Notes from a PowerPoint presentation at the Vancouver conference, September 2005

As it was recognized that brain tumor patients need very specific support – not only in the hospital but especially when they return to school, we decided to produce a folder with information and guidance to teachers about how best to help pupils with a brain tumour.

All brain tumor patients in the Secondary school age (11 – 19) treated at the Royal Marsden Hospital in Sutton who were off active treatment and presently attending school where asked to get involved. 63 patients and families had been approached of which 33 gave consent. We also asked teachers to involved: 30 head teachers and 29 teachers agreed.

It was decided to include into the folder general information on:

    -  Background information

    -  Returning to school

    -  Difficulties in the classroom

    -  Useful contacts, terms and references

As well as individual information about each patient such as:

    -  Individual information sheet

    -  Types of tumors

    -  Treatment

    -  Side-effects: immediate and delayed

    -  Follow up – monitoring

Returning to school

Before a student goes back to school, the teachers have to be informed about:

    -  possible changes in appearance and behaviour

    -  how they can arrange keeping in contact with the patients and the patients with their class mates

    -  how to support the siblings

    -  how to arrange home-tuition, when needed and all about the risk of infection

We realized that teachers would have to be prepared for the difficulties which might occur in the classroom and will include information and guidance in the brochure on topics like:

Fatigue:

    Ways to signal need allowances

Emotional Difficulties

    Different looks

    Changes in ability

Behaviour

    Angry outbursts

    Irritability

    Attention seeking

    Withdrawn

Social Problems

    Bullying

    Social isolation

    Sharing and taking turns

Cognitive Difficulties

    Gradual decline in IQ and performance

    Adjust expectations

    Modify the curriculum and teaching style

Concentration & Attention

    Reduce distractions

    Give simple instructions

Memory

    Difficulty with Maths and Languages

    Establish routines

    Provide memory tools

Speech, Language and Communication

    Impaired social language = ‘geek’ & ‘weird’

    Use prompts, frameworks and feedback

Vision

    Confusion and social isolation

    Enlarge worksheets

    Use a laptop

Hearing

    Use ‘Direct Audio Input’

    Provide visual support and instructions

Mobility and Motor Skills

    Arrange for easy movement to classes Handwriting affected?

    Use pencil grips and adapted equipment.

Based on our experiences so far, we recommend that every young person treated for a brain tumour should be placed on the ‘Special Needs Register’. They should remain there for their entire school career. It should ensure regular monitoring of cognitive, social, emotional and physical deterioration or progress.

Once finished, The teachers guide will be distributed through the Royal Marsden Hospital and available to 20 other paediatric brain tumour treatment centres in the UK. Follow-up seminars for teachers as well as parents are planned and we are working on the set-up of a Website.

Further Information:

Bette Petersen-Broyd

Hospital Teacher and Researcher.  The Royal Marsden Hospital.  Paediatric Oncology Unit

Downs Road.  Sutton, Surrey SM2 5PT, UK

Email: bette.petersen@rmh.nhs.uk