The following video outlines the report and contains content that some viewers may find distressing.
'Losing My Place: The Reality of Childhood with a Brain Tumour' is the third report from our Life with a Brain Tumour project - the most comprehensive study of its kind. All three reports provide an extensive evidence base to inform improvements and innovations across our 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.
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.
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:
Among parents and carers:
The report contains content which some readers may find distressing.
The research has provided the evidence to illustrate what we have been hearing first hand from those affected and has led to 'Defeating Brain Tumours' our five year strategic Plan.
Losing Myself: The Reality of Life with a Brain Tumour is our report outlining the findings of this research, it outlines the daily struggles faced by the majority of those affected and contains statistical information and accounts of daily life that some people may find distressing.