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Long term health conditions (young people)

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. 

 

Her primary school accommodated all her needs and made sure she was included. At secondary school...

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Age at interview: 23
Sex: Female
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When I went to school my mum made quite a few arrangements to make sure that I fitted in. I wasn't treated any differently from any of the other children. She made an arrangement with the headmaster that I have my creon enzymes put in the headmaster's office and every dinnertime I would have to go get them [laugh]. And it would be rather embarrassing because I wouldn't be able to reach the top of the cabinet and he. I would always have to ask him to get them down for me. And if I didn't go to get my tablets he would know because I wouldn't go to his office if I forgot to go get them. So it was a good way of him making sure that I took my tablets and also you know to control them in a school environment. 

And another perk of having CF that was rather good was that I actually got to be the first in the queue. Because [laugh] I, because of good nutrition because it's so important to, to eat lots of food they, they felt that by putting me at the front of the queue it would make me feel more appreciated. And I got to take one friend with me in the queue so I was a very, very popular child [laugh]. Because everybody wanted to go with me first in the queue.

I didn't really get bullied in primary school. I mean I wouldn't say I got, really got bullied at all. In primary school it was very much. It wasn't really an issue. None of the children really brought it up. They'd ask why does Lindsay take a tablet. My mum did actually go in and give a talk on CF and there was a CF Trust video that she took along with her to show the children. And I think that helps because they got all the questions out in the open there and then. And silly questions like, 'Can you feel the tablet when you swallow it? And can you feel it digest your food?' And you know, 'Why does Lindsay cough all the time?' and things like that. You know it really helped and my school friends to understand. And it just became, it didn't become an issue at primary school. 

It was only in secondary school that people started to ask. And oh like, 'Ooh what's wrong with her, druggy Lindsay' and things like that which were quite hurtful because I was a very hard-working, young girl and I didn't want to really be associated with, you know, drug-taking which was very naughty you know. And it maybe battered my self esteem a little bit but the, the best advice that my mum could give me was to just basically ignore it, move on. Just ignore those people they're not worth listening to and to get my head down [ha], do some work which is what I did. And it certainly didn't put me off school. I enjoyed school so much and I found that my friends were really supportive. There were only a small few people that really knew what CF was.

 

She had a very supportive helper in secondary school who would get her to the doctors if she had...

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Age at interview: 17
Sex: Female
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Yeah like when I had exams like my GCSEs I wouldn't be able to be in the school hall because the school hall was very, very cold. So they were so protective that, that they didn't let me go in the school hall. They, I have to go in a different room to do my, take my exams, like in a warmer space because the drama hall was very, very cold. Yeah. And in high school I could wear, I could wear sports trousers like jogging bottoms 'cause it was warmer than school trousers, they was thicker which I could wear them with my trainers. So I had an advantage and yeah.

Have they been supportive?

Yeah very supportive at times. They actually they have been very supportive, not the college that I'm in now but when I was in high school, I mean secondary school. The, I had like a personal assistant at the side. Her name was [name] and, any time that I would have an attack then she would, you know call the ambulance. I would go to the office myself or someone would drag me or pick me up and take me to the office. And they should call the ambulances and then or go to the doctors and my mum will meet me. I'd go to hospital and then my mum meet me at the hospital and [name] would be there throughout maybe like for the whole day with me and I just thank god for her there because she was very, very, she was so kind. She was sweet and she was there for me. It was just like, she never knew what sickle cell was like. She was just like, she didn't like seeing me in pain and she would you know, she'd just be there and just she used to be there for like the day helping me and sometimes I'd be asleep and then I wake up and she's still there and she was very, very nice. She was very, very supportive and she helped me.

This was when you were in high school?

Yeah.

In primary school I never really, actually I had, I never had a lot of attacks, not really. 

No?

Not as much as my secondary school. 'Cause when you're in secondary school you think that, 'I'm big now'. And I can do a lot of things and you have so much energy. You want to go do, go here. You want to go there. You want to do this. You want to do that. You just want to experiment when you're from, from eleven to sixteen you just want to experiment and do a lot of things and stuff. But in primary school I never had that much attacks. Like I was loud in primary school but quiet as well. I wasn't really. I didn't really have too much attacks there. Yeah.

 

After his diagnosis he went back to school in a wheelchair. The school and classmates were...

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Age at interview: 17
Sex: Male
Age at diagnosis: 7
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I can remember going back to school in the September because it started in the summer holidays and I was obviously still in a wheelchair. And I wasn't able to manage a full day at school 'cause I was so tired all the time. So I used to go in for the mornings and come back and come home in the evenings, in the afternoon. I can remember it as quite strange being in the wheelchair and I had to take the arms off the wheelchair in my lessons to go under the table. And it was embarrassing I think at first because, you know, you're being pushed around all the time. And you just want to be running around and playing with your mates. But that was no longer possible really.

It was a good year before I started a normal routine and I was out of my wheelchair. And then it really was just normal that that's the way it was. I can remember after about a year it was, it was going into remission. I think I was off the steroids by then and I think it was fairly normal. I was able to take part in sports and normal activities and I was in full remission. And it was that way really from '96 until about the year 2000 when I was about 13 when it just went into sudden relapse again. 

And that's when my memories sort of it really kick into place because I was 13. I can remember going from biking to school every day, walking to being immobile again and, and back to square one. 

Ok. And what about your teachers?

They were always aware of my problems and supportive. And they can be lenient for work if it's late or something they were always aware of it and never really penalised me for it.

And what about, did you take medicine at school?

I've never had take any at school.

But I mean if you were not feeling well, if you were in pain.

They let me go home. Yeah. But I never, I never did that. I never wanted to do that. But they moved my timetable so I was in a class with mostly downstairs lessons so obviously that helped me a lot, keep mobile and keep going to school.

Yeah I was lucky, very lucky that I didn't have any problems at school.

You went to a small school?

Relatively small high school. It wasn't big but, you know, you know everyone and everyone knows you. So everyone, I suppose it's a bit degrading everyone knows you as Joseph the one with arthritis but you didn't feel bullied or separate or different. But yeah everyone knew who I was and what my condition was. But it wasn't, they didn't treat me different or anything because of it.

I suppose if I'd been in a big school in a city and it being busier and more people I suppose there would have been groups of people that would have bullied you or, or treated you differently. But being in such a small environment it wasn't really a problem.

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. 

 

His PE teacher seemed not to realise the seriousness of his asthma and would sometimes ask him to...

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Age at interview: 16
Sex: Male
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I think what it is with P.E. teachers is they are. They don't know a lot about asthma and which means that they, they just see it as a thing like 'Asthma it's just a cough or something'. And they don't see that it can be life-threatening. And that, that's what I think makes them just want to, want to just force you to do sports sometimes and not. They just don't realise that some people are just genuinely can't do it sometimes and they just do see it as an excuse.

On the whole how has the school responded?

When I started my school originally there was. There's, there's been different P.E. teachers since I started and, and now. And the original one I had was really not, not good. He would force me to do stuff which I didn't feel as though I could do. And that caused me to have an asthma attack as well. But since I've had different P.E. teachers they, they seem to have a better understanding and I think that, that is because Asthma UK are getting into schools now and, and feeding information. I think it will gradually get better.

Just really that, that Asthma UK could start trying to get the message out to most schools just so, just so they do understand more about what it actually is and what they could or should be doing.

Ok. And when you had to take some time off when you were little how did the school respond then when you were in primary school?

Well in primary school I think they, they do see it more as a serious problem because you're a lot younger and they just feel as though if, if you're ill then you should be being taken care of properly. So they didn't seem to worry as much as like losing some education. But in, since high school I was off once for five weeks and  they just, they didn't really care. They were just sending work home and like you know, didn't really worry about me. Just that I wasn't getting my work done and that I couldn't, couldn't work in class or anything. So that's another thing that could be improved.

 

Talks about his primary school experience in Pakistan, his brother's experience in Britain and...

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Age at interview: 18
Sex: Male
Age at diagnosis: 3
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In Pakistan?

Hassan' Yes in normal school. I was the only boy in a wheelchair in school but they were made ready for me. They told all the kids that, 'A boy is coming to school. Don't make fun of him. He can't walk and take care of him.' So everybody was made to watch for me. So when I went there everybody was very polite. They said, 'Hello Hassan, good morning Hassan. How are you Hassan? Are you ok? How are you feeling today?'

Mother' Whereas in this country my younger son when he went to school, would you talk about that.

Hassan' Yes I'll tell you that. But whenever I used to go to school people would take my bag.

Mother' Read to him.

Hassan' He take hold of my bag and say, 'I'll get the book out for you.' My friend told me, 'I will'.

Mother' He never had a ' he could write at that time.

Hassan' Yes and, and my friends love me because they'll talk to me. Said, 'One day you'll play football with us, one day you'll walk.' I said, 'I hope so.' And I used to laugh, 'And maybe I'll win and you'll see when I walk'. So. And then they said when I was going to England said of, 'Take care and come back walking. You'll come back again'. And when we came here I didn't go to school. They're still finding a place for me to go to school. So that's why I'm tutored at home. 

And my brother when he goes to school everybody makes fun of him. It wasn't because, we were Muslim and then they talk about that you're a Pakistani, you're a Muslim and you've, you're a bomber and these weird things they just say. So [brother] was scared to go to school. Every night he couldn't sleep.

Mother' He was bullied so much.

Hassan' Said I honestly I don't want to go tomorrow, I don't want to go tomorrow to school. But my mom made him because he had to study. So one kid was making him so, feeling so bad that my mom told the teachers that, 'If you don't do anything I will do something.' The teachers got a bit scared. They said, 'Ok we'll tell, warn the boy'. So he was warned then he didn't bully [brother] ever.

We have gone to normal schools. I don't like it when I see other children in different.

Mother' The only difference that we have seen there in Pakistan and here we thought that people would be more accommodating and caring. Whereas in Pakistan, you know the attitude of children was given more sympathetic and kind towards them whereas here they are not which, which was very strange for us to find here. But I think I don't know what was, what is the reason basically. They make fun of the way he speaks. Of course they grew up in another country but they were still speaking another language so I kind of pacified my child by saying, 'That at least you speak more, more than. You know you speak two languages whereas they only speak English.' And so I'm always trying to give him a pep talk and back him up and tell him that, 'You know, you, you're better off. You're a better person. So you should be having a big heart to forgive them'. But he's had very, very bad.

Hassan' He has been very different.

M

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.

 

When she moved school she initially had a bad experience but her teacher encouraged her to give a...

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Age at interview: 17
Sex: Female
Age at diagnosis: 6
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At school any was anybody unkind to you? Did they know that you had diabetes, that you have to inject?

The diabetes can, everyone kind of found out through an integrated way, like, you get, when we first, when I first started this school a few people thought it was strange, I started with two people who had known me since I had diabetes and one of them kind of went in and she thought it was very cool to tell everyone that I injected and thought everyone got this idea instantly that I was like a drug user and that I was totally stoned all the time and they didn't realise really what was going on, but I spoke to my Form Tutor and she spoke to my form when I got there and she explained about my diabetes and she helped me to sort of explain to everyone there about what to do if I collapsed and, how to get through things and if I looked really pale to make sure I did my blood sugars and, like from then I got some books from my diabetes nurse and they, they were just pamphlets but they were very useful and I handed them out in my form room and people read through them and they sort of got an idea of what it was about and most of them hadn't actually heard of diabetes at that point so it was quite educating for them I think, but my main friends at the moment they, they've, they joined the school after that date so they've, in a way they've just kind of accepted it we've never really talked about my diabetes, but they, they join, they sort of joined a group that we were in and they, they noticed I was doing my insulin and they've asked me what it was, and they've asked me why I've done it but I think schools have been, they've, they've been very good, they explain what diabetes is in very small terms [laughs], but the explain it enough for people to understand that you need the insulin to live and, my friends they've, they've accepted that I need the insulin and they've accepted that I can't have sugary stuff all the time, so  when it comes to people's birthdays if they're, my two closest friends, they don't buy a lot of chocolates for me so, but they're really good they keep an eye on what I eat but.

They, if like they buy chocolates for each other they sort of, they wait until it's like lunchtime and, then they say would, would I like a little like Minstrel or something at the end of the meal and they make sure that I don't eat too much.

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.

 

Her condition affects her facial features and when she moved schools some classmates bullied her...

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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Has your condition affected your schooling in any way, I mean missing school or?

Well when I was in comp going to the local hospital it didn't really affect my schooling. But when I goes to London it takes a day, I think I've got to take off to go all the way up there. And I do miss a bit of work especially when I had the operation. 'Cause I'm in college at the moment all my assignments in. I'm behind on them because I had a week off, well I had two weeks off to look up. One week up there and one week to recover.

How was your nose, how was your face before the operation?

It was, my nose was a bit worse. It's tend, it's straightened my nose a bit. But the inside by there, is still. It is indented a bit. And this. When I was younger I didn't really notice because when I was in primary everyone just, just didn't really notice 'cause I was brought up with them and just. We was all in like a little group. 

But then when I started going to [name] Comprehensive School that was the time like when everyone was different people, didn't know me and they would look at me and that. And it was people that I didn't know that would ask questions. And to be honest I didn't really know what to say back to them because I didn't know much about it myself at the time 'cause it was only recently when I got referred. 

Was anybody unkind to you?

Yeah it was a few name callings but I just rose above them because, I don't know [laugh].

How did you feel at that time? How did you cope with that?

I did used to feel upset and just think, 'Why me, why couldn't it be anybody else?' But then I realised that there are people with worse problems than what I have got. And those are just the problems I've got to deal with and [laugh].

Tell me more about how you felt at that time. And did you lose some friends and that kind of thing.

It didn't start when I was seven. It started when I went, when I changed schools from primary to comprehensive, to secondary school. 'Cause it was new people that I didn't know and they was. They didn't know me and they was looking at me. And I just. I did feel like, a bit like pushed out. I, because they was looking at me so much then I would think that they were, like if somebody looked at me I'd automatically think that they were looking at my nose because it's the first thing that you see. And'

Carry on.

And when I was in school there were a few people that did say nasty comments but my friends would just cheer me up then and just change the subject and just move like, you know, just move on.

How did you feel about that?

I'd feel upset and I would sometimes cry but now it doesn't bother me at all.

But at that time.

But at that time it was new to me and it. It was new to me and I was just getting used to it myself and then I'd had people then saying stuff and it wasn't nice.

 

When feeling ill he becomes emotional and tends to cry. His fellow students at his all male...

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Age at interview: 23
Sex: Male
Age at diagnosis: 15
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And it was an all boys' school and when you are crying all the time. Because when I am tired all I can do is cry because I am so tired and it is just completely beyond me and I don't know what to do. When you are crying all the time, you know people think you are very wet and it is not particularly conducive to, you know people don't understand and you can't blame them. But it wasn't - I was pleased to leave. And it was difficult. I mean it is difficult being ill at school although having said that the school were very understanding. My housemaster there, you know the teachers were very understanding and very helpful in that respect. They were excellent. But I worked really hard and got good A-levels because I knew that I wanted to get A-levels to be able to move, you know get out of school and not have, I have always been determined, and my family, my parents have always been determined that this is not going to ruin my life. And it has to a certain extent sometimes you have just got to say fine, just go and lie down and relax whatever for a week or month or whatever. But I was determined to get good A-levels to go to a good university because I have always been in the hope that I will get better and if I got better but didn't have any qualifications then you know you are on a losing battle when you get there.

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').

 

She has a few ideas about how schools could help young people with chronic conditions not to miss...

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Age at interview: 22
Sex: Female
Age at diagnosis: 16
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There should be like policies in place for I mean working with students with long-term conditions. There should be like a criteria of things that should be available to them. So like, sort of like a minimum standard. So for example a minimum standard could be, if a student is off for a day, a minimum standard is that they can be, expect to be sent at least two pieces of work by email so they can catch up, so they're not so far behind when they get back. Or it could be to post work out. But do it without constantly being asked to do it. Because I found that I really had to ask this teacher, ask that teacher for work. And it gets quite on top of you. Because you always forget to ask someone for a piece of work. And then you fall behind just because you forget to ask someone for something. 

And also perhaps have someone that they can talk to, but not necessarily a teacher. Because you don't really want to tell things about your long-term condition about your teachers. Perhaps someone like as a go-between. Perhaps it could be someone who's like an older student. Perhaps not at the school, because you don't really want your business all going round the school. So perhaps someone who's, I don't know, is at a college or at a different school. And someone who's slightly older as well. So they, when they're conversing with teachers, they respect them a lot more and they listen to them as well.

What about asking a nurse to go and talk to someone at the school?

Yes, that would definitely be a good idea. Because they're, like if a person is a nurse, they've got a lot of authority as well because they've got a lot of knowledge, a lot of experience, a lot of training. So that would be a very good thing.

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'. 

 

Because she had so many physical problems she was off school for a year and a half. She has...

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Age at interview: 21
Sex: Female
Age at diagnosis: 12
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And I had a home tutor which was set up through my doctor and that was good but legally I was only allowed 4 hours a week which you know didn't really help. But I was quite a bright child and it was OK, I didn't miss out on too much. I think maybe, the only thing I did miss out on really was maths because I don't enjoy maths and I didn't do, I, I did all right in school  but I wasn't as good as I probably should have been so I re-did my GCSE maths  during the last school year because I wasn't really happy with that. 

When I went back in Year 10 and 11 I didn't really attend properly. It was probably only three days out of every five day week because I was still having not problems with my neck anymore, the pain just went away on it's own, I don't know what happened with that, it just sort of, I don't know, maybe I grew out of it or something, I'm not sure, but I still had it quite, quite painfully in my knees and my left arm and I think it, it was still there in my neck but it, it wasn't as bad but, it was, it became sort of the problem that I have now where I can't turn it properly and quite painful when you're hunched over a desk and writing all the time. So I did miss out on quite a bit of schooling, I think.

But I did OK. I didn't do as well as I probably could have done but I went on from there to do an advanced GNVQ in IT which I really did enjoy and that sort of, that really helped me feel a lot better about things, because I didn't enjoy school. It wasn't, it didn't do anything for me. But also at that time, I'd been in [hospital] a few times, for, for the neck thing and also because I had been on Methotrexate but  it wasn't, it was fine for a few years, it was really, really good for me and it helped but it, it didn't really help enough to get me to school but it did help with the pain and the stiffness.

I suppose it's natural really to hate homework. I don't know if anybody really likes it but that was one thing that I'm looking forward to doing without I suppose is  because, when you have arthritis you get home and it does take longer to unwind than everybody else. I, I think sometimes other people do say, 'Yeah, well you know I have to unwind as well, and it takes, you know, you have to have a certain amount of time', but they don't realise that there's pain in everything you do when you have arthritis, that, from my experience, maybe not other people's, but even if you don't have it badly in a joint it still hurts to use it and, but you get used to it, you learn to ignore it or not feel it but it, definitely pain in every movement and, small or big and standing on your feet is a lot more difficult and just hanging around all day. I don't know, I'm hoping I'll get to sit down in  my job. Looking for a place, you know, office with big comfy chairs so I'll be able to sit down a lot. But it does take a lot longer to unwind.

But I feel it was a long time before I really had proper treatment for it but because I was young they can't give you anything very strong because it can  damage you in the long term and give you long term health problems; stunt your growth, that's why I was kept off steroids for a long time. And I think that it wasn't really until I was on Indomethacin which was about I think 15, 16, that kind of age when I got Indomethacin. So from, from 9 to 15 I was in a lot of pain but I, I didn't really focus on it too much because I was young and when I had that year and a half off school with my neck that, I focused on that a lot, that was quite difficult but when I was younger I, I remember, I was still playing with the other kids and still doing the whole skipping thing. I used to skip a lot and it, it wasn't too bad. But there were some things that I couldn't participat
 

Wasn't able to do her GCSE exams but she was graded according to her coursework. She then went on...

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Age at interview: 18
Sex: Female
Age at diagnosis: 13
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That was, well I was doing fine at school then when I was put on dialysis I wasn't able to go to school to start off with because I was kept on the ward just to monitor everything, when I tried going back I couldn't, and that was just, well I couldn't take my GCSEs, because I was in hospital at that point, but I had managed to finish all my coursework before I went down hill, and then, from that they did my GCSE results, and I had good enough grades to go to college and things that I really wanted to do. So when it came to about September, I started college as I had intended to anyway, I really enjoyed it to start off with, but then, just as, I'd be sat there and I'd be doing really well to start off with in the lesson and then, everything else would just wander into my mind and I couldn't concentrate on what I was supposed to be doing, and I was very tired as well, and constantly feeling quite sick, so in the end I decided to leave that and then try again in the next September, and then I couldn't because about a month before I had a transplant so I was unable to, and I then tried to see if there was part time courses that I could do, but, no colleges locally were doing any at that point. So now I, next September I'm just hoping to be able to start some part time ones as well as if I can manage to hold down a part time job so.

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.

 

On those occasions he has been in hospital his mother and other relatives have approached the...

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Age at interview: 19
Sex: Male
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Can you tell me a little bit about that?

Yeah, primary school I spent, I was in hospital quite a lot and I did, like, suffer quite a lot but I, the, everyone, most of the people in my primary school knew that I had sickle cell and I was the only one in the whole primary school who suffered from sickle cell. But, they didn't really, at that time no-one really knew about it, sickle cell, even the teachers didn't know. And like, they wondered why I was off so much and they, primary school they didn't send the work at all. If, you know, I wasn't in, I would have to do the work when I came back. But it wasn't that bad. I was in hospital but I would probably go in twice a year and, you know, after that I would, I, the rest of the year I would be fine. But there was a time in my like when I suffered from sickle cell the most. So, I'm, it's now that it doesn't affect me, but back then, you know, it was much worse than what it is now.

Yeah, they have helped me but not a lot. They've, basically, the time of what, the time I was in my GCSEs, before I did my GSCEs in fact, I was in hospital. That was the last time I was in hospital. I was 15 at the time. And  I was there for, I think, two weeks, so I didn't really get to study that much. But they didn't, they, at that time they never sent nothing for me to revise over, but over the other few years, before I did my GCSEs they were helping quite a lot. And they understood that I had sickle cell and they understood the condition that I, I might be taking off a few days of school. But  they were supportive at times, not all the time. And'

And did they send you school work to do?

They would, sometimes. But not all time. Some, most of the time they, there was once a time I was off six weeks and they never sent no work to me, and my mum was really upset about that but apart from that, you know, I had to, once I was better I had to go back into school and I had to do the work that I'd missed, and catch up. So, in a way, you know, they never really helped but they have helped over a few years.

Did your mum do, sort of went to talk to the school when you were not getting the'

Yeah, yeah. My mum once, not, my mum's been in before to talk to them about what, you know, that situation and other family members they also went in, to talk, because they wanted to help me with what, you know, what had come out of it. But, I mean, they spoke to the head teacher and everything, they explained what I was, you know, that I, they explained that I was in hospital and everything and they said that they would send work and they didn't, at the end of the day they never sent my work. But, you know. I had to just come back and do the work and catch up.

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.

 

At the age of 11 started to attend a private secondary school and despite spending time in...

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Age at interview: 23
Sex: Female
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I think because I was quite ill when I was younger I was very shy. And because I used to be in hospital weeks at a time so that's why I was very shy and I didn't have a lot of friends because I'd miss long periods at school. So I was just quite shy and quite, kept myself to myself. So.

Because at eleven I started secondary school and I went to a private all girls school which was really good because the classes were really small. It was quite a small school. So if I did miss out on work there, you know, there was. The teachers were available to catch me up on things  you know, when I go back to classes because there would be maybe twelve to fifteen, maybe eighteen, maximum twenty people in the class which is not a lot of people. They were able to give me one-to-one attention but I never really was behind. I was always able to catch up whereas if I think I was in a more, I don't know, like a state school that had like a hundred people I wouldn't have been able to catch up because they wouldn't have been able to give me the time for that.

Yeah I went for. I did my GCSEs and I went through to do my three A-levels as well.

Ok. So you completed those. Ok.

Yeah.

Was there much interruption due to your condition during'

During my GCSEs  before then I was, I got quite ill and I got taken to hospital and I had pneumonia. So, but I was able to come out and still do the exams that I had missed. I was able to like retake them because I was in hospital and then some of them I had to do the year after because you're not allowed to retake them. So there was an interruption but I managed because I was staying in the same school to do A-levels I was able to. So when I was doing some of my A-levels I was taking some of my GCSEs that I'd missed.

And at this point when you were a teenager what happened to your social life? Were you still shy or...

No I got more confident and I think because even though I'd missed school because they weren't so many people in the school, it was quite a small school. So it was not like you'd get lost amongst friends or loads of people so even. And the hospital actually was next door to my school [laugh]. So when I was in hospital my friends used to come on their free periods, to come and see me. So that was quite handy.

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.

 

Early on he decided that as a young disabled person he would need all the qualifications he could...

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Age at interview: 23
Sex: Male
Age at diagnosis: 2
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This surely must have affected your schooling, I mean being six weeks in plaster and four months 'How did you manage?

Well  to be fair I missed a lot of time off school and if you added it all up it probably would come to years that I have missed, you know, I have missed an awful lot of time. I mean when I was off I did have home teaching, but it is not the same as actually getting into school. You know I fell way behind but I thought I had caught up basically. I have always managed to keep up. I mean I left school when I was 16 I got six GCSE's. I got six C's so I went to college and did three A-levels so I have still got the qualifications and I have always managed to catch up and sort of maintain that. I mean it is obviously hard, you know, extremely hard, but you know you just have to get on with it I guess, [chuckles] you know, you got no choice you know.

Okay. So what are your main motivations?

I mean I realise that because I am disabled, it is like anyone who is disabled and need to get a job, it is going to be a little bit hard. So in a way I am going to need all the qualifications I can get my hand on. And that is why I did my A-levels. I went and done my degree  so I have got all that. So now there is no reason why, because I have got all that, because I did catch up, because I did work hard, you know, I am able, you know, I have got as much chance of getting a job as anybody else. There is no reason why I can't get a job. You know I am not thick, you know I can - obviously there is issues out there regarding disability and jobs and it is hard for people with disabilities to get jobs. But I think if you have got the qualifications, you know, then that' you have got so much weight, you know, there is no reason why anybody can't give you a job. You know, I suppose it is your attitude as well, you have got to have a positive attitude. I mean I know people, that you know, they would just rather give up. You know what is all that about. I don't approve of'

You don't want to give up?

No. what is the point in giving up. I mean I have had a lot of ups and downs, I mean, I could have gave up years ago. But  I mean seeing how you only get one life don't you, so you might as well enjoy it.

 

Her epilepsy affected her memory and it was hard to do her Spanish A level course. Some of her...

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Age at interview: 18
Sex: Female
Age at diagnosis: 13
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And I'm 18 [laughs] Yes 18. Yes. And I am doing an Art Foundation course at [town]. Because that is pretty much the only thing that I am able to do at the minute  as my other studies went down the drain [laughs], because my memory disappeared [laughs] with my epilepsy. 

When you say your memory disappeared can you tell me more about it? And how old were you and '

About - I had absence seizures and which developed into tonic clonic's. And the absence seizures kind of got worse I suppose. I kind of - my memory started disappearing [laughs]. And it in the end affected my school work. And I went from being an A grade student to being a C grade [laugh] which is quite '

'. you say that now you are doing a Foundation Art Course. What else has changed?

I suppose just kind of' I mean I was good at art anyway and I wanted to do art because my mum was good at art so, and my grandma was good at art. So I suppose I was probably going to go and do art anyway. But it closed all other doors for me and it was just ' because I loved Spanish and I did several Spanish exchanges, and that was quite ' because I did a Spanish A-level. I had to stop doing that because I couldn't remember anything. And everyone else was going further and further and getting. Remembering everything, remembering all their verbs and everything and I couldn't remember. So I had to stop doing it in the end. Because I just got so depressed [laughs]. But art now makes me happy. Because you don't need to remember anything really. And in a way I speak to my art tutors even if you forget a skill that can be [laugh] quite artistic to forget it and do it, learn to do it again, as every painting you start from the beginning and to just keep smiling I guess. Just, I mean, me and my mum are kind of quite close and quite well known for putting a brave face on. So ' it is quite good really.

I still did my A-levels because I had to do them for art to kind of get into [town]. Well I could have gone to [town] to do my art A levels there but I wanted to try and do my Spanish one because I didn't know how my memory would be. I mean I got a B I think in my Spanish [laughs] at GCSE but I just couldn't cope with it, the A-level, it was just gradually getting worse.

Can you tell me about how you dealt with that depression, okay?

Yes.

Yes. Dealing with it as most people do. Music [laugh] always good, dancing around in my room just to kind of be out of the depression and how I feel and kind of curling up in a ball and crying and I suppose until I couldn't cry any more and then just kind of getting over it I suppose.

Did you talk to someone.

Yes I kind of had' I spoke several times to my head of year and she was very brilliant really but she understood everything. I mean she really did, she was great and I think most people went in there to cry to her [laugh]. She was great [laugh]. But yes, she really understood and she was fine with me just letting it go and I could just concentrate on art if it made me slightly happier because I really wasn't very happy at all with everyone just getting better and me just kind of sitting there and not understanding anything. Because that is how I felt. I felt that I was just, it was just all going over my head. And I was just sitting there like it was all, well in a foreign language basically [laughs]. But it was like all really really way over my head. Even though I should have been able to understand it I couldn't so [laughs] just gave it up, but yes. Just listen to heavy music really.
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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