Advocating for the CF community’s social, emotional, and mental wellbeing in primary and secondary education

Working with our partners as part of the Health Conditions in Schools Alliance, the Trust have fed in to the National Institute for Health and Care Excellence (NICE) consultation on social, emotional and mental wellbeing in primary and secondary education. We have provided comment and critique on the draft guidelines NICE have drawn up, which cover ways to support wellbeing in children and young people in key stages 1 to 5, and people with special educational needs and disabilities up to and including age 25, in further education colleges.

As members of the Alliance, we welcomed the guidelines and their intention to help ensure all children, regardless of circumstance or background, are able to flourish in education. We highlighted that for children with health conditions, such as cystic fibrosis, extra consideration will be needed, especially for those where managing their condition can be a major barrier to getting the most from their education. 

We supported the Alliance’s recommendation that a school's approach to supporting pupils at school with medical conditions be led by a medical conditions policy – a legal requirement for schools in England. Our response called for specific mention of such policy to be made in the guidelines, alongside an accessibility plan.

We also support the recommendation that every pupil with a medical condition in school should also have an Individual Health Plan (IHP), an agreement between parents/carers, the school and healthcare professionals about what care a child needs and how it will be carried out.

Our response highlights the increased mental health risks that children with health conditions like CF face, which has already been made clear in the Department for Education (DfE) guidance ‘Supporting pupils at school with medical conditions’ (2015). 

“In addition to the educational impacts, there are social and emotional implications associated with medical conditions. Children may be self-conscious about their condition and some may be bullied or develop emotional disorders such as anxiety or depression around their medical condition. In particular, long-term absences due to health problems affect children’s educational attainment, impact on their ability to integrate with their peers and affect their general wellbeing and emotional health.” - Supporting pupils with medical conditions at school - GOV.UK 

Our response stressed that, although these guidelines do well to acknowledge the impact of complex and long-term medical conditions on social, emotional and mental wellbeing we feel they need to go further in addressing this association.

Consistently we asked that school policies and positions, whether whole-school medical condition policies or individual healthcare plans, be co-produced with pupils, parents, school staff and nurses, and where appropriate, relevant local health services.

This approach should centre the voices of children and young people in discussions about their healthcare. Whilst the guidelines made some commitment to involve children and young people in discussing and agreeing whole-school approaches, we want to see this commitment strengthened with specific suggestions on mechanisms to include children and young people in these discussions, and to make this point robust enough that schools do not have an easy way out of undertaking meaningful participation.

We were encouraged to see the guidance mandate taking into account DfE’s own “education, relationships and sex education, and health education guidance” in developing universal curriculum content. This guidance leaves no doubt on making the connection between physical and mental health, advising that primary school pupils should be taught to “understand that good physical health contributes to good mental wellbeing, and vice versa” and education should “include information about the prevalence and characteristics of more serious mental and physical health conditions” for secondary school pupils.

Throughout the response, we wished to highlight the unique challenges of those with long term conditions, like CF, which sometimes fall outside those considered under the special educational needs and disabilities described in the guidelines. 

We also highlighted the key areas we felt the guidelines failed to fully address. Although the guidelines tackled the transition for pupils between schools, we would be keen to see these guidelines expand to include the transition from secondary school into further or higher education, employment or unemployment. We would also encourage a focus on where extra-curricular activities fit into supporting children and young people’s wellbeing.

We hope that NICE take forward our comments to deliver guidelines that will see the CF community in schools get the necessary wellbeing support they need to see them thrive.