be one person or divided amongst a number of roles. You could start by going to:

  • Student support or learning support services (sometimes called student disability services)
  • Your course leader or your tutor
  • The Students' Union

Ask who you should speak to about disability. The job title can vary between education providers – e.g. Disability adviser or officer, Disability co-ordinator, Learning support adviser (further education) – but their job is to make sure the college or university is meeting its duties under the Equality Act.

Before going to your disability adviser, you might want to talk to your DEBRA EB Community Support Manager who can advocate on your behalf for:

  • Providing reasonable adjustments and course support
  • Stopping the discrimination
  • Having the education provider review a decision
  • Requesting an apology
  • Changing policy
  • Taking action about discrimination in education

Talk to your disability adviser

Request a confidential chat with your disability adviser and ask your DEBRA EB Community Support Manager to support you in the meeting. You should discuss the difficulties you are having, the impact on you and how you want help. Be factual and specific. Tell or show them everything you have done so far to try to manage or resolve the problem.

Be sure to ask what support they can provide. If you know what you need, ask for it. Remember that you are not asking for a favour or special treatment. You are telling them about your right to support after facing disability discrimination.

Request this in writing and keep a copy. You may need it if you decide to make a formal complaint or take legal action.

Make a formal complaint

If your adviser has not resolved the problem, follow the college or university complaints procedure to escalate the issue. This procedure can usually be found in your student handbook, on the college or university website or by asking your disability adviser for the complaints procedure.

You must go through the complaints procedure before you can do anything else. In higher education (university), you should get a 'Completion of Procedures' letter to confirm the end of the process and report the outcomes.

You can ask for the complaints procedure to be accessible to you, and you can ask for any adjustments that you need to access the complaints procedure (e.g. a copy of the procedure in a large print document or having a British Sign Language interpreter for meetings). If your complaint is not resolved, you may be able to complain to:

  • Education and Skills Funding Agency – for colleges and further education or training providers
  • Office of the Independent Adjudicator (OIA) – for universities and higher education providers – they will check the university has followed procedures and best practice and may also help you reach an agreement with your university. This is called mediation.


Useful resources

For a full list of education resources including preparing for university with EB resources, please visit our Resources & toolkit page.