Useful resources
We have compiled a list of our recommended resources and useful links for those affected by a child’s brain tumour diagnosis. If you know of others we should add please contact info@tomstrust.org.uk
The Brain Tumour Charity
Provides groundbreaking research, support, and information on brain tumours and is the world’s largest dedicated funder of brain tumour research.
Teenage Cancer Trust
Offers specialised nurses, youth workers, and hospital units within the NHS, organises events for young people with cancer, and provide comprehensive information on all aspects of living with cancer as a young person.
Young Lives vs Cancer
Offers practical support including financial assistance, social care, and housing, alongside a team of professionals providing emotional and bereavement support. Additionally, they advocate for policy change.
Child Brain Injury Trust
CBIT supports families and professionals working with children and young people who have a brain injury. They operate in hospitals, schools, and the community, providing both online and in-person support.
Children’s Cancer and Leukaemia Group
Provides leadership and expertise for the treatment and care of children with cancer.
The Charity Fighting Childhood Cancer | Children with Cancer UK
Helps fund research, support families and raise awareness.
Brainstrust, brain tumour charity
They provide personalised support and build resources that help people with a brain tumour and their loved ones live the life they want after diagnosis.
Brain Tumour Research | Together we will find a cure
Focused on finding a cure for all brain tumours through campaigning to increase the national investment in brain tumour research, while fundraising and raising awareness.
CHARITIES – The Oncology Guide
List of UK children and teenager cancer charities.
Max cards are the UK’s top discount card for families of children with additional needs, disabilities and/or life limiting conditions or illnesses. One card covers a family of four.
Young Live vs Cancer grant
If you are a young person aged 18-24 diagnosed with cancer, or a parent of a child aged 0-17 diagnosed with cancer, you can apply for this grant by filling out the application form in the link.
Cancer and School Life pack
Young Lives VS Cancer have produced this brilliant pack to help school children understand what a child may have been through before they return to school.
(IPSEA) Independent Provider of Special Education Advice
The leading charity in the field of SEND law – helping you navigate the system.
BPS – British Psychological Society
CAP – Clinical Associate Psychologist
CCC – Children’s Cancer Centres
CCLG – Children’s Cancer and Leukaemia Group
CNS – Central Nervous System
CP – Clinical Psychologist
CPFT – Cambridgeshire and Peterborough NHS Foundation Trust
CYP – Children and Young People
DClinPsy – Doctorate in Clinical Psychology
HCPC – Health & Care professions council
ICB – Integrated Care Board (formerly CCGs)
NICE – National Institute for Health & Care Excellence
ODN – Operational Divisional Networks
OT – Occupational Therapist
PCT – Primary Care Trust
POSCUS – Children’s Paediatric Oncology Shared Care Units
PTC – Principle Treatment Centre
SaLT or SLT – Speech and Language Therapist