Louise Robinson is a neuro-oncology outreach nurse specialist at East Midlands Children’s and Young Persons’ Integrated Cancer Service. Here, she emphasises theimportance of collaboration and explains how a support pathway helps young patients with their education.
The return to education following treatment for a brain tumour is an important step on the road to recovery. However, it’s essential that schools have a good understanding of the child’s condition, and any new or emerging needs to ensure appropriate support strategies are in place.
For many children, attendance is possible during treatment, although often this is on a part-time basis or includes some home education or remote learning. Others may have prolonged periods of absence from education. Before returning to education, consideration should be given to the physical, psychosocial and cognitive impact of the tumour and its treatment, and any ongoing issues discussed with the school. A face-to-face or virtual meeting between the family, school and relevant health professionals can be an effective way of ensuring schools have a good understanding of pupils’ requirements.
The special educational needs coordinator (SENCo) is a key contact to involve and should oversee this process. An oncology outreach nurse with experience supporting children with brain tumours can enhance communication ensuring relevant information is provided, including written information and signposting to be shared with the wider educational team.
Though it’s essential to provide appropriate information at the time of the initial return to school, ensuring that this knowledge is shared as the pupil progresses through education is equally important. This is especially true as children progress into secondary education, and pupils move from having one main class teacher, to working with multiple members of teaching staff. At the same time, expectations also often increase – not purely relating to academic work but also in terms of independence and social and behavioural aspects. Another important time point is preparation for formal exams. Access arrangements such as the young person being given extra time or rest breaks may be appropriate, and planning should begin well in advance of exams to ensure any arrangements become the pupil’s normal way of working.
In the East Midlands, the neuro-oncology outreach nurse and neuropsychology team have created an ongoing support pathway where children treated for a childhood brain tumour are screened at key educational points to ascertain the need for cognitive assessment and additional support. Recommended intervention points include:
- starting pre-school and reception
- year 5/6
- transition to secondary school
- year 10/pre-GCSEs
- post-16 transition
As children progress through education, requirements may change or new needs emerge, therefore it’s essential that schools have regular and open communication with families. Support is available via specialist nurses and the multidisciplinary team or via the sources listed in the pull-out box.
If you feel your child’s needs aren’t being met
This should, in the first instance, be discussed with the school SENCo. Funding is available to all schools to provide additional support, though for children with complex needs, an education, health and care (EHC) needs assessment may be helpful (see page 19). If granted, an EHC plan confirms the legally required support for the pupil and, in some local authorities, comes with additional funding. All local authorities must, by law, provide information and advice for children and young people with special educational needs or disabilities, and their parents. There is an information advice and support service in every local authority area. Details of this provision can be found in the local authority’s local offer website.
Resources and sources of support
The Brain Tumour Charity | Edcation resources
Young Lives vs Cancer | My student has cancer
GOV.UK | SEND: guide for parents and carers
Child Brain Injury Trust | Childhood Acquired Brain Injury: The hidden disability
The Children’s Trust | Returning to education
From Contact magazine issue 103 | Summer 2024
