How Should Schools Support Pupils With Serious Medical Conditions?
Four academics from Canterbury Christ Church University examine what schools need to consider when supporting children with serious medical conditions
Around 49,000 children and young people in the UK are diagnosed with a life-limiting or life-threatening condition. These conditions can include cancer, cystic fibrosis, epilepsy, spinabifida/hydrocephalus and Duchenne muscular dystrophy. Many of the children in question are taught within mainstream schools.
As medical advances continue to enable babies and young children to live longer than before, that number is set to rise. Some of those children will survive and live a long and healthy life; others will not. All, however, will be required undergo extensive, and often ongoing medical treatment that has a profound effect on their lives, their family, their friends and sometimes a whole school.
Our team recently carried out research with teachers, including SENCOs, to find out how they felt about working with children who have life-limiting and life-threatening conditions in mainstream schools. The teachers were clearly motivated to do their best for the child, their family, other children and the wider school community, but were also very anxious and clearly needed more support and guidance.
Government policy
Those teachers who had experienced working with children with life-limiting and life-threatening conditions explained to us the difficulties of getting professionals (from education, healthcare and other services) and the family together, so that they could provide integrated support for the child. The government is aware of this problem, and has produced a number of policies which aim to address it.
Integrated Personal Commissioning
This is a kind of overarching umbrella under which all the policies below fit. It is the government’s grand plan to integrate education, health and social services in England around individual children and their families, who will receive their own personal budgets to spend on the services they need.
National Framework for Children and Young People’s Continuing Care
This states that children who have complex medical needs and require specialised healthcare have the right to additional funding.
SEND Code of Practice: 0 to 25 years
Some children who have SEND will also have complex medical needs and sometimes life-limiting or life-threatening conditions; the SEND Code of Practice includes statutory guidance that schools must follow in such cases.
Supporting Pupils at School with Medical Conditions
Meeting the needs of children with medical conditions is now a statutory duty for schools, as outlined in the DfE guidance document ‘Supporting pupils at school with medical conditions’.
Our Commitment to You for End of Life Care
Sadly, some children with a life-threatening conditions will die. This policy document from the Department of Health contains a note on palliative and end of life care for children and young people.
Once a teacher becomes aware of a child with a life-limiting or life-threatening condition, the first task is to develop an individual healthcare plan. Teachers will work alongside the family, healthcare professionals and other key people to develop a comprehensive, individual and coordinated plan for the child.
The child is likely to have a key worker and a lead professional, such as a children’s community nurse, with whom a teacher will liaise. Integrated personal commissioning means that not only will the family have a budget for securing the services they need, but they will also receive guidance through the process of obtaining those services.
Common symptoms and challenges
The teachers in our research wanted to understand some of the more common symptoms and challenges experienced by children with a life-limiting or life-threatening condition, and how they could be supportive.
Children with complex medical conditions are likely to be very fatigued due to their symptoms, insomnia, frequent travelling to visit specialists and the side effects caused by various medicines and treatments such as chemotherapy and radiotherapy. Be flexible, plan work in short bursts and make maximum use of the times when children are able to concentrate.
These children will be experiencing a roller-coaster of emotions, so don’t be surprised if they find it difficult to think and remember in class. Focus on providing work in small amounts and provide plenty of prompts to aid memory. Make learning as multi-sensory as possible.
A child’s condition and treatment may also impact on their breathing, leaving them with less energy. Enable the child to complete their activities by either providing sufficient time and/or adjusting the scope of the activity. Consider alternative ways of including the child with their peers, such as giving them the role of timekeeper.
Self-esteem, diets and absence
Children who lose their hair through medical treatment will often feel self-conscious, develop low self-esteem and may avoid interaction with peers and other learning opportunities. Discuss this with the child and check whether or not they would be happier wearing a wig, hat or scarf to school. Normalise this by discussing individuality and differences among all children – perhaps organise occasions when all the children wear a hat for the day.
Children might additionally lose their appetite, feel nauseous or experience problems with eating and swallowing. Poor eating will impact on their energy levels and ability to concentrate. Some children might respond well to being allowed to graze, little and often, while others might prefer privacy when eating or require practical support. If they frequently experience nausea, ensure there is a sick bowl to hand and allow them to leave class if needed.
Children will inevitably miss school when they are unwell, due to health appointments or post-treatment recovery. Children who are too ill to attend school or have received prior permission to be absent can be excused from school, but Ofsted will want to know how children with complex medical needs are being supported.
Be flexible and prepared to work around their time schedule and wellness. Consider sending work home and using a virtual learning environment. Children who are away from school for long periods can become very isolated, so it’s important to keep in contact and find ways in which their peers can communicate with them on a regular basis.
Progress and hope
The DfE and Ofsted both acknowledge that pupils’ progress is not always linear. Children with life-limiting or life-threatening conditions are especially unlikely to achieve smooth academic progress. The school must be able to show that they are aware a child is not achieving the ‘floor/ minimum standards’ and why, and demonstrate how they are proactively trying to address it.
Above all, even children who know that their life is short need to dream, to have hopes and ambitions for their future – and teachers are perfectly placed to provide this.
Key advice
• Let the child know that you understand some of the difficulties that they are dealing with
• Regularly ask the child how they are feeling, what they are worried about and how the school might be able to help
• Provide plenty of encouragement and find ways of rewarding them for their achievements
• Use inclusive strategies that help them to feel part of their class and school and be sensitive to any self-esteem issues
• Be flexible when setting work; break activities down into chunks and allow extra time when needed
• Keep in regular contact with pupils on long-term absence, and encourage their peers to stay in touch too
