Hard copies of the most current booklets about cancer and chemotherapy, and any other relevant booklets required, are also made available to the families. Increasingly some charities providing cancer information also produce digital downloadable copies. Information specific to the disease and treatment is given to patients and families at the appropriate time, usually by the Consultant or the Paediatric Oncology Outreach Nurse Specialist (POONS). The CLIC Sargent social workers also give families written information on emotional, social, financial and practical support.
Increasingly, and understandably, families are turning to the internet for information. They are advised about how to trust information available on the internet and offered advice about the sites we recommend in the first instance. An information sheet, 'How can the internet help us?' is available from CCLG.
If families find information on the internet they or you are concerned about, they should discuss this with a member of the child's medical team.
The websites below have reliable information about cancer in children and young people:
Cancer Research UK Patient information on all types of cancer, provides cancer statistics and a clinical trials database
Children's Cancer and Leukaemia Group Expert, reliable information for patients and families, and links to useful sites.
The Child Brain Injury Trust Practical information on childhood brain tumours
CLIC Sargent Provides support to children and young people with cancer and their families, including many information booklets (see below). Also has a helpline.
Headstrong kids Brain and Spine Foundation Age-appropriate information about what having a brain tumour and treatment will be like. Also has a helpline.
Health Talk Online Video and audio clips with people talking about their experiences as well as information about cancer.
JTV Cancer Support Short films by young people with cancer.
Leukaemia and Lymphoma Research Information and support for patients with blood cancers.
MacMillan Cancer Support Patient information on many aspects of treatment and individual drug information sheets as well as online forums.
NHS Choices The biggest health website in the UK
Teenage Cancer Trust Information and support for teenagers with cancer.
The Brain Tumour Charity Information and support about brain tumours.
There are some disease-specific support websites also, as well as specific on-line support groups that a brief internet search will find.
The following links are to specific publications available that can be downloaded or ordered.