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 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.
CLIC Sargent can offer help and support for parents who have a child recently diagnosed or living with childhood cancer. They can also help you access financial support.
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 749 990
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
The Family Fund gives grants to lower income families with disabled or seriously ill children. It aims to make life easier and more enjoyable by helping to fund things like holidays, washing machines, computers and hospital visiting costs.
Parents or carers of disabled or seriously ill children under the age of 17 can apply if their child is living with them.
You need to show that you're entitled to one of these benefits:
- Universal Credit
- Child Tax Credit
- Working Tax Credit
- Income based Job Seekers Allowance
- Income related Employment Support Allowance
- Income support
- Housing Benefit
- Pension Credit
And you have permanent residency in the UK and have lived in the UK for at least 6 months. Or for 3 months if your child is less than 6 months old. And your child is not in Local Authority Care.
If you don't receive any benefits you can still apply for a grant, but the charity will need information about your household income.
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.