The Invisible children report highlights the concerning experiences of children and adolescents who due to long-term illness cannot attend school.

Following a seminar with participants from schools, health services, No Isolation and parents, as well as, children and adolescents suffering from long-term illness, new light has been shed on the issue of ‘Invisible children’ in the UK. The findings were presented in the report 'Invisible children: Serious illness, prolonged school absence and long-term impact.'

We need clear national guidelines

The Invisible children report highlights the concerning experiences of children and adolescents who due to long-term illness cannot attend school. This cohort, a statistical group, of children has been dubbed the ‘Invisible children’ due to their lack of representation in national data sets.

An unknown number of seriously ill children are slipping through attendance statistics. The methods of record-keeping are inconsistent throughout the UK, and there is no central database keeping record of the actual size of the group. A distressing consequence of this is that the effects of long-term illness are widely unknown, making the problem appear smaller than it actually is.

Incomplete data

During the seminar discussion the Department for Education explained that of the 783,400 children recorded as ‘persistently absent’ in 2017/18 (with an overall absence rate of more than 10%), almost 42% missed school due to illness. But as there is no standardised way to define illness, the data is incomplete and unreliable, both locally and nationally.

Local authorities do, however, have data on the number of children and adolescents who receive home education, but are completely in the dark as to the ‘reasons why’ they are homeschooled. When a child is off-rolled the school is required to inform their local authorities, but they do not have to provide a specific reason explaining why. Not knowing the cause of the issue, both individually nor as a group, makes it difficult for cash-strapped city councils to provide appropriate support.

The negative effects of school absence

Experiences and data clearly show that when a child misses out on education, even for a short period, the consequences have the potential to hurt their long-term progress, as a whole. Missing out on specific subject information required to pass exams, consequently opportunities in a society and job market, where grades are the benchmark to differentiate applicants.

In addition confidence can easily be damaged as friendship groups advance without them, making reintegration to the classroom and the playground a daunting, and sometimes impossible, task. Once you ‘fall off’, you risk lagging behind, and the consequences of this can last well into adulthood, as university and employment opportunities suffer from the effects of early school absence. Not only does it affect the individual’s economic circumstances, but no one knows the full societal cost and impact of these Invisible children falling out.

"3.5 years of isolation due to illness has had a significant impact on my son’s mental health as well as his education. He is no longer the socially confident boy he once was and now struggles to interact with children his own age. Isolation is used as a punishment in various establishments, more should be done to ensure that children isolated due to physical or mental illness do not feel punished, rejected and socially excluded." - Mother of a child with cancer.

Short term solutions

Attendees at the seminar remarked that they had witnessed excellent provision, from dedicated school staff, to inspirational hospital schools, as well as more progressive approaches such as using the AV1 robot enabling children to attend school remotely. However, there was also a wide belief that not all children have the option to receive this kind of provision. There are pockets of excellent practice driven on an individual and local level, but there needs to be systemic change at a policy level, to ensure everyone is supported.

Solving the issue

Educational provision for children out of school due to illness appears to be somewhat of a postcode lottery, with some families having to fight for 3 hours of home tuition a week, whilst others are offered 15 hours by default. This is thought to be, in part, due to the open statutory guidance which allows for flexible interpretation of government guidelines, as well as financial limitations schools and city councils face.

Looking forward, the first step to improving the lives and outcomes of this group of children, is to create a more accurate view and analysis. This can be done by joining up existing data sets, asking more and better questions through the Millennium Cohort Study (UCL Centre for Longitudinal Studies) and building a model to predict future numbers of children falling out, enabling greater levels of proactivity. This could in turn, cause the issue to rise up the political agenda and drive much needed changes to statutory guidance. Most importantly, it would lead to more support for Invisible children across the UK.

Download the Invisible Children report.