One of the saddest and most challenging parts of being a school leader is when pupils suffer from a chronic or recurrent illness. It could be headaches, chronic pain, fatigue or mobility issues. It could be a genetic condition such as cystic fibrosis or a disease such as cancer. It could be a mental health problem like anxiety or psychological distress. Whatever it is, the school needs to step up and offer the best support possible.

But, unfortunately, we too often fall short, not through a lack of trying but through a lack of support and understanding.

Although there is legislation to govern the way schools accommodate pupils with medical needs, there is still no national standard or independent quality assurance in place for schools to measure their performance against. In the most extreme cases, parents are removing their children from school because they just can’t cope without the right level of support.

I know from first-hand experience how difficult these things can be. I’ve been teaching for nearly 30 years, with more than 20 of those years spent in senior leadership roles in a mainstream secondary. Like most mainstream schools, we taught a small number of young people each year who were suffering from medical conditions. We had a robust and considered protocol for supporting them; day-to-day responsibility fell to our experienced special educational needs and disability coordinator, while everyone else did their best to understand and accommodate the pupils’ needs.

But there were times of significant insecurity along the way: what special arrangements should we be making? What should we do in an emergency? What should and shouldn’t we say to the pupil and to their classmates? How should we communicate with parents?

When I took up my new post as head of Oxfordshire Hospital School, I became part of a pioneering initiative helping schools like those I had worked in to find answers to these questions. The Medical Needs in Schools (MNIS) project is a partnership between the Oxfordshire Hospital School and Oxford University Hospitals NHS Foundation Trust. Its guiding rationale is to build closer links and collaborative working practices between schools, hospitals and local mental health services. Health and education practitioners haven’t always been good at talking to each other, despite there being so much to gain from sharing knowledge.

An essential part of our role as a hospital school is to advocate on behalf of young people with medical needs; it makes absolute sense for us to extend this know-how to help support children with medical conditions who are able to attend mainstream settings. Our aim is to provide a holistic package of support for schools, and to promote the inclusion of pupils with medical conditions without restrictions or limitations. We also plan to create a blueprint of best practice that can be used in other parts of the country by hospital and mainstream schools as well as their local authorities.

In the meantime, there are steps that every school can take to ensure they are doing their best for pupils and meeting their moral and legal obligation to give every child access to high-quality learning regardless of medical need.

Proactive planning

The bottom line is that all schools must have a medical needs policy in place and be using individual healthcare plans (IHPs) for each pupil with a medical condition as part of their usual practice (for more on schools’ legal duties, see the Children and Families Act 2014). Unfortunately, in many schools, the use of IHPs is still patchy and misunderstood.

Utilised properly, the IHP can make life much easier for pupils and staff. It offers schools a great opportunity to explore everything they can do to make school life as accessible as possible for every pupil with a medical need.

For example, it can cover: part-time timetables; time out during the school day; individually adapted work; work to complete at home; a dedicated support worker to liaise with the pupil’s family; and somewhere private to eat lunch or take medication. It is best framed in terms of how to make things go right, and should include special situations such as trips and exams.

Once agreed, the IHP must be visible to all parties, including the child’s teachers, healthcare team and family, with the opportunity to review and update details over time. This point is really important because a young person with a chronic condition may need different support at different times throughout the course of their illness. It’s vital that everyone understands the plan and how to implement it so that this happens consistently. This is a real challenge for any school but more so for a busy secondary where pupils have contact with many members of staff.

Good communication is essential when it comes to devising a plan and getting buy-in from all parties to implement it successfully. Ideally, the school representative, family members, healthcare team - and, importantly, the child where appropriate - need to meet face-to-face in the same room. This sounds obvious but it’s common for schools to find that coordinating these discussions is difficult, especially when the child’s healthcare team is spread over more than one discipline.

Interestingly, the duty to support pupils with medical conditions (see section 100 of the Children and Families Act 2014) applies to health as well as education, although schools tend to feel responsibility falls predominantly on their side. There are many healthcare professionals and charities who will offer advice to schools on how to support pupils; the school nursing team can be an essential resource in the planning stages.

Best practice

In our work, we see many excellent examples of schools that are getting this right. For instance, pupils feel more supported when the health needs of the whole school community are valued and talked about openly. Schools that offer regular sessions in mindfulness, self-esteem, managing anxiety and dealing with failure as part of the wider curriculum are also providing outstanding support for pupils with complex medical needs. By proactively seeking to understand and accommodate mental health needs, they are better equipped to accommodate children with medical requirements, and so improve their life experiences and academic outcomes.

In other cases, schools are harnessing the power of technology to make it easier for pupils with medical conditions to access mainstream education. These tools can range from online planning systems to share information with all parties, including parents, to “telepresence” robots, which give pupils the chance to take part in lessons and extracurricular activities with their classmates and teachers, despite not physically being at school.

The Oxfordshire Hospital School has developed a simple self-assessment and review tool to help schools better understand children’s needs. Staff work alongside schools as they complete the assessment and offer guidance for creating action plans and support to achieve even better outcomes for pupils.

The advice provided is wide-ranging, from adjusting seating plans to providing safe spaces and accessibility reviews. It’s about making reasonable adjustments for vulnerable children. Schools want pupils to attend; we offer advice on how to achieve this for pupils with medical conditions.

Back in Oxfordshire, the MNIS project is a way for us to share examples of where things are working well and to create a permanent community of teaching and health professionals, which will be a source of ongoing support and best practice for our local schools. Together, we hope to show that inclusion is not just about fitting in; it’s about accommodating an individual’s needs without restrictions or limitations and, in the context of children with medical conditions, what is achievable.

Our hope is that our work will have an impact for children with medical needs and their schools right across the UK. To do that though, it’s vital that we generate the sort of national profile that this issue deserves, alongside clear guidance and strong, national quality assurance measures.

Steve Lowe is headteacher of the Oxfordshire Hospital School, which won the Innovative Use of Technology to Influence Outcomes Award at the Tes Schools Awards 2019

This article originally appeared in the 9 August 2019 issue under the headline “How to ensure better treatment of pupils with medical needs”