brainstrust is a brain tumour charity that focuses on support and wellbeing. Little brainstrust is designed for children and teenagers living with a brain tumour diagnosis. Our support specialist for children and families is based in Sussex however has a national role.
500 children a year are diagnosed with a brain tumour, and there are thousands of families living with a brain tumour. Two thirds of children diagnosed with a brain tumour are left with a disability. Families can find communication difficult, and awareness of brain tumours in children is low; this is even though brain tumours now kill more children than any other illness in the UK.
We are actively trying to grow clinical links with hospitals and other charities locally and nationally, so that we can collectively work together to provide optimum care to our young patients.
Families facing a brain tumour diagnosis of a child feel scared, confused and alone. We know. That’s why we’re working to support families by:
- Providing unique, honest, coaching-led support by phone (24/7) or email, helping families overcome challenges and find the best possible outcome for their child, and their family
- Helping families feel less alone by creating communities of peer support, where families can connect and share experiences with others who really understand
- Providing useful resources that are endorsed by the clinical community, to help bring clarity, relief and hope when families are feeling overwhelmed
- Connecting people with our great network of support services and clinicians so that families can build up a system of tailored support to help them feel in control again
- The brain box – The brainstrust brain box is a must have support toolkit for people with a new brain tumour diagnosis and their caregivers. Fully customisable, with resources relevant to your unique situation, the brain box also comes with treats like teabags and self-care items to remind you to take time to look after yourself.
Our brain tumour hub is a fantastic online browser to find services local to patients’ geographical location. We have many resources to support families and these can be found on our website or you could request a copy by emailing hello@brainstrust.org.uk
