CCLG publications

My child has a brain or spinal tumour

Published: January 2017
Next review: January 2020
A guide for parents and carers.

Reading this guide, you are likely to be going through one of the hardest things a parent can face – knowing your child may have a brain or spinal tumour. You may be feeling frightened, overwhelmed, bewildered or numb, while at the same time trying to appear strong and calm for your child and other family members.


Be assured you are not alone. Between 400 and 500 children are diagnosed with brain or spinal tumours each year in the UK. That means many families have been through this journey over the years, and there is support out there, from them and from your child’s health professionals.


In the meantime, this guide is here to accompany you through this journey. It was written with the help of parents and carers who have been through something similar to you. They told us
what it was like for them, and what they learned along the way, so that we can share it with you. You can nd their experiences and tips throughout this booklet.


It gives an overview of the conditions, diagnosis, treatment and rehabilitation, as well as how to look after your child, yourself and loved ones. If you would like more detail about anything covered here, please ask your healthcare team.


This edition was edited and revised by Dr Nicky Thorp (Consultant Clinical Oncologist, Liverpool and Chair of the CCLG Neuro-Oncology Special Interest Group) and Claire Shin eld (CCLG Information Of cer) in conjunction with the CCLG Publications Committee, comprising multiprofessional experts in the eld of children’s cancer. The original 2008 version entitled ‘Brain and Spinal Tumours in Children and Young People: A Parent’s Guide’ was edited by Monica Hopkins (Advanced Nurse Practitioner, Liverpool) and Professor Barry Pizer (Consultant Paediatric Oncologist, Liverpool). Editorial support was provided by Eleanor Stanley (Writer).


We would like to express our deepest thanks and gratitude to Cate, Debbie, Jane, Julie and Rachel who talked honestly and openly about their experiences as parents of a child with a brain tumour, helping us to develop this booklet for future families.


We would like to thank the following expert reviewers for their valuable input: Dr Emily Bennett (Clinical Psychologist in Paediatric Neuropsychology, Nottingham), Dr Amos Burke (Consultant Paediatric Oncologist, Cambridge), Dr Tom Jacques (Consultant Neuropathologist), Katie Johnson (Paediatric Occupational Therapist, Brainbow rehabilitation service for children with brain tumours, Cambridge), Dr Steve Lowis (Consultant Paediatric Oncologist, Bristol), Mr Donald Macarthur (Consultant Neurosurgeon, Nottingham, and Vice Chair of British Paediatric Neurosurgery Group), Dr Andrew Peet (Consultant Paediatric Oncologist, Birmingham), Louise Robinson (CLIC Sargent Neuro-oncology Nurse Keyworker, Nottingham), Dr Sophie Thomas (Consultant Paediatric Neuropsychologist, Nottingham), Professor David Walker (Consultant Paediatric Oncologist, Nottingham), Louisa Wright (Paediatric Neuro-oncology Clinical Nurse Specialist, London).


We would also like to thank parents from the Brainbow rehabilitation service in Cambridge who also contributed to the review process.

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