Paediatric and Teenagers’ Support

Thankfully there are numerous support services for children and teenagers, so below are some of the main organisations in the UK. We hope that these provide a starting point for you to discover the many people who are waiting to help you over the coming years.

Children’s Cancer and Leukaemia Group. As well as some excellent factual literature about brain tumours, some of the CCLG booklets discuss coping strategies for Parents and Grandparents, and may help you to cope with the challenges that you are facing.

The Teenage Cancer Trust funds and organises support to improve the lives of teenagers diagnosed with cancer. Their website also contains a useful list of support services throughout the UK. Tel. 0202 7612 0370

Stupid Cancer is an American support website for teenagers with cancer. Even if you don’t live in the US, you may like to access some of the information or online forums.

The Children’s Trust works with children who have disabilities and complex health needs arising from acquired brain injury, including brain tumours. They are based in Surrey but offer their services to children from across the UK, focussing on the area from East Anglia across to Wales and South of that line. Tel. 01737 365 000

The Rainbow Trust Children’s Charity cares for children with life threatening or terminal illness, and their families. Practical and emotional support is offered from diagnosis through to and following bereavement, both within the family home and at their two respite centres in Surrey and Northumberland.

Clik Sargent Cancer Care for Children  provides extensive services for young people under 21 years of age who have any form of cancer, and their families. Provide free accommodation adjacent to some paediatric oncology units in the UK, support a growing home care nursing team and provide cash grants for any special need. Also offer counselling and information including a booklet for children entitled “Mary has a brain tumour”. Even have 2 holiday homes in Ayrshire and Ireland for family breaks. Helpline: 0800 197 0068

Together for Short Lives Lifeline for families who care for seriously ill children  phone 0808 8088 100

Working Families helps children, working parents and carers and their employers find a better balance between responsibilities at home and work. Tel. 0800 013 0313

Riprap is a website that can help young people cope when a parent has cancer. You’ll find stories from other young people going through the same situations as you are. You’ll also find information and tips to help you understand and deal with what is going on in your family, and local contacts.

Macmillan Cancer Support have a section of their website designed for young people, entitled Why Bother?  They also have The Macmillan Youthline, offering information and support to 12-21 year olds who are affected by cancer, whether the caller is a patient, family member or friend. Calls are free, confidential and don’t show on your phone bill. Lines are open Mon-Fri, 9am to 10pm.  Tel. 0808 808 0000, or you can email [email protected]

Tom’s Trust is dedicated to providing psychological support to children with brain tumours and their families

Finnbars Force gives families of children diagnosed with a brain tumour grants of £500 to help cover some of the costs faced upon initial diagnosis, such as travelling to a far away hospital, car parking and food whilst away from home. You can apply for a grant using their online application forms