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.

For support and information, you can call the Cancer Research UK information nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday. They are happy to help. They can give advice about who can help you and what kind of support is available.

The Brain Tumour Charity

The Brain Tumour Charity is the world's largest dedicated brain tumour charity. It provides support and information services and raises awareness.

Support line: 0808 800 004

The Children’s Cancer and Leukaemia Group (CCLG)

The Children's Cancer and Leukaemia Group (CCLG) produces booklets for parents and brothers and sisters of children with cancer that you may find helpful. You can download these from their website.

Young Lives vs Cancer

Young Lives vs Cancer (previously called CLIC Sargent) is a charity that provides clinical, practical, financial and emotional support for children and young people and their families who are affected by cancer.

Phone: 0300 330 0803

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. If you’re not near a centre, you can access support and information on their website.

The Family Fund

Family Fund is the UK’s largest charity providing grants for low-income families raising disabled or seriously ill children and young people. Family Fund's aim is to improve the quality of life of disabled or seriously ill children and young people, realise their rights, and remove some of the barriers they face.

What is available?

Family Fund will look at any grant request that can help with the needs of your disabled or seriously ill child and your family.

When you apply, think about what would help you and your child. You can ask for more than one item. But tell them what is most important to you and your child. The Family Fund looks at grant requests in order of priority.

You can apply for:

  • a Centre Parcs break
  • clothing
  • a Butlin's holiday in the UK
  • a break with Haven in the UK
  • computers and tablets
  • day breaks to, for example, to the zoo
  • kitchen appliances
  • sensory toys and equipment
  • games, books and music
  • games consoles
  • outdoor play and leisure equipment
  • special trike or bicycle
  • garden improvements
  • help towards teaching a young person to drive
  • pets

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.

Last reviewed: 
03 May 2022
Next review due: 
03 May 2025

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