Losing My Place: The Reality of Childhood with a Brain Tumour

A unique insight into the suffering that childhood brain tumours cause for children, young people and their families.

Losing My Place is based on a survey of almost 300 young people and their parents following a childhood brain tumour diagnosis. These contributions provide a unique insight into the suffering that childhood brain tumours cause for children, young people and their families. The report is from the Life with a Brain Tumour project by the Brain Tumour Charity. It is one of three reports and will provide an extensive evidence base to inform improvements and innovations across its services. They will be used to help us ensure policy makers, healthcare professionals and the public understand the realities of a disease that affects people of all ages. They tell stories of courage and perseverance when a child is forced to miss out on so much of what the world has to offer; when they are alone whilst others are making friends, hatching plans and falling in love; when they cannot keep up in school and life at home is forever changed; when they find they are facing death, before their life has really begun. The report also examines the impact on the lives of carers and other family members − they too may face adjustment to a new position within the fabric of family and daily life. Among the children and young people who responded:
  • More than eight out of ten (84%) said their brain tumour had made them feel lonely
  • Seven out of ten (70%) said they had difficulty doing things outside the house
  • More than a third (36%) of those who had symptoms said they experienced difficulties with thinking, concentrating and processing information
  • Three out of ten of those with symptoms reported changes to their personality
Among parents and carers:
  • Almost three quarters said their child's brain tumour had had a moderate or severe impact on their own mental health
  • 90% said they felt lonely or isolated as a result of their child's brain tumour diagnosis
Read the full report here.   
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