It is estimated there are currently 15 to 20 thousand children with life-limiting conditions in the UK. Each year in the UK around 1,700 children with life- limiting conditions die before the age of 19.

Young people with life-limiting conditions are living, and participating in the community, for longer as a result of developments in technology and improvements in medical care. These in turn facilitate their continued presence in school.

Provision of play and education is essential for children with life-limiting conditions, because most children whose symptoms are stable will want to enjoy as much normality as possible with their peers. Schools play an essential part in the life of these children and their families. It is desirable that children remain in school for as long as possible to allow peer support and provide stimulation through continued education in addition to social and recreational activities.  

However, in a survey by the Association for Children with Life-threatening or Terminal Conditions and their Families, only 37% of the professionals surveyed believed that educational provision was adequate and only 8% of parents surveyed described education services as working well for them and their children. 

Although the Department for Education and Skills (DfES) in its guidelines Access to education for children and young people with medical needs states that ‘enabling children and young people to access education appropriate to their medical condition is important to their future mental and physical development', there are no guidelines for the adjustment of the National Curriculum in mainstream schools to take account of these children's needs.

The findings of Aptitude Trust suggest that there are no research projects currently being undertaken in this field. Aptitude Trust believes that the development of educational guidelines for life-limited children is an important research area so that we can ensure that all children continue to enjoy and benefit from education for as long as they are able to do so.

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Project Aims

Resources

Sources to be researched

Outcomes of the project

Impact of these outcomes

Acknowledgements