Louise Robinson, Neuro-Oncology Outreach Nurse Specialist at East Midlands Children’s and Young Persons’ Integrated Cancer Service, tells us about educational support for young brain tumour patients.
Returning to school following a brain tumour diagnosis can be daunting for children and their families. However, education plays an important role in maintaining some normality during treatment and also in promoting recovery in the longer term.
During treatment
Many children are able to continue attending their own school during treatment, sometimes on a part-time or flexible basis. Others attend hospital school or participate in education at home. Most schools won’t have worked with a pupil who has a brain tumour before and it’s important that the school is fully aware of their pupil’s condition, treatment and individual needs. A specialist outreach nurse can deliver information, answer questions and provide a written care plan outlining everything the school needs to know.
Good communication will make sure that your child’s needs are fully understood and met, and allocating a key worker at school will help in making sure important information is shared effectively. The school’s special educational needs co-ordinator (SENCO) can arrange for appropriate support both during treatment and longer term. Within Nottinghamshire, the ‘Sam White’ ABI pathway is used to promote multi-disciplinary working between health, educational psychology and schools. Further information can be found at https://www.nuh.nhs.uk/clinical-psychology-and-neuropsychology.
Some pupils find it beneficial to share their experience with their peers/classmates. An outreach nurse or teacher can support this and The Brain Tumour Charity and Young Lives vs Cancer have excellent resources to assist with this.
After treatment
Once treatment has finished, a reassessment is recommended so that any ongoing difficulties are recognised. Consideration is given to the physical, psychosocial/emotional and cognitive needs of your child at school. Being absent from school, the location of the tumour and treatment strategies can sometimes affect learning, and a cognitive assessment undertaken by a neuropsychologist can help identify any areas of difficulty and in recommending appropriate strategies for school.
As your child moves through school, their needs and the educational demands on them may change. Therefore, it’s important that key information regarding their diagnosis is passed on to new teachers/settings and that school continues to monitor their progress and give appropriate support. Within the East Midlands Children and Young Person’s Integrated Cancer Service, a pathway is in place to ensure support is provided at key points. For example, starting primary school, moving to secondary school, or in preparation for formal examinations. Children and young people at key stages are identified by the neuro-oncology outreach nurse, and discussed with the paediatric neuropsychology team. Transition support is offered to ensure significant information is communicated with the school, and at this point a repeat cognitive assessment may be helpful and liaison with the SENCO is again invaluable.
Meeting the needs of young brain tumour patients in education is an ongoing process and the importance of open communication between the pupil, family and school can’t be overstated. Regular conversations regarding your child’s progress will help to ensure their requirements are understood, but support is available if you feel their needs aren’t being met.
Support resources for teachers
The Brain Tumour Charity
CCLG
https://www.cclg.org.uk/publications/School/Supporting-your-pupil-after-a-cancer-diagnosis/SUPPUPIL
The Royal Marsden and CEREBRA
https://cerebra.org.uk/download/returning-to-school-after-a-brain-tumour
Information, Advice and Support Services
https://cyp.iassnetwork.org.uk/in-your-area
The Child Brain Injury Trust (CBIT)
www.childbraininjurytrust.org.uk
The Children’s Trust
https://www.braininjuryhub.co.uk/information-library/return-to-education
Young Lives vs Cancer
https://publications.younglivesvscancer.org.uk/products/cancer-and-school-life
