The three reports that make up our Life with a Brain Tumour project 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.
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:
- 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
- 95% of those with more than one child said siblings' lives had been affected by the diagnosis
In the report, Jessica Mitchell says: “Our youngest son was only ten weeks old when Dylan was diagnosed so he knows no different.
“But my oldest son, who is six, has become more and more withdrawn because Dylan takes all of our attention. He is suffering at school."
Losing My Place is vital research for assisting us in our effort to achieve a deeper understanding of the needs of, and challenges faced by, children, young people and their families.