Coping with children’s brain tumours

It is extremely distressing to find out that your child has a brain tumour. It can raise many different emotions. It is very normal to feel angry, sad, upset and shocked. There is such a lot to take in. You are likely to worry about whether they will get the right treatment, what will happen, and how you will all cope.

If you have other children most parents and grandparents worry about them as well. Practical help and support is something people nearly always need. This might be help with shopping or with looking after other children in the family.

It is essential that parents and other close family also have support. It doesn’t show weakness to ask for help. Talking to friends and other members of the family can help you deal with your feelings.

Specialist nurses and social workers at the hospital can offer support too. Some centres can also offer more formal psychosocial help to parents. Ask your child’s clinical nurse specialist if they can let you know what’s available.

Organisations that can help

Cancer Research UK

Cancer Research UK has an online forum called CancerChat. Here you’re able to chat to other people, including parents, who are affected by cancer.

The Brain Tumour Charity

The Brain Tumour Charity is the world's largest dedicated brain tumour charity. It funds research, provides support and information services and raises awareness. It aims to reduce the harm brain tumours have on quality of life, and ultimately, to find a cure.

Support line: 0808 800 0004
Email: support@thebraintumourcharity.org 
Contact form 

The Children’s Cancer and Leukaemia Group (CCLG)

The Children's Cancer and Leukaemia Group (CCLG) work to coordinate national and international clinical trials. They also provide information about cancer for children and their families.

Phone: 0333 050 7654
Email: info@cclg.org.uk

Tom's Trust

Tom’s Trust is a UK charity that provides mental health support to children with brain tumours and their families. They currently support families from 3 cancer centres but hope to expand to more hospitals in the UK soon. As well as providing support they also have a Toolkit for adults supporting siblings of children with brain tumours.

Phone: 0300 102 8667
Email: info@tomstrust.org.uk

Young Lives vs Cancer

Young Lives vs Cancer is a charity that provides clinical, practical, financial and emotional support for children and young people and their families who are affected by cancer. You can chat to the social care team through their live chat. Or you can email or phone them.

Phone: 0300 303 5220 Monday to Friday 10am to 4pm. 

Email: getsupport@younglivesvscancer.org.uk

HeadSmart

This project aims to increase the awareness of brain tumour symptoms in children and young people. This is to try and improve the diagnosis of childhood brain tumours.

Phone: 01252 237 792

Maggie's

Maggie’s is a national charity with centres across the UK. They offer care and support to people affected by cancer. Each centre is beside an NHS cancer hospital and is run by specialist staff.

You can join a support group, take part in weekly sessions like relaxation and stress management, or learn about nutrition and health. You can also visit just to have a cup of tea and a friendly chat.

Phone: 0300 123 1801
Email: enquiries@maggies.org

The Family Fund

Family Fund is the UK’s largest charity providing grants for low-income families raising children or young people who are:

• disabled
• seriously ill

Family Fund:

• gives grants to families on a low income for items they may not otherwise be able to afford

• offers services to help parents and carers achieve the outcomes they want for their child and family

• provides families with ways to share their experiences, so it can help others in the long-term

Contact details:

Phone: 01904 550055

Over The Wall

Over The Wall are a national charity that supports children and young people facing serious health challenges through residential camps in communities across the UK.

There are also sibling and family camps available.

Other sources of help

Some organisations can put you in touch with a cancer support group. We have information about books, leaflets and other resources about cancer treatment.