School and education: What to expect after a cancer diagnosis

Parents of children who have been diagnosed with cancer often have many questions surrounding schooling and education. Lucy Gwynne, Neuro-Oncology Lead Cancer Nurse Specialist at Birmingham Children’s Hospital, explains more about what to expect.

Why is communication so important?

When a child is diagnosed with cancer, it’s unfortunately inevitable that their attendance at school will be disrupted for a period of time - usually, until their health or treatment plan allows their return. But getting back to school in a safe and manageable way is vital for children with cancer and open and honest communication between yourself, your child, the hospital and their school is key. Remaining in regular contact with your child’s school will be vital in allowing them to return as soon as they can, and ensuring their educational needs are met both while absent and upon their return.

What support will we receive, while my child is away from school?

Most cancer centres have hospital schools to support your child. The teachers there will communicate with your child’s regular school in order to continue their education, covering topics that they’d be learning about in their usual classroom.

Home tutoring is available for those that are at home but unable to attend school due to their health, treatment plan or both. There are regional variations in how this is actioned and also in the availability between local education authorities. If you feel your child will not be able to return to school for some time, it’s crucial to inform their school as soon as possible and ask what home tutoring input is available. Home tutoring can be requested via your child’s school, or in some cases, the hospital school.

Recently, schools have become more accessible and many are able to provide remote learning opportunities (via Zoom, Skype, Teams), so it’s always worthwhile discussing the options available to your child with their school.

When will my child be able to return to school?

Shortly after diagnosis, your child’s healthcare team will advise on what point during treatment your child is likely to be able to return to school. This very much depends on your child’s diagnosis and treatment plan. The majority of patients return to school as soon as they feel able, though we tend to find that children’s attendance at school is sporadic and will wax and wane throughout treatment. This can be due to periods of hospitalisation, side effects of treatment, supportive care and treatment itself. Schools are usually very flexible and will allow a reduced timetable or shortened days.

Some children do manage to return full time and will only be absent for hospital appointments, while unfortunately, in some circumstances, it won’t always be possible for a child to return during treatment and for a period of time following it. It really does vary between children and therefore, it’s really important to discuss your child’s needs with their school and oncology team.

Why are children encouraged to go to school whilst receiving cancer treatment?

School is a huge part of a child’s life, providing structure and stability for many children. Attending school during treatment will have a positive effect on both your child’s mental and emotional wellbeing. It will not only enable them to continue with their education and development, but help reduce feelings of isolation and them to feel ‘normal’ as attending school allows them to stay in touch with their friends and peer groups. By supporting their attendance, you’re encouraging them to maintain and build friendships while promoting their personal development.

How will their return to school be facilitated?

Often, with your consent, your healthcare team will liaise with your child’s school to update them shortly following diagnosis. Initial contact is made with a nominated professional via the telephone and information is shared. The professional you choose for them to contact could include but is not exclusive to: a headteacher, teacher, school nurse or special education needs co-ordinator (SENCO).

The information shared during this initial contact usually includes your child’s diagnosis and an overview of their treatment plan and is only information that you – and your child - have consented to share. During this initial discussion, contact details for your child’s healthcare team (usually a cancer nurse specialist) will also be shared with your child’s school. They’re then able to contact your child’s team should they require further advice and support.

Dependent on diagnosis and treatment, further discussions will be held or arranged to facilitate your child’s return to school and are often arranged during the initial contact. Usually, a meeting is held when your child’s planning to return to ensure information is shared to keep your child safe in school. Your child’s individual medical sheet/care plan will be provided along with other resources. We suggest a phased or gradual return initially and schools will support a gradual return and/or reduced timetable for as long as needed. They should also nominate a key adult at school that your child can go to.

What will the medical sheet/care plan include?

Medical sheets and care plans vary depending on a diagnosis and treatment plan. They may also vary depending on what region your child is being treated in. However, regardless of their diagnosis, treatment plan or the area in which you live, the medical sheet/care plan will include any issues that need to be considered when your child is in school. The purpose of the medical sheet/care plan is to keep your child safe in school and emphasises to staff the importance of prompt action if your child becomes unwell.

This may include information on:

Side effects of treatment and any signs and symptoms that need to be acted on, should they develop while your child is at school
Poor immunity (how to action any signs of infection, such as a temperature, and prevention of infections, like regular handwashing)
Central venous devices
Chicken pox/measles contact
Flu vaccines
Tiredness and physical limitations
Mental/emotional wellbeing
Changes in physical appearances
COVID guidance

What is an EHCP and will my child need one?

An EHCP is an Educational Health Care Plan. They won’t be required for all children that are diagnosed with cancer, but for those with special educational needs. With some diagnoses and/or in certain circumstances more specialist support will be required for your child to return to school. In this situation, education and healthcare professionals will work together with you to assess your child’s needs. And, if deemed necessary, a formal assessment of your child is completed by your child’s local authority. An EHCP’s aim is ensure a child’s educational, health and social needs are met. If you feel your child will require a EHCP please discuss with their school or healthcare team.

Why is my child reluctant to return to school and how can I help?

Many children are happy and excited to be returning to school. However, sometimes this isn’t the case. Some children may feel anxious and worried about returning, which is a completely normal response during or following cancer treatment. You can help by listening to your child and by talking through any concerns and worries they may have. Such anxieties could be, among other things, about: