Long term health conditions

School life

Living with a long-term condition can sometimes cause difficulties with going to school, studying, taking exams, going on outings etc. Here young people tell us how their condition has affected schooling and some of the personal problems they've experienced. They also talk about how their classmates and their teachers reacted to them. 

School support

Most people said that their primary and secondary schools have been very supportive. Some remembered their parents going to the school and talking to their teachers and classmates about their condition. Sometimes a nurse came into school to explain about their treatment and also what teachers might need to do in case of illness or an emergency. A few young people said they had been assigned a support worker to help them at school. During exam times, some schools were very helpful. One young woman remembers that the exam hall was cold and because of her sickle cell disease they sat her in a warmer room to take her exams. A girl with cystic fibrosis said that she had been able to go on trips with the school because her teachers had learnt how to give her daily physiotherapy. Another young woman was in hospital at the time she was meant to be taking her A/S level exams. She said that a teacher came to the hospital so she could do her exams. These young people felt fully involved in school life. 

A few young people said that primary schools are better than secondary schools at dealing with students with health conditions because they are more caring and there's more supervision. One young man with severe asthma said that not all teachers are aware that his condition is serious and potentially life-threatening. He thinks that this situation is improving now that Asthma UK is working with schools but feels that still more needs to be done. An 18 year old boy with muscular dystrophy explained that he wanted to go to a mainstream school because he'd always mixed with able bodied children, but in the two years since his family came to the UK from Pakistan he has not been given a school place. 

School classmates

Teachers can play an important role in helping children understand long-term conditions and what to do if a child needs help. One young woman said that she felt her teachers made more allowances for her, although she tried not to take advantage of this. Some young people said that they had been asked to talk to the class about their condition which had helped others to understand certain aspects of their illness like why they need to take medication in school. Others said that taking tablets or injecting at school led others to think of them as 'drug takers'. One young woman with cystic fibrosis told her classmates why she needed to take so many tablets at lunchtime and found that they were accepting. Sometimes young people preferred not to discuss their medical condition with other young people. A young woman with scoliosis laughed when she remembered how she used to pretend that she didn't have a health condition. If someone pointed out that 'you're walking a bit funny', she would reply “Oh, I've just got a problem with my back, It's fine though” and I would limp off. It was quite funny actually.

Some had experienced some bullying, in the form of name calling, when they were at primary school which could be upsetting. Several young women said they'd had a difficult time at secondary school. They said that their classmates rejected, ridiculed and even laughed at them. Some lost friends after their diagnosis or because they looked different from other teenagers. A boy with ME/CFS said that he didn't get a lot of sympathy at school and knew that many of his schoolmates thought that he was faking his illness. Some of his parents' friends even thought he was pretending to be ill because he was bullied at boarding school and didn't want to go back.

Missing school

Pain, tiredness, a worsening of physical symptoms and going into hospital can all contribute to low attendance at school. Sometimes these disruptions are for just few days but in other cases several weeks may pass before they are well enough to go back to school. One young woman said that her epilepsy sometimes affected her school attendance but if she controlled her triggers epilepsy didn't really affected her studies. On the other hand, a young man used to miss school for several weeks at a time following an asthma attack and he had to do a lot of catching up when he felt better (see also 'Looking after yourself' getting the right balance').

Several young people found it very difficult to attend school on a regular basis during a worsening of their condition. A young woman with arthritis whose treatment was not working was in a lot of pain so her doctor arranged for her to have tutorials at home. However she only had four hours tutoring a week which she said was not nearly enough. One of the young men with arthritis had to have several operations as he was growing up and lost months of schooling. Altogether this amounted to 'years of school absences'. 

Several young people who missed a great deal of schooling felt that their secondary schools let them down. The main problems have been failure to provide school work for them while they were in hospital, or to properly supervise their progress. A young man with asthma said 'it is as if they don't care'. A young man with muscular dystrophy has been waiting for two years for a secondary school place. His mother tried to talk to the relevant people but without success.

One young woman who went to a small private school said that even though she had spent time in hospital her teachers were always helping her to catch up with her work on her return to the classroom. She thinks that her experience would have been different if she had been in a large urban comprehensive.

Achieving educational goals

The young people we talked to were motivated to make the most of their education despite their physical problems. Most had either left school with qualifications such as GCSEs, GNVQs or A-levels or were still in school or further education and planning to go to university. For several young people, the achievement of educational goals had been a turning point in the way they deal with their medical conditions. They realised that educational accomplishment is something they could control. In spite of this many said that it is hard catching up after being in hospital or concentrating in class when you are feeling ill or in pain. One young woman told us that she couldn't follow her first choice of career because of her condition but she still plans to go to university. A young man said that he thinks he needs to be extra well prepared for the world of work as a disabled person.

What is a transition plan?
In Year 9 all pupils will be asked to a review meeting at school, which must include creating a Transition Plan. A Transition Plan is a document that outlines what you want to achieve in the next few years and what support you will need to live as independently as possible. It covers every aspect of your life, including education, employment, housing, health, transport and leisure activities. For links to further information see our practical matters resources.

Last reviewed July 2017.

Last updated February 2012.


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