The Education of Children with Medical Conditions

Although Alison Closs had worked in the field of special and inclusive education for many years, research she and Claire Norris carried out in the late 1990s made her realise that she still had plenty to learn about the subject.

The result of that discovery was 'The Education of Children with Medical Conditions', a book compiled and edited by Alison and published in 2000, containing chapters written by affected young people, parents, siblings, and medical and voluntary organisation personnel, as well as by teachers and others in education. 

At the Special Educational Needs (SEN) Book Awards the following year (set up to encourage the publication of high quality books for children and for teachers working in the field), her book was runner-up in the Academic Book section.

On publication, the book was recognised as being the first of its kind to examine 'the issues which affect the participation, achievement and social inclusion of children with medical conditions in education. The contributors discuss areas of potential difficulty and suggest ways of developing more effective, efficient and empathetic provision, in and out of school.

'This comprehensive approach includes the accounts of young people, parents and siblings as well as professional descriptions and critiques of recent research, educational policies and practices within the UK.

'The book will enable education authority officers, school managers, primary and secondary teachers, educational psychologists, school medical personnel, support coordinators and advisers to acquire and apply in-depth understanding to the challenge of including these children more fully.'

When the book’s publisher, David Fulton Publishers, was taken over by a larger company, Alison took the opportunity of retrieving the copyright and has given Learning and Teaching Scotland an electronic copy of 'The Education of Children with Medical Conditions' for inclusion on what she describes as 'their brilliant website'.

Background to the book

Here, as an introduction to this new LT Scotland resource, Alison Closs talks about the background to her book, what she hopes teachers will get out of reading it and how it will benefit pupils with a wide range of medical conditions.

Now an honorary research fellow at the University of Edinburgh, she says:

'Until 2005, I was a senior lecturer in special and inclusive education at Moray House School of Education in the University of Edinburgh and between 1995 and 1997, Claire Norris, who was a full-time researcher at Moray House, and I undertook a joint research project into the education of children with medical conditions, particularly those with chronic and deteriorating conditions.'

Alison continues:

'Of all the research projects I have undertaken, this was probably the one that gripped me the most - and resulted in a very big report in 1997. I knew the report would be read by the Scottish Executive, because they had part-funded the project, and a few other people might read it, too. But a lot of the findings in our research were so relevant to teachers that I decided they had to be used as the basis for a book.'

Supporting teachers

Although Alison had worked in the area of special needs and inclusion for most of her professional life, she discovered during the course of that research project 'a whole lot of things that I would have benefited from knowing when I was a teacher in both the mainstream and special schools sectors'.

'And that,' she says, 'was really my main motivation in editing and producing "The Education of Children with Medical Conditions". David Fulton, the publisher who commissioned the book, also realised that it would be an important book for teachers because it recognised that children with medical conditions exist in every school and most classes and really need additional support.'

Although based on academic research and thinking, the book was particularly commended by the SEN award judges for its practical and accessible qualities. Alison agrees that it 'takes on board the experience of real people rather than just being a book that tells teachers what to do'. She says:

'One of my aims, apart from giving teachers practical support and advice, was to enable teachers to empathise more and work better with children and young people and with their families, and to enable children and young people and their families to work better with professionals.

'It’s also a book,' she continues, 'that recognises that this is an area of work in education which requires more than teachers and children. It requires collaboration across families, professional and voluntary organisations.'

Supporting children with chronic illness

In her book, Alison covers working not only with children with acute and even terminal conditions but also with children and young people who exist in what she describes as the ‘grey area’ between serious illness and disability, that of chronic illness. She explains:

'Disability is better understood in schools because it’s kind of tangible. But, in fact, there are a very large number of children who have significant long-lasting conditions, that affect them for a considerable period of time, who are in a kind of limbo in which they are neither so acutely ill that they have to be off school nor so well that they can perform like everyone else.

'I was particularly concerned about that area,' she continues, 'because I think teachers aren’t always particularly aware of those children whose conditions might be getting worse or might fluctuate a lot. Flexible attendance at school is sometimes an answer, so that some children who, perhaps, aren’t well enough to do a full day can come in part-time.

'That is the key thing about the recent concept of "additional support needs": it fosters a very flexible approach to supporting children, whatever the nature of the difficulty is and whatever kind of education they can cope with best.'

Special and mainstream schools

The book covers children being educated in both special and mainstream schools and out of school and it talks about children and young people who will get better but also about those who may never be fully healthy again and about those who may die. Schools can and must learn about how to cope with the death of a pupil. Alison explains:

'Nearly all children with acute medical conditions such as leukaemia, other childhood cancers and cystic fibrosis would almost certainly be in mainstream schools. Some of them first fall ill whilst in school. And one of the things that parents, and usually children themselves, felt very passionately about was that they should continue in their own school. That’s the environment they know and they have friends there, so they look for support there.

'Enabling schools to carry on educating their own pupils who had become ill was another important aspect that I hoped this book would contribute to. And enabling other children in the school to accept and be supportive of pupils who become ill is also addressed.'

Alison hopes that the book will bring home to teachers the fact that 'a child’s education is one opportunity for a child, even with a serious medical condition, to have some aspect of normality and of progression in their life'.

The chapter on education in hospitals and at home was written just before the legislation was changed in 2000, making it a statutory obligation for local authorities to provide education for children in places other than schools (in fact, Alison Closs drafted the Scottish Executive guidance on that legislation). But the chapter is based on best practice and is still just as relevant. Alison points out that, inevitably, some elements of other legislation referred to in the book, as well as some contact details in the resources section, may also be slightly out of date.

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