University

In this summary young people who are at university, or have already finished a degree, talk about what it is like for someone with a chronic condition to be a student. Among other things they explain what help and support is available for students with a chronic condition whilst at University.

Young people indicated that going to university was a big change in their lives. With the exception of one young woman who had to leave due to illness - university had a positive impact on their lives, most notably in boosting their confidence. In general the institution and the tutors were described as 'brilliant' because they were willing to accommodate their needs and help them with their academic work. For instance one woman with ME, who initially enrolled as a full timer, was offered the opportunity to go back part-time instead. Young people at University told us that it is important to get a note from the doctor if you are not feeling well especially if it means that you can't hand work in on time. They said that when they were ill their tutors emailed or taped the lecture for them or gave them extra time to complete essays or other coursework.

Her worries about her epilepsy faded when she went to university. She started to accept her condition more and was able to talk about it with friends and family.

Feels that things couldn't be better in terms of the support and help he's got from the university, tutors and the student services.

Not surprisingly some young people said that their experience of living with their condition had shaped their interests and career paths. One young woman said that her cystic fibrosis had encouraged her interest in biology.

She remembers reading medical journals in her early teens because she wanted to know more about her condition. Tutors at university have been very supportive.

Young people, talking about the support that is available to university students with chronic conditions, recommend getting in touch with the disability officer/team at the university or chosen university for guidance and advice. They said that you get the Disabled Student Allowance (DSA) which it is intended to help you pay for the extra costs relating to your disability - if they are directly connected with your studies. Extra costs might include specialist equipment, a non medical helper, travel and other costs. Young people told us that the DSA varies depending on your condition, mobility level and care problems. For instance one woman with epilepsy said that she didn't apply for DSA because she knew she would not qualify because DSA it is for people who need help getting around or in getting dressed etc. A young woman who did qualify felt that there was a stigma attached to DSA and did not see herself as having a disability. Another young woman said that it is important for young p eople with chronic conditions to ask for support, to tell others what they need and added 'it's just about swallowing your pride a bit and asking for the help'. One woman with scoliosis said that you don't have to apply for the DSA at the start of your course.

Explains the assessment process for Disabled Student Allowance and the help he got that enabled him to study.

Her physical symptoms gradually deteriorated from sixth form to university. She found it hard to apply for the DSA because she didn't see herself as a disabled person.

Student life

Young people who go to University may, for the first time in their lives, be solely responsible for managing their condition. This is because they may be living on their own in student accommodation, away from everyday family support. At university, they will have to take their medication, decide when and what to eat, and make decisions about drinking alcohol and going out with friends. In addition, some have to do regular exercise or physiotherapy.

Young people often have had a great time at University and some said that they 'partied hard'. Others learned by experience that too much of a social life was detrimental to their health. One young woman with cystic fibrosis found it hard to balance all aspects of her life at university and felt quite run down at times. Now she is in her second year and appreciates the need to eat a proper diet (that for her means lots of calories), the need to sleep more, exercise everyday and not to go out every evening with her friends. Young people who had to work part time to earn money, while studying at the same time, had little time or energy left over for a social life. One young woman said that while at university she seldom went out because the next day she would feel 'terrible'. Another avoided the Fresher's Fair Week to prevent getting a cold or any other infection.

Her social life at university was hectic and she began to feel run down. She has learned what she can and can't do and the health implications of her choices.

As a teenager he lacked self confidence but university and the experience of being seriously ill changed him into a more outgoing person. His social life got a boost at university.

Some young people made the decision to apply to universities that were in their home city or were not too far from their family home. They felt apprehensive about moving far from their family and other support networks. Others said that they went home regularly, particularly if they were feeling run down and in need of a good rest.

Young people sometimes worried about telling their flat mates and fellow students about their medical condition. Usually they realised that their condition was not an issue to other students - as one young man put it 'they have accepted me for who I am'. A young woman with epilepsy said that it was around the time she was at university that she accepted her condition and was able to talk to her friends, family and doctors about it. Another student, with chronic eczema, said that she has found other students with medical conditions and thought that young people at university are less judgemental and more supportive than teenagers at school. While recovering, one young woman with ME, could not face the prospect of studying full time or being around people her own age. She decided to do her degree part-time and enrolled in an evening class with mature or retired students.