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‘I feel like a ghost’ are the words spoken by my then 12-year-old daughter about her experiences attending school in the UK on a very part-time basis due to a chronic health condition (CHC).

Children and young people (CYP) who have a CHC – whether physical or mental – are often unable to attend school due to their health and the need to attend medical appointments. Anecdotally it can be difficult to catch up with missed learning due to low energy levels, and they may fall behind their peers despite still being academically able. These young people may lose touch with their friends, lack a sense of belonging (‘like a ghost’), and be administratively excluded such as by not receiving communications about school events. Their low attendance may lead to schools ‘off-rolling’ to other provisions (Done & Knowler, 2021), while their unmet needs can cause some to leave the formal school system into ‘coerced home education’ (ibid., p. 1041). Parents/carers of CYPs with a CHC sometimes have to resort to legal action to obtain suitable education for their children (IPSEA, 2025), and guidance documents can need clarification for educators and practitioners (UNISON, 2025).

These factors raise questions about the impact on this cohort of the current hegemonic education policy priorities of attendance and attainment.

Capturing the lived experience of inclusion/exclusion

·¡²Ô²µ±ô²¹²Ô»å’s (p. 80) states that pupils should have the opportunity to ‘fulfil their potential’. Further statutory guidance is available for settings on , stating that CYP should have ‘full access to education’, that ‘arrangements are in place to support’ them, and that school leaders should work with a wider team of professionals ‘to ensure that the needs of children with medical conditions are properly understood and effectively supported’ (p. 4). Our family experience was not this, and anecdotally others have had similar – or worse – experiences. Through gatekeeper permission and snowball sampling recruitment from June 2024 to February 2025, the study on which this blog post is based, set out to learn how included CYP with a CHC feel in their education through collaboration with children and young people, parents/carers and educators/practitioners across the UK. With a Lived Experience Advisory Panel (LEAP) of CYP with CHCs, we sought collaborators’ lived experiences of inclusion, rather than exclusion, to discover best practice and consider how to improve the current environment.

Cogeneration of knowledge

Although data analysis is still under way, insights show that CYP collaborators can indeed define ‘inclusion’ and that it is broader than DfE documents suggest: inclusion encompasses physically being present in an education setting, learning at an appropriate level with support and challenge, mixing with peers and friends, and experiencing a sense of belonging. As one seven-year-old put it: ‘That everyone is asked if they want to play. People get help if they need it.’ A further quote is pictured in figure 1.

Figure 1: Quote from a collaborator

Parents/carers whose children are home educated or are attending special schools reported highest overall levels of satisfaction in their perspectives of inclusion. A Blob Tree was used during interactive discussions to capture some of their experiences (see figure 2).

Figure 2: Blob Tree composite of parent/carer responses, reproduced with kind permission from Ian Wilson, co-author of The Big Book of Blob Trees (2009)

Meanwhile educators/practitioners recognise that good practice is evident but not widespread, offering examples such as gaining knowledge and understanding of health conditions, hybrid/flexible strategies, and employing holistic approaches. They also identify areas for further support, including training, multi-agency liaising and sharing good practice.

Towards transformation of practice and policy

‘As long as the current education system prioritises attendance and attainment, children and young people with chronic health conditions will continue to experience exclusionary practices.’

While all collaborators can identify what inclusion could look like for CYP who have CHCs, lived experiences suggest that there is room for improvement. Outcomes from this research will provide further answers on how to instigate transformation in practice, such as through the development of information for parents/carers and training for educators and practitioners. Findings so far suggest that these initiatives would be welcomed. However, further change is needed at policy level, by raising awareness of this cohort through the cocreation of a ‘manifesto’ that conveys how to ensure that CYP with CHCs are listened to, and that inclusion is central to their lived experiences of education. As long as the current education system prioritises attendance and attainment, CYP with CHCs will continue to experience exclusionary practices.

References

Done, E., & Knowler, H. (2021). ‘Off-rolling’ and Foucault’s art of visibility/invisibility: An exploratory study of senior leaders’ views of ‘strategic’ school exclusion in southwest England. British Educational Research Journal, 47(4), 1039–1055.

Independent Provider of Special Education Advice [IPSEA]. (2025). ½¿É«µ¼º½ us.

Long, I., & Wilson, P. (2009). The big book of blob trees. Routledge.

Pascal, C., & Bertram, T. (2012). Praxis, ethics and power: Developing praxeology as a participatory paradigm for early childhood research. European Early Childhood Education Research Journal, 20(4), 477–492.

UNISON. (2025). Supporting pupils at school with medical conditions.